Thursday, 26 November 2009


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...

Monday, 23 November 2009

...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.


Wednesday, 18 November 2009

...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.


Monday, 16 November 2009

...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.


Saturday, 14 November 2009

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


Monday, 9 November 2009

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 !

Friday, 6 November 2009

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!!

Thursday, 5 November 2009

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.

Wednesday, 4 November 2009

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...... 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 !!...........

Tuesday, 3 November 2009

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.

Monday, 2 November 2009

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 !!