INTRODUCTION
RIDER RESILIENCE was born out of the fulfilment Nils Amelinckx got from riding bikes during his incurable cancer journey. Whilst this became the backbone around which this movement was built, it is important for it to focus on the bike as a tool to deal with all types of hardship as a whole, whether that be physical, mental, social etc.
That being said, if someone Google’s say HIPEC, ends up here and is more comfortable going into theatre knowing there’s plenty of good stuff left at the other side, then this detailed page will remain to have served its purpose!
Advanced Bowel Cancer. Stage Four. Incurable.
Those were the words that slowly cut through the haze of the initial diagnosis. At the time, I was just 30 years old and an otherwise fit individual.
I had been to the GP practise on numerous occasions with “red flag” symptoms, but was quickly dismissed given my age and level of fitness. Who was I to question medical expertise? I suppose deep down I knew something wasn’t right. I persevered to get a colonoscopy which - given the fact I was not in a high risk category - carried at least a three month wait. Fortunately, my work provide all employees with private healthcare insurance which helped to get to the root of the problem more quickly: a ping pong ball sized tumour in the sigmoid colon.
Subsequent CT scans showed something “woolly” in my liver. I was quick to dismiss this as scar tissue from a mountain biking injury I had sustained a few years prior. A different scan proved me wrong; this was a cluster of highly active cells and signalled that the disease was advanced - it had spread to other organs.
When the primary tumour was removed through keyhole surgery, the surgeon mentioned off hand that there was some disease in the membrane that lines the abdominal cavity. As I came to learn later on in my journey, peritoneal disease is incredibly difficult to treat and requires an operation called HIPEC to achieve any kind of curative result. I would need to go to a hospital called “The Christie” in Manchester, one of two places in the UK where this procedure is carried out.
Unfortunately, given its invasive nature HIPEC has strict qualifying criteria. Additional disease within other organs tends to rule out this option. My only choice was to go onto palliative chemotherapy and hope for the best.
I started chemotherapy in autumn 2017. Every two weeks, I would get FOLFOX and Cetuximab. FOLFOX consists of Oxaliplatin and Fluorouracil, the latter being administered over the course of 46 hours through a take-home pump. Cetuximab is a targeted treatment which prohibits cancerous cells from dividing.
“Scar tissue is stronger than regular tissue. Realise the strength, move on”
— Henry Rollins
HIPEC. The Mother Of All Surgeries
Although a rare outcome, my chemotherapy treatment regime made the metastasis in the liver disappear completely. It could no longer be seen on scans and I therefore became eligible for HIPEC.
HIPEC surgery consists of two parts - as much disease as possible is removed from the abdominal lining (cytoreductive surgery) after which a high dose of heated chemotherapy is pumped through the abdominal cavity for 60-90 minutes. The whole process takes about 8 hours if all goes well. There is a strong chance you may be fitted with a bag (stoma) as the procedure is so invasive; a perfect souvenir to sit alongside the scar that runs between your pubic bone and sternum. It is a small price to pay if it helps to save your life. My first HIPEC surgery took place in May 2019, followed by a 6 month stint of FOLFOX chemotherapy to try to hit the disease as hard as we possibly could.
In February 2020, a routine CT scan showed a new cluster of liver disease and part of my liver was resected to remove it. Partway through the procedure the liver surgeon ran into an issue and rang my old HIPEC surgeon: the peritoneal disease had returned. Not as a single tumour, but in a “miliary” guise - rather than the membrane being smooth it had become rough as if covered in grains of salt, but the grains being disease. What was he to do? At the time, it was decided to just remove the liver metastisis and to get me earmarked for a second round of HIPEC.
By this point, COVID was rife in the UK and surgeons were somewhat reluctant to operate as it would make me highly vulnerable to this new unknown threat. Although knowing there was uncontrolled disease within the abdominal cavity was rather unnerving, having a break from surgery and chemotherapy was welcomed. I ended up getting my second round of HIPEC in July 2020 in between COVID peaks once the pandemic had settled down a little. That said I was not allowed any visitors for the duration of my stay. I kissed the wife goodbye, and walked into hospital not knowing how I was going to come out two weeks later, with zero face to face interaction with family and friends in between.
Unfortunately, they were unable to remove all disease during the second round of HIPEC as some of it was too far down in the pelvis. It was agreed that once recovered, I would have 5 days of highly targeted radiotherapy in this area to try to remove any remaining rogue cells.
Happy To Come With Baggage
My first round of HIPEC saw me become an “ostomate” - a good chunk of large bowel was removed and the remainder now finished on the outside of my abdomen as a colostomy, into a bag. The prospect of being fitted with a bag worried me more than the surgical procedure itself. I saw it as a life limiting change that in my mind would prevent me from doing the things I love.
When I came round, I remember asking the nurse watching over me on the recovery ward if I had been unlucky enough to get a bag, before anything else. I probably asked the same question multiple times. It took a while to come to terms with it, as it became a daily reminder that things weren’t normal. Prior to this, my good days were good and I could temporarily remove the big C from my life completely. That changed overnight.
As it turns out, having a colostomy is absolutely fine and with some small lifestyle adjustments allows you to live, love and laugh just as you did before. For some people, like those with conditions like irritable bowel syndrome, they can bring no end of relief. To me, it became a small price to pay if it helped to extend my life.
HIPEC round two was slightly more invasive. The remainder of my colon was removed, leaving only small bowel. My bag changed from a colostomy to an ileostomy, which means it was now my small bowel that ended on the outside of my abdomen. Small bowels aren’t great at absorbing fluids, but if you have enough of it can retrain themselves to become more effective at the job. In a normal digestive tract, your large bowel is the equivalent to a spin cycle in a washing machine and reabsorbs salts and fluids that were not absorbed by your small intestine.
As it turns out, my small bowel did relatively well, readapted and the changes were minimal - I could eat and drink as I pleased without too much of an issue.
Fast forward to radiotherapy in autumn 2020. I was warned it would cause a lot of inflammation and may well lead to runnier than normal stools for some time. On day three of my five day course, my gut started making demonic noises and began to cramp up uncontrollably, accompanied by some incredibly runny stools. Initially, this was put down to side effects from radiotherapy. However, things didn’t improve once past the normal side effect period so it became increasingly likely disease and the reduction in bowel elasticity were the root cause of these symptoms. I was to be put back on chemotherapy in order to try to reduce the effects of any disease, with a new treatment regime consisting of FOLFIRI (Irinotecan and 5FU) with Panitumumab given the fact my cell mutation had evolved and become resistant to the original chemotherapy drugs.
Internally Scarred
By April 2021, I had spent countless hours squirming in pain with intense bowel cramping, diarrhoea and occasional bouts of sickness. My hair had begun to fall out and my hand- and feet muscles were repeatedly going into cramp.
I put all my side effects down to my new treatment regime which I had started four months prior, despite my oncologist being less convinced given my relatively moderate dose of chemotherapy.
With district nurses visiting twice every two weeks, they begin to build a rapport with you and form a good picture of your mental and physical state over time. When my district nurse asked me how I really was - obviously questioning my somewhat gaunt look - she documented my condition with a high level of detail. This was the confirmation to my oncologist something was awry, and I was summoned to hospital with an overnight bag for an MOT; some more scans and a few investigative procedures to get to the root cause of the problem.
The initial scan results were inconclusive. My bowel was obviously distended but there were no obvious signs of an obstruction. My HIPEC surgeon was reluctant to “open me up” again. You can do more harm than good and even an “open and close” surgery requires weeks of rehabilitation which, given that time is incredibly precious, isn’t done lightly.
Unbeknown to me, behind the scenes, my oncologist had some heated discussions with the surgeon. Without going in to see what was going on, we were literally at a dead end. We could not continue with treatment and things would only accelerate one way. I was woken in the middle of the night and fitted with an nasogastric (NG) tube, a tube that runs into your stomach via your nose, and interrogated about previous blood transfusions. Theatre was being readied for emergency surgery the very next day.
Surgery revealed that previous stints in theatre and my course of radiotherapy had caused scar tissue and adhesions (where you bowel sticks to scar tissue and can no longer move food along properly). As a result, my gut was partially obstructed and I was not absorbing food properly resulting in weight and hair loss. A lack of vital nutrients was causing my muscles outside of my digestive ones to continuously cramp up. To attempt to resolve this, the affected part of bowel was bypassed rather than removed given that the affected part was largely low down in the pelvis - an area with some disease that should ideally not be disturbed.
As a result, the old ileostomy remains in place although largely inactive and a second loop ileostomy was formed. Overnight, the cramps disappeared and food absorption improved. My hair started to regrow. That being said, I now have around two metres of small bowel left which puts me into a small bowel category which has massive repercussions on your ability to absorb food and fluids.
“He who has a why to live can bear almost any how”
— Friedrich Nietzsche
Seeking Routine and Resilience
As I write this, I am just over five years into my turbulent journey. I have had seven rounds of surgery (including two laparoscopies where they looked around the abdominal cavity with a camera), five rounds of radiotherapy and countless cycles of chemotherapy. I am 14 kg lighter and two arseholes richer.
In August 2022 some severe sciatic-like pain showed that inoperable disease low down in the pelvis had progressed and started putting pressure on some nerves in both leg and lower back, making riding bikes quite difficult. The medical team’s aim is now to control disease for as long as possible whilst keeping a keen eye on quality of life. The unfortunate reality is that we’re now likely talking in months rather than years.
A curative pin prick of light and hope at the end of the endless tunnel has unfortunately largely faded, but we look to settle into the routine of treatment and to plan for some good times in between.
My aim is to keep having adventures for as long as possible, and to find resilience by doing so. I want to share my story to inspire others to live their lives to the fullest, and to turn to two wheels or whatever you love to find solace through times of hardship. I want to pull similar stories of resilience together to act as a resource from which people can draw strength, and hope to leave a legacy of inspiration by doing so.
If you find yourself in the “C club” nobody wants to be part of, or worse still faced with a similar death sentence to me, please feel free to reach out. It can be a lonely journey and I will delighted to share any resilience I can muster.
Most of all, stay strong and make the most of every day. After all, life should not be an expression of the amount of breaths we take but of the moments that take our breath away.
Nils - Founder