I have been away from the Online Community for a little while (albeit checking in from time to time). I think it is a natural result as day-to-day life becomes a little busier than when we were dealing with the grind of treatment or the immediate aftermath and recovery. I have seen some upsetting stories in recent days and my thoughts inevitably turn to those who I am in contact with on here and whose narrative I have seen as they fight a recurrence of the illness.
So, as an update, where am I and how have side-effects changed or developed?
On a physical level I am regularly training in the gym and using my Concept 2 indoor rower regularly. Setting personal challenges and goals is a big thing for me now. A couple of weeks ago I rowed a half-marathon on the C2...that was pretty hard work. The dry mouth became a real issue and I needed to take a few drinks during the 1hr 45 mins row! One thing I have started to question though is the amount that I need to drink. I am starting to wonder if the water is essentially washing away what little saliva the left side of my mouth is producing. The parotid gland on the left is pretty much shot to pieces from the radiotherapy, so not much comes from there!
Itchy tingling in the back of my head and up the side of my face is still an issue form time to time. Likewise, the cramping and spasms in my jaw muscles on left side are somewhat annoying and unpredictable...but it is a small price to pay.
Finally, my natural hairline changed to a rather natural line further up the neck, so I need fewer trips to the barber! I also have virtually no bear growth below the jawline, so the radiotherapy really has been a rather effective form of laser hair removal!
As to food, well, I am largely moving way from meat - which is no bad thing anyway. It is too fibrous and dry. Yes, on occasions I will have some, but it is an adjustment which is not that difficult to make. I still suffer from indigestion which I put down to the saliva issue, but largely things are fine.
Red wine remains largely off-limits as it still hurts the tongue and frankly that makes it a bit of a waste of money! By contrast, beer is fine. However, I will generally only have maybe one or two in a week. Otherwise it contributes towards a dry mouth situation.
Redeveloping and defining effective muscle-mass is my focus and I have regained about 8kg since I finished treatment. Stamina is an area I am still unsure about. I whizzed up Snowdon with my 19 year old son a couple of months ago in under 2 hours, but it was tough. Who knows if the subsequent fatigue was in any way referable to the ongoing or delayed impact of chemo etc. Some people attribute issues to chemo or as late post-treatment side-effects. I have no idea...maybe I am just getting old and it is a natural result!
Whatever the situation, I am embarking on a 50km trek on 28 September (to be completed on that day) as part of the Ultra Challenge series. This is for another cancer charity, to help to fund the fight against childhood cancer. I'd had 49 years of life before my cancer struck. There are little ones and their families dealing with the unimaginable suffering and confusion that cancer causes, before they have even had a chance of life.
A cup of moringa tea and a scone for a mid afternoon snack now before I watch a bit more of England's bizarre Ashes effort.
Crack on!
John. x
