This week began with high hopes for my birthday week, enhanced by the fact that my older sister had arrived on the Sunday evening; so all components in place. The week itself, however, did not unfold as planned / expected.

Following on from last week and the decision to delay my planned chemo session No. 4, that meant that my normal 21-day cycle of hormone and steroid tablets were not being taken, as I had run out. One potential side effect of that was a notable decrease in my energy levels. During the early part of the week, I was doing normal tasks and felt normal, less than 15 minutes later, I felt exhausted and fell asleep for 2.5 hours. It was another ‘switch-flicking’ episode that came on quick, with little pre-warning, but with a very notable impact, which was very unnerving.

The next notable side effect, which got gradually worse as the week went on, was a dull pain in my right arm. I initially ‘connected’ this with the bloods being taken the previous Thursday, with the pain becoming apparent over last weekend. By mid-week of this week, the pain was spreading and by the Friday, it was along the whole length of my arm and had spread to my whole shoulder blade too. The wrist, elbow, shoulder and shoulder blade was where the pain was concentrated. The forearm, around the wrist area, was also painful, but also affecting my ability to grip, intermittently.

Later in the week, I had my bloods taken again, ahead of the planned chemo next Tuesday. I had a quick catch up with one of the nurses and asked her whether the impact was due to coming off the meds. She either did not hear me, or did not understand the question, so I am none the wiser on that one!

The blood test at the end of the week also flagged up further weight loss, which is now running at around half a stone in just over 1 month; great, if I was on a planned diet, but not good in this situation. My appetite is almost non-existent and although I am trying to eat, I am struggling with many main meals, which is where most of the calories usually come from. A rethink is currently underway, so that I can hopefully start to gradually increase the weight again. The lack of calories may also be impacting the energy levels, but again, not something I got a clear answer to!

Moving to Sunday, the day developed quickly and not in a good way. The above mentioned arm pain, now spread to my left arm, just not as intense. Again, I ‘connected’ this to the blood taken two days earlier, as i swop arms for any blood extraction, to let one arm recover. I contacted the chemo helpline, to get the two questions I raised on Friday, actually answered. They confirmed that the tiredness is part of not being on the steroids, therefore, something to look for when I eventually complete the full chemo treatment plan. I then informed the person of the arm pain. She advised me to go to A&E, as there is a risk of a blood clot. We did that, and spent 6+ hours seeing various people and having bloods extracted by different departments, going through verbal and physical tests to determine whether I was in fact suffering from a blood clot. They could not confirm 100% that I was, but they did put me on blood thinning tablets. On the way to the hospital, I began to have an increase in the discomfort levels, plus a rise in temperature, which lasted for around 90-minutes and was very tiring, alongside the blood extraction, discussions and the waiting around. By the time we got home, both Sandra and I were exhausted. The unknown for the coming week is, will that mean I cannot have the planned chemo on Tuesday? I am also awaiting a CT scan confirmation, so they can determine if a blood clot is at work, somewhere in my upper body.

That is a new side effect that I was not aware of and, as you may imagine, a very unnerving potential. To know that it has been building for more than 1 week, alongside raising it on Friday with a nurse within the specialist chemo unit and have her basically ignore it and what it may have meant, is also very concerning. My psychological state is currently in turmoil, as I continue to monitor the arm pain levels, await the scan and see what is causing that particular side effect, alongside awaiting a phone call to confirm whether I will be preceding with the chemo.

Having my sister with us was great and a good chance for both of us to catch up face to face, plus assess our current health impacts. They were unfortunately notable for both of us, resulting in us not venturing anywhere, even on my actual birthday - mainly driven by the lack of desire to eat anything. Although we did sort some take-away food in the evening, I ate very little of it.

The following evening had a planned catch up with Emma and Kim Sm., two close former work colleagues, but that had to be postponed, again as a result of the low energy / lack of desire to eat.

Overall, a week of not doing a lot, not eating a lot and feeling very lethargic every day. Not the birthday week I had in mind, but one that was out of my control, having to adjust to the ongoing physical (and mental) impact of the treatment plan. However, when I think back to December and the pre-prognosis phase, it was another key date milestone that I did not know If I would reach. Happy to have got to this stage, but hoping the next one may be more normal; we’ll see.

The week ended with a mix of charging the batteries / catching up on sleep (my sister returned home early Saturday morning), alongside selling off the first of my private hobby collection to a good friend. Another impact and reality of knowing I have a terminal illness and beginning to work on thinning out the collection whilst I can / not leaving Sandra with a burden she does not need. The impactful Sunday was draining and the awareness of having four solid weeks of intense side effects, without respite, is taking its toll.

Thanks for the ongoing interest and taking the time to read my experiences; appreciated.

Regards

Peter