Throughout all of this, from my first diagnosis to the latest news, I’ve just felt like “I will just deal with it as there’s nothing much else I can do”. To me this feels like a totally normal reaction but other people don’t see it in that same way – I guess because my “nothing much else I can do” is for me at least “Can only be positive, can only continue as normal and try to make the best of it” and I know not everyone is like that.
I think because of this I’ve found it quite difficult in a way reading some of the utterly wonderful comments people have made. It’s like I don’t feel I’ve done anything special or different to how I would handle any situation so don’t deserve what’s being said.
If there’s one thing I did want to come from this blog it was for people to take the positive and it’s really quite overwhelming to see people feel inspired by it. It’s also wonderful to see people take inspiration and comfort from each other’s comments.
It’s been a difficult and confusing week really. Actually, confusion is probably the one constant thing in the back of my brain. It’s been hard to just think about things completely clearly without this element of what the heck in the mix. I got through the difficult and pretty repetitive task of telling close friends and family what the situation was and obviously launching this blog which told everyone else I needed to. First couple of days was the expected flood of messages and my wife and I both found it all a bit overwhelming processing through them.
Almost everyone I think has had the same reaction to the news, feeling incredible sorry, asking if there’s anything they can do to support us but ultimately not really knowing what else to say. My reaction has been much the same to all – we really appreciate the support and if there was anything we could think of we would absolutely ask. But you know there isn’t anything to say about it. It is what it is – hugely unfair for everyone… especially unfair for my wife and for my family. The way I see it is, I’ve only got a short time of having to deal with it before I’m gone, everyone else has to deal with the after.
Probably the first question people we’ve seen have asked is “So what are your plans in terms of what you want to do with your time?” It’s a slightly crazy thing to think about, your things to do before you die list and it’s pretty difficult, for me at least, to think clearly about it. There are absolutely projects I want done, there are of course places I would like to visit but they all feel secondary to just wanting to spend time feeling happy in whatever situation and wherever we are, be it at home lying on the sofa or jetting off somewhere.
Next month is our wedding anniversary so we’re planning a trip to Edinburgh for a long weekend. Both only flown through and never visited and given my mobility issues it seems like a good choice in that we can stay right in the centre and hopefully take lots of photos! Ideally it would be New York or somewhere else abroad but I just don’t feel comfortable at the moment being so far away in case of health problems, especially given I won’t be able to get insurance. That’s one of the things with the “list”, where we go is limited by my mobility and health which has been a little difficult to accept at times. It’s like, okay I have a certain amount of time left and instead of being able to relatively freely go wherever I want I can’t and have to be practical about my situation.
I think overall though we’ve got a good idea of what we want to do with our time at this stage. I’ve not yet felt the probably inevitable panic about how little time I have and I didn’t get to do this thing or finish this thing. It seems like it makes more sense to just take things sensibly and get things on our list booked in as best possible, without attempting to cram it all into the next 2 weeks.
Part of me wishes I had some kind of end date in which to be able to plan against but I guess that takes some of the “fun” out of this… it also would take some of the hope as to how long I actually have.