71. Still here…

Why do I always seem to start my posts with “it’s been a while since my last update…’? For someone who loves writing, and given how much my life has changed in the two months since my last post, you’d think I’d have been taping way like mad, right? So how come the blog’s been so quiet?

Well, aside from the logistics of relocating back to the UK, there’s been quite a bit of adjusting to do. And that’s been tough – tougher than I expected – and as a result, my physical and emotional balance has been up and down so much, I just haven’t felt in a stable place to write about it. One minute I feel great and want to write, and the next I feel like shit and the last thing I want to do is vent all that on here. So I’ve put it off. But it’s about time I got back in the saddle and open the laptop.

The emotional reunion

So back in May, Dad dropped everything and came over to Amsterdam as things looked pretty dire. As a seasoned F1 weekender, Dad packs light when he travels (at least, he does when he’s not with Mum, who has a tendency to pack her own bag, then put everything else she wants to take into Dad’s case).

So he rocked up on Brouwersgracht with a couple of t-shirts, some clean pants and a rugby shirt, expecting to stay just a few days. Three weeks later (don’t worry, we washed his smalls, and bought him some swimming trunks for the beach while he was here), we eventually headed home.

Meanwhile in Yorkshire, Mum had been relishing her space and managed to turn the house into a Chinese sweat shop; investing in multiple sewing machines, overlockers, embroidery, gadgets, more storage trolleys than Ikea, and a more colourful array of threads than a Nike Flyknit factory in the run-up to Pride.

But despite them both enjoying their respective ‘space’, they hadn’t spent more than about ten days apart in the 45 years they’ve been married, so their reunion was as emotional as mine.

Watching porn with the parents

After a week or so, things settled down, but even for a seasoned planner like yours truly, you never remember everything, right?

Like when your mates tell you to watch Normal People as it’s awesome… it’s worth remembering that you now live with your parents, and what your mates consider ‘awesome’ may not be the kind of thing you want your parents watching over your shoulder…

So after awkwardly making it through episode one, I opted to watch episode two the following night in bed. Donning my wireless headphones, I took myself off to my room, connected to my iPad and hit play. Slightly confused as to why the sound was quite low (but having already seen how much of episode one was filmed between the sheets), I turned up the volume and worked my way through the next two episodes without interruption. By episode four, I checked the volume again, only to realise my headphones hadn’t managed to connect to my iPad, and my parents (tucked up in bed in the next room) had probably also been listening the last three episodes.

Needless to say, I still haven’t got to the end of Normal People and am now working my way through Mum’s 101 episodes of Grand Designs on catch up.

Finding a routine

Despite the odd such hiccup in adjusting to life back home, we‘ve somehow managed to find some kind of routine… Dad pops his head around my door in the morning to see if I’m awake (or alive?!) or wanting a cup of tea… Knowing I have reminders set, Mum now pounces every time my phone buzzes and asks if I need to take my meds… We’ve figured out that when I’m in pain, the most comfortable chair is actually the sunlounger from the garden (now positioned in the lounge for Grand Designs)… And I’ve perfected my parking position on the drive to avoid scratching the car doors. I’m still looking for Kaneel and Pindakaas in the supermarket, but I’m getting used to the local coffee and have been inaugurated into the Friday morning Coffee Club, just in time for the cafes reopening. I’ve introduced Mum to Hello Fresh, added my green juice ingredients to the weekly shopping list, and managed not to consume my body weight in Fish & Chips… so far.

Welcome back to the NHS

Then there’s adjusting to my new Healthcare team. Lots has been written about the NHS – underfunding, understaffing, disconnected processes / systems… and when people heard I was walking away from my healthcare in the Netherlands, the standard answer was “You know you won’t get the same kind of care here, right…

Sure, I expected that. The quality of care I enjoyed back home was incredible. But I had to make a decision on whether to stay or move back, based on various factors, and whilst many of those would’ve kept me in Amsterdam (even more so if I had to make the same decision again now), but hindsight is a great thing and I had to decide in a matter of hours. I was faced with the potential of anything between two weeks and two months to live. And on that basis, the most important thing was to get back in good enough health to enjoy time with Dad and Mum. Whatever that meant, I’d deal with it. Given everything I’ve already managed, moving back to the UK, moving back in with my parents, and going back into the NHS system would have to work.

So having registered with my local GP surgery (who have been absolutely superb), I was referred to a new Oncologist in Leeds and arranged my next CT scan. I then received a phone call asking if I’d be happy going to the Yorkshire Nightingale hospital for my scan…

AN: For those outside the UK; the Nightingale hospitals are field hospitals set up across the UK to accommodate the anticipated demand from Covid patients. Luckily, most have never been used as the demand was less than expected. The Yorkshire Nightingale is one such location.

So when I received my appointment confirmation letter, all six pages of information stated in big, bold letters, that the site had never been used to treat any Covid patients, so I felt more than happy going there. On arrival, I wasn’t sure what to expect – Obviously it wouldn’t be as familiar as the VU or the OLVG in Amsterdam; I guessed it wouldn’t be as efficient; and I hoped I’d be in-and-out pretty quickly (without silly amounts of paperwork to fill in). What I didn’t appreciate was the Yorkshire effect.

On arrival, I was asked for my name, date of birth, height and weight. Unfortunately, “170” and “66” slightly bemused the Doris on reception. Here we go, I thought, and it wasn’t until I’d moved aside and an older chap in a flat cap responded to the same questions with “five foot four, love” and “a’ve no idea o’ me weight love, a few stone heavier than last year?” Aaaaaah the good old imperial system 

Next up, a nice chap called Andy appears to take me for my scan. Being in a field hospital, I didn’t expect much by way of ‘decoration’ in the scanning room, but it was almost identical to the décor in Amsterdam, right down to the sky and cloud images on the walls and ceilings. Andy had a friendly, Yorkshire accent, slipped the canula painlessly into my arm, and off I slid into the scanner. At this point I’m used to hearing instructions in Dutch, So like Doris on reception, I was weirdly confused when I suddenly heard “breathe in and hold your breath’ in English! Scan done, I slid back out of the scanner, at which point back home, the nurse would’ve taken out the canula and sent me on my way… not in Yorkshire. Andy wandered back into the room, saying “all done love, want a cuppa?” Whaaaat? I didn’t get that in the VU! “Yeah, love one thanks!” I replied, and Andy escorted me back to reception, before returning a few minutes after with a brew and a packet of custard creams! Happy days – thank you Nightingale!

The scan results

So despite the tea and biscuits, the good news from the scan kinda stop there, sadly.

The reason for doing the scan was to get an up to date picture of the progression of my extracranial (outside the brain) cancer. (My intercranial / brain picture is better seen with an MRI). We did this because the pain in my chest, back, lungs and hip have been getting worse, and I wanted to know if there’s still scope for further radiation to ease the pain, even if only temporarily.

I saw my new Oncologist (Dr Kumar) for the results yesterday, and her view is that further radiation will cause scarring to my lungs and is therefore not something she’d recommend.

What’s scarring?

I wondered that too. I’ve heard it’s not good, but only in the context of ventilation. (Dr Kerver told me that if I caught Covid and had to be put on a ventilator for a long time, it would scar my lungs, and they wouldn’t recover from it.) So yesterday I asked Dr Kumar to clarify…

Basically, radiation is never nice to your body, as it zaps / burns your cells. Clearly we want to zap the nasty cancerous cells, but zapping leaves scar tissue, and scar tissue has no elasticity, no stretch. Of all the parts of your body that need to stretch it’s your lungs – without elasticity, they can’t inflate properly, and lungs that don’t inflate are no fun and naff all use.

That said, scarring is a long-term side effect, and given my current situation, it may not be an issue for a while and, the reality is that because I have the disease in multiple locations, it may never be an issue for me as something else may overtake things. Additionally, Dr Kumar can only make a recommendation based on what she’s learnt about me in the past few weeks. So we’ve decided to share my scans with the team back in Amsterdam, and see if they have a different view. We can then make a call on whether there’s scope to radiate any more on my lungs.

The good news is that that is still scope to radiate my hip again, so Dr Kumar is speaking with the radiology team in Leeds to look into this. The pain in my hip isn’t as bad as my back and lungs, but if radiation holds off the risk of fracture a bit longer, and eases the pain a bit, it’s worth doing.

In the meantime, the pain in my ribs, chest and back all seem to correspond with the progression we can see around my lungs on the CT scan. So unless further radiation is feasible, I’ll just have to keep managing this with painkillers. Not great as I hate painkillers, hence I’m currently exploring / testing the extent of my pain threshold much more closely than I’d like! I’m pretty sure I could be taking a higher dose than I am right now, but I’m trying to put that off as long as possible.

Still here

So in summary; ten weeks ago I was given anything between 2 and 8 weeks  to live… and I’m still here. Yes, I’ve lost a lot of my independence, yes my energy levels are low, yes I’m in pain all the time, and yes I’m not where I’d like to be right now. But I’m alive, more alive that anyone gave me credit for ten weeks ago. I know it’s not going to get any better, I know things can change fast, and I know that could happen at any time. But while I’ve got my sunlounger, Kevin McCloud on demand, and Mum and Dad’s attempts at planning their very own Grand Design* for entertainment, there’s life in the old girl yet!

*That’s a whole different story 😉

#BoxyOut