I was diagnosed in October 2015, at the age of 33. In the space of 2 weeks I had a colonoscopy, then CT and MRI scans, which resulted in a clinical diagnosis of Stage 3 Rectal Cancer, due to some lymph nodes appearing to be ‘involved’ on the scans.
I had been experiencing a variety of symptoms in the months leading up to my diagnosis, but the main one was rectal bleeding. I saw my GP who gave me a referral on the spot to a colorectal surgeon, as well as some advice about dietary changes which could have been the cause.
Unfortunately for me, those symptoms disappeared for a time, before returning and then disappearing, and could always be put down to something else. It wasn’t until the bleeding got worse and wouldn’t go away that I attended on that referral. I also felt tired and noticed that I had lost some weight and a blood test revealed that my iron levels were extremely low.
I had a colonoscopy the following week and my surgeon told me that he had found a ‘lesion’ and that it would take a week for the pathology results. I snuck a look at the photos taken during the colonoscopy and even in my anaesthetised haze, knew that it was bad news.
After that I had CT and MRI for staging which revealed that there appeared to be some lymph node involvement, but that fortunately, there was no evidence of distant metastasis.
My surgeon originally told me that I would be having a short course of chemoradiation and then surgery, which was scheduled for mid-November. Upon meeting my radiation oncologist, I was informed that my case had been presented to a multidisciplinary meeting and that the consensus was that they would adopt a long term, very aggressive approach to treatment, working on the assumption that the cancer had already metastasised, and that it was simply too small to be detected on scans yet.
As a result, I had a portacath installed on a Thursday, and started chemotherapy the following Monday. Prior to surgery I had 25 rounds of chemoradiation over two blocks, which was interspersed with three rounds of chemotherapy.
In March 2016, I had an ultralow anterior resection with the formation of a temporary ileostomy. I was in hospital for just under a week, and other than suffering an overdose on morphine, my recovery was smooth sailing. Pathology revealed no cancer cells in either the specimen of bowel removed, or the lymph nodes, a complete pathological response.
In April 2016, I had another series of scans which revealed no metastasis, and then recommenced chemotherapy, having it every fortnight for a total of nine rounds. I eventually finished my adjuvant chemotherapy in late August.
In July 2016 I was released by my radiation oncologist who advised that I was in remission and had been since my surgery. He advised that my complete response was great news prognostically and that the cancer was unlikely to come back.
Hearing that news, only 7 months after being told that I had Stage 3 cancer and research telling me that the statistics were against me, was the most wonderful news I’d heard. It made all the nausea, neuropathy and fatigue worthwhile.
By and large I had it pretty easy during treatment. I adopted the approach that I was going to learn as much as possible about the various aspects of my treatment, and the disease itself, so that I was (1) able to ask appropriate questions of my various doctors; and (2) able to prepare myself for each treatment.
By adopting that approach, I found the whole process incredibly liberating and interesting. It is incredible to think that you can have a foreign object implanted in your chest, which is a direct line to your heart. The first time I saw the linear accelerator that was to deliver my radiation I was in complete awe. Watching various procedures in ‘real time’ is absolutely astonishing and is a testament to doctors and health professionals.
I had one really bad round of chemotherapy, which was my first one back after surgery. I think because my first three rounds were so easy, I got complacent and expected the remaining nine to be the same. How wrong I was. I lost a huge amount of weight through diarrhoea and was pretty much bedridden for the better part of a week. At the time I wondered whether it was worth continuing if the next eight rounds were going to be the same but I remembered on my first infusion a woman was stopping her treatment early due to the side effects and I told my wife that I would never do that.
She and my daughter were worth six months of fortnightly misery if it meant I got years longer with them. My dosage was reduced and the remainder of my infusions went off without a hitch.
My main side effects from both the chemoradiation and chemotherapy was fatigue, and at times it was extreme. It would hit me 2 days after I was disconnected from my chemo pump and I would be useless for between 24-48hrs. That said however, I continued working full time during treatment, only taking time off for surgery, and every second Monday when I had to go to the infusion centre. For me, keeping busy made it seem like it was ‘business as usual’, even though it was anything but.
I finished all active treatment in later August 2016. I had my first lot of surveillance scans in December 2016 which was eight months since my last ones. Being the anxious person I am, I compared them to my previous scans and was relieved that, to my untrained eye at least, I couldn’t see any discernable difference between them. My oncologist called me the following day to put my mind at ease and confirmed that the scans were normal. My next scan is in June 2017.
I see my doctors every three months for blood tests and have scans every 6 months for 2 years at least. The protocol is for scans every 12 months but I have anxiety and negotiated with my oncologist to have them a little more regularly, at least at first.
I had my ileostomy reversed in mid February 2017, and fortunately my recovery has been pretty uneventful. My wound is almost completely healed and today I went for my first swim in over 12 months. My plumbing is much better than I expected it would be and even if this is as good as it gets, I can definitely live with it.
As a result of having bowel cancer I came to realise that I’m much stronger than I thought I was. While undergoing treatment I dealt with my mother being terminally ill with a neurological condition such that she was completely reliant on my father as her carer. That meant that, as silly as it sounds, when all you want is your mum, I couldn’t have that. She passed away the week after I finished chemotherapy, and my grandmother a month after that, which added to an already difficult year. Fortunately, my mum was the first person I told when I heard I was in remission and so in that sense, she got to see that I was on the right track.
Another thing I found out was how strong my wife was. I am certain that I would not have been able to achieve the same results without her support. She attended appointments and treatments with me, while working and looking after our (now) 3yo daughter, who inherited her mother’s looks, and my tornado-esque personality. She was a rock and I am looking forward to the holiday we have booked later in the year so that she can put her feet up and really relax for the first time in a long time.
My advice to others is to listen to your body. Bowel cancer is known as the silent killer, often resulting in it being diagnosed at an advanced stage. If something doesn’t seem right and persists for more than a week, get it checked. Don’t let embarrassment cost you your life.
The other thing is that it is not an old person’s disease. This year a fellow the same age as me died from bowel cancer and there is at least another 3 people in my city (that I know of) who are around the same age and have been diagnosed.