Week 17: w/e 2nd August 2026

Hi Folks, welcome to the current update and a lot of key information to go through, directly related to the disease and what it is doing to me currently. 

The week started with the repeat blood test to determine whether the Zometa would go ahead. Those results showed the liver markers still up, but after they checked with the consultant, he confirmed that the Zometa infusion would go ahead on Wednesday (it did), then also to go ahead with the 3-monthly hormone injection at the GPs; he also repeated the need to not take any of the darolutimite tablets. During that Wednesday infusion of Zometa, I asked for the updated PSA level, but they told me that they did not have it yet. The Zometa infusion was straight forward, and I took measures to try to off-set the effects I endured the first time around. That was the taking of paracetamol each day, starting in the afternoon of the infusion. Whilst I have not felt 100% since, I have certainly not had a repeat of the very variable and impactful side effects I had the first time. 

Friday midday was when we met with Dr. Rahman, for him to tell us what the recent scans detected. During that morning, the tension and stress levels were very high, for Sandra and I, as each minute passed and we then undertook our journey to Canterbury. Personally, I was not apprehensive, but more focused on just finding out what the situation was, so we could determine what was to come next. As he has come to know, I prefer being straight to the point, so he did not hang aournd in giving us those results. My PSA has hiked up to 143, which was ‘interesting’ to hear (more than twice my start point level - and that was “off the chart” - guess they need to draw a new one……..). That was quickly followed by the ‘main event’, which was the spread of the disease. We discussed what the PSA rise meant, alongside him telling us that my lymph nodes, which reside between my abdomen and spine, have increased in size (that is what is affecting my appetite. The disease has spread further into my bones, at various locations, but mainly around the top of my right leg and underneath my groin area. We seen the 6-month comparison scans later in the conversation and they were very impactful indeed, with the size of the metastasized area being notable. The outcome is that he wants to get another round of chemo underway, asap. That will be the same type as before, 1-hour infusions, and he will monitor the neutrophils throughout, to try to avoid a repeat of last time. It is now a case of waiting on the first appointment for that, and he was clear that we need to get started very soon. 

We focused on what he told us, made notes, then left to go back to the car. We were certainly happy to know that something can be done. However, I am not looking forward to going through chemotherapy again. You may recall the impact it had, on every aspect of life. We are very glad that Dr. Rahman is confident that the chemo will give me more life. As part of our catch up, I did check the estimated timeline and reminded him of the original 4-5 year on (we’re 3.5 years in). He argued those numbers, which we counter argued! However, reluctantly, he indicated a 4-13 year timeline for me. What he is seeing is average and his confidence in the planned treatment is high. What we do not know is how it will impact the current growth of the disease. We will get underway and see what develops. 

Our first calls were with Karl, then Alanna and both updates were emotional. Karl, Alanna and myself had an expected timeline of Xmas this year, if that! Sandra was not on that timeline, but was expecting an ‘end of the line’ type conversation. We stopped by Alanna's on the way home, to have a quick lunch, but whilst there, had a conversation with the grandkids, led by Alanna and Dan. The rest of the day was spent updating those closest to me. That was alongside the two of us adjusting to what he told us and what is coming next - which we have been through once already and know how impactful it is; that adjustment continues. 

The mental impact on Sandra, Alanna and Karl has been very evident and Friday’s news unleashed even more - relief of sorts, but reality too. Living through this disease and dealing with the physical and mental aspects is very hard for all of us. There is no respite for us and the depth of the mental impact has been deepening as 2026 has unfolded. For me, it is hard to watch that increasing impact on the family and it is an aspect of this disease that is inescapable. We had a phone call from the grandkids on Friday evening, in which Jameson had a series of questions to ask, with Keeley also sharing her (almost) 5-year old logic - without filters! That was hard going for myself, Alanna and Sandra, but we have told them to always ask whatever they want to, in order for them to understand what is happening, and they certainly did in that call! What comes next will add to that, but given the alternative that may have come from Friday, we’ll take it!

The discomfort is increasing and it is just on the edge of starting to become painful, with the groin area and now one of my right ribs, being the main focus. I continue with my exercises and I also conducted 3 walks this week, with times of 13:46, 13:49 and 13:30. We also had physio on Monday and his main focus for me, was on my middle back; he will see me again in 2 weeks. 

As you can imagine, it was a very variable week, with unplanned appointments, which dominated the week. Limited focus on anything else and the book related work was more on fulfilling orders - now that I have had the full sets of WSS Knights to promote. 

We did have the chance to meet up with the girls and everyone was able to attend this one. It was a very enjoyable evening and great catch ups from everyone. There was almost  an ‘incident’ when we were informed that there was no meringues for the Lemon Blizzard desserts (at least 3 of us had to draw breath and contemplate our life choices! After much soul searching, I opted for the ice cream sundae, to then be informed that the ice cream machine has just packed in……………by then, I was threatening to go into the kitchen, wearing a balaclava and using my best Belfast accent, to determine just how quickly they could rectify that; I once again took stock and brought myself back to 2026. I finally settled on some apple pie for asked for it not to be heated, just served as is. That came out still frozen…………..by now, all we could all do was laugh and I got some heated apple pie instead. The very patient waitress did take the time to hand draw me a small Lemon Blizzard, to as not to feel left out. (This week’s photo)

There was an aspect connected to my health developments, from this. The meal was very nice and even the 4th choice dessert was good. But as the evening came to a close, I was starting to feel unwell. We dropped Jennie off home en route, then by the time we got to our home, that feelings had increased. My heart rate was up and it felt as though my body was having to work really hard to deal with the larger intake of food. This may sound a tad dramatic, but that is what things are like at the moment. I find that I simply cannot consume the same amount of food, without encountering issues like this. We did discuss the whole ‘waistline’ issue with Dr. Rahman and he told me that the medication that I have been on since the start, will add at least 2 inches to an average waistline. When I told him that it seems to have changed this year, he did say that was normal and it does not always impact from the outset. I have been very self conscious about this, for some time now and have not liked some of the photos I have posted as part of the Blogs. It is however, as aspect directly connected to the first situation, and now being exacaserbated by the increased lymph nodes. I have cut down my food intake in the past month or two and continue to do so, but am not seeing any waistline benefits just yet; that fight continues.

We rounded off our dramatic and remaining life defining week, by having time with Alanna and the Grandkids on Saturday (nerf gun action was the main activity!), then Karl, Rachel and Rachel’s mum Sue with us for a chunk of Sunday. We had a nice lunch with them, then Karl and I done a little work on his scooter. 

In summary, we now know where we are, have had confirmation of what I have been feeling, and now await what comes next; the friends and family time have been nice high points, during an otherwise changeable and challenging week for us.

Thanks for all of last week’s support and messages. 

Regards

Peter