Hello to you all and hope you’re enjoying Mayday.

For me, the past week was another cautious one, as the unknown of the radiotherapy side effects remains. They have started to increase, but nothing drastic just yet. The right hip area has more pain than normal, and the tiredness is there, but not heavy, just notable that my ‘batteries’ are not lasting as long as usual. Despite retiring 2 years ago, I have maintained my routine and get up at the same time every morning, as I did when working. I then plough through whatever is on my list, as you read about every week. From Tuesday onwards, I am then finding I am more tired earlier in the evening, so we are going to bed a little earlier; will see how that unfolds. The ‘cold’ that arrived at the end of last week is certainly with me this week, but as stated then, impossible to confirm whether this is due to the treatment, or just a normal cold?

I had my 3-monthly blood test on Monday, then collected my tablets and had my first Zometa (bone strengthener) infusion on Wednesday. During that, I had confirmation that my PSA is at 32 - not really a surprise and expected it to be around that number-ish. That infusion takes around 20 mins in total - with a flush, then 15 mins of the actual infusion itself. A fair amount of new aspects to the AD journey lately, but it's a case of getting on with them and seeing if they have the desired impact and help me stick around a little longer.

On my way to bed on Wednesday night (about 12-hours after the first Zometa infusion), I started to feel very cold, The onset was very rapid and throughout that whole night in and out of bed (3 trips to the toilet), I experienced a long bout of shivering, high temperature and head to toe pain. That pain was muscular and made moving in bed a real challenge. That situation remained throughout the day, only eased through pain relief tablets and trying to move around more. It wiped out Thursday, which was spent on the sofa, with me sleeping on and off, alongside changes in temperature; it felt like a heavy flu in every respect. Sandra looked up the side effects of Zometa and that is one of those, which can usually arrive within 3 days of the delivery of the infusion - mine waited 12-hours. Sandra remained at home on Thursday and watched me like a hawk, alongside looking after anything I needed. For both of us, a hard day.

Friday carried on in the same vein, but with a reduction in the overall body pain. The one unmovable pain point is the centre of my sternum, in a very defined and small area. It is restrictive and makes rapid movement difficult, and as for bending over to pick anything up - now there’s a challenge! I have an intermittent throbbing light pain in the exact area where the new growth is residing. My appetite has been notably suppressed during Friday, Sandra remained at home on Friday too.

The weekend began with more broken sleep, a decrease in the sternum pain, but the introduction of a fuzzy head, which resulted in another sofa day. That evolved into a tightness around the top of my skull, together with dry / irritable eyes. The sternum pain eased, thankfully, but was then replaced with pain along the top mid part of my spine, since Sunday morning - directly opposite where the sternum pain is. So, the ‘bingo card’ for side effects from the Zometa infusion (or could be delayed radiotherapy) is being filled up nicely. The slight return of an increased appetite appeared on Sunday late afternoon; will see if that carries on.

Sandra remains on tender hooks and watching how things unfold / checking on me constantly.  She would much prefer to be with me more than currently, which is understandable. We are aware that my time is limited, so we want to enjoy what time we have together, as much as possible. Another challenge of living through this disease and the impact beyond the person who is receiving the treatment / fighting the fight. Sandra has already made the decision to reduce her working hours. A necessary change for her and a sensible one for us, when we step back and review where we think we are in the overall journey through this disease.

When we step back and take a look at what the past (almost 3.5 years) has brought, that has included the diagnosis, then the hard hitting prognosis. The follow on was the very impactful chemotherapy, then the minefield of assessing every small change and thinking the ‘end is nigh’. More up to date has seen the introduction of radiotherapy and the new Zometa infusion, which has brought this inescapable bout of side effects. All of those treatments have introduced ‘alien’ concoctions into my body and all with a view to extending my timeframe. The unknown at this stage is, will they work; we know the first combined treatment of chemo and Darolutamide tablets has produced favourable outcomes. We now watch and see what comes over the unfolding months of 2026.  

Besides the fun week of ‘wait and see’, followed by, ‘okay then, we’re in this’, I did work through more book related items, with some more key ‘117’ biographies being covered off; they’re fascinating and I know they will resonate with many of you who follow that same historical era that I do. I also received the recently mentioned ‘117’ items from Europe - great additions to the collection and a nice poignant set of items, directly connected to one of those former soldiers.

Thank you for the regular time you give to these.

Regards