Week 16: w/e 9th August 2026

Hello to each of you and thanks for tuning in once more.

Health aspects for the past week mainly focus around the wait for the treatment to start and as of last night, nothing confirmed yet. I have left a chase message on Friday morning and await a follow up to that. Whilst I wait on that treatment start date, I continue to deal with the side effects of the spread of the disease. The first half of the week was very sluggish overall, with tiredness and an increase in pain levels. The muscles at the top of my leg, the base of the left hand side of my back and also the middle rib area on the right side of my body, are the main notable areas of pain and discomfort, to varying levels. I have also had a light headache for a number of days too. I am unsure if this is Zometa related, or just the spread of the disease and the impacts from it. I have been using pain killers on and off, but trying to avoid their use overall. The rib discomfort is notable when sitting in certain positions, and gives me the feeling of being very slightly out of breath. My Appetite continues to be very variable, but mostly lower than before. Dr Rahman has set his phone call for the 18th of September, which must mean treatment is imminent? The phone message I left with his secretary at the end of the week, suggested that he moves the appointment, but also seeing if he can get the treatment started asap. The second half of the week seen a slight improvement, so my assessment is that Zometa was the main cause. I did undertake 2 walks and had times of 13:49 and 13:46. However, the second one gave me a number of residual issues. The walk up was fine and nothing of note (other than the hot weather!), but the walk back down resulted in my top right leg muscles and the lower left back producing discomfort and some pain. I decided to ease off for the rest of the week and did not undertake the planned 3rd walk. 

Alongside the physical aspects, there has been a notable increase in the psychological aspects for Sandra and I. I can see the strain and overall impact on Sandra daily and it is leaving her feeling mentally very tired. For me, I had a peak of anger and frustration over the weekend. I am angry at the situation overall and the impact of it upon myself and my family. I am also increasingly frustrated at how the AD-world increasingly affects our life. For us, 2026 appears to be a year of continuous tests, or waiting on dates for tests and then results, dealing with those results, then having more treatment. That has curtailed our ability to plan and actually do things and after many months of that, it is taking its toll. We have decided to adjust some of our plans and in the past week, have cancelled the accommodation connected to the planed ‘Vespa 80th’ weekend that we have tickets for. That is due to us being unsure of when the treatment will start and did not want to incur the cost of that (very nice) accommodation, without potentially getting the benefit of it. The reality is, travelling for 4+ hours one way, to sleep in different beds and not have the ability to relax in our own home comforts, whilst having 4 active days, feels too much for both of us. Sandra’s overall concern for me is very heightened and I can see that her worry about that trip is high, as is mine. At the moment, each day is variable and to travel for that duration and know that it is at least 4 hours before we could get home, If I find myself with increased pain and discomfort, does not seem sensible.   

Alongside that however, I have to remind myself that I am lucky to be 3.5+ years into this disease, one that takes many people rapidly, every single day. I also have to remind myself that whatever is unfolding currently is out of my control and it is just part of ‘my story’. I consider myself mentally and physically resilient, but to maintain that for sustained period of times is a challenge and that challenge is becoming harder, the further we journey through the AD-world. I am still very able and do focus on doing what I can, around how I feel each morning. I am grateful for that and know many, many people do not get the chances I have been given. 

On that note of still very much being able to do things, I have had a number of focuses in the past week, done around the physical aspects that the disease presented for me. On Thursday, we had to go and sort a new trailer for the group, with Woz’s help (thanks Woz). Sandra and I went ahead and picked one, then Woz transported it to the farm, where we put in into it’s storage location. A nice drive through parts of Kent we have never been to before and a nice change of scenery. That is one of the final aspects connected to the work started almost one year ago, where we began the process of selling off the group vehicles.  

I placed a key focus on assessing where I am with the Münkemer book and as a result, am currently rattling through the photo captions. Once done, I will step back and determine what may still be needed to complete that challenging book project. I also received some key updates from a fellow researcher in Europe, connected to the ‘117’ project. Some of those men are very hard to find details on, but I received two key file batches that concern two of them and their later war activities. More bits of the jigsaw in place and I also found the time to complete one of the most in depth ‘117’ biographies. 

Sandra and I also took ourselves out on Saturday evening and enjoyed a very nice Nepalese meal in one of the establishments not too far away. It is a place where we have enjoyed many meals over the years, but have not been to for a while. The meal had the right amount of assault on the senses / taste buds and helped lift the day for us both (this week's photo). 

In summary, a week of waiting, whilst dealing with an increase in health related aspects. Some time out and about, alongside more success with current book projects. Your time and support of these Blogs is very much appreciated. Regards

Peter