I spent this week feeling sorry for myself for various reasons, some I think largely trivial and some far more serious it turns out. I picked up a nasty cough/chest infection a couple of weeks back that’s only just about starting to go now and have at various times dealt with flashes of anger at being what I would consider trivially ill when terminally ill. As much as I’ve tried to not let it impact anything I had planned the whole thing massively impacted my ability to sleep and concentrate. Of course being a typical male I should have gone to see my GP much earlier and no doubt lengthened it all unnecessarily until my wife sorted out an appointment.
After a busy weekend seeing some friends I woke up on Sunday with slightly blurred vision. I put it down at the time to a combination of tiredness/lack of sleep, feeling blocked in my sinuses from the infection and knowing one of the side effects from the bone drug was flu like symptoms for a few days. I had to cancel on seeing some other friends that evening (flash of anger at trivial vs terminal) but had planned out a relatively quiet week of sorting out admin and organising some of the more practical parts of a being terminally ill. I had hoped I was giving myself a bit more time to recover from all my various “trivial” illnesses at least.
Come Monday/Tuesday my vision in my right eye continued to worsen to the point that it became difficult to open my right eye and I noticed when I did it had started to point off to the right and was no longer able to join up with my left eye to focus at one point. Wednesday morning seeing no improvement we called the GP/Marsden and after some back and forth I ended up with a brain MRI scan in the afternoon with a follow up at the Marsden on Friday. This would be my 5th MRI scan I think and they never get any more enjoyable (particularly if you’re prone to claustrophobia) but I find concentrating very hard on being anywhere else more comfortable with my wife gets me through them.
The Marsden called Thursday morning to say they wanted me to see an ear, nose and throat specialist as they could see from the MRI inflammation around the sinuses that might be causing the issue with the eye. In addition they could also see an anomaly in the skull that could be related to the sinus infection or the cancer and wanted the ENT doctor to check the sinus problem first. We ended up seeing a doctor at St George’s in Tooting who after an uncomfortable exam with a nose camera concluded two things. Firstly, I have a deviated septum that means my nose is essentially crooked underneath. The net result is it takes much longer for my sinus on my right side to drain and goes some way to explaining why I always seemed to suffer worse/longer during colds. Wow does that sound like a “man-flu” style excuse… but at least I have a medical reason for why it takes me longer to recover from colds!
The second conclusion was a little harder to swallow at the time – while he could see some inflammation in my sinuses it wasn’t causing the issue with the eye. That of course meant it was the previously mentioned anomaly that was causing the issue and therefore cancer related. Probably silly at this point to think that a simpler less serious thing might be causing a new health issue for me but I had hoped that it might at least be related. My wife reliably informs me I retreated into myself a fair bit after this once we got home. I think I’ve tried hard to prepare myself at least a little bit for the various things that may or may not happen to me during my deterioration. Losing sight, partially or otherwise is most definitely not something I was preparing for…at least not at this stage. It was hard enough just during the week dealing with it so the idea that a) it was cancer related and b) therefore might not be reversible hit the “be scared” part of my brain hard.
I managed through the evening by concentrating hard on other things and reminding myself I shouldn’t make any conclusions out of the situation until we spoke with the Marsden team. This morning we saw the doctor who explained that I have a small amount of plaque on the base of my skull near my eye which was pressing down on a particular nerve that controls certain motion in my right eye. In my case it’s the ability to go to the left as well as the ability to open and close my eyelid (I can do it but it’s difficult and doesn’t want to stay open for long). The treatment for it is 5 sessions of Radiotherapy and I had the first session this afternoon.
The doctor felt confident, in as much as any they can ever say, that it would reduce the plaque and release the pressure on the nerve. Unfortunately I am faced with two possibilities, one is that once the pressure is released the nerve returns to normal and I can see out of both eyes as normal. The other possibility is the nerve has been damaged by the pressure and my right eye may or may not return to normal. To be honest I have a reasonable amount of confidence it will return to normal, we’ve hit it pretty quickly with Radiotherapy and I think I need to have belief that last Saturday was not the last time I saw something in focus with two eyes.
Timing wise, we’re lucky in that I can just about have treatment done before our anniversary trip next Friday. I am of course thoroughly hoping I can enjoy Edinburgh with two eyes, I’ve learnt this week that crutches and a lack of depth perception aren’t a huge amount of fun. Being only able to use one eye also seems to make focusing on anything remotely long distance impossible, as well as adding this completely disconnected/tired feeling to everything.
The positive is we have a plan for treatment and we can only have confidence it will work as it’s supposed to…. Until then…. “Avast”???