Post 160: If you’re already low; please skip this post!
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After two days (and the night in between) of increased struggles with stuff like putting on my dressing gown and getting on and off the loo — due to throbbing pains in my torso and aches in my arms — it’s finally time for some frank discussions about “my needs now & in the near future” — just the two of us, my Darling and me.
Well, my Darling and me to start with, and then some “agency” to set things in motion for the best advice.
I think back to my late mum’s needs and all the necessary things that were added to her flat and around and about her that enabled her to be independent. Right now I’m not mentally ready for this talk, but after the trouble I’ve had this weekend I’m definitely needing some physical help — now!
This realisation came at the cost of a few tissues and the horrible sound of silence…
I sat my Darling down on my side of the bed and spoke to her like I never ever have before. I was frustrated enough to want to let the words out but not angry enough to blow my top. As per usual, her reaction at first was to just listen, even when I was asking her to tell me what’s inside her pretty little head.
I got so angry — repeatedly asking for a conversation — but still she sat there in silence. Just listening.
In the end I broke down and couldn’t hold in the close-on forty years of my Darling hiding behind the silence.
There it is. I’ve now said it, groom to bride.
“You have locked up so much in your head about things you don’t want to talk about and deal with,” I said, “especially death, especially your mum and siblings. It’s not fair that I can’t speak to you about important things like that, which we both need to deal with now — this just can’t wait.”
To put it bluntly in black and white: I’m facing an escalating chemo / cancer / aging problem that is not just affecting me. I’m not well and this weekend has been a wake-up call for both of us — me especially — to get all the assistance I can for everything I’ll soon need.
My Darling was quiet for a while. I think my desperation came through at last and the penny finally dropped.
We need to prepare, while we can, to make our lives as comfortable as possible for the unknown future we are flying towards.
This weekend was a blip — but it could be repeated again and again, each time getting more uncomfortable.
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We later had one of those “don’t know what to say” cuddles that need no explanation — it was just love passing between us. It ended with a warm kiss that wipes all slates clean.
We will do some thinking and talking this week; we must use the good times for a whole lot of prep for the bad times. After that we can relax and enjoy the time I have in a happy and fruitful way, together.
This weekend has been a nightmare, but it needn’t have been so bad. Learning from our mistakes is the human way. I hope both bride and groom have learned a bit about communication and planning. Time will tell.
Starting with the bathroom redevelopment, we need proper advice to install all the gadgets I might need in the future. It’s not what I want (to feel incapacitated, disabled, useless) but I need the stuff to keep me safe and healthy.
The bus rolls on relentlessly — one more stop and I can hop off this one for good.
The blood test on Friday will be the only thing that can stop me — with a rising PSA or very low red cells — but I’m sure it’ll be ok.
I am ever more worried about my health but it looks like the drugs will fix the problems as we find them.
The BB (Boy Brigade) moto is: Sure and Steadfast.
I’m the anchor in our relationship: I always was and always will be.
PS
I’ve rung (NHS) 111 for medication advice for the horrendous pain I’m still in. It’s 12 midnight and I can’t have any more Oramorph until 2am. Help!
PPS
It’s 2:30 and I’ve been on the NHS111 merry-go-round and they’ve advised me to talk to the hospice.
“Oops! I did it again”.
While I wait for advice I’ll take my 2am Oramorph 
(better late than never).
PPPS
The hospice have made a note for the day nurses and doctors to get back to me later this morning,. There’s nothing more anyone can do and I’m now using a distraction technique that will take my mind off t gongs, a Christmas movie.
I’m happy with that lovely chat with a night-nurse that couldn’t have been more helpful or caring if she tried — especially at 2:30am in the night.
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I really don’t want to be drinking soup out of a straw any time soon but these steps which I’m climbing right now could see me in a riser recliner rocking chair before too long 
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Good night everyone, I’ll get my meds adjusted later and I’ll be myself again sometime soon.
