Extraordinary Rendition to Manchester.....

...........thats what a friend of mine called it.  I found it very amusing and very appropriate as thats exactly what it feels like !

Ive been up there so many times now surely I qualify as an unofficial member of Oasis?

Poor Manchester will never get a good press from me Im afraid - all it conjours up is memories of dreadful days and sleepless nights.

Prof H is allowing me to set the pace for the next week.  We have tried both 8 hour and 12 gaps between treatments and to be honest Id rather just have it banged in as often as possible before I lose my nerve and start whining to go home.  This way I should manage to get a fair few in and hopefully be allowed home about Thursday.  4 days isnt so bad for me psycologically - I suffer from awful home sickness and this combined with the nasty side effects means I lose my determination by then.  Research has shown that its not the timing of the doses that counts - but the overall number, so Im hoping for another 5 or 6 which will be really good.

Ive had a nice couple of weeks rest but to be honest Im only just starting to feel 'normal' again.  It seems to take me a good 2-3 weeks to recover and even now Im still plagued by the itching.  My skin has the weird texture of a Rhinos bum which isnt attractive so Im hoping that will resovle itself soon !

The kids seem to have inherited my quirky sense of humour and have bought me a single chicken fillet - which I will definitely need when most of the rest of my right boob is removed soon.

Martin said a rolled up pair of socks would do the job just as well - Men huh?

Take care everyone and Ill see you soon God willing....

 

 

 

 

 

 

 

 

Fight for Life.....

Why are cancer patients STILL being refused treatment on the NHS because of the stupid post code lottery that seems to exist?

Adrian Cure, a kidney cancer patient who lives in the Warwickshire PCT area, has been refused Sutent as he is deemed not to be an 'exceptional case'.

How can this be?

How can you be an exceptional case in one PCT but not in another?

How can the NHS justify spending millions of pounds on funding tattoo removals and yet deny a cancer patient the only drug that can extend their life?

Its sheer madness and SO unfair.  I had my application for Sutent approved within less than 4 weeks.  No hassle, no questions.  But I live within South Birmingham PCT which is part of the Pan Birmingham Cancer Network - and they have recently announced that as from 1st April 2008 Sutent and Nexavar will be routinely prescribed and funded as treatment for advanced kidney cancer.

Adrian lives a few miles from me and has been denied it.  If he lived in Mexico or Argentina he would receive it as a matter of course.

This makes me so angry - what is the point in developing these new drugs if the NHS then refuse to fund them?

I appreciate the NHS have only a finite amount of money and decisions have to be made to spend it wisely ,but this grossly unfair situation has to change - and change soon.

Please take a moment to visit the site below and sign the petition on behalf of all the kidney cancer patients who have, and will be, denied the only drug that can extend their lives.

Thank you

Jane

 

Petition to: acknowledge that Cancer is a disease of our times - Why is the governement failing to step up to this challenge?.

 

No rest....

Yesterday I was back at the QE with all the testicles.  No women yet again.  And the clinic was running 2 hours late.  I dont really mind waiting, I know how busy Dr P's clinics are, but sitting there with 20 men - all of them staring at me and wondering - gets a bit wearing after a while.  Especially when Im still feeling and looking so rough.

Anyway, I got to see the man himself eventually.  He did apologise for the long wait and explained he had 30 patients to see between 9 and 12.  No wonder he was so behind, he is so dedicated he never refuses anyone an immediate appointment if they really need one.

We had a little chat about IL2 and then I told him about the lump under my right arm.  He had a feel and said 'You have 2 lumps actually - and one is a lymph node'  Which is NOT good.  In fact its quite bad.  Actually its very bad !

The 3 of us (Martin was there too) sat there in silence for a while.  Then Dr P came out with his plan. I have 2 choices basically.  I can go onto Sutent and hope it's effective and buys me some time.  Or I can continue to fight.  I chose to fight.  So this is the plan now.  Its quite drastic, but at this stage it needs to be. 

Im going back into Christies next week (25th) for a 'booster' cycle of IL2.  Just 3 days to have as much as my body can take.

Then when I have recovered from that, about 2 weeks later, I shall have a couple of operations to remove all the lumps.  Mr F (the boob man) will do 2 of them and a plastic surgeon (not sure who yet) will do the ones on my face and head.

By the time I have recovered from the surgery I will be due for cycle 3 of IL2 -roughly the end of March.

The idea is to keep up the pressure with IL2 on the viscerous tumours and at the same time remove the skin lesions and lymph node to reduce my overall tumour volume.

Its quite daunting and quite scary to be honest - but if Im going to fight this I have to do it 100% - and quickly.

I just hope my body can take it, its been through such a lot in the past year.  I still feel strong and more determined than ever to fight this bloody disease.  As far as Im concerned Im still going for a 'full durable response' and nothing less will do.  Im not ready to go down the 'buying time with Sutent' route yet. 

Not yet.

And yesterday was Catherines 17th birthday.  So we went home and I cooked her favourite dinner - because life has to go on.

 

I dont believe it !!

Nope - I havnt turned into Victor Meldrew - Ive found another lump.

Under my right arm pit, just along from the scar where I had 5 removed from my boob.  I am utterly, utterly pissed off to be honest.  Thats 3 lumps I need removing now - one on my head, one next to my nose and now one in my armpit.  There wont be much left of me soon !

It seems so strange that IL2 is working so well on my visceral tumours but is uneffective against these skin lesions.  Prof H did warn me this was the case.  But its still depressing when they keep popping up so frequently.

Generally Im feeling much better, apart from the itching ofcourse !  Im seeing Dr P on Thursday so hopefully he will arrange for these lumps to be removed, before my next cycle of IL2.  Psychologically I think its important.  And the smaller tumour volume I have the better for my general health.

The family are now taking bets on where the next lump will appear !!

 

 

Manchester xxxx Manchester

Well Im back home again after another yukky week up in Manchester.  I know its not Manchesters fault but Im really starting to hate that city!  It was more or less the same as the second week of my first cycle - lots of vomiting, rigors, fainting and seeing things - this time I was convinced there was someone living in my bathroom !  The nurses are used to me and my hallucinations by now bless them, and they just smile and shove some more gabapentin down my throat !

Adam, the nice resident doctor on the Chemo ward, popped in for a chat while I was sane and concious.  He started talking about 'durable response times' - the word 'cure' is still rarely used it seems.  He was basically cautioning me not to get too carried away, just because Id had a response to IL2 didnt mean it would be full and 'durable'.  In other words Jane, youre still living under the Sword of Damacles and probably will be for a very long time.  Which is fair enough - at least I am living !

At Christies they have a group of ladies called 'Looking good - Feeling good'  They come round the wards and give you a make over - hair and make up and a bit of aromatherapy - which sounds lovely but when your lying flat on your back, vomiting and shaking, it would take more than a hint of pale pink lip gloss and some blusher to make me feel better.  So I had to decline it when offered.  Which is a shame because I could really do with it now.  Im a lovely pasty ashen yellow colour, face peeling again and dark sunken eyes.  They could rename it for me - 'Looking good - Feeling awful' !

Even though Im feeling so dreadful right now I know that in a few weeks Ill be feeling better.  I know this is only temporary - and that really helps.  Ive been down this road before and horrid though it is, there is an ending in sight.  I know I have a good 6 weeks before my next CT scan and (probable) next cycle of IL2 and I intend to make the most of it.  Unfortunately Im a bit limited by the hickman line dangling out of the top of my left boob, but Im even getting used to that now.  It doesnt hurt and I can tuck it into my bra so it doesnt get into the way.  Martin is still very wary of it - Im sure he thinks if he accidentally pulls it I will deflate like a blow up doll !

As you can see Im up at 'stupid o'clock' again - its the itching.  I wake and its like I have an army of ants crawling all over me.  I can either lie in bed tossing and turning and disturbing Martin or I can get up, have a drink and wait for it to settle a bit.  Which it always does eventually.  And being a lady of leisure I can catch up on my sleep during the day.  There is something delightfully naughty about going to bed for a snooze in the afternoon - I simply love it !

Its half term next week (groan) and a positive plethora of birthdays in this family.  Catherines on Valentines day - James' on 20th and on the 18th its Martins 50th !!  I really cant believe he is going to be 50 - he is fitter and healthier than most men half his age.  Which is a good job really as I seem to be coming apart at the seams !

 

 

A year on....

Its been just over a year since I was diagnosed.  Almost a year since my initial operation.  In some ways it seems much longer, so much has happened.

I went to see Dr P yesterday for my bloods and a check up.  I saw Sarah his registrar again.  The first thing she noticed was that the lump next to my nose has grown.  Then I pointed out to her that the horn on my head has returned.  This is such a blow right now, apparently IL2 doesnt work well on skin lesions so although its killing the tumours inside me I still have a couple which will need to be dealt with soon, probably by surgery.  Sarah also mentioned starting Sutent and my heart sank.  I really really hoped I wouldnt need it.  It seems like a failure now after all Ive been through on IL2 to have to contemplate this drug after.  As Sarah pointed out the skin lesions wont kill me and can be removed by surgery but it didnt make me feel any better.  They will be taking me away bit by bit.

Im tired.  Tired of fighting to be honest.  How much longer do I have to keep doing this?  How many more operations will I need?  Its physically and emotionally exhausting.  Staying positive is hard work in itself at times.  For the first time I can understand how people can give up, turn their faces to the wall and accept their fate.

But Im not ready to give up yet, especially after all Ive been through so far.  Im back into Christies on Monday to hopefully kill off the last little bits of the tumours on my lymph nodes.  And then when Ive recovered we shall see about having these lumps removed.

 

Lumps and bumps....

We arrived at Christies a little late on Monday morning due to the awful weather.  Torrential rain, flooding everywhere, and we were stuck in a queue on the M6 for over an hour.  Not that I minded much - it was delaying the inevitable for a little while.

Twice they attempted to insert a PIC line into my left arm - and twice failed.  Which left us with a little problem as my right arms veins are still out of action.  There was no other choice but to go for a Hickman line on the left side of my chest.  This is a pretty unpleasant procedure.  The line goes into your neck then comes out of your chest in a sort of a loop.  There is a lot of pulling and pushing, all guided by ultra sound but fortunately no real pain, just discomfort.  Anyway eventually it was in, and working, and I was left with a length of white tubing coming out of the top of my left boob.  So it was back up to the ward to await my first dose of IL2.

Martin went home before all this was completed.  The weather was getting worse and the last thing either of us needed was him stuck in traffic for hours.

I dont do well on my own.  Without the support of family and friends I shrink and turn inwards.  Lovely as the nursing staff are they cant replace the presence of your family and comfort of your home surroundings.  Human relationships are the most important thing we have - without them we are nothing, this is something I have come to appreciate so much over the past year.  The strength you have as a person is very much dependant on that which you derive from those around you.  So again, I felt very lonely.  And alone.

Prof H popped in with a big beaming smile, which is unusual for him.  He pronounced himself very pleased with my results and very optimistic for a complete response this time.  So that gave me a huge boost.

And so it started.  And I have to admit that it wasnt so bad this time.  The side effects were all there ofcourse but this time I seemed to romp through the first 4 doses really quickly.  Then came the usual problems with my temp and blood pressure.  One far to high, the other way too low and it took 12 hours before I could have dose 5.  By this time I had galloping IL2 diarrohea and the constant leaping in and out of bed doesnt help your BP to settle.  So it didnt.  16 hours later it was still way too low for me to have another dose.  By this time it was Friday, doesnt time fly when you are having fun, and it was decided to call it a day.  5 doses this time - not bad but not brilliant.  I just hope its enough.

Martin arrived at lunch time to take me home, things went very smoothly and I was tucked up in my own bed by 3pm.  And thats when it really started to take effect.

Late Friday evening I noticed the left hand side of my face was very swollen.  Not just 'IL2 bloated' but hard with little lumps under the skin surface.  Then it moved around to the right hand side.  I took some Piriton as I was convinced it was some kind of allergic reaction and went to sleep.  And woke up at 3am literally covered in these hard itchy lumps.  All over my back, under my arms, in my hair line.  And I felt like my skin was on fire.  I paniced slightly them calmed down as I realised it had to be some kind of allergy similar to the 'itchy skin' I had previously.  I took more Piriton but sleep was impossible so I paced the floor for a few hours rather than tossing and turning in bed and disturbing Martin.

The lumps eventually went away but kept popping up in other places all day on Saturday but I think the Piriton was starting to have some effect as it wasnt as bad.  In the meantime I still had diarrohea and was being sick - so it was a pretty miserable time all round.  Sunday I felt a little better and finally managed to sleep - almost all day - which was so nice.

Today, Monday, Ive woken feeling much brighter.  My skin still feels 'weird' - sore and itchy and very sensitive, but at least no lumps today.  My face has started to peel again so I look like an extra from The Mummy - but Im starting to recover, slowly.  I may even try eating today, which will be a novelty.  Im living on a veritable cocktail of drugs right now to control the itching, diarrohea, pain, sickness.  If you held me upside down by my ankles and shook me I would rattle !

So all in all its been another horrid episode - on Saturday I was swearing I would never, ever have any more IL2.  Today Ive resigned myself to the fact Im going back in next Monday.  And hopefully by the weekend Ill be determined to give it my best shot again.  This is a war that still has to be won.