Overall, the situation remains much as it has been of late. Varying side effects and working around those, plus the ongoing ‘battle’ with finding the ‘Goldielocks’ mattress (we’re not there yet!). As mentioned in previous weeks, the impact of trying to sleep on an uncomfortable / unsuitable mattress, takes on a bigger focus compared to my pre-cancer days.
The main focus for the past week has been a psychological one. Sandra continues to monitor my every move and ache & pain, worrying about what each change means in the grand scheme of the disease and the prognosis. That led to us having an in depth conversation, one around the post-chemo phase.
This phase that I am currently in is very much an unknown one and a case of ‘what does today look like’. At the outset, we struggled to find basic information, or information that was helpful - part of what drove the creation of this Blog. Having gone through the chemo sessions and learned what they brought, increased our knowledge and what we could expect. Now that we are on the other side of that, it is once again like a ‘knowledge wilderness’. What does post-chemo look like/ What should we expect? How should I be feeling? If how I am feeling ‘normal’ for this stage? These are just some of the questions rolling around my head, as I go through each day and I focus on the positives of doing what I can and not getting focused on what cannot be done, or not feeling energetic enough to do things. One gauge is the interactions with the nurses, as they take the regular blood tests and have the short conversations with you, about how you are feeling. So far, none of what I told them has raised any concerns and I am met with a ‘yes’ kind of answer, which appears to indicate that the side effects are normal and this is what they would expect at this stage. We are not necessarily ‘living in limbo’, but it could be considered a form of that.
The main impact is the decrease in abilities around day to day things. The day job is not usually overly physical, but it was for the final 2 days of last week and the impact was telling. That was both for tiredness levels, but also knock on pain levels - feet sensitivity and lower back pain. That back pain in one of the main inhibitors for most things now.
When my children were young, I would spend time with them on the floor playing with their toys with them and engaging with them for many hours (depending on the day of the week). Something that I enjoyed and done the same with their cousins, some of whom would be with us frequently. Now that there are grand children, I carried on that approach and something I have always found very emotionally rewarding. Playing with toys can be fun, but educational and a key developmental tool also; what I have aimed to do whilst ‘playing toys’. Injecting imagination along the way and utilising the surroundings of the sofa, cushions, a table, to help build out imaginary worlds, as part of whatever toys are ‘fashionable’ at key times. That has now gone by the wayside as my ability to lie on my side on the floor and play, has gone, as the pain during and after is too much. I have adapted and more recently, utilising the kitchen table to lay out the toys, has allowed me to continue this key activity for myself and the kids. A notable, nut necessary adjustment.
The current situation and ‘adjustments’ also carried on into another aspect last week. We had planned a catch up with 2 former work colleagues / friends, with a nice lunchtime meal planned at a restaurant. A couple of days before that, they developed colds, which normally would not bother me. However, after the illness caught whilst in York and subsequent impact of that on my weakened immune system, led all 4 of us to a sensible decision to postpone the catch up. This is part of this phase too, having to think about simple things much, much more and adjust in sensible ways. Psychologically unenjoyable, but practical and necessary.
At the end of the week, I had an unexpected lengthy phone call with Davey, my second oldest friend (as mentioned previously). A great verbal catch up and one that including us making tentative plans for early 2024, health permitting. A nice way to end the week and great to catch up on ‘life’ with people, especially when the connection spans so many decades.
Thanks for your continued interest and support, as well as the additional new sign ups to the Blog updates. You have my heartfelt appreciation.