Much like my last entry as this covers another good few months I have split it into sections again to try and cover how I have been feeling, how treatment has been going and how I’ve been trying to get out and do things. So go grab a tipple of your choice and get comfortable because I can see the word document this is on telling me it’s 4 pages long (but good news, it’s not 4 full pages)
General Fatigue
To pick up where I left off from my last post, I spoke to the colorectal nurses about the oncologist suggesting about getting back to work, they pointed out they can’t really advise what is best to do for me because everyone is different. Everyone reacts differently to the treatment I am on and also I have to bear in mind what my body and mind has been through to get to this point. I have to say this put my mind at ease as I just needed someone to confirm that taking things at my own pace is the right way to be.
In previous blog entries I’m not sure I’ve covered the fatigue I feel in the right way, so I thought in this entry I would try and address it first and in maybe a little bit more detail I guess to try and explain it more. First to help me explain the fatigue I’ve been feeling, a friend pointed me to “the spoon theory” a short explanation is that a spoon is equal to a unit of energy that someone has, so people not living with health conditions can often wake up with an unlimited amount of energy, where as in my situation I have a limited number of spoons to use, so I have to plan throughout the day how and when I will use them, I’ve probably not explained it very well, but it’s an interesting theory and worth looking up.
Some examples to explain the fatigue I feel:
Fatigue Enhanced By Heat
This deserves its own little side heading, mainly to cover the hotter weather/heatwaves we had in June and September, I found that it enhanced my fatigue & that I just seem to really feel the heat, maybe more than I used to, but I can’t really remember how the heat used to make me feel, so I can’t really compare how a normal me would feel, but either way I really felt the heat. I just found the weather physically and mentally draining, it made me feel worse than I normally do after treatment, I had two fans on in the bedroom to help me sleep and sat in the lounge the really hot days with a fan on and the curtains drawn. Glad it hasn’t been as stupidly hot this year as it was last year, but in case next year is bad I may invest in an air conditioning unit just to be prepared.
Treatment
First point for this section is feeling sorry for the nurses due to the conditions they have to work in at times, in June during the heatwave the aircon system wasn’t working & it was hot on the ward, with no windows that open to the outside, whilst they had to run around on the ward, they’ve always been short staffed and it’s an added stress I’m sure they could do without. Then in October (the week the summer returned) the heating system was stuck to just pump out heat, so the nurses were working in 29 Celsius. You’d just hope things like this could be sorted out for the nurses as it must be uncomfortable for them, it was warm on both occasions, and I was just sat down.
At the end of July we saw the oncologist registrar for a quick catch-up appointment, not a lot really came out of the appointment, but I mentioned the fact my toes have still been playing up and causing issues, apparently it can be a “legacy” side effect of the panitumumab from last year even though it’s not actively still affecting my skin, because it did affect the skin around the nail my skin is not healing quickly from it.
After my October treatment (which was on the Wednesday) on the Thursday afternoon I felt a tightness in my shoulder just above my PORT, when I woke up on the Friday it was still there, for example it hurt when I lifted my arm to wash my hair in the shower. I called the nurses to explain to them this issue and they ended up seeing me for an ultrasound scan of the PORT and the veins around it and then an x-ray of the site. Thankfully nothing was wrong with the PORT or any of the veins, so they only thing they could think of was maybe the tubing around it had pinched on my collar bone when I had treatment, apparently it can happen if the liquid is slightly cool. Eventually the pain subsided a few days later which was good. I feel a bit silly that I went through all the investigation for it not to be something major, but equally it was sensible to check in case there was something sinister causing the issue like a blocked vein or something.
On October 26th we met with oncology to discuss the results of my scan from September 27th, it was a long 4 weeks to wait, but apparently there had been a delay in the results getting to oncology, can’t do anything about it but it does drag out the anxiety. Anywho the scan showed no change, no decrease in anything but equally no increases or new growths, so that’s good. The plan is to carry on going with treatment and I will see oncology again in 3 months where they will then look to book another scan for me. I also have a new oncologist now as apparently my previous one retired recently (news to us). I did mention the fatigue I feel to the new oncologist but she said it sounds to her like accumulated fatigue from everything that’s gone on.
Monthly Updates Trying To Do More Normal Things
In June we met up with my wife’s family for a private dining meal in Southampton, now to be honest I was dreading it (not for the family, before anyone makes that assumption) but because it was a Saturday meet up, in a city that’s on the coast and in the summer, plus the place we were meeting was next to a theatre which I thought with matinee shows would add to the volume of people in the area. All this said, thankfully it wasn’t as busy as I feared and it was nice to do something and get out, maybe it’s a mantra to keep living by, assume things could be busy and because of that not enjoyable, so then you are pleasantly surprised when it’s not as bad as you thought. On the health side of things, I did feel a lot of fatigue as the day wore on and felt pretty tired the day after, just with a group of people there is so much going on in terms of different conversations and people then including different people in a different conversation to what they were talking about, I feel like I can’t keep up and get a little lost to be honest about what was going on. Also I had a lot of fizzy drinks while out and have now realised I should’ve asked for some water or got things that are still as I felt very bloated and driving home I could feel my gut grumbling around and cramping up a bit, so note to self always stick to less fizz.
August didn’t start off very well as unfortunately we had my wife’s Nana’s funeral which was on the Isle of Wight, we were both anxious about the ferry travel during school holidays but thankfully it was dry enough to be outside on both journeys, it was another tiring day as we did all in a day trip sharing the driving. I am pleased that we went for my wife to be able to say goodbye to her Nana, I just think the idea of travelling to the Isle of Wight was the anxiety inducing thought as it’s not something you can just do in your own car, you must use public transport to get there via ferry.
In September we went to Wales for 5 days for our first holiday since 2019. It felt great to be away from home for a bit and feel normal. The first day we were there as previously mentioned was a rain made rest day, but to be honest that probably did me good, so we sat inside and read our books. For the rest of the trip, we managed to go on a steam train journey and have a couple of walks around different places, not doing too much to feel exhausted, but a solid walk. We also had dinner out at the park we were staying in as they had outside seating on a balcony where we could sit.
Planning
May seem like a strange subject matter and to be honest I agree, but it is to do with planning to be able to go out and do things as mentioned in the section above. But I guess I want to explain what my wife and I do to plan how to get out and see people. As it feels like we can’t just get up and do something having previously been told it best to do things avoiding large numbers of people. So here come the examples again 
