I am 51yrs of age.in August 13 I had a perforated bowel which required emergency surgery and they found a large tumor with 4nodes affected.I had 15 cycles of oxiplatine and 5fu.followed by 25cycles of radiation therapy.and joint oral chemo .because of my perforation I also ended up with a permanent colostomy.after spending several months in and out of hospital with a bowel blockage caused by radiation treatment I spent 6wks in hospital being tpn fed as I was malnourished due to not being able to eat.i had a bowel resection and now have permanent following.that was April 15.In Oct 15 I had my yearly check and scans including a pet scan.I was then told I had the mutation gene and that the cancer was still in pelvis and had also spread to liver and both lungs.they gave me world 6mnths.only treatment scalable was chemo. I chose not to have any more.i wanted to enjoy what time I have left and not be attached to the hospital.So I chose to live in ignorance.my husband and children are devastated but respect my wishes.However 1yr on I'm still here still very healthy I don't feel ill.i don't suffer with breathlessness or cough despite both lungs having several deposits on each so I question if they could have got the results wrong.my hospice nurse says it is strange but everyone s journey is different and to keep doing what I am.they did explain I could go down hill very quickly.i feel like a fraud.I feel that everyone is suffering whilst waiting for the benefit able to happen.i would like to no if anybody has any advice on any trials available I am healthy despite the cancer and I don't feel like I'm dying.any advice or information would be appreciated.I am not even sure who or what I should be talking to and who to ask.
