Wednesday, 29 July 2009

Team Jane

There are some pretty amazing people on 'Team Jane'.

Dr. P is one of course, always at the end of the phone if I need him, always available at his clinic even if you havn't got an appointment.

Then I have Mary my MacMillan nurse. Again, always available on the phone and if I need help urgently she swings into action instantly.

And finally my GP Dr.A. One of the lovely old fashioned GP's who does his own visits and really cares about his patients.

MacMillan nurses are experts in palliative care and pain control and within half an hour of leaving Mary a message that I was in trouble she consulted with the hospice doctor, faxed my GP and put Dr P. in the picture. She called me back and told me to double the dose of my MST. 10 minutes later Dr A. phoned to tell me there was a prescription waiting for me at the surgery.

It did the trick. I spent yesterday dozing comfortably and for the first time in days my body felt relaxed and not all tense due to the pain. I took another dose last night and slept like a baby till 2am when I was sick - almost certainly due to the fact I havn't eaten for 3 days. Then slept again till 7am and I've just forced a piece of toast down before my next dose is due.

Now I feel a bit achey, a bit woozy and a bit sicky - but SO much better than I did.

How lucky am I to have Team Jane ? They are all so dedicated and hard working and when something needs sorting they do it - instantly. No messing about or waiting. It's not just a job to them, I know they really care.

Today is another day. I've hauled myself back from the depression I was slipping into and am positive and hopeful again.

There are also other members of Team Jane. Martin, who has been simply wonderful and not complained once when I was repeatedly waking him up at night. The kids who have been really helpful fetching and carrying stuff for me. And the support and encouragement I have received from comments on here have given me a boost when I really needed it.

So to all of Team Jane - a very big Thank You !!

Cancer XXXX Cancer

Ok - now I'm starting to get angry. I need this anger right now as it's my only way of fighting back, of dealing with the pain.

Dr. P. called back yesterday with a 'plan'. I can't stop taking Sutent. I have to keep taking it because it will take at least 3-4 weeks to sort me out with an alternative treatment, probably Everolimus, and that long without any treatment would mean bye bye Jane.

So keep taking it and control the pain with MST. It takes a certain amount of courage and an awful lot of faith to take a tablet in the full knowledge it will cause you agony - and yet that's what I did last night. Then I took my MST and fell asleep. Until 3am when I woke in agony again. So I took some Oramorph, tossed and turned for the rest of the night, and got up at 7am still in agony.

I'm only on a very low dose of MST, 20mg twice a day, so I expect it will need increasing. I bloody hope so anyway !

Once I get my pain relief sorted I'll be happier - and feel more positive again. I may have to spend the next month drugged up but it will be worth it. It's pretty frightening to be in constant pain and not knowing when, or if, it's going to get better. I know Martin is worried sick, I can see it on his face, and I'm trying to hide it as much as possible from the kids.

3 weeks today on 19th August is the launch of the documentary so I HAVE to be better by then - or at least have the pain well controlled. That's my goal at the moment and it gives me something to aim for.

Monday, 27 July 2009

It's back

I spent last night in a world of pain. Nothing worked. No amount of Oramorph. Every single joint in my body was aching right down to my ankles, fingers and even my jaw. My thighs are agony too.
I managed to struggle downstairs this morning, I've got the district nurse and physio's coming today, but all I really want to do is go back to bed and lie there feeling sorry for myself.
I shall have to call Dr P. later this morning and let him know whats happened - that I've had to stop taking Sutent again as that is obviously what is causing this problem, I had improved so much whilst I wasn't taking it.
I'm going to start taking the MST I was prescribed tonight - I didn't want to take it before in case it masked any new symptoms or pains. Also because it seems like a step down the path I really don't want to go down yet....just yet. But this constant pain is starting to get me down.
So what now? Is this the beginning of the end? Or is there something else that will help me?
For the first time ever I'm starting to feel despondent - which I hate. Its probably due to the pain I'm in, lack of sleep, and being so frustrated at being stuck in the house.

Saturday, 25 July 2009

For better or for worse?

Martin and I had a row at the weekend - a real humdinger of one. Not so unusual you may think but in our case it is. We have hardly had a cross word for the past two and a half years.

We used to. Like most couples I guess over the space of 27 years we had our fair share of blazing rows. On the whole though we have always been a happy couple. But caring for and supporting each other seemed natural in normal circumstances. Everything changes when one partner is diagnosed with a terminal illness.

When this happens society expects the sufferer to move into sainthood mode, whilst the partner becomes a ministering angel. But of course the reality isn't like that.

The reality for Martin has been that shortly after retiring from 30 years service in the Police Force all our plans for the future had to change dramatically. The children were almost grown up and we were going to move to the coast, something Martin has always wanted to do. Now our lives are caught in the stranglehold of cancer treatment, unable to move house, unable to plan anything very far in advance. Now he has so much more to deal with - he works full time in a job he enjoys but which can be very stressful, he has had to take over certain jobs around the house which I'm not capable of doing any more, with my critical eye on him. And of course he worries about me constantly.

You never think about something like this when you get married. You think that you will be together for 40 or 50 years and then one of you will simply fade away. You can't imagine your relationship being ended in such a dramatic fashion.

So far we have coped with our, slightly warped at times, sense of humour. Trying to treat each hurdle I come up against as lightheartedly as possible. But it isn't easy. I'm very conscious of not being selfish or self absorbed, of trying to keep life as normal as possible under the circumstances, of being upbeat and positive (which can be irritating at times I know) and of making however long I have left as happy as I can for everyone.

I've never been angry about my illness. I've been through the stages of the cancer journey, some of them several times, but I've never felt anger. I don't think Martin does either but he gets very frustrated at times. He has never been one to show his emotions but in the past couple of years I've seen him cry - and it breaks my heart. We have talked about what life will be like without me - he plans to buy a Harley Davidson and ride across America (slightly pissed off because I would love to do that !) but when the time comes I know it is going to be so hard for him.
I have the easy part in this - his is far more difficult because he will have to carry on afterwards and cope with the fallout of my death with the children.
So I guess the odd row or two is inevitable - and healthy. He still feels able to shout at me, he's not treating me as an invalid who mustn't be upset. The very last thing I want is for him to feel resentment towards me because of the illness I've brought into our life which has turned it upside down.

Thursday, 23 July 2009

Once more unto the breach....

Last night I started taking Sutent at my normal dose again. Pretty apprehensively I must admit.

I saw Dr Kaur again yesterday morning, Dr. P's registrar. Apparently Pfizer (who make Sutent) have never heard of such a severe reaction and question whether it is Sutent that has caused it. And of course there is only one way to be sure - to start taking it again and see what happens. I should know within the next 48 hours. Apart from my left knee, which is still very painful and a bit swollen, the rest of my joints just ache, the awful pain has gone. And I really don't want it to come back !

So far so good - I don't feel any worse this morning.

It feels like I've been off Sutent for ages but in fact it's only 10 days so it should still be fighting my cancer. I've been checking my tumours regularly for any sign of them growing and they don't appear to be. And I still feel well. So I'm keeping all my fingers, and toes, crossed that the pain doesn't return and I can stay on it.

If it doesn't return then the question will be what on earth caused the problem in my joints? But I'm not worrying about that now - I'm just hoping and praying that I can continue to take Sutent and that it continues to do the job it has been doing - keeping my cancer well and truly under control.

Friday, 17 July 2009

NICE appeal 13/7/2009

I'm feeling a bit better. The pain killers, after a bit of tweaking, are working well and I'm managing to hobble around the house with the aid of my nice, shiny, new zimmer (complete with bell). I still have to crawl upstairs on my hands and knees, and come down on my bottom like a toddler, but just being able to move about has made a big difference. The combination of Co-codamol and Oramorph makes me feel nice and warm and fuzzy during the day and helps me sleep at night and fortunately the nausea has gone.

The diarrhoea I suffered whilst taking Sutent has now been replaced by constipation - due to the codeine I am taking. So instead of racing to the loo (which I couldn't do now anyway) I now spend ages just sitting and waiting...and waiting. I just can't win in the loo stakes can I? I'm getting some Lactulose today which should sort that particular problem out.

So I'm feeling much more positive and ready for whatever Dr P. has lined up for me on Thursday - if he is allowed to have anything lined up that is.

Which brings me back to the NICE appeal which was held on Monday. The appeal was against NICE's decision to refuse funding for 3 kc drugs - Nexavar, Torisel and Avastin and for the use of Sutent as a second line drug.

I have been advised that to write in detail about the appeal prior to the results being published could be detrimental to any future appeals we may wish to make. So I shall wait. But when the time is right I WILL write about it. Especially about the insensitive remarks made and the inappropriate behaviour (giggling together and smug smirks) of a couple of members of the Appraisal board.

So instead I will leave you with the words of the other kc patient to speak at the appeal, David.

'I used to think that being given a terminal diagnosis was the worst possible news I could receive. I was wrong. Being told I have a terminal illness, however there are licensed, effective drugs which could extend my life - but I cant have them.

THAT is the worst possible news'

Tuesday, 14 July 2009

I've had better days.

I can't walk. I have excruciating pain in my shoulders, hips and knees. Absolute agony.

I had been having this pain for a few weeks and coping with it but on Monday afternoon, when I was at the NICE appeal, (I'll write about that when I feel better) it suddenly became worse. Martin managed to get hold of Dr. P. and tell him what was happening. He said to stop taking Sutent immediately, take tramadol for the pain, and see his registrar at the Cancer Centre at 9am Tuesday morning (he was in London himself).

'Stop taking Sutent' - the worse possible news.

I just about managed to get home that evening, took some tramadol and went to bed. Unfortunately the tramadol didn't work and I had a sleepless night - so did Martin with me groaning next to him.

The next morning, Tuesday, I couldn't walk at all. The pain was dreadful and I couldn't weight bear. I couldn't even bend down to put my knickers on. With Martins help (what would I do without him?) I managed to get in the car and at the hospital he found a wheelchair for me.

Dr. P's registrar saw me straight away. She examined me from head to toe and then ordered a battery of tests and x-rays which took the rest of the morning. They came back clear with no sign of metastatic disease, apart from a small tumour in my left hip we knew about, no sign of arthritis or any inflammatory condition.

So it appears that it's Sutent, at its highest dose, with short breaks, that has caused this.

I came home with a carrier bag of very strong pain killers, co-codamol every 4 hours and Oramorph (liquid morphine) for break through pain. Its working but I feel permanently high, woozy and a bit nauseous. Anything is better than that awful pain though.

I called Mary, my Macmillan nurse, and she has organised some walking sticks, a loo seat and a zimmer frame for me (which the kids think is hilarious and Martin says he will attach a bell to) so I can start to mobilise.

But my biggest worry is that I'm not having any treatment for my mRcc now. I'm seeing Dr. P. again next Thursday to decide on a plan. There is a slight possibility I will be able to start Sutent again at a much lower dose but that really isn't likely- this is such a severe reaction.

Thanks to NICE there are no approved alternatives for me. There are licensed, effective drugs out there but the NHS wont fund them. My cancer is so aggressive I have only a few weeks to play with.

But I have Dr. P. and I have complete confidence in him. He will do everything possible for me I know.

Friday, 10 July 2009

Sutent side effects - the full monty !

Since Sutent was approved for funding as a 1st line treatment earlier this year I have had many emails asking me about the side effects. So I thought it's about time I did a comprehensive list of the ones I have encountered - and how I have coped with them. This is just my personal experience of course over the past 18 months, the side effects differ from patient to patient, but I hope I can pass on a few useful tips.

I've been lucky (!) enough to suffer almost all of them but without exception I have found them all to be manageable in one way or another. The severity can differ from cycle to cycle and some disappear altogether after a while - for instance in the first few cycles I had a very sore mouth but now it's fine.

Right - here we go.....

First of all take your Sutent at night just before you go to bed - that way you sleep through the worst of the side effects.

Sore mouth/tongue - use children's toothpaste and an alcohol free mouth wash. Bland foods such as yoghurt, mashed potato, pasta etc.. are best when its really sore and nothing too hot or too cold. Luke warm is best. Use a straw to drink with if your lips are affected. As I said I suffered with a very sore mouth for the first couple of cycles but it hasn't bothered me since and I can eat or drink anything now.

Indigestion/bloated tummy - I take Pantoprazole (on prescription) for indigestion and to prevent gastric reflux. However I still suffered with awful indigestion at times and it was only when a friend suggested cutting caffeine from my diet that I really got it under control. It was a revelation and made such a difference. So now I drink de-caff coffee (it's not that bad really) and caffeine free coke (you get used to it) and don't eat much chocolate (that's the hard one!)
The best way I have found to cope with that horrid bloated feeling is to eat little and often, even if you don't feel hungry.

Elevated blood pressure - there's not much you can do about this. Make sure you have your BP checked regularly, at least once a week. Mine became raised within a couple of cycles so I take 10mg Amlodipine daily and it is now stable.

Decreased thyroid function - Make sure you have your TSH (thyroid function) checked whenever you have a blood test. Mine has been slightly elevated but no need for treatment as yet.

Changes to hair/skin colour - My hair is now white (or platinum blonde as I prefer to call it) ALL over my body. White eyebrows and eyelashes can be dealt with by using mascara and eyebrow pencil for us ladies - not sure whether the men would want to go this far though. I still have my hair coloured as you can get the odd darker hair, or even stripey hairs, sprouting through which looks most peculiar.
At the end of the cycle my skin develops a yellowish/grey tinge to it but that soon goes during the break. It's also become very sensitive and burns very easily in the sun so I now use a very high factor sunscreen - and fake tan !
My nails have also got a distinct yellow tinge to them - they look like they belong to a 60 a day smoker !
My eyes get quite puffy at the end of the cycle now - it looks like I've been out on the lash - but this soon clears up during the break.

Hand and foot syndrome - My hands have been quite bad a times, again this has varied from cycle to cycle, with cracked sore skin and pockets of pus down the sides of the nails. It can be really painful. Udder cream is definitely the best thing - buy it online in big tubs and smother your hands with it at least twice a day, they just soak it up. Its good for your feet too even if they aren't sore as it keeps the skin lovely and soft and supple. I always use gloves for washing up (if you can't get husband or kids to do it) and being a keen cook I wear disposable latex gloves for chopping/peeling etc..
When your feet are very tender it can be difficult finding suitable footwear - the only things I find really comfortable are flip flops in the summer and lovely soft fluffy Ugg boots in the winter.

Diarrhoea - This can be a right pain in the arse (if you'll excuse the expression!) - literally. The first sign and I take Loperamide - and keep taking it until it clears up. It can depend on what you eat of course - if you eat a curry you are asking for it. When it's been severe I've had a very sore bottom. I find that applying Sudacrem, it stings a bit at first, really helps it heal.
Don't be alarmed if your wee and poo change colour. My wee goes a bright lime green and my poo a nice pale orange. I'm pretty sure this is due to the colour of the capsules - I had one break in my hand once and despite a thorough washing it stained my hand orange.
I also suffer from excess 'wind' at times which causes much amusement in our house with the kids chasing after me with air freshener.

Tiredness/sheer bloody exhaustion - There is only one cure for this. Rest. Something I rarely do myself. But if I'm really exhausted a nap in the afternoon or simply just putting my feet up for an hour can really help.

Aches and pains in muscles and joints - I get cramp in the weirdest of places - in my fingers and along my shins. It can be really painful but doesn't last long fortunately.
Recently, in the past few weeks, Ive started getting pain in my joints and muscles. In my hips, my knees, shoulders and thighs. It can be pretty severe and debilitating and I find myself hobbling around like an old lady. Its early days but so far a cocktail of paracetamols and ibruprofen, 'piggy backing' them, take the edge off the pain (check with your GP before doing this of course).

Reading the above sounds awful but really it isn't. Life has carried on pretty much as normal for me. In the past 12 months I've travelled extensively and done things I never thought would be possible before I had cancer - let alone after.

The important thing is to remember it's Sutent that is keeping you alive and you can cope with the side effects as and when they occur. Remember to report them to your oncologist and discuss ways of dealing with them.

I'm off to London to speak at the NICE appeal on Monday - I can just imagine what some of the board members will be thinking when they see my face - "Oh no, its that bloody woman again!"

Tuesday, 7 July 2009

Listen to your body......

.....that's what you are always told. 'Listen to your body'. And I do, really I do. The trouble is I completely ignore what it is telling me. The upshot of this is that now I'm home and completely and utterly exhausted having walked MILES whilst on our cruise. And with severe pain in my legs, hips and left shoulder. I cant even bend down to stroke the cats ! It's all my own fault I know it is.
My head tells me I should rest - but my heart says make the most of every single moment because you may never be here again. How could I stay on the ship and rest when there is Rome, or Genoa, or St Raphael to explore?
We caught the train into Rome again and the first stop was St. Peters. We queued in the boiling hot midday sun to get through security to get into the lovely calm, cool Basilica. I pointed out the small side chapel in there to Matt and Edward and said "A nun is constantly praying in there, 24 hours a day, 365 days a year" Ed replied "Doesn't she eat or sleep??" We all cracked up laughing - kids huh?
After spending an hour in there we caught an open top bus for a tour of the rest of Rome. Which was a great idea until we got stuck in Rome's dreadful traffic. And the skies darkened and thunder started to rumble around us. At the first big heavy drops of rain we jumped off the bus and decided to make our way to Rome's main station - which turned out to be a really good decision time wise.
The train back, which normally takes an hour, stopped at every single station on it's way back to the port, Cittivechia, almost doubling that time so we had a bit of a sprint to get back on board before 6pm (and I really don't do sprinting - its more of a fast waddle) We wern't the only ones - several passengers were seen running along the quayside just after 6.
Genoa is a typical old Italian town comprising of narrow cobbled streets and very steep steps leading to beautiful piazza's. It was a real struggle for me, especially up those steps, but the shops were calling and I had promised to buy Catherine a real Italian hand bag. Which I did, a beautiful cream leather one (which I shall be borrowing at the earliest opportunity!) We then sat in one of the piazza's at a cafe drinking espresso (me) and eating pizza (the boys) and watching the world go by.
The next day when we docked at St. Raphael there was no way, despite all my aches and pains, I was staying on board either. Because right in front of the ship was a long sandy beach ! So we spent the morning sunbathing (me under a big umbrella) and swimming. Lunch was a traditional, but expensive affair - Bouillabaisse - in a little restaurant on the front.
So all in all we had an absolutely fabulous time - but I'm paying for it now. And for once I AM listening to my body and resting. The washing and ironing can wait. The most important thing is to get me feeling well again and pain free. And I know I will be - a few days and I'll be as good as new (well as good as I can be!)
I recently heard a song from my childhood - a song that makes me smile and sums up my attitude to life. In fact I've decided it will be my theme song.....

Saturday, 4 July 2009

This is what it's all about

On Monday 13th July the appeal against NICE's decision to refuse funding for Sutent (2nd line) Nexavar, Torisel and Avastin will be held in London. The James Whale Fund have asked if I, as a 2nd line Sutent patient, will speak there.

Of course I will be there - wild horses wouldn't stop me.

The success of having Sutent approved earlier this year as a 1st line treatment is only, and can only, be the beginning. The idea of having a 'one size fits all' treatment is ridiculous - especially with all the new drugs becoming available now. We need alternatives and sequential treatments.

So, nice as its been to be travelling around Europe, I'm looking forward to coming home tomorrow and going to London.

Because this is whats really important. This is what it's all about.

Thursday, 2 July 2009

Tunis and Tumours

Ok, yes I know, I seem to have spent more time abroad than Judith Chalmers on a busy year - in fact I think I'd qualify as a tax exile now - but I feel as if I really needed this cruise for a rest. Its been an incredibly hectic year so far with so much going on and Ive had a few dodgy days health wise, a couple of them just before we left. I was in quite a lot of pain in my left hip and the painkillers wern't having much effect at all. In fact the evening before we were due to leave I was seriously considering staying at home. When you are in pain and frightened all you want is your own bed - and your doctor and nurse on the end of the phone.

Fortunately regular use of paracetamol and ibruprofen and a weeks Sutent seem to have eased the pain somewhat. Its still there but it is bearable and I'm able to get out and about.

Our first port of call was Tunis, somewhere I had visited many years ago, and I must say it has changed out of all recognition. They have a new progressive President in charge and he is really trying to modernise the country, whilst it still remaining Muslim. Not an easy task.

One again we did our own thing rather than going on an organised excursion. Wandering out of the port we came across a taxi driver, Mustapha, and after a bit of haggling, struck a deal with him to take us to the Medina. Matt reckons Mustapha must be in the Tunisian Mafia because of all the connections he had - everyone seemed to know him. The Tunisian President was in residence and security was very tight but Mustapha was waved through road blocks like royalty ! Im sure he could have got us an invite for tea if he had wanted !

As it was he took us to 'the best beach in Tunis'. I really wish he hadn't bothered. It comprised mainly of builders sand, dog poo and ants. We didn't stay long.

Then we went to the Medina, or Souk, which is a huge market situated in very narrow streets. Its a bit like a rabbit warren and smells like one too! It was only 10am but the heat was already oppressive in there, the little passages are roughly cobbled and all the shops sell virtually the same thing - tat. It was horrendously claustrophobic and it would have been so easy to get lost in there. Fortunately Martin was 'scout' and his sense of direction got us out unscathed or we would have been doomed to wander forever having stuffed camels and brass ashtrays waved in our faces.

Being very aware of the time, the ship sailed at 12.30, and we didn't want to do a 'Mr & Mrs Green' (who missed the boat on our last cruise) we then returned to the ship and our lovely air conditioned cabin. It is so very hot here and the sun is so powerful. I couldn't sit in direct sunlight for more than about half an hour - you can actually feel the sun blistering your skin. Some passengers are made of sterner stuff however and spend virtually all day frying themselves - the results of which could be seen in the bar last night - it looked like a lobsters convention! I wish I had the concession for selling aftersun on here, Id make a fortune.

During the afternoon the Captain announced there were a few dolphins passing by on the port side of the ship. By the time everyone had worked out the port side was the left side (I knew - honestly) and stampeded over there all that was visible was a couple of flicks of their tails (the dolphins not the passengers) before they disappeared from view. Several people complained "Well that wasn't very exciting"
What did they expect?
The dolphins to be jumping through hoops and balancing balls on their noses?