I have gone from feeling good to low over the last few days :(
I was at first told I could do a clinical trial that should have given me the best chances long term like everyone else I don't want to be ill ! Two days later they said I couldn't have chemo as I was born with hirscprungs disease then was given the standard information on radio therapy side effects followed by ......... We have no idea what effect the radiation will have on your bowel or J pouch that was created in the 90s. So I am left with risking that and have no idea what the outcome will be. In the last month I have been left to make the choice. I have been told I'm high risk for secondary but at 43 having already had major bowel surgery and a radical hystorectomy I feel I
Unable to cope with making a desicion that may mean the prospect of further surgery. The result beeing unable to sleep and think straight. My head tells me no don't risk it pre cancer I was very fit active and adventurous. I now feel low bloated somewhat mutilated by the hystorectomy isthis normal ? I am taking myself to the doctors today to try see if they can offer some support to try move me forward
FormerMember
It sounds perfectly normal to me! I hope the doctors can offer you some support. You could also try phoning the mac people up. They have a great advice line.
Do you have a specialist or Macmillan nurse? They can also help when you are not sure what to do. It is so hard when your head is in a muddle with so much treatment etc.
If it is any consolation, I am coming out the other side of it all now and though it was hard at the time, I am so glad I did it all now. I had a colostomy done to get me through my treatment, and then them saying oooh not sure if we can reverse now too much damage and then a reversal with surgeon saying probably won't work but lets have a go and see... I am ok and it all worked despite 2 doctors saying they didn't think it would work. It was hard to decide but in the end it seemed a gamble of one op or two with the best outcome being close to normal again and worst another op and back to how I was. I got the close to normal and it was worth it! Though I was happy with the bag as well and a bit of me thought oh just leave it as it is. I've had enough ops etc. I am glad I went for it, even though it took me out for a couple of months. Now, I am so pleased and it was worth it long term.
You are young and some risk of bowel problems or a bag in exchange for some life and adventure sounds a good one to me. And remember it is an unknown.... not a certainty.
Good luck and a big hug and sorry for the ramble. Hope it made some sense somewhere...
