Post 178: Bus and Advocacy Blues.
The sun is drying my inner tears;
my life is back to hide and seek.
The bus has left me with my fears —
hopping off has left me weak.
———
I greet the day as usual, with an early plan to get my engines started with all the precision and timetable I can muster.
The fact is, I’m quite well — and should be shouting about it.
But I have an underlying worry about the unknown assailant inside me, the one that should have been put to sleep a while ago.
I need proof — that’s what I want.
I read in the forum about the worries newer and older members post, and try to help them. It’s really easy for me to be empathetic and sometimes supportive if I can; it helps me stand up and feel alive. All too often I’m just sitting drearily by the TV with Mr Vicious on my lap, downstairs, wasting my days recovering from the invisible scars of chemo.
What did it do? Do I need more? What’s the new plan? When do I get scanned?
All these questions fill my mind every day, and I’ve become itchy about the current limbo I’m in. I feel like I’m in a little boat that’s drifted away from its mooring and is heading towards deeper, darker water.
Fears. Just fears, and no facts.
Like the forum members themselves, I look for the positives — knowing all the negatives. Questions without answers.
What can I do?
———
The toaster is roasting another couple of crumpets to use against this morning’s weakish feeling — not as bad as the other day, but still there. My appetite is great though, so I’m happy to feed those legs and try again to prove it’s all in my head. It worked the other day, so I’m confident I’m getting stronger every day.
My Darling wants to pop up to town for those new statins she’s volunteered to have. After Kev’s death recently, it hasn’t fallen on deaf ears that three of her siblings have died from heart failure. So she’s on a path of healing — doing anything that might keep that family trend away from her.
I’m impressed by her attitude; it’s so positive, so good for her future.
Walking up to town in the warmth of the sun under a deep blue sky, I wonder what month it even is. It’s too warm for October, but I love it. We hold hands and chat as we go. The planned bathroom replacement is on hold — we’ll have to tell the plumber — and now there’s my Darling’s 60th birthday curry meal to nail down and sort out the numbers for. I’m looking forward to that dinner; we haven’t had a curry out for ages. It’s just family so it is going to be lovely jubley.
I say to her, as we sit down in the usual café, that I’ve been thinking hard about seaside hotels and days and nights away, but have drawn a blank for any real direction.
“In my mind,” I tell her, “I don’t want to be the cancellation king again and cause more drama with another failed break away from home.”
“All I can come up with at the moment is to go out three or four times a week for lunch or dinner somewhere. Wherever and whenever — no big plans, no big problems. What do you think?”
She agreed wholeheartedly.
“We can do that easily”, and smiled across the table in total agreement.
Although it’s a bit of a cop-out and not very adventurous, it does create interest — a positive slant on the week ahead. It’s all I can think of to do — for now.
With the diner dinner eaten, we head home with a few essentials and treats and our bellies full. The acorns are still covering the paths in places, so I’m careful not to be a big kid and kick the bigger piles just to watch them scatter. I don’t want to fall — what a baby.
I’m fighting fit when we get home, and plans to get the hoovering done are put into action across the house. I’m upstairs helping out with chores for the first time in months. I like the thought of helping my Darling, but I’ve been told to save energy for recovery, not waste it on housework; until now of course.
Still, I’m humming I Want to Break Free as I push and pull the noisy Dyson across the bedroom carpets, picking up fluff and fur. I’m glad to be useful for a change — and it didn’t kill me to do a bit of work. Ka-ching! Another feather in the cap of recovery.
With the floors clean and the machines away, we settle for a K-drama and rest a while. Then we get a text from our youngest’s fiancé — an unexpected workplace trip to South Africa at the same time as the 60th meal. She’ll be a sad no-show, obviously.
Nothing to explain, just one of those things.
But I’m instantly grumpy — very grumpy.
I start moaning about this and that and surprise myself with my raging anger. But the text was only a trigger; I realise quickly that the real problem is that I still haven’t heard anything from the oncologist. I want to know more. It’s getting late. Why can’t anyone talk to me? I’m still adrift.
My Darling realises what’s happening in my head and suggests ringing the community hospital, where a Thursday clinic is held, to push for a reply.
And as my oncologist only works Tuesday to Thursday, this needs to be done now or wait another week.
Why hadn’t I thought of that? Obvious now she’s said it.
Half an hour later, I get a call back from the wonderfully kind clinic nurse. She says all she could find out from Dr S was that “tomorrow or next week you’ll get someone filling in as a specialist cancer nurse while Nurse N is sick — and your bloods are okay.”
I couldn’t knock the info she gave me, though what I specifically want to know is my PSA and that tests are coming.
Be patient Mr U!
Thank you, Darling. Thank you, nurse.
It’s a step in the right direction, and I’m relieved.
It goes to show that this pathway I tread is not straight or easy to travel along — I stumble every day.
I’m strong.
I’m recovering.
I want to do more.
I hate this path.
I am so scared sometimes.
Without my Darling gaining all the powers I’m loosing — I don’t know where I’d be. Every day she amazes me, cares for me, puts up with me.
Self-advocacy is so energy-sapping, but essential.
It’s what unsteadies my boat and causes me to drift into deeper water.
I wish it were different.
Perhaps someone will pull me back to my jetty next week and give me a plan of action — for my healthcare.
I want to know what’s inside.
Tomorrow I’ll have Big Sis to hold on to while my Darling has a moment away from me.
Both deserve better from me — I need to grow up and be a better me in every way.
