Ben's bowel cancer story (diagnosed age 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 eaten. 

And thanks to a perforated appendix the year before, I had become used to lower gastrointestinal troubles.

By the time I came back to Australia to apply for a new visa, I had lost about 3 or 4 kg.  Mum made me go for a colonoscopy.  I saw her GP to get a referral and, to my surprise, he didn't question this at all.

Needless to say the colonoscopy showed a tumour.  Soon after my colonoscopy I met two surgeons and chose one – along with an oncologist and hospital – based on the integrated nature of their patient management.  It’s difficult to say what stage the cancer was at when I was diagnosed.  I don't like clinical staging because it is confusing to the patient and imprecise (or at least it was in my case), but it was either stage II or III.

My tumour was completely removed in July in surgery, when I had an ultra-low anterior resection, a loop ileostomy and left-sided vasectomy.  I was told there was a chance I could lose my bladder and prostate but thankfully this didn't happen.  I was supposed to live with the stoma for only four weeks at first but a leak at the anastomosis (where the healthy parts of the colon were re-joined) made me quite sick and delayed chemotherapy.  I recovered in hospital for four weeks.

As well as six weeks of pre-operative chemotherapy I had 28 doses of radiotherapy to the lower pelvis.  I coped with the side-effects of both treatments pretty well and was able to continue jogging throughout my treatment period.  Some of the symptoms I experienced included a sore anus, diarrhoea and hair loss (pubic, and along my sacrum).

I had followed a mostly vegetarian diet for five years before my diagnosis, and was even approaching veganism, so it wasn’t hard for me to go entirely vegan during my chemo and radiotherapy and in the lead up to surgery.  I went off food completely during my hospital stay and lost 14 kg (I weighed 92 kg before surgery and am 200 cm tall).  There were no vegan meal options in hospital so I began to eat meat because it was easier.

After being discharged I went on a four-week binge of fast food, milkshakes, pies and chocolate in an attempt to gain weight.  When I didn’t put on the weight as fast as I thought I would, I decided that filling my body with that kind of food just wasn’t worth it.  I went back to vegetarianism and have continued to put weight back on.  I am currently 90 kg.

I was young and self-employed when all this happened to me.  I didn’t have any kind of insurance so I had to move home to Mum’s.  I would never have tried these things before my diagnosis but I’m now seeking the help of non-traditional therapists too, including an energetic doctor and a Chinese herbalist, as well as undertaking regular meditation and appointments with a counsellor.

One positive thing that has come out of all of this is getting to know my mind and body much better than before.  I think I’m a much better person now.  I set up a science communication blog (www.benbbrave.blogspot.com) to try to understand my treatments and now I get excellent feedback from fellow cancer sufferers and their families.  Talking to these people is great therapy for all of us.

There is some support out there.  The Warwick Foundation formed a small support group on Facebook, which I named ‘Bum Buddies’.  We are all bowel cancer sufferers in our late 20s and early 30s and being involved with that has been amazing.  I believe we can all learn so much by sharing our experiences.

I still get scared from time to time but I have such a great support network and I’m doing everything I can to help my healing by working with the orthodox medical system.

Banner Bowel Cancer Australia Helpline
Support Bowel Cancer Australia
Bowel Cancer Australia Bowel Cancer App