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......

Jane

 

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....

ElfYourself™ : Brought to you by OfficeMax®

Jane

 

 

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 !

 

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?

 

 

 

 

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 !!

 

Slowly....

.....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.

 

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 !

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.

 

 

A BIG surprise.....

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

But.......

JAMES IS HOME !!

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 !

 

 

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.

 

 

 

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.

Jane

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.

 

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 !!!!!!

 

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......

 

Back down to earth....

So, this morning I saw Dr. P.

And then I bought the pyjamas.

I think I knew really, deep down.  I think I knew it was a mistake to be seduced by the idea that I had 'cured myself'.

I bounced into his room, accompanied by a nurse, Marie, who I happen to know.  I told him how well I felt, and what had happened, and how my horn had disappeared.  He just smiled and said 'Yes, kidney cancer does that, its very unpredictable.  But it will come back.  You are a grade 4 aggressive.  It will come back'

I suggested a CT and he just said 'Yes, you will need one before you start IL2'

I had a blood test - and he just smiled in that lovely kind way he has and said 'Prof Hawkins will be in touch very soon.  They have the 'blocks' of your tumour now and are producing the markers.'

So I went to town and bought the pyjamas.  And cried all the way home.

 

 

Her name was Lola...she was a showgirl....

For the first time Im allowing myself to think about our holiday to Brazil at Xmas - and get excited about it.  Im just hoping against hope it isnt snatched away from me at the last moment.

My brother, Matt,  has lived in Rio for the past 6 years, having married a lovely girl called Ana.  Shes a native SA and it was only 2 generations ago that her family lived in the rain forest.  Thats some antecedents isnt it?  They now have a gorgeous little boy called Luke who Im dying to meet.

Ana also has this huge extended family and we will be staying with one or another of them most of the time.  It sounds as if our time there has already been planned out, Xmas Day with her parents and ofcourse New Years Eve on Cococabana - which is supposed to be quite a spectacle.  A bit like Carnival - all fireworks and samba-ing.

Were also staying for a few nights at an eco-lodge - in the Amazon but right on the beach too - it looks like paradise.

Pousada Naturalia - Ilha Grande - Angra dos Reis - Rio de Janeiro - Brasil

It looks amazing doesnt it?  But I bet the spiders are HUGE !!

So Im starting to get excited about it - tentatively !  The tickets are all booked and paid for and we are due to fly out on 18th Dec.

Im still feeling well, the horn has disappeared completely, and Ive been reading up on foods that boost your immune system.  If this IS my immune system kicking it I want to feed it as well as I can.  So its Kiwi fruit and Avocado (not together obviously!) for me!

Dr P on Tuesday - I cant wait to hear what he says.......

 

 

The 'R' word.

Ive resisted writing this because to be honest Im scared of tempting providence.

But, as this is a comprehensive account of my illness - and it is 'mine', everyone is different, I have to really.

Something very strange is happening.  Last Friday, all of a sudden, I felt incredibly well.  Just like flicking a switch.  I felt, well 'normal'.  No aches, no pains no 'grotty under the weather' feeling.

Then on Saturday that wonderful monthly experience we women have returned.  An event in itself because I had been told their absence was due to my being so ill.

At the same time I noticed my 'horn' was shrinking - at first I thought I was imagining it or it was wishful thinking, but its the size of a pea now - hardly noticable.

Anyway, I mentioned it to a couple of friends who have a lot more experience than I do in KC and they both mentioned the 'R' word - Remission.  Apparently even though it is a very rare occurance there are well documented accounts of spontaneous remission from advanced KC.  Sometimes only temporary, occasionally complete.

Im trying not to think about it - but I still feel really well. 

I havnt heard the final results from Manchester yet and Im due to see Dr P next Tues so it will be interesting to hear his take on this.  I think I need another CT.  I really dont want to start any treatment until I know exactly whats going on.

I dont make things easy for myself do I ?

Ps...I havnt bought the pyjamas yet

Catherine and Grace

Still waiting.....

Ive been sat next to the phone for 3 days now - willing it to ring.  Nothing so far.  Prof H. did say I would hear by 'Monday'.  I hope so.  I have a lot of things to organise before I surrender myself to the tender mercies of IL2.

I need some new nightwear.  I dont normally wear anything in bed, not even Chanel No.5.  Sometimes maybe a squirt of Body Shop stuff if I think Im on a promise.  So I must buy some decent pyjamas.  NOT nighties.  How many times when Ive been nursing have I had a flash of somones 'fluffy' as they turn over in bed, thanks to their nightie.  Plus the nurses will need to have access to my PIC line, and in a nightie they would have to hoike it up around my neck.  I shall buy short pyjamas.  Half a dozen pairs.  Although at the end of the day Ill be feeling so grotty I dont suppose I shall care if Im lying there stark bollock naked - but the nurses might...haha

This is a very strange position to find yourself in.  Sitting here, feeling GOOD today, and yet desperately hoping for a call, the end results of which will make me so terribly ill.  Or maybe even kill me.  There is still that 4% chance that the treatment can prove fatal.  Id be very pissed off if that happened and I hadnt worn all my pyjamas.

 

What a day....

So, yesterday we went to see Prof Hawkins at Christies in Manchester.  And got there an hour early as I had 'Lewis Hamilton' driving.  Better to be early than late though I guess.  Christies is quite a small hospital really, it specialises in cancer only.  Its quite modern and clean and has a nice little coffee shop in the entrance.

Anyway, I booked in at the Derek Crowther Unit (I wondered if he was a relation of Leslie) went and had some bloods taken and was shown into the 'Relaxation Room'.  Now I know a lot of patients love these rooms - all pinky/purple lighting, comfy sofas and whale song piped in - but personally I HATE them.  I must have stayed in there about 20 seconds, then, dragging Martin behind me made for the normality of the coffee shop.

We had a coffee, read the paper, and went back to wait to see Prof H....and waited.....and waited.  He was in a meeting.  2 hours later we got to see him.

Then we had a shock.  Apparently I AM eminently suitable for HD IL2.  And this is what he is offering me, in fact strongly encouraging me to have.  Im young (hurrah), have an excellent performance status, small tumour volume (the grading doesnt matter after all) and have the right 'type' of tumour.  He is just waiting for one final result but he is very confident that HD IL2 will give me a 'very good chance'.

Well......we were both a bit shell shocked to be honest.  He also used that little magic word 'cure' - twice.  Im so wary of getting my hopes up yet again, but to be honest I cant help it.  The chances of my responding to HD IL2 are approx 20%

20% !!!!

Thats mainly because he thinks I can withstand the dreadful treatment well.  20% may not sound brilliant odds to anyone else but to me they are fantastic !

The treatment is pretty harrowing.  And I will have to go to Manchester to have it, away from Martin and the kids.  Its so toxic that you have to be in ITU and very closely monitored.  I shall be in for 6 - 8 days at a time during which I have IL2 every 8 hours up to a maximum of 14 doses.  But most patients only manage about 8 doses before their body cant take any more.  Then you have a couple of days to recover and then go home for a week.  Then back in again for another 6 - 8 days.

Then you have a couple of months off to recover, have a CT scan, and start all over again up to a maximum of 5 courses - so thats just over a year.

The side effects are horrific so Im not going into them here and now.  Prof H. says Im not allowed to look at the monitors while Im being treated because as an ex nurse it will scare me to death!

I shall ban Martin and the kids visiting - I dont think Ill be up to visitors anyway and I really dont want them seeing me so ill. 

So...Im just waiting for a phone call from him - with everything crossed.

 

 

Normal people....

On Sunday we had a lovely day out.  We went to a christening, and mixed with 'normal people'.  By that I mean people who were unaware of my illness so for a few hours I could almost forget about it.  Almost.  When you are first diagnosed with cancer everything changes, it completely colours your world.  So its such a nice change to 'take a break' from it.

It was great to dress up, put a frock on and wear high heels - although its been a while since I wore them, Im sure I was walking like Dick Emery !

The overall effect was good though and I had lots of people, who I havnt seen for ages, tell me how well I looked.  Which just goes to show doesnt it?  You can be seriously ill and yet look healthy and well on the outside.  So I just smiled at everyone and said "Yes Im well thanks" when people asked.  To be honest only family and close friends know anyway and maybe a christening isnt the best place to announce I have a terminal illness!

One positive aspect to come out of this is that our family, Martin, me and kids, have become so much stronger.  We always were a close family, but now we seem really united.  Not just them looking after me, but all of us looking after each other.  The kids especially.  They still bicker occassionally but its as if they recognise what the other is feeling, and react accordingly.  Just little things, like making each other drinks, choosing which film to watch without arguing, Catherine helping Edward with his homework - its nice to see.  Its comforting.

I miss James dreadfully.  The house seems so big and quiet without him.  He calls regularly, every few days, and tells us what a brilliant time hes having.  I have a feeling he is checking up on me too, without saying as much.  Ive told him the bare bones of whats happening right now but keep it very light hearted.  Hes doing exactly what he should be doing, getting on with life.  Hes still staying with Karen near Brisbane right now but plans on moving up to Rockhampton and meeting up with his mates soon.

So today is the big day.  Im off to see Prof H.  Im trying not to get my hopes uptoo much.  I need to get my 'horn' removed as soon as possible, its starting to hurt now and its getting quite big.  Martin jokes and says he could hang his jacket on it !  Talking of lumps, which I seem to very regularly, Im growing yet another new one.  Just under my right breast near where I had the 5 removed a few weeks ago.  Im growing a 3rd boob! 

Id like to see M&S fit me with a bra when it gets a bit bigger!....haha !

 

 

Quandry....

So, yesterday I woke up feeling much better.  They grey skies had lifted (figuratively and literally) and I was feeling in a much more positive frame of mind.

Then I had a phone call from Professor Hawkins' (One of the top blokes in the country on RCC) secretary.  And he wants to see me next Tuesday at Christies Hosp in Manchester.  I know Dr P sent him my histopathy for his opinion but I really didnt expect to go and see him.  So ofcourse now my mind is working away 19 to the dozen wondering what on earth he is going to say.  Surely he wouldnt ask to see me simply to say 'IL2 wont work - stick with Sutent'?

All this uncertainty is so stressful.  I had just settled down and now it seems Im being tugged off in yet another direction.  Its exhausting.  To be honest Im getting fed up with it, if I only have a few months left I dont want to spend them charging all over the country seeing different consultants.  And I certainly dont want my hopes raised, yet again, only to have them dashed later.

Poor Martin, Im sure he is fed up of it too - although he would never say so.  Ive tried asking him how he feels, or if he has any questions, and he simply says 'If you are happy then I am'.  And I really believe that.

Ps.....Ive just checked the Christies Hospital website.  And the Unit I have to see Prof Hawkins in is a designated clinical trials unit.  So I guess I know why he wants to see me now.

 

Grey skies...Grey day....

Im having a bleak day.  I dont have them very often, but today is bad.

I saw Dr P this morning at the Cancer Centre at the QE.  What a scary place.  Its huge, there must have been over a hundred people in there waiting.  So many cubicles and waiting rooms and treatment rooms.  I must have looked like a terrified wide eyed rabbit when i went in because the receptionist was so kind and kept telling me not to worry. 

This is the reality of having cancer.  Sitting and waiting with so many other people, some looking so ill, others looking like me ,quite well.  Numbers being called out.  Wheelchairs and stretchers awaiting their patient.  A 'Koffee Korner' where a couple of ladies with kind friendly faces make drinks.  'The Patrick Room' where all kinds of info can be found, and MacMillan nurses offer help and support.  Im not ready for that yet.  I scowl at them, daring them to approach me.  They dont !

Dr P is such a gentleman.  He had his Registrar with him this morning, she looks about 18.  I guess that means Im getting old.

Dr P submitted my application for Sutent last week.  With 'URGENT' stamped all over it.  He fully expects them to get back to him this week asking for further information and intends to reply immediately and 'set a fire under them' in regard to accelerating the process.  He is still very confident I should get it.  My 'horn' has grown significantly and needs removing.  But my need for Sutent is even more urgent.  Im going back in 2 weeks to see him and I need to start taking it then - one way or another.

So...being positive (or really really trying to be!) I have a week off next week.  Im thinking of going away for a few days on my own.  Just to write and 'be'.  Its a mere 7 months since I was diagnosed and I really havnt had time to catch my breath since then, its just been one thing after another.

Sorry for the gloomy entry today - I promise to perk up tomorrow x

 

Political prominance......

So, at last the appalling state of affairs that exists with the NHS that is the 'post code' lottery for funding some cancer drugs has achieved political prominance, by BOTH major parties.

About pigging time.

Jane Tomlinson, possibly the most well known cancer sufferer due to her fund raising during her illness, chose to die early, rather than use her 'fame' to get the drug which would have extended her life.  What an amazing woman.

Andrew Lansley, Shadow Health Secretary, spoke at length at the party conference in Blackpool on this very subject.  And now Gordon has jumped on the band wagon and promised to put and end to this inequity in what is supposed to be a NATIONAL Health Service.

Im very impressed with my own MP, Richard Burden.  Ive written to him on a couple of occassions and received very prompt posivite replies.  He has offered his support if I am refused funding, to write on my behalf to the PCT.  He also enclosed a copy of the PCTs 'exceptional case' policy, which ofcourse I already have, but it shows hes on the ball.

Ofcourse, interweaved in all this, family life carries on pretty much as normal.  It has to.  Its the only thing that keeps me sane at times.  Worrying about Eds PE kit, running out of toilet roll and bickering about what to watch on telly tonight keeps my mind occupied so theres little time for self pity.  Im lucky really in that I dont get an awful lot of 'pain' as such, its more discomfort really which can be easily dealt with by taking a couple of paracetomols and cleaning the bathroom!  Its true what they say, laughter and distraction really IS the best medicine.

Ive been checking up on the side effects of Sutent.  Pretty much the 'usual suspects' of nausea, vomiting etc... Sore mouth hands and feet, Ive bought some Aloe Vera toothpaste and special moisturiser ready (optimistic arnt I?...haha)  and the really weird one of making your skin go a greeny/grey !!.....Oh No !! I shall be turning into E.T. !

Well Im NOT having that.  I shall invest in a bucket of fake tan and look like Dale Winton instead !

 

 

Goat woman

My daughter, Catherine, has just started in the 6th Form.  And taken over by the sounds of it.  She has joined the Student Council and informed them that this year they will be supporting the James Whale Fund as their charity.  Which is no mean feat when you consider its a very strict Catholic school and usually sticks to Father Hudson Homes etc...  Mind you, I wouldnt take on the feisty little red head either - she can be VERY determined when she wants !

Something very peculiar is happening to me right now.  Im growing a horn !  Yes, a lump on my scalp....I think we can all guess what it is.  Its not very big yet, about the size of a walnut, but causes much hilarity in this house.....'Mums turning into a Goat'!  Goodness knows where I will get one next...my big toe?

Im off to varnish my hooves.....

 

 

That little magic word....

........Cure.

Its not a word used very often in regards to advanced kidney cancer - except in the phrase 'Im sorry but there is no cure'

So when you see it in relation to any particular treatment you grab at it desperately, convinced that you WILL be the one to benefit from this 'cure'.  That all will be well.  That the nasty treatment will be worth it because you will be 'cured'.

Last night I had a hefty dose of reality.  HDInterleukin2, which seemed to offer me the hope of a cure, it seems is unsuitable for me.  For quite a few reasons.  The main one being that my cancer histopathy has changed from a Grade 2 to a Grade 4.  Which is the most aggressive and unlikely to respond to IL2.

Even in those who are suitable candidates for IL2 the 'cure' rate is only 4% - a lot less than I thought and the same as the death rate from the treatment itself.  Dr P was so kind as he explained this to me.  He said he would ask Prof Hawkins at Christies (the real expert in IL2 apparently) for his opinion, but realistically it wasnt an option.  It wouldnt work.

So....what are we left with?  Dr P said I need to start some kind of treatment urgently and advised we apply for funding for Sutent now.  Well, Monday.  Which he is going to do.  He was quite optimistic about my getting it, my PCT has already agreed to fund it in 4 cases so that bodes well.

But, ofcourse, its not a cure.  Its a stabiliser.  Which has a 63% chance of working.  And could possibly extend my life for up to 2 years.  Without any treatment at all it seems we are talking in months. 

So thats that.  No more talk of 'cures'. 

Sutent has some quite unpleasant side effects of its own, and you have to take it for the rest of your life - which means until it stops working, which apparently it does eventually.  If it works in the first place !

Can you tell Im a bit depressed about all this?.....haha

It could be much worse though.  There is a blanket ban on funding Sutent for patients in Warwick, and many other places in the UK so I should consider myself lucky I should get it as a 1st line treatment.

Im going back to see Dr P the week after next at the QE as an NHS patient - THAT will be a shock !  As kidney cancer is a rare cancer we are lumped in with his testicular cancer clinic - hopefully there is little chanceof me being confused with another patient there !  By that time the application will be in and its just a matter of waiting, and it could take up to a couple of months.  If thats the case then we have decided to pay for the first couple of courses rather than risk waiting.  The rate Im producing tumours right now I just dont have the time to wait.

The PCT (Primary Care Trust) is in fact a kind of committee.  They make business and financial decisions and can you believe not ONE of them is a Clinician??  Not ONE doctor.  And these are the people we have to depend on for funding decisions of this kind.  To be allowed funding for Sutent you have to prove you are an 'exceptional case'  Sutent is routinely prescribed in the US, all over Europe and even in countries such as Mexico and Argentina - what the hell are we playing at here in the UK?  Dr P should have been able to write me a prescription there and then last night.  Instead we have to go cap in hand, begging, to a committee of bloody business men and accountants.

The whole situation is disgusting and needs changing NOW.  Sutent is an approved and licensed drug - its not some experimental treatment.  And more to the point it is the only treatment that routinely works.  How can they deny patients access to it?

So....last night was a bit of a blow in one way, but all is not lost.  2 years may not seem very long to a lot of people but just watch how much I can cram into it !  Brazil at Xmas (which would have been unthinkable on IL2) and ofcourse back to Oz as soon as possible.  And Ive always wanted to go to China.....

 

Not as bad.....

......as I was expecting really.  As a matter of fact Mr F has done a great job and I now have a smaller, but very pert, right boob.  Im rather wishing I had asked him to do the other one while he was at it !

The day didnt have a very auspicious start though, my anaesthetist popped in for a chat pre-op and asked me which toe I was having removed !  Not exactly confidence inspiring.  We soon got it sorted out though, apparently he had me confused with an 83 year old man.  Easy mistake to make I guess?....haha

So down I went at 12 and woke up at half past 2 feeling, surprisingly, ok.  I usually feel really grotty after a GA but this time I was sitting up in recovery chatting to the nurses.  It was nice to have only one drip and one drain this time.  I was back in my room shortly after where Martin was happy as Larry watching Sky Sports.  Mr F popped in and said it all went very well and all the lumps were removed and I could go home the next day when the drain was removed.

Lovely.  Stayed on sips of water all afternoon - chucked it all up at about 6 - then just slept till the next morning.

Drain out after lunch yesterday and admired my new pert 17 year old boob !  I havnt seen the stitches yet though, it has to be kept covered for a few days.  Its a bit sore, but to be honest not as painful as when he shot it with his biopsy gun thingy.

So - on to the next thing.  Mr D came to see me, he is passing me on formally to Dr Porfiri now, the oncologist, and unless I need any more surgery I wont see him again.  Which is a shame because we have built up such a rapport over the past 7 months and I trust him.  He will definitely get a Xmas card !

Im seeing Dr P on Friday evening.  We have decided to have a private consultation and pay for it.  There are so many questions we want to ask and I dont want to be constrained by NHS time limits.  This way we can really get a 'plan' sorted.

James phoned and hes up near Brissy with Karen, our friend there.  She hasnt seen him since he was 4 but she said she recognised him straight away!  Its 28 degrees up there right now, Im SO bloody jealous !  I just know hes going to love it there and will probably stay and get a job there rather than return to Sydney.  Cant blame him.  Shes taking him to see the old house in Peregian today, I wonder if he willrecognise it?

Anyway Im going to take it easy today, after all it is still less than 48 hours since my op, and prepare myself for what Im going to hear tomorrow.  I know it isnt going to be pleasant.

 

The next step....

The lumps in my breast, all FIVE of them, are indeed metastatic RCC.  Which has caused quite a stir because this has never been heard of before.  Bloody typical of me.

They are coming out on Tuesday, shouldnt be in for too long, a few days because I will need a drain.

I heard the results of the meeting yesterday too - the bare bones of it anyway.  I now have another new doctor, an oncologist called Dr Porfini who is on Prof Nicks team , who specialises in RCC.

He has decided Im going to have Immunotherapy.  I dont know which kind exactly yet but it will most probably be HDInterleukin11.  Which is VILE stuff.  It is my only chance of any kind of remission though, albeit it a very slim one.

The thinking seems to be that Im relatively young, fit and healthy (till Dr P gets his hands on me!) and can hopefully survive the treatment, so its worth a shot.  Ive nothing to lose really, if it doesnt work I can apply for Sutent then.

So, it seems the decision is made and Im going along with it.  Ill think about it over the next few days but I really dont have a choice, yet again.

SURELY its time for me to have a wee bit of luck?

Going out for a curry and bucket of red wine tomorrow night - probably the last Ill have for a while !

 

Ouch....

Ouch Ouch OUCH !!!!

Had an unexpected thrill today - Mr F took a biopsy of the lumps (theres 2) in my boob.  He seems to have quite a sense of humour though, after telling me it may sting a bit he got this 'gun thingy' and shot it into my boob - 5 times !  But it was ok cos there was a nice nurse there to mop up the blood !  I wonder how he would feel if I shot it into his nads a few times?

Anyway, that was just the start.  Then I had to go for a mammogram - now I dont know if anyone has ever had one but they put your boob in this machine and then squeeze it flat to take the xray - just the thing I wanted after having it stabbed 5 times.  It stopped bleeding after half an hour but in the meantime ruined one of my best bras.

Going back to see Mr F on Saturday morning for biopsy results, but whatever they are, and we are all 99% sure its rcc mets, they are coming out next Tuesday.  I should be in for a couple of days.  Honestly I think they will be naming a wing after me at that hospital soon !

The MDC meeting is on Friday so I have a whole day off tomorrow...think Ill slob around in my jim jams all day!

 

The Barstewards.....

Found out this afternoon that the Police health scheme wont pay for my Sutent.  They exclude chemotherapy in their policy and even when I pointed out Sutent isnt chemo they said that as it was 'chemical oncological treatment' it was still excluded.

Bummer

All other treatment I need, lump removal, scans etc I can still have in the rarified air of The Priory so I still feel pretty lucky.

So now Im busy gathering all the evidence required for an application for funding to my PCT, South Birmingham.  Luckily I have a few very experienced contacts who have been through this all before and know the 'drill'  The stronger your case to start with the less likely you are to be refused.  However, South B'ham PCT have yet to be tested so we cant anticipate their reaction.  I have my MP, GP, several Councillors and ofcourse Prof Nick and Mr D in my corner.  Plus loads of clinical evidence of the 'cost effectiveness' of Sutent.  A formidable team I think.

We shall see.

They certainly wont know whats hit them media wise if they refuse me !

As you can see from the above Ive decided, as long as Prof Nick agrees, to go for Sutent.  A clinical trial is just too much of a risk, Im feeling too well at the moment and want to stay like this for as long as possible.  Sutent is a trial of its own anyway.  No one knows how long you can survive with this drug, its so new.  So who knows? I may be breaking new grounds and shattering statistics anyway.  And all with half a boob!

Off to see Mr F tomorrow about my lumpy boob.

I wonder if he will pop a couple of implants in while hes at it....I could go in looking like Kate Moss and come out like Jordan !

 

Thank you....

.....to my new friends online for their kind words and support.

When I first started writing this Blog it really was for me only, an outlet, and maybe to show my children when the time comes that having an illness like this isnt all bad.  There are so many positives to be gained from it.

Death seems to still be the final taboo doesnt it?  Its a subject avoided by most people, especially when talking about someone still alive.  But you know it IS something that will happen to all of us eventually.  Most of us dont even give it a minutes thought until someone close to us dies, then we become aware of our own mortality for a short time - until we push it to the back of our minds again.  Thats the best way to be, for how can you live if you are so conciously aware of the fact you will die?

Right now Im focussing on the next few months.  Its very easy to go along with everything the doctors advise....'we can do this...we can do that' But the question really should be 'SHOULD you do that?'

Like I said, Im well right now.  So basically I have 3 choices.

1.  I go for the 'easy' option.  Sutent.  Which will hopefully extend my life but at what price?  Nasty side effects and the constant worry of whether it will work and if it does for how long?

2. I take a gamble and go for Inteferon or Intaleukin2...or even more risky a clinical trial.  Both kinds of chemo but with a very small chance of a cure (4%)  Im well enough to withstand the treatment but it virtually takes you to the very edge of death its that severe.

3. Tell them all to sod off and spend the next few months partying, drinking red wine and smoking and eating all kinds of rubbish and then leave with a smile on my face when I decide.....oh yes, ending it all MY way and when I want to is certainly an option.

Difficult isnt it?  Its a basic human instinct to hang on to life for as long as possible, to fight to live, but at what cost to those who love you?  Ive seen to many patients fade away in hospital, day after day of their families visiting, looking for signs of hope, unable to accept the inevitable.

Maybe its the greatest gift I can give Martin and my children - that they dont have to watch that happen to me?

 

The clock is now ticking....

....officially.

I had my histology results this morning.  And it was bad news.  Metastatic RCC.

Poor Mr D, I felt so sorry for him.  His face crumpled when he saw I was alone and when he asked where Martin was I knew it was bad news.  He had a look and prod of the lump that has now appeared in my right breast and said that is almost certainly metastatic RCC too.  The only good news is that these soft tissue tumours can be removed, so Im off to see yet another consultant on Wednesday about having this one out.

My poor body, its been mutilated enough recently I thought and was going to refuse any futher ops but Mr D pointed out it would just get bigger - and best to have it out now.

The wheels have been set well and truly in motion now - Prof James and his team will be prescribing me Sutent, probably next week.  That will be interesting.  Will the Police scheme pay for it or will I be chaining myself to the rails outside Downing Street having been refused it by the NHS?

The really annoying part is that in myself Im feeling quite well, better in fact than I have for some time.  Although Sutent isn't chemo as such it does have some very unpleasant side effects and makes you feel like shite.  But the fact that Im 'well' to start with is a really good thing, so Im told !

It feels strange sitting here writing this, I havnt told anyone at all yet.  Martin wont be back till about 6 so Im all alone till the kids get back at 4ish.

As I said...the clock is well and truly ticking now and the only thing I have to beat is the statistics, which make very grim reading,...which I am very determined to do. Ive still got loads of stuff I want to do, and having half a boob isnt going to stop me !

 

Cautiously optimisitc....

Well, I saw Dr M (Scan man) on Friday evening and he did an ultra sound on my liver and pronounced it A Ok !!  Just a couple of small cysts which are nothing to worry about apparently.

The lymph node by my lung is still causing concern though.  Apparently kidney tumours have a very rich blood supply, and the contrast used during a CT scan makes them light up like a light bulb.  And this one did.  Mr D and Dr M are showing my scans etc to Prof Nick (an Onc specialist) to see what he thinks.  Im collecting consultants like some people collect stamps !

Had the 'hump' removed from my back today.  Mr D and I decided to opt for a local anaesthetic - BIG mistake.  It was bigger and deeper than he thought and I had to endure an hour of him digging away to get it out.  Not to be recommended.  He did say it didnt seem to have a rich blood supply so Im hoping this is a good sign.  Its gone off for histology and I will hear in 10 days what exactly it was.

Anyway Im home, and it is really painful - really really painful but Im feeling quite optimistic.  I feel well (apart from the hole in my back now!)

James called a short while ago to say he had arrived in Sydney safely and met up with his mates.  We could tell because we could hear the racous drunken laughter in the background - so he is ok !!  Nice to hear that its cold and raining over there right now...haha

 

 

Bad news....and a bit more bad news !

I went to see Mr D last evening for my results.  I really really hoped I would get a definitive answer but it seems its not to be just yet.

Basically, my bones scan was ok.  No sign of any cancer, just a bit of arthritis in my right hip and left knee !

But my CT was a different story.  It was reported by a different radiologist, usually Dr M (Scan man) does it.  I think he was on holiday this week.  Anyway it was very non commital, but still said enough to worry Mr D and me.  I have an enlarged lymph node (about 4cm which IS big) on my left lung.  Plus 'multiple lesions' on my liver which could, or could not be, cysts or mets.  Very helpful.  Sit on the fence why dont you?

Anyway, Mr D has arranged for Dr M to both do an ultra sound on my liver on Monday afternoon and also review the scans - so we should get some answers then.

Hes also going to operate and remove the lump on my spine, which we are still not sure what it is.  Best thing is to get it off and send it for histology.  This will be on Thursday.  So I have another bumper fun week ahead of me !

How do I feel?......well a bit worried still.  'Multiple lesions' doesnt sound good in anyones book.  Mr D said they could be, and are most likely 'early changes'.....ie early metastatic disease.

Martin and I went for a curry after to chat and settle down before we went home.  And I drank most of a bottle of red wine just to teach my liver a lesson !

 

Fun Day Out...

Oh yes, you can keep your Alton Towers and Drayton Manor - Ive discovered a much more exciting way of spending the day.

9am turn up at hospital, be met by a charming, but VERY camp, young doctor who proceeded to inject me with this nasty stinging stuff (isotope something) and announce 'youre now mildly radio active so dont go holding any small children or babies'

See ?....you dont get that on Apocolypse do you?

The scan followed which wasnt that bad - except he put a cd player on and it was Barbara Striesand !!

Then it was upstairs to drink a litre of vile contrast that tastes like Castrol GT5, another injection that makes you feel like youre weeing yourself, and yet more scans.

Honestly, Im lucky they dont charge me for all this fun and excitement!

Anyway, all done now and results this evening....

 

James

James is off to Oz next week.  For 6 months or even longer.  Im pleased for him really I am.  I encouraged him to go, it really is the best thing for him right now but oh my goodness will I miss him.

I will miss his smelly socks left lying in the living room, his muddy football kit on the kitchen floor, the delightful way he leaves wet towels on the bathroom floor and his pigsty of a bedroom.

But most of all I shall miss the way he comes into my bedroom when Ive had a bad day, plonks himself on the bed, and says 'Fancy a coffee Mum?' and he sits and chats about his night out/work/girl friend problems.

Im trying so hard to quell the little voice inside me thats saying 'this could be the last time you see him'...but its still there.  And I cant let him see that. So I shall stand there waving him off  at the airport with a big smile on my face, and then bawl my eyes out all the way home !

 

Update on the hump...

Saw Mr D the other evening regarding the hump and a few other niggling problems.

He had a bit of a poke and prod at it, was very non commital about what it could be as I expected, then ordered a battery of tests.  A full bone scan.  Spiral CT scan. Full bloods etc.  Seems he doesnt think its innocuous either.  So next Thursday I shall be spending all day in hospital being injected and scanned - oh joy!  At least we should have some answers though.

He did say however that he thought it should be 'whipped out'.  Not sure how I feel about this really, spinal surgery sounds just a wee bit scary.  Martin, ever sensible, said to just wait and see what the results are before getting all worked about it.....

So...more waiting.....

Radio Star....

Oh Yes !

Thats me - a Radio Star!......Well, I took part in a phone in on Radio 5 on Sunday evening at the ungodly hour of 11.30pm.  In the main it was a discussion about the  NHSs refusal to fund certain drugs to cancer patients.  Since I got involved with JWF campagain Ive benn horrified to learn how many patients are dying because of this decision by the NHS and PCTs.

Anyway, I wont rant on about it here !

It went very well, was very well received by the public and we drummed up a lot of support.....

So...onwards and upwards comrades !!

 

The bells the bells.....

Yes I know I know - its been a while since my last entry.

Thats because all has been quiet on the 'Jane health front'.  Not a lot to report really.  Leak finally dried up, back to eating normally, we even had a holiday last month!

But for the past few weeks Ive been feeling weaker, and tireder, and acheyier.  And Ive developed a lump on my spine.  Oh yes, Im growing a hump!  All joking aside its a pretty worrying development.  I know it COULD be something innocuous - but lets face it....what are the chances?

Reported it to Mr D last week and hes ringing tomorrow with a 'plan'.  CT is already booked for Sept 3rd.

Results to follow.....

Saying NO !!

Its something Ive never been very good at. I guess a lot of Mums are like that.

Cook a meal for 12 with an hours notice?.....Sure no problem

Look after little Johnny (spawn of the devil) for a week while you go to Barbados?.....Id love to

Wash the school football teams mud encrusted kit every week?.....Send it my way

Recently however Ive learnt to say 'NO' and its so liberating. It feels vaguely naughty and selfish but so less stressful.
The next move is to start to ask others to do things for me.....I shall grit my teeth and gird my loins and go for it !

CT Scans.

They have to be the worst thing ever invented.  That and waiting for them.  My life seems to revolve around them at the moment.

I know its a month or so till my next CT scan and Im trying to forget about it and get on with stuff, but its always there, nagging at the back of my mind like an itch you cant scratch. They arnt very pleasant things anyway, I found it quite scary and found myself thinking of the numerous times Id taken a patient (when I was nursing) for a CT scan and never given it a second thought. I reassured them and held their hands when appropriate, but the full impact of it didnt really hit me.
Just goes to show you doesnt it? You can be as sympathetic and caring as you possibly could be and yet you cant empathise until youve been there yourself.
As a patient I found a CT scan to be very 'Star Trek'...that horrid drink....the needle in your arm...the big empty room...the whirring of the machine and worst of all that disembodied voice telling you to hold your breath.
The radiology staff are lovely, but obviously they had a job to do and a blubbing patient can hold them up.
Ill be better prepared this time...I hope. At least take some tissues to save the indignity of wiping my nose on my dressing gown sleeve !

Update....

Im back on here due to several kind requests.  I must admit Ive missed writing my blog, it is an outlet for me even if I often sit here with tears dropping on the keyboard.

It IS better now though, I can think and talk about it much more easily now.  I guess thats why its called the 'Cancer Journey'.  Ive been through the full gamot of emotions.  Disbelief and denial at first.  Then anger.  Then a crushing devastation .  Now its a calm acceptance, with a few moments of despair thrown in.  I find I can even joke about it now with close friends.

It sure does make you evaluate your life.  At first there were plenty of 'if onlys' - a feeling that Id wasted so much time.  Now I count my blessings, and there are so many of them.  I actually found myself telling someone recently 'In spite of everything I consider myself very lucky'  The reason for this is I think Im in a pretty priveledged position now.  I know Im time limited so I wring the very last drop out of every experience I have now.  I sit and talk to, and more importantly, listen to the children so much more.  I look at things with a new borns eyes  Everything seems so much sharper and in focus.  I have no fear, for what is there to be afraid of?

 

At last....

......three days in a row I have woken up pain free.  Im almost frightened to mention it in case Im tempting providence, especially after the past week.

I went back to see Mr D last Monday because the pain in my chest wall was becoming unbearable, and pretty scary.  He didnt seem too concerned, but at least reassured me it wasnt anything too sinister.  The rest of the week the pain moved along my scar, Im convinced it was the deep sutures finally disolving.  And now its gone.  Just slight discomfort now.  Which I can ignore quite happily.  Thats the first time in 8 weeks Ive been totally pain free.

Wednesday I went back to see Dr B - life seems to revolve around hospitals and doctors right now.  He examined me and declared me ascites free.  Then said to both Martin and I 'Looks like you may have found a cure'!! So he didnt expect this fat free diet to work really.  Well it seems to have and Im SO relieved.  Im still being really careful what I eat but having the odd low fat thing now.  Hes brought my CT scan foward so he can have a look at the lymph nodes that are left, so it should be in the next couple of weeks.

Yesterday (Easter Sunday) we had a really lovely day. Carol, Trev, David, Sarah and Grace came to lunch, the weather was lovely and I felt almost normal.  No, better than that actually I DID feel normal and we had a lovely relaxing day and a good laugh and even the fact I couldnt eat the meal I cooked didnt put a damper on it.

So, tentatively, and holding my breath, Im walking forwards and NOT looking over my shoulder.  And Im ready for the next thing.

 

If its not one thing.........

.........its another.

Well, Ive been sticking to the cardboard and grass diet rigidly for over a week now and my weight has fluctuated a bit but in general its gone down.  So thats a good sign.  Tummy is soft and not as big either.  Another good sign.  But.....

Theres always a but isnt there?  Ive developed this pain, well searing pain is more the word for it.  Directly over where I had the chest drain and the pain is the same.  I have a horrid feeling Ive either torn something or have a hernia.  Its really bad at night when Im lying down and if I turn over or get up.  Ive had it for a few days now and it isnt getting better so Im going to get an appt with Mr D this week and see what it is.

On a lighter note the family are all well.  Catherine has started her job at the pub with James and seems to be enjoying it, well enjoying the money she gets at least!  She prefers waitressing to pot washing (wouldnt we all?) and is hoping she will get more of that soon.  Edward has started at Kings Norton Golf Club and loves it there...so does Martin !!  Now the weather is nicer and we have lighter evenings I dont think Ill be seeing much of either of them!

 

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.

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.

 

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!

 

 

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.

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!!'