Post 143: A quiet meeting of minds.

5 minute read time.
Post 143: A quiet meeting of minds.

Post 143: A quiet meeting of minds.

Dr S inquired, and I sat, listened, and taught too.

———

I’ll start at the end and then fill out the gaps.

As I slowly pushed up out of the chair to end this meeting, and to end the discussion about me, everyone took the cue and rose up too. I whispered my goodbye without looking at anyone and turned for the door. I didn’t shake hands or look anyone in the eye.

I was all alone in my head, and I bet I looked a sight to the mass of waiting-room patients — this tall man with a faraway look, tear-stained cheeks, and reddened eyes leaving with his head bowed, leading his son and wife away from the terror-gation room, aiming for a dignified exit.

Later, my Darling and my youngest told me that Dr S was in tears as I left the room.

That sums up the feelings of the meeting succinctly.

———

I drove to the town hospital where Dr S holds her clinics, to keep my mind on something other than the meeting. I didn’t take any oral morphine today.

We were running to time and sat in the empty waiting room.

“What’s the duration of today’s meeting?” I asked the receptionist nurse.

She looked up and smiled, “As long as it takes. And we are running a little bit late, as you might expect.”

I nodded in acknowledgment and settled in the seats while, later on, other patients wandered in for their own “delayed” meetings.

“Mr U. Mr U,” the nurse called. We three got up, and I led the way to the open door where Dr S stood, watching for any signs of trauma, no doubt. This was only the second time we’d met, and I sat down barely recalling her face or voice. I will do next time.

Dr S asked me to stand up so she could check my spine and ribs after a good Q&A about the last few weeks’ problems and all the drug dose adjustments. That done, it was time for her to ask the million-dollar question…

“So,” she said, “how are you?”

It felt like she dreaded asking that essential, open-ended question. I read in her body language that she was bracing for me to give her a hard time.

But she was soon under a very different impression as I started to unwrap my worries and thoughts — what I’m feeling physically, how I’m coping mentally, what I think of Carboplatin, where I think I’m heading, and what’s likely to happen next.

As I spoke, clearly and concisely, in an amateur but analytical way, my voice became quieter. I felt like everyone — Dr S, my Darling, my youngest — was listening intently, taken aback by thoughts that were not just reasonable but sympathetic to both sides: options and hopes alongside the practical problems and physical limitations.

The time flew. Dr S and Mr U became very able to understand each other.

I had got everything I wanted to say said.

As for the answers…

they were not so easy. Any timeline for treatments was deferred to the winds of time. But Docetaxel would be the next chemotherapy — in the future, after we decided what to do with Carboplatin.

And this is where I was asked what I wanted to do with Carboplatin. After Dr S explained the metrics — that it was doing something, and that with so few options she wanted to squeeze out what benefit it could — she leaned towards continuing the fifth and sixth cycles.

This is where I sat and considered the whole issue. My underwhelming sense of the usefulness of the treatment. The mantra I repeat to myself at these moments: I’m not the doctor. I’m not the one who decides what and when.

So nobody spoke, and I was left pondering the whole situation and its impact - tearfully. Then, in a flash of inspiration, I whispered, straight off the top of my head, “If the PSA in tomorrow’s blood test is up from 486, Carboplatin is cancelled. But if it’s down (as it ought to be), we continue with the next cycle.”

And with that, the thorny question was answered — clearly, and to the agreement of everyone in the room.

Fin.

———

The rest of the day was a bit of a blur, to be honest. In fact, I can’t really digest the meeting’s findings — not that there were many.

All I know is that my incurable prostate cancer is progressively shrinking my world.

Earlier this year, in New York, at the top of the Empire State Building, my world was like anyone’s: exciting and immense.

But since then, it has shrunk.

Yesterday, it shrunk again — down to the size of this island we live on.

———

I’m realistic, but disappointed.

I’m looking for answers that nobody wants to give me.

Not having timelines means I could miss an opportunity to “get out before more cancerous shite piles up on me again.”

I want to enjoy what’s left of my life in a way that feels “normal.” But with increasing doses of drugs just to survive, I wonder if my “normal” is already pretty well compromised.

———

So the blood test is my conductor. It will decide if I stay or leave the bus.

I’ll be okay - either way.

I dearly want a break from this monster inside me that rules my life.

The Docetaxel bus is in sight. It will stop for me soon enough.

I’m calm. I have K-dramas and sudokus for daily distractions.

Mr U survives as best he can.

Thank you, readers, for your continuing support. Your kind wishes are very welcome and brighten up my dull days. Heart

Anonymous
  • Thank you for all your personal insight about you. At the centre of the eye in the storm. We have our loved ones around but how lonely it can be. So strong, so on point and relentlessly focussed on the way forward

  • I thank you firstly for reading and commenting. It’s the responses that empower me the most. My blog is therapy for me, first and foremost. I have a period of the day, in fact usually in the wee hours, when I look back on the previous day and start writing a line or two mainly to comfort me and to put things into perspective. It’s too easy to forget the positives so I try to balance the day.

    I’m a reflective person with no interest in writing at all, but this blog has taught me much about how you can get joy out of putting one word after another and getting things off your chest that might, just might help others in a similar situation.

    The one thing I feel was always essential from the start was getting out my feelings, and being brutally honest. After all this is anonymous.

    It’s the honesty that helps me the most.

    I find it best to start the new day fresh and to forgive and forget yesterday. I used to get tangled up with the far future to never be living in the today. Now I live more in the today and hope for tomorrow.

    I have really bad days a cry a lot, I’m like anyone else. I’m heart broken that my particular illness is incurable, I’m jealous of everyone who has grandchildren (as a blessing and distraction) at times I can only hear my little voice inside asking “Why me”? But if I let myself be selfish for a while I soon pinch myself and remember to be grateful for living in the 2020’s where the treatments that I’m given are totally amazing and everyone is trying their best to help me.

    My strength comes from the love of the people around me, especially my Darling. She’s stronger than me. She’s suffering more than me. I’m in awe of what you ladies go through with all of us prostate travellers.

    I think that’s it, it’s as simple as remembering that you are amazing, you can do more than you think you can.

    To try is to be alive and more normal.

    My daily task is to try to be more normal.