Advance apologies, some of you will already have realised the downward trajectory of this essay…Well, I have got bottom cancer.
On Valentines Day I completed 5 weeks of chemo-radiotherapy. Actually, it started as chem-radiotherapy and following a day of severe chemo caused side-effects, became just radiotherapy. I started to develop some side-effects to the radiation in the last few days of treatment, very fatigued and some skin breakdown in the targeted areas. I started to walk like a saddle-sore cowboy. And I called on my excellent team of volunteer drivers to shuttle me the 50-mile round trip for the last four sessions.
It is surprising how quickly we get used to new routines. 25 consecutive weekdays at the Beacon radiotherapy unit morphed from novel experience to be the axle around which my life rotated. I got to know the radiotherapy staff and accumulated enough loyalty stamps on my card to get a free coffee. And I got to meet several other regular patients. I am equally happy to sit and read or to chat with more or less anybody. As the weeks progressed, a small group of regulars on longer courses formed and we compared experiences and, to varying degrees, shared our life stories.
I met a retired royal marine band leader who had accompanied the late Queen on an overseas tour onboard HMRY Brittania, the owner of a holiday park, and the founder member of a local walking society. It is quite likely that we will not meet again but for a short period we were thrown gently together as voluntary radiotherapy inmates. I’m fairly sure that if we had been there longer, we would have formed a choir or amateur dramatics group as cover for digging an escape tunnel.
On my last day, I was chauffeured by a retired navy officer. It was a shoo-in that he and the marine were going to have much to talk about and they were soon comparing ships and experiences. As I was called in for treatment, my driver had progressed to the walking group founder who was roundly chastising him for his poor grasp of local geography! It was all quite lovely, normality in an abnormal setting, and I realised that I was going to miss this and the unconscious and invaluable support that we were providing for each other.
The radiotherapists cautioned me that the side-effects would get worse over the next week or so and sent me home with some special dressings, hydrogel ointment and a bottle of morphine! I guess that’s a bit more optimistic than a revolver and a bottle of whiskey?
I can confirm that the radiotherapists accurately forecasted the increase in side effects.
Before Christmas, I had a three-month course of chemotherapy and I have described how this got increasingly and incrementally harder. The radiotherapy was much sneakier. It lulled me into a false sense of security. It was only in the last few days of treatment that I started to get side-effects; some skin reddening, a bit of blood accompanying poos and a gradual increase in fatigue.
It felt that I was scarcely through the door at home after my last session, and KAPOW! The side-effects dial is cranked round into the red and that bottle of morphine suddenly becomes necessary.
Here come the graphic details…
I’ll break you in gently.
I have no feeling in the toes of my left foot. Quite weird. The consultant tells me that this is probably a result of the chemotherapy drip. This seems odd as I had the last drip in November and we are now well through February? I also have pins and needles in the toes of my right foot.
I no longer need to wax my bikini line.
Neither of the above necessitates reaching for the morphine. Five weeks of directing radiation into my groin has caused what the military euphemistically term ‘collateral damage’ to my testicles and penis. Small open wounds and very sensitive red skin. Hydrogel helps cool things down and I am developing various ways of attaching polymem dressings to these very three-dimensional appendages. Medi-honey helps reduce the redness of unbroken skin.
The radiation has also damaged skin on the other side of my pelvis. Having a poo is an extremely painful experience. And fixing a dressing to this area is pretty much a case of cut to approximate size and pop it between the cheeks. Hydrogel provides some relief but there is always blood when I go to the toilet.
I have some medical training (qualified outdoor leader) and several close relatives are professional medics of various sorts. I am cautious about morphine and well aware of its addictive nature. I am limiting my intake to those times when I experience the most pain (yep, we are talking poo time) and I am mitigating the pain at other times with paracetamol and ibuprofen.
I am fatigued all the time. I am making myself get up, dressed and out to do something physical every day. It would be very easy to curl up in a ball of self-centred misery and this is certainly the most beat-up that I have felt in the nine months since I found that lump at the top of my leg. I have mentioned before that my prognosis is very challenging and that my strength in facing this has come from the support of those around me. I have never felt alone and every day that I can get up and do something is a plus.
I now have a two-month period when the radiation will (in theory) carry on reducing the tumours and when I will have no treatments. Scans in April will reveal progress and dictate next steps. Once I am through the next two difficult weeks, I will rebuild some fitness and do some ‘normal’ things! So, this marks the end of part three of my journal. I will fill the interlude to part four with some entries that are not part of the journal’s timeline; these will include ‘Hospital Trip Adviser’, ‘Hospital Bingo’* and my personal ‘life admin’ guide.
(* hospital bingo was introduced to me by a very creative niece)
20th February 2024
