Firstly, some of you will have noted that there was no update last week and a few of you contacted me to check in, thanks.

The reason for the lack of update last week was simple, it was a ‘normal’ week, as much as I can count a week as ‘normal’. No dramas, no major updates or changes. With that in mind, I did not want to bore you all with going through a fairly uneventful week (something I have touched on and obtained your feedback on). However, more to update you on in the week that has just ended.

The past 7 days began with our latest catch up with the Consultant and we agreed back in August that it would be a phone call catch up, as it was mainly to discuss medication. We did that and the outcome is no change to the planned, continued oral hormone medication. I have my next blood test this week coming and he has asked for a PSA test update, as the last one was in July (reading 0.5). He is continuing to monitor my other levels, through the (now) monthly blood test; he is happy that everything has settled down. The short term plan, besides the oral medication, is to stretch out the timeframe between each blood test to 2-months, in the New Year, if the levels remain normal between now and then (the next 2 tests).

We asked him about some key aspects, which included the continued feet and hand sensitivity. He confirmed that it was still the remnants of the chemo and he is confident that it will eventually stop. I do hope that is fairly soon, as the sensations are more notable over the past few weeks. I also mentioned the ongoing back pain, but in his opinion, that is nothing to do with the cancer, based on the August scan results.

That led us nicely into what comes next, which we asked him. He confirmed the above ongoing oral medication regime, the 3-monthly hormone injection to keep the PSA at bay (the male menopause inducer!), then the plan to extend the duration between each blood test. At that point, he was about to end the call, but we stopped him (Sandra had left work slightly early that day to ensure she was with me for the call), and asked him - for us - two key aspects.

The first was how often scans would take place. His reply was that he has no plans for any scans. The KEY measure for him is the PSA level, closely followed by the other levels, which he will monitor each time they are done. If they stay stable / low, he considers no need to conduct scans or the like.

The second was the impact on the prognosis, based on the fact that he plans no scans for the foreseeable future. He confirmed pretty much what he did the first time we saw him in January. That was, “several years’, but he went on to say, “how long is a piece of string”, which took us by surprise. He said, “3, 5, 8, impossible to say”. With that, the call ended.

Following that, we both got emotional. Whilst we did not expect anything too dramatic (as no scans had been done, etc.), we did not expect the ‘normality’ and ‘lack of concern’ that was evident throughout the call, which lasted less than 10 minutes. We also felt a bit of a ‘void’, immediately following the call and what was discussed during it.

The whole raison d'être for this Blog, is to help others going through similar situations (not necessarily the exact same disease) and try to make sense of a life changing situation such as mine. One key aspect has been trying to find helpful information, which has been challenging. Another key aspect, following the initial confirmation, absorbing that news (not processing it - this cannot be processed!), going through the chemo and all the ups and downs of that, alongside the impact on the immediate family and those close to me, is, ‘what’s next’? No-one really tells you that, but it is such a key psychological need, when in a situation like this. We seek clarity in a situation that cannot provide exactly that. The deciding factors are too numerous and dependent on the individual biological and psychological make-up of the affected person.

So, what is next? We have not had the time to really discuss that, but in the short conversations we have had (busy week for us), we will be trying to be as normal as we can. You may ask, why do I keep mentioning ‘we’, when it is only ‘me’ who has the disease. As highlighted many times, Sandra is with me daily, without respite, and is going through this with me, in every single sense. What comes next is something that ‘we’ will experience together, alongside my kids and other close family members.

The back pain is there, as are the issues with the leg muscles, which are more evident of late, so our thoughts are turning to what I can do to counteract that, like I have done with the exercises to help improve the use of my arms. Besides that, we have begun to think about the future a little more than before, make some slightly longer term plans, but we will do that alongside the restrictions that the disease has brought. A very strange ‘void’ to be in, not knowing what is coming next, alongside the Consultant who has only ‘routine’ plans in mind for me, unless my levels change. But hey, let’s go on with it!......whatever ‘it’ is…………

Our ‘Goldilocks’ moment, regarding our all-important mattress change, moved a step closer at the end of this week, when we narrowed our search to a final choice, driven by our recent experiences of our incorrect choices. A couple of weeks to wait on delivery, but a step closer to hopefully finding enhanced rest each night, which sets both of us up to meet the challenges of each subsequent day.

It was a key week also, regarding my employment. My colleague, Martin, and I, have been assessing the site we operate from and the decisions being made around the wider business, with our conclusion being that we expected the boss to tell us that they would be closing our site. That confirmation came this week, which was no surprise. We now have a timeline of around 6-months, with some clarity around what we need to focus on in the remaining time frame. As part of that wider discussion, I also informed my boss and other senior peers of my connected decision, regarding my longer term plans with the business I am currently working for. One thing that this disease has helped me focus on, is what Sandra and I regard as important and what aspects in life no longer hold the importance they once may have, or cause more distress than we need. We have made a number of key decisions to refine our focus on positive aspects within our lives and family. That same choice process was applied to my longer term decision, when the 6-months draw to a close.

Why share this aspect with you all? In the not too distant future, I will be in the position of seeking a new role (that situation is of my choosing, driven by the need to remove my partial interaction with negative individuals). That search for a new role will involve all of the aspects you will all be familiar with, applying, hopefully making it to an interview stage and ideally being offered a role with a new company. However, at the point of being offered a new role, I will need to inform a prospective new employer of my terminal illness - something that will arguably halt the recruitment process? I am about to find out and will of course, update you all here. This is another key aspect and concern, when working through the various impacts of having this disease; another ‘unknown’ and ‘no idea what comes next’...........

Last, but not least, is the current focus on my next book, which reached one of the main key phases, very closely followed by the second (not concluded, but ongoing), and now I am in the third and final stage of completing the next book project, which I am aiming for the end of December. Writing books has been a passion for 25-years now and that passion has been of key help since my prognosis was first shared with me; a really useful tool in this battle so far and it will continue to be so, for as long as I can.

A longer than usual update, which followed a week with no update, but driven by a ‘busy’ week in many aspects. I hope you find this of interest and helpful too.

Thanks for your continued interest and support. It is helpful to me beyond measure.