When I was told about the tumour I had no idea it was cancerous. It wasn’t until my wonderful GP called a week later to see how I was getting on with the news that I had cancer that I realised the carcinoid tumour was a form of bowel cancer. The news nearly knocked me off my seat.
I had an operation for a resection in October 2011. Most of my small intestine and 40cm of my bowel had to be removed. Lymph glands were also removed and biopsied which confirmed the cancer had spread to the lymph glands.
It is too late to cure me so I have monthly chemo, which I will have for the rest of my life (however long that is). Recently I have been losing more weight for no reason so the doctors think the cancer has spread. I begged the doctor not to give me a stoma, but now with my daily accidents, I wonder if I should have had the procedure.
I don’t feel like I received good advice prior to my operation to remove the tumour, part of my bowel and small intestine. I wasn't told what to expect when I woke from the operation, that I would have a nasal tube, maybe a colostomy bag. I was just told I would have to have chemo for the rest of my life.
I have Santostatin injections in my butt every month. They still make me sick and the nausea is pretty bad… they didn't tell me that either!
Treatment options were not really explained to me either, except that during the operation hormones could race through my body and cause heart failure. Because of this I had a living will made up so that I wouldn't be a vegetable if I had heart failure during the operation.
I have constant diarrhoea and it gets so bad that I have accidents all the time. Even when I go shopping for groceries I can have accidents and poo runs down my legs because I can't make it to the toilet in time. I don't feel like eating anymore.
Because I need to have a toilet handy at a moment’s notice I can’t even work anymore… that makes me feel worthless I get embarrassed in front of my husband when I poo my pants. I also suffer from bipolar and sometimes I get so low that I don't want to go on with treatment.
I wanted to stop the chemotherapy because I am over it but I was told I could have maybe two years if I continue treatment and I have a beautiful little granddaughter. I want her to remember her Nanny.
I wished I had done the FOBT kit at age 50 as it may have picked this up sooner and I wouldn’t need to be writing this story or be experiencing what I am on a daily basis.
Only now am I realising the true impact bowel cancer is having on my husband, family and friends.