The last week and a half I’d say has been split into dealing with 3 quite different things. The first feels silly and vain to say in a way, but it’s all about my appearance. Going bald from treatment didn’t really bother me that much. Losing my beard did but I’ve had some form of facial hair the last decade so it’s very much a part of my identity. I’ve suffered from acne quite badly since I was 15 and while it calmed down in the last few years the damage has been done with scarring. The beard was always partially an attempt to hide that scarring so it has been difficult to ignore it at times.
The biggest thing for me at the moment though is the massive puffiness and “fat face” that has come as a result of the high dose steroids. I know it will reduce to normal once I’m off them but that’s still a while away.
It’s the shock I think when I glance at myself in a mirror and just don’t recognise my face or even my facial expressions. I try and remind myself that given the circumstances how I look is really the smallest and most irrelevant thing but then your identity is important no matter what and I want to look like me when I go.
What I really wanted to get out of the way was the “admin” side to all of this so the week was spent going to my radiotherapy sessions and burying my head in spreadsheets. At the forefront of my mind is to just make sure that everything is as easy as possible for Tamsin when the time comes. You have the obvious bits like transferring and managing the living/flat bills and then you have the personal bits like what to do with my stuff.
As per most 28 year olds I hadn’t given any thought to writing a will. Obviously the main part is listing out where you want your things to go but I found it the most surreal experience to think “okay, x should have that because they’ll make the best use out of it” and know that this will actually happen soon and not some 30 years down the line. I’m certainly a thing person, I really love gadgets and yet I’m sitting there essentially dishing them out because they are just things and if I or my wife can’t/won’t make use of them other people should. What was odd as well is that I love doing all those little organisation things and building spreadsheets so I took an almost perverse pleasure in planning out what to do and what needs to happen when I die. There’s still plenty more to sort out but once it’s done it’s one less thing to worry about and we can just concentrate on enjoying the time left.
Having been at home and only really popping out for short familiar trips in the week, our Edinburgh weekend has been a big test of my mobility and my general strength which is, as expected, continuing to deteriorate. It’s funny the things that are so different and end up frustrating… packing for instance, crutches of course making it impossible to carry much so the whole process of getting my stuff together taking 3 times as long. The journey up to Edinburgh was manageable but a lack of depth perception or ability to focus properly meant I had to concentrate quite hard all the time on exactly where I was walking and taking it all very slowly. It was the same again with unpacking, taking so much longer then normal and finding myself really frustrated by that. I’ve always been a tidy and neat person who gets somewhere and unpacks fully straight away and it’s always been just a plain simple easy process and now it isn’t.
On Saturday we headed up to see Edinburgh castle and the staff arranged for mobility transport to get us to the very top. Initially in my head I had this stab of “oh no..we’ll be fine without” but I quickly reminded myself it’s my gut reaction still to feel like I’m not “worthy” of special treatment or help when clearly a one eyed terminally ill man on crutches with weak legs is probably going to appreciate some help.
We managed a bit of walking about at the top of the castle but I just felt utterly exhausted and realised we had to take things even slower then expected and that my levels of energy just aren’t anything like they used to be. It’s really hard having expectations of what you can manage knocked down so much but it was necessary for me to see exactly what my limitations are now and try to adjust to it.
The same goes for taking photos of which I’m now limited to leaning or sitting positions in which to take from. Fortunately the eye that remains open is the one I use to focus but it’s been pretty hard to accept these sorts of limitations. I did manage to take a few photos of our trip but nothing like what I would normally do – I know that ultimately it’s about accepting things have changed and recognising I can still take photos regardless and enjoy them but mentally it’s hard work to let go of being able to just walk wherever, crouch down and take a photo.
The good thing about going through all that on the castle trip was that it allowed us to judge better what we wanted to do with the rest of weekend, in terms of knowing my limitations. So it was spent relaxing, enjoying some F1 from our hotel room and eating out at some quite amazing restaurants. We managed to get to the zoo on Monday and see the much talked about Pandas, as well having our first foray into Taz pushing me around in a wheelchair. The zoo is, it turns out, just one big hill and you start from the bottom so it was unlikely I would have even made it as far as the Panda pens on my crutches. In the end, the experience made me think I just need to stop resisting obvious areas of help – the occupational health nurses at the Marsden measured me up for a wheelchair a while ago and all I need to do is ask for it which I now plan on doing. We may as well have it in the back of the car… ultimately it’s going to help us do more.
I had of course hoped that my eye might have improved for the weekend but there wasn’t really much of a difference. I’m trying to exercise opening it and I think perhaps today there is a slight improvement in my ability to keep it open but it’s difficult to tell and easy to lull yourself into a sense that there’s improvement when there isn’t. We only finished the radiotherapy on Friday so all I can do is continue to exercise it and keep my fingers crossed the nerve sorts itself out. I feel like I’m coping with it but that is still dependent on belief it’s a temporary problem, if it switches to a permanent problem I suspect I’m not going to cope so well with it.
Regardless of some of the difficulties, we had an absolutely wonderful anniversary weekend. I couldn’t be luckier to have met and married my wife, who continues to amaze me with her strength (literally, pushing me up a big hill) and resolve. It’s horribly gutting to think this will (possibly) be our only anniversary but we’ve had a truly extraordinary first year together not only dealing with this but also still managing to be a happily married couple.