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.

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.

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.

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.

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'

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.