Time for a break....

I made the decision yesterday after several truly awful horrible days. 

Days spent in bed feeling sick, in pain from my split infected fingers and feet, sleeping on and off due to the extreme fatigue, pain in my armpit and back and generally feeling just DREADFUL.

My body was telling me, in no uncertain terms, it needed a break from Sutent.  Ive been taking it for over 4 months and have only had 3 weeks break so far - and at the highest dose of 50mg.  I really wanted to keep taking it until next week and was determined to do so but there comes a time when quality of life is more important.

So I stopped taking it yesterday.  7 weeks non stop is enough.

Ofcourse Im running the risk of my tumours starting to grow again during the next couple of weeks.  But I think this is the right thing to do - I cant spend the next week in bed getting weaker and more ill.

It wasnt an easy decision, I agonised over it for ages, but Im sure it is the right one.  Life, no matter how long or short, is for living, not merely existing.

 

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 !

 

Phew.....

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 !

 

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Urgghh........

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 !

 

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Cruzin.....

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.

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Spain, Italy, France....and back to Spain...

The week is almost over, in more than one way.  After having a wonderful week of being able to eat what I want Sutent's side effects have kicked in big time and Im back to the sore mouth, bloated tummy, no appetite etc....

Never mind, it was wonderful whilst it lasted - and Im still feeling well which is the main thing.  I shall have to negotiate with Dr P to have my weeks break just before we go to Turkey in August (did I mention that?)

Anyway, today is our last day and we are docking in Mahon shortly. 

It was such a relief to see Perce last night at dinner. having had no sign of him for days we were about to post him 'Missing - presumed lost at sea' but it appears he has had his eyes on a certain lady and has been wooing her.  Tsk...men are so fickle arnt they?  He soon dropped us like a red hot stone when some flighty 70 year old took his eye.

Yesterday we spent the morning in Nice - and we didnt need telling where we were, it was obvious.  Stick thin women with mahogany tans and very severe face lifts - yes, it had to be the south of France.  Its a beautiful, but very commercial, town.  A pebble beach which absolutely kills your feet, and lovely but expensive little cafes.  We paid 16E for a couple of cups of coffee and a bottle of water !

And it was SO hot yet again - the little waiter in the cafe said the weather was more like August than June.  We have been incredibly lucky with the weather.  The temperature has been over 34 degrees every day, which suits me down to the ground but Caroline has wilted on several ocassions.  She has also developed prickly heat so her skin now has the texture of a warthogs !  Im slathering cream all over her body regularly and because of the itching last night gave her a Piriton - it seemed to do the trick and certainly knocked her out as she is still asleep !

Tonight there is Jackpot Bingo to finish the week off with.  Much excitement accompanies this as the prize is over 1000 pounds !  Thats not bad is it?  Needless to say we are going to have a couple of goes on that one.  Plus the onboard lottery will be drawn and the main prize for that is a free cruise for two.  This is so much better than the mugs and beach towels they were giving away at the beginning of the week !

So - our last day, I cant believe how quickly the week has flown by.  Its been SO much fun, we have seen and done such a lot and have been looked after fabulously while we did it.  I can see why some people refuse to holiday any other way.  We have made some new friends, Im sure we will be on Maz and Barbs Christmas list now, and visited 6 places in 3 different countries.

I wonder if Martin fancies a week cruising the Nile later this year?.......haha

Keeping our 'end' up.....

Its 9am on Saturday, I think, you lose all track of the days on ship.  And we have just landed/parked/docked - whatever you call it - at La Spezia.  What a beautiful little place it is as well, nestling in the hillside, a really pretty Italian town.

Carol is still in bed, hence my being here.  We had a bit of a rough night, the pain in my armpit kept me awake most of the night and she got up with me at 3am to have coffee and some pain killers, bless her.  This morning it feels much better.  Im hoping its the Sutent kicking in (4 doses so far)  The lump there has definitely grown again (bloody thing)

Generally though Im feeling SO well, really really well.  In fact I have so much more energy than usual - my appetite is great as the waistband of my clothes can testify !  Cruising obviously suits me !

Today we are going SHOPPING.  There is a market in the town (I LOVE markets) and a lot of nice little shops.  Which is good because so far we have spent very little money - Martin will be relieved about that ! - so we intend to put that right today !

Im not sure what Maz and Barbs plans are for today - Im sure they will hunt us down soon to check we are ok.  They are so sweet really, worrying about us 40somethings when they are both well into their 80s.  I can feel another Bingo session coming on - which wouldnt be so bad if we win, the prize for a full house is around 100 quid.

We have also been adopted by one of the waitresses - her name is Bruna and she is from Sao Paulo - I spotted this on her name badge, said 'Obrigarda' to her and that was that - we are as good as related now.  She bustles over to us when we go to the restaurant, gets us the best seats by the window, and fetches our drinks.  Actually, to be fair, the staff are ALL fantastic.  Nothing is too much trouble and they are all so polite.  There are all nationalities employed on here - in fact the crew are holding their own football 'world cup' - Indonisia were thrashed by the UK yesterday 9 - 0 !

There seems to be a bit of rivalry in the cruising business.  When we left port yesterday even there were 3 other cruise ships still in dock.  One German, one Italian and Im not sure about the other one.  Anyway, our Captain came over the tannoy and explained they always played a certain piece of music over the ships loud speakers when departing if other ships were there - and to watch the reaction.

Yes - ofcourse - he played 'The Great Escape' !!

The Germans completely ignored us - even when we waved frantically at them as we passed by.

The Italians were a bit better, they waved but then let the side down by playing 'O Sole Mio' - from the Cornetto advert - which seemed a bit pathetic really compared to our stirring anthem.

So - as far as cruise ships go......UK 2 - Rest of the World 0 .............