This week started with the first May Bank Holiday and a welcome rest after the challenging trip to Belgium. It also gave me a chance to catch up with the grandkids, who missed out on our usual Saturday routine visit. It was a short visit, of a couple of hours, but enough to enjoy lunch have some time to play.

Tuesday onwards began a descent into what became the second worst week since the treatment began. It is impossible to determine how much of what unfolded, was exacerbated by my decision to take the trip to Belgium last weekend and how much would have taken place anyway?

Overall, it felt like another ‘cold’, with aching body (some of which will have been the impact of my trip, especially my leg muscles), sniffly nose, but more difficult to deal with, very chesty, making it harder to breath normally and the need to have to clear my chest / throat; a sore left side of my throat added to the mix, making for a worsening impact each day. Managing to get to work, I had little energy left in the evening to do anything else.

An additional impact that presented itself from Thursday onwards, around 19:30 / 20:00 each evening was a ‘flick of a switch’, where my temperature began to drop notably. I corrected that by wrapping myself up and trying to build my temperature back up, bit by bit. That worked gradually, but then tipped the other way. The results of that development led to a bad night’s sleep on Thursday night, with me still wide awake 3-hours after getting into bed, with broken sleep after that, until I got up for work. Friday night seen me sleeping in my ‘cocoon’, on the sofa, from around 20:30, through to around 00:40, when we moved to the bedroom. Sandra sat guard the whole time next to me.

By Saturday night, Sandra took my temperature and it was 39.4, which is almost 2 degrees above the top ‘limit’ they allow when under this treatment. Multiple subsequent checks seen the temperature above 39 degrees. That resulted in a debate as to whether to phone the helpline and seek advice. My daughter got involved, as we were taking part in a family quiz online, with her being able to see that I was struggling overall, plus we informed her of the ‘temperature situation’. I took the personal decision to not phone the helpline, much to the annoyance of Sandra and Alanna; something I did not do to add to their stress or worries, but mainly to see if I could self-regulate, but also avoid a potentially tiring night in a treatment suite. We went to bed soon after the quiz ended and I fell asleep instantly. Sandra intermittently checked on me and whether I was still breathing, throughout the night. Not a great night 24-hours for either of us, but viewing it from different perspectives. I am very conscious that this disease is not only directly impacting my health, but also directly impacting my family, most notably, Sandra. She sees and hears everything, all day long and is in a constant state of worry and observation. For the rest of you suffering this disease, two key pieces of advice:

1. I made the decision I did last night, of my own volition. I would advise you to be cautious and watch your symptoms, seeking medical advice when you feel necessary. I know this sounds contradictory, however, you will have read that I have sought advice in the early stages, which have helped me understand more and learn how my body is reacting.

2. Do not under estimate the impact of your illness on your loved ones / those close to you. It is visual and palpable. Be aware of it and try your best to lessen the impact. We are not the only people enduring the impact of this dreadful disease.

To round off the medical aspects, which dominated the entire week, I woke up on Sunday morning with a clear difference. ‘Switch-flicking’ in reverse. My body was not as sore, my chest was not as heavy and my temperature was normal. May not sound a lot, but after 5 intense days of pain, a nice change! The body pain remained constant throughout the week and made for a challenging physical and mental time. I also noticed that my emotions were see-sawing a lot during this week, very notable and frequent. Various triggers, but wide ranging in nature, moving from Sandra, Alanna and Karl, former work colleagues, watching the impact on Sandra, my grandson’s simple, but highly effective words to me on Saturday; the side effects are more than physical, or so I am learning! Very bizarre to be bombarded in this manner, then to have a return to some normality, just as quick. Making plans is not something we do much anymore, due to this weird situation.

One side impact of feeling how I did, physically, this week, was the need to cancel a planned meet up with a former boss of mine, but someone who became a good and trusted friend. I was very annoyed at having to do that, but unfortunately, would have been in no fit state to have a decent catch up conversation, nor enjoy the food we were planning on having; a reschedule is underway, which hopefully will take place. Another aspect of dealing with this disease, where the side effects eat into your plans.

The last of the side effects to mention for this session, was the notable loss of appetite and less desire to eat anything. It started at the end of the previous week, with almost everything feeling like it had the consistency of cardboard and pretty much tasting the same. We have already adjusted to trying more spicy foods or foods with stronger flavours, but that had little positive impact. The loss of weight is a known side effect of the medication, so will be interesting to see what my next weight check (next week), shows.

Saturday was the coronation and discussions during the week with my kids, lead to a planned ‘extra-special’ Saturday lunch, to make the day memorable and celebrate such an awesome event. Alanna ensured that the grandkids had appropriate fancy dress outfits together with crown making kits for all of us. We got various party type food and overall, got all of the components in place to make it as memorable as we could. On the day, Alanna, Dan and the grandkids were there as normal, but we were also joined by Karl and his two step-children, making for a nice feel to the day. Sandra and I dressed in red, white and blue, we made our superb crowns, covered in lots of bling, had a very nice party lunch and then I fitted in some all-important play time with Jameson, before then having to rest up. A very pleasant and memorable day, in the midst of a challenging week, made possible by Sandra and her superb efforts and work to pull it all together. A strong partner is needed, as we chart our way through this nonsense, and I am pleased to say that I have an absolute rock in Sandra, something I am exceptionally grateful for.

I proceeded to sort some items in the garage, firing up my Vespa and ensuring the car fluids were checked, all against the backdrop of a stunning sunny day. By the afternoon, I felt ‘up for’ cutting the grass in our garden and next door’s (have been doing that since our neighbour died of cancer some years back). Guess I will find out whether this choice of physical activities will have any knock-on effects.

I will sign off now and end this lengthy update. I will thank many of you for your continued heartfelt comments, they are welcomed, emotive and humbling. Many of you are also commenting on the honesty and personal nature of what I am writing, again - thank you. This is deliberate and I am pleased that is is landing as intended. If my words make it easier for others dealing with this, then I am happy to remain open and honest as a carry on through this.

Thanks for your time and comments. Update in 1 week’s time.