So, how am I doing?

Once more, it’s only been a few days, but a lot seems to have happened…. and yet with the weird time dilation thing that is now present (for reasons I’ll expand on) it feels like it’s been weeks since I typed the same thing. Odd.

OK, in short, improvement, I think.

There’s a bit in Apollo 13* when Jim Lovell says “We’re all out of whack. We try to pitch down but we yaw to the left. Why can’t I null this out?”

He’s talking about flying the stricken spacecraft, but this is how I feel a lot of the time since starting the slow-release morphine. Don’t get me wrong, I know it’s the right thing to be doing (although I needed persuading over my fears around morphine), but it’s definitely added yet another level of complexity to something I already can’t fly properly.

Ever since I had Whipple’s, things have not worked as they originally did. I got no feedback from being full/empty/needing the loo, and it took some time to get a handle on any of that. My body had completely changed overnight and learning to drive again (once I actually started eating after 2 weeks when my stomach was ready to do so) wasn’t a process I completed before Jan 13.

And since, it’s been this multiple-variable equation that I’m trying to solve with a black box where sometimes the answers come in 15 minutes and other times it’s 24, maybe 48 hours.

I now know pretty quickly if I’ve eaten something that feels OK to me once I’ve eaten it. Crisps spring to mind – they’re actually not that great for me (although they are good in terms of their physical pick-me-up effect). They feel a bit wrong inside after 15 minutes.

Feeling full? I don’t get that until typically it’s too late. I’ve not been a glutton, but there have been a couple of times I’ve over-done it, and then an hour later I know about it. It’s been OK (and I’ve never been sick because of it), but all those signals you build up as an infant are different (if present at all), and initially I had a few weeks where I acted slightly like I had an eating disorder, and became scared of mealtimes. T was mega during this period and really got me through it.

But now, back to the present day. The Zomorph has totally changed how I am – and I’m still trying to learn anything about the controls.

During Chemo (round 2 in particular) I got brain fog. But prior to that (probably because things were already not right with me), I’d been feeling what I have called ‘behind’ and it took quite a bit of drinking to clear that each day. I’d get there most days by lunchtime and then mentally feel sharp. But this is something that hasn’t gone away. I know that some people say they never recover from brain fog from chemo – even after many years – but this is something different I think, and my system is clearing waste via urine. My wee lightens, I get better and feel more in control as the day goes on. Some days I might even feel competent to operate heavy machinery.

This has been much worse though. It’s gone beyond being just ‘behind’ to really feeling incapacitated at some points mentally. When I feel behind, even if it’s bad, I always feel like myself inside, just ‘slow’ (hence calling it behind) in terms of reacting to the outside world. It’s like there’s a delay on the way in for the information and the same on the way out – that’s the best way I can think of it. It’s like one element of being drunk. But internally I always feel mentally competent as I have done.

But over this week, during the worst bits (which tend to be the mornings after eating breakfast and often my first snack), it’s been bad. I’ve really started to lose acuity and had to really concentrate hard for some things. In a position where it’s not just I wouldn’t drive, it’s that I wouldn’t be able to perform much simpler mental tasks.

So I’m hoping that this is just a case of needing to do more in terms of hydration. When I was on chemo, I would get up twice in the night to drink as that made a huge difference in the mornings, so I’m trying that. Because I think waste product removal and hydration are an important part of this, and with all the other assaults that are happening to my GI system with the antibiotics (which finish at the weekend, so hopefully this will help out there as there are issues there as well!) will lighten the load.

Talking of which, T has been working incredibly hard in terms of getting medication to be do-able. She is incredible – trying to balance getting everything in at the right time versus not facing me with a massive wall of pills to take. We’re working on it together, but in reality she’s taking my demands into account and then tweaking things slightly to make it less intimidating at meal times and so on. At one point a couple of days it became a bit too much for me. I just broke down. There are so many pills to take and they all need to be done at the right time and the right condition (in terms of food intake prior, etc). And she just keeps working to refine both timing and delivery like an absolute trooper.

It’s all being done. It’s all being logged in the app so nothing gets missed. Take a look at this:

This is where it’s currently at. And she’s reworked this multiple times to get here, and it’s best to have a visual look-up rather than an app (which is good for logging but not for at-a-glance-what’s-next moves).

So, I make that 32 pills per day as a ‘standing order’ (some of those are multiples), plus any Creon needed for snacks. And she’s worked so hard to get just this one element right, let alone constantly refining what we’re eating so I feel like eating as my taste has changed. All feedback on the food has been taken well, and I cannot think of anyone who could do this with such grace, as well as turn out food that is still a joy. We’re both hoping that once the antibiotics are off the roster and steroid dose decreases that things will improve on that front, as my favourite coffee, for instance now is not a pleasant experience, when I used to really look forward to it after finishing my Real Python work mid-morning. I know that’s a first world problem (particularly at the moment), but it’s just to illustrate how much things have changed.

Anyway, TLDR:

I’m feeling better, and according to T moving much better, which was a surprise as I didn’t think I was. But we got a lot done yesterday. Got rid of some stuff of mine which needed to go. And it was so much work for T – giving things away on the internet is a real pain, and I can see why people just take things to the tip. Yesterday really took it out of us both, but T in particular, so we need to take it easier.

Aaaand finally…. I’m just saying this because it was the cause of so much needless friction and bandwidth yesterday, it was incredible. Health stuff has stopped here, this is just a story of yesterday.

What I needed to get rid of quickly – 2 old ebikes. The bike shed is unsuable as it’s full of bikes, none of which I’ll ever ride again.

One was a PowaCycle thing that was my first ebike cheap project. Needs a battery, it’s horrible, but all the parts work OK. For FREE.

The other was my old ebike (Carrera Crossfire) which is still a good bike. But needs a battery. You can buy a brand new one for £250, fit it and you have a bike which will be worth £500 on a good day. For FREE. We just needed to clear the space, and then there are others.

Anyway, the craziness started. I put a note in my Gumtree ads that I’m ill and don’t need to be messed about (Gumtree is terrible for this). And got a barrage of inappropriate religious-based comments about my health from one guy, instead of anything about the bike. It really upset me (and T found it inappropriate as the guy could just pray for me without sending me 6 messages saying that he was healing me in Jesus’s name).

So I blocked him in the app. Which blocked everyone because sometimes the app calls everyone Darren (I know it’s a common name but come on….). And it became an absolute mess.

But even when that was taken care of (bikes were also on freecycle), it was difficult. People getting picky about what they’re getting (does the battery work? No, it says so in the advert). Do you have X, Y or Z? Can I pick it up a week on Tuesday? (Ad says first come, first served). Etc. Absolute trial.

When a guy picked up the good one, he didn’t ring the bell or say he was picking it up (it was ready outside as I don’t want people in the back garden looking at this that and the other). So the two (broken) batteries I had for it, charger, keys, were all on the kitchen table. Just ring the doorbell you idiot. So he had to come back later in the afternoon.

The other one was slightly less annoying, but you still have to message the 45 people who’ve said they’ll pick it up tomorrow or whatever.

One guy even messaged late in the evening, when the ad had not only been deleted, but it was updated prior to say it was being collected!

It’s never been harder to just give stuff away, and really tired T out as she took care of all of it as this coincided with my mid-morning brain going offline which was a bad idea!

Right, I’m done. Taking it easier today, but still keeping moving and trying to go forwards physically to combat the weakness that’s built up (to a degree).

* Yes, the moon landings were real. Yes, Apollo 13 happened. I’m talking about the movie, which is one of my favourites as it basically could have been custom made to appeal to me, so targeted in terms of content and filmmaking.