Sunday, 25 November 2007

Once more unto the breach....

Itch itch itch itch ITCH !!!

Its driving me mad!!  I spend all my time rubbing up against things or begging Martin to scratch my back - I feel like Baloo, the bear from the Jungle Book !

Ive tried everything, every moisturiser under the sun, Piriton - nothing seems to work.  I dont think its actually my skin, I think its under my skin, some kind of allergic reaction.  Im not too worried as Ive heard its a common side effect but it does drive me bonkers at times.

Apart from that Im feeling well, much better in fact.  My arm is still a bit swollen but its a lot better than it was.  Just in time to go back again tomorrow.  And Im ready, more determined than ever in fact.  I still feel so very lucky to have this chance, a chance not many kidney cancer patients get, to get rid of this awful disease.  And if it means another dreadful week in hospital then its worth it.  Every single moment. 

So bring it on !!


Wednesday, 21 November 2007


.....very slowly Im starting to feel better - stronger.

I had a wee bit of a set back, my left arm was still very swollen on Monday so I gave the PIC line team a ring at Christies to ask for some advice.  I was told I needed an urgent scan on it to make sure I didnt have a clot.  The lovely nurse told me she would organise everything.  And she was as good as her word, a short while later Dr P called and said his SHO was waiting at the QE for me.  So off I trotted and had my scan which was clear, thank goodness.

The next morning I had an appointment to see Dr P anyway to have my bloods checked and he had a look at my, by now very swollen, arm.  After a quick chat with Andrea at Christies we all decided it was cellulitis - so now Im on mega anti biotics to try and clear it up before next Monday.

Im so very tired all the time, I fall asleep at the drop of a hat, sleeping about 14 hours a day.  I guess its my bodys way of recovering.  Appetite still isnt good and I still cant taste anything but Im managing to eat small meals.  Im still shedding skin like mad, but Ive discovered one benefit of this, the skin on my face is now baby soft and a lot of the blemishes have disappeared.  I guess its like having a chemical peel.  I shall have to be very careful in the sun and use a very high factor sun cream.

Just 4 days till I go back again.  Im finding it increasingly difficult to remain positive because I know whats in store for me now.  Im trying to focus on this time next week when it will all be over - for a couple of months anyway.


Saturday, 17 November 2007

Bright Green Poo


Monday 12th November we walked into the Procedure Unit at Christies to be met by a lovely specialist nurse called Lesley...and I promptly burst into tears.  I think it was the shock to be honest.  Id only known for a few days I was coming in for this treatment after weeks of will she/wont she and in the end it happened so suddenly.  Id spent the past few days preparing for my abscence from the house, trying to make sure things would run smoothly without me so consequently hadnt given myself much thought at all.

I felt such a ninny.  Fortunately Lesley didnt, or didnt show it anyway, and sat us down in a cubicle and went to make us some drinks.  (Mines a large scotch please)  She then very patiently explained the procedure to insert a PIC line in laymans terms, which was a good job as I appeared to have left my brains at home.  She left me to get changed into a gown and lie down waiting, gripping poor Martins hand like a vice.  When she returned with this huge trolley she was gowned up too, as if for theatre, with just her glasses peering through her gown.  She was very friendly and chatty throughout the procedure, which consisted of local anaesthatic injected into the left vein in my arm (it took her a while to find that, for a while I thought Id left my veins at home as well) then making a hole and passing the long thin blue catheter up the vein, into my chest and round and down.  It honestly didnt hurt a bit.  I was left with about 3 inches of bright blue tube hanging out.  A quick trip to Xray to check it was in the right place and that was that.  All done.  Upstairs to Nathan House to be shown into my (very lovely) room.

Leanne, a pleasant enough nurse but with way too much make up, admitted me and then Prof Hs registrar came and had a chat and got me to sign a consent form.  I changed into my little shortie pyjamas, climbed into bed and we were off.

Martin had to leave at this point, even he needed an hour an a half to get back home for the kids return from school.  So there I was all alone, and thats the way it stayed all week.

The nursing shift changed and I had a nice young man looking after me - and he wasnt even gay!

So it started - a couple of small infusions of stuff, a veritable bucket of tablets to prevent hallucinations, fits, sickness, another small infusion of glucose and then, finally, the IL2.  Which came in a teeny 100ml bag.  And only filled about a third of it.  And was clear.  I expected it to be neon blue at least and maybe glowing and pulsating.  I lay there waiting to feel something as it flowed into my veins - but nothing.  In 15 mins it was gone and a normal drip in its place.  How disappointing.  No reaction whatsoever.  I mentioned this to the nurse and he said it takes a couple of hours to 'kick in' so I made a note of the time, settled back, and watched the telly.

9pm, typical, just as 'Im a Celeb' is starting, and I get a few weird sensations.  Wave after wave of panic flood over me.  My heart beats a little faster.  The middle of my back aches really badly.  But nothing else.  I have a couple of paracetamols for my back and fall asleep.

Waking early the next morning I toddle off to the bathroom to wash and clean my teeth only to return to a new nurse, a lovely girl called Carla, who is waiting to give me my next treatment.  Number 2.  "Whats times breakfast" I ask......"In a couple of hours, but you wont be wanting any".....Oh dear.  So teeny bag number 2 goes in, another bucket of pills and a cup of coffee and I settle back to watch the news.

Its actually 2 hours and 10 minutes.  Although I guess all patients are different.  It starts with a chilly feeling, pulling the blankets round you, shivering a little - then bang!  It hits you.  Full blown uncontrolable rigors.  Teeth chattering, body shaking so hard I thought I would fall of the bed.  Pounding headache.  Every bone in my body screaming with pain.  Carla was there straight away with the Pethedine - which made me vomit - so then a big dose of anti emetic.  I sort of passed out then for a couple of hours and came round soaked in sweat, with a temperature of 39.  The nurses do your 'obs' every 15 mins during this phase as your BP plummets (at one stage mine was 55/37 which in my nursing days would have been a resus call) and your temp rockets.  It was now 6 hours since my last treatment, just another 2 till the next.  In this time your obs have to be within certain parameters, you have to wee, be concious and aware, then you can have the next one.  A mere 8 hours between treatments.  And this carries on until your body cant take any more and doesnt recover quickly enough.

Tuesday and Wednesday passed in a blur of rigors, vomiting, taking pills, having treatments and injections, refusing all food and drinking loads of cold water.  I think it was early Thursday morning when I realised I was on number 7 - 'gosh Im doing well I' thought - well ofcourse I spoken too soon.  I had my Pethedine and - it didnt work.  I was still having rigors.  Lovely nurse gave me some more and I gratefully sank down into sleep. 

And a lovely sleep it was as well - until I was most unceremoniously hauled up the bed, had the bedclothes ripped off me and an oxygen mask shoved on.  A fan was then placed inches from my face at full blast.  I was given both paracetamol and Ibruprofen IV.  I heard a voice mutter CCU.  Apparently Id been delerious, with a temp of over 40, and talking to a non existant nurse in the corner of the room.  Yep, Id gone loopy.  Which is a shame because it was the only time in the past 3 days Id been comfortable!

This was pretty scary to be honest, to have nurses and doctors flapping around me and yet I didnt feel ill.  My next dose was due in an hour and my temp had to be below 38

It took a couple of hours for my temp to come down enough and for me to squeeze out a few drops of wee so I could have treatment 8.  Eight!  Thats really good.  Unfortunately even with very close monitoring the same happened again, temp over 40, BP in my boots, I went loopy.  So that was that - my body was saying 'NO MORE'

I have to admit it was a relief.  Thursday evening I came round properly and began to survey the damage done to my body.  I was swollen up - my fingers, arms and legs were almost twice their normal size and the skin was stretched and sore.  My mouth, tounge and lips were cracked and sore - all I could manage were sips of cold water. Every joint in my body hurt.  My skin was dry and flaking off in sheets - I looked like a lizard!  And my poo was bright green,  Apparently thats normal - IL2 gives you bright green poo - but it comes as a shock when you first see it.

I was still on shed loads of drugs but very keen to come home so eventually the doctor said yes to Friday evening.  I still couldnt manage to eat anything, not even a bit of jelly, but Id lost my sense of taste and appetite anyway so that didnt matter to me.

I had my PIC line out the next morning, my arm was so swollen it had to be removed.  I was weighed and had put on 6kg in 4 days, this is fluid ofcourse and Ill soon wee that away in the next week or so.

Martin picked me up and brought me home, together with a carrier bag full of drugs, and I went straight to bed.  Im so weak still, can hardly walk upstairs unaided.  Cant sit out of bed for more than about half an hour.  Still not eating much due to awfully sore mouth and tongue and no sense of taste.  Still peeling like a lizard - and itching - which drives me wild.  Every inch of my skin is scaley and dry and no amount of moisturiser helps.  And my poo is still bright green.

But I did it.  Eight treatments.  Which is a bloody good start because it was SO hard. 

But maybe not as hard as it will be next week when I go back in to do it all again !

Friday, 16 November 2007

Home Sweet Home...

Im back home....

Both looking, and feeling, as if Ive been dug up.

Yes it was definitely as bad as I was expecting - in fact it was worse.

But now Im home, and Ill write more about it when I have the strength to sit here for more than 5 mins.



Sunday, 11 November 2007

A BIG surprise.....

Yes, I know this is my third 'last entry' for a while....



He just walked through the door yesterday evening.  I couldnt believe my eyes, I just dropped the t towel and burst into tears.  And then I shouted at him ofcourse !  What on EARTH is he doing back here when he should be having a fabulous time in Oz still?  And thats why he didnt tell me he was coming home, because he knew I would try and talk him out of it.  He said he just couldnt stand being so far away with everything that was going on and he just wanted to be here with the family.  I burst into tears again.

He managed to suspend his working visa so he can return to Oz at any time and use the rest of it, change the date on his return ticket, and had been travelling since Thursday evening.  He even got a mate to pick him up from the airport so he could really surprise us.  And he sure did !

What a lovely boost that was - he looks SO well, all tanned and healthy.

Ofcourse, hes also brought back 2 enormous bags of washing - but Im ignoring those !



Friday, 9 November 2007

The Scan Man

So, 'Lewis' got me there in record time again today.  He says he hates driving on the M6 but I can positively see the imaginary starting flag go up in his mind the moment we set off.

Christies is much bigger than I originally thought.  Much much bigger.  It seems we had only seem one small wing before.  After wandering the corridors for a while we managed to find the CT Dept - which was packed.  The place is like a conveyor belt, there must have been another 30 patients all having CT scans.  They have 2 machines there so they can sure rattle through the list.

I found this a bit disconcerting and did my 'rabbit caught in the headlights' act again.  The staff were lovely ofcourse, so friendly.  But I miss my Dr M (the scan man).  We used to have a laugh with him, mainly taking the mickey out of the other consultants.  I guess its just a matter of getting used to new doctors and nurses.

Anyway, it was all over quite quickly and painlessly and we set off home.  And sat on the M6 for half an hour going nowhere.  (I then found out its true, he really DOES hate that motorway!)  Eventually arrived home to be told by Cat that a doctor from Christies had been trying to get hold of me.  Crap.  Oh please dont tell me I have to go back??

No.  Apparently I have some 'thickening' of my colon.  Now this IS my territory - bums and bowels - and I know what that could mean so the poor doctor was then bombarded with a dozen questions from me.  I bet she wishes she had never called now !  Ofcourse I know from a CT its impossible to tell whether the 'thickening' is infection, something like colitis, or a neoplasm, but it didnt stop me cross examining the poor woman. 

So now I have something else to worry about, although really at the end of the day it makes little difference.  If it is another metastatic rcc tumour then IL2 is still the way forward.  And the area its in I know its possible to resect it.

I just want to get up there on Monday and get on with it now - this pigging disease has had enough of my time and energy and its about time it was shown who's boss.




Thursday, 8 November 2007

See you soon !

This may be my last entry for a while for a week or so anyway.

Tomorrow I go to Christies for a CT scan - this is to provide a baseline in order to check if the IL2 is working or not.  Im a bit nervous to be honest, I havnt had one for almost 3 months and although Ive had all the soft tissue tumours removed that appeared (and the horn went of its own accord), a lot can happen in 3 months.  It will be reported straight away though, they have this super dooper computer thingy that does it, so I wont have to wait long for the results.

Andrea, Prof Hs specialist nurse, called yesterday and we had a long chat about what the treatment involved and what I could expect.  She was lovely, I explained that even with my nursing background I felt completely out of my comfort zone and she took the time to put me slightly more at ease.  Im under no illusions though Im in for a very rough ride.

Im being admitted on Monday morning to have my PIC line fitted and then will go to Nathan House, one of the wards where they do IL2.  This sounds more encouraging, at least it isnt a full on ITU - more of an HDU with you having a specialised nurse looking after you.  AND there is a telly!  So I shall be able to watch 'Im a Celeb' (I know Im sad arnt I !) if Im up to it.

Martin has taken the day off on Monday but he will have to leave in time to get back for the kids.  Then I think he will only be able to visit once again during the week so Im going to be very much on my own.  I dont really mind that.  When Im ill Id rather be left alone and Im not sure I want either him or the kids to see me so poorly.

So thats that.  All sorted.  All I have to do now is pack my pyjamas, cross my fingers, and hope and pray I can beat the odds

Thank you everyone for all your good wishes and prayers, they really mean a lot to me.


Tuesday, 6 November 2007

Like buses.....

.......You wait for ages then 3 come along together.

I was still celebrating the news about my Sutent application this morning when I had a call from Christies.  From the man himself, Prof H.

In a nut shell my tumour is 'the best it gets' as far as responding to HDIL2 is concerned.  And with my good health and relative youth (koff) the chances of my responding and getting that elusive cure is about 50% according to Prof H. (Im not even thinking about that now - it sounds too good to be true doesnt it?)

And he wants me to start next week.  Now Im not often lost for words but I sure was then - I muttered something about going to Brazil on 18th Dec and he said it should be fine - I will have 3 weeks to recover.

So Im off to Manchester to start treatment on Sunday - and Im terrified !!  Maybe terrified isnt the right word, very apprehensive though.  Very very apprehensive.  IL2 is so toxic and has such unpleasant side effects.  And being in ITU for 8 days wont be much fun either.  I think Ive just got to surrender myself to it, have faith in the doctors and nursing team up there, and focus on Xmas on Cococabana.

Basically Im very very lucky - Ive got the best chance that IL2 will work - and if it doesnt I have Sutent lined up as a 2nd line treatment.

How things change.

The outlook was so bleak a few weeks ago - it just goes to show you should never give up on yourself - because you can be sure your doctors wont.  And in Dr P and Prof H I know I have two of the very best.

So next week I need loads of positive thoughts please winging their way up to Manchester.


Monday, 5 November 2007

Fabulous News !!!

Dr Porfiri has just called.....literally.

He had the result of my application for Sutent this morning from the PCT and.....


I GOT IT !!!!!!


Saturday, 3 November 2007

No Mans Land.

I feel as if Im sitting in No Mans Land.  Not sure whats happening or which way to go.  I still havnt heard from Christies, Im not sure if thats a good or bad thing, but Ive been filling my time reading up on IL2.  Im quite sure that IS a bad thing.  The more I read the more scared I get.  The most information comes from the US where it is routinely used for suitable patients.  Here in the UK its rarely used, mainly because of the care costs involved, keeping a patient in ITU for weeks (good old NHS - all down to money yet again)

And ofcourse our holiday is rapidly approaching - 6 weeks away now.  The one thing I have learned from all my research is that if I have IL2 soon there is no way I will be fit enough to go.  NO way.  I need this holiday.  We all do.  And its more than just a holiday - I havnt seen my brother for 6 years, and Ive never met my nephew.  And this may be my last chance.  So....can I postpone my treatment till I come back?  It would only be by a few weeks.  I know Dr P said now is absolutely the right time to have it, whilst Im so well and my immune system seems to be working well - horn still gone etc.. but surely a few weeks wont make much difference?  Psychologically it would be better and hopefully my physical condition wont have deteriorated - I may even come back stronger.

Can I afford to take the risk and wait?

And if I decide to have IL2 before - I may never get to go.

Ive had a little bit of good news.  My application for Sutent is being reviewed on 13th November - and Dr P is very confident it will be approved.  Once it is approved he can prescribe it whenever I need it.  So if IL2 fails, or I cant withstand the treatment, I shall have that to fall back on immediately.

Martin checks me regularly for lumps - as he was intructed to by Dr P.  He seems to quite enjoy this and I have to admit Im partial to it too.  He got all excited the other day when he found one on my little toe - but it turned out to be just a corn (phew)

So....back to No Mans Land - and waiting......