Thomas’s Story

“In the summer of 2012 I wasn’t feeling well. I was tired. I went to my GP; she thought I had asthma and prescribed an inhaler. No improvement. I went back. She thought I was depressed and prescribed citalopram. No improvement, although I did yawn so much I thought I would dislocate my jaw. I went back yet again. This time she took some blood.

On a Saturday she rang and told me that I needed to get to Christchurch A&E as soon as possible. She said I was so anaemic she was surprised I was conscious and able to function.

So began Bowel Cancer Act I.

At Christchurch Hospital I was diagnosed with bowel cancer in my ascending colon. I met my surgeon; he performed a right hemi-colectomy a week later at Southern Cross Hospital Christchurch. While I had two significant complications – ileus (where your bowel goes to sleep and doesn’t want to start functioning again) and atrial fibrillation (a common heart arrhythmia) – I was extremely lucky. My tumour was graded T3-N0-M0 and that was that. No other treatment required.

What followed was CEA blood tests every three months as well as colonoscopies and CT scans every year. Otherwise life went on as before.

I replaced my GP – although to be fair I never had any bowel-related symptoms.

When I passed the one year post-surgery mark I heard words of assurance – recurrence is apparently most likely in the first year after surgery. When I passed the five year mark I heard further words of assurance – five years is considered the time frame after which some people consider you cured of cancer. The CEA blood tests and CT scans eventually ended and the colonoscopies became fewer in frequency.

12 years flew by.

In the spring of 2023 I wasn’t feeling well. I was slowly alternating between mild constipation and mild diarrhoea. My GP prescribed loperamide.

Although I wasn’t due for my next colonoscopy until May 2024, I thought I should get things checked out so I went back to my surgeon. He scheduled a colonoscopy. That was smart on my part. What was incredibly foolish on my part was I had a scheduling conflict; I cancelled the colonoscopy and I failed to make a new appointment as my symptoms disappeared in the interim.

In October 2023 my atrial fibrillation acted up (first time in a long time) and I wound up in A&E. The emergency doctor sorted out my atrial fibrillation. But he also wagged his finger at me. “WHY ARE YOU ANAEMIC?” he asked rather strongly. “Your iron has been slowly declining over the past few years. I am going to give you an iron infusion before you leave but you need to find out the cause.”

ANAEMIA???? Off went the alarm bells.

So began Bowel Cancer Act II.

Finding out it was faster and cheaper than a conventional colonoscopy, I scheduled a CT colonography. This was completed within a couple of days of my A&E visit. The report was a shocker – the radiologist recommended an urgent referral for surgery as a tumour was located in my transverse colon.

I rang my surgeon’s rooms and told the nurse that I had just been diagnosed with bowel cancer – again. I was seen later that day by my surgeon and surgery was scheduled for the next week.

Same surgeon, same hospital, and same surgical procedure (more or less – this one was called an extended right hemicolectomy) made the situation feel quite surreal. One of the nurses at Southern Cross Hospital asked me if I found it comforting or terrifying that I knew pretty much what was about to happen to me. My answer then – as now – is a bit of both.

Just like in 2012 I had the same complications – several incidences of atrial fibrillation as well as ileus. I was transferred to Christchurch Public Hospital after nine days so I could be put on TPN while I waited for my ileus to resolve. Eventually it did resolve and I went home, about 15 kg lighter than when I entered hospital. My tumour this time was graded T2-N0-M0 so my incredible luck continued; despite my foolishness the tumour was removed in time and no further treatment is required.

The only difference in Act II is this time I was diagnosed with Lynch Syndrome. Lynch Syndrome is an inherited genetic disposition to various forms of cancer, most notably bowel cancer. Neatly explains why I’ve had bowel cancer twice. Might explain why I’ve had melanoma once. I’m adopted so there were no clues in my family that this was lurking in my chromosomes. My only child passed from complications from Prader-Willi Syndrome twenty years ago so no one is left for me to warn.

What does the future hold? Deja vu. Back to CEA blood tests every 90 days, colonoscopies and CT scans every year, and perhaps screens for other cancers associated with Lynch Syndrome (I’m unclear at this stage what those might be).

My reaction to all this? I’m bemused. At times I am a bit despondent wondering if I’m going to be playing “Whack-A-Mole” for the rest of my life, frantically screening for bowel and other cancers hoping to catch them early while they are still potentially curable. I’m amazed at how well my bowel function is with only ⅓ of my colon remaining and worry about what might happen if that last ⅓ of my colon winds up having to be removed in future.

Other times, I am stoic. I reflect on a comment a doctor friend of mine made. In reaction to my telling her about my diagnosis of Lynch Syndrome she said, “Well 1 out of every 6 people die from cancer. Lynch Syndrome or not, cancer and heart disease are the top two causes of death among older people” (which – being in my 6th decade of life – describes me). She’s not a counsellor (for good reason LOL) but her message made sense to me: Live life the best you can for as long as you can; worry changes nothing.

Bowel Cancer NZ very kindly referred me for counselling. This has been a tremendous help. While I’m still coming to grips with everything that has happened, I’m pretty much back to living my life as I was before. I am neither stoic nor am I crippled by worry (most days….). Usually I worry a bit, sigh, and reckon all I can do is follow my specialist’s advice and not be a fool again and delay any recommended screenings – bowel or otherwise.

I did switch GPs. Again. No particular reason this time; somehow it just felt like the thing to do given the incredible sense of deja vu Bowel Cancer Act II has carried with it.

Now if only the deja vu will continue and give me another 12 years before I’m in serious trouble again…”