A Timeline of my Journey so far

FEBRUARY 2020: I receive a colonoscopy following abdominal pain and passing blood. It indicates that I have cancer. I'll receive staging shortly, but the colonoscopist says it 'can be treated'. She says the tumour looks to be around 2.5-3cm in diametre.

MARCH 2020: Following scans, I'm diagnosed with Stage 3/Dukes C rectal cancer. The primary tumour is just over 5cm in diametre (bigger than expected) and nearby lymph nodes have been affected. There is approximately a 60% 5 year survival rate according to my consultant.

APR - JUN 2020: Oral Capecitabine chemotherapy & photon beam radiotherapy received daily over 6 weeks. The aim is to shrink the primary tumour & regional lymph nodes to make surgery more manageable. The main side effects are nausea and fatigue. I spend much of my time in bed towards the end of the 6 weeks. I'm also beginning to experience intermittently severe back pain and am prescribed various opiates to manage it that have little effect.

JULY 2020: CT, MRI & PET scans reveal lymph nodes in the radioactive field have reduced in size as planned, and the primary tumour has remained stable.

However, there is widespread lymph node metastases with a BRAFV600E mutation found. Staging changed to Stage 4/Dukes D. My consultant says surgery is no longer in my best interests and will not present as a possibility in the future. I receive a very bleak prognosis: if I respond to Folfirinox chemotherapy, I should expect to live 9-12 months. If I don't, I should expect to live 6 months. 60% of people respond to this chemotherapy regimen.

AUG - NOV 2020: I'm referred to the palliative care team at St Gemma's Hospice. 12 cycles of Folfirinox are scheduled. Following a huge amount of independent research, and against my consultant’s advice, I also begin an intensive integrative regimen* of supplementation, organic whole food, green smoothies and juices, meditation, visualisation, exercise, breathing exercises, hyperbaric oxygen, infrared saunas and PEMF therapy.

NOV 2020: CT scan reveals a partial response: My primary tumour is stable, and there is some reduction in the size of the affected lymph nodes. However, I've been experiencing severe side effects from Folfirinox including kidney pain, vomiting and nausea, migraines, heart palpitations, rashes, hair thinning, shortness of breath, fatigue, depression and neuropathy. We agree to have a break after 8 cycles until the cancer becomes active and starts to grow again. I'm informed that 50% of patients’ cancer becomes active within 12 weeks of completing the 12 week course. I continue my integrative regimen.

JAN 2021: Scans show stability. Integrative regimen continued. I begin developing late-onset peripheral neuropathy in my fingers and feet.

MAR 2021: Scans show stability. Integrative regimen continued. The peripheral neuropathy has become severe. Walking is now very painful: the sensation varies from a feeling of pins and needles, to electric shocks to a burning pain.

MAY 2021: Scans show stability. Integrative regimen continued. My consultant decides to reassess my case and brings it to his MDT (multi-disciplinary team) due to the unexpected stability of my cancer. It has not progressed as expected and he wants to explore what further interventions might now present as a possibility.

JUNE 2021: I'm referred to a surgeon who says he is willing to operate. This despite being told 11 months ago that surgery would remain an impossibility. He says that it will be ‘massive’ open surgery, and that he wouldn't put my body through it if he didn't think it could be curative. It's a relatively rare surgery to receive, and there is no body of data from which a meaningful prognosis can be drawn.

JULY 2021: I receive open surgery. The primary tumour is removed; 19 metastatic tumours are removed; lymph nodes are stripped of the central vein and artery running down the centre of my body; nerve tissue is removed and a temporary ileostomy is fitted. It is a 'low join' and 95% of my rectum has been removed, so they will have to test how it has healed in 6 months to determine whether or not it can be reversed. My prognosis is deemed 'unclear' at this point, but survival is mooted as a possibility. I spend over three weeks in hospital and a further three months at home during an acutely painful, traumatic recovery.

SEP 2021: First scans post-surgery show stability. Integrative regimen continued. A lot of back pain, and my ileostomy is overactive and difficult to manage.

NOV 2021: Scans show stability. Integrative regimen continued. Quite a lot of post-surgery pain in my back. I exercise when I can but am intermittently bed bound. The ileostomy has settled and is now manageable.

The neuropathy has remained very difficult throughout, and I have tried a number of orthodox and integrative regimens to no avail. I travel to Italy to try Scrambler Therapy. The treatment lasts one hour a day and I have ten sessions over two weeks. I have a 60%+ reduction in neuropathic pain.

The ileostomy is becoming increasingly manageable; on average, I empty it 4/5 times a day and twice in the night.

FEB 2022: CEA blood test reveals a level of 2 (below anything that indicates a concern and the necessity of a scan). The back pain has decreased significantly and now only arises with prolonged periods of sitting. Neuropathic pain stable; still 60%+ better than pre-scrambler therapy. Next scan scheduled for June 2022. Integrative regimen continued.

JULY 2022

Scans show stability. Just about a year past my life expectancy. Working full-time and leading something resembling a normal life. Scans to be annual now. I always said that the one year mark post-'expiry date' would be miracle territory. Here I am. Neuropathy is problematic but manageable. I am managing well with the ileostomy. I would rather not have it, but it doesn't stop me doing anything (apart from an uninterrupted night's sleep).

Back/pelvic pain is intermittently debilitating, but manageable. I'm pretty sure it is a result of pelvic insufficiency fractures caused by radiotherapy. I am referred to the chronic pain team who administer a ganglian impar block which has no effect. Very unpleasant, but in the grand scheme...

FEB 2023

I have the ileostomy reversal on 13th January. That's well over a year later than would have been ideal - Cheers Covid. I wake from surgery with severe suprapubic and pelvic pain. It lasts four torturous weeks. A cystoscopy and CT show nothing. I go through all the opioids (oxy, morphine, codeine, tramadol), but they don't work. I try pelvic floor physiotherapy, and one session corrects the issue almost instantaneously.

Next up is LARS (low anterior resection syndrome). Currently dealing with cramps and fifteen to twenty toilet visits a day. My large intestine is reluctant to perform properly following its long holiday. It remains to be seen how this will resolve.

*I will document my integrative regimen at length in a separate post.

MARCH 2023

I have a colonoscopy which shows the join where my rectum once was is strong. No polyps visible in my colon, and most importantly, no tumours.

LARS is challenging and depressing. I have to sit on the toilet between 10 and 20 times a day. I switched to a low FODMAPS diet which stopped the diarrhoea and constipation; however, I am still only passing partial stools and have a fairly constant, infuriating urge to go. Having an ileostomy bag was a breeze in comparison.

Some people with LARS do daily trans anal irrigation (TAI), or use prune juice to inititiate a 'flush'. I've been told to hold off on these, but I don't think I will. Enough vitamin C also causes a flush, so I may experiment with it first, then TAI. Deep down, I think I will get on top of this eventually. If I do not, I will ask for a colostomy bag. Hungry to get living again!

JULY 2023

TAI is working. I do it once a day and it buys me 24 hours of freedom. I still experience abdominal cramping and pain where the join was made in my intestine which sometimes concerns me. Ascorbic acid flushes work well to reset everything internally too. I'm a little apprehensive about this approach as there are risks, and I'm going against my consultant's advice again. That said, the alternative of living with LARS is intolerable, and I would rather get the ileostomy bag refitted than live like that. I'm very annoyed that I wasn't alerted to the prospect of LARS pre-surgery.

Other negatives are that pain in my sacrum persists when I walk for too long, especially on concrete and peripheral neuropathy is still uncomfortable. The two of these combined will prevent me doing anything beyond very mild impactful physical activities in the future.

All that said, there are so many positives. I'm fast approaching the two year anniversary of my expected death. Life goes on, and I get wrapped up in the same day to day things as everyone else. That said, the fact that I'm still alive does blow my mind from time to time. I'll have to blog about those feelings in detail in another post. Other positives: I can swim and gym regularly, I'm back at work full-time and able to support my family, my two sons (8 months and 5 years) and wife are healthy, and we have some nice holidays planned.

This is the first time since I was first diagnosed with cancer three years ago that I have manageable symptoms without another treatment on the horizon. It may all come roaring back with a vengeance; that's a real possibilty and I have to accept that. However, if I've survived this long, I may as well start making some longer term plans for a life here on planet earth and see how it goes.

Integrative regimen continued.

August 2023

Recurrence of the same bladder, suprapubic and pelvic pain I had in January. It is crippling at times. The physio exercises I learned previously have done little to affect it so I'm back on amitryptiline and switching to a low oxalate, low histamine diet. I will have to blog about pain separately. It can be utterly horrific, but it also strips you back and teaches you things about yourself. Still, I want it gone asap. Avoiding opiates for as long as possible. Cancer still stable.

Mid-September 2023

The pain remained unbearable for much of summer, and I ended up relying on morphine to cope. Thankfully, it has become manageable. The NHS is broken, and the delays to getting to the bottom of this are infuriating. I've paid to see two private urologists and am none the wiser. Radiation cystitis, pudendal neuralgia, nerve damage, prostatitis (and a cancer re-emergence) are all possibly playing a part. I'm currently managing it with hyperbaric oxygen, physio, accupuncture, pelvic floor physio, dietary changes and supplements. Lord knows if any of those things have helped or not. Awaiting MRI results and a cystoscopy. Incredibly frustrating. Want to be more present for my family and to get living more fully. A positive, I suppose, is that I've dragged myself to work every day. Proud that I've managed to. Morphine is the ultimate double edged sword. It is the only thing that touches severe pain for me, yet it also comes packaged with a full-tilt mental health assault. Anyways. Still going and hopeful things will improve again.

APRIL 2024

Crippling abdominal pain results in a trip to A&E and emergency surgery due to a blockage as my bowel was twisted. It was life saving, but mercifully laparoscopic instead of another open surgery. Recovery wasn't so bad, and I got back to work in a couple of weeks. The consultant said this may happen again and there is no way of predicting or mitigating against it. I have something of an unorthodox inner architecture these days. Pelvic pain persists, coming and going. I was on Pregabalin for a few months to try and manage it, but it was useless and dulled my mind.

May 2024

The pain continues unfortunately, ranging from 2/10 to 8/10, mainly hovering around a 6 or 7. Pelvic pain is hideous and has unfortunately come to dominate my life. On the days it subsides a world of possibility and a rich life emerges. But when the pain is present it is difficult to focus on anything else. I'm tempted to go back to an ostomy bag, as none of this was present when I had that. But it is a risk. That said, living with an ostomy bag was a breeze compared to this. I really wish this were a more positive update. I love the idea of being more inspirational, positive and of seizing life having survived my terminal cancer diagnosis for so much longer than expected.

AUGUST 2024

Pain persists, if less constantly so. I've tried a sacral nerve modulator implant it didn't help. Very minor surgery. Cancer still inactive. Definitely going back to an ostomy.

OCTOBER 2024

I have an ileostomy formed privately at Spire. 5k, but the NHS waiting lists were delayed by over a year and they didn't regard my case as urgent. I got three quotes, and this was half that of other hospitals and surgeons... Unfortunately, they make a mistake during the surgery and I am rushed to a NHS hospital two days later for emergency corrective surgery. Horrible recovery. I lose 12 kg and vomit constantly for 4 days. Pain is manageable.

NOVEMBER 2024

Recovery is slow. Planning a sabbatical but want to be well and able to enjoy it.

DECEMBER 2024

Pelvic pain seems to have subsided somewhat since my October surgeries. My ileostomy is beginning to behave and surgery definitely feels like the right call. LARS was a fucking nightmare.

My peripheral neuropathy is re-emerging, and I'm thinking of going to Italy again for Scrambler Therapy to treat it. Still unavailable in UK. The neuropathy is painful but nowhere near as mentally taxing as the pelvic pain.

I've also developed hyperthyroidism (yay) resulting in constant shakes, particularly in my arms which is very disconcerting. I've been referred to an endocrinologist to decide on a treatment pathway. It may be meds/may be surgery. I think it is likely connected to previous treatments. Will have to see, and I will explore alternative options again. My left knee also feels like it keeps popping out whatever the fuck that is.

I'm not doing too badly mentally at the moment, and the time off work has helped. Nice to be with my family. That said, my body feels shot, and I am very quick to fatigue. Really hoping to turn it around and I believe I will, but I also have to manage expectations and bare in mind that 5 major surgeries, multiple minor surgeries, radiotherapy, chemo and palliative chemo have taken their toll. We will see. The first half of the 2020s have been brutal, but I have emerged hopeful and optimistic that 2025 onwards will bring a change in fortune.

I still take many of the supplements from my integrative regimen on a daily basis.

Cancer still inactive.