Expectations Vs Reality

It’s been a week and two days since we came home from the hospital. It feels like it’s been a month, or maybe it just feels that way because we’ve tried to fit a month’s worth of stuff in nine days. Coming home from the hospital was always going to be stressful (and frankly had been) due to having to sort out the care that would allow to be at home in the first place – in short, the local occupational therapists wouldn’t deliver the equipment I needed to be at home until I was at home, which I couldn’t return to until we had the equipment. If it hadn’t been for the efforts of Katy, the extremely determined hospital OT I don’t know where we’d be; you probably won’t ever read this, Katy, but thank you so much for your help.

Beyond the equipment point of view, we’ve had to organise things with the local carers and district nurses too. One thing I feel is particularly important to mention at this point and the one thing no one seems to be able to comprehend: without the paralysis of my legs from the nerve inflammation, I wouldn’t need any care or help. The only pain I get is muscle cramps in my back and legs, which is a side effect. I am not constantly on morphine or any other pain meds because I don’t need to be. There is an assumption (and this assumption has been made by my palliative care nurse too) that the instant you’re diagnosed as terminal, suddenly you’re in constant pain and likely to drop off any minute. Okay, maybe I’m a bit more tired than I was and I’m not as hungry – doesn’t mean I need some paracetamol, thank you very much. Don’t get me wrong, I’m very grateful that those meds are going to be there when and if (because some people don’t even need them at all) I need them but taking those sorts of drugs when you don’t need to? No thanks.

Another comment of this nature: while I was in the hospital, I ended up with a cough. Originally we (including the doctor) thought it was an air-con cough caused by the dry air but a few days later after turning the air con off, both my mother and I still had it. Because it wasn’t just me who had the cough, we were sure it was from the air-con. It was one of those really annoying dry coughs that doesn’t ever ‘clear’ anything but always gives you the sensation of needing to cough. Throughout the week, both of our coughs started to turn more into chesty coughs and the doctor noticed a crackle at the bottom of one of my lungs. A clear sign of an infection, you’d think? No. I was first given oramorph (oral morphine) and later, when that was deemed not to work, methadone (the drug they give to stop heroin addiction). Antibiotics were administered as well, but that they weren’t the first port of call makes me wonder whether everyone made the assumption that the cough came from the leukaemia instead of an infection. I don’t know how often people get coughs from leukaemia but I know an infection would’ve been the first thought before the terminal diagnosis, I just know it. Leukaemic coughs don’t happen to people without leukaemia, after all.

Also how ironic is it that with methadone, a drug you use to cure addiction, you have to be weaned off?

Anyway, I’ve gone off on a tangent. That’s probably going to happen a lot – bear with me, I do normally manage to get back to my point eventually which today is ‘expectations versus reality’. I’ve called the blog this because I just wanted to have a comment on what it’s like to be terminal versus what you’d expect, though I suppose most people don’t really think about it. I mentioned in my original post that I thought other people would take the news of my terminal diagnosis harder than I would and I think that’s generally how this whole dying process is going to go for me.

It’s not that I want to die; it’s more that I don’t see the dying as the sad part. What makes me sad is all the things I’ll not get to do, it’s the future that now won’t ever happen. I’ve spent the last 14 years working for a future I won’t get to see. I worked my arse off to get the grades I got (A*A*A*), with the goal to get into the university I really wanted to get into (Exeter) and I got my deferred place to start a course on English and Film in 2017. That place will never be filled by me. I’ll never get there. I might as well have not bothered writing all my coursework essentially by myself last year (my immune system was too weak to attend school after my stem cell transplant) and paying attention all the previous years, been one of those annoying sods who messed around while the rest of us were trying to learn. It’s just frustrating having had something of a life plan only to have it denied to you then watching others squander all their opportunities.

Surprisingly, arranging my funeral has been a relatively relaxing and non-distressing process. Having been diagnosed for 4 years now, the thought of how I’d like my funeral to be has crossed my mind once or twice. It’s been like planning a birthday party in some ways – over the years the things I’ve wanted have changed and some things you don’t think about until you mum mentions them in that subtle ‘mum’ way. Some time in the last week we spoke to a very nice lady at a certain funeral directory and managed to plan a fair amount of it (I’m not mentioning what arrangements I went with though because it’s actually quite expensive and if you want to know, you’ll have to come see at the funeral). It’s nice knowing we have most of the basics of the ceremony covered though like flowers, the actual coffin, what crematorium we’ll be at. Not sure on the date yet though, will have to let you know that one later!

That’s another thing about this whole dying thing. I know it’s unreasonable, I know it’s just me letting my thoughts get to me, but the doctor estimated that I might have a month left and part of my feels like if I exceed that month estimate then I’m not doing this whole dying thing right. Like I’m some sort of fraud. As I said, I know it’s ridiculous and it’s not true at all. I don’t know why part of me feels like this; I guess it stems partly from having to be so heavily dependent on others just to do essential tasks in the day. They don’t mind helping but it makes me feel like such a burden. Living with this sort of paralysis for a long term period is something I could not do and I freely admit that. Some people can live with being disabled like this. I can’t. It’s gotten easier as we’ve adapted and I’ve accepted it a bit more but in some ways (this will sound awful) it’s good that my cancer is killing me. This isn’t a lifestyle that I would want to live (or anyone to be honest). Sitting in chairs all day with backaches and then having to be hoisted into a new chair and doing it on the schedule of others since the hoist needs to people to operate it – I miss getting up when I want, I miss being able to adjust myself once I’m in a seat, I miss being able to lean forward and use both my hands for a task like eating. And I miss being able to drive or even be a passenger in a regular car and not have to use a bloody wheelchair taxi. This isn’t living. I’m going to die in a month or so and the past two months of my life will barely have been worth living at all.

Many people ask me what plans I have for my days now and I understand why they do it. It’s a secondary conversation to the “how are you?” routine. They want to know that I’m making the most of my days. It’s nice of them but I never know what to say to them – what is there to do? Am I supposed to suddenly produce a list of all the things that I’ve secretly been wanting to do since I was 7? I was never a social butterfly before, I’m quite content sat at home reading a book or watching television. That was good when I was a little cancer patient with no immune system but now I’m dying, suddenly everyone thinks I need to be out in the world experiencing things. I like going out occasionally, don’t get me wrong, like seeing Billy Elliot at the Mayflower on Thursday night was fantastic (thanks Kate for arranging that) but I went out to the cinema on Sunday to see Lion and eat and in the end, I would’ve much rather stayed at home. And going out isn’t easy anymore. Like I said, every car trip has to be made in a wheelchair taxi now which is criminally expensive and frankly, sometimes frightening, so we can’t take a quick trip to the shops (we live in the middle of nowhere) or to a cafe or whatever. Every trip has to be made worthwhile, I feel, to be considered doing. It’s all very well to want to be out and about doing stuff but it’s not that easy for us.

Essentially, then, what’s happened is that everybody comes to us. Another reason this past week or so has felt so jam-packed, I guess. Not that I’m complaining about having visitors, I just think the volume of visitors was a bit too much for us – which is our fault for bad planning. This week we’ll be a bit more cautious over how many people we agree to see in a day; I think when the next visitor arrives while the last is still there, it’s a bit too much. And with the phone constantly ringing (both mobile and home) it’s just felt like we’ve had no time for ourselves to just breathe. We’ll work on that balance more this week now that things aren’t quite so manic. We’ll also have to work on the mammoth pile of chocolate and biscuits that we’ve been given, which has come at a great time with my declining appetite.

Which brings me onto my final point (you can cheer, it’s nearly over) and that’s the overwhelming response to my last post on Facebook. I’d like to say thank you for all the comments and messages I received, I think I managed to reply to all of them in the end even if it took me a few days. I genuinely wasn’t expecting the sheer amount that I got; a large part of that was because of who many of the comments were from. People I hadn’t heard from in years, people I don’t think I’ve actually spoken to before, people who I could only vaguely remember. It was very humbling to have that sort of crowd to tell you in various forms how inspirational you are. But there were also quite a few people who sent me friend requests after too – the same sort of people: people I didn’t know, people I hadn’t seen in years, people I’d vaguely heard of in passing. I didn’t accept a single one of these. Why should I? Just so they could like my post and pretend they care about my situation? Likes don’t cure cancer, nor do shared posts. Being the dying girl is like being the latest fashion and people can be interested more for themselves than you and they’ll do things under the guise of helping you to make themselves feel better. I get that, but I don’t have to pander to it. Volunteer at a pet shelter if you want to feel better about yourself. I’m not going to let you use me to fill up your self-esteem. Bugger off.

I think that’s me done for this post. I had a lot more to say than I realised so I hope it wasn’t too long-winded and rubbish. A few people asked me in the comments for the last post to keep up the writing and I decided I still had things to say (obviously haha) so this blog was born. Hopefully it’ll give a bit of insight into topics you don’t tend to think about or just don’t talk about – feel free to ask or comment about any points raised or ask any questions you have generally. Don’t worry about upsetting me as it’s quite hard to do so and I can always refuse to reply anyway.

Thank you so much for reading!