In May 2019, I was diagnosed with stage 3 bowel cancer - T3N1M0 for those in the know. It was in my rectum and about 5 cm from my sphincter. The day I was diagnosed was memorable for two reasons.
One, I was completely conscious during my first colonoscopy - not something I would recommend, always get knocked out :).
And secondly, like a lot of the stories I’ve read, I was a very healthy 36-year-old who exercised all the time, ate healthily and didn’t have a family history of colon cancer. It was just luck of the draw.
I didn’t waste time thinking, ‘why me?’. My reaction was, ‘well what do I have to do to get better?’ (with a lot of crying between the diagnosis and treatment plan).
Symptoms and Diagnosis
I was living in London at the time and I got a colonoscopy about 2 months after I started to see some blood in my stool. Looking back, I probably should have seen a GP earlier, as the first main symptom was bloating and mucus in my stools (about 3 months prior).
I would go to the bathroom, fart a lot and there would be a bit of mucus when I wiped. I thought it was strange but I also thought it would go away and that it was possibly just a food allergy of some sort.
Unfortunately, it didn’t go away and I then started to see blood in the mucus (fresh red blood) and also dark blood mixed in with my stools. This prompted me to go to the GP and get checked. After being diagnosed in the UK, we moved back to Australia within a month and started treatment as soon as we arrived.
Phase 1 - Radiation and a small amount of Chemo (5FU).
My routine was radiation Mon-Fri for 6 weeks whilst having a small chemo bottle attached to my chest 24/7.
This included the installation of a port-a-cath in my chest, which, looking back, is one of the best medical devices. It sounds scary having something in your chest, but it’s minor surgery to have it installed and you don’t even notice it after a few days. It also saves your arms from getting needles all the time. I had it in for 10 months and it was removed in May 2020 at the end of my treatment.
Phase 2 - Surgery?
After Phase 1, we did a number of checks (MRI, colonoscopy, blood tests) and there wasn’t any sign of the cancer. This is something called a ‘Clinical Complete Response’ (CCR). It happens in roughly 15% of patients. Because of this, my wife and I did some research and decided to opt for a non-surgery approach called “Watch & Wait”.
Basically, I’ll have regular check-ups for now and if the cancer comes back in the same location, I’ll need to go straight to surgery. It’s a new approach and non-standard - something you don’t want to take lightly and you’ll want to understand all the associated risks.
Phase 3 - Full on chemo (FOLFOX).
Even though I didn’t have surgery, it was recommended that I still go through a stronger chemo phase. The treatment consisted of 2-week cycles. The chemo was administered on Monday at the hospital, and then I would leave with a bottle of 5FU attached to my body (the same as in phase 1). The only difference was that this bottle only had a 46-hour dosage, so I came back to the hospital on Wednesday to detach. Then, I would have about 1.5 weeks to recover before doing this process again.
I completed 8 cycles in total with a few gaps in between because of low white blood cells. Every treatment plan is different, but for me, they checked my blood levels before each cycle. If one of my levels was too low, they either gave me a week off or gave me an “immune booster” injection - which you do yourself at home a few days after the chemo is administered.
Honestly, having a few weeks off between cycles 5-6 and 6-7 was great. I needed the time to get back to ‘normal’. I didn’t realize how low energy or tired I was until I had 2 weeks off during the cycles.
Right now I’m feeling great again (June 2020).
I’ve gone for a colonoscopy and there is still no sign of the cancer. I will have colonoscopies every 4-6months and will do so for the next few years, as this is a high-risk time for recurrence. So, I’m still in the process and am focused on my health. I’m actually stronger right now than I was before cancer.
If you are reading this because you were recently diagnosed, I’ll try to provide some pro-tips.
Clear out the closest of any emotional baggage you may have prior to treatment.
Why? You are going to need all your energy, strength and focus during the treatment. Don't waste energy on other areas. If you don’t know how to do this, see a professional/ psychologist. I was provided with one during my treatment and it was very beneficial. I still talk to her to this day.
Routine is vital.
This includes all the things you’ve previously done regularly, but also includes new things that you should start doing. Parts of your routine may include things like exercise, nutrition, meditation, nature walks, journaling, podcasts. You should create a good routine for all of these because there will be days when you don’t feel like doing anything, but if you have a routine in place, you will still be motivated to do them and it will pay off in the long term. For example, during my last phase of chemo I would go to the park and go running after I got disconnected every Wednesday. Obviously by cycle 8 I wasn’t doing 5km around the oval (more like 2 laps) but I still went to the oval and did a bit of exercise. It was part of my routine even though I didn’t always feel like doing it.
Get better in some way - not associated with the cancer.
One of my goals going into the treatment was to be better in some way which had nothing to do with the cancer. This was so I could look back and say, wow I'm stronger than before. For me, my goal was to come back stronger. I had very mild scoliosis (curvature of the back) and I wanted to have a straighter back by the time treatment was over. I started to see an Osteo about this and over the course of 10 months continued to work on it. I can now say my back is straighter and stronger than ever.
For you, it may have nothing to do with your physical self. Maybe it’s something like learning a new language? Though that can be quite tough when you have chemo brain. Or maybe it’s that vegetable garden you always wanted to plant out back? It doesn’t really matter what it is, but it’s just important to have something else to work on which isn’t related to cancer.
Overall, I’m now in a stronger position that I was prior to cancer. I’m more emotionally aware. I’m physically stronger than before - through focusing on nutrition (pescatarian now), exercise and getting my back sorted. I’m also a lot more grateful and appreciative of many things. I’m not sure I have any inspirational quotes for you, but I can say we humans grow the most during challenging times. See this diagnosis and treatment as a way to grow in some way. It may be emotional - I’ve cried more in the last year than all my life combined - but that’s fine and actually healthy. We don’t know what the future holds but we can control what we do today.
If you made it this far congrats. If you want to really see my journey - crying and all - check out https://www.youtube.com/joelytime. It should hopefully provide you with insights like what does radiation actually look like. What is a port-a-cath and what will it look like in my chest? What do you look like after 7 cycles of chemo? etc.
Thanks again for reading.