Thursday, 31 July 2008

A 'difficult' few weeks.

Dr P. did warn me I was in for a 'difficult' few weeks.  And oh boy was he right.  This is my 7th week on continuous Sutent at the highest dose and the side effects have peaked, I simply cant imagine them getting any worse.

Im having to type very slowly, using my nails, because my fingers are all split and sore and infected.  My feet, who have behaved themselves until now, have decided they want a piece of the action so now the balls of my feet are incredibly sore.  I can walk, but not very far and only by waddling along putting most of the pressure on my heels.  I look like a penguin !

I can eat, but just a small amount at a time.  Any more and I feel sick and end up rushing to the loo very regularly.  The one thing I seem to have conquered though is the dreadful indgestion I was getting.  Whilst we were on the cruise Caroline told me to try decaff coffee and caffeine free coke.  The improvement has been amazing, I hardly ever get any indigestion now I steer well clear of caffeine - its in chocolate too which is a bit of a bummer.

The exhaustion is still a major problem and thats now exacerbated by the fact Im having trouble sleeping at night.  I often wake in the early hours in discomfort, I wouldnt really call it pain, and have trouble getting back to sleep again.  So Im permanently tired and find myself nodding off at the most inconvinient moments.

Every single hair on my body is now platiunum blonde (ok - its white), my arms, legs eyebrows and eyelashes and all the fine hairs on my face.  Im turning into a Yeti !

Reading the above paragraphs it sounds like Im ready to be shipped off to the knackers yard !  But for some reason my body is coping amazingly well,  My blood results are almost normal and no cause for concern at all.  Ive lost a little weight, but not much and I still look well.

The best news of all is that my tumours still appear to be stable, buying me more valuable time.

Ive made a start on the childrens memory boxes.  Ive bought a lovely photo album and am sorting out all the old family pics from years ago.  Pictures of my parents, grand parents, grand grand parents and I even have one of my great-great-great grand father.  He looks like Captain Birdseye !

The letters Im going to write them will be the hardest part I think.  I need time alone to do this, away from everyone.  So next Tuesday Im going down to Brighton for a few days to see my brother Jon and make a start on the letters.  With a bit of luck the weather will be nice and I can sit on the beach at the same time and top up my tan !

Thats as long as I dont fall asleep on the train on the way down and miss my stop ofcourse !


Thursday, 17 July 2008


I must admit I was starting to worry.  Ive been feeling so poorly for the past week I was starting to wonder if it really was just due to the side effects of Sutent or something more insiduous happening.

So it was with a great deal of trepidation that I turned up at Dr Ps clinic yesterday morning - to find it virtually empty !  What had happened to all the 'testicles'?  Had they all gone on holiday together and forgotten to invite me?  I felt very left out to be honest - I really thought I had been accepted as part of their club by now.

Now Ive been feeling my 'lumps' regularly over the past 4 weeks, two or three times a day at least, and was fairly convinced that they had, at least, not grown in size. But to have it confirmed by Dr P they were actually shrinking, in fact he said all 3 were "much smaller" was the best news ever.  The two under my arm pit are finally responding to Sutent as well !

I explained about our holiday next month and how Id like to carry on taking Sutent until mid August and then have a weeks break.  He agreed to this but wondered if I should have a lower dose due to the severity of my side effects this month.

No way.  There is NO chance Im risking lowering the dose now that I know its working.  Im just going to grit my teeth and get on with it.  It was such a huge psychological boost to hear those tumours are finally shrinking and almost instantly I felt better.  And so determined.

Treatment with Sutent is such a moveable feast anyway - its all about the balance of quantity and quality of life and every patient is different ofcourse.  There are still trials going on in the US comparing the advantages of taking Sutent with the normal 2 weeks break and taking it continuously.

So for me the regeime will be to take it continuously - but have a weeks break either when I want one, or need one if the side effects become really bad.

It was so nice to hear from 2 other Sutent patients - one who is on cycle 8 and the other on cycle 21 which apparently is a record !  I feel quite an amateur compared to them !

All in all very good news then - my tumours are shrinking, Ive beaten the statistics and now I have a record to aim at - and knowing how stubborn and determined I can be it must be worth an each way bet on me reaching it !


Monday, 7 July 2008


Its been a pretty rapid decline from the highs of last week, in fact I cant believe its only a week since we returned.

Since then Ive had a chest infection, which is at last starting to clear up with the help of some heavy duty anti biotics, plus the side effects of Sutent have really kicked it.

These side effects are cumulative, so each month they appear earlier and get worse.  My hands and fingers are so sore, having little blisters and sores all over them, especially on the tips of my fingers.  Constant application of Udder Cream doesnt seem to help, and nether does constantly having my hands in washing up water Ive found !

I cant eat much.  Im getting awful indigestion and reflux from anything other than very very bland food such as milk, yoghurts and rice.  I feel bloated and sick all the time and the acid that fills my stomach makes its way down and out and leaves me with a very sore bottom !

Im in week 3 of cycle 3 and the fatigue is getting worse too - a couple of weeks ago I was charging all over Europe (ok - not exactly charging !) and now Im exhausted after hanging the washing out.  I know this will get worse and next week I will spend mostly asleep.

Now Im due to have a break from Sutent the week after next but Im going to negotiate with Dr P. to change this.  As I was so well on the cruise, and that was week 1 of taking Sutent, I want to take it continuously and have my weeks break starting 11th August.  Which means that week 1 will be 18th August.  Which is the date we go to Turkey !  I know it will be a rough couple of extra weeks but it will be so worth it if Im as well as I was on the cruise.

I need to feel as well as possible for our holiday in Turkey because we are going on a Gulet (Turkish sailing boat) for a week - all 5 of us.  The whole family for the first time in years together.  This is something Martin has wanted to do for a while now and hes getting very excited about it !

Inspite ofall the horrid side effects the important question is whether Sutent is working ofcourse.

And yes - I truly believe it is.  Even on the tumours under my armpit this time.  The pain I was getting there during my weeks break went within 4 days of taking it again and they both have definitely shrunk.  Definitely.  As has the one on my head.

So all in all this is good news - Im seeing Dr P next week and hopefully he will confirm this, after all he has the last word on the matter !

In the meantime its banana milkshake for breakfast and a bowl of rice for dinner - a bit of a come down after the wonderful food I was eating on the ship - but thats fine, I have all that lovely Turkish food to look forward to soon !


Friday, 4 July 2008


Needless to say we didnt win the Bingo - which was a good job as it turns out.  A chap won it, and you should have seen the reaction of the old die hard bingo ladies - they were fuming !  The last evening was fairly lively with the crew all joining in the fun and games - the waiters 'samba-ing' round the restaurant being one of the highlights.  We ducked out of the excitement fairly early and retired to our Poop deck to watch the sun going down as we sailed back to Palma.  We were both pretty tired anyway after a busy day shopping in Mahon - what a pretty town it is.  The above photo was taken in one of its lovely little squares.

So our week was over - and what a fabulous week it was in so many ways.  Mainly because I was so well.  That soon changed as soon as I got home.  Sutent's side effects kicked in and once more I cant eat much, my hands and feet are sore and to top it off Ive got a chest infection !

I was rattling and wheezing so much yesterday Martin called our GP who came round to see me - fearing I had pneumonia - but its just bronchitis and some anti biotics will soon sort that out.