Saturday, 15 December 2007

So sad....

I post on a forum for Kidney Cancer patients.  We are a small, close little family with maybe 20 or so of us, mainly patients but a few wives of patients as well.  We gain support from each other, encourage each other and it generally really helps to feel you are not alone.

One patient, a chap about the same age as me, was diagnosed with his cancer at the same time, and with the same staging.  We both developed secondaries in September.  I had surgery and went on to have IL2, he went on to to a Sutent trial.

I have just heard, from his wife who writes on the forum, that he is now in a Hospice and terminal in the short term.

I am gutted - absolutely gutted.  We have been fighting this awful insidious disease along side each other.

God bless you Kevin, and your wonderful wife Kitty......



Wednesday, 12 December 2007

See you next year!!

The fog is lifting at last and Im starting to feel more human again.  Still very weak and tired, but the swelling has gone down on both my arms and my appetite has returned - which is a good job because Ive lost 14kg in the past month!  The only major side effect Im left with is the ITCHING !!  Its driving both me and Martin mad as it makes for some very disturbed nights sleep.  Still I suppose its a minor irritation in the grand scheme of all thing IL2.

Im still on Warfrin for the clot in my arm, and will be for the next couple of months.  I go to the Anti Coag Clinic to have my blood checked every week and I must be the youngest there by about 30 years !  Even the doctor was surprised to see me and had to check I was at the right clinic.  They are sorting me out a regime for our holiday - everyone has been wonderful about it - it seems nothing is too much trouble for them.

Talking of being wonderful, I have to say how fantastic all the doctors and nursing staff have been during the past month.  Cat (Prof Hs Reg), Sarah (Dr Ps Reg) and Dr P himself have all phoned me at home over the past week just to see how I am and for a chat.  They are so kind and caring - I honestly cant speak highly enough of both teams - here at the QE and at Christies.  I feel so incredibly lucky to have them on my side.

I think Martin was feeling left out of all the medical attention flying about so he decided to get himself a case of the shingles.  Fortunately a very mild dose and our GP put him on anti virals straight away which have really helped.  It was probably caused by all the stress hes been under, bless him.  He really needs a break as much as I do - hes been fantastic keeping everything going here at home and looking after me - scratching my back etc...!

Talking of having a break - 4 days to go to Brazil !!

Im really getting excited now and have started sorting out my clothes to take - which is strange when its so very cold here.  It was 36 degrees in Rio yesterday so I dont suppose Ill need many !  Its quite a long journey to get there, Frankfurt first, then on to Rio.  About 18 hours travelling in total which I know is going to be quite hard for me but Im sure the excitement will carry me through.  It feels like such an adventure and a real experience for the kids.

Its been almost 10 months since I started this Blog and such a lot has happened.  There have been some very grim times when I didnt really expect to be seeing Xmas.  But there have been some wonderful uplifting moments as well.  Such as reading all the wonderful kind supportive comments on here. 

Id like to wish everyone a very Happy Christmas - but more than that a very HEALTHY New Year....

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Wednesday, 5 December 2007

Noel, Noel....

Yesterday I learnt how very close IL2 had come to seeing me off.

I had an appointment with Dr Ps registrar for routine bloods and a check up after last week.  It took all my energy to get dressed and out of the house and I could barely hobble from the car into the hospital.  First I had an ultra sound on my right arm because it has blown up like a balloon - and my shoulder and chest.  I have a blood clot in my arm pit caused by the PIC line - so now I have Clexane injections and Warfrin to take every day.  Brilliant.  I think Im single handedly keeping the pharmacutical industry alive with all the drugs Im on at the moment.  I was really worried this would affect my flying in a couple of weeks but nobody seemed concerned about it.  Apparently its not uncommon for this to happen.  So now both my arms are swollen and Im covered in a lovely bright red rash all over - I look like Mr Blobby !

Sarah, the registrar, confirmed I wouldnt be having any more IL2 due to my 'severe' reaction to it during the second week.  Its such a terribly toxic substance and I can see why patients have died in the past from this treatment.  To be honest my memories are a bit hazy, which is probably a good thing, but Im having some very scary nightmares at the moment which Im sure are in part flash backs.  I shall be having a CT scan in Janurary to see if its had an effect.  After all, I did manage 11 treatments so there is still a chance the IL2 has done some good after all !

Less than 2 weeks till we go to Brazil and Im panicing slightly I wont feel well enough.  I still feel so dreadfully ill.  I know its early days and last time it took a good week before I was feeling better so Im just resting as much as I can and trying to eat well.  And smothering myself in Doublebass cream to try and stop the itching and peeling.  How many layers of skin is a person supposed to have?....because Im sure Ive shed at least 10 by now !


Saturday, 1 December 2007

Twice as bad......

Thats what the nurses said.  The second week would be twice as bad as the first.....except it wasn't.  It was a million times worse.  Ok, slight exaggeration there, but it really was unbeliveably dreadful.

I was feeling quite positive when I went in on Monday morning and had my new PIC line inserted into my right arm.  My left arm was still quite swollen but nobody seemed very bothered about that, all my blood tests had come back as normal and they were keen to start treatment as soon as possible.  So after the usual bucket of pills, little bags of fluid, and standard baseline observations my first teeny bag of IL2 was soon dangling from my drip stand.  Martin kissed me goodbye, promised to ring later, and said he would see me at the end of the week.  I hate that bit - I get SO home sick.  I miss him, I miss the kids, the cats, my house - everything SO much.

I didnt have long to mope though, the first side effects kicked in a mere hour later and I was soon shivering and shaking on the bed.  Nice nursey was soon there with my Pethidine - but the silly girl had forgotten the IV Maxalon I have with it to prevent sickness.  So within 10 minutes I was retching away.  Just to make sure I was having a really spiffing time the IL2 green poo returned, in diahrroea form, so I spent most of that night sitting on a commode hunched over a vomit bowl.  Not an auspicious start.

By lunch time the next day I was feeling a bit better, and after a morale boosting visit from Cat, Profs registrar, I agreed to number 2.  And it wasnt that bad really, especially compared to the night before.  I even managed some sleep after the Pethidine this time (complete with Maxalon)  It still took me a while for my BP and temp to recover though.  It seems IL2 is cumulative and this is what makes the second week so hard.  Instead of 8 hours between treatments I was needing 13 or 14 - which doesnt really matter, it just means you cant get as many in during the week.

It was Wednesday evening before I was ready for number 3.  I was still leaping on and off the commode at regular intervals, despite several drugs to try and stop this, but felt prepared for the next one.  If only I had known- NOTHING could prepare me for what was about to happen.  I remember trying to watch 'Im a Celeb' - but not very much after.  My temperature, which had been behaving itself up until now, rocketed to 39.7, and my BP plummeted to 47/24 - I was still needing the commode regularly and because of my very low BP every time I sat upright I fainted.  Several times I found myself on the floor wrapped up in the drip stand and dinamap - having made a mess.  I cant remember things very clearly, which may be a blessing, but I do remember thinking 'this is it Im going to die'....and actually being relieved about it.  It was sheer hell.

I think it was about 11am on Thursday morning when I was sitting in bed, still soaked in sweat and shaking, that Andrea and Cat came in to announce my blood results were 'abnormal'......'Never' I thought - 'what a surprise'  I needed an urgent blood transfusion as my Hb was 8.2 (normally it would be about 12) plus my potassium, magnesium and calcium were all way too low.

'By the way' I said...'Ive had enough - I cant take any more'.  They didnt seem altogether surprised at this and didnt try to persude me otherwise. 

I rang Martin and begged him to come up - I couldnt stand being on my own any longer - and he arrived a couple of hours later just as my first bag of blood was going up.  I could tell by the expression on his face that he was shocked by my appearance.  I still hadnt managed to make it to the bathroom yet so wasnt aware of exactly how awful I looked.

I wanted to go home - thats all I could think about, and nag the nurses about.  Let me go home - I dont care how ill I am just let me go home.  Adam, the young doctor on duty that evening wasnt at all keen.  He wanted me to stay in for a couple of days to recover but I whinged and whined and persuaded him Id be better off at home in my own bed.  My BP had just about reached normal levels again. temp was under 38, so it was decided I could go.  With 2 enormous bags of TTOs (drugs to take home)

We finally left about 10pm with me curled up on the back seat of the car wrapped up in a duvet.  Maybe it wasnt the wisest thing to do, but at the time it seemed the right thing to do.  Whatever was going to happen I needed to be at home.  I went straight to bed and had a very strange nights sleep full of weird dreams and I kept waking Martin and talking nonsense to him.  I was hot one minute, cold the next, and generally very agitated which Im sure scared him.

Friday morning and I finally came round properly.  And had a good look at myself.  Similar to the week before my skin was peeling off everywhere.  My right arm is now as swollen as my left - I look like Popeye from the waist up !  And Im covered in bruises and aches from where I fainted and banged myself. My mouth is swollen and sore and I cant eat anything, not that I want to right now.  My bottom is red raw from being constantly on the loo and my poor fluffy is that sore from weeing IL2 its actually bleeding.  Basically I look, and feel, a mess.

But Im home.  Just that fact makes me feel better, as if Im on the road to recovery.

Would I do it again?........NO NO NO !!!

Emphatically NO.  Its just too harrowing...too painful...too awful for words.  It makes you too ill......

However, when I have my scan in Janurary...and if it shows IL2 is working....well...who knows?