…and the first thing I think that entered my mind once carefully installed was a vivid memory of using my Nana’s shower seat when I was 8 years old or so and finding it all quite novel. This was swiftly followed by an acknowledgement that it was a bit ridiculous to be in a situation that meant I needed a shower seat but I can confirm after using that the sense of it being “novel” still exists at least.
I realised as well that I have managed to map out quite carefully all the various points I can hold on to throughout my bathrooms. It’s surprising how difficult it can be with crutches and the leg weakness with any other bathroom – you end up actually spending a few seconds working out how you’re going to navigate about and “get up” later. It reminds me a bit of some of the hardest moments with fatigue during chemo where I would spend half an hour psyching myself up to actually go to the bathroom knowing how much energy it would require and how difficult it would be. It isn’t nice to have that reminder but at the same time I also know that I coped with that so can cope with this.
After getting back from Edinburgh the week has been I guess “routine” in so much as it is for us. The trip certainly helped take my mind off the situation a little though there is no escaping the physical difficulties. Getting up in the morning is more difficult, just in terms of aches and pains and the eye is still the same (with maybe some improvement the last few days). I do feel like I have to manage my movement quite carefully now, knowing my energy levels are pretty low. I also found myself feeling a little less stable in the week emotionally thinking about my situation and I had the first proper pang of panic about how long I may have left.
I don’t know any more than I did before but for whatever reason it hit me. I had a CT scan on Wednesday which is a general let’s see how things are going scan but won’t be discussing the results with the doctors until the end of the month. On the positive, I haven’t had a call yet to tell me anything is drastically wrong and historically they’ve called me soon after most of my CT scans with bad news. I know I can only expect more of these panics really but I reassured myself that firstly, there isn’t anything on our must do list I could ever say to myself must be done before I die. Do I wish I’d been able to take my wife to New York? Yes, absolutely… it is something that important? No, not really – the company is all that matters and I get that wherever I am. Sounds obvious but I think everyone’s “bucket list” would end up very different in this situation versus one when they have a long lifetime in which to achieve it.
On Sunday we drove down to see some of our close friends and experienced a funny role reversal. Before all of this, whenever we did slightly longer drives I’ve always picked up a bag of Haribo which my wife very kindly feeds to me during the journey. Apart from my sweet tooth, it stems from memories of long drives with my parents enjoying boiled travel sweets I think.
Between my eye and the legs I’m not driving so instead enjoyed my Haribo from the passenger seat feeding my wife (I should point out that I’m the sweet man while Taz enjoys the occasional Starmix pink heart). The idea of doing that sort of swap didn’t bother me, what did was being reminded that I probably won’t drive again. I had already acknowledged that being the case when my legs started to get really weak but it just dug in a little deeper that it’s something I don’t get to do again and I’ve always massively enjoyed driving.
There is though something of a weird positive in my situation in terms of making it easier to accept. If I knew I had to deal with the physical problems and consequences like not being able to trundle along in my little Corsa for the next 2 years or for the next 20 I’d expect it to be much more difficult to accept and cope with. I can take solace that I won’t need to deal with it for a long time so might as well just enjoy the sweets from the passenger seat.