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.
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6 comments:
Hang in there Jane I'm sure they can up the dosage to keep the pain at bay! There are so many good thoughts coming your way lets pray they work!
Having a shout sometimes to ease tension wouldn't do any harm either so don't bottle it all up let it out! Just try not to throw anything of value in the process.
Love Jackie
Don't worry about getting angry Jane, if it helps you get rid of some of that tension. If I hear you shouting over here, well then it's time to lower it a bit...LOL
My prayers are with you for relief from your nagging pain...keep positive as I know you well. Wish I could see that documentary here...if there will be a link, let me know.
You are one amazing woman, oh, and did I mention a true warrior who will NOT let this present bump along the road stand in your way!!!
Take care,
Deb
I WOULD BE FLIPPING ANGRY TOO..
GOD BLESS YOU STILL WORRYING ABOUT MARTIN AND THE KIDS..
YOU ARE ONE AMAZING FIGHTER JANE!!
TELL THEM YOU NEED MORE PAIN MEDS AND BECOME A PAIN WARRIOR FOR THE NEXT FEW WEEKS!!
I AGREE HAVING A GOAL WILL HELP YOU...
KEEP OM KEEPING ON MY LOVE...
My Dearet Jane, shout and scream and I will do likewise for you..Then whenever possible put the smile back in place so we know but nobody else might know the struggle going on behind that smile..
God Bless, Much Love Sybil xx
Hello Jane
Scream and shout and stamp your feet - if only that would get rid of the pain eh ? Your such a wonderful girl, managing the pain, worrying about Martin and keeping it all from your children. What spirit you have, and it is that very spirit that will see you through.
Big Luv,
Jaynee X
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