My Cancer Diary – Part 6 (Playing for Time)

I could be dead by now*.

Longwell Records #1. Recording a tune in Wells-next-the-Sea.

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 last post published on 2 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

The Princess of Wales reveals her cancer diagnosis. Front page on 23 March 2024.

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 (CRUK), 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.

The brilliant and always on topic, @allontheboard. 23 March 2024.

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 week, 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’.

Bowel Cancer Awareness Month

An animated video from Bowel Cancer UK

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 in this post, 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.

A comparison of Cetuximab / Oxilaplatin (swipe l<>r)

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.

Carcinoembryonic antigen numbers 6 Mar, 19 Mar and 2 April

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 therapy.

In-person Cancer Groups

I have attended both another two recent meetings of the men’s cancer group at the Big C charity in Dereham Road, Norwich, and have also twice been to Wells-next-the-Sea Cottage Hospital for a Cancer, Share & Care group, organised by Sharon Kelly. This later drop-in session will be meeting every other Monday morning. According to Sharon, 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.

Various Health products, including Kendal Mint Gel, and
yfood Complete Choco Meal at the back.

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..

Signing up for the Macmillan Lottery with Clel at the
National Outdoor Expo, NEC, Birmingham, 23 April. (swipe l<>r)

Keep on Running

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, Michelle and Matthew, 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.

Upcoming Consultation

As of the date of this post, I am waiting for the result of the two scans that took place on 5 April. Then I will probably have a consultation with my oncology doctor about the results and whether I can travel to Spain at the end of this month. Although I am not scheduled to have a meeting until 29 April, I hope to hear the results before then. Timing is important and I will have to get a GP letter to confirm that I am safe to fly and to make any travel insurance valid. Update: Please keep reading for the update… in the meantime..

A new ‘guitar heroes’ version of Mark Knopfler’s ‘Going Home (Theme from ‘Local Hero’)’ released in March for the Teenage Cancer Trust.

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!

‘Playing For Time is a song that I have been working on for a long time and have performed live, without lyrics, so some people may be familiar with it. It’s been an important song for me. It’s about time, mortality and memories and the idea that each of us has a planet full of memories which get stashed inside the brain.

Gabriel, P (March 2023).

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 and a mere 20 years since the i/o album was initially rumoured! Tied to the theme of this sixth post, the title was revealed on 7 March 2023 with this press release at the time from Gabriel. The title should not be confused with a 1990 single by George Michael, called ‘Praying for Time’, although with the prayers that were sent on my behalf up last month, it would be just as appropriate. The Gabriel song is my favourite track on the i/o record, although you may know I recently recorded a version of another track, ‘Love Can Heal‘, from the album. Both will appear on a new 4 track release called ‘The Angel EP‘, along with a version of ‘Digging In The Dirt‘ as well as a previously released version of the track, ‘Washing of the Water’, to be released later this month. Both of the latter tracks mentioned were originally released on the 1992 album called ‘Us’. More on this at the end of this month, when I will share the audio and homemade videos for each one. The new tracks have been partly recorded at home and also with the help of my friend, Hannah, using her weighted keyboard and software called Cubase.

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UPDATE [note: this section has been rewritten from the original post on 13 April and added to on 22 April with the latest news]

Return to Brighton

I visited Brighton for the IATEFL conference (16-19 April) and looked out for my donors, thanking them personally. It was the first time I’ve been to the city since the 2018 conference when I presented my first ever talk on Mental Health in ELT. So it holds a special place in my heart. I attended the whole of Wednesday, including the BC drinks reception and evening quiz, On Thursday 18th I offered a ‘walk and talk’ with free ice cream or coffee along the promenade, on what turned out to be the best weather of the week. So, I spent the best part of one week in Brighton, meeting lots of friends who I usually only see and engage with online, fellow ELT professionals and former work colleagues. There were some brilliant plenaries which can be watched on the IATEFL YouTube channel. I went to some great sessions, too, including three on the hot topic of AI. Vicky Saumell gave the opening plenary on this, asking whether we had ‘figured it out’ yet. I was able to catch up and have quality one-to-one chats with supportive ELT folk, many of whom contributed to Hugh’s fundraiser for me, which I wrote about last time. I was able to attend some of the Friday sessions, too, and was grateful to be in the audience for poet *Brian Bilston’s performance at the end. *Not his real name, according to Fiona M! I also went to the 5th Hands UP Project conference at the Friends Meeting House, which was a moving and emotional evening.

With Belen, Bruno, Danny and David in Brighton, 18 April.

London Marathon 2025

On Sunday 21 April, as the 2024 event was taking place, I applied for the 2025 TCS London Marathon – through the general ballot and also via Macmillan, for which I would have to raise £2,500. The charity receives around 13 applications for every place they have available, so are obviously not able to offer a place to every applicant. In addition, I have applied via Cancer Research UK, which also asks for a minimum target of £2,500. Both have £100 registration fees if successful. The event is over subscribed each year, but I spoke with keen runner Josh Round in Brighton this week about this. It is unlikely I will get chosen due to the incredibly high interest, but I have wanted to this for years and especially since I took up running again. I grew up in East London and watched the first two events (1981, 82) from the 16.5 mile mark – Westferry Road on the Isle of Dogs. I would love to get the opportunity to do this on my former home turf and seek another new, physical challenge. Anyway, wish me luck in my three applications!

Mighty Hike Fundraiser

A reminder that I am raising money again for Macmillan, by doing their Mighty Hike in North Norfolk in one months time – on 12 May – with my good friend, Rene, who is coming down from Leeds. Although I reached my initial £250 target recently, I have increased this to £300. So if you can still donate here if you wish. This 13.5 mile walk will be a good starting point for any marathon next year, although I will have do a lot more training and seek a lot of advice. However, I won’t find out until August if I have been successful in applying.

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.

Liver Segments. source: Radiopaedia.org

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.

New 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, but it is still too early to get the insurance and book that flight!

I will not be writing another blog post, just updating on social media when I know the outcome of this week’s meeting. Although there will be a different post coming up where I share the ‘Playing for Time’ video that I have been working on. Look out for that very soon!

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References:

Booth, R. (2024). ‘We need to talk about choice: woman who ended life at Dignitas urges change to UK law’. In The Guardian. Available at: https://www.theguardian.com/society/2024/mar/20/woman-ending-life-at-dignitas-calls-for-uk-law-change

Campbell, D (2023). ‘Coffee drinkers have much lower risk of bowel cancer recurrence, study finds’. Available at: The Guardian. https://www.theguardian.com/society/2024/mar/23/coffee-drinkers-much-lower-risk-bowel-cancer-recurrence-study. Accessed on 24 March 2024.

Gecsoyler, S. (2024). ‘UK government law on assisted dying a mess, says Esther Rantzen’. In The Guardian. Available at: https://www.theguardian.com/society/2024/feb/29/uk-law-on-assisted-dying-a-mess-says-esther-rantzen

Gregory, A. (2024). ‘Prostate cancer cases worldwide likely to double by 2040, analysis finds’ in The Guardian. Available at: https://www.theguardian.com/society/2024/apr/04/prostate-cancer-cases-worldwide-diagnoses-deaths-2040-study

Macmillan Cancer Support. ‘Irinotecan‘. Available at: https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/irinotecan

McKie, R (2024). ‘Cheaper, quicker prostate cancer scans just as accurate ‘and can help more men’ in The Guardian. Available at: https://www.theguardian.com/society/2024/apr/06/cheaper-quicker-prostate-cancer-scans-just-as-accurate-and-can-help-more-men

Whitehead, H (2024). Cancer charities report surge in website traffic since Kate Middleton’s message. Available at: https://www.civilsociety.co.uk/news/cancer-charities-report-surge-in-website-traffic-since-kate-middleton-s-message.html. Accessed on 26 March 2024.

World Cancer Research Fund (2022). Coffee and cancer: what’s the latest evidence? Available at: https://www.wcrf-uk.org/our-blog/coffee-cancer-latest-evidence/. Accessed on 24 March 2024.