This is the first conventional update for 2024, as last week’s was focused around the ‘2023 Review Poem’. This also includes the first parts of Sandra's insights and observations, which are at the bottom.

The first day of 2024 began with the lurgy, which is doing the rounds where we live. With the reduced immunity, Sandra and I watch normal illnesses much more closely. This one made me very tired, but was also an ‘alternating day’ impact, where one day was filled with a lot of tiredness and sleep, the following day was more manageable. That carried on for around 7-8 days until things settled down, with a few remnants remaining.

Regarding the impact of the cancer, this remains as it was, lower back pain, which is variable. Alongside that is the ‘rusty fingers’; again, variable but something I am working around. There is also a lot of disrupted sleep at the moment, which makes the day that little bit harder to get through, as the rest from the day before has not been as complete. I have no real identifiable cause for that and I am hoping it settles down.

I had my first set of blood tests during the past week and thankfully, renewal of medication. As discussed pre-Xmas, these are the main focuses now, as the blood tests should show up any increases, which may impact whether they renew my meds. There is always a feeling of relief when you do not get a phone call during the 2 interim days between the test and the return trip to collect the medication. When talking to the nurse, she reminded me that my next phone consult with Dr. Raman is the 5th of February. It will be interesting to see how stable things have become and therefore, what impact that may have on the frequency of the blood test and meds renewal.

During that first week of this year and thankfully, on a day were I felt better, I had the chance to meet up with Howard. That meet up was one that was postponed pre-Xmas, when I met up with Matt and Simon. We had a great evening and a nice chance to catch up on all key aspects of what our lives are presenting us at the moment. We both have life-changing medical situations that have altered our mindsets, focus and analysis of the past. Our situations are very different, but there are many similarities  with the challenges faced and how we have navigated those, to date. As touched on previously, Howard was my boss for more than 10 years and I enjoyed working with him and learning from him. We became friends and have spent many memorable evenings out. Our lives have changed immeasurably, over the recent past, but our joint ability to pick up where we had left off, share experiences, provide mutual support and just have a genuinely enjoyable evening, was great.

That weekend, I indulged in some outdoors DIY, necessary as our neighbours of more than 25 years have moved and we are awaiting the arrival of the new ones. I had to make some adjustments to the garage drain pipes. That was done in confined surroundings and some awkwardness, which had a more notable impact than it would have done before. I always enjoy that side of things and will tackle almost all tasks needed in the upkeep of a home. It is the residual impact on my body that takes longer to recover from.

I had another hair cut a few days ago and during that, my hairdresser of 25 years commented on the notable changed texture of my hair; in his words, more of an Afro-Carribean texture, which comes with a wave, which is all new. He also commented on how much stronger it had become, even since the last hair cut around 5 weeks ago. I therefore used shampoo for the first time in around 6-months. Up to now, it has been a case of using lots of water and letting the shower run through it much longer, to compensate for the inability to use shampoo (my last attempt many months ago, resulted in some instant bald patches, which thankfully grew back). Again, daily and simple tasks which I would have given zero thought to previously, now take on a much bigger significance and analysis.

In general, and covered off when with Howard, my plans for 2024 continue to evolve and I am keeping an open mind to what comes after the end of April / into May, when I plan to officially retire and begin to draw on my private pensions. Whether that comes with some part time work, will remain to be seen. I certainly have an ongoing and growing list of things I would like to focus on when I reach that point, but will see how the health unfolds, plus what other developments may come about. The pace of potential was interesting as 2023 drew to a close and 2024 so far, has not altered that. The potential direction is expanding, which is interesting and exciting, but I am relaxed, confident and content with what we know can happen and also what may occur this coming year. We have also begun to make a list of potential places to visit, UK and maybe further afield?

In summary, what we are planning currently, would never have been considered pre-cancer, but our current horizon is one we are looking forward to, within the restrictions that the disease does, and will, bring.

Thanks for the many comments on the poem, plus the best wishes for the coming year, which have come in since the start of January. Deeply appreciated and the ‘community’ created around this, continues to expand.

Regards

Peter

Sandra's view - living with a cancer sufferer.

As touched on previously, some of those closest to me, have taken the time to share their thoughts on the impact of me having cancer on them. The one person who has not got to that stage yet, is Sandra; that is, until now. Those that did share their thoughts, did so around the central question of, ‘better to know, or not to know’. Sandra is not in a psychological position to share that with anyone, other than me, for the foreseeable. However, I asked her if she would mind sharing what life is like for her, living side by side with me, as we both chart our way through this disease. Below are Sandra’s thoughts on that, as we move towards the end of Year One. Her thoughts are done in the order of those aspects that are the most impactful for her.

(Sandra's thoughts now)

This has taken a long time to write and it is not quite finished yet as I’m not great at putting my thoughts into words. I tend to internalise things and have never written about how I feel, so doing this is a challenge in itself, so bear that in mind when reading the below. Added to that I am having to write about the demise of my husband, my best friend; not easy!

Constantly on edge: Since we were told back in January, that news started a never ending series of, ‘what is coming next’ for Peter. Not knowing what to expect, something that was explained at the outset (all of us unique, impossible to pre-determine the extent of the side effects, etc.). That has developed into an unsettling unease that is constant and without respite. It is mentally tiring thinking like this all the time and this in turn has Peter constantly concerned for me, as he can see the impact upon me, of me watching him and everything he is going through. Living next to him, having spent nearly 40 years together, it is very hard to see my best friend, soulmate, the person I thought I would spend the rest of my days with, go through something that you know you can do nothing about. I know I cannot make it any better and that is one of the hardest aspects of this to deal with.

Not wanting to leave Peter alone: From the point of Peter being diagnosed, right up to the end of July, I was able to be alongside him daily. The job I had then was a home based one (part-time) and I was therefore able to be there during the first 5 months. This allowed me to go to all of his appointments, drive him to and from work daily and be there at a moments notice if something was wrong. Being able to do this during this period, to me, was psychologically essential as this was one of the few things I could do to help Peter during this very challenging time. My role then changed to a full time office based one and the mental challenges that this brings are hard to deal with. I’m not just around the corner if something goes wrong, and he needs me. I’m not able to go to all his routine appointments with him, which may sound normal to those of you reading this, but it is exceptionally hard. For me it’s the small things that matter and being there for him as he has been for me, is the single most important thing.

Even now, when Peter is more stable, thinking about going out with my friends makes me stop and ask myself, do I really need to do this! I feel that I need to have a plan in place, have our daughter, son-in-law or son come and sit with him for a few hours, so I know that he is not by himself. This is my way of being able to go out for a bit and get back a little bit of normality. Peter is constantly telling me to do this, but actually doing this, making plans for me, is so much harder as all I can think about is him. I don’t think this will get any easier as time goes on.

Watching the changes: In 1994 I suffered a fall, which badly damaged my knee, on Christmas Eve. This took longer to heal than a break and when they investigated that, it transpired that I have osteoarthritis and needed a knee replacement. As I was only 26 years old they wouldn't entertain the idea of doing this until I was considerably older. The result of that was nearly twenty years of pain and inhibited movement/fitness. I had a knee replacement done 11 years ago, followed by a hip replacement a year later, due to the fact they had left it so long. This has then resulted in me having back issues. Since 1994 the impact on me and my quality of life was notable and that of course had an impact on our family life, what we could do and Peter looking after me all that time. I always felt like a burden to Peter and the kids as we had to choose what we did and on many occasions we had to cut things short. During all of that time Peter has watched my health decline and we were always of the opinion that I would go first. Alongside that is me, watching Peter shoulder the bulk of the burden of what had to be done around the house and with the kids while working full time.

Why tell you all this? 2023 has seen those roles rapidly reversed. Whilst Peter has watched my decline for twenty years, I have watched his rapid decline over a few months, not an easy thing to see. Not just for me, but the impact that I can see etched all over Peter’s face as this is not what was supposed to happen. He is known in our family as ‘our rock’, the person that we all lean on, for everything. For any of you that have gone through chemo, or know someone close to you who has, will know the severity of the debilitating effect of it.

One of the most notable changes has been his tiredness. Peter is well known for never stopping, from he opens his eyes until he shuts them, on the go all the time, whether that is working, writing or doing things around the house alongside family things. Now, small tasks leave him feeling tired and he has to pace things differently, which I can see is mentally challenging for him. Alongside that is the physical ability to do things, which is variable. This can be as simple as opening a button on a shirt, a can of drink, and a big decrease in his mobility overall.

We have both seen a series of changes to his body, the shape, the loss of hair and now the texture of his hair as it is growing back. The pallor of his skin, which I monitor closely as it is a good visual indicator as to how he is feeling at any point and time. It has changed dramatically over the course of the last year and, in Peter’s words, “the dug up look”. One of the hardest things I have had to watch is Peter sitting with a plate of food in front of him, just staring at it, and when I asked him what was wrong he answered that he was physically trying to force himself to lift the fork to put the food in his mouth. I had to balance watching this unfold, whilst trying to motivate him to eat, alongside watching the most important person in my life struggle to do the most basic need; for me, one of the hardest aspects of this illness to watch.

Going back to the physical side of things, going out and about, I have seen a dramatic change. At the height of the treatment, we did nothing, went nowhere, apart from going back and forth to the hospital. Jumping forward, post chemo, from our trip to York and then Winchester, a gap of only 6 weeks. Peter’s ability to walk around, sightseeing and enjoy the things we did before 2023 was notably different, to the point of us having to cut short our Winchester trip. Normally it’s me that needs to cut short our trips, but I could see that he was really struggling. Peter being Peter, he was adamant that we were going to see the remaining sights we had planned to. I had to put my foot down and insisted that we went straight back to the car and made our way home; a hard reality but the right decision.

There are other aspects I would like to cover, so hopefully I will have them ready for Peter’s next instalment!