The long road ahead.....

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

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

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

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

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......

(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

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"

.... 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

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

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

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

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.......

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......

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

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......

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......

.......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.

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.....

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

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 !!

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

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

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 !!

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 !!

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.....

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

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......

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....

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...

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

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 !!!

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....

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 !!

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....

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!!

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 !!

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 !

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"

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 !