The Waiting Game

Is it a surprise that I didn’t manage to keep to my self-imposed posting day of Monday? I don’t really know why I bothered setting a day – I’ve got a serious problem with organisation and a tendency to nap during the day. Not a good combination for regular updates.

But I don’t want to be the sort of person who rushes through writing a blog just so I can upload it on a certain day. If you’ve been messaging me, you’ll know I’m not a fast replier but I do reply eventually! It’s the same with blogs. I want to be happy with what I’m writing before I post it, even though I’m pretty sure I won’t beat the ‘Expectations vs Reality’ post. I’ll keep trying (but no promises).

Trying to find things to write about has gotten harder as the weeks have gone by; my parents and I had something of a conference over dinner on Saturday night. I don’t want to cover the same sorts of things but it’s hard to find new subjects when it feels like nothing changes. And, I thought, maybe I’ll write about that – what it feels like when you’re waiting to die.

You might get the impression that it’s a bit monotonous. You’d be right. I’m still waiting to feel really ill, to be bedridden, to need a lot more help. When you get told you have around one month to live, by the time that month deadline comes a-calling, you expect to be feeling a bit under the weather. But doctors are human too and I guess there isn’t a textbook way to die. Maybe that’s what scares people: the unpredictability of it. I’m not scared, though. Maybe a bit sad, but mostly for my parents; I can’t imagine it’s easy to watch your child die. It’s not easy to watch your parents watch you die either, I can tell you that. You don’t hear about the dying kids who wanted to see their parents retire but I think that’s sad too.

Now, the monotony took a few weeks to settle in. The first week or two felt very busy – I must admit that I tried to get as much as I could done in the first few weeks just in case things went downhill faster than I expected. So all the funeral plans, the humanist, the “will” – once all that’s done, what’s left?

You get the visitors too, but I already wrote about that before and I don’t have much new to write about the topic. It’s nice to have them, just not a horde of them at once. Over the weeks, it’s tailed off so we’re not overrun anymore anyway.

Let me tell you what’s left after all the official stuff is done: the waiting. There’s nothing else you can really do until your body gives out on you. Maybe you have some sort of bucket list and you might tick off points on your list – it’s a very personal time. Me? I’d never really appreciated what a privileged childhood I’d had until people started asking me what my bucket list included and I could think of nothing. My parents gave my brother and I some amazing experiences in our youth; I can honestly say that I don’t feel like I’m missing anything at all. And all these people who want to meet celebrities – it’s such a double edged sword. An awkward double edged sword. You should never meet your idols, they say. Whoever ‘they’ are, I’d say they’re right. After all, your idol might be a class-A dickhead.

But what happens when you’re not fulfilling some crazy bucket list item? You sit at home. You sleep. You watch crappy TV programmes like Come Dine With Me and pretend there isn’t a countdown above your head. It’s quite easy to forget, actually. I don’t wake up every day and think ‘I’m going to die soon’ – how morbid is that? Generally I wake up and think about how I wish I could move my legs; my lack of mobility seems to be a much bigger problem for me than my impending death. Every so often, I’ll have a dream in which I suddenly just stand and it’s the fact that it feels so real that crushes me when I wake up. You can’t understand how uncomfortable it is to not even be able to shift your hips when you’re in a bed or a chair for several hours. Especially when the mattress feels like it’s made of brick.

(If anyone cares, the rock hard mattress got replaced with a supposedly softer one today!!! Oh, and I just realised that most of you won’t know about my current bed situation so I’ll just quickly explain: I currently sleep in a hospital-style single bed (RIP my comfy double bed) that has electric functions to make it incline and such. The initial mattress was an air mattress to make sure I didn’t get pressure sores for when I became more bed-bound, but it’s one of the hardest mattresses that I’ve ever encountered.)

A bit off-topic there. I’m sorry. Let’s talk about a new-ish element of my life: carers. They come in once a day to help hoist me out of my hospital bed at 11 o’clock in the morning. It’s difficult, because you never (or rarely) get the same carer the next day – this is good for some carers, bad for others. The problem with having so many different people help is that they all have their own ways of ‘helping’ and most of the time, it doesn’t work with the routine my mum and I have established. Our way involves as little help from the carer as we can physically get away with; this, consequently, makes the carer feel like they’re not helping enough and they try to overcompensate which is just annoying. You can tell most of the people they care for are older, require more of them. I think they’re remarkable for doing the job they do and they’re all very nice, it’s just frustrating when my parents have the whole hoist thing super slick (most of the time). And part of me does feel like the carers could be of more use to someone else; I mean we literally just need another body to control the hoist and that’s it.

But at the same time it would be great to have another person in a cupboard that we could pull out every time I wanted to move. For quite a significant portion of the day, I’m stuck wherever I was last left. Most of the time it’s on my Riser Recliner chair but my other options are my wheelchair or my hospital bed. Other options if you want a difficult hoist are the normal sofa and my old bed. It’s a really wild choice. As the days go on, it gets harder to care about getting up – the day’s going to be the same as yesterday, why bother? The waiting game continues. At least I don’t feel ill, even if I feel super restless. How do people with long-term disability do it? I try to tell myself at least I can use my hands and arms but it feels like a consolation prize.

I didn’t quite expect the blog to turn out quite like it has when I started it. I want to explore the areas of cancer that you don’t really see, but I do wonder if sometimes I cross that invisible line. Is that good or not? Anyway, I can’t say when the next post will be – I’ll try for Monday but who knows? And if anyone has any subject ideas or things they’d like to hear about, please leave a comment or a message. I will get back to you eventually!

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4 thoughts on “The Waiting Game

  1. Maddi u really are inspiring….lol!! No seriously I look forward to reading your blog …i hope thats not a weird thing to say given the circumstances. Your honest thoughts really do give an insight into what you and your loving family are going through. I cannot believe what the waiting game must be like for you all but it must be a small comfort to your family that your not scared. Lots of love to you all xxx

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  2. Mrs Davies here Maddi from Learning Support Corfe. I really enjoyed working/assisting/making your years easier at school. Seeing your beautiful smile and determination at that computer spurred us on. I wish you a pain free journey and may your wings take you to beautiful places. Lots of love brave girl and family xx

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