25
Jan
2017

Steve P's bowel cancer story (diagnosed age 37, VIC)

I was diagnosed with bowel cancer in late 2014, at the age of 37.  I had experienced mid-day fatigue the year prior, which I attributed to job dissatisfaction. I also had the occasional feeling of nausea and random severe stomach pains, which I thought was a dairy intolerance.

I remember one day, I ended up doubled over in pain on the floor. When I could get up, I would run to the toilet. This happened every hour for about 12 hours, then everything was fine for about a week or two.

My bowel habits started to become irregular and my appetite was waning. At first it was thought this was a reaction to diet, or a change to my asthma medication. I had serious constipation at one point, not having gone to the toilet for about 8 days. I had a stool sample taken which came back negative for blood. Laxatives were used to get me going, at which point there was some blood in the stool, but this was attributed to local external trauma rather than internal.

By mid-2014, my appetite had reduced to the point where I couldn’t finish a small meal and I had started to lose weight. My wife Katie insisted that I go back to the doctor who recommended that we book a colonoscopy to “rule out the worst”.

I knew it was serious afterwards, when the doctor advised me not to go to my brother’s wedding in the UK the following week. They said they had found a 12cm growth that was taking up 70% diameter of the intestine. That explained the constipation. A biopsy was sent off for testing, and I was referred to a colorectal surgeon.

I went home and Googled bowel cancer and after about 30 minutes of reading ended up a quivering ball in the corner. It was then that my wife transformed into my own personal medical consultant. She read up on it all and would relay the relevant information without any horrific details so that I could cope. She was the one who asked the questions at all the appointments and took a note of what was to happen when. In fact, she should have been the one to write this. I was just trying to get through it.

Two of the longest weeks of my life ended with a visit to my colorectal surgeon, who gently confirmed it was cancer. The staging took a little longer. After a CT, it looked to be stage 4. There was a shadow on the liver, but a further MRI and ultrasound confirmed that the tumour had only penetrated the bowel wall on its way to the lymph nodes and gone no further. Phew.

My oncologist had an ever-evolving treatment plan which included the latest and greatest treatments. Firstly, I had a chemotherapy canister attached via a tube through my arm. This was worn permanently for 6 weeks and changed every week. During this time, I also had radiotherapy 5 days a week. I barely noticed any effects from the chemotherapy. Going to radiotherapy was easy as the staff were so lovely and there was always someone there more worse off than I, which helped to keep things in perspective. It was also cool to get my first tattoos, 4 tiny dots to position the radio therapy lasers. As I lay under the machines for the 5 minutes of treatment, which didn’t hurt at all, I would envision the tumour getting smaller and smaller. The last two weeks of radio and a week or two after were extremely painful at the toilet due to what I call “crispy butt” or radiation dryness.

I had close to a month off after this first round of treatment where I almost forgot about what was going on. I was lucky enough to enjoy Xmas without any treatment or side-effects. It was also really helpful to have a comedian mate who was just blunt about it all. He called me cancer-boy and ask how my “kanker” was going and the like. Although this might seem insensitive to some, it was helpful in allowing us to come to terms with our situation and address it face on. It also allowed us to take a more positive attitude. By owning the word “cancer” and using it freely helped to remove some of the fear and lessen the impact of the word.

We were lucky the cancer was caught early and was therefore treatable. We were lucky it was stage 3 not stage 4. We were lucky that I was young and strong enough to deal with the treatment and that I was able to have some flexibility with work.

I had an ultralow anterior resection via keyhole surgery at the start of 2015 to remove the tumour and place a temporary ileostomy and bag. This would have been the worst part psychologically as there’s a fair bit of maintenance involved. You have to clean up an unpredictable stoma on your abdomen. It’s fascinating really. You can go about your day without anyone noticing you’re wearing a bag but when it needs emptying in public places you get to be really critical of public restroom facilities.

Unfortunately, I developed an infection after the surgery which pressed on a nerve connected to the genitals which I can only describe as the most enduringly painful thing I’ve experienced in my entire life. A week after my first operation I ended up back in hospital for 8 days until the infection was found and monitored. I had a tube in place through my butt-cheek connected to a draining bag which I wore for about 5 weeks during which time I couldn’t sleep on my back or sit straight and had to navigate a cornucopia of pain medication.

I was lecturing during this time and had strange noises emanating from my stoma and would have to time my pain meds so that I could focus on the students, then space-out over lunchtime and re-focus in the afternoon. This was by far the worst part of the whole experience. If it weren’t for the infection the medical part of the cancer treatment would have been relatively straight forward. Thankfully, as the pain subsided, so did the dependence on pain medication, so I was soon free and clear for the next step.

By mid-2015 I was fit enough to withstand a secondary and stronger round of chemotherapy. This time it was 8 weeks of chemotherapy pills and fortnightly infusions. It was during this treatment that the neuropathy kicked in and provided some interesting side-effects; loss of appetite and taste, I developed a penchant for sour lollies to make myself feel better. My throat would feel like it was closing if I had any cold drinks, so I would drink copious amounts of tea and hot cordial. My recommendation is to choose your second favourite flavour as you might not want to drink that tea again when you’ve recovered.

My feet and fingers were very sensitive and would instantly develop painful pins-and needles if exposed to the cold, so I would wear gloves and slippers. My infusions were on Mondays and fatigue would increase until I was completely useless by the Friday. Thankfully I had a comfy sofa and Netflix to get me through the day. I would feel better with rest over the weekend and benefit greatly from the following week off.

I would have significant pain on infusion day in that arm which was remedied by a heat pack. A strange one I developed for about a year after the chemo was a kind of electric shock from my feet up my spine to the base of my skull whenever I looked down. I kept all my hair though, so that was nice. My brother is jealous because he lost all his in his twenties.

The final hurdle was the stoma reversal in late 2015. There was a minor complication where it was not possible to do key-hole surgery, which was a shame considering how neatly my first surgeon had done the job. The new scar tissue is a friendly daily reminder that I’m stronger than I think I am. The recovery for this last surgery was pretty good and I was already feeling close to my old self after a couple of weeks. The most difficult part was getting my bowels working after the operation where I didn’t go for 5 days then suddenly needed to go hurriedly and repeatedly for 2 or 3 days after that.

I have been given regular checks and a colonoscopy since, which has been “all clear” and I am grateful every day for being given a second chance. Occasionally I struggle with the idea of having to live up to that. I think ultimately, you’re still alive so you tend to enjoy life more but there’s no need for the added pressure.

Life after the experience has been relatively normal, but with more toilet visits. I tend to forget it even happened until I hear the word “cancer” or go to the loo.  The year or so after my final operation I had a different bowel habit every couple of weeks. Now I’m trying to be more conscious of my diet and trying out different approaches to have a more normal regularity. I can’t hold as much food or drink as I used to, which is probably a good thing. The need to urinate comes on suddenly and there’s still a minor ache every time I go, but that’s nothing in the scheme of things.

It’s taken me a lot longer than I thought to come to terms with what we’ve been through. The first year I was still recovering, second year I was in denial and trying to get on with my life, in my third year out now I am finally getting to process things. Writing it all out like this has already helped me enormously.

The whole process was hard for my wife and I to go through. Not only did she have to deal with it all herself while pregnant, but she also cared for me while working a full-time job. I was the one unconscious during operations and high on painkillers, she was the one who was fully awake and worrying while I was under and made sure I was taking the correct meds at the right time. I didn’t fight off cancer, I just survived thanks to the beauty of medicine and the hard work of my other half. We took things one hurdle at a time. It’s best not to try to take it all in at once, as that can be too overwhelming, and there are far too many what-ifs along the way.

My wife will forever be my hero and I have nothing but the highest respect and gratitude for the surgeons and teams of doctors and nurses who looked after me. I am also grateful for Bowel Cancer Australia, who have been so helpful and for putting me in touch with a couple of people who have also gone through this.

It has been a huge relief to know that others have been through similar experiences and to be able to reach out to them. I wish I had joined the peer-to-peer network at the beginning, before it all began, so that I could talk to others who’d been through it and see how well they are doing.

My advice to others is this: If you notice your bowel habits changing significantly and it can’t be easily explained, if you see blood in the toilet, or have appetite or weight changes over the space of a few weeks, insist on a colonoscopy. Don’t be afraid, it literally doesn’t hurt to check. There can be a better chance of successful recovery if caught early enough.

Timeline:

2013 (All year) – Growing uneasiness
2014 (Start)– Pain and irregular bowel habits.
2014 (Late)– Diagnosis
2014 (End) – Radiotherapy and Chemotherapy
2015 (Start) – Tumour removed
2015 (Mid) – More Chemo and Stoma
2015 (Late) – Stoma reversal
2016 – All clear

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