Post 182: Recovery in Harmony, Advocacy in Tatters

10 minute read time.
Post 182: Recovery in Harmony, Advocacy in Tatters

Post 182: Recovery in Harmony, Advocacy in Tatters

Crunchy Nut are way too nice,

One bowl’s good — better is twice.

My appetite is here to stay,

And teeth are into fast decay.

———

Update:

Vital signs: good

Weight: increasing

Bowels: sticky but moving

Pain: gone away

Confidence: rising

Fitness: increasing

Worries: occasionally stormy

———

Starting with the end of the day, this was a Monday full of care, consideration, and a midnight snack.

It was about 11:30 p.m. when I got out of my medical bed of comfort and assistance. With the landing lights off, it was the darkest hallway ever. Normally, we leave lights on all over the house (because we’re lazy), but tonight there was no such help to find my chair-lift. Rather than fall down the stairs in the dark, I switched the lights on — which of course made me want to explain myself to my Darling, already in bed watching some catch-up TV in the marital bedroom.

I pushed her door open quietly, in case she was sound, and found her awake and smiling at me.

With total embarrassment in my voice — which she must have picked up on — I said, “Sorry to wake you. I’m going downstairs to sort out my notebook notes from earlier…” and, with even more guilt written across my face, “and… get a bowl of Crunchy Nut cornflakes.”

With that admission, she laughed and nodded her head in approval, so I disappeared pronto, my taste buds watering.

I did indeed sort out my notes and had a massive bowl of blue-top-filled flakes, then a marmalade sandwich, then a huge dark chocolate mallow Tunnock’s. It was like I was a schoolboy again with a bottomless stomach and a need for sugar fulfilment.

Needless to say, it felt wrong — but oh, how it felt right too.

Mr U has a new dietary issue, all because of a box of corn. Yummy.

———

The weekend’s ups were still cheering my cockles when I rose for the pills and potions this morning, but there was work to be done and I was bracing myself for all of it. I wasn’t in a funk yet, but I could feel a fire building in my belly about medical intervention — and it wasn’t anything to do with Kellogg’s.

Mr Vicious and my daily morning cuddle have not been mentioned lately, for which I’m sorry. He’s been a dear kitty-cat, and the drop in daylight is giving him the signs — a new thick coat of many stripes, and an additional need for a lap to lie on in mock appreciation. I oblige his every whim like I’m his best friend, but really it’s cupboard-love. And it keeps him from tripping up my Darling, which is no bad thing — the other day’s scream was a near miss in the kitchen that aggravated her sciatica and left her in a panic and pain.

Anyway — the first job, once my Darling woke, was to head off somewhere, anywhere, to get two 8-inch cake tins for the baking, later on today.

Last night she’d hunted “high and low” (Morton Harket — A-ha) for the old tins, to no avail. “We need new ones,” she said.

But in my quest for medical data and a replacement sharps bin for my glass syringes, I was going to first swing by the hospital’s day ward for that and the PSA score from the bloods three weeks ago.

We headed out smartly, and I was gaining strength of purpose every mile I drove. In fact, I was getting excitedly braced for the news. I parked up, and we headed in — but before we got into the huge hospital foyer my Darling said she was off to see her work-mate C for a catch-up while I sorted myself out. Fabulous — two birds with one stone.

The day ward was its usual busy self. The kindly receptionist dealt with me on the sharps bin immediately but deferred the PSA to a nurse hiding behind a screen beside her desk.

“This might be a while”, “she’s on the phone,” the kindly lady whispered.

“I’m in no rush,” I said. “I’ll sit here and wait.” Which I did.

About ten minutes later — and several phone calls completed to happy or anxious patients — I was called for. I wondered if they’d fob me off like oncology did last Thursday. I stood waiting while computer keys clacked after the usual DoB and other verbal answers. I was holding my breath; this was important.

“342,” she said.

“3… 42?” I replied.

“Yes,” “342”.

“Oh…

that’s not good.

Thank you, that’s all I wanted. Goodbye.”

I pulled away from the hidden nurse, nodded to the kindly lady, and left the ward in relative shock and desperation.

This is where, in all honesty, I had another of those wobbly moments. The long corridor back to the entrance foyer looked even longer. I sat down on an empty bench just outside the ward, the phone in my hand a hotspot of attention. Rather than tell my Darling right away, I needed to put the overwhelming sinking feeling on hold. So I started to text my youngest — explaining my mood and reaction to the PSA drop of a measly ten points and what it meant to me.

He doesn’t mind me shooting my mouth off to him; he’s my muse.

I sent the very long, upset text to its digital destination, then focused on something else — the Mac forum, a newbie I could help. Helping them helped me. It lifted my mood dramatically, distracted me for an instant.

A call from my Darling got me off the bench and back down the long corridor to the busy foyer. I met her at the car, and as we jumped in, I told her, “I’ve got a new sharps bin — let’s get to Sainsbury’s for the cake tins.”

I was hiding the big news, but the first thing she asked was, “What’s your PSA?” “Did they say?”

I started the engine and edged out of the car park. “Three forty-two,” I said. “Down ten — just ten.”

By the time we reached the shops, I was in meltdown. My Darling stayed in control but had mixed thoughts about the news, but was equally worried about the funk I had slipped into.

“Do you want anything?” she asked sweetly.

“Chocolate,” I said — just a bit of chocolate.

Back home, the cake preparations took over any selfish thoughts I had. As the Pyrex bowls filled with ingredients, I was meant to line the tins — but that was shelved for today due to circumstances out of my control (more to do with an overnight brandy infusion for the fruit mix — not me). So I made myself scarce.

I slipped outside into the fresh air and decided to carry out a short experiment — testing my strength. A bit of weeding in the shale raised beds in the back garden. Obviously, my Darling would not sanction such foolish endeavour, but as she was knee-deep in currants and sultanas, she was unavailable for comment.

Quickly on my knees, yanking a few thistles out of their seats, I channelled my PSA anger and frustration into the task — pulling up a bucketful of weeds, then another. But that was it; my legs told me to stop.

I snuck back in, praised the wondrous smells in the kitchen just as she finished covering her work for tomorrow’s baking, and we moved into lunch mode.

Side by side we made lunch and, without a word about weeding, sat, ate and recharged. I did get my chocolate, if you’re wondering — a massive sharing Oreo bar as my gift of good cheer. A few chunks were a lunchtime delight.

Subdued but full up, we lounged by the TV and fell into quiet distraction — K-drama, real-life cop shows, sudoku, and for me a bit of Kindle — all keeping the elephant in the room at bay. The PSA.

Until…

My mobile rang. And lo and behold, it was Specialist Cancer Nurse T calling on behalf of oncology as a temporary fix for my very own contact-ability. Oh my, what a break — how I needed to talk me just now.

We went through recent history, then my worries. She realised things had slipped and arrangements should already have been in place. She was kind, apologetic, and suddenly very enthusiastic to get my plan back on track.

“I can get the CT and bone scan approved,” she said, “but not the whole-body MRI — only Dr S can order that. But get a blood test now, and I’ll look at it this week. Then book another a couple of days before your powwow in November with Dr S.”

I thanked her, put the phone down, emailed the GP surgery to book my bloods, and settled back down to TV and chocolate.

My self-advocacy’s done — that’s all I wanted. I’d worried I’d fallen through the cracks again, and I had.

I keep saying this to my Darling: I have the worst luck with oncology. It’s always like walking in treacle. So frustrating. So debilitating. Why me?

———

My goddaughter — who ran the half-marathon for Prostate Cancer — completed her run in style. All the hard graft she’d put in made her day special, and I’m so very proud of her. She sent photos, and I’ve never seen such a big smile. What a star — one among thousands raising money for the cause.

As I close this missive, I’ll admit I feared the PSA wouldn’t be good — it was just  a gut feeling, but realistically the chemo has set me back in some ways.

What I’d hoped for was a return to the number I was at when chemo started in April. Is that too much to ask?

PSA 133 was my starting number.

PSA 342 is my ending number.

Yes, there are many other factors to focus on — reasons not to let one damning piece of data define the story. But it’s my body, my story, my PSA, my worries…

I’m not happy.

Thank you for reading.

I’ll get into trouble with my Darling about how tired I was after the weeding, but the shale looks a bit better. It was worth it.

I feel lighter knowing the scans will be ready for the powwow in four weeks’ time. I want to know what’s inside.

It’s my Darling’s 60th birthday in less than two weeks — and the anniversary of our vow renewal the same day — so I’m happy to be gradually feeling a little more excited every day about the curry night celebration and a senior railcard for my Darlings discounted travel. Where did the time go?

Bring on the curry.

Anonymous
  • More positives there than negatives - keep going - I know it's hard when your PSA keeps going up from personal experience but I do trust my team to sort it out, and as you know - everything takes time!!!

    As the saying goes -"there's more tools in the toolbox".

    Best wishes - Brian.