JOHN’S STORY

In June 2019, shortly after turning 50, I was diagnosed with colorectal cancer, and I didn’t realize the roller-coaster ride that I was about to undergo. After a routine colonoscopy – no symptoms, no family history of cancer – they discovered a rectal mass. The mass turned out to be a cancerous tumour – equivalent to stage 3 – and there was also a concern that the cancer could spread through adjacent lymph nodes. I was gob smacked. I was – and still am – a perfectly healthy individual, highly energetic with numerous physical activities. Suddenly they were talking about surgery, removing my rectum, and leaving me with a colostomy since the tumour was situated very low. I went into a mental tailspin as I contemplated what life might be like with a ‘pouch’ – or worse – and had some very dark days. 

To make the tumour more operable, I underwent chemo-radiation, and experienced the common side effects including difficulty sitting and carrying a special type of pillow to sit on at meetings. When the radiation had run its course, the treatment was so effective that it had eliminated the tumour, at least visibly! The surgeon was cautiously optimistic, and I went on a program of frequent ‘monitoring’ – scans every three months – but it looked like I might be able to avoid the dreaded surgery.

During the first scan, the surgeon performed a biopsy of the area and when he shared the results, they were not entirely favourable. The area contained ‘dysplastic’ (on the verge of becoming cancerous) cells so to be cautious I underwent intravenous chemo for six cycles. I had many of the side effects common to chemo, including nausea, fatigue, neuropathy, painful ‘first bites’ but I survived and still considered myself fortunate to make it through in one piece.

During a more recent scan last summer, the surgeon performed another biopsy and this time full-blown cancerous cells were detected. No doubt now – I had to have the surgery. The rectum had to go. Another period of blackness – and uncertainty. It was only on the morning of the surgery, as they were about to administer the anesthetic, that the surgeon informed me that he would be able to preserve anal function and the ostomy would be temporary.

After the first surgery, to remove my rectum, the surgeon told me he had achieved ‘healthy margins’ and even all the surrounding lymph nodes – he extracted thirteen – tested negative. What a relief! Although the ileostomy was cumbersome (‘high maintenance’ would be a good word for it), I looked forward to reversal – and resuming a normal life.

But after the second surgery to reconnect the plumbing I came to realize my bowel function was severely compromised since the tumour was so low in the rectum. I was going to the toilet 50 times (or more) during the day, and gradually understood that I have Low Anterior Resection Syndrome (LARS). I had difficulty leaving the house for any period. My wife and I went shopping one Saturday afternoon and it proved to be disastrous; I had to run to the washroom about 6 times in the span of an hour. Even doing an errand as simple as going to get pizza ran the risk of ‘going’ in the car. The months of November and December were some of the blackest I have ever experienced. I was so frustrated I would cry, yell at my wife, and had some very dark thoughts. Filomena, bless her soul, was willing to make time for me and helped ‘talk me off the ledge’ a couple of times.

In January, I started using the Coloplast Peristeen system, and it has been a game-changer. I use it once a day, every morning, and since it allows you to deliver a ‘super enema’ you clean out a large section of your colon and don’t have to go for a very long time. So far – and it is early days – the results of using it have been highly favorable – half the time I can go all day (and all night) without having any output, the other half I go once (and only once!) about an hour or so after dinner. I am going shopping again with my wife – the highlight of our week during this lockdown! And I have returned to work (from home in this pandemic), able to concentrate fully and meet the challenges and stresses of my executive job head-on.

I don’t know what the future will hold – as I write this I am scheduled for another ‘checkpoint’ colonoscopy in a couple of weeks – but thus far I have been able to resume my life, continue my job, and maintain the stable and positive mental outlook which I have held for so long. I hope to remain cancer-free for many more years to come, and of course, am grateful that support groups such as CCRAN exist and flourish in the community.