This is the fifth of my ongoing series of posts about my latest adventure - being diagnosed and treated for bowel cancer. As before, this lengthy post also includes personal details of my treatment over the past month (February), getting physical exercise, my working future and the prognosis going forward into Spring. It is also published one month after King Charles revealed his own cancer diagnosis and the cruel and untimely death of a friend. Despite the sadness this month, the post contains some fantastic news about my progress over the past month, as I 'return to play'. It is edited from the original, with links (including one to a BBC podcast), photos and other identifying aspects removed.
A New Study
According to Cancer Research UK, there are around 16,800 bowel cancer deaths in the UK every year, which works out at 46 every day. Bowel cancer is the second most common cause of cancer death in the UK, accounting for 10% of all cancer deaths (period: 2017-2019). Almost two-thirds (63%) of people in England diagnosed with the disease aged 15-44 survive it, compared with 4 in 10 (39%) people diagnosed aged 75+. Currently in England, screening is recommended from the age of 60, whereas in Scotland and Wales this is much lower - at ages 50 and 51 respectively. From April 2021, the NHS in England have been gradually reducing the age range for bowel screening. This is being phased over next four years to include people aged 50-59. But is that even enough? It should really start at age 45, according to a new report by an open-access journal. The recently published study (2024) by the Annals of Oncology predicts death rates from cancer in the EU and UK for 2024. It alarmingly predicts that deaths from bowel cancer in the UK for people aged between 26-49 will rise by up to 26% in men and by 39% in women this year alone, compared with figures from 2018. Increases will also be seen in Italy (up 1.5% in men and 2.6% in women), among Spanish and Polish men (up 5.5% and 5.9% respectively) and German women (up 7.2%), according to the European Society for Medical Oncology. It is the first time that an increase in bowel cancer death rates among young adults has been predicted for some EU countries, and it confirms a trend in the UK that the researchers first noted in 2021. Numbers being diagnosed are going up, according to the report, because of people being overweight, not getting enough exercise, consuming too much alcohol and other underlying health-related conditions (ESMO, 2024).
Healthy Eating
Given those above risks outlined above, I have taken significant steps to improve my diet and exercise routines. I will discuss my fitness more later, but I have again had to seriously look at nutrition intake. I previously wrote about my diet ahead of and following my defunctioning colostomy (stoma) operation which took place on 4 November. I needed to be on a low-residue (low-fibre) regime, but have since gone back to a full-fibre one. I don't smoke and will never, ever smoke again, although I did a little bit last year. I do drink alcohol, but only in moderation - so no more binges like last May when I went out with some work colleagues. I have had enough of those kind of excesses for one lifetime. Things I have continued to take or have just started taking are electrolyte drink mixes, which contain potassium, sodium and magnesium. The latter is excellent for easing neuropathy, it seems. I always eat a good breakfast of cereal, nuts, fruit and seeds early in the morning (see photo), along with black coffee. Aloe Vera juice, immune system powder, colon cleaner, live friendly bacteria with Acidophilus, pro-biotic yoghurt drinks, cacao, ginger and garlic have all been added or increased, too. I don't feel at any risk of blood clots and exercise is a good way to prevent these. I will discuss the next stage of my recovery from my operation and how exercise can help cope with cancer treatment shortly. Before that, however, I will briefly go back to my original referral in Preston and then summarise my treatment over the past month.
Original Referral
Back on 6 September 2023, I was packing my boxes and getting ready to move out of my flat in Preston. The delivery driver came later that day. But before that I had a call from Royal Preston Hospital about my iron deficiency anaemia and a positive faecal occult blood test. Under the two week rule for possible cancer diagnoses, I eventually had my colonoscopy and gastroscopy on 21 September, as outlined in my first diary entry. Given that misdiagnoses can often occur within the health profession, it was important that my symptoms were correctly identified and that any investigation would reveal whether I had cancer or not. In the end, the colonoscopy, as you probably know if you read part one, showed up a 'growth' (not called a tumour, nor 'cancer' at that point) in the lower bowel. I later discovered it was an adenocarcinoma. These start in the gland cells in the lining of the bowel wall. The gland cells normally produce mucus. This is a slimy substance that makes it easier for the poo (also called faeces or stool) to pass through the bowel. Adenocarcinoma is the most common type of bowel cancer. On 4 October, I received my proper diagnosis - initially by phone and then confirmed by an oncology doctor at Royal Preston on 10 October. At this point everything had to be transferred to Norwich. I also knew that, after two long return trips from Norfolk, I would not be returning to Preston again. Fast forward to my 'defunctioning' colostomy operation, which took place on 4 November, followed by the first meeting with my new oncology doctor in Norwich. This occurred on 5 December after a months wait. There were 91 days between my diagnosis and the start of my chemotherapy. I will discuss the follow-up to that December meeting shortly. Before that, following the first two cycles of treatment, let me give you an update since the end of January. On 31 January, I received a shorter injection of Folinic acid (FOL) and 5FU (F). I joked about several things with the nurse that day. She said that she was “in love with my canula” (which she had created) and that my “bloods were beautiful”. This will probably become a bit of banter every time I go for treatment now. There was a minor error, as I was given another patient’s treatment schedule. But this was soon corrected and I could see that my schedule was settling down to having treatment every Thursday in future - at least until the end of March.
What's up Doc?
Following my original consultation with the excellent oncology doctor at the Norfolk and Norwich hospital on 5 December, I was contacted by him just before Christmas to advise that the flexisigmoidoscopy a week or so earlier had revealed that I had the normal ‘wild type’, non-mutated RAS gene, which meant I could be given a monoclonal antibody called Cetuximab. On 5 February, the same day that Buckingham Palace released the news about the King, I had my second face-to-face consultation. However, it was with a different oncology doctor who had sat in on the earlier meeting and visited me in the ward on 9 January - the day of my 'mental breakdown' at home, which was actually fear and darkness gripping me. During this consultation I was given some reassurance that with 'desensitisation' drugs (an antihistamine and a steroid) taken the day beforehand and early in the morning of the procedure, the infusion coming up would be administered over two hours, not one - and they would treat it as if were the first 'cycle' . A desensitisation protocol can enable a patient to receive the entire target dose of a medication, even if the patient has a history of severe infusion reactions. I have had two so far which have impacted on my schedule and I did not want any more setbacks. The prognosis was to carry on with treatment until the end of March, making slight adjustments if and when necessary. Thursdays would become my regular hospital visit day of the week. Provided all of this goes well and I can complete a total of six complete cycles by the end of March, then an MRI scan and a PET-CT scan would be carried in the first week of April, just after the Easter weekend. This pleased me to have a good idea of when we would find out whether any shrinkage of the tumours had taken place, but in the meantime the CEA marker would indicate whether the chemo was having an impact.
Third Cycle
On 8 February, I had that two hour infusion of Cetuximab (monoclonal antibody), twice the usual length of time because of the false start two weeks earlier. This meant my immune system would not react like before. Chemotherapy desensitisation is safe, but must be carried in good time to allow the immune system to not overreact, like mine did on 24th when I went a shade of crimson red. This was followed by the 2 hour infusion of FOLFOX. I came to the ward, saw the stuff going into me this time rather than turn my head away and conquered it. The only side effects were a little bit of vein pain and peripheral neuropathy in my hands and arms, but no sickness or fatigue in the days after. The desensitisation drugs seemed to worked their magic. On 15 February, my 53rd birthday, I was back into the ward for a shorter dose of 5FU. I did have an allergic reaction to the Cetuximab, albeit a week late, and it arrived in the form of a red rash all over my face as I went in for treatment again. An unwanted birthday gift. This is a very common side effect of the antibody. This treatment often causes an acne-like rash or other skin changes such as dry, itchy or flaky skin. This most commonly affects the face, head and upper body. It is most likely to start in the first 3 weeks of treatment. Skin changes are more likely to happen if you have cetuximab with chemotherapy. I was given non-prescribed Pliazon moisturising and regenerating cream for 'topical use' to apply daily. However, it shows my immune system is working well, so a reaction can be a good sign that the drugs are working. The next day I celebrated my birthday at home, got dressed up and posed for this photo, as I noticed when I put the cream across the nose on my face it was a bit like Stuart Goddard - a.k.a. pop singer, Adam Ant. No photo on here, I’m afraid. As he sang on 'Prince Charming', ridicule is nothing to be scare of! Finally, I have to be a patient patient - difficult when I've got an incredible amount of energy and blood flowing through my veins!
New Blood / Talking to others
It was a good week for my blood results. As I mentioned previously, regular blood tests ahead of a longer chemo session, can reveal numbers that are all important in indicating whether (a) treatment can continue, and (b) whether it is working or not. Platelets, magnesium and iron levels all good and within a range. Most importantly, my antigen (Carcinoembryonic / 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 ! This was fantastic news and shows that it is not just worth carrying on, but to see it through to the end. A scan in April will reveal whether there is significant tumour shrinkage, but the signs are very positive indeed. Talking to others One thing that came out of my darkness and fear on 9 January, was a strong motivation to not burden my family any more, but to seek professional help. This I managed to obtain via Macmillan, who referred me to BUPA (Vita Health) for some talking therapy. Out of this has come techniques about regaining control of the physiology. Then on 13 February, I attended my first group therapy session for cancer patients.. Obviously, I can't share any information from that due to confidentiality, but it was enlightening and remarkable that 8 other men - all older than me, apart from the experienced facilitator, were able to be so open about their diagnoses, prognosis and treatment - two of them were not having any at all for personal or medical reasons.
Fourth Cycle The red rash on my face and chest became worse before the fourth cycle began on 22 February. I continued to apply the moisturising and regenerating cream as flaky skin took over my face. I started leaving the house incognito or wearing a face mask in a return to pandemic times. I am now also using Aveeno Skin Relief for my hands. Another 6 hours session, including another 2 hours of the aforementioned antibody, plus the regular FOLFOX. It went well, with the usual side effect of peripheral neuropathy in both hands and arms afterwards. The rash was still prominent, but manageable, although it did get worse the following week. Another short session on 29 February completed the fourth cycle
Step by Step
'Stoma' is a Greek word (στόμα) that means "mouth," and your mouth is indeed one kind of stoma, or natural opening in your body. It is referred to several times in the Holy Bible (as in the verses above). Ears and nostrils are also stomas, as are holes created through surgery. An operation to help a patient breathe might create a stoma in their neck, for example. The operation to create an opening from the walls of my lower colon was a complete success. Although I initially freaked out about how it looked and in trying to maintain it - I wasn't a good patient at first - I began to accept it and learned how to cope with it on a daily basis. It helped that several people I know who have had one say they got used to it fairly quickly and have subsequently lived with one for 30+ years. Nowadays, the stoma nurse need not visit me, although she did pop in on 23 February and was impressed by my progress. I order my supplies through a company called Fittleworth and have support from another related company, Secure Start, should I need it. However, I still haven't given my stoma a name. Step by Step Step 4 is known as 'Return to play' and covers the period from 3 months to 6 months post-op. Step 3, the 'strengthening stage', covered the period from 6 weeks to 3 months. The Fittleworth guidebook says that you should be seeing and feeling some good progress. Heavier objects can be lifted and more strenuous exercise can be done. At this stage you should feel more comfortable with exercising. As well as returning to more rigorous activity, I have done some small amount of gardening such as raking leaves and filling a wheelbarrow full of wood and taking it to the fireplace. Shopping and carrying heavier bags is also allowed now and I have managed so far. It helps that the weather in February was a marked improvement on the previous month. Spring seemed to come early and with the bright sunshine it has encouraged me to get out more and be more active. It makes a difference from lying in bed until 10am! It is important to perform specific exercises, such as breathing ones, hip twists and glutes stretches. For more strenuous exercise, such as the parkrun and carrying heavier items, you should be mindful to start with an empty stoma bag. This is because increased mobility can stimulate the bowel to function. According to Colostomyuk.org, it is easy to forget what your body has been through with the illness or injury that necessitated your stoma. Their advice is to take gradual steps and walk for a longer distance than you plan to run first, and jog or walk in between running if needed. I was already walking around 8,000 steps per day in January after a sluggish, depressing start to the new year. In February, that has increased to an average of 12,500 steps each day, with a pledge to participate in Cancer Research UK's 'Walk All Over Cancer' in March. I will do at least 10,000 every day in March. I've got the T-shirt! The kind of advice I have been getting and reading about is crucial as I also made a return to park running. I began taking part in parkrun again just before the fourth step (stage) of recovery, walking and jogging the 5km course on 27 January in around 36 minutes. On 3 February, I volunteered at Holkham parkrun, wearing green for Macmillan and in acknowledgment of World Cancer Day, actually marked the following day (see photo below). The following week I completed my 25th parkrun - well, I walked and jogged (again) but this time in around 31 minutes. Later that night I had my first homemade spicy curry for about 6 months! I marshalled again on 17 February, due to my birthday celebrations at home and not wanting to overdo things. Then jogged round in 31:43 on 26 February, with the peripheral neuropathy impacting on my breathing. So I took it steadily, still showing significant progress.
The Cost of Living
Immediately after my fourth cycle was completed on 29 February, I applied for a small, one-off Macmillan grant of £200. I used my subsequent payment to cover the additional travel costs of getting to and from the hospital, but supplying evidence of extra fuel costs might prove tricky. I also received a single cost of living payment of £299 which I was entitled to by being on Universal Credit. This helped offload some of the costs, which for some can run to thousands, mostly due to lack of income from work. I also asked about travel insurance ahead of my likely trip to Spain in late April/early May. Conclusion Raising awareness of cancer symptoms, diagnosis and treatment is so important. Providing correct and reliable information is essential. Given the King's cancer diagnosis, arguably even more so. It just goes to show that cancer can affect anyone, however rich or poor, privileged or disadvantaged. However, I baulked at some suggestions in the national media that the King 'had started a conversation around cancer'. Whilst that might be questionable, the good attendance at the Big C men's group might indicate that he has made an impact on men talking about their diagnosis and treatment. Macmillan, Bowel Cancer UK and many other organisations have been starting and having that conversation for years! Nice to be able get treatment straight after diagnosis, mind.
References: Ahmed, AS, N Ormiston-Smith, P D Sasieni (2015). Trends in the lifetime risk of developing cancer in Great Britain: comparison of risk for those born from 1930 to 1960. British Journal of Cancer. Available at: https://pubmed.ncbi.nlm.nih.gov/25647015/. Accessed 24 February 2024. Bowel Cancer UK (2024). Bowel Cancer Screening. Available at: https://www.bowelcanceruk.org.uk/about-bowel-cancer/screening. Accessed on 31 January 2024. Cancer Research UK (2022). Grades and Types of Bowel Cancer. Available at: https://www.cancerresearchuk.org/about-cancer/bowel-cancer/stages-types-and-grades Cancer Research UK (2024). Cancer Statistics. Available at: https://www.cancerresearchuk.org/health-professional/cancer-statistics/. Accessed on 31 January 2024. European Society for Medical Oncology (2024). Obesity and Alcohol Are Contributing to Increases in Bowel Cancer Rates among Young Adults. Available at: https://www.esmo.org/newsroom/press-and-media-hub/esmo-media-releases/obesity-and-alcohol-are-contributing-to-increases-in-bowel-cancer-rates-among-young-adults. Accessed 1 February 2024. Macmillan (2023). Cetuximab. Available at: https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/cetuximab#common_side_effects. Accessed on 6 February 2024. Macmillan (2021). Working Rights and Cancer. Available at: https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/work-and-cancer/cancer-and-employment-rights. Accessed on 6 February 2024.
