Wow, chemo five! Only one more cycle after this one, it really does feel like this part of my journey is coming to an end.
Preparation: ‘Dexa’ consumed and I’m ready to go. As always, a combination of mild excitement and anxiety about what’s to come. Even after four cycles, and with pretty good outcomes as far as side-effects go, I am not complacent about the potential impact of the ‘Doce’. I am fully prepared for all possibilities!
Treatment: I arrived a little early for my chemo, but it seems it was a light day, I was ushered straight into a chair. As I was waiting, a nurse came around with a little basket of gifts which had been prepared by a previous patient who wanted to give something cheery and useful to patients still undergoing treatment – some herbal tea, lip balm, a face-mask, some boiled sweets – how kind and thoughtful. Next, cold cap on, chilling commences – I must be getting used to the ‘brain-freeze’ because I hardly noticed this time – then saline flush. This time I had an ‘aperitif’ of Zoledronic Acid, this is for my bones, according to NICE: ‘the bisphosphonates are adsorbed onto hydroxyapatite crystals in bone, slowing both their rate of growth and dissolution, and therefore reducing the rate of bone turnover.’ To put this into context, here’s the list of common / very common possible side-effects from Zoledronic: alopecia; anaemia; appetite decreased; arthralgia; asthenia; chills; constipation; diarrhoea; dizziness; dysphagia; electrolyte imbalance; eye inflammation; fever; gastritis; gastrointestinal discomfort; headache; influenza like illness; malaise; myalgia; nausea; oesophageal ulcer (discontinue); oesophagitis (discontinue); pain; peripheral oedema; renal impairment; skin reactions; taste altered; vomiting. Quite a list, and there are further uncommon, rare and very rare side-effects as well. This is all in addition to the potential side-effects from the ‘Doce’ and the six other meds I’m taking. As I’ve already said, I’m not complacent, but not overly concerned either, I’ve been doing well, but I am prepared.
‘Zolly’ in, now we move on to the ‘Doce’. It was a very friendly shift on in the ward, they were clearly having a nice time with each other and were very jolly with the patients, but they were a little slow. No problems with the infusion of either. My bag of meds was ready to go post-treatment, a large bag with my Daralutamide (second-string hormone treatment), Domperidone (for nausea), Prednisolone (a steroid), Omeprazole (to mitigate some of the side-effects), Dexamethasone (for my next cycle) and Filgrastim – more help for my white blood cells.
Day 1: it’s my birthday on Sunday, but I anticipate being out of action then, so I celebrated by birthday yesterday evening with my gorgeous wife, my wonderful friend Jeremy and our nephew Ronan, who’s just arrived from Australia. We had a lovely Thai meal and then a music jam in our garden – what fun. My tiredness and ‘leaden’ limbs started on Friday and by today they are well established, but not hard to manage. I was feeling quite sharp in the morning and we have little problem with the chemical plant that is central to the on-going training programme we are currently running for the OPCW. As I designed and project managed the installation of this plant, I am probably in the best position to tackle these problems. So, I spent the morning engaged in technical problem solving concerning pressure measurement in the process – very interesting for me! The rest of the day was a combination of sleeping, a little streaming and arranging songs for our expanded ukulele books – nice.
Day 2: HAPPY BIRTHDAY DAVID! 61 today, I’ve been reflecting a little on my 60th birthday, we had a fabulous celebration last year. It’s sobering to think that my cancer was probably starting, albeit entirely symptomless, when I was celebrating that milestone and looking forward to the next milestone at 70! That seems an impossibly long way away now, but it would be a tremendous goal if I achieved it given my diagnosis, I’m going to do all I can to get there.
Day 3: Filgrastim yesterday evening, although I’m getting used to giving myself injections it’s still a little daunting. This morning, I could feel the ‘Filly’ in action, a significant ache in my lower spine and pelvis; reminiscent of the aches I felt prior to my diagnosis. I’ve spent the morning a reflective mood, probably prompted by my birthday yesterday, there are both ‘good’ and ‘not-so-good’ things to reflect on. I spend a fair bit of time thinking about ‘living’: what I am doing / going to do, how I’m feeling, how people feel around me – most importantly Shirley. I also spend time thinking about ‘dying’, not so much the process - that will become apparent as things progress and there will be time then to consider that then – more about the idea of not being here anymore; it’s a strange thought, one I won’t have to deal with directly, but those around me will. I think about that fair bit, I do feel sad that I will be the cause of that reality for others, Shirley and Cassidy in particular.
Day 4: quite down today, the ‘Filly’ is definitely having an impact this time, it’s not at all bad, but it is constant. And it’s a full work-day today, only a half-day yesterday. Today is all about personal development, working in teams, leadership – the core aspects of our training business. Lots of exercises and activities, a little more relaxing for our participants, a break from the complex technical and practical elements of the programme. A day to cheer me up and give me purpose - I hope!
Day 5: up very early and into the university to fit pressure gauges to solve a technical problem on the plant, I used up a lot of ‘spoons’ – have I mentioned ‘spoon’ theory before? I had a full canteen, but I used a least a ‘ladle’ on the plant. ‘Spoons’ are a measure of energy – Shirley is a big fan and is training me in ‘spoon’ theory at the moment. Although I did use up a lot of ‘spoons’ early on, I had enough left to enjoy a fascinating afternoon with the participants and then we all (staff and participants) went to the local pub and watched the eclipse – great fun and I’m feeling much more positive today.
Day 6: pretty much back to my old self now, these periods of getting down come and go and typically last two to three days. To be honest, I’m not used to feeling like that, it was not part of my ’old’ life. But I use my positivity to work through it, whilst also recognising that it’s a necessary and important process in and of itself. The reality is that my situation is sad – no point in denying that – many people in my life are sad for me and sometimes they are sad for themselves as well, Shirley is the most notable case in this regard. I do love her so very much, she has been off-the-scale amazing. Thank you my wonderful Shirley.
