Post 105: Motivation Mirrors Mood.
We cancer patients get up in the morning with the vain intention of being OK for the day. Every day.
It’s not because we can’t be OK — it’s because we try to be OK.
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I’ve just woken up from a dream — a rare dream, one I’ve remembered well. It’s odd — but that’s dreams for you.
I was on a short break in the mountains up north, in the Arctic Circle. And rather than enjoying a holiday, this was torturing my senses and pushing all my panic buttons around my fear of heights.
One minute I’m pushing someone up into what I can only describe as a rock-and-ice “treehouse,” perched precariously on a white ridge of snow. The next, I’m cacking myself as I look down through the rickety structure in horror. Then I’m suddenly down in a village on the lower slopes, being courted by friendly strangers in cafés and their homes, where I find I’ve no money to enjoy myself — but everyone around me helps me out.
I end up running down an icy road for the homeward pickup, only to start skidding on my feet down the road, looking like a gun-toting James Bond as I slide uncontrollably — but gracefully — down the gutter.
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Too much dreamy cheese, you might suggest…
But I know better.
Too little cheese — and an overloaded mind — me thinks.
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With the serious but essential home valuations tomorrow, I wanted to get up with positivity and stay motivated to help the process along — and help My Darling along the way too. So I snuck out of the bedroom, completed the pill and syringe routine, and headed down to Mr Vicious and the great outdoors.
Yep, my plan was as simple as it was small enough to achieve: get some weeding done in the back garden (and perhaps, if I had the energy, at the front too), and avoid being caught by My Darling for “doing too much!”
I donned my knee pads and gloves and, sheltering under a UV protective big white hat (just in case My Darling looked out the window), I got down and fetched out the leafy greens from the grey-purple slate chipping beds. Armed with a metal-bladed hook straight out of a horror movie and a bit of elbow grease, I filled a black bucket and completed my task. Wonderful.
I headed happily for the green bin to recycle the debris of my labour — and my phone rang.
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I threw the gloves down and hastily grabbed my mobile from a pocket.
The caller display made me worry.
It was my local NHS trust.
I swiped right and heard my name being asked for, and that’s when my heart sank.
“This is Ms S from the complaints team… I have an email from you and wanted to know…”
If you’ve read my blog lately, you’ll know that self-advocacy has plagued me to the extent I feel like I’m doing the job of a NHS employee — one who should be dedicated to looking after a vulnerable patient, Mr U.
I stood and fielded the initial pleasantries until she asked an apologetic question:
Did you (me) report in your original complaint the oncologist’s flippant and callous remarks? - made a few days after your PE (pulmonary emboli) during that first post-chemo oncology clinical meeting with Dr M? Did I miss something out?
And just like that, all the memories, the anxiety and pain I’d finally boxed up and sent away in yesterday’s email came flooding back and caused more tears.
I’d had enough of the strain of that moment in time. The complaint was supposed to help me offload it — but this was all too much.
I explained that I had not mentioned the aforementioned meeting and horrible comments because it made the complaint personal and all I wanted was for “joined up thinking to be enforced in the local NHS Trust”. If I made it about personalities you might not take have taken my complaint seriously.
But, I continued, “the trigger for making the complaint in the first place was the lack of empathy and care from Dr M in that meeting: and in your complaint-investigation-reply there was not mention of it which is why I have to mention it now. It’s crucial you know this and investigate it too. I know it was remise of me but I’ve now put that right.
She said she got it.
She said she was sorry she’d caused me to be upset.
She said a load of comforting words — as I dissolved again into a blubbering mess.
“It’ll be another 60 days, but I will indeed re-investigate your original complaint and start afresh on your new one. I’ll also ask a different oncologist about anticoagulation too. Is that OK?” she said.
I squeaked a “Yep.”
And that was that.
⸻
Mr Vicious, who was at my side all through that upsetting call, didn’t say a thing.
But then, he never says too much.
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I think my neighbour opposite might have seen me during the phone call — maybe he didn’t — but came over to me after I’d returned to emptying my bucket of weeds and he offered me a cuppa. Bless him. He’s a very good egg.
I declined the tea but stood a while and chatted with him. He’s a sage guy, and we chatted easily — this and that, valuations (but don’t tell the neighbours), life, and all the other stuff. Eventually, I got around to mentioning the call I’d just had. I explained and stayed strong.
He listened and comforted — without comment.
It was so kind of him to make time for me in his otherwise busy day.
By this time I started to feel sick and weak and made my excuses.
He went to work, and for the rest of the day I rested inside or slept fitfully in bed.
I did fess up to My Darling eventually about all of the morning’s happenings - but I wish I didn’t have to push more of my overthinking and worry onto her already burdened shoulders.
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I still haven’t heard about the prescription for my anticoagulant syringes.
Anima and the emails were dead quiet today.
I’ll start more self-advocacy tomorrow — as per bleedin’ usual.
I’m increasingly worried about the scan results next Thursday. It’s driving me mad inside — and I’m driving My Darling mad too.
The weeding was a bonus, and talk of moving home will now ensue.
But are we already under enough strain without a move on top of everything else? It’s for the best obviously, but there will be a high cost both physically mentally and financially.
The sunflowers are looking good — and one is already attracting bees.
That’s cheered me up.
My motivation and mood suffered today, but it’s a new day tomorrow.
Bright-eyed and bushy-tailed is what I hope for.
The ready-mix is still causing slow transits.
Chemo is such a flippin’ nuisance.
I’m still on the Bus.
With a long way to go.
