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.