Hello everyone, I’m a 37 year old male and this is my first post on the Macmillan Online Community. I want to share with you all my near 10 year journey from cancer diagnosis, through surgery, to remission, in the hopes that some of what I say below will provide useful information for any concerns you may have (feel free to ask me any questions, any time). It all properly started in 2016 when I was 28 years old.
I first started to notice the classic symptoms of bleeding whenever I wiped after going to the toilet. This was quite infrequent and I tended to ignore it most of the time, assuming it was down to poor diet and lifestyle (this was actually two years prior to things kicking off, when I was 26 years old). Over time it was visible slightly more often, so I headed to the GP to get checked out. At the time, I was advised to improve my diet and lifestyle, keep an eye on it and return if the symptoms remained/increased. But alas, I ignored that and carried on with my life. Fast forward two years later, and the bleeding is much more frequent than before. Aside from the bleeding, I didn’t really have any other symptoms, I felt totally fine within myself. I eventually return to the GP, who after a quick finger up inside me, referred me to have a colonoscopy. This scan showed up clear as day on the monitor, a large tumour growing inside my colon. I didn’t really know what to think at the time, I was numb to the whole process. While the imaging was clear, further tests were conducted (MRI, CT, bloods) to ascertain the full extents. Then, a short while later, sometime in April 2016, I was officially diagnosed with stage 2 rectal cancer, T4 N0 M0 (at the start of the diagnosis meeting, the surgeon asked to give me a quick examination with the finger up inside me, where he proceeded to ask, “do you have a family history of bowel cancer” – I didn’t, but I now knew what he was about to tell me!). I didn’t really react to it, I wasn’t upset, nor did I cry (my partner at the time was more upset, it’s almost more difficult for people who don’t have it when they can’t do anything to help), I just continued to be numb to it all. I was then later informed that I would need to start treatment to get rid of it soon. Needless to say, I got rather drunk that night.
For a while afterwards, I was starting to dread the end result of what typically comes out of this kind of treatment and surgery, a permanent stoma. I started to research into many other options, based on other stories from around the world. I vastly improved my nutrition (I religiously ate the ‘Budwig diet/protocol', cut out anything damaging, etc.), exercised a lot more (I dropped a stone in weight down to 12st 5lbs during this month following diagnosis) and reviewed other alternatives. All of these things were good for my overall health, but ultimately I would never have any idea if any of this would work. No cancers are all the same, so any miraculous treatment for one cancer, won’t work on another. So while I may have given myself some false hope, at least I still improved my health during this time. I was reluctant to go ahead, but I had no choice.
I was put on a course of roughly 2 weeks of daily radiotherapy, alongside 4 weeks of chemotherapy medication which I believe was capecitabine (I was lucky to not have to receive the infusion also). During this month, I felt pretty rubbish and weak, where I lost another stone in weight due to barely eating (I did a few times vapourise some cannabis to help me eat – this definitely helped but is obviously illegal), which made me look a bit gaunt. I was relieved when it was over that my appetite came back. I experienced no hair loss, as I’ve been told that this only tends to affect cancers from the lung/breast and upward. The treatment had reduced the size of the tumour, but unfortunately it had just touched my prostate and bladder (very fortunate that these weren’t metastatic). I was told that the male anatomy is very compacted down below with a higher risk of tumour spreading, whereas female anatomy is more spread out. I was then told that the only option would be surgery to remove the tumour and affected organs, leaving me with two stomas. I got rather drunk again that night.
I wasn’t feeling particularly content with the way the surgeons were dealing with me at my local hospital at the time, so I decided to seek a second opinion. My partner at the time’s mother did a wonderful job of seeking out quite literally the best colorectal surgeon out there, at the Royal Marsden hospital. While trying to seek an appointment through the NHS would have been likely a long delay, I opted to pay for a private appointment to fast track the process (from what I recall, this cost several hundred pounds to cover any potential scans required the same day – these weren’t needed in the end so the cost was reduced). The new surgeon was excellent, very approachable yet told it as it is. He put me at ease explaining the full extents of the situation, that surgery was indeed the only option. However, he proposed an option for me to not receive two stomas, but one combined stoma, also known as a Carter stoma or double barrel wet colostomy. Such a procedure had only been carried out on around 50 or so patients at the hospital prior, so it was very much experimental at the time. I figured, I would still go to the toilet the same amount of time as if I were to have two stomas, but one stoma would be much more discreet. I officially moved my treatment to the Royal Marsden on the NHS.
Then came the big day, in December 2016. It was time to go under the knife for a 10 hour total pelvic exenteration operation, to remove my rectum, sphincter (I now have the famous ‘Ken’ bum), bladder and prostate (potentially to increase to 12 hours depending on what they found when they opened me up). I was told that I wasn’t guaranteed to wake up with just the one stoma, as it would depend on what they would find when they cut me open, so this felt daunting. I walked into the operating theatre (the room before it to be precise), where I had an epidural put into my spine and I was sent asleep. A short while later, in my mind at least, I gradually woke up in ICU, to find that the operation had been successful and I indeed had the one combined stoma. Unfortunately, a tube that went from my nose into my stomach to collect bile had got twisted when they removed my breathing tube after the surgery, so I had to have this removed and a new one put in while I was awake, not a nice experience! I spent a few days in the ICU, where I was then transferred into a normal ward, residing there for 2 weeks in total. I was mostly bed bound, feeling very weak (my first day getting out of the bed, I walked to the end of the corridor and was knackered!). But the nurses, doctors and staff there were amazing and looked after me perfectly. I recall having the epidural in my spine for a week or so (with fentanyl pain killers – absolutely no head rush effects as I had plenty of pain for these pain killers to target!), a tube in my bum cheek to collect fluid for a week or so, the aforementioned tube up my nose for a week, two stent tubes from my kidneys through the urinary tract in the stoma, and a tube in a main vein in my neck which had 4 attachments on, to give me nutrition and whatnot (I didn’t eat any food for the first week, as my body got used to the new setup). Oh, and a total of 45 staples going down my stomach. These were very nasty to remove after the two weeks as the skin had healed around them! Over time I slowly got my strength back, where I could walk further in the hospital, right up to being able to go outside the day before I left. I used this time in hospital to relax as much as possible, there was no point in trying to be stubborn and get out of it early.
I left the hospital a short time before Christmas that year, to begin the rest of my life as a new me. It took a long time to recover, I had to take it very slowly and make sure I didn’t give myself a hernia, which is more likely now due to the surgery I had. Exercise wise, I very slowly started with yoga, to get some flexibility back in me, to gradually stretch muscles and not apply too much force. Getting used to having a colostomy bag took time, with a lot of frustrating moments of remembering when I could use my old body as normal, experiencing different leaks at different times. It was a lot of mental strain. Within the first year of recovery, I also experienced two kidney/urinary infections, which I was told to expect due to the type of surgery (these were easily cleared up with medication, but it was painful at the time).
Another important thing to mention is that this surgery severed nerves that supplied blood flow to my penis, resulting in me never being able to achieve a natural erection again (I still have feeling/sensation otherwise). In addition, I had to provide sperm to freeze as I effectively had a vasectomy carried out. For those wondering, the options provided to gain an erection are: pills (didn’t work), penis pump (the ring you have to wear is agony), an injection directly into the shaft (nope!) and the permanent option, a penile implant surgery. I opted for the latter, which was done roughly a year afterwards at another hospital. That was a painful recovery, but all healed up fine in the end after a few weeks.
So, where am I at now? This coming December I will be 9 years post surgery, with no signs of it returning (I’ve been told that 2 years post surgery with no signs is good, 5 years is even better, anything above that is gold). I went for MRI scans for 4 years, still doing CT scans (last one will be next year) and doing a colonoscopy every other year for the rest of my life. I’m arguably the fittest and healthiest I’ve ever been as I’ve paid more attention to my diet and exercise. I’m happily married to a new partner that gives me reason to live. I look back on the whole experience as somewhat of a blip on the radar. But every now and then I do get frustrated having the bag, even though it saved my life. I think this is normal. You learn to deal with it and move on with life.
