What they don’t tell you

As I have said before as in my last post, in 2001 I was diagnosed with stage III cervical cancer. In September (just a week or so after 9/11) I was given the all clear. My treatment had been successful. Yippee, hurray, I got my life back. I remember one of my boys saying “I’ve got my mummy back”. It was a time to celebrate.

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What they didn’t tell me (I was told a few people have long term bowl/bladder problems). I would from then on be terrified of food that I had always loved. I look at the fruit bowl with longing. Grannie smith apples beckon to me with their glistening green peel. Crisp pears appeal to me. Peanuts and Cashews tempt me. In short anything with fibre is dangerous to me. Last week I treated myself to a small handfull of dried fruit in the evening. I woke up in agony and had to rush to the toilet not quite getting there in time.

I can and do occasionally eat small amounts of the foods I desire but fear. I have to plan when I can eat these things ie when I don’t expect to be out of the house for long the next day. Going for long walks are a thing of the past unfortunately. Apart from the time the activity makes my bowels work harder.

As I talked about in my last post ” the cost of surviving cancer” my bladder is badly damaged and I am now awaiting major surgery to make my life better. However over the last 18 years although my bladder has been a problem it has been my bowels that have made my life so difficult. It is only the last year that my bladder has over taken my bowel problems.

This doesn’t mean that my bowel problems have become less annoying. For 18 months until this April I was delivering parcels for a living. Not the best career for someone with my problems. I would be working when I would get a feeling and have to make a mad dash either home or to the nearest place where I could use the public toilets. I didn’t always get there in time even though it might have only taken me 5 minutes. Many times I only get seconds let alone minutes notice that my body is about to eject it’s contents. I can’t begin to count the number of times that I have needed to get completely changed and showered. During the years I worked in an office there were times I had to dash home to get cleaned up.

I love to wear pretty clothes, skirts, dresses, bright colours. I have had to learn to wear clothes that are dark (black or navy trousers) long tops that camoflage any accidents that may occur.

I wonder how many women would think twice about not being tested for cervical cancer if they knew that apart from the treatment which can be harrowing. If they knew that their reluctance to under go the indignity of a smear test could lead to a life like mine.

During the months of treatment there are rules that have to be adhered to. There are reasons for these seemingly odd rules. When I attended my first radiotherapy session (following weeks of tests measurements, scans etc) I was given a list of foods I couldn’t eat. Basically I could only eat food that is generally considered to be unhealthy. I still keep to this diet now because my body gives me no choice. I couldn’t wear perfume. Showers were out. Baths had to be luke warm and no bath oil or bubbles. How disconcerting to be laying in a luke warm bath with nothing to hide the floating hair. I didn’t lose the hair on my head as I didn’t have chemo, but the hair on my body.

How many women would willingly put themselves through all this for the sake of a five minute appointment if they knew what they were letting themselves in for.

I know I am lucky to be alive, others didn’t make it, however I wouldn’t wish anyone to live this way if they can avoid it.