Post 94: Blogging swings and Rollercoasters.
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The pain, in the main, will remain a strain.
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My back pain is worse. It seems chronic now, and even though the hospice doctor kindly wrote to my GP yesterday, it’ll still be a while before any gabapentin makes it into my hand.
So let’s not go over that ground again — I’m unhappy and, at times, in unbearable discomfort.
Sleep is a cycle of catnaps, and tiredness, as you all know, exacerbates every little thing.
What can I do but wait?
Let’s talk about something else…
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In better news: I had a reply from the RNLI about Mum’s ashes being spread at sea.
It was mostly a generic response, but they advised me to contact the local RNLI station, as each one makes their own decisions about whether, how, and when such things are possible — understandably so.
Also in better news: one of my blogs has been picked up by the Macmillan team to be featured in their Guest Blog spot in the last week of July, and again in the Online Community Newsletter in August.
It’s being used to raise awareness of the challenges in getting joined-up care when you’re dealing with more than one NHS discipline.
Blog 44 captured my utter despair — being batted between cardiology and oncology like an unwanted shuttlecock, no one wanting to deal with me on their side of the net.
It’s not the only article on the topic — another person’s blog will be featured too — and together, we hope to inspire some honest discussion about joined-up thinking in healthcare.
I’m proud to be helping others speak out. If it makes even the tiniest difference to someone else, that’s a positive.
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Swinging back to yesterday’s blog…
I was told off — first by My Darling, and then later by my eldest son and his wife, who video-called me with a buzzy bee in their bonnet over my “bouncing baby birth bonus bankroll” idea.
I’m sorry my thought of incentivising a new generation upset people I love.
My blog is my own. It’s where my thoughts — good and bad — get to live.
It’s my fears and my hopes.
It’s my mind-dump.
As I said yesterday — and I’ll say again now — I’m very jealous of people my age who have grandchildren. Or even great-grandchildren.
Why?
Because I need something to look forward to.
Something deeply natural — a million-year-old survival instinct.
A grandchild or two.
Recently I’ve noticed that many fellow travellers like me, or their lovely wives and partners, often mention their grandchildren with such ease, such lightness. It seems to me that grandkids are a big part of what lifts their spirits and keeps the darkness at bay.
I’m jealous. And the more I think about it, the more I feel (selfishly perhaps) that it’s something missing from my own arsenal of healing and coping tools.
Of course, if you do have grandchildren, you probably haven’t realised until now what it might feel like not to.
To feel unfulfilled. To feel like your existence might only echo for one generation.
I know I should stop digging — someone please take this metaphorical spade from my hands and tell me to get a grip.
But I can’t help how I feel.
This blog — this space — is where I can be honest with myself.
My counselling homework is still sitting, waiting, unanswered.
“How do I feel?”
Well… maybe this is the answer.
Maybe I feel like a failure of a dad.
Maybe I feel like my cancer has scared off my intelligent, educated sons — who now think my shitty genes aren’t worth passing on.
Oversimplified? Yes.
Bitter and twisted? A bit, yes.
Especially with these BRCA2 and CHEK2 mutations staring back at me.
Risk factors. Time bombs. Probably responsible for this very cancer I’m now trying to manage.
But I refuse to be defined by mutant genes.
I’m a normal, simple, traditional man.
A bloke who, frankly, was always likely to get cancer — just like so many men my age in the UK.
Life doesn’t come with guarantees.
You make your own life.
You make your own choices.
We all dream the same dreams.
And yes — “babies” is one of the most common dreams of all.
We all suffer, eventually, with whatever life throws at us.
I got cancer. But that doesn’t mean my whole bloodline needs to be discarded.
In this age of science, tests and checks can uncover risks — if people choose to take them.
But unlike me, they might find those risks in time.
Not like me…
Not finding out until it was too late.
So no, I won’t apologise for feeling this way.
I’m deeply sad.
But I also understand: my children’s life choices are their own.
I’ve known my eldest son’s views on fatherhood long before cancer reared its head.
I’m not saying anyone should change course.
I’m just sad that I might never meet the next generation of Mr or Mrs U’s.
This blog is my space.
My thoughts — good, bad, sometimes unreasonable.
Thoughts that take up massive amounts of mind-space behind the brave face I slap on each morning.
This cancer devastates more than just the body.
It steals space in your mind.
It crowds in with unresolved worries and ghosts of the future.
My mind is bursting with frustration.
Future plans that don’t involve me.
And yet, I love and cherish My Darling so much that I can sometimes rise above it — above the mental logjam — and smile a real smile.
She always tells me to “turn that smile upside-down.”
But my natural leaning is to be thoughtful. And yes… sad.
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Have I now answered my homework?
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I’m still on the bus.
At least it’s not a black one.
Later, I’ll count my blessings. I’ll cheer up before My Darling comes down for her morning kiss and hug.
I’d better feed Mr V. He’s ready to give me a kiss and a hug too - hopefully.
I am blessed.
