Thursday, 29 March 2007

Good day bad day.....

Thats how it seems to go at the moment.  This morning I woke in agony, not sure why.  I spent most of the night tossing and turning and I think Ive pulled what few stomach muscles I have left.  Weighed myself again, lost more weight which is encouraging.

Ive been reading the KCUK Forum a lot lately, and scaring myself to death at times, but it appears I need to get myself referred, either now or in the future, to a RCC Oncology Specialist.  The nearest is at Christies in Manchester.  Could be worse I suppose at least its not London.  But there they do all the research and fight for funding for the new drugs like Sutent, and it looks as if Ill need that sometime in the future.  Im not sure if Martins health scheme will pay for that, its 30K a year, so I have to keep an eye on getting it on the NHS.  It seems each PCT has different guidelines and some will pay some wont.  What a dreadful state of affairs.

Wednesday, 28 March 2007

On the up....

......or should it be down?

Ive lost weight !!  What a relief, its a good sign and hopefully that leak is drying up at last.  I dont think I can stand much longer eating just baked potatoes, beans and bananas.  Besides, Martin has threatened to sleep in the spare room cos of the 'wind' problem this diet causes !

I had a really good day yesterday, so good in fact I went shopping to Redditch with James  and Grace (grand daughter) for the day.  Ofcourse I did too much and ended up exhausted at the end of the day, but it was a nice tired for a change.  Not a drained tired.

So today Im taking it easy.  Or at least easier.  The weather is beautiful right now, spring has indeed sprung and Im itching to get things done.  Still its a nice excuse to just sit in the garden and enjoy the warmth.


Friday, 23 March 2007

What a rollercoaster.....

No entry for the last week cos Ive been in hospital....again.  More of that later.

My recovery continued apace for the next few weeks, although I was very uncomfortable, especially in bed at night.  We had many a disturbed night with me groaning as I tried to turn on my side.  Its still impossible even now to lie on my left side where the rib was removed.  Apparently Cher had one removed from each side to make her waist smaller....the womans barking !

I managed to potter round Tescos with Martin although it completely wore me out and even went out for a meal for Martins birthday. 

2 weeks after surgery we went to see Mr D for my histology results.  He said I was looking remarkably well, which I was, and feeling it too considering the operation Id had.  My tumour was staged as 3a....not the best but by no means the worst. It had spread but only locally to one lymph node and my para aortic nodes were clear.  So a CT scan for April was arranged and Id see him again in May.

However, just 2 weeks later I noticed my tummy getting bigger and harder.  I tried to ignore it but the next week had to ring Mr Ds nurse, Nula, for some advice.  I went to see her and Mr D a couple of days later to be told I had Ascites....which is fluid in the abdominal cavity.  Crap.  Just when I thought I was really on the mend.  So it was back into hospital the following Monday, looking 12 months pregnant, to have over 5 litres of fluid drained off !

This fluid is Chyle.  Its produced by a leak in the lymphatic system and is basically fat, it looks just like breast milk.  Its a pretty rare complication of the operation I had and can be difficult to manage.  Great huh?  Im now on a totally fat free diet (cardboard and grass basically) with some nutritional drinks (oh yum yum) to supplement my diet.  Im totally comitted though cos the alternative is to be fed by tube, which I will really HATE !  I have to weigh myself every 2 days and return to see my new consultant, Dr Boulton the gastro man, in 2 weeks.

I have to admit this has come as a bit of a blow and for a while I became very despondant.  Carol visited, bless her, and chatting to her got things into perspective again... I dont know what Id do without her.

On the up side I should loose loads of weight !!  Size zero here I come !  On the down side it seems I have a fairly long haul ahead as this condition can take a while to settle.  So fingers crossed and pass the dry toast!



Monday, 19 March 2007

A very special friend.....

This entry is dedicated to a very special friend of mine.  Ive known Caroline since we were 17, weve grown up together really, had our children together and got through lifes lumps and bumps together.  Shes always been there for me, and I for her, but the past few weeks she has been more than a friend.  She is my rock.  She knows me SO well and she is the only person I can really open up to with my hopes and my fears.  I really dont know what Id do without her.  I could write all day about the lovely thoughtful things she has done and the support she has given me.  But I just want to say thank you to her.

Thanks Carol.

You really are the best.

Sunday, 18 March 2007

Great White shark bite.....

I knew I was alive because of the pain I was in. Not so much from the wound I had, which was very impressive (see pic above) but from the fact Id had a rib removed and a chest drain put in. Every part of my body seemed to have a tube going in, or coming out. There were bags of fluids and blood dangling above me and pumps bleeping away. I was as weak as a kitten, could hardly lift an arm, but none of this mattered really because I was alive. And my recovery was now very much down to me.

Martin appeared sometime during the afternoon, sat and held my hand for a bit but I was nodding off all the time so I wasnt much company. Mr D also popped in then and I do remember him saying the operation had gone very well, thats good enough for me I thought and nodded off again. The nurses were fantastic. Really. I felt so safe in their hands. The next morning I struggled out of bed to the surprise of everyone and even managed a cup of tea. I still felt very weak and shakey but as the tubes and drains started to come out one by one I started to feel a bit more human again. 3 days later I was wheeled back into my room and saw daylight for the first time in days, and it was snowing !!

If you have to be ill and in hospital there is no better place to be than the Priory. Its like a 5 star hotel. My room was lovely, own bathroom and so CLEAN. The food was absolutely yummy and visitors could more or less come any time. The kids came in ofcourse, I wouldnt allow them to see me in ITU, it would have been too scary for them. Just 3 days later I had recovered enough, and was keen, to go home. So 6 days altogether, thats pretty good going for an operation of this kind.

Oh it was nice to be home. And it was absolutely immaculate. Martin had done a stirling job bless him. This was the first time I had seen my wound properly and it did come as a huge shock. I was a bit upset at first but the kids made a joke of it which made me feel better...."It looks like youve been bitten by a Great White Mum!"

The next couple of weeks consisted of shed loads of pain killers, sleeping, and being generally spoilt by all and sundry.

I was starting to feel much more positive and optimistic.

A bolt from the blue....

The picture is of my family and I on holiday in Australia in December 2006. I look a picture of health dont I? Who would think that 2 short weeks later I would receive the most devastating news of my life.

This blog is mainly for my benefit, not to be self pitying or self indulgant but because I find it really helps, its a kind of therapy for me.

So, we returned from a fabulous family holiday in early Janurary 2007 and very quickly life got back to normal. Not for long though, on 27th Janurary our lives changed for ever. I wont go into all the gory details but I collapsed at home in terrific pain. I mean REAL pain, the kind that means you cant even swear ! I was rushed to our local NHS hospital and told initially I had kidney stones. This was quite comforting, kidney stones can be dealt with easily. However the next day I had a routine ultra sound and was told I had a large mass on my left kidney. Hmmm...not so good news but maybe its benign and harmless? No such luck, a CT scan the same day showed a very large malignant tumour which appeard to be invading my spleen and possibly pancreas. F**k. A very disinterested Registrar gave me the news straight from the hip and pronounced the prognosis was poor. An operation was possible but not for 6 weeks. 6 weeks?? 6 bloody weeks?? As you can imagine this completely knocked me and Martin (husband) for 6 and we returned home completely distraught, convinced Id been given a death sentance.

After a sleepless night we decided to pop in and see our GP, hes a great chap, more like a friend of the family really as we have had him for over 25 years. He was as shocked as we were, but quickly took control, told us there was a LOT could be done and was on the phone to a friend of his whos speciality was kidney cancer. We had an appt. with him later that evening. The family is in a private health scheme (thank God) so we decided to use this.

And so that evening we met Mr D. And how different was his attitude. It was like he gave me back a future. He could perform the operation necessary a few days later and was full of encouraging words about further treatment. We both walked out of his room feeling much more positive and hopeful.

So it was on 6th Feburary, at the ungodly hour of 6.30am, we went to the Priory Hospital, and I signed a consent form for my operation that read more like a post mortem. It really scared the life out of me and I was convinced I wouldnt survive the operation. I think its the bravest thing Ive ever done walking into that anaesthetic room and being put to sleep. But I had no choice. This was my only chance.

A few hours later, much to my surprise, I came round in ITU. In AGONY!! My first reaction was 'Blimey, Im still alive!!'