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.


Anonymous said...

I believe for you there will be a plan from your wonderful Dr P, you are in so many thoughts and prayers ,and are a wonderful inspiration to all who read this blog, they walk with you step by step and will hound this NHS NICE group to meet the needs of those they are there to serve.

Herrad said...

Hi Jane,

Hang in there, hope your doctor comes up with a plan for you.

Thinking about you.

Emma said...

Hi Jane

Thinking of you.


LYN said...


Alexei said...

I have confidence that you will conquer this setback as you have so many others.

Thinking of you


Sybil said...

My dear Jane, you are in my thoughts throughout the day and in my prayers too...
Hang on in there dear friend..
very much love Sybil xx

Andy said...

My thoughts and prayers are with you


Deb said...

I've just sent you an email with additional information on Sutent and a contact number for the Health Dept. at Pfizer.....sure hope it helps.
Take care,

Daria said...

Let's hope they find something soon and something that is very effective.

Anonymous said...

Jane watching for news and thinking very much about you,soon yor Dr P will be back and am certain he will help you, you are one very precious lady. God Bless you

Jane said...

I had meningitis earlier this year and at one point during my early convalescence was gven a walking frame to use about the house. If there's anything more likely to make one feel decrepit then I hope I don't come across it until I'm in my dotage and don't give a damn.

When I'd recovered enough to get back online I was thrilled to see you still posting. You're doing a fabulous job of educating.