Still here...9

Back home from 5 days in St Benedict's Hospice. 

New banister has been fitted on the staircase, a new fancy bed has been delivered and plumbed in. It's like the ones you kip in while in hospital, mind this one has a fancy air mattress that seems to adjust to your movements. They had similar in St Benedict's Hospice and it is quite comfortable once you tune out the infrequent air noises being pumped in or released. 

I think a wheelchair is on its way, too - I'm actually okay with this. I thought I'd be huffing and puffing about it and whinging my arse off that I didn't need one. The fact is that if we go for a walk, I may well need it to get back. I can concede I'm physically so far beyond fit or even close to a normal condition that walking upstairs has me out of breath. 

This is partly due to the fluid build up in my legs and feet. Proper weird. It's usually fine first thing in the morning, but then, as gravity kicks in, my legs and feet balloon up and become very heavy and cumbersome. Funny to look at though, and Lily now thinks it's hilarious to press a digit into my thigh and leave a lasting fingerprint. I pretend to be annoyed and she thinks it's even funnier. 😊 Liam just points at my cartoonish feet and laughs hysterically. It's nice to come home to such a loving and caring family and the gentle, supportive way they welcome you back to the nest. Little shits. 

Just kidding about the 'Little shits' comment. Well, kinda, but not really. You know what I mean. 

The laughs and piss-takes are another tool from the box of many that we use without thinking in order to deal with the shit that's going on. It works. I like it because it's a steam valve in a way. Not as good as a good cry I'd imagine, but still a release of emotions in a different guise. Some of the laughs mask a teary eye, especially with Lily. She's on the cusp of both laughing and crying at the same time. There's a beauty in that moment and I treasure it. I'm not sure why because I can see its a tussle of emotions, but for whatever reason, I am warmed by it and can feel the love being forced through the extremes of laughing and crying. Weird. 🫠

The new drug added to the mix seems to be working, though they have had to increase it twice for the effect to last as desired - that being all day. It's a painkiller that, so I've been told, works on nerves; which is targeting the back pain I get. I think I mentioned previously that my back pain is caused by the cancer having contact with nerves and triggering pain in my lower back and elsewhere. It's mad how it does it - there's nothing in my lower back or anything wrong with it, but because the creepy companion is tickling a nerve elsewhere (miles away) it kicks off like an angry drunk and lashes out wildly with bursts of excruciating pain. It's the only time when I've been asked to gauge the pain level that I've given a 10/10. Usually, I'd be reluctant to go anywhere near a 10. A 10 is the top of the pain meter. Like when you slipped off your BMX's cerated pedals and they spun at great speed into your shin. 😱😖🤬 

Visits to see me have been great and really lift me up. It's been mostly close family and friends for now due to them knowing I was home first, I suppose. At the moment, I'm forgetting who is coming when, double booking or it's clashing with appointments at the hospice, doctors or hospital. 

For a few days I put a complete block on all visits from everyone. This spanned my last day in the hospice and a few days at home. I had to. I wasn't sick of people or being rude, but we, as a family, had had a torrent of information in the span of a week and our heads were still spinning from it all. Obviously, the tip of it is knowing you're now officially dying and all options are spent, but with that comes the rest of the mountain, which carries the endless information about ehnd of life, the people involved (many) to help, etc. I was worried about Rebecca mostly. Still worried about the kids and my Mam and Dad, but the main reason I paused visits was my concerns about Rebecca. She wasn't falling apart or not coping - I just felt she/we needed the time to be still. To simply stop the ride for a short time and take it in and breathe. So we did. We paused. Briefly.

We cried in bursts. No long drawn out sobbing (which would have been fine) just sporadic jolts of sadness that we shared and allowed the tears to ebb and flow. 

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Bit of a break in the writing of this Blog 9 - I'll continue from here but know there's a gap of about 6 days of me doing bot all.  😇

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Wheelchair is here but I haven't tested it out yet. Things seem to be progressing now. I can see how you can see someone one day, then be shocked a week or two later and say something like, "I was only talking to him the other day." I'm not there yet, but I'm pretty sure getting on my bike is a pipedream, and booking a summer holiday would be a waste of money. To be fair, Easter eggs, which I love, may have to be bought and eaten as soon as Asda starts piling them on the shelves - they may already be out. 😊😋 Easter egg chocolate is tastier than the stuff you get all year round. It just is. Maybe it's the curvature of the egg or the memories attached. For me, it was like Christmas chocolates and treats that I'd try and make last. At least last longer than my siblings had and I'd have it stashed in a Tupperware tub under my bed, having a sly nibble each night. 

I cant seem to shake that pipedream I have of one final ride on my bike. I've no idea if this is going to be possible, but at the moment, it gives me a target to aim for and something else to keep me going. The hurdle I have is the general sodding weakness all over that now seems to be getting worse. I'm putting it down to the lymphodema. 

What's a lymphodema, Dean? I hear you ask. Well...

It's fluid. Fluid build up in your body. In my case, its in my legs and tummy. In my legs, when they are 'full', I have very limited mobility and they are very heavy. If I raise my legs and let gravity shift the fluid down and into my tummy and chest area, I have reduced breathing. Good innit? You can't win, man. 🤗

I've met with the lymphodema specialists and it looks like they/she can do something about it, but not to get my hopes up about getting rid of it altogether. Tis weird. 🫠 Very weird. 

The following links with the reduced mobility in my legs due to the fluid, but I've really wrestled with sharing it. I've been honest throughout these blogs and see no reason to stop now. 😄

So, a bath hasn't been a problem at all for me and there's nothing better than sitting/lying in there for a chill and wash. However, on this occasion, the usual hands on the side of the bath after pulling the plug and leap out didn't work. I got just beyond pulling the plug and it all went wrong. "Shit." I thought. "Shit. Shit. Shit." I thought, again. "Shit, shit shit, fuckity, feckity-feck fucking shit!" I thought and wondered what to do. My legs had swollen and were useless. Like lumps of pointless meat. Maybe if I put my legs in the air for a while, they'd start working again...nope, that'd take ages. I sat for a period of time mulling over what to do. The water had drained out and I needed to do something. 

And so I did what I didn't want to do and called for my ever enduring wife. The shame was building into a visible blush. She looked at me with my towel fashioned across my middle, had a giggle (we both did) and then began to make attempts at getting me out. Nope. Stuck. The only options were dismantling the bath or getting Liam involved. We opted for the latter. Within minutes, Liam had stepped behind me and lifted me out and on my feet. Absolute legend. Mixed with the embarrassment was the feeling of immense pride in him. My boy. My boy - lifter of semi-naked Dad. 🥲

Showers for me from now on. 

A bath lift has arrived, but I don't think I'll bother with it. Not yet, anyway. Like I said earlier, things feel like they're moving quickly now. 😔 

As a result of myself and Rebecca's efforts to remove me from the bath, the huffing and puffing, the pulling and lifting, we've both hurt our backs. Pulled muscles right at the bottom for both of us. Shit. We even giggled at that. 😊🫠

Something profoundly important and lovely:

Death and dying - same thing at different stages I suppose. How does one deal with it? Plan for it? The before and after bits? Regrets? All the things one might wish they'd done or said. 

It could be a nightmare to get your head into and around, if you dig down through it and try. 

I've done all that and come out the other side smiling. Perhaps not smiling like a loon, but beyond content and happy. As I said in an earlier blog, I've done stuff and in some small ways, here and there, I made a positive difference to a few people. I've loved and been loved - thank you, Rebecca. 

Now for the wonderful bit. 

I have no regrets and nothing left unsaid. What's more is that my beautiful wife knows this and she feels the same. In fact, it was her who broached the subject and said it.

It is quite the most amazing feeling knowing that you can die with the comfort of knowing nothing was left unsaid, and that the person you care about most in the world knows this too. 

This blog feels quite the change in feel and tone. Weird. 🤔

I'll sign off now and get cracking with blog 10. 

Remember...

Time is a mad concept - fill it with stuff that makes you smile in hindsight. 

It's possible (and acceptable) to wake someone up by just grinning at them. 🤣😅 Seriously, try it. 😂 it works.

Be kind to yourself. 

And....

Stay golden, you wonderful, beautiful people! 😍 😘