A journey of another kind....

Copy and paste

2010-06-06T14:20:00.000-07:00

Http://Martin-Lifeafterjane.blogspot.com

And Finally

2010-06-05T10:04:00.000-07:00

Losing someone as special as Jane has left a massive impact on all our lives. Jane posted on an earlier entry that she didn't think I was prepared for her death. That was a massive understatement. It hit me between the eyes like an inter city express. The sense of loss and loneliness is all consuming and nothing anyone says helps to appease it. Last thing at night and first thing in the morning are the very worst times as grief takes a grip of every thought.....

I know what Jane will be saying right now, " For goodness sake Martin, my journey is over, if you want to go posting start your own blog !" Ok Ok I might just do that...

Before I go I would like to thank a few people.

I would like to thank all her blog family. She took so much pride in this blog and loved to read your kind comments. It meant everything to her to hear how it has helped so many people in similar situations.
I would like to thank Team Jane with a special mention for her GP, Dr Arora who always told her that she was not a patient but part of his family and to Dr Pofiri who fought tirelessly for the cancer drugs for her and that extended her life for just over three wonderful years.
I would like to thank St Mary's Hospice and the wonderful nurses for the care and consideration they gave to Jane that made her consider it her second home and for the care, help and support they gave to both of us in those final terrible hours.

Jane's funeral will be held on Friday 11th June 2010. If anyone would like details please feel free to email on ....ThompsonB31@aol.com

That leaves just me to thank everyone for their thoughts and prayers and thankyou for reading about and sharing in Jane's wonderful journey.
I will leave you with a quote from Edward,
'Its not the years in your life that count, its your life in those years."

Kindest Regards

Martin

Miss Me, But Let Me Go

2010-05-31T01:48:00.000-07:00

A poem, found by Jane by an unknown author that she wished read at her funeral......

When I come to the end of the road,
And the sun has set for me,
I want no rites in a gloom filled room,
Why cry for a soul set free.

Miss me a little, but not too long,
And not with your head bowed low,
Remember the love that once we shared,
Miss me but let me go.

For this is a journey we all must make,
And each must do it alone,
It's all part of the Master's plan,
A step on the road to home.

So when you are lonely and sad at heart,
Go to the friends we know,
Bury your sorrows in doing your deeds,
Miss me, but let me go.

Journeys End

2010-05-30T09:52:00.000-07:00

Jane passed away this afternoon.

She looked so peaceful after months of so much pain. I just wanted to take her home and care for her all over again. People say that I was so good to care for her the way I did but I loved her so much it was an absolute pleasure. I would do the same again tomorrow if I had the chance, now all I have left are memories. There is a huge void left which I am not going to be able to fill. She was my life, in sickness and in health and I will miss her with all my heart.

Rest in peace Jane.

Jane Catherine Thompson
18th January 1959 - 30th May 2010

Tears and goodbyes..

2010-05-29T22:57:00.000-07:00

I am sitting here typing in the early hours of Sunday morning in tears and yearning for my Jane..

I received that phone call from St Mary's last night... "Mr Thompson, Jane's condition has deteriorated, we are trying to make her comfortable but you might want to come in.. "

I gathered up the James, Ed and Catherine and together with Caroline we made the worst car journey you will ever have to make.
St Mary's staff were their usual efficient self in such circumstances but then again they have had a lot of practice, unlike us. I stuck by my guns and reiterated Jane's wish for me not to take her to any more hospitals and then agreed for her to be sedated as she was becoming agitated and distressed. As the sedation was administered we just had a moment to all say goodbye. Jane managed a smile and squeezed each of our hands before settling down into a controlled sleep.

Oh Jane I love you so much, you are so brave. You have kept your dignity throughout this terrible decease I just want to take you home and keep you there forever.

James sat with her last night and now I'm going in to keep her company as her journey ends..

Martin

Update.. just when you thought it was going smoothly

2010-05-29T11:59:00.000-07:00

Nothing goes smoothly with cancer, I've learned that the hard way.

Friday night/ Saturday morning Jane developed an infection in her chest. Her temperature rose to dangerous levels and I just sat with her in despair. I phoned Caroline who came up straight away and together we put together a game plan. We contacted everyone and with Jane's wish for me never to take her to hospital again, we pushed for a return to St Mary's. Jane was in a semi-conscious state, sometimes crying out for God to help her. She hadn't eaten or drank anything in 12 hours and was not taking anything orally, including her MST. I feared the worse..

The on call district nurse was marvelous and soon had St Mary's on the phone and by 2pm she was in her own room, anti-biotics inside her and fans directed to keep the temp down. She looked so vulnerable but by 5pm I was so tired and had to leave her in the capable hands of the nurses. She was still in her semi-conscious state and I felt real guilt in leaving her.. still fearing the worse.

Martin

Homeward Bound ?

2010-05-28T09:06:00.000-07:00

22 days Ive been in St Marys now - doesn't time fly ?And what a lot has happened too. In this time we have apparently elected a most unusual government - run by twins. And Edward had his 17th birthday.

Happy Birthday Edward !!

I measure the passage of time now by how much I can move my toes/knees/thighs. And any improvement seems to have come to a halt now. It takes a good half an hour of massage to 'wake' my legs up in order to get the smallest movement out of them. And that is very hard work. It can be a bit depressing.

'Home' is planned for Wednesday 26th - all being well. Everything is in place now. All the equipment I need and a care package which includes 3 calls a day and for most nights a sitter. Its very comprehensive and I must admit Ive been quite overwhelmed by the amount of help Ive been given - and will need. I'm going back to a very different life indeed.

How do I feel about going home? Things are so very different - I left home able to walk, move around, look after myself more or less. Now I'm virtually paralysed from the waist down which has a huge impact on the amount of pain I'm in. Lying in bed makes it much worse, I get stiff as a board. Martin is brilliant at sitting me right up with pillows so I can wriggle about a bit at least on my bum, relieving the pressure.

Despite all this I want to be at home, in my house, my home, with my family - and I know they want me home too. Its a bit daunting at the moment but we will be getting loads of support and I'm sure we will find our own level after a while.

Wednesday Afternoon

I'm home !!
Not without incident of course. The paramedics had a bit of a game getting me in the house on the stretcher and I provided the afternoons entertainment for neighbours and passersby, clad in a little blue nightie being lifted and twisted and turned in order to get me inside !

At one point I thought we were auditioning for 'Britains Got Talent' !!!

And the winner is........

2010-05-25T07:23:00.000-07:00

....... well, we don't actually know yet. But 'Kidney Cancer - Jane's Journey' has been shortlisted for 2 awards, one of them a major PR award.

I don't know any more details yet apart from we shall know in July if we have won !!

How exciting !!

Pain xxxx Pain

2010-05-24T10:24:00.000-07:00

Mostly, when pain starts creeping in and making itself at home, dealing with it swiftly and firmly is enough. Pain killers taken, position altered , then just try to relax and wait maybe 10-15 mins for them to start to work. And the blessed relief when they do.

But sometimes, and I'm not sure why, this doesn't work. No relief forthcoming. Pain intensifies. Wait maybe an hour and take some more. Maybe different ones. Wait again. A small bubble of panic starting tiorise. Wait again. Still nothing. Fear takes a grip now too. There is nothing worse than lying there in the dark in agony.

Distraction sometimes helps. Watching the TV or reading. Deep breathing, like we did in child birth, helps me a lot.. Swearing very loudly can be satisfying !!

But sometimes nothing helps - like tonight. It is now 2am, Ive had an extra 50mg morphine plus some other stuff and it hasn't worked. I cant even move around and position myself more comfortably in bed because of my right arm, so it becomes a vicious circle.

Pain + tension = Fear + more pain.

Ive always been an advocate of 'counting your blessings' - usually I can find dozens to make me smile. Last night I barely managed a couple, and that's hardly a smirk !

The pain is still there, digging its claws into me, holding on fast with its vice like grip....

It will pass. It will. Eventually. And I can relax at last. Till the next time.

My Man

2010-05-18T16:09:00.000-07:00

I'm really worried about Martin. Terribly worried in fact. He is under such strain at the moment - and for once I'm not talking about me. Its his job. A short while ago there was a big change in the department in which he works - and in fact runs. His workload increased dramatically - unfortunately his workforce didn't. And the burden has fallen on him. He hasn't even been given basic staffing levels and has been told there will be NO new staff employed in the near future.

So - he has this terribly stressful job without the staff to do it with and he is trying to cope with the children and the house and everything that's happening to me. Poor bloke. I'm worried for HIS health now. He needs to take care of himself. Ive told him to go and see our GP and have some time off work - but hes a man....and men don't 'do' GP's apparently.

I love this man so much and its tearing me apart seeing him like this - I cant help feeling guilty too - as if some of it is my fault.

When my legs stopped working and I was admitted here 2 weeks ago it was blatantly obvious Martin wasn't prepared for my dying. Not at all. He has since admitted as much himself. So he needs time to do this. And talk to someone. A close friend maybe.

Update........
Martin went to see our GP this evening and has been immediately signed off work. Dr A. said he was amazed Martin had coped for so long.
I'm SO relieved.

Reality Bites

2010-05-16T09:40:00.000-07:00

Getting though this isn't easy....this time it's taking more than a smile and positive attitude. Now it's a grim determination to see this through to the bitter end. No matter what lays in store for me along the way.

I still smile of course, and crack a joke and see the funny side of things where possible, but surviving this time is taking something deeper and more primeval - almost a type of anger/hate I can direct at my cancer psychologically, like a weapon.

Choosing 'anger' is a good thing as I found out the first time I was hoisted into my wheel chair. I couldn't believe the amount of muscle wastage and loss of sensation that has occurred in just 10 days. All I have left are tiny spasms in my feet and legs. I just burst into tears completely devastated. Clare the physio calmed me down. She explained there is still a lot of inflammation caused by the radio therapy which should go down and the fact that 'messages' - the spasms - are getting through to my toes is a good sign. I'm yet to be convinced. But there is an awful lot of hard work to be done - and this is where the anger comes in. I can direct it at my useless, pathetic, chicken legs right now and get on with my exercises. And it sure is hard work. Who would think that wriggling your toes can make you out of breath ? I kid you not - it does. After half an hour I'm sweating !

So reality bites. I was ridiculously over optimistic at the beginning - oh yes I would walk again no problem. But then I saw, and felt, for myself the damage that had been done and it hit me hard. I have a very long hard road ahead to climb - yes, another one, with no guarantee at the end of it and goodness knows what may happen along the away.

I have adjusted my goal too - at the moment it will be enough to have my legs shaved - and maybe some pretty pink nail polish ?

A Life Before

2010-05-13T10:50:00.000-07:00

I did have a life before cancer - really I did - although at times its difficult to remember it now. Out of my 51 years only 3 1/2 have been blighted by Rcc. The rest were 'normal' - woman, wife, mother, homemaker - nothing to set the world on fire but a happy, secure and above all healthy life. As exciting as the past few years have been, all the travel and experiences I've had - how I miss my old life. How I yearn for it now. The simple routine of kids at school, Martin at work and me just running the house - cleaning and shopping etc... I loved it ! Every single moment of it especially when the children were little.

I've always worked, but only very part time. When James was born Martin and I made the decision that primarily I would be a stay at home Mum. Both of our mothers were the same and it was something we wanted for our children. I remember a glorious sunny '1960's' childhood so vividly. Mum always at home, Feeding the ducks, trips to the park and the swings, helping Mum bake cakes, swimming - it was wonderful. Me, my 2 brothers and Mum - Dad was away a lot because of his job but Mum was always there.

It was something I tried to recreate for James, Catherine and Edward - and I'm really happy to say I succeeded. Together with Carol and her 3 sons.

I was always lucky enough to have something my Mum never had - a car, and we would pile it high with provisions/pushchairs/nappies etc.. and take off for the day. The Nature Centre, the seaside, country park, Zoo, visiting friends etc.... Nothing phased us with 6 small children. Camping in Devon for a few days. We even went to Tunisia for a week when James was only 3 !!

The children became incredibly close in those special years before school, even Catherine being the only girl, and now consider themselves more cousins than friends.

I am now often asked what I consider my greatest achievement to have been?
Being involved in the fight to get Sutent funded?
Making the film about Kidney Cancer?
Going to Brasil?

No - none of these.

My greatest achievement has been to give my children the kind of childhood I had. I couldn't have done this without Martin of course. So it was very much a joint effort which gave them the happy, secure, contented first few years that I have seen them use as stepping stones to grow on and become the 3 amazing, wonderful young people they are today.

And I'm SO proud to have played a part in that.

Night Angels......

2010-05-11T08:19:00.000-07:00

I'm still not sleeping too well.. For some time I've been waking in the early hours, unable to get back to sleep for ages.

But recently things have changed - I wake because of the very strange, very vivid dreams I've been having lately. For a good few moments I'm very disorientated - unable to distinguish between dream and reality..

This was quite frightening the first few times it happened. But by now the night staff are used to 'them' and 'me' and 'bring me round ' gently.

Thank goodness they are here. It would be horrible at home on my own! And not to say dangerous as the first thing I try to do is get out of bed - with legs that wont work !

The cause of these dreams is the heady cocktail of drugs I'm taking, especially the steroids plus all the stress I'm under.

The night staff are wonderful - they sit and talk to me quietly, make me a coffee and some toast and when I'm ready to sleep again they give me a lorazepam and watch whilst I nod off.

But what would I do if I were at home with no one watching me at night? For the first time ever I am happier and feel safer here than at home. For the first time ever I don't want to go home. I want to stay here, safe, with my night angels.

On my knees but still staring at the stars

2010-05-09T14:41:00.000-07:00

Once the decision had been made, things happened very quickly - very quickly indeed for the NHS which usually saunters along at the pace of a constipated snail.
There was little time to waste if we were to try to stop the damage currently being inflicted on my spinal column. In fact it was so swift that i was still reeling and trying to come to terms with what WAS happening when i found myself, the very next morning squashed tight into a huge Smarties tube, surrounded by the most amazing building construction site noises which a pathetic attempt to distract me from them was being played - '70's cheesy disco music. It was a long uncomfortable hour having every inch of my spine being scanned in very great detail.
But i had no pain. Dr S had seen to that. I was quite calm and relaxed during the whole process.
An hour later i was back on stretcher, having taken a few More pain killers, and being wheeled up to the MRI centre for the results. Still flat on my back of course, until we knew if my back was stable.
Being Thursday it was DR P's big clinic day too and one of the nurses told him I was in the waiting room. Bless him. Out he came for an informal consultation there and then.
I am starting back on Sutent tomorrow (Friday) highest dose, all guns blazing and fingers crossed! I've had so many bits and pieces crossed now for so many people I certainly don't have any fingers left!! (Makes mental note to purchase a troop of African Juggling Octopii - lol) A very short time later I was called in to see Prof James for my MRI results. And oh my goodness - they were good. I have 2 areas of soft tissue deposits right nest to, but not involving, my spine. One where my bra strap is, the other in the small of my back. Both compressing the spine and causing the paralysis but not damaging it - yet. And both treatable with deep radio therapy and sutent. And yes - I can sit up and use a wheel chair!!
No sooner said than one appeared and with the help of three nurses i was soon sat in it. Heaven to be upright again!! I couldn't weight bare, had limited sensation in my feet and muscle wasted, especially in my calves which causes quite a lot of pain. But after transfer I could sit upright quite comfortably and safely.
Prof James exhibited the same positive confident aura as Dr Steve and Dr P had and I was soon signing the consent form for more radio therapy which would begin immediately - this afternoon!!
I was whisked upstairs to the planning department - and this is where I met the first problem of the day. A radiographer who didn't bloody listen to me. I told him that I couldn't weight bare, that I needed a lot of help transferring from chair to bed and visa versa. But his mind was obviously elsewhere and as i struggled to stand with only the help of Hayley, a lovely st Mary's nurse who had accompanied me. He just watched as my legs buckled under me and I fell to the floor, HARD. Fortunately though on my knees and not my delicate back. But the shock and the pain was enough and i was soon crying and screaming at him "Bloody idiot! Weren't you listening when I told you I couldn't weight bare??"
I had to be hoisted up off the floor, no apparent damage done except to my ego!! But the fright and thought and thought of what might of happened if i had landed on my back had been enough. I didn't trust him, didn't feel safe and i wanted to go back home (st Mary's)
In floods of tears, angry and anxious, i took another dose of the strong pain killers Dr Steve had prescribed for my use during the day. Then settled down to wait for the ambulance with Hayley. If i had landed my back it would of been broken in two places - and that would of been the end of that. So I returned to st Mary's still in a bit of a state, being comforted by Hayley. Once back I was checked over. A few bruises. A badly wrenched right arm where i had tried to save myself from falling - just when it was starting to get better too!! But my spine was ok thank goodness. What a horrible end to what had started out as a very encouraging, positive day. I was still angry - very angry though - but agreed to return tomorrow and finish the treatment as long as that idiotic muppet radiographer wasn't involved!! He wasn't. I reckon he had seen me arriving at the department and made a run for it.
Needless to say the rest of the planning went a head beautifully and i was soon my way downstairs for the first treatment (There will be 5 altogether - including weekends too!)
My tummy and sides and now covered in tiny black tattoo markers for the machine to look in on. Never thought I'd see the day when i was covered in tattoos!!
The treatment took just over 5 minutes and we were all back in st Mary's by 5:30 pm - tired and hungry - but all in all one piece

1 down - 4 to go!!

Just a glimmer...

2010-05-08T01:23:00.000-07:00

You are in a long dark tunnel and its absolutely pitch black. Suddenly up ahead there is a tiny speck of light... just a glimmer.. but it makes your heart leap with hope.

Well, as I said before, what a difference 24 hrs can make. Dr Steve, St Mary's consultant,came to see and examine me. After just 24 hrs of high dose steroids I can move my legs again ! Up and down, side to side and even raise them off the bed. This is apparently a remarkable response and I sign that radiotherapy could indeed work. I can only stay on the steroids for a few weeks because of the problems they cause and so the problems with my legs would return. With radiotherapy I would have an 80% chance of shrinkage lasting for maybe a few months !! I will have to have an MRI scan to see if my spine is stable and if it is I can at the very least use a wheelchair again. He is going to discuss changing back to Sutent with Dr P too which if Ok, should reduce the need for blood transfusions plus (fingers crossed) start shrinking my tumors again since I've had an 8 month break from it.
So another huge shock.
And another big decision.
How brave am I ?
Can I grow through with awful radiotherapy again ?
The side effects will be very worse as my whole spine will have to be treated. Dr Steve has promised he will dope me up with mega pain killers for each session and they will keep me here at the hospice throughout the treatment.
Am I strong and brave enough to keep fighting ?
One look at Martin's face gives me the answer. Whilst there is a glimmer of hope I can't stop fighting, not even now. Even if the radiotherapy works this is no cure of course but it may make my final weeks/months much more comfortable and would possibly mean I wouldn't be bed bound. The change back to Sutent may work or may not but if it does may slow the progression of my disease elsewhere again.
There are no guarantees, I know that, I have been treading my own path fighting RCC for some time now in the hope it may help not only me but those who find themselves in the same position as me. The one thing I have learned is that you deal with one problem and another pops up straight after.
The most important thing with all the operations, procedures and drugs is to remain steadfast, strong and positive. Smile and laugh with those around you... even if there is precious little to smile about.

Jane

PS. Reading all the comments and thoughts from those following my journey has left me quite emotional and even more determined to fight to the very very end. May I thank all of you from the bottom of my heart especially those who have taken comfort from my words to combat their own personal grief.

Almost the end of my journey

2010-05-04T05:24:00.000-07:00

* Written by Jane at St Mary's.. typed and posted by Martin.

What a difference 24hrs can make. Its almost unbelievable really. I'm sure I'm still in shock, I know Martin is.
As I've said before on my blog, I was getting quite a lot of pain in my legs. But I was still managing to potter around on my frame. In fact I was making cakes on Thursday ! The pain in my back, which spread like a tight band around my middle was no worse and being controlled quite well by Ibuprofen. By Sunday my legs were much more painful and I felt quite unsteady when walking so I was quite happy to spend Sunday afternoon and evening with Martin having a blood infusion in the QE Hospital. That for once went well, 3 units in no problem. At 2am we got home and I walked into the house.

Monday morning I woke in agony and... well you know the story from there.

So now I'm back at St Mary's where they are trying to get my pain under control, which isn't easy. My back especially is very painful. I've been catherterized to avoid any accidents as my bladder control is going.
I was offered treatment, radiotherapy or an operation but neither would be curative and would involve a lot more pain and being messed around. I'm not sure my body could take it. So I'm having my pain control sorted and then I'm going home... to die. Its the right decision.
Everyone has been fantastic. Martin, the kids, Carol all the nurses and Doctors. I can't praise them highly enough. 'Team Jane' at its very best.
As I said, I think I'm in shock, but when I feel a bit more settled I will write again.

PS. My hair is still falling out.

Jane

There are no words....

2010-05-03T09:21:00.000-07:00

I really don't know what to say...
Janes's condition has deteriorated suddenly in last 24 hours. She can no longer move her legs without severe pain. We had all and sundry here this morning, McMillian, district nurse, carers and two ambulances.
She was in so much pain that the decision was made to go straight to the Hospice. A simple line like that cannot decsribe what we all went through for 4 hours this morning..
She has a compression on the spine which is either the tumor pressing against her spinal column or a tumor eating away at it. Either way, the Dr said 'its serious' and gave her four options, two of which involved hospital and two paluative care only. Jane in a clear and concise voice stated, 'I'm not going back to hospital, please just make me comfortable, I just want the pain to go away !'
She is so brave, I love her so much.
She requested that they manage her pain and then she wants to come home...
I hope there's time for her to get wish.

Martin

Hairgate...... Part Two

2010-04-23T11:28:00.000-07:00

My hair is falling out again - in handfuls. I first noticed it when it completely blocked the sink last time I washed it. And now it covers the kitchen floor and needs sweeping up every day. I'm not sure this is a recognised side effect of Afinitor - as it was for Sutent. It's only been a couple of weeks but my hair is noticeably thinner - am I going bald this time? Does it bother me? Damn right it does !!

My hair is the one thing that has stayed fairly healthy, apart from the colour change on Sutent which didn't bother me, and I don't want it to lose it now.

At least it is pain free though - about the only thing that is right now. It's either my legs, or my right arm or round my middle and back - or all 3 at once. Sometimes just niggling and mild, sometimes really severe. But it's always there. Pain killers work but only for so long and then I'm watching the clock until I can take some more. Distraction probably works best - and keeping moving. It would be so easy - and nice - to stay in bed all day but I need to keep these legs moving. They stiffen up so quickly so I have to keep pottering around the house.

My right arm is slowly improving - very slowly. It still hurts and I'm still typing left handed (and getting quite good at it !) but it definitely isn't as painful as it was. My 'third boob', just underneath the right one, has grown noticeably and I'm sure this is the source of the pain I get around my middle and my back.

But in myself, the bit that really matters, I feel better. Still strong. Not ready to give in yet. Still optimistic that I will improve physically. Even just a bit.

The Occupational Therapy Dept have supplied me with a lot of equipment to help me around the house, including a wheelchair to use when I go out, which I accept with a "Just while I need it" - sure I will be handing it back soon. I don't think anyone else is that confident from the looks on their faces.

Emotionally I struggle at times, we all do here. With me being able to do so little in the way of getting out we, the family, have taken to reminiscing a lot about our holidays and happier times. What starts off with "Do you remember when we..." ends up with us all in tears - but they are happy tears if you know what I mean. And we all do have so many happy times to remember - we have all been so very lucky.

James comes home for the weekend fairly regularly and it's so lovely to see him - for us all to be together again. You don't realise just how close you are until one leaves. And that worries me dreadfully - because I know that when I 'leave' it will be for good. No popping back at weekends for me. And that"s what makes the reminiscing, and looking at photo's and just being together so important now.

Annual dinner contd.....

2010-04-21T07:34:00.000-07:00

Thank you Nick for replying so quickly on behalf of the JWF - although I was a little surprised to see it here on my blog !

I was delighted to hear that last year a number of patients were able to attend the annual dinner and your aim is certainly not to exclude patients. However, by pricing the tickets so high - 120 pounds IS high even by London prices - you are excluding many of us - albeit unintentionally. Surely there must be some way of reducing that cost and raising money on the night itself? The way it comes across at the moment is more of a corporate charity event with a table priced at 1100 pounds - tax deductible of course for companies but not for individuals.

Maybe some changes could be considered for next year?

Anyway, thank you again for your reply and hopefully we will meet again soon,

Jane

Dear Earl Lowe and JWF............

2010-04-19T15:10:00.000-07:00

Dear Sir,

I am writing to thank you so much for the invitation for my husband and I to attend the Presidents Annual Dinner at the House of Lords in June. I was so excited as I ripped open the envelope with the crest on it and read the first few paragraphs. I don't get the opportunity to go out much nowadays, especially not to black tie dinners.

However, I'm afraid I shall have to decline this invitation. You see, not only am I a supporter of the James Whale Fund but I am also a patient and sufferer of this dreadful disease - renal cell carcinoma. I have been fighting advanced kidney cancer for three and a half years with operations, procedures, treatments and drugs I have had to fight tooth and nail to gain funding for. During this time I have, on behalf of the JWF, made a promotional film about RCC - 'Kidney Cancer, Jane's Journey' - taken part in several awareness events, written many media articles on the subject and have been heavily involved in the fight to secure funding from NICE for kidney cancer drugs.

Having cancer is in itself is an expensive business. I no longer am able to work. My husband has had to take a lot of time off work to both look after me and take me to my many and various hospital appointments - plus pay for the pleasure of parking there - and we still have 2 children living at home. So paying 120 pounds for a meal is totally out of the question, plus the cost of travel and over night accommodation we would need.

I am guessing I'm not the only patient to receive this invitation and whilst I can appreciate the need to raise funds for the JWF, sufferers of the disease are perhaps not the best place to start. Believe me if I were to win the lottery next week the JWF would be the first charity to benefit from it but until then I do all I can in my own way.

I wish you all the best for the dinner in June and hope you raise a lot of money - and thank you once again for the invitation,

Yours faithfully,

Jane Thompson

(I wonder if I will receive a reply?)

Back with a blast !!

2010-04-18T15:25:00.000-07:00

I'm so sorry. Its been weeks since my last post - Im not sure why to be honest. The fact that I'm still typing with one hand, and still in pain, could have something to do with. My latest bout of radio therapy on my right arm was rough - very rough indeed. The pain was almost unbearable and I cried with relief when it was over. That was 2 weeks ago and although the pain has lessened its still there, nagging away, making me wince and jump regularly. I'm still optimistic it will improve further soon. Very soon hopefully as having only one fully functioning limb is a real handicap !

Ive had another stay at St Mary's - primarily respite so Martin could go to France for a few days with his mates to play golf. But it coincided with yet another infection in the wound in my right leg. This is tiny now - just a small hole - but it just seems to refuse to heal. So yet more anti biotics and daily visits from the district nurses to dress it. The slow healing is probably due to Afinitor - it is a known side effect. Ive been on Afinitor for over 8 months now and the side effects have been minimal - a sore mouth and change of taste (particularly annoying in the case of chocolate !) and anaemia which means regular transfusions. As my veins have virtually disappeared by now it takes a very skilled doctor to cannulate me - and several go's. In fact I was due to go into hospital to have a Hickman line fitted last week but cancelled, with Dr P's agreement. Ive just had enough of being messed about with lately and need to be left alone. At home. I do so much better at home. And so far my Hb is fine. I'm eating better at home and sleeping better and I just FEEL better.

This week something happened which has annoyed me intensely - in fact I'm really, REALLY angry about it. On Wednesday a lovely thick expensive envelope landed on my front door mat. I recognised the embossed crest as coming from the House of Lords. The same as I had received last year when invited to 'Afternoon tea' there. Excitedly I ripped it open and sure enough it was another invitation - to the President of the James Whale Fund, Earl Howe no less, annual dinner in June. It sounded fantastic, very posh with black tie and champagne etc.

Then I read the last paragraph. Martin and I were invited for sure, but would have to pay 120 each for the privilege. 120 pounds EACH. And that was just for the meal. No travel or hotel included.

Disappointed isn't the word. I was gutted.

Then I got angry. VERY angry. Here I am, a patient who has been very poorly for past 6 months and who has worked for the JWF a lot in the past what with the film and awareness campaign, being asked for 240 pounds so me and my husband can attend the annual dinner.

Are they mad? Don't they realise just HAVING cancer is an expensive business what with car parking fees every time you visit hospital and the amount of time Martin has had to take off work lately. I bet I'm not the only patient to receive such an invite either.

My first reaction was to rip the bloody thing up but then I thought 'No - I'm going to reply and let both Lord Howe and the JWF exactly how I feel' So I'm busy composing a letter right now. I'll let you know if I receive a reply !

My legs and arm are aching quite badly now - it's taken me 2 hours to type this left handed - so I'll finish in another post in the next few days.

Thank you everyone for your good wishes and prayers - I'm still here 3 years and 4 months after diagnosis so they certainly are working (plus the fantastic work Dr P has done)

What i need is a vampire....

2010-03-23T13:07:00.000-07:00

8pm Bournville ward
Queen Elizabeth hospital
Birmingham

Yes it is me, really it is. I've managed to wrestle control of my blog again before Martin turned it into ''great golf I have played''. this is made easier by the fact that the Q.E. has internet access available. In fact this is the only thing to make my stay bearable.You all know how much I enjoy being in hospital !!

The plan is to give me some blood, using my femoral vein if necessary. My very low H b almost certainly contributed to the confused/distressed night I had yesterday. To be honest i don't remember much about It. All i know is that Martin had a very upsetting night indeed.

So here we are Catherine and I (she has been brave enough to stay with me over night) in a nice cosy little 6 bed bay we are sharing with another lady. The docs all decided to try for peripheral access first ''you'll be lucky I thought''. And sure enough I thought, after 3 tries failed. Then we met super Dr David who much to my amazement succeeded first time and whats more the first unit of blood wizzed through and as I type the second one is just starting. How fantastic!!! one down 3 to go. Maybe i will get home tomorrow after all.

Just in time to go to St Marys for a few days restpite whilst Martin goes to France with some mates to play golf!!!

Next Tuesday I start Radiotherapy on my right shoulder (which may or may not be fractured- the docs can't make up their mind) I've only got 5 fractions to have this time so it will be all over in just over a week and wont interfere with Martins golf ( heaven forbid!!!)

and he moans about never getting chance to play.

There are no words...

2010-03-23T02:50:00.000-07:00

Jane is just about to be admitted as an acute emergency to the cancer ward at Birmingham's QE Hospital.
She attended the cancer clinic yesterday for a routine visit and xray on a possible tumur in her right arm. The xray showed that her right shoulder was factured. At that point I saw the moment in her face where she gave up. A complete resignation from life.
I sat with her through the night, along with Caroline and Trevor our closest friends. This morning I have had to phone James to come home.

Please keep her in your thoughts and prayers.

Martin

ALL IN VEIN

2010-03-13T14:02:00.000-08:00

' Your blood count is still low, you're going to need another transfusion' said Dr P. That's OK but with Jane's veins, the search for an adequate vain is usually impossible and that's exactly what happened at the hospice the other day. One bag went in very slowly then the vein collapsed and that was that.
We went back to see Dr P on Thursday and it was agreed that we should explore the possibility of a Hickman Line which would mean no more needles. Anything is better than being stabbed to death in the hand for no result. Also, due to Jane's continual pain in her legs and the MST not appearing to be working, a change of pain killer was prescribed. She started it on Friday so standby for an update on that one.
All things considered, Jane is not doing too badly. She still finds it difficult to walk any distance and gets easily frustrated and emotional when things don't go so well. She is insisting on cooking a chicken dinner tomorrow (mother's day) as the whole family are in situ (James is back from a 3 week holiday in Korea before he returns to base).
Should I dare sneak out for a quick game of golf whilst she's cooking ?
It would be a brave move indeed...... lol

Martin

Supermarket dash !!

2010-02-24T13:23:00.000-08:00

I've had a week off work to get a bit more exercise at the gym, play a little golf and generally relax a bit and if all goes well, get Jane out of the house. The weather put paid to the golf, a pulled shoulder muscle done for the gym so that just left me and Jane. Today, we went to Tesco's for the twice weekly shop. This is usually done on line lately but today we decided to put an appearance in person.
The weather was positively tropically compared to recent temperatures and we got a disabled spot right next to the entrance. I entered the store looking for a wheelchair with basket. Then I saw it... the electric buggy with huge basket on front. Two minutes later, I'd got the keys and was heading back to where I'd left Jane. NO NO NO were the words that met me as I appeared in front of the car. ' Oh come on, you've raced a sports car around Silverstone.. how hard can it be..' Five minutes later Jane was racing down the isles with a strange manic grin and her nico inhaler gripped in her teeth. Did anyone watch the TV series Benidorm.. the lady in the wheelchair who was a menace...!! The usually crowded isles suddenly became fairly empty, can't really say why !!!
It was a good morning all round and most importantly, I think Jane enjoyed herself.

Martin

Difficult times...

2010-02-09T12:00:00.000-08:00

Its been a bad couple of days for Jane. She has been in some serious pain down her right side from shoulder to hip to knee. Proper pain control is vital for her which went all wrong today as she has a cold and nasty sore throat. Just after taking her MST this morning she started coughing, was sick and we weren't sure whether she had lost the benefits of the drug. We aired on the safe side but it soon became apparent that she was down on pain relief. She looked drained and for the first time, ill.

I offered words of encouragement and we worked to get her pain relief levels back up again within the correct time period but I think the damage had been done. She began talking about, "after I'm gone" and "you know what type of funeral I want don't you "

By chance, there was a clip on the news this evening about a Bristol kidney cancer patient who was on a trial with Afinitor and how it has extended his life by 6 months. Some stats came up saying how the drug can extent patients' life by up to 5 months as opposed to 2 without it. Jane is now into her 6 month on the drug not to mention the many months on Sutent before hand. For that we are so very very grateful and thank those responsible, manufacturer to prescriber from the bottom of our hearts, the extra time has been priceless to us.

Martin

Goal !!

2010-01-30T12:22:00.000-08:00

It would appear that Janes' new drug is having an effect on her blood count. Her HB levels have been right down and she has had to have a transfusion last week (two bags). However, we went for a blood test on Thursday and they were still down. Dr P is convinced it is the new drug but just to be sure we are having three more bags next week.
Having said that she reached one of her goals today... she made it up the stairs with just the use of her crutches and had a shower.. that is the first time she has been upstairs since her femur trauma many weeks ago. Oh yes .. and she found time to comment on the state of the bathroom !!

Tiredness is still a big problem and her legs ache dreadfully but the stairs have been conquered.. she'll be wanting to sleep in the same bed next, just when I've got used to a lovely king size all on my own..!!

Martin

Deja vu... or whatever the french is..

2010-01-19T07:37:00.000-08:00

Jane has gone back into the hospice for a couple of days..

Her HB was right down on her blood count probably causing the persistant tiredness. A blood transfusion was offered and she could have it in the hospice. I took her in this morning and left her with some familiar faces from her last visit. She asked me to post a short message to let everyone know whats happening.

'Snow Joke'........

2010-01-10T10:54:00.000-08:00

It hurts - oh Lord it hurts. Everday I expect it to get better, for my legs to be a little bit easier. For walking to be a little more comfortable. But it isn't. They both still hurt and it takes a huge amount of effort every day to get out of bed and get my legs moving. It's SO tempting to stay there, all nice and warm and comfortable. I really didn't expect it to be this painful for so long - although having both legs done together can't have helped.

The infection in my right leg has cleared up and the wound is slowly healing. But just as one positive thing happens another negative one comes along. This weekend I've had a pain under my right breast, where there is a tumor on a rib, which has got increasingly worse. Last night it was unbearable. Nothing relieved it. No amount of pain killers and no change of position helped. Mary came round first thing and after examining me and consulting with Dr P. they decided Ive probably got a fracture in that rib. So my morphine has been increased once again with some ibruprophen thrown in for good measure. If it is a fracture there isn't much that can be done about it - it will heal in it's own good time.

Ofcourse I immediately jumped to the conclusion that this was a sign of progression and got quite upset until Mary pointed out it wasn't. Especially as all the other tumors show no sign of growth at all. I guess I just have weak bones which break easily where there is a tumor present. On Thursday I'm going for another infusion of Zometa which should strengthen them and help prevent them breaking again.

Generally I'm feeling pretty rough. No appetite, nauseaous all the time, tired and depressed. Mary thinks I could be aneamic again and the blood tests I'll have on Thursday will answer that. But I'm not sure how to deal with the depression. Iv'e never had it before. I've always been able to look on the positive side of things but at the moment I can't because I can't find any !

Today (Thursday) Martin and I managed to get to the QE for my blood tests - despite the weather which has been dreadful here. Yet more snow is disrupting the traffic here and its so COLD outside. I don't notice it generally because I don't go out - but when I do it is freezing!! We have had snow on the ground since before Xmas and several nights the temperature has fallen below -10c. Edwards school has only closed for a couple of days which is pretty good considering a lot of schools have been shut for days on end.

..update

2010-01-05T13:25:00.000-08:00

This is proving to be a long and very tiring road. Jane's leg has still not healed so we cannot start the physio she so desperately needs to get her strength back. She becomes exhausted with just a short walk with her frame and then gets upset because she is so tired.
I must admit that continually looking on the bright side has become a little strained lately because progress is so slow. The UK gripped in the big freeze and the moment doesn't help either. At present, like most places, it is snowing heavily and the prospect of having to walk to work tomorrow is a real one. There just seems no end to it, up early, get Jane out of bed with a coffee, cook her something to eat, help her wash then back to bed, then get myself ready and off to work. Poor Ed, her seems almost forgotten in the mornings as he left to fend for himself. Then in the when I get home, make sure Jane is ok, start the evening meal, do a washing load and then sit down and have to watch 'most haunted' because Jane has got the remote for the 'sky sports' tv. AND THE GOLF COURSE IS SHUT..!!!

Martin

The long road ahead.....

2009-12-26T09:05:00.000-08:00

Yes, it's me at last. Finally I feel well enough to sit here for a few moments and type an entry. It wont be very long - just long enough to say thank you to everyone who has sent me Christmas wishes/cards/presents. And to say thank you to Martin for keeping you all up to date with what's been happening here. Not a lot has changed - the wound in my left leg is still open and weeping a bit although the antibiotics seem to have worked and the infection is at last clearing up.

Such high dose anti biotics, taken over a long period of time, have several unpleasant effects too. They can make you feel very 'down', supress your appetite, give you thrush and make you feel very sick. But at least they are working at last.

Christmas was a very quiet affair here with Martin doing all the cooking. And a wonderful job he did as well. I must remember when Im better to let him do more cooking !! The weather has been very cold with quite a lot of snow about which made driving very dangerous on several days so it was nice for us all to hibernate and do nothing but keep warm and watch telly. Not that I felt like going out anyway - this feeling of complete and utter exhaustion wont leave me for more than 5 mins at a time. Every bone and muscle in my body aches and my legs permanently hurt still. Im desperately hoping for an improvement in this very soon. Im trying to do a little more each day - walk a little further round the house - stay out of bed a little longer each day etc..

Thursday I go to see Dr P. again - I shall report back on what he has to say.....

..update

2009-12-23T09:41:00.000-08:00

Jane came out of hospital at the weekend. Her vein had collapsed making it impossible to the deliver the antibiotics via IV. When the Dr said she should take them orally, she was out the door and on her way home.
Since then we have had a procession of district nurses in to change dressing etc... Jane herself is quite down at the moment due to the slow recovery. We have had some tearful moments recently and it had been hard to try to get her back on track. The situation remains the same, she still has an open wound on her leg that is being treated daily to stop infection, along with high dose antibiotics. This is proving very upsetting for her because she cannot see any improvements. She still struggles to walk short distances even with her frame and is constantly tired. We did go shopping for the first time yesterday, to buy the Xmas turkey. She did really well with the aid of a wheel chair but that's the most she has done in about six weeks.

It is now snowing heavily after a week of freezing temperatures. It can only get better from this point......

Happy Christmas, Martin

...further

2009-12-18T12:13:00.000-08:00

Jane has gone back into hospital for IV antibiotics. I took her in at 3pm this afternoon following a conversation with her surgeon's nurse. It is likely she will be in until about Tuesday. Without being unkind I think it is the best place for her at the moment because it was becoming extremely stressful having her so poorly at home. This way they have the staff and equipment to deal with the infection properly once and for all. I think tonight I will sleep a little deeper knowing she is in good hands.... Martin

..update

2009-12-17T11:50:00.000-08:00

Jane is still fighting an infection in the operation site on her right leg. She is at home and is able to read emails and comments on the blog however to sit still and write an entry is beyond her best efforts at the moment.
We hope to attend the surgeons clinic this Tuesday to either get the all clear on the swabs or go back into hospital to explore what is going on in there. The other leg, the main operation is all fine. Ironic isn't it !!

Martin

...update

2009-12-09T09:04:00.000-08:00

Jane has asked me to post a quick message.... she is still at home but feeling quite unwell. She has contracted an infection in one of operation sites on her leg. We have had swabs taken for analysis so the correct antibiotics can be prescribed but as you can imagine the infection is causing her a lot of upset.
We hope to get her on the path to recovery very soon....

Martin

If it's Tuesday it must be Wednesday......

2009-12-01T09:18:00.000-08:00

(Actually it IS Tuesday - Tuesday 1st December and I have just arrived home. The following are from notes I made whilst in ROH)

I've lost a day.
A Tuesday.
Goodness knows where it went.
It was there one minute and gone the next - I've actually had an argument with a nurse over what day it is !

It is in fact Wednesday 18th November and I should be in London today attending the James Whale Fund Cancer Patient Day - as their patient representative.
I'm so disappointed - I was really looking forward to taking part in the whole day, especially being the patient representative on the Q & A session in the afternoon chaired by my old mate Nick Owen.
Anyway - it can't be helped. And at the moment I have more important things to occupy my mind.

You may recall my mentioning that on the scans of my femurs there was a tumor, a smaller one, on my right femur. Well Mr Tillman has strongly suggested we deal with this tumor now before it causes any real problems like fracturing as the left one did. I don't think I could face going through that dreadful experience again. This operation would be smaller, the tumor and infected bone cut out and a metal plate 'concreted' into its place. This could actually take place next Monday (25th) so with a bit of luck I could be home at the beginning of December. Just in time for Christmas.

But what a horrible decision to make. I could be home in a few days if I decide to put the operation off until after Christmas. But then I would have to go in again and go through it all once more. It seems so unfair. There were a few tears and tantrums until I finally decided to get it over with now - and signed the consent form for 25th November.

Please God let this be the end now? No more operations please - whether on a Tuesday or Wednesday or whenever. Please no more pain. I've just started to mobilize with a zimmer frame and now I have to take a step backwards and have the other leg done.

So once more I'm off for another operation. Which has to be the last one because at the end of the day I've only got two legs !!

...update

2009-11-26T03:16:00.001-08:00

Jane is managing to walk short distances using a zimmer frame. Progress is slow and she gets quite upset with her inability to be already running up and down the ward. She seems to have her appetite back and all her readings are good.
She has been told she could be going home by Tuesday next week. Fingers crossed...

...update... "its twins"

2009-11-23T05:41:00.000-08:00

.... her words not mine that accompanied a big smile and a big hug as I walked into the recovery room. This was greeted by lots of laughter from the nurses and an even bigger grin from me.
Her operation went really well and she looked a lot better than she did after her first op. She had an epidural in which was helping but I think generally she is much better shape.

The real hard work starts now with the physios so we can get her back on her feet and then back home. We all miss her dreadfully.

Many thanks for all your kind words and support. She will be kept busy reading them all when she can get to her PC.

Martin

...recovery update

2009-11-18T05:17:00.000-08:00

The operation went well and Jane is now off the heavy duty pain killers. The physios went in this morning and got her out of bed on a frame. The first time she has stood up for a month !!

The consultant is is so happy he wants to do the other leg !! Jane had a choice, to wait two or three weeks and then go back in OR have in done this Monday. A smaller operation than the other one involving drilling out the affected bone and replacing it with special cement. He is concerned that if it did brake we would have the same scenario. Poor Jane, she thought she was coming home soon.

Well after much heart wrenching and a few tears, she is going to have it done on Monday. I think the thought of the other leg breaking was too much for her. It means she will be in hospital all next week. I will keep you posted.

Martin

...update 16/11/09

2009-11-16T14:05:00.000-08:00

At 2pm yesterday afternoon (Sunday) Jane was transported to the Royal Orthopedic Hospital in Northfield. She said a tearful goodbye to the staff at the hospice and went on a very slow ambulance ride back to the ward she had left some three weeks before.

Today at 1pm, two burly porters wheeled her bed down to theatre. I was with her all the way. I don't think I had a choice judging by the vice like grip she had on my hand. She was greeted by the staff who did their best to put her at ease. One of the nurses recognised her from when she used to take the children to junior school, her daughter was in the same class as our eldest, James.

The anaesthetist spoke gently to her and gradually she fell asleep. I must admit I went home with a few tears in my eyes and tried to get on with some housework. Couldn't concentrate so I went on a golf ball walk instead.
* We have a local beauty spot just up the road called the lickey hills which incorporates an 18 hole golf course. We used to take the children there years ago and there was an ice cream for anyone that found more than 3 balls. (I was too stingy to buy any when I played). We take Grace there now and its a good place to think about things especially when its blowing a gale and raining. I found two today but I wasn't trying very hard !!

I cooked an early tea with Catherine and Edward as I was expecting the phone to ring around 5pm. It did, the hospital and Jane was in recovery. All three of us wolfed down the remainder of the stir fry, jumped in the car and headed for the High Dependency Unit. Jane was sat up but obviously in lots of pain. She had a morphine pump and lots of drips. The operation had gone well but she was experiencing a lot of pain, not unusual for such a big op said the doctor. It was more complex than just a routine knee or hip replacement.

We stayed until 9.30pm, stuck the morphine pump in her hand and said our goodbyes. I shall go in to see her in the morning with Catherine who will stay with her all day tomorrow and then hopefully back on the ward to begin her recovery.

Martin

The Fear Factor

2009-11-14T22:42:00.000-08:00

Most of us will happily admit to a fear of something funny or irrational, like snakes or birds or balloons etc...but to acknowledge you are scared of something which is entirely understandable seems to be cowardly in some way. You are expected to be brave.

Well I'm scared about Monday - very scared as a matter of fact. Just thinking about it and my stomach turns over.

Maybe that's the problem?
Maybe just lying here I have too long to think and worry about it?
For instance, the anticipation of pain can be almost as bad as the pain itself. Just knowing I'm about to have my traction re-done - and how much it will hurt - is enough to bring tears to my eyes, literally. Before the first wave of pain hits I can start to cry, knowing whats coming. Does this make it worse? Yes I think so. Any tension makes pain worse. And yet who can honestly say they 'relax' when told to do so by a doctor knowing full well something IS going to hurt?

Fear is the same kind of thing. Its only there when you think about it - or have the time to.

That's why its 6.30am and I'm wide awake with unwelcome thoughts running through my head - and I'm scared.

Of what exactly?
I'm not exactly sure when I stop and analyse it.
Dissecting something, fear or otherwise, always helps to diminish its power.

So Im lying here trying to work out what exactly I'm frightened of - and if I work it out Ill let you know !

...update 14/11/09

2009-11-14T10:35:00.000-08:00

Jane's operation is scheduled for this Monday 16th Nov. She will be moved back to the Royal Orthopedic Hosp tomorrow afternoon to ensure she has a bed.

Jane is OK but desperately wants it over a done with so she can come back home. The staff at the hospice have worked wanders keeping her spirits up but she is in so much pain even with just a simple bed wash let alone changing the leg traction every morning. Morphine helps but it has its side effects such as sickness and continual tiredness.

She has had her blood transfusion today in readiness so fingers crossed that all goes to plan for Monday

Martin

Day 18 of being tied to a bed.......

2009-11-09T13:20:00.000-08:00

It's ok to feel down sometimes.

It's ok to allow yourself to have a bad day - an off day.

I had one of those yesterday - today wasn't that great either !

I felt 'dopey' - in a kind of semi coma, drifting off to sleep all day. Not hungry at all. It was very strange and most probably down to a mix of being tired, still being constipated (everything is still very sluggish due to my lying in bed now for 18 days having no exercise whatsoever) all the drugs I'm now taking and generally getting more and more bored and fed up. I actually dream about getting up, walking and sitting on the loo !

Today was a bit better - but my appetite is still non existant and I still feel sleepy most of the time. And tomorrow I have been promised my sluggishness in the bowel department will be resolved, one way or another, finally. So I could be in for an interesting day!

I've also made the decision that tomorrow will be different. I will be positive and upbeat and awake ! Two days is long enough. Yes, being stuck in bed with a fractured leg, often in pain, can be depressing - boring - annoying even. But its only for another week - just one more week before I can get on my feet again.

I'm not quite sure how long the rehabilitation is after an operation like mine - I'm hoping most of it can be carried out at home though and I can have an 'early release'! I will have spent way too long in hospital as it is (almost a month!!) and I'm sure the community physio's will be able to deal with me. I know it will be a strange sensation being able to both sit up and walk again after so long.

I miss my home - and Martin - and the kids - and the cats - and the garden - badly. Ive never been away for so long. Its horrible. I try not to think about it too much or I get upset, and there is no point.

I'm trying to do something positive and productive every day to make the time count, but it's not easy when you're tied to a bed !

Pass the prunes......

2009-11-06T06:42:00.000-08:00

Morphine is undoubtedly a great pain killer. But it has one side effect which is much misunderestimated. Constipation. Not a nice subject to write about I know, but it is the reality of being on MST.

Being constipated is well and truly awful.It makes you feel dreadful - your head is all fuzzy and you can feel faint and sick. Plus of course you can get horrid pains in your tummy. Ive been lying almost immobile in bed now for 15 days - and my gut has responded by going on strike. I'm still eating well - but little is coming out of the other end!

Today it made me feel REALLY ill for the first time - my dearest wish is to be able to get out of bed and sit on the loo - not to have to try to use the bed pan lying down.

Things came to a 'head', literally, today when the doctor prescribed me some suppositories. The poor nurses on duty drew straws for whom would have to deal with the results of such a drastic turn of events - we are talking of almost 2 weeks worth of beans on toast and prunes for breakfast!!

Anyway - suffice to say that the suppositories worked, I feel 100% better and in my point of view my nurses are complete heroes/heroines!!

St. Mary's Hospice, Birmingham

2009-11-05T06:56:00.000-08:00

The moment I was pushed through the front door of St. Mary's the effect was instantaneous. My shoulders detached themselves from my my earlobes and I relaxed for the first time in days - weeks really.

Here I knew I would be safe.

Here I knew I would be listened to and not have to repeat my medical history endlessly to doctor after doctor, nurse after nurse - and then have it forgotten or ignored.

St. Mary's is a shining example of the Hospice movement.

The standard of nursing care is the highest I have ever experienced - but its more than just that. Its the genuine, sincere, kindness and empathy that is all encompassing from every member of the staff and volunteers here. Instantly you feel part of the one big St. Mary's 'family'.

Most of all, for me, I have so appreciated the wonderful sense of humour that flourishes here. I don't think I have laughed so much in ages !! Even the daily ritual of changing my traction is accompanied by much raucous laughter - and as someone who strongly believes it really is the best medicine it helps enormously (along with the gas and air of course!)

I could write all day about how fabulous this place is and name every member of staff for the special qualities they bring to their work every day - but I would just like to say this.....

Thank you St. Mary's.

Thank you on behalf of all of us patients for reminding us the time we spend with you is about LIVING - and enjoying every moment to the full. (And a special thank you to Mandy on nights for the endless cups of coffee she makes me and to Chris whose zany sense of humour keeps me sane at times - just!)

The food is absolutely excellent. Very healthy with plenty of fresh veggies and fruit and has that lovely 'home cooked' quality.

I have been overwhelmed by the kind comments and flowers I have received whilst a patient here - my room looks like Barbara Cartland's boudoir!

St. Mary's is a charitable organisation and relies almost completely on donations or legacies from the public to keep up the wonderful work they do. When I'm fit and well enough I shall be joining in with the fund raising here and if anyone would like to contribute a donation I know it would be put to very good use.

http://www.bsmh.org.uk/

12 Precious Days......

2009-11-04T22:59:00.000-08:00

Thank you Karen.
Thank you for pointing out what should be obvious, especially to me right here, right now.
12 precious days which I can put to good use - and fully intend to.

Every day is precious - every day is special. And for each one of the next 12 Im going to to do something to make it remarkable in some way !!

Day 13 of being tied to a bed......

2009-11-04T10:00:00.000-08:00

.......it sounds like the title to a 1970's German porn film doesn't it? Except it isn't - and I have just been given the date for my operation.
16th November.
That's another 12 days.
I'm trying not to get too downhearted about this. But it isn't easy.
The prosthesis wont be ready until 13th November so there is nothing can be done and Mr Tillman is putting me at the top of his next list.
But another 12 days !!
That will be almost a month I shall have been lying in this bed. The nurses and I are trying to work out a way of my having either a bath or a shower whilst keeping my leg in traction, which could prove interesting. So far I have managed with all over washes. 'Interesting' maybe is the wrong word - has anyone ever tried to poo whilst lying down in bed? (whilst sober?) It's not easy. Not at all easy.
But another 12 days !!
That's a week and a half !!
I must find something to do - something to be positive about.

I was really pleased with the article in 'Yours' magazine today. It will really help raise awareness of both Kidney Cancer and the new life extending drugs used to treat it. And what a beautiful photo of Grace (wasn't that bad of me either considering!)

But another 12 days !!...........

Return to the Bucket List.

2009-11-03T05:42:00.000-08:00

The past 12 days Ive spent lying in bed, unable to do very much, feeling totally vulnerable and completely reliant on others for the most basic of needs, have been so frustrating. Its no wonder Ive felt so despondent at times - and then very angry with myself for feeling this way. Its been a vicious circle of pain relieved by morphine which has sent me a bit 'loopy'.

However, we have discovered that 'Entonox' (the 'gas and air' stuff that ladies use in labour) is really effective for when I have my traction changed. Its quick acting and short lasting so I don't spend the rest of the day floating around on 'Planet Morphine' having interesting hallucinations and conversations with people who don't exist! Its not quite as good at relieving the pain, after all this is a broken femur we are talking about, but it takes the 'edge' off it so I can bear my leg being moved whilst the bandage and traction is re-applied.

Talking of the 'break' I saw it in all its glory on the xray/scan and a right mess it is too. Not a clean break at all, both ends of the bone have crumbled and split into many pieces. No wonder its so painful when I'm moved with them all grating against each other. Mr Tillman is going to tidy up the ends, remove the bits of tumor and then insert the bionic femur - and I will be better than new ! I also saw the tumor in my right femur which is much smaller, contained within the cortex so the bone is intact, and looks fine - to me anyway. Obviously we will be keeping an eye on it but it looks as if we have caught it in time.

I'm just finishing week 4 of Afinitor and all the signs so far are that it is working - and working well !! No growth in the tumors I can feel and the only side effect I have noticed is a sore mouth. I'm having some blood tests done tomorrow just to check things are going well, but I am allowing myself to be really optimistic that Afinitor is working as a sequential treatment for me. And what fantastic news this is for every KC patient here in the UK.

So there we have it. I'm back on track again after a short but fairly nasty deviation! And now I feel I'm ready for some kind of challenge - something to test out my new bionic leg and to renew my faith in 'me'. A return to my 'Bucket List' is called for I think.

My 'Bucket List' -things I want to do before I kick the bucket - has been sadly neglected of late. There are several small things left on there - and one BIG one. So Ive decided to go with the big one. I may as well. I think a BIG one is needed right now after all Ive been through.
One last adventure.
One last fling at the world.
But where?
There are still so many places I would love to see.
And more importantly how? Martin keeps reminding me I need to earn some money or I shall bankrupt him before I pop my clogs!! Ill start to save seriously now and who knows maybe some magazine/news paper would be willing to sponsor me as a cancer patient to write about my experience?
So - where would I like to go for this final big trip?
There can be only one place, one final frontier for me - Canada. The Rockies and the Inner/Outer passageway up the coast visiting the towns made famous during the gold rush, Skagway etc. A spectacular trip all round but most importantly its the last Great Wilderness for one last great adventure.

A chance to prove a cancer patient CAN.

And for those of us who arn't going to win the final battle in this war, we can show that, even in the process of losing it, we can gain such a lot.

Sooper Dooper Traction Thingy for sale.....

2009-11-02T08:20:00.000-08:00

Many, many thanks to Tony, the IT specialist here at St Mary's, for fixing me up with my own PC right here in my room. So now I can blog and email away to my hearts content without having to bother the nurses to push me around in my bed.

Its such a relief to finally be here, especially as there were times when I thought I wouldn't make it. NHS bureaucracy drove me to the edge of despair last weekend. St Mary's were willing and keen to take over my care but the ROH were reluctant to lend a small piece of equipment I needed, an attachment for my bed to keep my leg in traction.

Just a small piece of metal. Nothing high tech. or computerized. Just a small 'block and tackle' type metal thingy. St Mary's didnt have one and the ROH wern't willing to lend it out.

How ridiculous was that?
In floods of tears I pointed out to an NHS Manager (grrrrrr...) that wherever I was the traction thingy would be, be it here or in St Mary's or in the blooming car park. I wasn't depriving anyone of it. St Mary's tried to order one specially for me but it would have taken over a week to deliver it. And the ROH just wouldn't listen to reason. In the end I was in utter, utter despair and feeling completely helpless. What was the point in fighting cancer I thought when it felt like the enemy right now was the NHS and its stupid rules and regulations?

The negativity I was experiencing was pressing me down, making me unable to think of anything else. I was frantically searching for something positive to hang on to when all I wanted to hang on to was the neck of the NHS manager and squeeze - very hard !!

I couldn't see past the end of this episode - beyond the operation that will put me back on my feet both physically and psychologically - because this is not like me. Not like me one bit and the one thing I want to provoke in others is inspiration - NOT commiseration.

Finally someone saw sense, although not without much signing of forms and swearing of oaths that the traction thingy would return with me for my operation (what did they think I was going to do with it? sell it on Ebay?) My spirits lifted immediately.

I can get back to the job in hand.

Fighting mRcc and sticking pins in a little voodoo doll of an NHS manager !!

...update from Martin 31/10/09

2009-10-31T12:44:00.000-07:00

Jane says Hi to everyone and thank you for your kind comments and flowers. They have really cheered her up. She unfortunately cannot get to a puter until Monday which is a shame because she is itching to post and bring you all up to date.

I am fortunate to work only a couple of miles away from where Jane is and am able to pop at lunchtimes with my sandwiches and watch her eating her three course meal !!
Yesterday I popped in to be told she had been 'wheeled' down the day room where a live guitarist was playing for the patients. I entered the room at the start of the second chorus of 'why why why Delilah' and witnessed a nurse throwing a pair of knickers at the unfortunate fellow. He was even more put off his stride when he discovered that they were a pair of 'Y' fronts !!
Jane was lying on her bed, arms swaying in time with the beat and I'm sure she would have the next to throw, if she had been wearing any !!

As you can gather things are a lot better for Jane and her condition has improved greatly for someone with a broken femur. She is being looked after by a great bunch of people who are well up for a laugh. The food and room are fantastic which goes a long way when you're stuck in a bed.

Jane and her Dr think that next Wednesday will be the first they hear about her operation as it has taken time to order the 'part'.

Oh.. from Jane, don't forget to get your copy of 'Yours' magazine (out 4th Nov) where there is an article written about her fight against Cancer along with some rather 'fetching' piccies.

I have just left her 'eyeing' up OK magazine and jotting down the editors web address... I think its a good job she can't get to a keyboard..!!

Martin

Can we fix it? - Yes we can !!

2009-10-29T08:46:00.000-07:00

Today is Thursday 29th October and thanks to the kind ladies here at St, Mary's I have been allowed to use their computer and update my blog. Although there are huge gaps in my memory as to what exactly happened when I was in The Royal Orthopaedic (Martin, unfortunately for him, has a very vivid picture) I'm going to try and remember best I can.

Saturday was the first day I was aware of where I was and knew roughly what had happened. I 'came round' in my room with an absolutely exhausted looking Martin sitting next to me with his head lying on my bed. He had been sat there since Thursday afternoon (I think), afraid to leave me because I was unable to operate the PCA (patient controlled anaesthesia) which was delivering the morphine I still needed. He looked dreadful. Honestly, I know Ive said it before but my man is a hero. I'm convinced he saved my life that weekend by staying with me hour after hour, and staying awake. Goodness knows what would have happened if he had left me. Its probably a blessing in disguise that I cant remember anything that happened prior to then.

It was a small, but very clean, room I had with just about room for the 3 nurses who were standing round my bed discussing the 'traction' I needed to stabilize my leg. I didn't understand what they were talking about, plus I was still very confused and spaced out from what had happened. I kept slipping off to 'Planet Morphine' complete with some very interesting hallucinations. I think the trauma to my body hadn't helped either and I was still in shock. So I felt very vulnerable and frightened and just clung on to Martins hand for dear life.

Martin did understand, however, the importance of stabilizing my leg, of keeping it as still as possible, as this would reduce and control the excruciating pain I was still experiencing every time it was moved even a fraction.

Mr Tillman, the orthopaedic surgeon, came to see me then and explained the procedure he intended to perform to 'fix' my femur. This would involve inserting a specially made plastic and silver 'rod' into my left femur where the bone had crumbled. It would take a week to 10 days to make this special 'rod' to my measurements and in the meantime I would stay in hospital on traction.
A week to 10 days???

Still, there was nothing I could do about it and I brightened up when told I would be transferred to St Marys on Monday and so spend most of the time there.

So, back to this 'traction' and what it would entail. Nothing surgical, a tight bandage would be wrapped around my leg from top to bottom and a weight attached to my foot to hold it straight and stop the bone fragments from grating against each other - a really, really unpleasant sound !! I was told it may prove a little painful when first done (understatement of the year!) but should be easier from then on as it would need repeating daily.
The first time was, quite frankly, a complete nightmare. Even though I still had enough morphine in my system to drop a fully grown elephant the pain from the bone fragments rubbing together soon had me screaming and crying and mauling poor Martins hand. It seemed like ages but within a few moments the traction was on and the relief I felt was instantaneous. At last I could relax a bit and Martin could go home for a well earned shower and rest.
We thought the worst was over but there was still more to come.....

...update from Martin

2009-10-26T13:44:00.000-07:00

Monday 26/10/09 ..2030hrs. Just come from hospital. Jane never made it into the hospice today, some problem with a piece of equipment for the traction.. ie. the hospice haven't got one and the hospital refused (initially) to lend them one... People have now come to their senses and she will be taking the one she's got now with her.. as long as she brings it back.. I know.., Jane was at her wits end and I was beginning to feel the strain.
Jane is still in a lot of pain, MST's and oramorph still on the agenda.. the morphine pump has now been dispensed with as when she asleep there was no one to press the pump. When they change her traction or sheets she needs gas and air as well... good old gas and air. This evening I took her in a double chocolate chip chocolate muffin, cashew nuts, tonic water and bags of aero chocolate balls and got the biggest smile of the evening... it was good to see her smile again.

Fingers crossed we get to the hospice tomorrow as we found out this evening, most of the hospital nursing staff didn't realise she has cancer...

Martin

Rock Bottomest

2009-10-25T13:48:00.000-07:00

I asked Martin to write his version of the events of Thursday and Friday because, as you will see, as from Thursday afternoon I was completely 'out of it' on a very high dose of morphine indeed. But back to the beginning, Wednesday morning I had woken up with my legs more swollen and more painful than ever which was disappointing as i was expecting some improvement by now, 48 hours later i thought i would give Mary a call and see what she thought. Mary thought the same as i did - that i should not be suffering such excruciating pain and swelling now - and that i needed to be an inpatient at the hospice. I left Mary arranging my admittance to St Marys which would be on Friday morning.

The rest of Thursday i did very little, Cat was off work and decided she would cook roast chicken for us that evening - and very nice it was to! I had been sitting in the little wheel chair all day, scared of getting out of it in case it hurt, so by the evening the inevitable happened - i needed the loo. We, the whole family, uhmed and arhed for a while deciding how to do this. Martin and Edward would help me stand and hold onto the zimmer frame and Cat would hold the 'pot'. OH MY GOODNESS - THE PAIN, THE PAIN!! MY GOD THE PAIN!! I was screaming, sobbing and crying, it was simply awful for the kids to see me like that. They were all crying too. I decided then and there that i was going to stay in my chair all night as i wouldn't be able to get out of it on my own. Martin wasn't very impressed by this idea but what choice did i have?

Cat was going out with her friend Donna but would be returning about 1:00am and would sit up with me for a while. Sure enough, Cat and Donna came home at 1 ish and stayed up chatting and watched tv. During this time i decided i wanted to put my feet up, on a low stool. Getting them up was easy enough, but getting them back down was awful - crippling pain - and i was finally convinced something was WRONG - very wrong. Cat called the emergency doctor out - and this was the first time 'break' had been mentioned. He said he thought he had broken my left femur. The doctor left a letter for the hospice which arranged me to have a x-ray on the way there in the morning. He gave me the option of going into the hospital that night via 999 but i refused - I would wait till the morning and have a 'temazepam' to relax me.

It was a long night - Cat, Donna and I was watching an old tv detective series then Donna fell asleep on the sofa. Martin was up early showered and on the phone to St Mary's to learn an ambulance would arrive before 11am, which it did. Fortunately I was asked to stay in the wheelchair to go in the ambulance. It was only on arrival at Selly Oak Hospitals A&E Department, that i needed to be transferred onto a trolley to go to x-ray - and this is the point where i lose the plot - and Martin takes over.

JANE'S HAD A BRAKE !!

2009-10-24T07:50:00.000-07:00

This is Martin writing and yes I have spelt brake correctly. Jane is currently in hospital with a broken left femur. Let me tell you what happened....

On Monday this week she finished her final radiation session. All was going well, the usual swelling and difficulty walking followed but with the thought ' it was all over ' tempered all of that. However on Wednesday her left leg became extremely painful and the swelling increased. So much so that we contacted the hospice where Jane was due to go for rest bite in a couple of weeks. The arrangements were changed and Jane was going to go in on Friday for a week to give everyone a rest. Wednesday night, Catherine and her friend Donna volunteered to stay up with Jane as the pain and swelling were getting worse. On Thursday morning I was informed that at 4am they had to call out a locum who pronounced that it looked like her leg was broken... What !! but she hadn't done anything, I want a second opinion..!!
I telephoned the hospice who said to take her to the local A&E to be sure. The ambulance duly arrived at 1045am and taking one look at her leg and her face, didn't try to move her but wheeled her straight into the ambulance using her own wheelchair where she had now been sat for 12 hours without moving.
A&E had been pre-warned by the hospice and she was wheeled straight into a cubicle where she waited.... and waited... and waited. It took another frantic phone call from me to the hospice who in turn telephoned A&E before they sprung, snail like, into action. I can go into lots of detail here but I wont suffice to say that in the end there were 4 A&E nurses, one consultant, a physio nurse and 50.. yes 50 milligrams of morphine before they managed to get her out of the chair and onto a trolley. The screaming was unbearable at times and I was in bits. A subsequent X ray proved her left femur was indeed broken right where the tumour had eaten away at the bone. Disaster!! Jane was put into a recovery room where she was monitored up and I spent a while explaining that she had actually seen a bone specialist a few weeks earlier and they had talked about this eventuality.
That evening she was transferred as an emergency to the hospital where that specialist works. Once again, I had to explain her case history and try to remember what medication she had been taking or was due.. (note to self .. write this down prior to anything else happening). There then followed a long, very painful and traumatic night.. for both of us. Jane was delirious with the amount of morphine but still in pain. I was stressed to the max at her predicament and still remembering medication that she should have had and had been forgotten. My God, that has got to be the worst 24 hours of my life without a doubt... (so far).
Morning came. The staff had fitted a morphine pump that I was operating for her quite illegally apparently but it was the only way to maintain the levels of morphine that kept her from screaming in pain and gave her the chance to sleep.
At 0845 the consultant came and saw her and announced that he was going to order a special part for her leg to replace the tumoured bone. He could operate a week Monday....(what ??? a week Monday !!!!) Jane's face said it all. The consultant apologised but said he couldn't do it any earlier. She was to go for an X ray that afternoon to measure the femur then she could wait for the operation at the Hospice... good news at last followed closely by more bad news when she was told that the X ray machine was broken and couldn't be fixed till Monday.
So there we have it, she is in hospital awaiting an X ray on Monday (hopefully) and then onto sanctuary at the hospice to await an operation to replace a bit of bone in her leg...

I got home at 3pm, phoned everyone I knew to tell them whats happened and went to bed at 7.45 pm where I slept until 8am this morning. I have just come from the hospital now, although still in a lot of pain she is fairly comfortable...

Rock Bottomer !!

2009-10-16T18:26:00.000-07:00

Ok - I was wrong. And not for the first time you may say !
It could get worse - and it has got worse. BUT its nearly over, just one more Rx (radiotherapy) treatment to go on Monday. One more. Then its all over. Finished.

Emotionally I'm much more stable. I still have the odd 'wobble' where I don't quite 'trust' my thoughts - where I feel a bit out of control - but in general the 'madness' seems to have passed. 'Madness' isn't a term I use lightly either because that's exactly how it felt - the sheer extremes of emotions I was feeling, and reacting to.

My saviour came in two friends, Caroline of course, and Sandra. I met Sandra through Caroline a few years ago and she is cut from the same cloth - sensible, wise, funny and so kind. Talking things through with them was exactly what I needed to get things into perspective again - to appreciate what my body, and more importantly mind, was going through - that it wasn't permanent and it would pass and most of all not to be afraid. Fear exacerbates everything. And it is very frightening to lose control of your thought processes - and KNOW you are. Taking their advice Ive tried to relax and not fight it - to accept it and allow it to wash over me. Not easy but it does work.

Martin, who I thought would treat the whole thing as a bit of a joke, has been incredibly supportive, and intuitive - a word I never thought I would use about him. He can tell by the way I speak how I'm feeling psychologically - not by what I say or do. He has been calm and just allowed me to get whatever is bothering me out of my system at the time. Sitting with me while I sobbed my heart out in the garage for no apparent reason. And then trying to persuade me to sit down when I went all manic and decided I really, really needed to make a cake - right now this minute! It must be so stressful for him and he does look very tired lately. Mary has booked me into the hospice for a weeks respite on 4th November and I think its as much for his benefit as mine. I wasn't sure at first - a whole week doing nothing - but she is right. Its exactly what I will need to get my equilibrium back again and hopefully sort out my sleeping problems. And Martin can have some much needed rest too knowing I'm alright and safe.

So - what has got worse? The pain. Pain in my legs, both of them from my hips down to my knees. I can hardly weight bare now and am back using the zimmer around the house and wheelchair outside. And using an awful lot of oramorph. I am assured this is normal, Rx irritates before it starts to work and it could still be a week or more before I start to feel the benefit of it. That's ok - I can wait. As long as it does work in the end !

My radiotherapy experience has completely overshadowed the most important event taking place - starting Afinitor. All is well so far as I can tell. I still have a sore mouth but that's all. And I am checking my tumours, the ones I can feel on my head and in my armpit, and they havn't grown which has to be a good sign. So as far as I'm concerned I have every reason to be optimistic and positive. I'm seeing Dr P. on Thursday for my first check up and blood tests so I may know a bit more then.

Tomorrow Grace is coming for the day and we are going to be photographed for an article in 'Yours' magazine (5th Nov) which should prove interesting as I look absolutely dreadful right now !! All bloated and puffy and red, like a big tomato. I shall have to let Catherine loose on me again make up wise - if she plasters it on thick enough it may just fool the camera!

Rock Bottom.....

2009-10-14T11:23:00.000-07:00

Day 7 of radio therapy....Day 7 of Afinitor....7 Days since Zometa.....

.....and I think I have hit rock bottom. At least I hope its rock bottom, I cant imagine it getting any worse.

Physically my body is suffering with the radiation. Combined with the steroids I'm taking it has caused my feet and legs to swell alarmingly - in fact today I couldn't walk, Martin had to take me to hospital in a wheelchair. As planned with Dr P. I have reduced the dose of steroid to the minimum but this didn't make any difference and the radiographer today suggested I see my GP and get some diuretics. So I did. Frusamide. And I'm weeing away like mad now after only one dose so I'm really hoping it works. Apparently radio therapy is well known for affecting the lymphatic system and swollen feet etc... are common - so I may not see a huge improvement until next week when my course finishes. The pain in my legs has been pretty bad but well controlled by the oramorph I'm taking and should start to improve soon.

The physical symptoms are bad enough, the pain and discomfort - but the real struggle I'm having is psychological. During the space of an hour Ill lurch from the pits of despair - wondering why the hell I'm putting myself through this, whats the point? etc....to determined positivity, willing to endure more, gritting my teeth prepared for whatever is coming next. Ive never experienced anything like it before. I guess its a form of depression - which can be a side effect of radio therapy. Whatever it is its horrible - and exhausting. And worse than any pain in my opinion. I'm still not sleeping very well, or very much, so can spend up to 18 hours a day spinning from one mental state to the other. I also feel a bit 'shakey' and 'panicky' at times. I hope this ends soon - I'm not sure how much more I can take even though I do recognise whats happening and I know its all down to the treatment I'm receiving.

3 days after having the Zometa infusion I had a day of 'achey/fluey' like symptoms. Nothing too bad and it only lasted a day. The next morning I was fine.

Afinitor has so far been the kindest with the only side effect a sore mouth and loss of sense of taste. I can handle that easily !!

Like I said, I really hope this is it - this is the worst I get - and from tomorrow things start to improve.....because I'm really not sure I can cope with any more....

Arch to Arc Cycle Ride June 2010

2009-10-13T11:17:00.000-07:00

Kidney Cancer has always been the 'Cinderella' of the cancer world as far as fund raising and financial support is concerned. Of course there are so many good causes out there - people doing remarkable things to raise awareness of a particular disease and raise money for research.

Andy Thomas, a kidney cancer patient, and his wife Jane, are planning to cycle from London Marble Arch to The Arc de Triomphe in Paris next June as part of a team that is helping to raise awareness of Kidney Cancer for the James Whale Fund. Their target is £5000.

Well Andy - that is one long bike ride !!

Anyone who would like to support Andy and Jane can find more details here....

http://www.justgiving.com/JWFArchToArc/

To Afinitor and beyond......

2009-10-08T15:07:00.000-07:00

Ok yes, I know, I know - it's a dreadful pun but I simply couldn't resist it !

I have just, this minute, taken my first dose of Afinitor. And this morning I had my first infusion of Zometa - and my 3rd dose of radio therapy. Starting one new treatment can be a bit daunting but three at the same time is definitely the most 'challenging' thing Ive done so far!

I decided I would go to the hospital on my own - I had no idea how long I would be there, it could have been most of the day as far as I knew, and it didn't seem fair to ask Martin to take the whole day off work just to hang around in the waiting area. He has already spent what must be days there already, bless him.

At 9am sharp Dr. P called me into his room where he was ready with the head pharmacist - and my Afinitor. I know it sounds silly but I was actually really excited to see the two big boxes on his desk, two months supply, with my name on them. My blood results had come back and they were normal so there was no reason I shouldn't start taking it that evening. The sooner the better as far as I am concerned - lets just get on with it. We then spent some time discussing the dose and possible side effects, which arn't dissimilar to Sutent although Afinitor is generally better tolerated. Afinitor is taken continuously, you dont have a break or cycles. 10mg a day. Side effects can include fatigue (yes, know that one), lung problems such as shortness of breath, cough etc... It can also increase your blood/glucose levels and cholesterol so regular blood tests are needed. A sore mouth is pretty common, something I had when on Sutent during the early cycles. Afinitor makes you immunosupressed so more likely to pick up infections - and you cant have any live vaccines whilst taking it. I guess that means I wont be able to have the flu jab this year, Ill have to check with my GP and see what he says.

So - not too bad then ! (she says, hopefully) As with any new drug the side effects will differ from patient to patient so I will just have to see what happens when I take it. We then spent some time discussing how I was in general - particularly in regard to the horrid effect steroids were having on me. I'm still retaining water, my feet and hands are very swollen, and I have the typical 'moonface'. I can start to reduce them slowly later this week when the last bit of Sutent should be finally leaving my body and my joints start to recover.

Apart from the lump under my right boob, which has grown and is now the size and shape of a large avocado, all the others appear to be the same - but its been a few months since my last CT scan so Dr P has booked me for one - its a good idea to have one as I start Afinitor anyway. And that was that. Big smiles all round as I left and pottered round to the radio therapy department clutching my bag of Afinitor. I felt ridiculously positive - and more than a little lucky. I'm not sure lucky is the right word, but everything seems to have happened at exactly the right time for me and I thank God for it.

Radio therapy was a new experience for me - I knew nothing about it really, except it uses radiation to kill off cancer cells. I didn't know, for instance, that a 'mould' is made of your legs and bottom to make sure your bones are in the right position every time you have treatment. A 'mould' of my bottom for goodness sake !! And its bright red !! I also have dozens of tiny black tattoos on my legs and chest wall which are lined up with the machine, again to make sure I'm in exactly the right position. Getting me in precisely the right position on the table, and it has to be accurate to within a few millimetres, takes about 20 minutes - the treatments, 3 of them, only take about 5 minutes altogether. Its just like having an xray - it doesn't hurt and you don't feel anything apart from being uncomfortable lying on a hard table for a while. For me the main benefit will be pain control - but it can make things worse before they get better and indeed that seems to be the case. Depending on which part of the body being treated you can also have other side effects but the main one is extreme fatigue yet again. Which will be great as far as I'm concerned as I'm still not sleeping very well !

Two down, one to go. Zometa is given as an infusion in the chemotherapy department so it was another short toddle round there. Ive never been in this part of the cancer centre before so was surprised to see how big it is. There were at least 20 other patients sitting in big reclining chairs having their chemo. I must have had my 'rabbit caught in the headlights' look on again because the nurse looking after me made me a cup of coffee and sat and chatted to me for a while before trying to get a needle in my hand. It only took her three attempts, I was very impressed. And then a teeny bag of Zometa was dripping away - I felt a bit of a fraud looking round the room, all the other patients had big litre bags of chemo and there was I with this tiny little thing that only took 15 minutes to run through ! A quick flush and it was all over - apart from discussing yet MORE side effects. 'Flu' type symptoms for the first few days, fatigue (!), nausea and vomiting, bone pain - in fact the 'usual' suspects ! Its also advisable to take vitamin D and calcium supplements. I was given my next appointment for 6 weeks time and that was it - all finished. It was only 11.30am - everything done and dusted in two and a half hours and I could go home.

I felt ok-ish. A bit shaky from all the poking and prodding and my legs were aching badly, but generally alright. I spent the rest of the day trying to take it easy and watching and waiting for something to happen but it didn't. Apart from the pain in my legs which I was taking oramorph for every 4 hours everything was fine and I even managed a nap in the afternoon.

And I have just taken my first dose of Afinitor - I remember taking my first Sutent, sitting there and waiting for something to happen - not knowing if it was going to work or not.

I'm a bit apprehensive to say the least about the next few weeks - I know its going to be tough - I know its going to be hard work staying focused and positive. But Dr P obviously thinks I'm capable of coping with it. And I have all the support I could possibly need so I'm just going to grit my teeth and plough on through it....and concentrate on the benefits I should feel in a few weeks time.

Talking of support I want to thank everyone for their comments on this blog. You have no idea how much they mean to me. If I'm having a bad day reading them gives me just the boost I need to keep going, keep fighting. Knowing I have so many 'friends' out there, whether personally affected by KC or not, gives me such strength - and not just me either, Martin loves reading them too

I'm utterly convinced that soon, very soon, we will find the right path to deal with this horrible disease long term.

The girl in the mirror....

2009-10-05T12:52:00.000-07:00

I guess most women when they hit their 50's don't spend as much time preening in the mirror as they used to when in their 20's. Remember when you couldn't pass one without a sneaky glance and flick of your hair? And a little self satisfied smirk? Yes, me too. Alas those days are long gone and nowadays I'm found actively avoiding them - and cameras too which for some reason have suddenly turned against me in a very cruel, spiteful way. Just when it seems a lot of people want to take pictures of me the camera has become my enemy. And I don't even remember us declaring war!

Yesterday as I carefully, gingerly, climbed out of the bath - holding onto the towel rail for dear life in case I fell - I caught sight of myself in our full length mirror. And froze.

That's not me that's not me that's not me.....

Who is that stranger staring back at me?

Whose is that bloated, shapeless, pale body?

Whose is that little fat hamster face? All red and flushed with little puffy, piggy eyes?

The eyes, yes, those eyes look familiar with the matching white eyebrows and eyelashes. And peering further down, yes, there are the scars. The one and a half boobs. The hole where my hickman line came out of. The tumour standing proud now and surrounded by tiny little black marker tattoos put there by the radio therapy department.

No. There is no doubt about it. Its me. Its Jane. But its Jane on steroids. High dose steroids. And it really isn't a pretty sight. In fact its blooming horrible !!

I'm taking steroids to deal with the inflammation and pain caused by Sutent in my joints and muscles and there is no doubt they do help. But at what cost to your looks. They make you put on weight, retain water, hands and feet swell alarmingly, face all flushed permanently - and yes my biceps are noticeably improved !

These side effects, I have been faithfully promised, are temporary however, and now I have stopped Sutent I can gradually reduce the steroids and my body should return to 'normal' fairly quickly.

Which will be a relief. As Dr P. would say I'm having a pretty 'challenging' time right now as it is.

In the past couple of days I have learnt one very important lesson. In order for pain killers to work you actually have to take the blooming things - not just stare at the bottle hoping it will go away. And take them regularly. Because if you don't the pain just gets worse and worse until all you can do is focus on it and nothing else. Being in constant, severe pain is so very wearing - and so very unnecessary most of the time.

I had a lecture (well deserved) from Mary this morning. So now I am taking my MST morning and night and using Oramorph 4 times a day as well. The pain is now a bearable background 'ache' and I'm not 'zonked' out from having to take large doses to get on top of it. For once I'm being sensible. This will carry on for the next few weeks whilst I'm having radio therapy and the last dregs of Sutent leave my body. Then I can start to reduce the amount of morphine I'm on. Not exactly hard it is? I don't have to be 'big and brave and tough it out' - that's just called being stupid. And its so unfair on those around me as well. Poor Martin was out of his mind with worry and was naturally really upset to see me in such agony.

So, apart from the fact I look like Mr Blobby, I'm feeling better. All these 'challenges' have come along together but it doesn't mean I cant deal with them one after the other - and beat them. Tomorrow its back to radio therapy and on Thursday I start Zometa infusions - and shall also see Dr P. to discuss when I start taking Afinitor. What a busy social whirl I have! haha!!

And in the meantime I PROMISE to take my pain killers when I'm supposed to and when I need to.....(and I'm NOT looking in that bathroom mirror again for a few months!!)

Notes from the fog...

2009-10-03T03:58:00.000-07:00

I'm still here. Somewhere here. In the middle of writing a couple of entries which I was waiting for some info to complete.

In the meantime Sutent has done its worst again and every joint in my body is on fire again. I cant walk. Hands and feet and legs are swollen. Started radio therapy which will carry on next week. The pain was unbearable last night.

Martin rang MacMillan this morning - stop Sutent and take as much Oromorph as I need. Which is a lot at the moment. Pain is easier but I feel totally spaced out now. Lips are numb.

Anything else I write will be garbled nonsense so I wont.

Im still here but I feel as if Im holding on by my fingertips right now.

Afinitor

2009-09-27T05:11:00.000-07:00

Dr P. and I at the launch of Afinitor.

The official UK launch of Afinitor was held by Novartis in London on September 16th and Dr Porfiri and I were invited to attend. Naturally I was very keen to go - Afinitor is the drug which has been developed specifically for when Sutent fails to work, or stops working. I didn't know at the time how close I was to needing to myself though.

Dr. P and I took part in a very informal 'sofa chat' with Dr. Scott from Novartis in front of what must have been 80 plus reps and other employees. 'Jane's Journey' was shown (I still get a bit tearful no matter how many times I see it) and I spoke about how important and precious the past 18 months had been to me and my family and friends, how having access to these new life extending drugs was giving us KC patients a real hope for the future, the fact we may have a future after all.

Dr P. spoke very movingly about his job as an oncologist, how he can now treat all his patients with some of the latest drugs now (although three are still denied funding by NICE) and how pharmaceutical companies such as Novartis are researching and developing new drugs right now, in fact there are 28 new mRcc drugs being trialed in the US right now.

Afinitor is now licensed as the approved second line treatment for mRcc when other targeted therapies have failed. It works in a slightly different way to Sutent in that it targets a protein in the cancer cells which affect cell division and blood vessel growth. To be honest its all a bit complicated for me, but the main thing is that Afinitor works - and it does. It more than doubled the time without tumour growth or death in its trials.

Afterwards, during lunch, I had the chance to meet and speak to most of the Novartis team. I have to say I was completely overwhelmed by the drive, determination and commitment to their work they showed - particularly in regard to Afinitor. As patients I don't think we always appreciate the work that is done on our behalf - after all, this is all for our benefit at the end of the day.

When Martin and I left later that afternoon it was with a real sense of inspiration - and a real hope for the future. There may well be that we have yet another fight on our hands with NICE to gain approval and funding but I'm ready for it - because this is a battle that we MUST win.

Goodbye Sutent - Hello Afinitor !!!

2009-09-26T21:18:00.000-07:00

I have turned into a zombie.

I'm not sure if I will be the flesh eating kind yet but it stands a good chance with the appetite the increase in steroids has given me.

I'm hardly sleeping at night - hardly sleeping at all actually, just a couple of snatched hours here and there during the day. The nights I spend either on here, reading and trying to distract myself, watching late night telly - which can be dreadful or surprisingly good depending on my mood - or lying, gently seething, at the snoring body in the bed next to me. Its not Martins fault I cant sleep of course, but there is nothing more irritating when you can't than to have someone next to you who is having his full 8 hours.

And the reason I'm not sleeping?

Pain.

Pain in my feet, my knees, my thighs, my side, my back......at times it seems its just everywhere it so hard to differentiate where its coming from. I saw Dr. Jill at the hospice a week ago when this was first beginning to be a real problem and she increased both my steroids and my MST. This seemed to help for a few days but now its back again with a vengeance.

Sleep deprevation is awful - it exacerbates absolutely everything. Thinking straight becomes a real problem. Making the simpliest little decision can take on the magnitude of a 'Who wants to be a Millionaire' question. Without the phone a friend option. Tempers get frayed (mine) and people wisely avoid you (Martin and the kids - and even the cats keep their distance now).

It sounds pretty hopeless doesn't it but there is a glimmer of hope on the horizon. Last Thursday I went to see Prof. James at the QE clinic to see about my having some radiotherapy. Everyone here was busy working except Edward who had a free afternoon from college so I took him for company this time. Surprisingly he agreed without much of a fight.

It was strange sitting in the clinic waiting but not for Dr P. this time. He was there busy with his testicles and prostates and when he saw me he came over with some brilliant, amazing news.

I have got Afinitor !!!

I could have jumped up and kissed him - except my legs were hurting !

It took a while for the news to sink in. I've just started on cycle 19 (or is it 20? I cant remember) of Sutent and this will be my last one. Next month I will start Afinitor. A new drug which works in a different way and has been developed especially for when Sutent doesn't work or stops working. New over here anyway, it's been used in the US very sucessfully for a while now of course.

I was still grinning like an idiot when I went in to see Prof. James and what he had planned for me made me even more positive and hopeful and SO encouraged. This week I'm starting radiotherapy on my legs and the lump under my boob - 10 days of intense treatment and it is specifically to help with the pain I'm getting and may even slow down the growth of these tumours.

So - radiotherapy for 2 weeks to help with pain and slow down tumour growth. First infusion of Zometa to strengthen bones on 8th October. And then starting Afinitor at the end of October.

This is what I hang on to in the dark, early hours when I cant sleep......

Behind the painted smile....

2009-09-17T14:04:00.000-07:00

Caroline and I clashing horribly at the launch of 'Jane's Journey' !!

Its been 4 weeks now since the launch of the film and kidney cancer awareness campaign - and a pretty amazing 4 weeks it has been. I'm almost getting used to seeing articles and pictures of myself in the press or even on the telly now - but it still comes as a shock when a total stranger comes up to me and says "I saw you on the telly/in the paper/read your blog/watched the film - how ARE you?"

This happens a lot now, especially when I'm out locally. Its nice. For one thing it shows just how effective the campaign has been so far, and continues to be. How many people it has reached. In fact it has been calculated that it reached 45 million people world wide !!!

45 MILLION !!!!

It seems such an incredible number but when you think about the film itself being on YouTube and linked to so many Internet sites - kidney cancer, cancer awareness, medical and health web sites, Facebook groups, blogs, news etc... all the radio interviews, national and local, rolling news on Sky and ERBU news, its not that surprising the message has reached so many people. And its an ongoing process - there are still a couple of major pieces to be published, one in a well known women's magazine.

But as I said, its locally I really notice it. If I'm out shopping or at the hospital or in the bank there always seems to be one or two people who come up and start chatting to me and of course they always ask how I am....and say how well I'm looking.

I am looking well, especially with a bit of blusher and lippy on. And generally I do feel well. But as I sit here in this no man's land of waiting for my radio therapy and Zometa infusions to start, and to find out if I have funding for Afinitor, there is a small bubble of panic rising up from below the surface. I'm in the last few days of my Sutent cycle and yet the tumour under my right breast has grown very noticeably in the past week or so. And is now once again very painful. So it looks as if Sutent has stopped working on this one at least and I have no idea whats happening inside me. Hence the panic. Dr P. has arranged for me to have some radio therapy on it as well which should help with the pain at least but its only a stop gap - I need a treatment to stop the bloody thing growing. Its almost as big as what's left of my right breast now !

All I can do right now is keep as well as I can, stay positive and have faith in Team Jane who are working so hard on my behalf. And thank everyone for all their good wishes, emails, messages of support and comments on here.

And yes, if you see me in the butchers please come up and say hello, right now especially it means an awful lot.

Some good news for a change !!

2009-09-10T00:25:00.000-07:00

I didn't really expect to feel much benefit from the blood transfusions I had. I was asymptomatic I thought. No shortness of breath, no tiredness (well no worse than usual!), I didn't look anaemic. So it was a lovely surprise to wake on Monday morning feeling wonderful !! Bursting full of energy and all bright and breezy. I guess it had been a slow process and I hadn't noticed the gradual effects of being anaemic. What a difference it has made though - I'm sure I was given 3 pints of Linford Christies blood !!

Tuesday morning and off I went for my MRI scan. This was a first for me, Ive had loads of CT scans but didn't really know what to expect with an MRI. The first thing is that you don't need any 'prep' for it. No nasty drink the night before. And no nasty, stingy injection during. But as far as scary, noisy procedures goes it wins hands down. An MRI scanner is a long tube which you are slid into - completely if you have your whole body done. I only needed my legs doing so was lucky enough to have my head poking out of the end. The end of the tube was only inches from my nose though so it must be very claustrophobic if you are right inside the machine. The worst bit is it its so NOISY. Its like having major road works being carried out right next to your head. I was given some head phones to listen to the radio with which did help but for the 20 minutes I was in there the back ground banging and thumping was still clearly audible.

I didn't have long to wait for the results - I had an appointment for that afternoon. That's pretty impressive isn't it? Martin and I arrived on time, and were immediately shown through to the consulting rooms to meet Mr Tillman - the surgeon on Mr Grimer's oncology team. He brought up the MRI scan on his computer - it was a view of both my femurs looking upwards as if from my toes - the bones showing as two dark circles like doughnuts. The right femur looked fine with the tumour visible in the middle bit, the cortex where the bone marrow is, but the surrounding bone unaffected. The left one showed the bone to be thinner with a small break in one area where the tumour had burst out. But basically the bone itself looked pretty good to me.

Mr T. agreed. Not as bad as we originally thought. Wow !! That has to be a first for me !

He then went on to say we have 2 choices. Either an operation which would entail having the affected piece of bone cut out and a metal rod inserted. Quite a major operation really. Or to treat it conservatively with radio therapy and the infusion of Zometa to strengthen the bone.

I asked him what were the chances of my leg breaking if I decided not to have the operation and he said he didn't think it would - unless I had a fall or something. And then even if I did he could still perform that operation.

So as far as I'm concerned the decision was an easy one. I'm feeling well right now and don't want to risk a long recovery process, the risk of infection etc... and more to the point, being off Sutent for an extended period of time, which I would need in order to have this operation. That is far riskier than having my leg break.

Although it was my decision it was nice to hear Mr T. agree with me. I shall have another MRI in 3 months time (it is SO good to hear a doctor confirming I could well still be here in 3 months time!) to see how the infusion is working and review the need for an operation then.

It looks like I'm having a bit of luck for a change - and it is about time isn't it?

Blood and more....

2009-09-08T15:41:00.000-07:00

James and Grace at the launch of 'Jane's Journey'

Saturday morning, nice and early, came the call from the QE hospital - a bed was available for me to go in and have the blood transfusion I needed. Brilliant - plenty of time to get 3 units in and be home by late afternoon. Martin dropped me off at 9.30am and then carried on to his golf competition which was due to finish at around 4pm, so perfect timing. Or so I thought.

The first sign that things may not go according to plan was when I arrived on the ward to be told that, yet again, I had been assigned to a bed on the 'Young Persons Unit'. Not that it really bothered me, a bed is a bed, but there is nothing guaranteed to make you feel old than to be surrounded by a load of teenagers....playing 'Guitar Hero'.

I had some blood taken for x match and a very competent young doctor got a cannula in a vein in my hand, first time too - so we were all set by 10.30am. Just had to wait for the blood to come from the blood bank. And wait. And wait.....

Lunch came - which was absolutely horrible. It was apparently fish pie but I'm sure nothing that ever came out of the sea was in it. Followed by semolina. No wonder the kids on the ward were sending out for MacDonalds.

Finally, at 2pm, my blood arrived and the first unit was put up. I did a quick calculation and realised that, at 2 hours per unit plus a bit to flush each through, I would be lucky to get out this evening. And that was if nothing went wrong. Which of course it did. This is me we are talking about after all !

I settled down for a nice doze and was just dropping off to sleep when I was shaken awake by the Mum of another patient - I was lying in a pool of blood on my bed. The connection between the line and the cannula hadn't been tightened properly and instead of the blood going into my vein it was pouring out on to the bed - and all over me !!

Fortunately this was quickly sorted out by a nurse, me and the bed were cleaned up, and the transfusion was started again. All went well after that until supper time when I was subjected to the awful food again. I was absolutely starving by now and would have eaten almost anything but even I couldn't face the unidentifiable gloop on my plate.

My third unit finally finished at 10pm and it was with a huge sigh of relief that I headed home - and straight to the fridge !!

St Mary's.....Live!!

2009-09-04T05:33:00.000-07:00

It took Mary, my Macmillan nurse, 18 months of gentle persuasion to ease me through the doors of my local Hospice, St Mary's. Not because I was scared of the place, or because I thought it was a place for the dying only - just because I wasn't ready for it then. But I am now.

I attend the Day Unit here every Friday - and what a revelation it's been. I have a ball here !! We get seriously spoilt and pampered with aromatherapy and massages, there is a hairdresser here if you want your hair cut or just washed and blow dried (Kim is really good too - she cut mine beautifully last week), there is a library with books and magazines and lovely comfy easy chairs to just sit in and relax. But best of all is meeting the other patients, who quickly become friends. I'm the youngest by years but that doesn't matter - we have a laugh and a gossip and rarely talk about our illness's. We know we are all in a similar position and that makes it easier to relax in each others company. The food is really good - its cooked here on the premises and the best 'hospital food' Ive ever had.

The Day Unit is run by a small group of nurses and some very special people - the volunteers. These ladies come most days and give their time to make us coffee and toast, serve the lunch and organize things like quizzes. And again they quickly become friends. My little group is just 10 strong, the eldest being a lady of 94. We are a bit short on the men side though with just 4 of them.

The nurses are there to help us of course and in case we have any problems with our medication or we need any help from the other services which operate from there, like the Occupational Health or Physiotherapy department. And there is always a doctor there too if we need to see one. So all in all it's a great place to be for the day and I really look forward to going.

Things are moving on the 'leg' front. My MRI scan is booked for Tuesday morning - and in the afternoon I have an appointment to get the results and hopefully find out when they can operate. And yesterday I saw Dr P. for my usual check up. Everything is ok except my Hb has dropped again, to 8.2 this time. So I'm going into hospital over the weekend to have a transfusion...or two...or three!! It needs doing because the surgeon wouldn't take me to theatre with such a low Hb. It's just a case of timing now - I need to be on a break from Sutent because it can affect the healing process. I'm on day 14 of cycle 17 right now - so the perfect time for an operation would be in about 2 and a half weeks. Fingers crossed it all works out. After the operation I'll be having radio therapy on my legs and a 6 weekly infusion of a drug called Zometa which helps to strengthen bones.

The best and most exciting piece of news Dr P. had for me is that this week he is applying for funding for Afinitor (Everolimus) for me. This new drug is the natural progression from Sutent for when that fails or doesn't work. Although Sutent still appears to be working, the tumours under my arm, on my scalp and on my ribs don't feel as if they have grown, I'm still getting a lot of pain in my knees and thighs - a side effect which seems to be here to stay and means I'm still taking MST, which I would love to be able to stop. After all I've been on Sutent for 18 months now so I think it's the right time. IF I can get funding of course.

All in all there is an awful lot going on 'Team Jane' wise right now - but all of it positive and so encouraging. I'm still being treated with the aim of fighting my disease. No one is giving up on me yet. This gives me such a tremendous boost and makes me more determined than ever because with the very best doctors and the very best treatment the NHS can provide who knows what is possible?

The 'thigh's' the limit !!

2009-08-31T02:04:00.000-07:00

The letter was waiting for me on the door mat when we returned home. From the Royal Orthopaedic Hospital. I had an appointment with Mr Grimer, a bone cancer consultant, on Thursday afternoon. That's soon. Very soon.

The weekend and early part of the following week I spent resting as much as possible - I had no choice. I felt so unwell. Terribly tired and with awful pains in my legs and feet. It probably had a lot to do with the fact that I had built myself up and kept going for the big launch last week - and then Ive come down with a big bump. Resting definitely helped. Plus sleeping as much as possible although not always at night. Ive given up trying to get back into a routine of sleeping through the night and just sleep whenever I can. And not worrying about it.

Thursday afternoon Martin and I arrived at the ROH, a new hospital for us, on time for our appointment at 2.30pm. To find the clinic was already running 2 hours late. Its not really a problem - you just have to accept it, relax and wait. In a way I find it comforting, it means the consultant is doing a thorough job with all his patients and not rushing through them with his eye on the time.

We finally were called in to see Mr Grimer and his specialist nurse at 4.45pm. He was really nice and friendly with a lovely smile which put me at ease straight away. We chatted a bit about my treatment over the past couple of years, my new found 'fame' (Martin had found another article about me in a local free paper in the waiting room) and then he put the recent x-rays of my legs up and things got serious.

In my right femur the tumour is in the bone marrow right in the middle, and it only extends a little bit into the bone so far. So that's ok for the moment.

But in my left femur the tumour extends right into the bone on all sides, in fact in one place there is only a thin piece of bone left. He looked me in the eye and said 'I'm really worried about this'. Now when a consultant says he is worried then you worry too. A lot.

The bone needs supporting - and now. Basically it could break at any moment and that could cause me real problems. A broken femur is pretty serious at the best of times but when its weakened by cancer there is a very real risk it wont heal again. I could end up in a wheelchair for the rest of my life. So it needs two rods inserting, one on each side, and then pinning at the top and bottom. He asked his nurse to find out if I could have an MRI scan now - this minute - and if not as urgently as possible. They need a scan to see the whole of the bone all the way round to find out where to pin it.

I'm waiting for a last minute cancellation MRI this week and then the operation will be carried out at Selly Oak Hospital, where I used to work, because they have the specialist kit and surgeons there. And that could be any day after the scan.

This may all sound very depressing but actually it isn't. Mr Grimer spoke of follow up treatment like radio therapy and then an infusion of Zometa, a bone strengthener, regularly afterwards. And keeping a close eye on my right femur.

Like Dr P. he is still treating me with the aim of fighting my cancer - he isn't giving up on me. So Mr G. joins Team Jane and a very welcome addition he is.

I left his clinic quite happy (well as happy as I can be!) and positive still - but with his words of warning ringing in my ears. NO weight bearing on my left leg. AT ALL. I have some elbow crutches to hobble around the house with but if I go out its in a wheelchair only. Basically to rest as much as possible. Which I am doing - it will only be for a week or two and then Ill be back on my feet again. With my bionic leg !

The next day, Friday, I went to my local Hospice for the day. Ive been putting this off for a while now but thought now was the right time to gently introduce myself to it. I had a really nice day - not at all what I was expecting. Each Friday I'll be going there, to the Day Unit. It will be a day when Martin wont need to worry about me at home on my own - and when the staff can make sure I'm resting.

They have computers with internet connections there so next Friday Ive decided I shall be blogging live, from St. Mary's Hospice in Selly Oak !!

Radio - Sky - Global News !

2009-08-26T23:18:00.000-07:00

Kate was there at 8.30am with a taxi to take us, Martin, Catherine and I, to the radio studio. The boys had decided they would rather have a lie in - lazy toads.

As usual Kate was really concerned about how I was feeling, making sure I was ok and felt up to the day ahead. I knew little about PR work before I met the girls Charlotte, Kate and Heather from RedHealth. The only impressions I had of the job was of the 'Absolutely Fabulous' kind - and that couldn't be further from the truth. They have all worked so hard on this campaign and have been so kind and considerate to me and my family. They are all a credit to the company they work for.

Ive never been to a radio station before so had no idea what to expect, but I did expect it to be busy and bustling with a lot of people there. It wasn't. In fact we were the only ones there apart from the producer and the man who twiddled the knobs and made everything happen. We sat in the main reception area which was very plush with big squashy sofa's and coffee and croissants and the papers and waited until my first 'slot' which was to be at just after 9am.

The list of interviews I was to do was a bit daunting - actually it was blooming scary - 11 altogether. And 4 of them 'live' (eekk!!) All were for local radio stations and covered the country from Jersey to the north east and Wales.

A few minutes before the first interview was due to start I was shown into a teeny room with a desk, a set of headphones and one of those big microphones that hang down in front of your mouth. One side of the room was a huge window into the room next door where all the technical stuff was, a long desk of knobs and buttons and screens and the producer sat and could talk to me. And at the back of this room sat Martin, Catherine and Kate - grinning at me like Cheshire cats!

I put the headphones on - and waited, my heart thumping away. I'm sure they must have been able to hear it next door. All of a sudden a voice in my ears said 'Hello Jane' - and we were off.

The morning passed in a blur of me chatting to various DJ's from up and down the country about the kidney cancer awareness campaign, Jane's Journey and the signs and symptoms and importance of early diagnosis. My early fears melted away and I found it much easier than I expected - really enjoyable - I think I must have a face for radio!

I had a couple of breaks during the morning and was allowed out of my 'cupboard' for a coffee and it was during one of these that Kate told me 'Jane's Journey' had been rolling news on Sky News all morning - and I had missed it !! We found it online and watched it. What a brilliant piece Eleanor had done. It was everything and more we could have hoped for - and on Sky rolling news!

Just after 1pm and we had finished. The pains in my legs and exhaustion I now felt, I think I had been running on adrenaline up to then, drove us back to the hotel where I took to bed for a rest. Martin and the boys went out to explore the West End, Catherine stayed to keep an eye on me.

We had an early dinner, caught the train, and were back home by 10pm. It had been a long couple of days - but so enjoyable for all of us. Most important of all I felt I had done my very best in representing kidney cancer patients in raising awareness of this horrible disease.

Early the next morning the press/media coverage started to come in - the following are just a few that were aired/published.

Sky News

Lack Of Awareness About Kidney Cancer In The UK: Sufferer Stars In Short Film About The Disease - Sky News Video Player

'Jane's Journey' makes it onto a US news station!!

Ebru News Kidney Cancer On The Rise

And my local news paper....

Birmingham Mail - News - Birmingham News - Selly Oak nurse's battle with kidney cancer to be watched by millions

"Jane's Journey"

2009-08-23T22:30:00.000-07:00

Wednesday 19th August was the launch of the kidney cancer awareness campaign and "Jane's Journey", a short film which highlights the importance of the extra time which can be bought for terminally ill patients by the use of the new kidney cancer drugs.

What a day !! I hardly know where to start - except it was early, 8.30am to be precise, when we were picked up from home and taken to the train station...complete with 3 cases for an overnight stay !! We were being delivered virtually door to door so I wouldn't need to walk very far. In fact the furthest I had to walk was out of Euston station into another taxi which took us to our hotel, The Shaftsbury, right in the heart of theatre land.

The event itself was due to start at 3.30pm but the press would be there from 2pm for interviews so we didn't have long to get ready. After Catherine had the usual battle with my hair, its far too long now and really needs a good cut, we set off on the short walk to the Curzon Cinema. It was a beautiful, sunny day and really warm and my legs wern't too bad so I managed to walk there with just one stick.

The Curzon Cinema is small and painted black on the outside - in fact it looks like one of those that show 'X' + rated films in foreign languages. But inside its lovely, spread out over 3 floors and there was a bar and refreshments set out for our launch on the 2nd floor - the cinema itself was on the 3rd.

We met up with the ladies from Red who were very busy organising things with Sky News and AP - the two film crews who were already there. Eleanor, the reporter from Sky, was lovely - really friendly. The lady reporter from AP was terrifying to say the least - very bossy and demanding I'm sure she is really good at her job but she scared the life out of me !

I did a quick piece with Eleanor in the cinema itself with the film playing in the background which went really well - then it was Cruella's turn (I call her that for a reason as you will see) She wanted footage of me and my family walking down some stairs and into the cinema. Hmm...ok. I really cant 'do' stairs because they make my legs hurt too much and I end up going down them on my bottom at home. Buy I thought Id grit my teeth and have a go - trooper that I am ! So we did it. And again. And again. Because she wasn't happy with the results. By this time I was waddling like a penguin such was the pain in my knees. Still, she got her footage but if you see it notice the fixed grimace on my face !

I then went into the cinema with her and her camera man where she barked questions at me for a few moments, then thankfully she said 'thats all' and swept out. Phew....

Time for the screening. I didn't realise there were so many people there, the cinema was almost full. I sat there clutching my speech (more of that later) my mouth so dry my tongue was stuck to the roof. Nick Turkentein, from the James Whale Fund, Nicholas Owen and Pat Hanlon from UKKC introduced some of the shorter clips with lovely, witty, off the cuff speeches and then it was my turn.

I'd been working on my speech for a week. I'd had to write it down to make sure I covered everything and to stop me gabbling which was a distinct possibility anyway.

I stood at the lectern and looked out at the sea of faces - my family, friends, Rose and Clive, Dr P, Daniel and his team, the ladies from Red - and a huge lump appeared in my throat. This was the culmination of such an emotional event for me. Oh Lord... don't let me cry now. Then I saw Grace waving at me "Hello Nanny Jane!"

So 'Nanny Jane' gave her speech and didn't falter - not until the very last few sentences where she explained that her disease had progressed and noticed several people sniffling on the front few rows.

'Jane's Journey' was shown but to be honest I watched it through a film of tears. This was such a gift - not just to every present and future kidney cancer patient, but to my family. Something so very special they will be left with when I'm gone.

The rest of the afternoon passed in a bit of a blur - hearing the very kind comments from everyone and discussing where to go in the future. With me trying to ignore the increasing pain in my legs. Id been on my feet all day and was really noticing it now. Id taken my MST that morning but like a dummy had forgotten to bring my Oramorph out with me.

At 7pm some of us, family, friends etc.. went for a meal to round off the day. It was nice and at last I was able to sit down and relax a little. But the damage had been done and it wasn't long before I had cramp in my hands and across my middle and all over my legs and feet - and I had to admit defeat and go back to the hotel. It had been a very long day.

At 4am I woke in agony. And stumbled to the bathroom where I sat on the loo sobbing the pain was so severe. I took 20mls of Oramorph and sat groaning and crying waiting for it to work. Which it did after what seemed to me was an hour but in reality was about 5 mins.

Like I said earlier - what a day. And I had to be up early the next day to go to a radio station and record some interviews. Fortunately I woke feeling much better and it was a bright and breezy Nanny Jane who set off that morning - this time with her Oramorph in her hand bag !

Press Release 19/8/2009

2009-08-20T23:32:00.000-07:00

New Survey highlights shockingly low public awareness of kidney cancer, despite more deaths each year than road accidents

20 August 2009
New Survey highlights shockingly low public awareness of kidney cancer, despite more deaths each year than road accidents
Kidney cancer is the least heard of cancer when compared to a range of other types of the disease1, even though it is the eighth most common form3
Worryingly, over one in ten (11%) people who have experienced blood in their urine, an early symptom of kidney cancer, have not had it checked out by a medical professional.

The James Whale Fund for Kidney Cancer and Kidney Cancer UK are launching a series of impactful films to help raise awareness of this cruel disease.

London, 20 August 2009. The James Whale Fund for Kidney Cancer, with support from Kidney Cancer UK, today announces new research that shows a shockingly low awareness and understanding of kidney cancer amongst the Great British (GB) general public. The YouGov survey of 2,145 GB adults shows that kidney cancer is the least heard about form of the disease, with only 2% of GB adults having heard much about it when compared to a range of other cancers. Interestingly, over half of GB adults (54%) claim to have heard most about cervical cancer and 42% for leukaemia, even though there are fewer cases of these diseases than kidney cancer each year. According to the survey, only half (56%) of GB adults have ever even heard of the term „kidney cancer‟.

“The results from this survey are concerning. Every day in Britain, around 30 people find out they have kidney cancer,” said Professor Tim Eisen, Professor of Medical Oncology at the University of Cambridge. “If caught early, surgeons can remove kidney cancer and cure the patient.

This survey shows that most British adults don‟t know what the symptoms of the disease are. Perhaps as a result, early symptoms such as blood in the urine are being missed. We have developed effective drugs to control advanced kidney cancer, but the only way to cure the disease is to destroy the cancer before it has spread.” According to the survey, only 5% of GB adults correctly identify smoking as the probable main cause of kidney cancer. This is particularly concerning given that cigarette smokers are thought to be twice as likely as non-smokers to develop kidney cancer.4 Over a quarter (27%) of GB adults mistakenly cite alcohol as the main probable cause.Kidney cancer accounts for around 3,700 deaths annually, which is more than die on the roads each year.

In the UK, the number of people diagnosed with kidney cancer has increased by 22% over the last ten years.The findings of this survey coincide with the launch of a series of new films that aim to help increase awareness of this devastating disease.

The main film entitled Kidney Cancer: Jane’s Journey, was commissioned by the James Whale Fund for Kidney Cancer, Kidney Cancer UK in co-sponsorship with Novartis Oncology, Red Health and Day For Night Films. The film highlights the personal journey of 50 year old Jane Thompson, a mother of three from Birmingham, who was diagnosed with advanced and incurable kidney cancer in 2007. James Whale, Founder of the James Whale Fund for Kidney Cancer, and himself a patient having been diagnosed with Kidney Cancer in the year 2000 describes Kidney Cancer: Jane’s Journey as “an impactful and incredibly moving account of the reality of living with advanced kidney cancer and the unquestionable importance of extended time for these people thanks to medical advances in this area. Through Jane‟s strength and determination, the film conveys a sense of hope as viewers watch her "squeeze the most out of every minute‟ that she has left with her family. In the film Jane successfully attempts to break down the "taboo‟ of death by showing the fantastic things that can be achieved in life, even when you‟re confronted with a terminal diagnosis.”

Jane Thompson herself says: “When I was diagnosed a couple of years ago I knew very little about kidney cancer, so I feel very passionately about anything that serves to increase awareness both with the public and the medical profession.”

Kidney Cancer: Jane’s Journey is available to view on You Tube. Jane also keeps a blog, which can be viewed HERE . The film is housed alongside other educational clips intended to showcase the plight of those living with kidney cancer and highlight the importance of hope for those who have been affected by the disease. BBC News presenter, Nicholas Owen, Founder of the James Whale Fund for Kidney Cancer, James Whale, Kidney Cancer Trustee, Pat Hanlon, Professor of Medical Oncology, Tim Eisen and carer and Kidney Cancer UK member, Jackie Lowe, all share their experiences in the educational clips that accompany the film.

The survey and launch of the films have been funded by an unrestricted grant from Novartis Oncology, a division of Novartis Pharmaceuticals UK Ltd, to the James Whale Fund for Kidney Cancer.

The way forward....

2009-08-15T09:33:00.000-07:00

It was difficult to imagine there would be a way forward at one time. It felt like everything had come to a full stop - with nowhere to go.

I'm not actually due to see Dr. P. until 27th of this month so it was quite a surprise when he called me on Wednesday - with The Plan.

How many doctors would do that? How many doctors would call and spend over half an hour discussing options and putting your mind at rest that there were still treatments out there which could help you....... plus the fact he had already put these plans into motion? Not many I can tell you.

Firstly, my bone scans and x-rays have been sent to a Mr.G. who is a consultant oncological orthopaedist (bone cancer specialist). The main areas of concern are my femurs. Mr G. will decide if they need any artificial strengthening in the form of a rod inserting, or plating, or some concrete stuff injecting into them (sounds lovely doesn't it?) Because where the tumours are the bones are weakened and at risk of fracturing. So we are waiting to hear his opinion now.

Secondly, I'll be having radio therapy on my legs which will help with the pain and could slow down the growth of the tumours at the same time. Apparently it is really good for pain relief which would be great as I'm still taking 100mg of MST a day to control it. Id really like to be able to lower that. It's not a real problem but I do feel permanently 'tiddly' - like I've had a couple of glasses of red wine !

Thirdly, every 4 weeks I'll be having an infusion of a bone strengthening drug. Dr P. has used it before with his prostate patients and there is every reason to believe it could work for me.

Fourthly - to stay on Sutent.

Finally - Dr P. pointed out that until we hear back from Mr G. I really need to rest my legs. And stay off them. Which is easier said than done because it's totally against my nature - as I'm sure he knows !

So thats the plan - and I like it !

Attack my cancer from all sides - don't give it a moments peace - blast it with radiation, drown it in drugs and give me bionic legs if necessary !!

BURSTING with pride !!!

2009-08-11T17:16:00.000-07:00

Well I made it !!

I was so determined to be there.

James' 'Passing Out Parade' with the RAF today.

It was a wonderful day, the sun was shining, and James - well, I couldn't have been prouder.

Reeling and regrooping

2009-08-08T12:58:00.000-07:00

I havn't slept for 2 nights. I don't think anyone else here has much either. The shock of my scan results hit us all like a tsunami and left us gasping for breath - not quite sure what to do next. Martin was in a dreadful state, unable to go to work yesterday, wanting to talk and yet breaking down when we tried to. It was like when I was first diagnosed all over again, the shock, the fear, all those feelings of being out of control washing over us.

Caroline and Sarah rush round on hearing the news and wrap themselves around us like a big fluffy blanket trying to comfort us - their words don't help but their presence does.

I feel this enormous sense of guilt as if it's all my fault - I know it's not, I know it's the cancer and it's not me, but I can't help feeling like this. It's my fault and I have to put things right somehow but I don't know how. I don't know where to start.

I know what happened - we became complacent. Martin especially. He had settled into the routine of Sutent working, maybe a little blip here and there, but generally everything going along fine from month to month, scan to scan. The longer this went on with me being well the more he became seduced by the idea that this could continue ad infinitum. He even comments on this in the documentary.

It's not a bad thing of course. In fact it's the only way to live rather than being constantly anxious, permanently fearful, but it does leave you wide open to the shock when things DO change.

Slowly we surfaced, calmed down and took stock.

Essentially nothing has changed. I'm still the same as I was a week ago. Ok so I have a few more tumours in my body but I'm still Jane, 100% Jane in the bit that really counts. The bit that will never give up fighting because it simply can't.

So I did what I always do and starting searching online for information about the treatment of bone metasteses. And yes, there is a drug that can help protect the bones from breakages, even strengthen them and slow down the growth of the tumour. I have no idea if it will be appropriate for me, or even available to me, but I'm sure Dr. P. will.

The sun is shining, the birds are singing, the bees are buzzing and the butterflies are fluttering and tonight I know I shall sleep.

Jane's Journey - The final leg.

2009-08-07T06:52:00.000-07:00

Since I started his blog two and a half years ago (was it really that long? It only seems like yesterday) I've always tried to write in a light hearted, hopefully humorous way. Shortly after I was diagnosed I made the choice to be positive and upbeat - no matter what was thrown at me -and be happy and just so very glad to still be here.

But there comes a time when humour doesn't work any more, when all the positive thoughts in the world wont make something disappear. And that time has come.

I wasn't expecting anything to show on my bone scan, I thought it was just a formality to confirm the pain I had been getting in my joints and muscles was due to Sutent. I didn't even ask Martin to come with me for the results. "I'll be fine" I said. "It's ok I'll take Catherine for company"

I should have known better. A small voice should have warned me that each time in the past I had received bad news Martin wasn't with me.

It was a busy, busy clinic again and Dr P was running over an hour late - that didn't really matter though especially as it took 2 nurses over half an hour to coax a few drops of blood out of me from the one teeny, weeny vein I have left in my hand now. That one has now finally given up the ghost and they were eyeing up my feet for the next time I need blood taken. Catherine and I then sat waiting with all the prostrates and their wives and a new young chap who I assumed to be a 'testicle' because he was so young - only in his 20's. Poor lad - he looked terrified. I remember how I felt the first time I came to the Cancer Centre. I remember feeling how out of place I felt because then I looked and felt so well. Now I hobble in using a stick and all the staff call me by my first name and ask after the children and we chat about holidays and who's had a baby and who's getting married. I feel like part of the fixtures in there now.

When Dr.P. called me he pulled up the bone scans on his computer and turned it round so I could see. A bone scan looks a bit like an x-ray with outlined in pale white - except on mine there were several large dark masses in the middle of them. I knew straight away. Dr. P didn't have to say a word. I felt like someone had sliced my stomach open and the contents were spilling onto the floor.

In the middle of my left femur, my right humerus, my sternum, on my right ribs and on the top of my skull were large dark blobs. And a lot of smaller, slightly lighter, less defined deposits.

Bone metastases.

Oh shit oh shit oh shit - it's everywhere.

Total shock.

Why hadn't I seen this coming?

Why was I completely and utterly unprepared for something that I know is a natural progression of my disease?

I had been so wrapped up in what Sutent was doing to my joints and muscles I had forgotten that although my cancer was being slowed down by Sutent, it was still working away inside me like some nasty insidious parasite. And spreading.

So it seems I am on the final 'leg' (yes it's a pun - you can smile!) of my journey. There is no disguising it now - it is what it is.

Assisted Suicide

2009-08-04T00:02:00.000-07:00

Last week Diane Purdy won her appeal to have the DPP set out clearly whether it would prosecute in regard to anyone helping a terminal patient travel abroad to commit suicide. Which has to be a good thing doesn't it? Ms Purdy is suffering from MS, a condition that means she may be physically unable, when and if the time comes, she wishes to end her own life. She will need to travel abroad to do this where assisted suicide is legal. And naturally she wants her partner to be able to accompany her without fear of him being prosecuted when he returns to the UK.

Being terminally ill myself, and having been in such excruciating pain last week, made me think long and hard about all the implications surrounding assisted suicide. It is illegal in this country of course - but what exactly is the definition of 'assisting'?

If I decided I wanted to end my life and Martin passed me the bottle of pills with which to do it would he be guilty of it? Even if I was the one who actually took them? Or would he be guilty of 'assisiting' by merely sitting there and watching and not doing anything to stop me? It's a bit of a mine field isn't it and the law certainly needs clarifying.

There are the fears that too much clarification and the situation may arsie where dear old Aunt Mabel, terminally ill but living in a lovely (but very expensive) nursing home may be taken on an unexpected 'holiday' to Switzerland and not return.

Or that the terminally ill patient may feel pressure, whether real or imagined, to end their life early and save their relatives all the stress and strain and grief of watching them die slowly.

I believe we, the terminally ill, have a fundamental right to end our lives when they have become unbearable - but it must always be OUR decision. And the circumstances surrounding that decision will be different for each person naturally. And can change from time to time. Last week I had started to wonder just how much pain I could tolerate before I began to plan such a course of action. And yet this week I'm almost back to my 'normal' self.

However, one thing that did cross my mind in regard to those of us with a terminal illness who are not ready to end our lives yet - indeed we wish to extend them with the help of the new cancer drugs that are becoming available. I wonder how NICE would appraise any proposal on assisted suicide? It surely would be more cost effective than any life extending drug. Will NICE be approving assisted suicide as a treatment 'option' in the future?

Scary thought.....

Bones and Frocks

2009-08-02T10:11:00.000-07:00

With all the CT scans, X-rays, Lymphocintothingys, bone scans and treatments I've had in the past two and a half years you would think I would be radio active enough by now - any self respecting Geiger counter would go haywire in my presence. In fact Martin often jokes you could probably successfully plug an item of electrical equipment into me and it would work. So when I turned up to have a bone scan on Monday morning the radio active injection I was given could have been surplus to requirements.

On Saturday morning I started a course of Dexamethasone, a steroid, and by the evening I was feeling amazingly better. Not only in my joints but in my general health as well. Much brighter and perkier and I was actually hungry for the first time in days. I must admit I was a bit wary of taking them - I really don't want to pile on the weight or grow a beard or look like Arnie - but they certainly have seemed to do the trick.

As I was feeling so much better, after i had been given my radio isotope injection (ouch!) I had a couple of hours to kill before the scan itself so I decided to drag Martin into the Bullring to look for 'the' dress for the launch of the documentary.

Now Martin may be great in many, many ways but Gok Wan he ain't and I wasn't holding out much hope he would be of much help. How wrong was I. We had only been in Debenhams a few minutes and he was pulling out nice, suitable, fashionable frocks - and accessorizing them with shrugs and bags !!

Dress and little cardi were tried on and paid for (by Martin so even better!) in half an hour which has to be a record for me. So that was a huge relief - I was starting to panic a bit.

Back to the hospital and the scan - which wasn't that bad really. Just uncomfortable as you have to lie flat on your back for 40 minutes.

I'll get the results on Thursday when I see Dr. P. but to be honest I'm really not that worried - I feel SO much better than I did last week. What a difference a few days, and a few pills can make. And best of all I've got 'the frock' !!

Team Jane

2009-07-29T08:25:00.000-07:00

There are some pretty amazing people on 'Team Jane'.

Dr. P is one of course, always at the end of the phone if I need him, always available at his clinic even if you havn't got an appointment.

Then I have Mary my MacMillan nurse. Again, always available on the phone and if I need help urgently she swings into action instantly.

And finally my GP Dr.A. One of the lovely old fashioned GP's who does his own visits and really cares about his patients.

MacMillan nurses are experts in palliative care and pain control and within half an hour of leaving Mary a message that I was in trouble she consulted with the hospice doctor, faxed my GP and put Dr P. in the picture. She called me back and told me to double the dose of my MST. 10 minutes later Dr A. phoned to tell me there was a prescription waiting for me at the surgery.

It did the trick. I spent yesterday dozing comfortably and for the first time in days my body felt relaxed and not all tense due to the pain. I took another dose last night and slept like a baby till 2am when I was sick - almost certainly due to the fact I havn't eaten for 3 days. Then slept again till 7am and I've just forced a piece of toast down before my next dose is due.

Now I feel a bit achey, a bit woozy and a bit sicky - but SO much better than I did.

How lucky am I to have Team Jane ? They are all so dedicated and hard working and when something needs sorting they do it - instantly. No messing about or waiting. It's not just a job to them, I know they really care.

Today is another day. I've hauled myself back from the depression I was slipping into and am positive and hopeful again.

There are also other members of Team Jane. Martin, who has been simply wonderful and not complained once when I was repeatedly waking him up at night. The kids who have been really helpful fetching and carrying stuff for me. And the support and encouragement I have received from comments on here have given me a boost when I really needed it.

So to all of Team Jane - a very big Thank You !!

Cancer XXXX Cancer

2009-07-29T00:03:00.000-07:00

Ok - now I'm starting to get angry. I need this anger right now as it's my only way of fighting back, of dealing with the pain.

Dr. P. called back yesterday with a 'plan'. I can't stop taking Sutent. I have to keep taking it because it will take at least 3-4 weeks to sort me out with an alternative treatment, probably Everolimus, and that long without any treatment would mean bye bye Jane.

So keep taking it and control the pain with MST. It takes a certain amount of courage and an awful lot of faith to take a tablet in the full knowledge it will cause you agony - and yet that's what I did last night. Then I took my MST and fell asleep. Until 3am when I woke in agony again. So I took some Oramorph, tossed and turned for the rest of the night, and got up at 7am still in agony.

I'm only on a very low dose of MST, 20mg twice a day, so I expect it will need increasing. I bloody hope so anyway !

Once I get my pain relief sorted I'll be happier - and feel more positive again. I may have to spend the next month drugged up but it will be worth it. It's pretty frightening to be in constant pain and not knowing when, or if, it's going to get better. I know Martin is worried sick, I can see it on his face, and I'm trying to hide it as much as possible from the kids.

3 weeks today on 19th August is the launch of the documentary so I HAVE to be better by then - or at least have the pain well controlled. That's my goal at the moment and it gives me something to aim for.

It's back

2009-07-27T23:53:00.000-07:00

I spent last night in a world of pain. Nothing worked. No amount of Oramorph. Every single joint in my body was aching right down to my ankles, fingers and even my jaw. My thighs are agony too.

I managed to struggle downstairs this morning, I've got the district nurse and physio's coming today, but all I really want to do is go back to bed and lie there feeling sorry for myself.

I shall have to call Dr P. later this morning and let him know whats happened - that I've had to stop taking Sutent again as that is obviously what is causing this problem, I had improved so much whilst I wasn't taking it.

I'm going to start taking the MST I was prescribed tonight - I didn't want to take it before in case it masked any new symptoms or pains. Also because it seems like a step down the path I really don't want to go down yet....just yet. But this constant pain is starting to get me down.

So what now? Is this the beginning of the end? Or is there something else that will help me?

For the first time ever I'm starting to feel despondent - which I hate. Its probably due to the pain I'm in, lack of sleep, and being so frustrated at being stuck in the house.

For better or for worse?

2009-07-25T23:57:00.000-07:00

Martin and I had a row at the weekend - a real humdinger of one. Not so unusual you may think but in our case it is. We have hardly had a cross word for the past two and a half years.

We used to. Like most couples I guess over the space of 27 years we had our fair share of blazing rows. On the whole though we have always been a happy couple. But caring for and supporting each other seemed natural in normal circumstances. Everything changes when one partner is diagnosed with a terminal illness.

When this happens society expects the sufferer to move into sainthood mode, whilst the partner becomes a ministering angel. But of course the reality isn't like that.

The reality for Martin has been that shortly after retiring from 30 years service in the Police Force all our plans for the future had to change dramatically. The children were almost grown up and we were going to move to the coast, something Martin has always wanted to do. Now our lives are caught in the stranglehold of cancer treatment, unable to move house, unable to plan anything very far in advance. Now he has so much more to deal with - he works full time in a job he enjoys but which can be very stressful, he has had to take over certain jobs around the house which I'm not capable of doing any more, with my critical eye on him. And of course he worries about me constantly.

You never think about something like this when you get married. You think that you will be together for 40 or 50 years and then one of you will simply fade away. You can't imagine your relationship being ended in such a dramatic fashion.

So far we have coped with our, slightly warped at times, sense of humour. Trying to treat each hurdle I come up against as lightheartedly as possible. But it isn't easy. I'm very conscious of not being selfish or self absorbed, of trying to keep life as normal as possible under the circumstances, of being upbeat and positive (which can be irritating at times I know) and of making however long I have left as happy as I can for everyone.

I've never been angry about my illness. I've been through the stages of the cancer journey, some of them several times, but I've never felt anger. I don't think Martin does either but he gets very frustrated at times. He has never been one to show his emotions but in the past couple of years I've seen him cry - and it breaks my heart. We have talked about what life will be like without me - he plans to buy a Harley Davidson and ride across America (slightly pissed off because I would love to do that !) but when the time comes I know it is going to be so hard for him.

I have the easy part in this - his is far more difficult because he will have to carry on afterwards and cope with the fallout of my death with the children.

So I guess the odd row or two is inevitable - and healthy. He still feels able to shout at me, he's not treating me as an invalid who mustn't be upset. The very last thing I want is for him to feel resentment towards me because of the illness I've brought into our life which has turned it upside down.

Once more unto the breach....

2009-07-23T23:21:00.000-07:00

Last night I started taking Sutent at my normal dose again. Pretty apprehensively I must admit.

I saw Dr Kaur again yesterday morning, Dr. P's registrar. Apparently Pfizer (who make Sutent) have never heard of such a severe reaction and question whether it is Sutent that has caused it. And of course there is only one way to be sure - to start taking it again and see what happens. I should know within the next 48 hours. Apart from my left knee, which is still very painful and a bit swollen, the rest of my joints just ache, the awful pain has gone. And I really don't want it to come back !

So far so good - I don't feel any worse this morning.

It feels like I've been off Sutent for ages but in fact it's only 10 days so it should still be fighting my cancer. I've been checking my tumours regularly for any sign of them growing and they don't appear to be. And I still feel well. So I'm keeping all my fingers, and toes, crossed that the pain doesn't return and I can stay on it.

If it doesn't return then the question will be what on earth caused the problem in my joints? But I'm not worrying about that now - I'm just hoping and praying that I can continue to take Sutent and that it continues to do the job it has been doing - keeping my cancer well and truly under control.

NICE appeal 13/7/2009

2009-07-17T23:18:00.000-07:00

I'm feeling a bit better. The pain killers, after a bit of tweaking, are working well and I'm managing to hobble around the house with the aid of my nice, shiny, new zimmer (complete with bell). I still have to crawl upstairs on my hands and knees, and come down on my bottom like a toddler, but just being able to move about has made a big difference. The combination of Co-codamol and Oramorph makes me feel nice and warm and fuzzy during the day and helps me sleep at night and fortunately the nausea has gone.

The diarrhoea I suffered whilst taking Sutent has now been replaced by constipation - due to the codeine I am taking. So instead of racing to the loo (which I couldn't do now anyway) I now spend ages just sitting and waiting...and waiting. I just can't win in the loo stakes can I? I'm getting some Lactulose today which should sort that particular problem out.

So I'm feeling much more positive and ready for whatever Dr P. has lined up for me on Thursday - if he is allowed to have anything lined up that is.

Which brings me back to the NICE appeal which was held on Monday. The appeal was against NICE's decision to refuse funding for 3 kc drugs - Nexavar, Torisel and Avastin and for the use of Sutent as a second line drug.

I have been advised that to write in detail about the appeal prior to the results being published could be detrimental to any future appeals we may wish to make. So I shall wait. But when the time is right I WILL write about it. Especially about the insensitive remarks made and the inappropriate behaviour (giggling together and smug smirks) of a couple of members of the Appraisal board.

So instead I will leave you with the words of the other kc patient to speak at the appeal, David.

'I used to think that being given a terminal diagnosis was the worst possible news I could receive. I was wrong. Being told I have a terminal illness, however there are licensed, effective drugs which could extend my life - but I cant have them.

THAT is the worst possible news'

I've had better days.

2009-07-14T22:58:00.000-07:00

I can't walk. I have excruciating pain in my shoulders, hips and knees. Absolute agony.

I had been having this pain for a few weeks and coping with it but on Monday afternoon, when I was at the NICE appeal, (I'll write about that when I feel better) it suddenly became worse. Martin managed to get hold of Dr. P. and tell him what was happening. He said to stop taking Sutent immediately, take tramadol for the pain, and see his registrar at the Cancer Centre at 9am Tuesday morning (he was in London himself).

'Stop taking Sutent' - the worse possible news.

I just about managed to get home that evening, took some tramadol and went to bed. Unfortunately the tramadol didn't work and I had a sleepless night - so did Martin with me groaning next to him.

The next morning, Tuesday, I couldn't walk at all. The pain was dreadful and I couldn't weight bear. I couldn't even bend down to put my knickers on. With Martins help (what would I do without him?) I managed to get in the car and at the hospital he found a wheelchair for me.

Dr. P's registrar saw me straight away. She examined me from head to toe and then ordered a battery of tests and x-rays which took the rest of the morning. They came back clear with no sign of metastatic disease, apart from a small tumour in my left hip we knew about, no sign of arthritis or any inflammatory condition.

So it appears that it's Sutent, at its highest dose, with short breaks, that has caused this.

I came home with a carrier bag of very strong pain killers, co-codamol every 4 hours and Oramorph (liquid morphine) for break through pain. Its working but I feel permanently high, woozy and a bit nauseous. Anything is better than that awful pain though.

I called Mary, my Macmillan nurse, and she has organised some walking sticks, a loo seat and a zimmer frame for me (which the kids think is hilarious and Martin says he will attach a bell to) so I can start to mobilise.

But my biggest worry is that I'm not having any treatment for my mRcc now. I'm seeing Dr. P. again next Thursday to decide on a plan. There is a slight possibility I will be able to start Sutent again at a much lower dose but that really isn't likely- this is such a severe reaction.

Thanks to NICE there are no approved alternatives for me. There are licensed, effective drugs out there but the NHS wont fund them. My cancer is so aggressive I have only a few weeks to play with.

But I have Dr. P. and I have complete confidence in him. He will do everything possible for me I know.

Sutent side effects - the full monty !

2009-07-10T08:18:00.000-07:00

Since Sutent was approved for funding as a 1st line treatment earlier this year I have had many emails asking me about the side effects. So I thought it's about time I did a comprehensive list of the ones I have encountered - and how I have coped with them. This is just my personal experience of course over the past 18 months, the side effects differ from patient to patient, but I hope I can pass on a few useful tips.

I've been lucky (!) enough to suffer almost all of them but without exception I have found them all to be manageable in one way or another. The severity can differ from cycle to cycle and some disappear altogether after a while - for instance in the first few cycles I had a very sore mouth but now it's fine.

Right - here we go.....

First of all take your Sutent at night just before you go to bed - that way you sleep through the worst of the side effects.

Sore mouth/tongue - use children's toothpaste and an alcohol free mouth wash. Bland foods such as yoghurt, mashed potato, pasta etc.. are best when its really sore and nothing too hot or too cold. Luke warm is best. Use a straw to drink with if your lips are affected. As I said I suffered with a very sore mouth for the first couple of cycles but it hasn't bothered me since and I can eat or drink anything now.

Indigestion/bloated tummy - I take Pantoprazole (on prescription) for indigestion and to prevent gastric reflux. However I still suffered with awful indigestion at times and it was only when a friend suggested cutting caffeine from my diet that I really got it under control. It was a revelation and made such a difference. So now I drink de-caff coffee (it's not that bad really) and caffeine free coke (you get used to it) and don't eat much chocolate (that's the hard one!)
The best way I have found to cope with that horrid bloated feeling is to eat little and often, even if you don't feel hungry.

Elevated blood pressure - there's not much you can do about this. Make sure you have your BP checked regularly, at least once a week. Mine became raised within a couple of cycles so I take 10mg Amlodipine daily and it is now stable.

Decreased thyroid function - Make sure you have your TSH (thyroid function) checked whenever you have a blood test. Mine has been slightly elevated but no need for treatment as yet.

Changes to hair/skin colour - My hair is now white (or platinum blonde as I prefer to call it) ALL over my body. White eyebrows and eyelashes can be dealt with by using mascara and eyebrow pencil for us ladies - not sure whether the men would want to go this far though. I still have my hair coloured as you can get the odd darker hair, or even stripey hairs, sprouting through which looks most peculiar.
At the end of the cycle my skin develops a yellowish/grey tinge to it but that soon goes during the break. It's also become very sensitive and burns very easily in the sun so I now use a very high factor sunscreen - and fake tan !
My nails have also got a distinct yellow tinge to them - they look like they belong to a 60 a day smoker !
My eyes get quite puffy at the end of the cycle now - it looks like I've been out on the lash - but this soon clears up during the break.

Hand and foot syndrome - My hands have been quite bad a times, again this has varied from cycle to cycle, with cracked sore skin and pockets of pus down the sides of the nails. It can be really painful. Udder cream is definitely the best thing - buy it online in big tubs and smother your hands with it at least twice a day, they just soak it up. Its good for your feet too even if they aren't sore as it keeps the skin lovely and soft and supple. I always use gloves for washing up (if you can't get husband or kids to do it) and being a keen cook I wear disposable latex gloves for chopping/peeling etc..
When your feet are very tender it can be difficult finding suitable footwear - the only things I find really comfortable are flip flops in the summer and lovely soft fluffy Ugg boots in the winter.

Diarrhoea - This can be a right pain in the arse (if you'll excuse the expression!) - literally. The first sign and I take Loperamide - and keep taking it until it clears up. It can depend on what you eat of course - if you eat a curry you are asking for it. When it's been severe I've had a very sore bottom. I find that applying Sudacrem, it stings a bit at first, really helps it heal.
Don't be alarmed if your wee and poo change colour. My wee goes a bright lime green and my poo a nice pale orange. I'm pretty sure this is due to the colour of the capsules - I had one break in my hand once and despite a thorough washing it stained my hand orange.
I also suffer from excess 'wind' at times which causes much amusement in our house with the kids chasing after me with air freshener.

Tiredness/sheer bloody exhaustion - There is only one cure for this. Rest. Something I rarely do myself. But if I'm really exhausted a nap in the afternoon or simply just putting my feet up for an hour can really help.

Aches and pains in muscles and joints - I get cramp in the weirdest of places - in my fingers and along my shins. It can be really painful but doesn't last long fortunately.
Recently, in the past few weeks, Ive started getting pain in my joints and muscles. In my hips, my knees, shoulders and thighs. It can be pretty severe and debilitating and I find myself hobbling around like an old lady. Its early days but so far a cocktail of paracetamols and ibruprofen, 'piggy backing' them, take the edge off the pain (check with your GP before doing this of course).

Reading the above sounds awful but really it isn't. Life has carried on pretty much as normal for me. In the past 12 months I've travelled extensively and done things I never thought would be possible before I had cancer - let alone after.

The important thing is to remember it's Sutent that is keeping you alive and you can cope with the side effects as and when they occur. Remember to report them to your oncologist and discuss ways of dealing with them.

I'm off to London to speak at the NICE appeal on Monday - I can just imagine what some of the board members will be thinking when they see my face - "Oh no, its that bloody woman again!"

Listen to your body......

2009-07-07T17:28:00.000-07:00

.....that's what you are always told. 'Listen to your body'. And I do, really I do. The trouble is I completely ignore what it is telling me. The upshot of this is that now I'm home and completely and utterly exhausted having walked MILES whilst on our cruise. And with severe pain in my legs, hips and left shoulder. I cant even bend down to stroke the cats ! It's all my own fault I know it is.

My head tells me I should rest - but my heart says make the most of every single moment because you may never be here again. How could I stay on the ship and rest when there is Rome, or Genoa, or St Raphael to explore?

We caught the train into Rome again and the first stop was St. Peters. We queued in the boiling hot midday sun to get through security to get into the lovely calm, cool Basilica. I pointed out the small side chapel in there to Matt and Edward and said "A nun is constantly praying in there, 24 hours a day, 365 days a year" Ed replied "Doesn't she eat or sleep??" We all cracked up laughing - kids huh?

After spending an hour in there we caught an open top bus for a tour of the rest of Rome. Which was a great idea until we got stuck in Rome's dreadful traffic. And the skies darkened and thunder started to rumble around us. At the first big heavy drops of rain we jumped off the bus and decided to make our way to Rome's main station - which turned out to be a really good decision time wise.

The train back, which normally takes an hour, stopped at every single station on it's way back to the port, Cittivechia, almost doubling that time so we had a bit of a sprint to get back on board before 6pm (and I really don't do sprinting - its more of a fast waddle) We wern't the only ones - several passengers were seen running along the quayside just after 6.

Genoa is a typical old Italian town comprising of narrow cobbled streets and very steep steps leading to beautiful piazza's. It was a real struggle for me, especially up those steps, but the shops were calling and I had promised to buy Catherine a real Italian hand bag. Which I did, a beautiful cream leather one (which I shall be borrowing at the earliest opportunity!) We then sat in one of the piazza's at a cafe drinking espresso (me) and eating pizza (the boys) and watching the world go by.

The next day when we docked at St. Raphael there was no way, despite all my aches and pains, I was staying on board either. Because right in front of the ship was a long sandy beach ! So we spent the morning sunbathing (me under a big umbrella) and swimming. Lunch was a traditional, but expensive affair - Bouillabaisse - in a little restaurant on the front.

So all in all we had an absolutely fabulous time - but I'm paying for it now. And for once I AM listening to my body and resting. The washing and ironing can wait. The most important thing is to get me feeling well again and pain free. And I know I will be - a few days and I'll be as good as new (well as good as I can be!)

I recently heard a song from my childhood - a song that makes me smile and sums up my attitude to life. In fact I've decided it will be my theme song.....

YouTube - Morecambe and Wise - Positive Thinking

This is what it's all about

2009-07-04T23:12:00.000-07:00

On Monday 13th July the appeal against NICE's decision to refuse funding for Sutent (2nd line) Nexavar, Torisel and Avastin will be held in London. The James Whale Fund have asked if I, as a 2nd line Sutent patient, will speak there.

Of course I will be there - wild horses wouldn't stop me.

The success of having Sutent approved earlier this year as a 1st line treatment is only, and can only, be the beginning. The idea of having a 'one size fits all' treatment is ridiculous - especially with all the new drugs becoming available now. We need alternatives and sequential treatments.

So, nice as its been to be travelling around Europe, I'm looking forward to coming home tomorrow and going to London.

Because this is whats really important. This is what it's all about.

Tunis and Tumours

2009-07-02T21:42:00.000-07:00

Ok, yes I know, I seem to have spent more time abroad than Judith Chalmers on a busy year - in fact I think I'd qualify as a tax exile now - but I feel as if I really needed this cruise for a rest. Its been an incredibly hectic year so far with so much going on and Ive had a few dodgy days health wise, a couple of them just before we left. I was in quite a lot of pain in my left hip and the painkillers wern't having much effect at all. In fact the evening before we were due to leave I was seriously considering staying at home. When you are in pain and frightened all you want is your own bed - and your doctor and nurse on the end of the phone.

Fortunately regular use of paracetamol and ibruprofen and a weeks Sutent seem to have eased the pain somewhat. Its still there but it is bearable and I'm able to get out and about.

Our first port of call was Tunis, somewhere I had visited many years ago, and I must say it has changed out of all recognition. They have a new progressive President in charge and he is really trying to modernise the country, whilst it still remaining Muslim. Not an easy task.

One again we did our own thing rather than going on an organised excursion. Wandering out of the port we came across a taxi driver, Mustapha, and after a bit of haggling, struck a deal with him to take us to the Medina. Matt reckons Mustapha must be in the Tunisian Mafia because of all the connections he had - everyone seemed to know him. The Tunisian President was in residence and security was very tight but Mustapha was waved through road blocks like royalty ! Im sure he could have got us an invite for tea if he had wanted !

As it was he took us to 'the best beach in Tunis'. I really wish he hadn't bothered. It comprised mainly of builders sand, dog poo and ants. We didn't stay long.

Then we went to the Medina, or Souk, which is a huge market situated in very narrow streets. Its a bit like a rabbit warren and smells like one too! It was only 10am but the heat was already oppressive in there, the little passages are roughly cobbled and all the shops sell virtually the same thing - tat. It was horrendously claustrophobic and it would have been so easy to get lost in there. Fortunately Martin was 'scout' and his sense of direction got us out unscathed or we would have been doomed to wander forever having stuffed camels and brass ashtrays waved in our faces.

Being very aware of the time, the ship sailed at 12.30, and we didn't want to do a 'Mr & Mrs Green' (who missed the boat on our last cruise) we then returned to the ship and our lovely air conditioned cabin. It is so very hot here and the sun is so powerful. I couldn't sit in direct sunlight for more than about half an hour - you can actually feel the sun blistering your skin. Some passengers are made of sterner stuff however and spend virtually all day frying themselves - the results of which could be seen in the bar last night - it looked like a lobsters convention! I wish I had the concession for selling aftersun on here, Id make a fortune.

During the afternoon the Captain announced there were a few dolphins passing by on the port side of the ship. By the time everyone had worked out the port side was the left side (I knew - honestly) and stampeded over there all that was visible was a couple of flicks of their tails (the dolphins not the passengers) before they disappeared from view. Several people complained "Well that wasn't very exciting"
What did they expect?
The dolphins to be jumping through hoops and balancing balls on their noses?

Family Matters

2009-06-21T13:10:00.000-07:00

Since this photo was taken, a few weeks ago, 3 members of my family have moved away. A long way away.

James has finally, at the age of 24, left home and started on his new career. Its a big step for him, a life changing one, but absolutely the right one. I know he is worried about me but he cant spend the next *however long* waiting for something to happen to me. He has to get on with his own life. I'm so proud of him.

Grace and her Mum Sarah have moved with Tom and baby Noah up north, near Preston. Tom's parents live there in a lovely little village and they have moved into a pretty little house in the grounds. Again its absolutely the right thing for them to do. They are a proper little family now
with their own home and its a wonderful area for Grace and Noah to grow up in.

It was hard to wave goodbye to the 3 of them, even though I know we will still see them often. Sarah has been more like a daughter to me, especially since Ive been ill, and its been a privilege to see so much of Grace as she grew from a baby into a little person.

But life goes on.

Yesterday I had my 6 weekly MOT with Dr P. I was really glad to see him as Ive been getting an increasing amount of pain over the past few weeks, in my thighs (of all places) and my left hip. The pain in my thighs, in the muscles, is apparently yet another Sutent side effect (I think Ive had the full monty now!) and is pretty well controlled by taking paracetamols. As with the other side effects it should come and go. But the pain in my left hip is almost certainly due to the tumour in there. It wasn't very big on my last CT scan so it could be growing. Dr P suggested a bone scan but having had one before (its not nice and makes you radio active) I opted to wait and see how things develop. Paracetamols don't really touch this pain but I don't want to take anything stronger if I can avoid it. I'm hoping this will be like all the other pain Ive had in tumours in the past - that eventually Sutent kicks in and calms them down.

For some reason my Hb has dropped dramatically too. Its always been around 11 which is just about normal but yesterday it was 9. Under 9 and you need a transfusion. So I have until my next check up, in 5 weeks, to get it up by eating the right things. Which basically means steak and spinach (sounds good to me!)

Dr P isn't that worried (and neither am I really) I still look very well and feel well, apart from a bit of a limp !

At the weekend I start cycle 14 of Sutent - which seems pretty remarkable to me. Yes I've had a few blips along the way, mainly due to the side effects until I learn to manage them, but on the whole life has carried on pretty much as normal. A bit more than normal actually when you think of all the things I've managed to do.

Sutent has not only extended my life dramatically but improved the quality of it to the extent Ive been able to do some quite extraordinary things. Extraordinary for any 50 year old woman let alone for one with terminal cancer. And I'm so grateful for this - if it all ended tomorrow I would have no regrets, I have so much to be thankful for.

I would rather it didn't end tomorrow however as on Tuesday we are off on another cruise ! We are off to the Med. again but this time taking Edward and a friend of his, Matthew. This is a treat for Edward as he has just finished his GCSE's and although we don't know his results yet he did work very hard. The men have plenty of activities planned, such as mountain biking and visiting the NuCamp in Barcelona, but for me it will be a week of rest - and eating steaks and spinach !

(I'm sure there must be some iron in chocolate too?!)

The Price of Life

2009-06-17T02:59:00.000-07:00

The title says it all really - once you have a terminal diagnosis and require treatment to extend your life it then has a price tag on it. And usually a pretty big one.

Tonight I watched Adam Wisharts documentary 'The Price of Life'. It focused on the appraisal process used by NICE to determine whether any new treatment should be funded by the NHS - particularly those for terminal cancer patients.

Being a patient with terminal kidney cancer and also someone taking an expensive life extending drug I have to say I thought the programme pretty well balanced and informative. But it did raise some questions, questions that a lot of terminal cancer patients have been asking for some time now.

In my previous entry I have commented on how offended I felt to have Prof Barnett describe me as 'blinkered' and compare the drug I need to stay alive to buying a car. Why do NICE seem to think it is acceptable to have a go at patients? When you are diagnosed with a terminal illness but know there is a very effective treatment available which can extend your life what is wrong for asking for it? And the very last thing you want to do is to have to fight for it at a time when you should be making every moment count.

And as for Ms Christie, CEO of Birmingham East and North PCT, I hardly know where to start. In the two and half years I have spent campaigning to get life extending drugs funded for mRcc patients I have never come across someone as callous and unfeeling. Her attempts at emotional blackmail, by intimating that a cancer patient on life extending drugs would be depriving the PCT of a palliative care nurse, were truly disgraceful. She then went on to ask if it was 'in a patients best interests to fill their bodies with very toxic drugs for the last 2 months of their life' - which clearly shows she has absolutely NO knowledge of what she was talking about. Which is outrageous.

Ms Christie - having worked in the NHS for many years and knowing the terrible waste of money that occurs on a daily basis I suggest you get your own house in order first. Then, and only then, do you have the right to criticise cancer patients. In fact no, forget that, YOU will never have the right to criticise anyone.

One very important question that was raised yet again is why can't NICE negotiate with the drug companies? Or why can't the government? No one seems to be able, or willing, to answer this.

The final question asked by Prof. Barnett was 'How much more valuable is a month of life - at the end of life?

I will tell you Prof. Barnett.

It is priceless.

NICE strike again

2009-06-14T14:57:00.000-07:00

I'm not quite sure what qualifications are required to be the chairman of NICE - but it appears the ability to shoot yourself in the foot is one of them.

NICE have a new chairman - Prof David Barnett - and next week during a programme called 'The Price of Life' he accuses terminally ill patients of being 'blinkered'. As if thats not bad enough he then goes on to compare the use of life extending medicines to buying a car.

Dying patients who demand drugs on NHS labelled 'blinkered' - Telegraph

I shall be watching this programme with interest - I havn't met Prof Barnett yet but I'm sure our paths will cross very soon.

Oh, and by the way Prof Barnett - PLEASE don't tell me the NHS can't afford to fund these new drugs when last year it had a 75 million pounds surplus in it's budget.

What exactly were you saving that for?

To buy Ronaldo?

Dead Man Walking

2009-06-11T01:59:00.000-07:00

I see it in peoples eyes. Especially if they havn't seen me for a while. It's obvious what they are thinking.....

"Isn't she dead yet? She was supposed to die ages ago"

It's almost as if they are disappointed in some way - it's only momentary and then I get "You are looking SO well"

And I am. And I feel well. And long may it continue thanks to Sutent.

None of us know when the bell will finally toll for us, not even me. So it's important that whilst we are alive we LIVE. Be positive and live your life to the fullest. Do things that make your blood zing and your heart race and take your breath away.

A very wise man in Rio said the best epitaph for my grave would be....

'When she died she was ALIVE'

Flight AF447 - 2/6/2009

2009-06-04T15:41:00.000-07:00

Horrible, horrible horrible.....

I walked into Terminal 1 Rio airport and looked for the Air France check-in desk for flight AF447. You couldn't miss it. It was sectioned off at the far end and surrounded by camera men, photographers and journalists. As I slowly made my way towards it they all turned towards me filming and shouting questions - in Portuguese or French. This was the first AF447 since the tragedy. It all seemed so ghoulish and made me feel very uncomfortable - and more than a little afraid.

The Air France staff were quiet and subdued - in fact everyone was. At the departure gate we all sat in near silence. It was pretty obvious what we were all thinking. A mere 48 hours ago another set of passengers had sat here waiting for the same flight - and never reached their destination.

I'm pretty sure I was the only English person there - I craved for someone to talk to - anyone. I craved to hear the comforting sound of my mother tongue spoken. But when I got on the plane I found I was sitting alone. The plane was less than half full. Apparently there had been a lot of cancellations on what is normally a very busy flight.

The crew were wonderful - how could they be so cheerful and smiling when they had just lost 12 colleagues? But they were. I couldn't eat the food, it tasted of plastic. I knocked back a couple of brandy's hoping this would help - but it didn't. I couldn't concentrate on any of the films on offer - my eyes kept creeping back to glimpse at my watch - waiting for the time that, 4 hours into the flight, when the other plane disappeared off the radar.

The slightest bit of turbulence made me jump and grip tight onto my seat - I was afraid to go to the loo so just sat there with my legs crossed.

In the end I thought this is silly, get a grip Jane. I'm sure being on my own made it doubly worse. So I took 2 sleeping tablets and fortunately passed out for a few hours. We landed in Paris bang on time, I caught my connection and was soon back in Birmingham. Martin was waiting for me and I just flew into his arms.

Since I have been home I've found myself brooding about it. Thinking about what a lucky escape I had - how I had, oh so nearly, taken that flight. I only changed my mind at the last moment when booking it and decided to come home a day later. I've also been sleeping a lot - even for me. I think I've been a bit traumatised by it all to be honest. Hopefully writing it down will exorcise it for me.

I saw Dr. P. today and had the results of my CT scan - my disease still stable. Sutent is still working. Which is wonderful news. Something I need to concentrate on and try to dispel thoughts of the tragic events of Monday.

Tupyara

2009-06-02T03:50:00.000-07:00

Yesterday was a disturbing day. The tragic news about flight AF447 going missing seemed to touch everyone here in Rio, either directly or indirectly.

Ana knew a journalist on that plane. A director of the company Matt works for was also on it. And I had a strong sense of 'There but for the Grace of God go I'

So it was in a very sombre mood I went to Tupyara Temple yesterday morning with Ana - but as it turned out it was the very best thing I could have done.

Tupyara is right in the middle of Rio, up a tiny back street. In fact if you didn't know it was there you would have trouble finding it. From the outside it looks a bit like a hospital (as it does on the inside as I was to find out), its a very tall building with lots of steps leading up to the entrance which leads into the main hall which is huge. Its like a small aircraft hangar with a curved corrugated iron roof. The walls are painted pale blue and have pictures of the saints and Jesus and Mary hanging on them. There are rows and rows of wooden benches and then at the front a large altar with a statue of Christ on it. It does feel very much like a church. In fact the atmosphere there is what strikes you immediately, its so serene and calming with lovely music playing gently in the background. Any fears or worries I had were instantly washed away.

Ana and I booked in and received our numbers in the queue to receive healing, 126 and 127, so we knew we had quite a wait ahead of us. But, apart from the hard wooden benches which were pretty unforgiving on your bottom, I was perfectly happy to sit there in that lovely peaceful place.

We were dressed all in white again as were the people who 'work' at Tupyara - the ladies looking very much like nurses with long white dresses on and a small white cap and the men in white trousers and shirts.

The service started with all the people who worked there forming a large circle - there must have been about 50 of them - and saying prayers, singing hymns and preparing themselves for the healing session. All in Portuguese of course but it was wonderful and entrancing to watch. This took about half an hour and then suddenly they all disappeared through a door leading behind the altar and the names of the 'patients' to be healed started to be called out. One by one the patients also disappeared behind the altar and I was quite surprised how quickly the time passed until my name was called. In Portuguese I am 'Jeanie Katereenie' - which is lovely isn't it?

I walked down and took my place sitting just outside the door which leads behind the altar. Ana quickly followed and interpreted what a 'nurse' was telling us in preparation for our healing.

"Have faith, pray for what you wish whilst being healed"....she repeated over and over.

Ana and I were called in by another 'nurse' - the room behind the altar was dark and much bigger than I expected with beds lining both sides, some with patients on with nurses standing by them, some empty. We were sat next to a set of double doors which opened every few minutes or so as another patient was wheeled out on a trolley to be taken to their bed. Everything was very calm and peaceful and I felt completely at ease. A nurse took my shoes, bag and glasses off me and a man in white then said some prayers over me - Im not quite sure what he said but his manner was so caring and compassionate. Then the double doors opened again, another patient was wheeled out and Ana and I were called into the 'operating room'.

Operating room is exactly the right word for it - it was just like a large operating theatre with a table in the middle for the patient to lay on. All the 'nurses/doctors' wore face masks and formed a circle around this table, holding hands as they prayed. But it was very dark in there, the room was lit only by a small greenish light, just enough to see what was happening. Ana went first, climbing onto the table, being covered by a white sheet and then prayed over for about 20 seconds. Then she was lifted off onto a trolley and wheeled out - and it was my turn.

Until the moment I climbed onto the bed and lay down I thought I would be praying for a cure for myself. After all, thats why I came here to Brasil wasn't it? But the moment the circle formed around me from somewhere, I don't know where as it wasn't a conscious decision, I prayed that 'the time I have left to do good for all' The words just jumped into my mind from somewhere.

The prayers around me seemed to go on much longer than for Ana's - I felt a tingling in my toes and fingers for a split second - then I was lifted off the bed, onto a trolley and wheeled out.

The next thing I knew I was waking up on one of the beds with a nice nurse wiping my tears away - I had been crying but goodness knows why, I wasn't sad or frightened.

3 nurses were fussing around me talking to me in Portuguese (despite having been told I didn't understand) and Ana was nowhere to be seen - but I felt they were reassuring me. They kept rubbing my arms and holding my hand. Eventually 2 of them helped me to my feet and led me to another smaller room where Ana was sitting waiting. After a short time in there we left through the door next to the altar - and that was that. I have a bottle of blessed water to drink over the next few days and instructions to pray again next Wednesday night.

Altogether it was an amazing and uplifting experience. I don't know what happened in there but something certainly did. It's hard to describe in words but it was an experience I will never forget.

Why didn't I ask to be cured?

I have no idea - but I do know I asked for the right thing.

Air France flight missing.......

2009-06-01T04:42:00.000-07:00

An Air France jet carrying 228 people from Rio de Janeiro to Paris lost contact with air traffic controllers over the Atlantic Ocean, an Air France official said Monday. Brazil immediately began a search mission off its northeastern coast.

Air France Flight 447, an Airbus A330, was carrying 216 passengers and 12 crew members, company spokeswoman Brigitte Barrand said. The flight left Rio on Sunday at 7 p.m. local time.

The plane disappeared about 190 miles (300 kilometers) northeast of the coastal Brazilian city of Natal, near the archipelago of Fernando de Noronha, a Brazilian air force spokesman said. The air force began a search began Monday morning near Fernando de Noronha, he added, speaking on condition of anonymity in keeping with air force policy.

The region is about 1,500 miles northeast of Rio.

An official with France's transport agency said contact with the plane was lost at 0220 GMT Monday (10:20 p.m. EDT Sunday). The official was not authorized to be named according to agency policy....

Just to let you all know I'm still in Rio and wasn't on this flight.

It is however the flight I will be catching tomorrow evening - the 7pm AF447 to Paris.

My thoughts and prayers are with the passengers and crew on this flight.

Wot - no prints?

2009-05-29T03:49:00.000-07:00

I've been trying to keep up with the news whilst away. Most of it online seems to come from the US. There was a report the other day of a cancer patient from Singapore who had been held at immigration on entering the US because he didn't have any fingerprints. Apparently it is routine in the US. to take prints from everyone entering the country....I didn't know that!

This poor man was suffering from severe 'hand and foot syndrome' due to chemotherapy and the skin was peeling off his fingers. So he had no fingerprints. As Ive reported in the past my hands have at times been quite severely affected by Sutent and right now, although they arn't too bad, looking at them closely I have hard cracked skin on my right thumb, forefinger and middle finger, left thumb and forefinger. And no fingerprints on them !!

Ive never noticed that before - good job I havn't travelled to the US isn't it?

Its a point to remember for all patients on Sutent. If you are travelling abroad, even if not to the US, it may be a good idea to get written confirmation of your diagnosis, treatment and possible side effects from your Oncologist. Just to be on the safe side. I was given a card detailing all this by the Pharmacy dept. of the Cancer Centre which I carry at all times.

If I wern't a scrupulously honest person (shoves bag of swag down back of sofa!) I'm sure I could think of several advantages to not having any fingerprints !..

Pirinopolis and Brasilia

2009-05-28T03:51:00.000-07:00

We left the ranch before it was dark and drove the short way to Pirinopolis and our next hotel. Pirinopolis is a small historical town full of old colonial buildings and very bumpy cobbled streets. Again, by Brasilian standards, very affluent. We were staying in a beautiful old Pousada (small hotel).

The next morning, after negotiations which took the form of we girls telling Matt we wanted to go shopping that afternoon, we set off for Santa Maria waterfalls. It was over an hours drive up a long uneven dirt track and then a long, hot walk down a path through scrub/grass land - but SO worth it when we got there. South American waterfalls are world famous and rightly so.. The water was freezing !!! But very welcome as it was such a hot day. Even in winter here the sun is very powerful and I had to cover my newly sensitive skin (or 'sensible skin' as Luke calls it) with factor 30 just for a paddle - then it was back in the shade for me whilst Matt, Ana, Julia and Luke swam. Thanks to Sutent I don't tan any more. My skin is pale and very sensitive and burns very easily now. So different from a couple of years ago when I could fry myself all day long and went the darkest brown !

It was heaven lying on a fine sandy beach watching the hundreds of butterflies that gather there - but as I said, very hot. Goodness knows what its like in summer.

Sunday morning we drove back to Brasilia to fly back to Rio. A long drive but in the daylight this time. Its been fascinating to see this other 'face' of Brasil, away from the rainforests and the beaches, the bits we see and hear about back home. There is so much more to this fantastic country and the more I see the more I fall in love with it and want to return time and time again. I want to see the wetlands in the south west on the border with Argentina, the north east around Natal, and also go deep into Amazonia where it borders Bolivia. You could spend a lifetime exploring this multi faceted country.

Im beginning to understand Brasil a bit more now and subsequently its not quite as frightening as on my first visit - although driving around Rio still has to be the scariest thing on the planet !!

Brasilia is a purpose built capitol city - like Canberra in Australia - and is very modern and very ordered. And for a modern city very beautiful. The architecture is outstanding. It was built in the late 50's/early 60's but still has a very contemporary feel. And as such just doesn't seem to 'fit in' with the rest of the country. Its as if someone had picked up Milton Keynes and dropped it into the middle of Brasil (a tempting thought but I wouldn't wish that on the poor Brasilians!)

I've started to get some pain the the large tumour below my right breast and it does feels bigger and harder, so I've started taking Sutent again, Cycle 13 !!

I've had a 12 day break and its been fantastic, I feel SO much better for it but its time to let Sutent start doing it's job again. I just hope it kicks in quickly so I don't have the severe pain I had a few weeks ago. I'm taking paracetamol at the moment which is doing the job and I really don't want to take anything stronger. Not whilst I'm here in Brasil.

I'll know how well Sutent is still working, or not, when I get the results of the CT scan I had just before I came away. I see Dr P. two days after I return home but I'm trying not to think or worry about that right now...(But ofcouse I am - its right there at the back of my mind niggling away)

Joao de Deus.

2009-05-26T04:24:00.000-07:00

There are no signs directing you to Joao de Deus - you don't need them. You just follow the line of people dressed all in white down a small side street. This street looks pretty affluent by Brasilian country standards with lots of little shops selling white clothes, crystals, organic food etc...it did have a bit of a 'hippy' feel to it.

At the end of this street are large blue metal gates which are the entrance to the compound which consists of a cluster of bright blue and white buildings. It looks a bit like a school with an open courtyard in the centre. There is a crystal shop, a 'Farmacia' a cafe and a few other small buildings which had no sign on them. Matt and I collected our red tickets, which indicated this was our first time, and went and sat in the large open hall with everyone else. The white washed walls were covered in photos of Joao, prayers, and, right next to where we were sitting, a video was playing showing Joao doing 'operations'. It was more than a little disconcerting watching how he (apparently) pushes long forceps (a bit like Spencer Wells) up patients noses or stuck a knife in their eye.

By now it was 8am and the hall was packed with up to 80 people and more standing just outside. A series of 'volunteers' took to the stage and talked about the need for silence, meditation, to close your eyes but not to cross your arms or legs as the spirit doctors were now amongst us. We all stood and said a few prayers - the Our Father and Hail Mary were recognisable to me even in Portuguese - and then Joao himself walked in surrounded by his assistants carrying various covered metal bowls. He is a large man with longish dark hair and a very pale complexion.

He started telling of his childhood and how he discovered he could heal (poor Matt was having to translate all this for me). His voice was quite dull and monotone, not what I was expecting at all. He certainly doesn't possess the energy and charisma of a 'Billy Graham' type preacher. But Joao certainly had everyone's undivided attention - especially when he suddenly turned, and taking taking some forceps and a small piece of cotton wool from one of the metal bowls, inserted them right up a young woman's nose. It was difficult to see exactly what was going on as his hands covered her nose most of the time but when he removed the forceps, after wiggling them around a bit, the cotton wool was red. The young woman showed no signs of pain or distress at all during this procedure but afterwards was carried away in a chair. And Joao left too.

Those others scheduled for surgery that morning were told to line up and they disappeared into one of the many rooms at the back of the hall. After another half an hour or so of inspirational talk by more volunteers at last '1st timers' were called and Matt and I joined the queue leading out of the back of the hall. The first room we passed through was the 'crystal meditation room' with 30 or do people sitting in front of a huge crystal in silence. Off to the right of this was a small room containing what looked like operating trolleys - some of them with patients on apparently asleep. We followed our queue into another large room, again full of people meditating, where Joao was sitting at the end in a large chair. The queue wound slowly down the centre of the room as each person had a short 'consultation' with Joao. For some of them he scribbled something on a piece of paper and gave it to them. Then a volunteer was on hand to direct them to the next room Joao had 'prescribed' for them.

I was getting more and more nervous as we approached the front and when it was my turn my hand was shaking as he took it and held it briefly. He said a few words which Matt interpreted "Come back this afternoon" and that was it. We were ushered outside into the sunshine and given a bread roll and some grape juice. Matt and I were a bit baffled as to what had happened and why were we told to return in the afternoon (Matt had been told to come back too) when a nice friendly volunteer called Diego found us and explained that the right 'spirit doctor' wasn't there for us now - but apparently he would be at 2pm.

We drove back to the ranch a bit deflated, sat around in the sunshine watching Luke chase the chickens and goat, had some lunch and just before 2pm we set off again.

I had been getting increasingly worried about how I would react if Joao decided he wanted to stick some forceps up my nose or a knife in my eye - I was really NOT comfortable with the thought of either. Everyone else there seemed so at ease and relaxed, even the other '1st timers', was I the only one with a sense of disquiet and concern?

At 2pm we were back in the main hall which was again packed to the rafters. No Joao this time - but more preaching from the volunteers about silence and meditation. Another queue of people were called for their 'surgery' and finally, at 3.30pm, the '2 o'clock queue' was called. It was very long yet again and Matt and I were right at the back of it. Through the crystal therapy room again, some people were still there from the morning meditating, past the small operation recovery room which now appeared to be full, and into the main hall. Again familiar faces were still there from the morning. Joao was sitting in his big chair again. The queue was very slow as this time he would spend much longer with certain people - some only a few seconds, some up to 5 minutes. As they reached him a couple of people made loud long speeches on how Joao had cured them. Finally, after what seemed like hours, it was my turn again.

Joao held my right hand for a couple of seconds and said "Crystal therapy one time" as translated by Diego and he then led me into a small room with a few others where we meditated for about 5 minutes. Matt joined me shortly after (he had a MUCH longer session with Joao) and then we were shown outside again.

What an anti climax !

Here I am with terminal cancer and all I am prescribed is a few minutes meditating in front of a big crystal. Joao didn't ask, or seem to be aware of what is wrong with me. I felt, rightly or wrongly, that I had been shrugged off, especially when Matt told me what happened to him. Joao spoke to him for some time, asked his occupation and where he lived and then gave him a prescription (piece of paper with squiggle on it) and said he needed 12-15 special crystal bath sessions - and there is absolutely nothing wrong with Matt ! He was only there to accompany and translate for me ! (Actually Matt does have a sore toe right now but all that treatment seemed a bit excessive for that) We went and collected, and paid for, Matts pills from the Farmacia, which turned out to be Passiflora - a harmless herb - and drove back to the ranch where Ana, Julia and Luke were waiting patiently bless them.

So - my impressions of this experience?

I felt a huge sense of disappointment. I didn't expect some miraculous cure but I did expect a little more than a cursory glance.

Maybe it's unfair of me to judge after just one visit?

Maybe its because, despite Matt's translations, its difficult to fully engage in a process conducted in another language?

Maybe something did indeed happen and only time will tell?

Or maybe the point of it all just passed me by, after all I am a 'gringo'?

All I know is I expected to feel that something 'special' was happening in this place - and I felt absolutely nothing. I left with more questions than I arrived with and absolutely no answers.

Inland to Brasilia

2009-05-25T04:28:00.000-07:00

Thursday afternoon we flew out of Rio to Brasilia, which looks very close on the map but takes an hour and a half to get there.

The mountains which surround Rio are young, raw and jagged and covered in rainforest - a narrow strip along the coast which are the remains of the great Atlantic rainforest - most of which has been cleared now. Flying inland this soon gives way to more gentler rolling hills. Brasilia itself is on a high plateau and the land is dry grassland/scrubland called the 'cerrhado'. Its cooler here inland during the winter but the summers are terribly hot with very little rain and outside of the city of Brasilia sparsely populated.

It was a long dark drive to our ranch style hotel in Abadiania where Joao de Deus lives. The ranch is in the most incredibly beautiful setting in a valley surrounded by hills and next to a small lake. I had my own little timbered chalet which was simple, but spotlessly clean - it was also a bit scary in the dark to be honest. There were all sorts of strange scuffling noises coming from outside during the night and I was imagining them to be a panther or something similar - in the morning I discovered the scary beast was in fact a goat ! (Actually it WAS pretty scary - it wasn't a friendly goat at all and butted Luke a couple of times)

We had dinner sitting outside under the stars - millions of them. The southern hemisphere has so many more stars than we have and with no light pollution in the country you can see them all so clearly. The country also has lots of creepy, crawly, flying, stingy, bitey things too so I sat there covered in insect repellent strong enough to melt plastic. It worked though. Nothing living dared come too close to me tempting though my lovely pale gringo skin must have been.

Dinner was typical Brasillian rustic food - bbq chicken, presumably one of the ones running around the ranch as it tasted wonderful - not at all like the chicken you buy from Tesco. Beans - a bit like baked beans but a million times nicer, rice and salad. Simple but very very tasty and also very healthy. All washed down with very strong, very sweet, very black coffee.

We were all really tired by then and as Matt and I had to be up very early to go and see Jaoa we went to bed.

Im still not sure how i feel about this - I am completely open minded but Im not sure Im totally prepared for what may, or may not, happen. Im still slightly concerned I may end up tied to a post with chicken entrails draped over me !

All joking aside I am pretty nervous, spiritual surgery is still a concept that is fairly alien to us in the west. And yet it is accepted and even used alongside conventional medicine here. Lets just see what tomorrow brings....

Brasil bound......

2009-05-21T03:10:00.000-07:00

"Gosh you're brave" has been the reaction of a lot of people when I told them I was going to Rio on my own. Its certainly something I would have never considered a couple of years ago. But now my attitude to most things has changed, or maybe it's the fact that I have changed so much. Some people, when diagnosed with cancer 'come alive' and that is definitely what has happened to me. Im not sure brave is the right word - after all air travel is so easy nowadays (except when you get cancelled/delayed flights then it can be REALLY annoying - more of that later) I think they are referring to the fact that Im doing it whilst ill. Truth be told I feel fine at the moment - absolutely fine. A week off Sutent has done me the world of good and apart from the tiredness, which never seems to go away totally, it just varies in degrees, I have no side effects at all. So I'm going to try for a few more days off and start taking it again at the weekend.

One of the most surreal sights yesterday morning must have been me and a group of Chinese men together pouring over a Brasilian embarkation form - in Portuguese. They didn't speak English, I don't speak Cantonese and my Portuguese is VERY limited. But guess what? Between us, and a lot of the most peculiar sign language, we worked it out. This was at the end of a VERY VERY long day for me - thanks to Air France.

On my original ticket I was to fly on the 6.30am to Paris and connect on the 10.30am to Rio. Simple. Except both the 6.30 and the 8.30 planes went 'tech'. This means they had a technical fault and I missed my connection. And the next flight to Rio wasn't until 11.30pm that night. So rather than hanging around Charles de Gaulle airport all day and all evening I went back home and returned to catch the 5.25pm (except it wasn't - it was the 6.10 because it was delayed - are you starting to see a pattern here yet?)

When we eventually took off - 12 hours after I was supposed to start my journey - the flight was fine, very quick and comfortable. France finally redeemed itself in my eyes in the form of the lovely CGD airport, it was actually a pleasure to spend a couple of hours waiting there for my connecting flight to Rio, which, amazingly, left on time. We took off at 11.30pm on the dot. Faced with almost 12 hours flying and absolutely shattered by now, I passed on the food, had a glass of wine, a sleeping tablet, and zonked out for 7 hours.

We landed at Rio bang on time again. In fact it had been one of the smoothest flights I've ever been on. Perfect take off and landing with hardly a jolt. I guess thats because almost everything is automated now. There is no need for more than 1 pilot - and a dog. The pilot is there to feed the dog and the dog is there to bite the pilot if he tries to touch anything....haha !!

It took about an hour to clear immigration and collect my bag and then creep through customs, averting my eyes as I had a suitcase full of contraband (marmite and mustard and Cadbury's chocolate and McFly cd's) and Im not sure how long a prison sentence the 'mule' gets in this part of the world!!

Matt, Ana and Luke were there to meet me and it was just wonderful to see them all again. The sun was shining, it was 28 degrees, and yet the Brasilians were all wearing jeans and jumpers because to them its cold !

Still being pretty tired, and we are flying to Brasilia today, I had an early night....and was woken at 5.30am by the sound of helicopter gunships circling and firing on a nearby favella.....

I don't think we are in Kansas any more Toto.......

Rio bound....

2009-05-18T03:55:00.000-07:00

My PC has died and at present is being repaired. This is what happens when you allow your teenage son to use it - supposedly for his homework !

Tomorrow morning, at the ridiculously early time of 5am, I leave home to travel to Brasil. Im flying from Birmingham via Paris so it's a pretty straightforward journey - or it should be anyway !

Hopefully I'll be able to blog from Matts computer when I arrive....

Tchau !!