Up Shit Creek

April 25th, 2005

Have known about a possible genetic bowel cancer in my family (familial adenatomous polyposis) for 27 years since I was first contacted by my GP who told me that following the death of a great aunt from bowel cancer caused by FAP he’d been contacted by her consultant who’d taken a list of all surviving family members who needed screening for the polyps that could cause this cancer.

At 24 I went for the first test a proctoscopy which was so thoroughly unpleasant I decided I wasn’t going to put myself through that again. It was clear and I was told that if they were going to develop them most people had the polyps by their twenties. Also I didn’t care for what they’d do if they found the polyps which would go cancerous - cut out the affected part of the colon giving me a temporary colostomy or even a permanent one. That I couldn’t face. I decided I would rather be dead than live with one of those things. Besides all the research about bowel cancer and fibre was just coming out. I already ate a good diet and upped my intake of brown bread, brown rice, fruit and vegetables to ensure that I would never need to have parts of my bowel removed.

My 42nd birthday came and went & I was clear. Everyone who was going to get bowel cancer from FAP had advanced symptoms by their 42nd birthday. I had escaped. I had an occasional amount of blood coming from my rectum but I got it checked out and was told it was probably the result of my high fibre diet breaking some small anal blood vessels. Safe again.

But in the last couple of years I’d started to get strange symptoms. I began to “go” more than my usual 3 to 4 time a day. The bleeding got worse. More and more I found that I would suddenly get the signal that I needed to empty my bowels and not make it to the toilet in time. Often when I had a bath there would be a fine coating of small grains of sh*t lining the bottom of the tub.

Of course I knew I should do something about it. But I was terrified by the thought of bowel cancer as I thought it meant a colostomy bag for life & I couldn’t bear the thought of that. It was probably something to do with my diabetes anyway. It’s notorious for giving people diahorrea. If I went to the doctor’s they’d only blame it on that and say there was nothing they could do.

I was also tremendously embarrassed by the idea that I might have yet another thing wrong with me. I’d already had a viral cardiomyopathy, diabetes and fibroids requiring a hysterectomy I couldn’t get something else wrong with me. No one gets heart disease AND cancer do they? Besides in spite of a strong family history of breast cancer and FAP I had always been convinced that, short of being irradiated, I would never get cancer. I just knew it.

Last November things began to get worse. I was emptying my bowels more and more, the bleeding was coming out in clots so big that if I hadn’t had a hysterectomy I would have thought I was having a period. We were involved in a campaign to stop houses being built on woodland behind our house which involved regular meetings, people coming to the house at all times as we became campaign HQ because Chris runs the Hebden Bridge Web & I was supply teaching in some god awful schools. I became exhausted, began to have to lie down after I’d been to the toilet and even missed a day at work because I’d been sitting on the lavatory for most of the previous night.

Finally I went to the doctor’s who didn’t seem to be taking my symptoms seriously until I mentioned the blood, whereupon his face and manner changed. He arranged for me to to on a fast track cancer referral assuring me that he thought I had diabetic polyps. I told him about the FAP but he said I would have shown symptoms far earlier than now if it had been that.