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And Finally

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

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

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..

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

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 ?

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........

....... 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

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

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

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

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......

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

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...

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

* 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....

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

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.....

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............

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 !!

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....

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...

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

' 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 !!

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...

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 !!

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..

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'........

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

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