Memories........

Edward and Catherine                                                                    James

 

Its almost 17 months since I was diagnosed.  I dont usually take a lot of notice of statistics, especially when they are depressing, but this is one time Im happy to say Im beating them - well and truly.  I really shouldnt be here.

I try not to dwell on that fact too often, but yesterday I was watching the news of yet another KC patient fighting for funding for Sutent and it was stated that without treatment a patient with mRcc (advanced kidney cancer) has only a few months to live.  Ofcourse I knew this, but to have it publically announced was a bit of a shock.

For a while now I have been thinking about making 'Memory Boxes' for the children and Im going to make a start on them this week.  Ofcourse being in their teens, and older, they will have well established memories of me anyway, so these will consist of stories of when they were born, when they were babies.  Photos and the odd bits and pieces Ive kept over the years - the silly things that we Mums collect, cards and letters for future birthdays/special days, and little gifts.

Ive put off doing this until now because I find it incredibly upsetting just to think about it, but this is such a wonderful opportunity, Im so lucky to have it and I really must make the most of it.

How many parents get the chance to actually sit down and write to their children and tell them how much they love them, to describe the day that they were born and how special they are each in their own way?

At the end of the day memories are all we leave behind but they can help to shape the future and its important they should be positive, happy ones. 

So today I shall make a start, knowing full well Ill be crying buckets whilst I do it - but hoping Im creating some smiles for the future.

 

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Rip Van Sprite

I seem to spend an inordinate amount of time asleep.  Or dozing.  I get a good 8 hours at night but then in the afternoon I find myself totally exhausted, my body just shuts down and I have to go to bed - for another 3 or 4 hours sleep !

Fatigue is a common side effect but it appears to be hitting me pretty hard right now.  I dont feel ill, just incredibly, indescribably tired.  Its not really a problem, Im lucky enough to be in the position whereby I can just take to my bed when I need to, it just seems such a waste of time.  And time is so precious to me right now.

Day 12 and the side effects are still pretty minimal, apart from the 'sleeping sickness' !

Whats really important though is that my lumps are definitely still shrinking, very noticably.  The one next to my nose is gone completely.  All the others are much smaller and I have no pain in my arm pit at all.  So all the signs are fantastic, better than I could have hoped for.

The 'platinum blonde' look is coming on well too - all my body hair including eye lashes and eyebrows are now blonde and my hair has a good inch of new bright blonde growth.  I shall have to do something about that actually as it makes me look like a badger !

 

Three days.....

......... thats all it took.  Just 3 doses of Sutent and my tumours started shrinking noticably again - and the pain in my armpit disappeared.

I feel incredibly encouraged by this - just 3 capsules and it appears my cancer is yet again under control.  How fantastic is this drug?  Which makes it all the more disgusting that the NHS are STILL refusing to fund it for some patients here in the UK.

So I may have to take it continuously - its a price Im more than prepared to pay.  And the side effects fade into insignificance compared to the positive benefits Im gaining.

All I need now is for my PCT to pull their fingers out later this month and affirm my re-approval for funding.  I just hope they dont take too long, Dr P cant re-apply for me until he has the results of my CT scan, due on the 19th June, and my present course of Sutent will finish on 17th.  Im panicing slightly at the thought of being off the drug for too long. 

My original approval was given in less than 4 weeks, one of the fastest ever known, so Im hoping the PCT will process it even quicker this time.  Ideally I want to be taking Sutent again by the time I go on holiday.

Talking of our holiday there has been a slight change in plan.  Well, a big change actually.  We are now going on a cruise !  24th June we fly to Palma, join the ship, and sail round the Med for a week stopping off at various ports along the way.  Im SO excited - Ive never been on a cruise before, Ive always wanted to but it has never appealed to Martin.  Carol and I have all these wonderful, silly, childish plans, like lounging on the poop deck pretending we are in an Agatha Christie novel !

The ship stops at Sardinia, Rome and Nice - all places I have never been, but always wanted to - amongst others.  Im determined to see as much as I possibly can, even if it means falling asleep next to the Trevi Fountain due to exhaustion !

There are 3 restaurants on the ship, one of them open 24 hours - Martin said he is going to weigh us before we leave and again when we get home.......

I think I know what the results will be !

 

A picture of health....

.........is how Dr P described me as I bounced into his room yesterday morning.  And its true.  I do look a picture of health.  I have a lovely tan and havnt lost any weight yet, my eyes are sparkling and I feel well.

So it came as a bit of a surprise to both of us when he announced after examining me that the tumours under my arm had definitely grown.  I explained what had happened, the fact that while taking Sutent they all shrunk, but the moment I stopped they seemed to start growing again, and became painful.

So it seems that whilst Sutent is in fact working (hurrah!) the aggressive nature of my cancer now means that during the 2 week break the tumours start growing again.  The tiny thread veins next to my nose have reappeared again too, although the lump there is still minute.

There are two options to try and prevent this happening - one is to have radiation on my axilla (a nasty and not very sucessful treatment) the other is to take Sutent continuously, without a 2 week break between cycles.  That doesnt sound like a bunch of fun either !

Anyway, the upshot is, I started Sutent again yesterday and will have a scan in 3 weeks.  Hopefully at that stage it will show stability in my disease as Dr P has to apply for further funding for me.  The original approval was for 2 cycles, then the effectivness has to be assessed before further cycles can be approved.  Then he will also decide if Im to take it continuously, or have radiation.  That should put an end to my looking so healthy!......ha ha !

To counteract that Ive decided its imperative I retain my lovely tan and have booked a holiday for myself and my friend Carol to go to Cyprus next month - well thats my excuse and Im  sticking to it !

Its her 50th birthday in November and I cant possibly think that far ahead so we have decided to celebrate it early - lying in the sunshine and being waited on hand and foot !  On a more serious note though, it will be lovely for us to spend some time together whilst Im still well, we have been friends for so long now and we deserve this time.  This is one of the positive aspects of knowing you arnt going to be around for very much longer - you can make really good use of the time - be with the people you love - make happy memories for everyone. 

And yes - spoil yourself a little - why not?.......

 

Mary........

Mary is my MacMillan clinical nurse specialist in palliative care.  Thats quite a mouthful isnt it?  Basically it means she is my named nurse and first point of contact as far as treatment problems or concerns, especially in relation to pain relief.  But she is also there for the family, to provide support and answer any questions they have.  Which is nice to know because Im sure Martin has a lot of questions he doesnt want to ask me, but would be willing to discuss with her.

The first thing she said was that considering all I have been through in the past 16 months I look incredibly well - which is true - and has been commented on by many people.  Apart from when I was going through IL2, when I looked truly dreadful, I do look well.  Healthy even.  And as Im always so upbeat, happy and positive it can be difficult to appreciate I have a terminal illness.

But looking good or not the fact remains I do have a terminal illness and one of the reasons Mary came to see me was to discuss our local hospice - St Marys.  I know its a wonderful place and they do fantastic work there but I really dont feel it is for me - and I told her.  She was lovely and didnt try to push the idea to me, but simply asked me to keep all options open at this point, and maybe go for a visit to the hospice and see what its like.  Which is very sensible advice I decided.  Its not very realistic making decisions now, whilst Im well and not in very much pain, but things change and I have to accept that.  Maybe one day I will not only need, but want the hospice.

Im almost at the end of my break from Sutent, which is a shame because Im enjoying being able to eat or drink anything without a sore mouth or feeling queasy.  I see Dr P tomorrow for a check up and to get my next prescription.  The lumps under my arm seem to swell up and then go down on and off for no apparent reason.  When swollen, like this morning, they can be very sore and tender.  It will be interesting to see what his opinion is of this.

The hairs on my arms and legs have at last started to grow back - but they are fair, very fair actually - Im turning into a platinum blonde !  Change of hair colour is a known side effect of Sutent so Ive got my fingers crossed it affects the hair on my head too - for once in my life I will be a completely natural blonde and not and 'enhanced' one ! 

 

Sunday.....

........and Im feeling better.  Much, much better as a matter of fact.  On 2nd, 3rd, 4th and 100th examination the lump under my arm feels more of a swelling, and actually its gone down quite a lot since Friday.  And the one on my scalp is still definitely shrinking.

When will I learn to stop leaping to conclusions and jumping to self diagnoses?  When will I learn that no matter what my prognosis is, and there is no doubt of that, to take each day as I find it?  To simply endure the bad days and thoroughly enjoy the good ones?  The die has already been cast, and its up to me to make the most of the time between now and then.  And not to worry over every single little niggle on the way.  On reflection, and being sensible, I still have every reason to believe that Sutent is working and buying me time and improving my quality of life - and I must cling on to that on the bad days.

Its not like me to be pessimistic - in fact Im usually irritatingly positive - but over the past 15 months I have become so acutely aware of every lump, bump, crack, crevice and slight imperfection in my body Im instantly aware of the slightest change.  Its the same with how I feel on a day to day basis.  We all have 'off' days, days where for no particular reason we feel 'below par'.  Except for me it is always something to do with my cancer.  A simple headache is always a brain tumour - for a few moments anyway until the paracetamols work !

So anyway, today is a good day and the sun is shining and I feel well.  And incredibly lucky once more.  Reading the Sunday papers earlier I came across yet another article about someone denied Sutent by their PCT.  There are only 200 of us lucky kidney cancer patients who are funded this drug - and maybe up to 2000 who need it.  Less than half the PCTs will fund it.

Day 5 of my break from Sutent and my mouth is almost back to normal, my wee is no longer lime green and my appetite returning.  I have the most peculiar little blisters on the tops of my toes, they dont hurt, it just looks as if my red nail varnish has smudged a bit !

My McMillan nurse, Mary, from our localHospice is coming to see me on Tuesday.  Ive put it off several times now but have run out of excuses.  The thing is I just dont want to talk about having cancer, and more specifically dying.  Its not that I havnt faced it and accepted it - I just dont WANT to talk about it.  I have the same problem with friends and family.  I avoid the issue and change the subject if its brought up.  Ive thought about it a great deal and have very definite plans....ie NOT going into hospital or the hospice...and when the time is right Ill discuss them. 

But not right now please....not right now.....

 

Escape to the sun.....

.......and we certainly did.  We had a wonderful time, so relaxing and stress free and the weather was perfect all week.  Weve been to Fuerteventura so many times now it feels like a second home and the familiarity suited me very well this time, it was comforting.

We stayed in the same apartments as we did last year for our anniversary, but this time had a lovely one with a terrace over looking the pool.  It was very quiet for May, more than half the apartments were empty, probably due to the strong Euro right now which has made a big impact on British holidaymakers.  Not so the Germans though having the Euro themselves.

The days were spent either on one of the gorgeous beaches, or lazing by the pool - pure heaven.  I managed to swim every day, although very gingerly and not very far !  Martin went off surfing a couple of times and emerged with tales of death defying manouvers in the waves !

We discovered a new cocktail bar and Martin decided to try a Long Island Iced Tea - sounds pretty harmless doesnt it?  Until you see the list of spirits in it....which Martin obviously didnt as he downed it almost in one.  He pronounced it to be very nice and refreshing, with a slight kick to it.  Slight?...After 2 glasses of red wine with our meal he slurred at me that he had 'forgotten where he had parked the car'.  Which was probably a very good job as our journey, on foot, back to the apartment, was definitely of the 'zig zag' variety.

Once back he perked up and became extremely 'romantic' - until I pointed out to him that as he had trouble finding the car he would almost certainly suffer the same fate with my 'lady bits'.  So instead he collapsed on the bed and fell straight to sleep.  Hes such a lightweight !

The kids were great and seemed to thrive on the responsibility of being on their own.  They took turns at cooking etc.. and the elder 2 made sure Edward was up and ready for school on time  I think we shall have to leave them more often !

On thewhole I coped with the holiday pretty well - the side effects I was suffering from Sutent were still tolerable.  A bit of queasiness, sore mouth and reduced appetite and a general feeling of tiredness.  Monitoring my lumps every day, which I just cant help doing, showed that although they hadnt shrunk they certainly hadnt grown - and that was good enough for me.  I took my last tablet on the day we came home (7th May) and started a 2 week break before the next cycle.

However, since then (and its only Friday now) I have felt increasingly ill.  At first I put it down to just being tired after travelling, but today on checking the lump under my arm I found it has grown from the size of a Minstrel to the size of a golf ball.  And it hurts.  And my neck hurts where one of my glands is either swollen or is metastatic now.  I have to face it - this is very bad news indeed.  If Sutent is working then the tumours shouldnt grow at all - even when on a 2 week break.  Im not due to see Dr P until 20th but I shall have to call for an emergency appointment next week.  If Sutent isnt working as it now seems we will have to do some very fast thinking and try to come up with another plan.  If there is one......

Still, on the upside, I do have a fabulous tan !

 

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