Post 272: This is truly bad on a good day.
The last few days I’ve not had much to say, so I’ve preferred to sketch something down in the form of poetry. This is more for me — to rest my fingers and mind and entertain myself with riddles and rhyme — rather than tell you what’s happening, which hasn’t been much fun.
But today’s rise in pain in the writing arm is worth moaning about, on a day that started with questions and mind-trawling and ended with mind dancing.
The love issue was not raised by me until the counselling session was over and we — the counsellor and I — were walking back to the reception area to meet up again with my Darling, who was patiently waiting for me to get back.
I hadn’t got my head around the issues of love and children, but we chatted over many other things, including writing a list for the final curtain. That is, the things that you’d prefer to happen when the time comes for the reaper to come and find you.
Funnily enough, I had asked my Darling, after the SR1 form was signed last week, if we could go and sort out my funeral wishes at the local post-hospice-transferal-station’s-office. She said yes! Hurrah!
So next week we can start the process of arranging my last show and party.
If you think I’ve seen the reaper in the distance, please don’t worry — he’s nowhere to be seen and I’m not thinking about anything but survival and self-care just now. Please don’t worry.
But the SR1 form has changed everything, to be honest. The worst is that my Darling has become stressed and physically ill because of it. This is horrible and worries me.
I realise that I’ve looked like death warmed up lately — in my face — which I don’t often have to look at, thank the Lord. I’m not aware that I’m looking pale and unwell, but I see it when my Darling looks at me. It’s then that my heart sinks and I see terror in her beautiful eyes.
I’m now a terror — a slow walking, stooped old git that rides the stairlift and sneaks about, sitting down waiting for a gap in the tv transmission or eating food that will pause the captivating TV programme on the massive screen dominating the lounge wall, and me.
I don’t mean to be so useless and bumbling, asking to be driven everywhere all the time lately. I’m a drain on her strength and positivity. I’m a changed man from who I was before the chemo.
The chemo, for me, continues to be the worst thing I’ve ever experienced as a treatment. What was hailed as the all-conquering poison that was going to free me from the cancer for a while — became a trial of patience and physicality.
Looking back, it’s not been kind to my Darling or me. And now I’ve chosen to relax for a bit and recuperate, I realise these desires to be healed are balanced with the physical limitations of man (or woman).
I’m still losing hair — which I put down to ageing — but inside me I’m witnessing a one-way road which I’m inexorably being forced down. Perhaps it’s time for a closely cropped cut? Or will that really upset my Darling — but most of all, me?
I’m not going to go there yet, but it’s on the cards.
So that was all triggered by my wish to get one step ahead of the game and get organised with a funeral.
Moving on…
We arrived back home from the counselling and my Darling made me lunch as she was organising herself for her nail-bar appointment a little later in the afternoon. Spicy minestrone and a brown bread roll. Oh, what a lovely warming bowl of wonder it was. And although I wasn’t ready for it, I did have every drop, which set me up with the strength for some long calls to the DWP as soon as she left for the finger-painters.
As I kissed my Darling goodbye I could feel the sadness in her lips. Yes — even her lips.
She disappeared out the front door, waving and shouting greetings of love and affection, as I grabbed the notebook and both forms and set myself into gear to get some work done.
The first and second calls were both to the DWP, and both to ask the same question:
“What do I have to sign on the form now there’s an SR1 form in my name on your system?”
The simple answer from both was: “You don’t need to fill in or return these forms.”
In terms of Colditz — the board game I loved as a kid, and whose creator Pat Reid lived down the road (not a lot of people know that 
) — I had been given a fabulous escape card.
Knowing this, I was bursting with happiness. I’m hopeless at filling forms and this get-out-of-jail-free card was everything I needed just now. Also, I’ll get a bit of money too, which can only help. If I had the strength I’d have danced around the room. Yippee!
I made the final calls, which were less urgent, and checked up on Big Sis in her flu-ridden bed. She was looking after herself by resting, book in hand,. She was a bit better which was brilliant news.
Much later my Darling, with her newly painted green-tipped nails, arrived home smiling and sat down cold and tired beside me. She’s not often cold ever, so I tucked her up in a handy throw and held her cold hands to warm them up.
All evening she was below par and bleeding yawns, so just after seven we headed upstairs to bed. Bye-bye, we said, in exchange for more yawns, and we both pushed our respective bedroom doors closed.
I was glad to be in bed, but even though I badly needed rest I had so many aches in the shoulder and arm all the way down to my wrist — unusually so. I’m longing for answers on Monday as I meet my new GP for the first time. I just hope she finds something wrong that can be put right.
So here I am, moaning as usual, on my eldest’s 33rd birthday. He bought some new boots and has some walks planned for tomorrow, with his loving bride.
So I’ll be off to the land of nod, hoping that I’ll be refreshed and happy in the morning.
Have a great night’s sleep.
Good night all.
