In this blog entry I have broken things down a little bit, at the top I have a month by month breakdown of things, then at the end little sub headings “fatigue” and “random rant”. So as always, grab a tea (or a pillow if you read this to help you sleep) and read away 
March started off with not a lot happening to be honest, for my treatment however I was told that my phosphate reading in my bloods was slightly low (0.72 when normal range is 0.8 to 1.5) however it was not a major concern to be prescribed supplements so I investigated how I could increase my levels by eating certain foods. As I struggle with too much dairy, fruit and vegetables, I went for eating more chicken and fish, so I feel sorry for my wife having to smell salmon in the house for some time after I have cooked it, that said I discovered sea bass didn’t smell as much so that’s good news.
For the Easter weekend, we had meals out in heated huts on Good Friday and Easter Saturday, then Easter Sunday I did some gardening, although I relaxed on the Monday I really struggled on the Tuesday with fatigue, my eyes felt heavy the whole day and I couldn’t concentrate on anything so had to call my attempt at work short. On the Wednesday I felt fine again so I can only assume that the weekend caught up with me and just tired me out from having done a lot more in a few days than I would normally do (admittedly I wouldn’t have normally done the gardening after two days of socialising, but it was the first time we’d had consecutive dry weather days so I had to attack it before it rained again).
April, treatment wise my phosphate levels were back into the normal range, so it looks like all that chicken and fish worked, bad news then for my wife that I’ll be continuing to cook fish. Also for this treatment when I arrived I discovered that the ward was no longer running a mandatory mask wearing policy (not that some older patients have been following this rule for a few months anyway). I’m not sure how I feel about this as in theory the nurses on the ward and fellow patients should not be attending if they are ill, but I just think the covid pandemic has highlighted how easy things can pass between people and I do wonder why in medical facilities mask wearing isn’t more common because there are sick people traditionally in medical places, therefore it would make sense to still wear masks to protect yourself and others. Equally I understand that people want to go back to how things were, I just don’t know if there should be a happy medium.
May, not a lot happened treatment wise other than my phosphate reading was 0.01 lower than the normal range (found this out in an oncology appointment) and in the same appointment I was advised that they would book me a scan for June.
I guess the main thing from May was I noticed I had an issue with my left Achilles and sole of my foot, as I was in a lot of discomfort as I couldn’t put my foot down fully I went to the doctors they said I had Plantar Fasciitis. A silly funny note when I read up about this, it said it mainly affects people between the ages of 40 and 60, being in my mid 30’s I found it funny that my body is being old before it’s time medically, based on the fact in the doctors their information screen always says you should get checked for bowel cancer in your 40’s/50’s as its more common to get it from that point….maybe I’m actually in my 40’s and not my 30’s On a serious point if anyone should ever read this and have Plantar Fasciitis, aside from using ice and stretching as recommended I found some good socks on Amazon that I wear to help me when I walk and am at home if I feel any discomfort, they have really worked for me to keep me moving.
June rolled along and I had my scan on the 15th just a couple of days after the June treatment, then had to wait until July 4th for the results. I understand there is nothing I can do about the wait for results but I do find it a quite anxious time pondering what could possibly happen, it’s the same every time for me and I assume the same for a lot of people waiting on results. As it was the scan showed that everything is stable, so no shrinkage but most importantly nothing new has developed. So the plan is to stick on the immunotherapy for now and the oncologist will see me in 3 months time to look when to book the next scan. Obviously I would have loved further reductions (well if we are wishing for things I'd not like to have cancer, it's becoming a pain I tell you) but I am happy that things are stable.
Fatigue
A general fatigue bit, I thought I would type about how variable it is, in the same week in April I managed to do 4 hours work one morning (I can usually do 3 hours before tiredness hits me) so I was feeling really good and it felt like a step forward. However a couple of days later I re-potted 3 indoor plants in the morning, they weren’t big plants/pots to move around and it only took me half hour or so, but I was finished for the day afterwards, in theory I don’t think that task should’ve finished me off, but it did.
I also think what type of work I do also varies how tired I am, at the start of June I did a lot more “live” work in terms of answering emails and processing orders compared to what I normally do, after the 3 hours of work I had to go and rest my eyes for half hour as I just felt wiped out and the remainder of the day I just rested on the sofa. In one way I felt good that I had been useful and been able to help out and get things done, but on the other hand I felt frustrated that 3 hours of that had finished me off, that is/was my job and I could do that on a daily basis without any issue before all of this, guess it just showed how far away I am from normal.
Sticking on the eyes thing as it has happened a few times, I figured I should explain it more in case anyone else experiences this that reads the blog, again it varies when it happens but my eyes just feel very heavy, not so much that I want to go to sleep but so much that I have to sit and rest them for a bit but then for the rest of the day I find it difficult to focus on things, whether than be watching something on tv, reading, building Lego or even having a conversation I notice my attention disappear and wonder away and then I’ll return to what I’m doing but not really know what was happening since I switched off. The only way it goes away really is once I have slept, I suppose you could argue that I should go have a lie down however I don’t want to then not sleep at night so I prefer to take it easy in the hope I’ll then sleep well overnight.
Random Rant
My random rant to end this entry is that someone was talking to us about having a medical procedure and how beforehand they were being cautious and living like me and my wife, however they then reeled off that they planned to go out for dinner with friends on a Friday night, the following night have a takeaway with a friend they knew was just getting over a cold and then the next day go on a day trip up north with the same person, all in the week before their operation. I found this hilarious to listen to being described as being like us as it’s so far from being like us, we are trying to do more and be as normal as we can but we plan things heavily, we don’t see people if they are ill/getting over an illness & we certainly wouldn’t sit in a place for dinner on a Friday night unless we were in a private area. I felt it trivialised our lives and also showed a significant level of not understanding anything we are going through, I do feel massively guilty that my wife has to go through this with me when we are in our 30’s & the fact that some people just don’t seem to understand at times.
