Shake, rattle.....and rattle a bit more...

Day 17

After behaving itself for 3 weeks my blood pressure decided it wanted a piece of the action and promptly shot up.  Not dramatically - but enough to warrant me being prescribed anti hypertensives.  So thats yet another pill to take every day.  Its not uncommon for this to happen on Sutent and you have your BP monitored very regularly.

My other side effects have stepped up a gear too - especially the sore mouth/tongue and nausea.  I find it quite difficult to eat anything other than very soft sloppy 'baby' food.

But on the whole these side effects are still tolerable and nothing compared to the severity of the ones I suffered on IL2.

In fact, Ive even discovered a new one (trust me!) - lime green wee !  Theres nothing wrong with it, its just lime green in colour!

Makes a change from bright green poo I guess !

Aside from all these fascinating bodily functions my lumps are continuing to shrink - yes they definitely are, its not just wishful thinking, I get Martin to run his hand over them every day !  So even when Im feeling really grotty this is what Im focussing on.

Actually what Im really focussing on right now is sorting out my bikinis ready for Wednesday - and writing list after list of instructions for the kids !  Im not really worried about leaving them (well maybe a little bit), Im filling up the fridge and freezer for them so I know they wont starve and Ive pointed out the white box in the corner of the kitchen which washes clothes.

They will be fine.  I just hope the cats survive the experience !

 

Sutent Day 11

Day 11 - and still no sign of any serious side effects.  Bit of a sore mouth, bit queasy at times, funny 'metallic' taste in my mouth, but nothing really bad.  Had my BP checked again on Friday and its actually come down.

And.......I dont know whether I dare write this - it feels like tempting providence - BUT... the lump next to my nose has almost disappeared!  Its tiny now, you can hardly feel it and the little thread veins that were 'feeding' it have faded altogether.  Remember I spoke about kidney cancer tumours having a rich blood supply and that being one way they are diagnosed?

The lump on my scalp feels slightly smaller and 'squashier' and the one under my armpit definitely isnt any bigger.  And that one was growing alarmingly !

Soooooooo......cautiously optimistic (VERY cautiously !)

Sutent (or to use its proper name Sunitinib) works by preventing the activity of proteins that are involved in the growth and spread of certain types of cancer cells.  It works on approx. 40% of patients who take it (although I have read reports that say as high as 65%) and when it does work, it works really well, either by stabilising the disease or even shrinking tumours.

But it isnt a cure.  The side effects can be extemely debilitating, especially over time with successive cycles, and some serious enough to warrant lowering the dose or even discontinuing the drug.

But Im running ahead of myself as usual - Im only on day 11 and have a long way to go !

10 days till our holiday and I really cant wait.  The days of 'IL2 Rhino skin' which meant generous applications of very thick moisturiser several times a day have resulted in lovely soft skin all over - and FINALLY my hair has stopped falling out in handfuls - so I can now look at myself in the mirror without scaring myself !

Family life goes on ofcourse, intertwined in all this.  With the lighter evenings Martin and Edward reimmerse themselves in their passion for golf.  Catherine, being 17 now, has a busy social life and James is either working, out with his friends or seeing Grace.

At times I feel almost redundant - except meal times !

Actually this is all pretty comforting.   Whatever happens now I can look at my family with a fierce pride in the knowledge I had a small hand in that.

 

Sutent Day 6

I took the first capsule on Thursday evening.  And then sat there, waiting for something to happen.  Im not sure what I was expecting but something fairly dramatic.  Ofcourse nothing did and I went to sleep and woke up feeling fine the next morning.

Day 5 and I woke up with a sore mouth and feeling very queasy, just like morning sickness.  And absolutely no appetite.  I feel 'full' all the time, as if Ive just eaten.  But generally I dont feel too bad.  I went and had my BP checked by our practice nurse, Jean, too - it was a bit high but nothing to worry about yet.

So - so far so good although I know the worst is yet to come.  The side effects are worse in the 4th week apparently - just when we are on holiday !  Great !

Please dont think Im moaning - honestly Im not.  I really appreciate the fact I have been given this drug, there are a lot of people out there who have been denied it. 

Nurse Martin is at his attentive best,  peering at me all the time and asking 'do you feel ok?' as if he is expecting my arm to drop off or something.  I do look a bit pale and washed out right now, but thats nothing that a touch of blusher and a week in the sun wont sort out !

I cant resist checking my lumps every day to see if there is any sign of them shrinking - ofcourse I know this is a mistake, its like weighing yourself every day when your on a diet.  Even if there are subtle changes I wont notice yet.  None of them are any bigger so Im taking that as a good sign, it helps me stay positive.

And the latest update on 'HairWatch' is that it is STILL coming out in handfuls !

 

Sutent

Tuesday afternoon and Dr P called.  He had the results of my CT scan and wanted to see me on Thursday (today) after his clinic.  So I guess its not good news then?

For the first time ever we didnt have to wait.  Dr P called us straight into his consulting room.  And I was right, it wasnt good news.

The scan shows that not only do I have the lesions I was aware of, on my scalp, face and two in my armpit, but I also have lesions on my lung, liver, lymph nodes and right hip.  Not very big ones, apart from the one in my armpit, but none the less they are there.

It didnt really come as a surprise to either Martin or I.  The way the lump in my armpit has grown over a few days was a good indicator.

Dr P explained we couldnt really wait any longer.  Even a matter of a few weeks whilst I have the operation on my face and scalp was too long.

It was time for me to start taking Sutent.

Today.

He explained how it worked, the side effects and the drugs I could take to counter them, and then wrote the prescription.  Just like that.  I will have 2 cycles (6 weeks each) and then be scanned again to see if its working.

One months supply, in a small brown bottle, costs £3,600.

Thats £128.50 each small orangey capsule.

But to me they are priceless......

 

Just the two of us.....

 

Monday -  and yet another CT scan.  Only this time, despite the numerous ones Ive had before, I was really nervous.  Martin had a meeting so couldnt come with me so Catherine tagged along - hoping to see some young hunky doctors no doubt.

I was sitting in the waiting room drinking yet another litre of Castrol GTX when Dr M walked past - stopped - looked at me and said "Oh hello Jane - I didnt recognise you without your twin!"

He meant Martin ofcourse.  This really brought into focus what tremendous support Ive had from him over the past 14 months.  Hes always been there - throughout every operation/procedure/treatment/consultation Ive had.  Quietly supportive, taking his lead from me, joking when I do, quiet when I am.  How incredibly lucky I am and I must never ever take this for granted. 

Serious illnesses can sometimes drive a couple apart.  The stress and strain of what they are both going through is at times too much for a relationship to bear.  It seems to have brought Martin and I closer - no, it HAS brought us closer.  We are definitely stronger as a couple, more caring and considerate of each other.  I guess that shows what love really is after 26 years of marriage.

All I know is I would never have got as far as this without him.  I would have withered without his quiet strength, his gentle encouragement....... and his awful jokes !

 

 

 

 

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Yesterday

Yesterday everything seemed sorted, planned.  I had seen Mr Peart and he was going to remove my lumps on 17th April.

Yesterday I was still upbeat and positive - happy the ways things were progressing and confident Sutent would work for me.

Yesterday I caught sight of something that for the first time ever filled me with despair.

Under my right arm pit a new lump has appeared.  And its big, the size of a golf ball.  It wasnt there a few days ago so it has grown very rapidly indeed.  Its above the one next to my boob (which has also grown but not quite so dramatically) and is visible from the outside, not just on palpation.

This will change everything.  I doubt I have the time to wait until after the operation to start Sutent, let alone till after our holiday.

Im having a CT scan on Monday and will see Dr P on Thursday for the results - and to show him my new lump.  Im pretty certain it will mean starting Sutent immediately - but have we left it too late?  Is my disease now so aggressive its rampaging out of control ?  Ofcourse a lot will depend on the CT results too - its the tumours you CANT see that are most dangerous.

I must admit this has me worried sick.  I know the score.  I know once cancer turns so aggressive and is either untreated/untreatable the situation can deteriorate very rapidly.  It could be a matter of months - or even weeks.

I havnt got time to die now.  Ive got too much to do.  Im only just starting to feel fit and well after IL2 and Im bloody determined to go on holiday later this month.  I feel so frustrated by this.  Ive done everything that was asked of me, been the most compliant of patients, suffered the horrible treatments, the pain and discomfort and it now appears it may have been for nothing.

So now I have a few anxious days ahead before I find out exactly what is going on and how serious this new development really is.  Im trying to be positive but I really fear the worst.

AND my hair is still falling out !

 

 

Bumps and Boob jobs....

So, yesterday I went to see Mr Levick, cosmetic surgeon, at the Priory.  I must admit it was nice to be back there, it smells of coffee and expensive after shave instead of formaldehyde and wee.

I was shown into the waiting room and sat down with about 5 pretty young women who had one very noticeable thing in common.  Very small tits.  VERY small. You didnt need to be a rocket scientist to work out why they were there.  Oh boy this made a change from the 'testicles' I am used to.  I was so glad I had worn a low cut T shirt and puffed out my chest to good effect.

Anyway I was called in to see him and the first thing he said was "I gather you have 2 canerous lumps that need removing - well Im sorry I cant do them"  Which kind of took the wind out of my sails.

He went on to explain that as a cosmetic surgeon his main work was boob jobs (as if I hadnt guessed) and face lifts.  To remove any kind of cancer you have to be 'acredited' and few cosmetic surgeons are.

Great.

It seems money talks and the demand for breast enhancement and nose jobs is such that they dont need to do any other kind of work.  Which is a pity as he seems a really lovely bloke - I base this purely on the fact he said "I cant do anything for you Im afraid, I can see you are not in need of any kind of breast enlargement" !!

(Thank goodness for Wonderbra !)

Anyway, he passed me on to his secretary Gail, who like Zena (Mr Ds sec) was scarily efficient and knowledgable and soon sorted me out with an appointment to see a Mr Peart who DOES remove cancers.

God bless these secretaries - they really know their jobs and are the Consultants right hand man (woman)

So Im seeing Mr Peart tomorrow morning and hopefully he will whip these lumps out pretty soon.  I have to wait 2 weeks after surgery before starting Sutent so the sooner the better really.

All things considered Im still feeling well.  And with a lot more energy.  Martin took me out on a 'forced march' in the country on Saturday, and despite a bit of shortness of breath I felt fine.  I shall take my stitches out on Friday (or get Nurse Martin to - Im sure he would be terribly disappointed if I didnt ask him)  and then I can go swimming at last.