Accepting Help

I’ve never been great at this. I’m not quite as independent as T is… but I’ve always wanted to do things myself if I can. Partly because when I’ve had them done by other people they’ve often been expensive and/or substandard but also because I like doing things. I like being capable.

But when it has come to the last 9 months or so, I’ve really had to change this attitude.

Firstly, because when it comes to medical stuff, there really are experts. Joe Rogan, the Gibsons (both Mel and Belle) are not experts. AFAIK I’m aware, Joe Rogan isn’t an expert in anything other than MMA. He’s definitely not an expert in anything I’ve heard him talk about that I know much about. And people like this do damage. Real damage that they don’t have to deal with the consequences of. Detoxing isn’t going to fix your cancer – certainly not my cancer. But people will tell you they know people who have been completely cured by drinking coffee or juice or whatever. And never have to deal with when it goes wrong. Bullshit is the new economy, and Rogan, Trump, Musk, whoever, are all swimming in it. Say anything enough and proclaim yourself an expert… and people will think you are one. And yes, if you’re a Musk acolyte, I’m happy to go toe-to-toe on that one – he’s a bullshitting racist charlatan who has got lucky and thinks he’s the world expert in everything he does… except those who work in those industries tend to disagree. And if you think Trump is playing 5D hyper-chess, you’re just plain wrong.

So… anyway, back to accepting help. When I first ended up in Bournemouth Hospital I was in a bed next to someone (we shall call him Alan, for that was his name), who was flat out in denial about his situation. And it was not making things easy for his wife, or those treating him. He was very ill. But he just said he was fine all the time. Nothing wrong with him. No need to be here. Said this on the phone quite a lot. And loudly to the staff.

I had no idea of what was wrong with him until his surgeon came in and said (in an earnest way that italics will not do justice) – “You’ve just had SIX stents fitted”. SIX. That’s a lot! He clearly was ill but his refusal to accept it and be more concerned with whether the Jag’s windscreen washers were working was making his wife upset and his medical team frustrated. There were several other people in similar boats, one of whom wanted to discharge himself as he “had a social life to lead – something you wouldn’t understand, little lady”. To the senior consultant who was treating him. She was dignified in her response in a way I couldn’t muster if I’d had a week to prepare for it.

Witnessing this was life-changing. No matter how scared you are in this kind of situation you have to accept help. Yes, it may not work, but it’s the best thing on offer and isn’t just pulled out of someone’s arse or half an hour of wikipedia skim-reading. Or from watching Joe fucking Rogan, or being on Facebook – it’s not alternative medicine, it’s quackery. Deal with it.

So as things looked to be more serious I decided to embrace all the help that I was eligible for – not only medically (because I planned to be alive as long as possible) but also anything that I was eligible for legally. If I qualified for it, I (or TBH more usually T!) applied for it, and took it if it was granted. At the time of some of the applications I felt pretty bad about it (because I didn’t feel like I really needed it), but I did it because T reassured me it would make her life easier, and that’s my main concern – even more so now.

So, here’s a potted list.

Blue Badge. Yes, I have a disabled badge. When we applied for it, I thought I’d never need it – getting to the toilet quickly and having much more chance of being able to park where we needed to just seemed so selfish. And yet, it’s been used more in the last month than I thought I’d ever do. Only yesterday on the way up to the Lakes it was the difference between a convenient trip to the loo and ‘only just making it’. We don’t take the mickey, but when it’s needed it is really life-changing. Shout out to Donna from STARS for suggesting this.

Radar Key. I’ve only used this a couple of times, but again, in the “I can’t wait” stakes it’s important. There are times when I’m literally unable to not go to the loo, and this is the difference between it being fine and it… really not. Again, I make sure I’m out of the way ASAP and clean the place up, but having a loo where you’re not interrupted (ironically I can need to get there quickly but then take 10 minutes to finish) is life-changing in a good way. Big shout to Bel for this – she thought of this and we got it sorted

PIP. Personal Independence Payment. This was pretty much taken care of at diagnosis by the medical team. All the paperwork is in place and if you have a terminal diagnosis you qualify straight away. You don’t have to take it, but it’s been the difference between being able to pay bills and not on some months without digging into savings. I’m lucky that I have passive income from book sales still, but this doesn’t cover everything, and PIP has made up the shortfall. There was a probably 2-3 week window when I stopped chemo when I could have worked some computer work, but those times are now gone – I make too many errors, and TBH my time is too short to think about it, even if I was capable (and yes, I’d earn a lot more if I was working than I get with PIP). PIP also opens you up to other benefits (for instance we would have been able to avoid the M6 toll cost had we planned ahead), but you have to to quite a bit of research to get that in place and I’ve just not got the brain space to do it all.

Access Card – this allows queue skipping and access for a carer (which is T in case you’ve not been following along at home) if you attend events. We’ve not used this (and TBH I think I will not be needing it now), but it is proof of status recognised by events and locations across the country. Again, shout to Bel for this which she makes use of as she is in receipt of PIP.

Just Can’t Wait Card – no, not a reference to the classic Nu Shooz track of the 80s. But a card that gives further access to toilets not normally available. Only heard about this a week ago so still waiting for it, but again, if it avoids a horror moment at some point for me, it will be worth it. Thanks to my palliative care nurse Rachel for this information.

Help from my wife. This is probably the biggest one. There is nothing that’s too much trouble for T for me. And I will be honest, I found this difficult. It’s not about being a kept little child who can’t look after himself, but she is monitoring my situation and between us we’re making the best use of the time that we have left together. She’s taken responsibility for medication timing (I did this when I was during chemo but I found it exhausting), but also she’s clearer headed about it than I am. Some days I still feel like I want to forget about it all and somehow it’ll be OK. But that would be dealing with the following:

• PERT – the Creon I have to have with every meal or I don’t absorb it (and get other undesirable side effects)
• Multivitamins – recommended after my surgery.
• Omeprazole – needed because of my whipple’s surgery – my stomach is connected to my small intestine via a new joint which needs protecting from stomach acid.
• Paracetamol – 2 of them, 4 times a day (8am, 12pm, 4pm, 8pm).
• Some mega Ibuprofen whose name escapes me (10am, 6pm).
• Metaclopramide (anti-sickness pills) – 2 1 hour before each meal.
• Dexamethasone – steroids once a day

So that’s maybe 30 pills a day. Just to stay on the ‘even’ keel I’m on at the moment. It’s a lot, and she takes this on for me. But she also prepares breakfast each day, and most days does the ‘mega complan’ which is a shake that makes sure I’m getting a balanced intake of vitamins and minerals, but I take care of it when I can when we’re at home as I want to do as much as I can while I still can. I still empty the dishwasher and make her a cup of tea in the morning.

It took me quite a while to get used to this, and not to look at it as a little boy being looked after, but because there’s a huge load that needs to be done and my body is busy fighting as hard as it can to stay alive against an unwanted and frankly pretty bad-mannered intruder. The airbnb review would deffo be a zero for this guest.

Help From Friends – this has been difficult. I’m not going to name names, but one couple has helped with DIY stuff to help finish parts of the house off that I just didn’t have the energy to get done. Others have helped wth financial advice and connections when everything was in a mess (and this is now sorted thanks to their sage advice and connections). Another couple helped with other DIY tasks and checked in on us and supported the kids and T when needed. Others have provided food in the early days when T was too overwhelmed to cook. All stuff you’d normally do yourself, but when you don’t do it, life gets worse, and having that safety net and a leg up has been fantastic.

Accepting help isn’t easy*. But it can make your life a lot easier than the discomfort it can initially generate. If I hadn’t taken all the help outlined above, I would have had a lot of worse situations (both individual and ongoing) and I’m sure I wouldn’t be where I am today. (Which at the time of writing this is in the Lake District with a rapidly-improving weather outlook).

* For me, at least