This is the fourth part of my cancer diary which covers the next stage of my treatment - the all-important chemotherapy. It details what has happened since the start of the year, following on from previous posts about the original diagnosis, stoma operation and the prognosis going forward. Whilst not as graphic as last time, it still reveals personal details, including feelings about treatment, dealing with negative and positive thoughts. It muses on faith, or the lack of it, and gets dark before getting lighter - so please read to the end. It is interspersed with a small selection of relevant songs to illustrate my words and recent mindset.
Note: I have removed any personal information, photos, videos and some links from my original post published elsewhere on 28 January.
First Cycle
Chemotherapy finally began on 2 January, nearly eight months after my symptoms first started appearing, and will continue for at least three months. It will be delivered in a series of cycles with alternating longer and shorter infusions. A blood test was carried out just before the new year at my local GP surgery and these are needed just before every longer infusion. The first one of these involved being given some steroids via a canular in my left hand. This was followed by 50mg of calcium folinate (Folinic acid) and 650mg of 5FU (Fluorouracil) in a 25ml solution*. Folinic acid is given with Fluorouracil to treat colon cancer and other parts of the digestive system. It is not a chemo drug but makes the 5FU work better. I refer to this one as '5 x Fuck You (Cancer)'! A saline solution flushes the vein inbetween. Then came the 'big beast' that was 225ml of Oxaliplatin in a glucose solution of 500ml. This was administered by IV/drip infusion over two hours. This seemed to be going fine, until around 80% of it had been consumed by my body. I started to feel some pain in the vein around the injection site and alerted a nurse. Then I started to feel nauseous and, not long after this, was sick. It was a combination of the drugs, the extrasensory overload of the treatment ward and the pounding rain outside. I received an injection of Levomepromazine in the shoulder, before finishing the treatment. After another two hours of weakness, frequent throwing up and increasing irritability, I was transferred via the acute oncology service to an acute medical unit, where I was given Ondanestron by IV, a specific 5HT3-receptor antagonist which blocks 5HT3 receptors in the gastro-intestinal tract. It is used to treat vomiting. This worked quickly, but I stayed in the ward overnight as was too weak to leave with my sister-in-law who had accompanied me for this first round of chemo. After a restless night, during which I had a consultation with one doctor at 4am and then again with another one at 10am, I was prescribed both the above anti-emetic drugs, plus Domperidone (which I initially misheard as Dom Pérignon - actually jokingly referred to as the 'champagne drug' within the oncology ward) and some steroids (Dexamethasone).
Nerve Damage
In the two weeks which followed, I noticed one of the common side effects of treatment - peripheral neuropathy. This temporary nerve damage mostly affected my left arm and hand, but also my right arm, too. This meant an almost constant tingling, 'pins and needles' sensation in the affected area, along with occasional dizziness. Cold things make it feel worse, so the sudden drop in temperature didn't help. Oxaliplatin causes this and I can expect some nerve damage for the duration of my treatment. For most patients this stops after treatment, although some people get it in the legs and or feet. Some get it after treatment finishes and is worryingly more permanent. I also had some significant bruising in my left hand which I put down to the canular being in longer than planned (24 hours) rather than the chemo drugs. This bruising worryingly remained for the next two shorter treatments and meant that my right hand had to be used. Two shorter visits (9, 16 January) involved a quick blood test, then an injection of Folinic acid and 5FU* - no more than 25 minutes, although on the second occasion we did have to patiently wait for the pharmacy to deliver the goods.
Facing a Real Threat to Life
I don't need my nerves to be any more damaged than they already are. For years, as you will know, I have experienced an overreactive sympathetic nervous system - the one responsible for 'fight, flight or freeze'. This is dictated to by the amygdala and is responsible for activating fear and adrenaline. It is also responsive for keeping us 'on edge' by being involved in the process of releasing cortisol to keep us hypervigilant and 'on alert' for dangers. Too much sympathetic activation confuses the brain into believing that we are in danger, facing an actual a life-threatening risk. The amygdala doesn't distinguish between an actual threat and a perceived 'threat' caused by stress so more adrenaline is released. This is the basis of many anxiety disorders (Fletcher & Stott, p112). Stress does not directly increase cancer risk, but according to Cancer Research UK it can be harder for some people to keep healthy during stressful times, which can lead to an increased risk of cancer.
Except that ever since my prognosis on 5 December, my mental health had deteriorated, as I began to describe in my previous post. This can be understandably be put down to an actual, real threat to my life, rather than any previously perceived one. Big difference. Fear began to rear its ugly head once more and I have often felt not far away from a so-called 'panic attack'. I have felt quite depressed, consolidated some negative automatic thoughts and ruminated. I've drawn the blinds and shut out the night. I have also felt suppressed anger and resentment like never before. All these feelings are all linked to my diagnosis and subsequent prognosis, but are also based on well-established, pre-existing fears about mortality - not just my own, but some members of my family. On a number of occasions I have lost it, physically hitting out at inanimate objects and, sometimes, verbally towards close family members. On the morning of 9 January, before the first shorter session, I lost the plot at my mum's place. I threw myself forcibly into a brick wall and bruised my ribs, giving me two weeks of firstly pain, then mild discomfort. I won't be doing that again any time soon. My sister-in-law rang me during a heightened morning of distress and ordered me to get to the hospital, telling me that because of the prognosis given, I might have only 2 or 3 months left to live if I didn't go! Not strictly true, because I have had some treatment already, but strict nonetheless. It was a 'wake up call' that I needed reminding of. They say you go through a rollercoaster of emotions with cancer. Tail in a spin. The treatment feels like the climb, but I don't always know when the next big dip will arrive. I've always been a bit 'loopy', but now I get that sinking feeling, too. For a while I became torn between fighting (the cancer) and not fighting (bypassing the sympathetic nervous system response). Just gotta ride it.
A Negative Attitude: To be or not to be?
I have written previously about wanting to know the worst case scenario, so that I am informed and take ownership of my situation. I did this on 1 November when I met my stoma surgeon at the hospital and ahead of my operation on 4 November. He said I was 'unfortunate' to get cancer of the bowel. So no medical reasons, no godly punishment for my sins on Earth, whatever they might be. Just my 'bad luck' then. I already knew that an operation was necessary to bypass my significant T3 stage adenocarcinoma blockage, graphically shown in part 3 of my diary. But my mental health has suffered since that operation and, in particular, since the oncology consultation on 5 December, which I also detailed in that previous entry. I was told that I might have around FOUR MONTHS to live from that point if I had no treatment at all. This was and will probably be the biggest shock of my life. Imminent death suddenly became a reality. As I said earlier, an actual threat to life not a perceived one!
But am I better off dead? That is my question! You might be surprised to learn that I have often asked myself this. It returns to mind when I fall into depression or when I experience the 'slings and arrows' of life. Many people suffering with clinical depression and anxiety may contemplate suicide at some point. Armed against 'a sea of worries' (my only, formal diagnosis in The Priory Clinic, 2012, was 'generalised anxiety disorder'), I have gone through suicidal ideation in the past, but never intentionally 'taken arms' and tried to end things. Just miserable, failed attempts, not even cries for help. But please be reassured that they are mostly only ever thoughts, as conscience can 'make cowards of us all'.
Having first learned about Hamlet’s soliloquy when I was 17 years old, I wrote a melancholic song called 'Suicide', paraphrasing the idea with simple lyrics. Was that when I first had my own existential crisis? Well not really. As I stated in a revelatory post on my personal blog last year. I had so-called 'panic attacks' in very early childhood - I could not comprehend the thought of not being alive. I would have some of the symptoms of a panic attack with the thoughts about me not existing. Only the biblical book of Revelation brought any comfort - my parents are both Christians and there have always been copies of The Bible at home for reference. As a child, I used to lay awake at night thinking of my demise and IF knowing that it was coming, would do something outrageous, or set a new world record by jumping off some tall building without a parachute or similar. The true fear may not actually lie in death, but dying in pain. I rejected religion and religious practices in my teens, but faith has lingered around and I know it works for millions. I never knowingly knock it. But would a man without true faith long for a 'peaceful sleep'? Would it really be any better in that 'undiscovered country', as Hamlet puts it, from where no traveller can return?
There's the rub!
These might be the thoughts of a dying atheist (see above tune), although I would describe myself more as a non-practising, non-militant agnostic. Maybe there are angels on my curtains, keeping the outside out (see below tune). I know people pray for me but I don't do it myself, not having a direct line. So the fear and the uncertainty of not knowing, the literal position of an agnostic, if there is an 'afterlife' infects my waking reality. The atheists amongst you may tell me to completely trust the science, while the faithful amongst you may remind me of what I would need to do, but I still don't want to take that 'leap of faith' just yet.
And yet. I have shown resilience many times in my life, and people think I'm stronger than I've often believed myself. Faced with months of treatment, before any scan might reveal whether the treatment was working or not, I have felt very depressed. I have wondered about the next prognosis moving me into a palliative phase and would be staring death squarely in the eye. However, I could complete every stage of my chemo, all the necessary adjustments can be made and I will make an incredible recovery. The treatment will have worked and, following likely surgery, I will have years, not months, before I shuffle off this mortal coil. But enough of this musing on life or death. Let me move onto discussing further treatment and end with some positivity. So please keep reading, as it does gets better, despite another setback.
Second Cycle
From the start of the second cycle (24 January), a monoclonal antibody called Cetuximab, was administered. As I indicated at the end of my last post, I have, indeed, got the normal ‘wild type’, non-mutated RAS gene. This was good news to receive just before Christmas. The Cetuximab is a targeted therapy drug which improves the chances of survival, and works alongside the main anti-cancer drug, Oxaliplatin. Because I have switched to a 2-week cycle from this date, this has resulted in a lower dose of Oxaliplatin (150mg) being administered each time, but still the same amount over a 6-week period (450mg) as would have been administered on a 3-weekly cycle. Appropriately the 650mg dose of 5FU is almost 5 times the amount of Oxaliplatin that I will be probably be having from now on every fortnight.
The intention with the Cetuximab was to deliver 900mg in a 500ml saline solution over 2 hours, being reduced to one hour on subsequent sessions. Patients must receive an antihistamine and a corticosteroid at least one hour before infusion, according to the NICE guidelines. But I believe only 30 minutes went by before the delivery started and I had to remind the nurse that it was supposed to be a two hour, not a one hour infusion, at least to begin with. This uncertainty, along with the lack of time for the pre-meds to get to work, probably resulted in my body reacting strongly to the drug as this 'alien invader' attacked and after 15 minutes I very suddenly felt very hot and flushed. This common allergic reaction meant my face went a dark, crimson red and I was quickly surrounded by several nurses and an on-call doctor, who consulted with the pharmacy team and decided to stop the treatment after just 10% of the new antibody had gone in. In situations like this, the drug cannot be re-administered, kept for me or given to anyone else, so unfortunately it has to be binned. I dare not think what the cost of this is, but it felt like a waste. So a review of how this drug is to be administered in future will be needed - probably a lower dose over a longer period, with the antihistamine and corticosteroid taken the day before at home. So despite this temporary setback, there is a way forward. I have my next face-to-face oncology consultation on 5 February before the next longer infusion on 8 February.
In better news, the straightforward injections of Calcium folinate (Folinic acid) and 5FU (Fluorouracil), followed by the 2-hour delivery of a reduced dose of Oxaliplatin (150mg in a 500ml glucose solution), went well with few problems. There was a bit of vein pain towards the end, but no nausea this time and I was able to eat straight afterwards. Again, anti-emetic drugs were my take-away, for the next seven days, although there appeared to be less need this time. Also, like before, the peripheral neuropathy appeared in my arms and hands, mostly on the right hand side, where the canular was inserted, but nothing in my legs or feet, which some patients get. Finally, I don't think any bruising will be as bad as the first time, when the canular was left in for 24 hours as I stayed overnight. Although there has been some.
A Positive Attitude and Encouraging News
I am frequently reminded to maintain a positive attitude towards treatment. I get several messages of encouragement through writing and sharing my experience. Furthermore, the experiences of friends or their relatives means much more to me than anonymous posts in online forums with fellow cancer patients who I have little connection with. You can be positive and try to think positively without always feeling cheerful or optimistic. Feeling upset and frightened can be a sign of strength and, on the basis of comments I receive when I post, this probably reflects some courage in facing up to an uncertain future. It can help to try to change negative thoughts into something more positive when they come into your head, but this is notoriously easier said than done. There is little scientific evidence that this helps reduce the actual physiology. It might not result in actual changes or reduce the risk in itself, but it can certainly help to cope with treatment. So I brought back my sense of humour when in hospital on 24 January, as I need to stay on good terms with all those treating me.
I do feel that at my age, my body can cope with treatment, any adjustments being necessary and will still allow the chemotherapy to work. I was physically fit going into this, with no additional, underlying physical health issues. My allergic reaction was my own immune system working well and I am currently boosting this with a balanced and healthy diet, staving off any potential diarrhoea. I actually felt more positive going into the second cycle of treatment and I have begun to get better at synthesising all the medical information and knowledge, sharing my understanding with clinicians so that the right treatment can be given, challenging where necessary. I am also told that being informed, writing, sharing and taking ownership can help in this regard. It alleviates the isolation and frustration.
In further positive and tangible news, I was shown a printout (see photo below) on 24 January of my blood test numbers, comparing the ones carried out on 28 December, before my first cycle and 22 January, just before my second. A Carcinoembryonic antigen (CEA) test - not something I’d heard of before - appeared to suggest that treatment so far is working. A CEA (not UEA) test is used to check how well treatment is working in certain types of cancer, particularly bowel cancer. Carcinoembryonic antigens are proteins produced by the cancer and in response to the antigens, the body produces its own antibodies to help fight them. My antigen numbers appear to have gone down (1495.3 -> 1311.6). This is only an indication, a guide to whether treatment might be working, but this was really encouraging news to receive just a few weeks into treatment.
I have also finally contacted Macmillan about getting further support and been referred for free BUPA (Vita Health Group) counselling, although I might think that this is paid for indirectly by money raised during Sober October. My responses to the good old reliable PHQ and GAD questionnaires led to a recommendation for six sessions, once a fortnight, starting on 30 January. Interestingly, once I had signed into my account, the first leaflet shared by Vita was one about suicidal thoughts. So it must be common within cancer counselling and why I have included my own in this post. This service also helps to make up for the lack of local, impartial and professional support. I've had plenty of talking therapy in the past and I have recognised that I need it again. But I also need to return to more physical activity, too.
Stoma Activity and a return to ParkRun
As previously mentioned, I am in step 3 of Fittleworth's exercise guide to living with a stoma - up to 3 months since operation) or the 'strengthening' stage. On a friend's recommendation, I have joined a Facebook group - a worldwide group of 3.9K members. Potentially inspirational, but a bit like the forums in that I don't know these show-offs personally. Obviously having an ostomy does not significantly impact an ability to get exercise and keep fit. As long as that exercise is not too demanding, then this can be really beneficial. It certainly helps with anxiety and overwhelming depression. Last year a woman by the name of Gill Castle made history by becoming the first person with a stoma to complete a solo swim across the Channel. Heck, there was an even a young player called Mollie Pearce who reached the final on season 2 of BBC gameshow 'The Traitors', who was diagnosed with ulcerative colitis when she was 11 years old, had a stoma operation aged 18 and has since become a disability model.
There is much more scientific research that shows that being physically active during and after treatment can help improve mood, confidence and keep oneself to a healthy weight. There is always Qi-gong, too, which I was doing last winter and could try again. Even having access to TNT Sports coverage of the India v England test cricket series, which has just started, is helping me to get out of bed much earlier than just a week previously.
Macmillan state in their booklet, 'Physical Activity and Cancer' that along with having a healthy diet, being physically active can help reduce the risk of some cancer types coming back (p9). Being active before treatment, which I was, can mean fewer side effects or they are less severe. It can also help feeling more in control or recover more quickly (p21). Regular activity significantly reduces the risk of blood clots (which I've never knowingly had).
As you know, I was doing 5km park runs last year and had completed 23 of them by last October, when I stopped before my stoma operation on 4 November. It was too cold after my first cycle, and it was still a bit on the chilly side (4 degrees) on 27 January, but the Holkham theme was 'superheroes' - with all the volunteers dressed up - so I couldn't resist. I wore my faded Batman T-shirt underneath my 'Northern Movement' hoodie. So back to 5km runs - a 5KM to make the 5FU work better, I suppose. I took it easy, walking at the back with the day's tail walker, Katherine, up to the obelisk (1km), then simply jogged or walked the rest of the way. I suffered badly with the neuropathy in my hands, arms and face, but protected myself with several layers, gloves, a snood and my new 'beenie'. Coming way down in 103rd place and at almost 36 minutes, it was my second slowest time to date for 5km, but that didn't matter. It just felt great to get back to doing this and at the end of a week when I had chemo and an allergic reaction to treatment. I will volunteer as a marshal next time (3 Feb) and build up my strength again, gradually.
In addition to this, I have set my sights on completing a Macmillan Mighty Hike half marathon along the North Norfolk coast from Cromer to Blakeney on 12 May, along with my good friend from Leeds. Hopefully this will be both post-chemo and pre any potential surgery. I will start advertising and fundraising for this event on my upcoming 53rd birthday on 15 February.
Conclusion
These days, with my agnostic uncertainty, I prefer to think about what the more ambiguous Universe is trying to TEACH me, rather than the negative question of 'WHY is this happening to ME?'. I am not fully committed, however, to believing that the Universe will keep handing me difficult situations until I learn to be patient, or that it is challenging me through a difficult experience again until I become a better person, kind, grateful etc. Similarly, I have never fully believed in the phrase 'what doesn't kill you makes you stronger', although some ice cold baths in July 2021 were beneficial. We can learn good practices and we can learn from experiences, but we can also forget what we have learned. I certainly have forgotten lessons and techniques in respect of overreacting or managing anxious symptoms. And yet. I am moving forward with more positive intent towards my treatment and trying to be accepting of my situation rather than feel despondent. At least people still have faith in me.
The fight is back on. I choose life!
*note: The original post (shared on 28 January) stated that the 5FU was in a 500ml solution, but it is actually in a 25ml solution. This was corrected for this republished version.
References:
Cancer Research UK (last reviewed 2021). Can Stress Cause Cancer. Available at: https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/cancer-myths/can-stress-cause-cancer
Fletcher, J and Stott. D. (2021) Untangle Your Anxiety. (2021) Self-published / Printed by Amazon – available at: https://www.amazon.co.uk/Untangle-Your-Anxiety-Overcoming-Disorder/dp/B08YQM9SPY
Macmillan Cancer Support (2019, 5th ed). Physical Activity and Cancer. London
Macmillan Cancer Support (last reviewed 2021). FOLFOX. Available at: https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/folfox
Macmillan Cancer Support (last reviewed 2023). Cetuximab. Available at: https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/cetuximab
National Excellence for Health and Care Excellence (NICE, 2024). Cetuximab. Available at: https://bit.ly/4b7WnRz
NHS (2024). A Carcinoembryonic antigen (CEA) test. Available at: https://bit.ly/3UgjWS8
