As a direct follow on from where we left off last week, this week was mostly ‘hospital shaped’. I remained admitted to hospital from Monday through to ?????. The routine was blood pressure and temperature checks (the temperature of 38 was why we made haste to the hospital on Sunday morning), which thankfully both remained where they should be. Blood tests were done daily and the Neutrophils went up to 0.2 on Monday, then 7.8 on Tuesday (7.5 is normal), they did not give me a reading for Wednesday, other than say they were normal. Bearing in mind they told me they would release me if they got to 1.0, my hopes of a quick release from hospital did not materialise. That was down to the strong course of antibiotics they placed me on, which can only be given intravenously, with a plan of 20 infusions, taking me up to Friday morning. The main part of the risk to me, was that of sepsis and infection and the attending doctor used the term ‘special case’, hence the side room to be away from everyone and the use of the strong antibiotics. Going back to the first instance of high temperature, where I took no action, then had the potential severity of the consequences explained to by every medic who sees me, I have come to understand that one of my biggest threats is sepsis and infection, so being treated for that potential ensured Sandra and I made the right decision on Sunday and that I was in the right place.

As touched on last week, being admitted was a mental struggle, having to remain in for as long as I did, was very hard, especially on Tuesday. After being told that I would remain in, despite the 7.8 reading, was a tough message to get my head around. My main concern from Sunday is, what is this?, why is my body now behaving like this?, is it declining further?, are things worsening / will my remaining timeline be shortened?. Up until Tuesday afternoon, those thoughts were filling my head frequently. On Tuesday afternoon, I was visited by 2 oncology nurses. They explained that the loss of the Neutrophils is common and they informed me that I should consider myself lucky not to have been hit up to now, some people get that side effect after their first session of chemo. The impact of those words went far beyond any literal meaning. They lifted my mind from some worse alternative explanations and gave me a boost.

The time in hospital was odd, as besides the rounds of checks, blood tests and infusions of antibiotics 4 times a day, I felt fine with no pain or other symptoms. The majority of each day was normal and I carried on working remotely with my day job, then in the late-evening / night, carried on with research and other key tasks that are outstanding.

The treatment itself, or the medical care, varied notably between shift changes, which I found interesting and thought of how critical that difference in the application of the care needed, could make to very critical patients. The worst example was actually Sunday morning when everything was rapidly unfolding in front of 3 different medics of varying levels. The one taking the bloods as the ‘15-minute switch’ was unfolding, came across as simply not knowing what they were doing. They made an absolute hash of trying to take bloods, with me asking them to change arms, then not securing the cannula correctly before drawing bloods, which resulted in the needle beginning to move around, which I had to hold in place, to trying to prevent me from sitting forward when the physical discomfort phase of the ‘switch’ began (I instinctively considered a physical response, but did not), to then appearing to take an unnecessarily long time to complete the necessary vial fulfilments. That all may seem trivial, but at the height of the pain and discomfort, it added to the pain, plus the stress. There were lesser incidents as the week progressed, but the mid-week shift change was notable and I even overheard one team discuss the lack of required details from the previous team and how that was impacting them.  

At 21:30 on Wednesday night, I was informed that I was being moved to an open ward, due to not needing to be isolated any longer. That finally took place around 23:00, which impacted that night’s ‘sleep’, with around 3-hours being the extent of what I managed; not helpful to the overall situation. The new location was a ward with 5 other patients, all in various states of health. Unfortunately, I was placed next to a very demanding one and a person that was relentless in their ‘needs’ from the medical staff; the majority being non-medical! Certainly a contrast to the start of the week, with privacy, noise levels and the assault on other senses, being markedly different!

In summary, a very, very challenging week, with the majority of those challenges being psychological. Since Covid, I have a deep and genuine fear of being admitted into a hospital system that has so many documented issues and one where many people have come out worse than when they went in. That was a thread running all week, so battling with that aspect constantly, not helped by the above mentioned variance in treatment level administration. Up until Tuesday, I was also contemplating what was worsening and what that may mean for my main prognosis. The realisation that no initial discussions or reading of literature, regarding the impact of cancer and subsequent introduction of chemotherapy can prepare you fully for the reality. That reality is very personal and takes on many forms. To say it has been hard to deal with up to now, is an understatement. It has been very different to what I expected and all of the preceding weeks have detailed various aspects of that. The psychological impact has been huge and as hard to deal with, as the physical aspects are; reaching a new crescendo during this week. All of the above impacts have not just been on me, but also on Sandra and I see that impact daily, which saddens me. If you are reading this and are in the same situation, do not underestimate the impact of your disease on those around you constantly. I have highlighted Sandra and the impact on her, aside from the impact on my children and sister Susan, as Sandra’s is relentless. She has zero respite, as she is with me 24-hours a day and can see every little change and impact ‘live’. I am not going through this alone and we have spent time this week discussing the psychological impact on both of us, from what unfolding last Sunday; it is heavy…………….

Following on from last week, where my daughter Alanna shared her thoughts here, this week’s installment comes from my sister Susan and they are:

‘I find it comforting that I get to see Peter and have conversations I wouldn’t have been allowed, if i’d not had the chance to know. I am constantly asking myself what do I want to say. How can I help him and his immediate family. Can anything be done to control it to give him more time; how can I stop this for him! The coming to terms with it is not in your control. The downsides are that you know, so your life has already changed by knowing and the various impacts that will have on everyone he connects with.

But I think if you had a choice, I think the knowing will hopefully outweigh the path ahead and what if we didn’t know. I constantly think about our Mum and wish for one more minute with her, to tell her what I wasn’t able to, given the short timeframe of her illness and the very little time we had with her. As time passes you come to accept that that no time would ever be enough and as you get older you accept the knowledge that she would have known how much she meant to me and how much I meant to her, I guess.

So, I think this gives us the advantage over not knowing. Being able to be on the journey with Peter from reading this Blog, rather than being in a position of being afraid to ask the awkward questions and I thank him for sharing this with us and not shutting us out. It must be a scary place to be and hopefully we can support each other and get some comfort from that. I think Peter must be in panic mode and thoughts racing constantly; what to prioritise / focus on, what is important with the remaining time and alongside that, the feeling that, is this really happening?

I definitely think it realigns all of our focus. Definitely enjoy the enjoyable happy moments and give them more appreciation than before, or a deeper appreciation. Be grateful and pay attention to things more. Focus on the good things that are right and try to change what you consider needs changing in relationships, etc. To be left with less regret about the situation or being comforted with what you are focusing on.’

To round off, Sunday was spent doing nothing, resting and getting ready for the return to the office on Monday morning.

Thanks for the ongoing interest and commentary on each update, very welcomed.