This is the sixth of my ongoing series of posts about my latest adventure – being diagnosed and treated for bowel cancer. It follows on from the previous post published here on 19 March. It is has been another interesting month for news and stories in the wider world about cancer diagnoses and further studies into cancer treatment. I also want to share something that I have been creating over the past few months. It is a song has meant a lot to me over the past year since it was released in March last year. It is called 'Playing for Time' and this is the overarching theme of this post, following on from one subtitled 'Return to Play'. It is probably going to be my last post on this topic for a while.
Cancer is Common
Following King's Charles cancer diagnosis at the beginning of February, the Princess of Wales revealed her own cancer diagnosis following abdominal surgery earlier this year. Cancer does not discriminate. Furthermore, no-one, not even royalty, should have to feel forced to reveal their health diagnoses, but there was general media concern following an edited family photo and some pressure to disclose private medical information. Her impact on people searching for cancer symptoms and contacting cancer charities has increased significantly on the back of this. My main two online resources over the past six months, Macmillan Cancer Support and Cancer Research UK, both reported increases in traffic, with the former saying that 'its online information and support pages were at the highest weekend levels since the first Covid lockdown' (Whitehead, 2024). Apparently, there were close to 100,000 visits to the Macmillan website by the end of that Sunday and the highest for a weekend period since at least March 2020. Whatever you think of the Royal Family, and I am by no means a monarchist, I don't wish cancer on anyone. I applaud her dignified statement and I hope she makes a full recovery.
Stories about cancer continue to be quite prominent in the media, with BBC Breakfast and The Guardian in particular featuring news. March was Prostate Cancer Awareness Month. The Guardian reported this month about Prostate cancer cases worldwide likely to double by 2040. The findings were published in the Lancet. This type of cancer is already a major cause of death and the most common form of male cancer in more than 100 countries. However, cutting the duration of MRI scans for prostate cancer by a third would make them cheaper and more accessible without reducing their accuracy. That is the key result of a UK trial which indicates that lowering costs could ensure more men are offered scans. According to Cancer Research UK, there are about 52,300 new prostate cancer cases every year in the UK, equal to more than 140 a day. Meanwhile, former TV personality Esther Rantzen, who has stage-four cancer, meanwhile, continues her controversial, but in my view welcome, campaign to change the law on assisted dying. Another Guardian report on this topic featured a woman who took her own life with Dignitas in Switzerland, having suffered with terminal stage 4 bowel cancer since 2021. A more positive report on a bowel cancer study is coming up further down this post.
Earlier this Bowel Cancer awareness month, Fearne Cotton's 'Happy Place' podcast featured DJ and broadcaster Adele Roberts. She was diagnosed with bowel cancer in October 2021. Cancer and having a stoma made has changed her perception of her own body for the better. There are similarities to my story, in terms of a similar diagnosis (albeit stage 3) and having to have a stoma operation. Adele talks through the symptoms of bowel cancer, what the experience has taught her about positive mindset, as well as the realities of going through chemotherapy. It's a fascinating and emotional listen / watch. Later in the week, she appeared on BBC Breakfast talking about her stoma and joked that 'going to the toilet in the normal way as sooo 2021'.
My own story
Of course, I have not held back revealing not only my stage 4 bowel cancer diagnosis back in October, but gone into some detail over five previous, public posts because, well, I'm an educator and part of me feels the need to inform. I try to blend my own story with information out there from both the cancer charities already mentioned and other resources, such as new research and published academic papers. IF I happen to save one life by someone seeking help for their symptoms which could lead to a cancer diagnosis, then I will have done something positive.
Back on 5 December, I was told in no uncertain terms that I probably had around *6 months to live from the date of my diagnosis. Well that diagnosis of stage 4 bowel cancer came on 4 October by phone with official confirmation a week later with a oncology consultant at Royal Preston Hospital. However, this prognosis was based entirely on either receiving no treatment at all, if I refused or rejected it. I began to think quite seriously that I might be entering a phase of my life from which I don't know if I will ever fully recover and both the physical and mental changes in me. I seriously thought about my own mortality, feeling grateful if I could live another 5 or 10 years, with regular check-ups and whether I was, indeed, 'playing for time'.
Obviously, with that prognosis, I went ahead and had treatment - the first full dose of FOLFOX chemotherapy began on 2 January. As stated before, It caused me to be sick and I had to stay overnight in an acute ward. Then I received even more targeted treatment with a monoclonal antibody (Cetuximab), alongside FOLFOX, which started properly on 8 February after one false start two weeks earlier, when I had an allergic reaction. Since then, everything has gone fairly smoothly.
Treatment Update
On 7 And 14 March, I completed my fifth cycle of FOLFOX chemotherapy and my third full session of the targeted Cetuximab antibody - at the hospital. On 21 and 28 March, I completed my sixth and fourth cycles of each respectively. Previously, I stated that my Carcinoembryonic antigen (CEA) numbers dropped from 1311.6 to 1184.7 between 22 January and 5 February. Then following a blood test taken on 20 February, ahead of my fourth cycle, this had dropped dramatically to 680.8 - half of the previous score ! This dropped again to 184.5 on 6 March, then halved again to 99.1 on 19 March. Finally, on 3 April, my latest blood test (see below photo) revealed that this had halved again to just 47.1 !! So a combination of chemotherapy, targeted antibody and, quite possibly, prayer, had impacted significantly on this progress. On 4 and 11 April, I completed the seventh and fifth cycles respectively, two days before the publication of this latest post, with no problems at all, apart from the usual side effects previously described in earlier posts. On 1 April I was due to have an MRI liver scan with contrast (dye). Unfortunately, due to mechanical failure of the scanner at Cromer hospital, this was cancelled. Fortunately, a rescheduled appointment on the same day as a CT scan, also with contrast, on 5 April was arranged at the hospital. These two scans went smoothly. A total of 16 visits to hospital so far, including the scans, but excluding consultations and visiting the local Big C charity centre for massages, financial advice and a men's group therap
In-person Cancer Groups
I have attended both another two recent meetings of the men's cancer group at The Big C, Norwich, and have also twice been to Wells-next-the-Sea Cottage Hospital for a Cancer, Share & Care group. This later drop-in session will be meeting every other Monday morning. It is an informal group who can offer each other support by discussing our experiences. It's a great help for those that can't easily get to the city and want a face-to-face chat. So if you are in Wells-next-the-Sea, feel free to pop along for a free coffee and a chat. Talking of which..
Coffee Drinking
The Guardian newspaper (again) recently reported on a new study that stated that people with bowel cancer who drink two to four cups of coffee a day are much less likely to see their disease come back, this new research has found. It goes on to say that people with the illness who consume that amount are also much less likely to die from any cause, the study shows, which suggests coffee helps those diagnosed with the UK’s second biggest cancer killer.
The study focused on 1,719 bowel cancer patients in the Netherlands by Dutch and British researchers. They discovered that those who drank at least two cups of coffee had a lower risk of the disease recurring. Interestingly, those who drank more saw their risk fall the most. Patients who had at least five cups a day were 32% less likely than those who drank fewer than two cups to see their bowel cancer return, according to the paper, which was funded by the World Cancer Research Fund (WCRF) and has been published in the International Journal of Cancer. Similarly, higher levels of coffee consumption also appeared to be closely linked to someone’s chances of surviving As with the risk of recurrence, those who had at least five cups saw their likelihood of dying fall the most – by 29%."Experts said the findings were “promising” and speculated that, if other studies show the same effect, the 43,000 Britons a year diagnosed with bowel cancer may be encouraged to drink coffee. "
As a frequent and regular coffee drinker (often mixed with cacao), I was thrilled to hear about this study, even if those kind of statistics can be misleading or unproven. Coffee is rich in a large number of compounds that may have antioxidant and anti-inflammatory effects. I usually drink around 3-4 to cups of caffeinated coffee per day, but not often after 2pm in the afternoon. It is a morning thing, to get me going and keep me stimulated whilst I write or do a bit of work. But I deliberately avoid any caffeinated drinks towards the later part of the day and never in evenings, because I take care of monitoring my heart rate and value my sleep at night. Last year's birthday gift, a smart watch, tells me if I need to relax.
As I stated in my previous posts I have taken a very active and positive step towards controlling my diet, adding natural ingredients into my nutritional intake rather than consuming further pills. This includes consuming watermelon - with its unproven anti-cancerous properties. In addition, I take rehydration drinks which contain electrolytes. I've also recently added organic moringa powder, after a discussion about this with a nurse during hospital treatment. Furthermore, a complete choco meal, which was kindly given to me by the sister of a dearly departed friend, is also now in the nutritional mix. It will help with my physical exercise. On which note...
Previous posts have described my journey back to a good exercise regime of walking and running. I went back to park running in Holkham on 27 January, albeit jogging and walking some of the 5km course. I continue to jog and walk where necessary, not having been able to run continuously for 5km since my final and fastest run in Preston last September. I walked an average of 12,444 in March. Actually this was lower than the 15,142 per day I managed in February. Two friends raised money for Cancer Research UK by, respectively, covering 62 miles in the March and managing 10,000+ steps per day. I took part in an Active Fakenham Easter Sunday event, which was well represented by my local running group, Runners-next-the-Sea. I hope to join them soon, because although I have been doing 5km on most Saturdays since 27 January, I have not really been training during the week, other than getting my steps in. I used to attend a gym in Preston on Tuesdays and Thursdays, but have been slack when it comes to actual training since returning to Norfolk. I also 'ran' at Eaton Park, Norwich, for the first time on 6 April, two days after receiving the full chemo and a day after my scans. The ostomy will just have to behave! If Adele Roberts can do it, though. She is also a keen runner and has completed three London Marathons - something I can only dream of doing, although I would love to one of these days. In 2023, she became the fastest woman to run the Marathon with a stoma bag, incredibly finishing the race in 3:30:22, achieving a Guinness World Record.
Playing for Time
When I learned of my prognosis on 5 December, I began to wonder about whether I would survive. Clearly not having treatment or it not working would impact on me surviving this. As I stated earlier, I began to seriously consider my mortality. I actually imagined my funeral service - later this year - and the songs I would like played at it. Alongside Snow Patrol's 'Run', when the coffin would come in, and Johnny Nash's 'I Can See Clearly Now' at the end, the middle part of the service would feature a montage of photos from my life set to a relatively new song. At the very least, if I was to die suddenly, everyone now knows what I want played! This took me to a particular song which featured on my favourite and most played album of 2023, namely the third track released from the long awaited i/o album by Peter Gabriel. Back in November 2013, I attended Gabriel's 'Back to Front' concert at the 02, London. The opening, unfinished song called 'Daddy Long Legs' eventually developed into 'Playing for Time' - it only took 10 years to complete and a mere 20 years since the i/o album was initially rumoured!
Latest Oncology Consultation
Finally, on 22 April I had my first in-person consultation with my oncology doctor at the Norfolk and Norwich hospital since 5 December. This had been brought forward by one week, because the scan results had come back from the radiologist on the day after I arrived in Brighton. We mostly discussed the MRI scan result, which I stated earlier happened on 5 April, along with a CT scan. He began by expressing that there was a 'mixed picture'. The CEA numbers had dropped significantly, but that is only a marker. The three previously discovered tumours in my liver, which were 87mm (although I recall it being 92mm in November), 34mm and 22m had reduced in size to 53mm, 24mm and 10mm respectively. The largest lateral segment metastasis had not reduced as much as I had hoped, but in the words of the doctor, things were 'heading in the right direction'. The two satellite lesions can be found in segment 8 and 2 (see image). There were no new tumours in other organs. So this was good news.
However, a new ill-defined, slightly hypointense lesion has been discovered in segment 6. It is currently 1cm (10mm) in diameter. This is a concern because it could be an indication that the cancer has become resistant to chemotherapy and be more aggressive than previously. It is unclear at this stage whether the appearance of this new lesion is life-threatening, but it could be. The team at Norwich will consult with Addenbrookes (Cambridge) in a tertiary meeting planned for this coming Thursday. Provided this goes ahead, they will collectively look at the MRI report and images together. It is quite likely that I will need a PET-CT scan which will give a clearer picture. If that is the case, then a 2 to 3 week break from chemo will have to take place. This might result in positive news as the new lesion could actually be a non-aggressive cyst or fatty tissue. In this scenario, we would continue with chemo until the lesions had reduced in size sufficiently to have a resection (surgery). At least I would be able to go to Spain.
However, if it is not good news and the cancer has, indeed, become resistant, a switch to a different chemo drug could be required - one called Irinotecan. The Oxaliplatin and Cetuximab would cease to be administered. I would then move from treatment for a cure to a palliative stage - controlling not curing what would now be classed as 'terminal' cancer. This news shook me and I am still processing it. I will return to Norwich next week (1 May) to find out what has been discussed and the prognosis going forward.
Conclusion
So, in conclusion, I still feel like I'm 'playing for time', just as I did back in early December following my prognosis. I am still trying to kick my cancer's arse by doing as many right things as possible, including diet, exercise and being a good boy by taking all of my chemotherapy. But I can only control my actions and behaviour. I cannot control what is going on inside my body. Cancer is a bugger and will find ways to thrive and survive. The news was not as good as I had hoped, but I will carry on. The trip to Spain may be delayed, but there is still the possibility of a single week (7 day) break and appointments could be rescheduled so I do not miss treatment at all. Or if a PET-CT scan is required, there would be an obvious 2 week break when I could travel to Spain, but it is still too early to get the insurance and book that flight!
