I had rectal bleeding and abdomen pain for a year and a half before finally going back to my GP to tell her I thought the diagnosis of piles was wrong!
At one point, there was so much blood and mucous that I thought I had haemorrhaged. My GP finally referred me to another doctor who gave me a colonoscopy in January 2008, where he discovered a tumour and a number of polyps, which were removed.
I went back to the doctor a couple of weeks later to be told that it was cancer, and that we would need to act urgently to have the best possible chance of beating it. This meant six weeks’ worth of radiation therapy at St Vincent’s Hospital in just five days. Ouch! I had blisters on blisters, from my genital area to my lower back.
I signed myself out of hospital after only seven days with the approval of my specialist, in time for my daughter’s seventh birthday, the little angel. I walked as often as I could while I was in hospital, and did some physiotherapy to keep in shape, but I really just wanted to get well in the comfort of my own home. A social worker I saw while I was in the surgical ward told me that my whole life was just training for this challenge. That made sense to me. I’ve always been a survivor.
I started on a six-month course of Zeloda (chemotherapy in tablet form). I had 4000ml a day – a huge amount! My oncologist told me to expect all sorts of side effects, from thinning hair to appetite loss, and I did suffer these to a degree. My body hair disappeared altogether and my head hair thinned; I had vertigo and lost interest in food. I went into hospital weighing 50kg and came out at 42kg. That was pretty much all down to the chemo.
The road to recovery was long and hard and I was lucky to have mum staying with us for three months after the operation. I walked whenever I could but found it exhausting; I would drop my daughter off at school then have to sleep for most of the day to get my energy back! When mum left, I was terrified – now it was just me and my little girl coping alone. I was sometimes too sick to drive my daughter to visit her father, which caused problems. It felt like I was battling my cancer AND my ex and that didn’t seem very fair.
It’s been more than two years since the operation and I still have diet problems, including bowel mucous and IBS. I have problems with eating meat, which I have to slow cook it so it’s as tender as possible. I’m on a celiac diet now and that seems to help a lot. I just can’t eat the way I used to.
As of January 2010, I still had little control over my bowel and soiled myself regularly but my doctors kept telling me to accept my ‘new norm’, as they put it, and refused to listen to my complaints. Of course I’m happy to be alive, and I know positivity has helped me get through all of this, but I have had a really hard time dealing with the aftermath of cancer. I feel like there isn’t enough research into what happens after cancer, or support for people who are living their lives this way. I’ve even been told I have anger issues – who wouldn’t be angry after fighting cancer then having your experiences post-surgery ignored by everyone?
I am now on a new trial recommended by my third specialist, a great man who is a professor at Hurstville. I am on up to six gastro strops a day and 100,000 units of vitamin A, and you know what? I think it’s working. I haven’t soiled myself recently and the mucus is nowhere near as bad as it was. My stools are as normal as they can be. The specialist also sent me to a biofeed nurse. Through him, I discovered that many other patients have had the same experiences as me. He’s now conducting a study on us, which is great. Here’s to helping other sufferers!
Life after cancer is more than just getting the ‘all clear’. It’s hard physically and emotionally and, more than two years later, I finally feel like there’s a light at the end of the tunnel.
Real Life Stories
|Ben's story (28, VIC)|
I was 28 when I was diagnosed with bowel cancer in January 2011. I’d had rectal bleeding, changed bowel habits and stomach pain for a while but had put off investigating the symptoms – I was living in China at the time so I figured it was either an intestinal infection that I couldn't seem to shake or a reaction to something I’d [ ... ]