Seven years on, reflections on bowel cancer

It's that time of year again. This time seven years ago I was under the knife for life-saving surgery to remove a cancerous tumour. It's an anniversary of sorts, although I don't think you'll find a celebratory card in Clintons (not sure if you even have Clintons in NZ - think Whitcoulls or something!).

Over the past few months, I've been working on the bowel screening programme for Hutt Valley District Health Board. Screening is a new thing in New Zealand and a large part of my role is encouraging eligible people to participate in the programme. I find myself sharing my story more than I had ever anticipated, but I guess it helps brings it home to people that bowel cancer really could affect anyone. It also helps get over that hurdle of foreign-ness (why is this 'pakeha' here to tell us what to do? She doesn't know us or our culture, what is the DHB thinking?!)

So, to mark this occasion, here are some comments based on my experience of both cancer and my work:

1. Not everyone knows what you mean by 'bowel'. Actually, when I think back to my own diagnosis, I wasn't entirely clear if all these terms meant the same thing either: bowel cancer, colon cancer and colorectal cancer being pretty much interchangeable. I had a rectal cancer, so a particular type of bowel cancer.

Talking to some kids at a Pasifika event, we also talked about guts, intestines, the connection between your stomach and where the waste comes out... 

The NZ national bowel screening website has a description of the bowel here:

And the Bowel Cancer UK site, has a 3D style of model with more info here:

2. Talking about poo without actually saying poo. Some cultures are much better at talking about poo than others. Unfortunately in some it is really a taboo. In NZ, the screening test involves dipping a small stick (part of the test kit) into your poo to collect a sample.  People think this sounds a bit icky, but it is simple to do and non-invasive. 

Knowing that some cultures find certain words taboo, means you end up picking your words carefully or pausing as if to put inverted commas around the word. Options are poop, number two, bowel motion (OK if you've already gone through the explanation of what your bowel is), 'sample', faeces. 

The Scots have fewer scruples than Pacific Islanders in this regard! Get the sound on for the poo song:

Love this bit: Don't be snobby, test your jobby!

3. My cancer wasn't caught early...  but it wasn't caught too late (obviously!)
Bowel cancer caught early is very treatable. Fantastic survival rates for diagnosis at stage 1 (localised tumour, no spread to lymph nodes, still within bowel). Very poor outcomes for stage 4 (where cancer has spread to other organs such as liver or lungs).

For me, I was stage 3 - the tumour was edging through the muscle wall of the rectum, and a couple of lymph nodes were affected. The way that staging is described is confusing because the stage of the tumour is not necessarily the overall staging related to the Dukes A, B, C system. So my tumour was described as T4 because it was locally advanced.

How come I wasn't diagnosed earlier? There was an assumption that my problem was an internal haemorrhoid. I was young for bowel cancer and not in a high risk group. I never suspected cancer.

One of the great things about screening is the opportunity to prevent cancer even forming in the first place. People with a positive result in their screening test (showing abnormal amounts of blood in their sample) are are invited in for further investigation by colonoscopy. If polyps are found during the colonoscopy, they can be removed there and then before they even have an opportunity to turn cancerous. Many patients in Hutt Valley have already benefited from this since the screening programme went live in July. Yay.

There are lots of other things I could say or comment on, but this is already a long post now. Just briefly for anyone who didn't know me at the time, my cancer treatment involved radiotherapy,  surgery and chemo. Susannah was not even two years old when I was diagnosed. I didn't lose my hair, but chemo sucked. I have a permanent colostomy. Radiation to the pelvis brings on menopause. I more or less kept dancing. I more or less kept an exceptionally positive outlook. I was lucky.

Oh yes... and that was the start of my blogging (initially on the Macmillan Cancer Support forum). Thank you to Elspeth for suggesting it would be a good way to keep people up to date with my progress. She was right, it was a good way to share what was going on, but more than that. It was therapeutic and helped me to explore writing in a way I never would have before. One of the silver linings on the cancer cloud.

This photo is from August 2011. After the year of treatment, I did a year of fundraising for Macmillan Cancer Support - a fantastic UK charity that I had benefited from - and this was one of the publicity photos taken in the back garden.

I am happy to answer questions about any of my experience if anyone wants to know more.

And don't forget the words of the ditty: Don't be snobby, check your jobby!

Take care dear friends x


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