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.