I’m one of those people doctors love to hate.
Oh come on. Who doesn’t love a good research?
When I go and see the doctor. Chances are I’ll have already self diagnosed the problem. Cross referenced the NICE guidelines against the rest of the world’s protocols. Prescribed my treatment of choice. And identified any contraindications.
Hell. I’ll have even offered myself this information in a wide choice of foreign languages. I’m that thorough.
What can I say? I like to be informed. Others prefer the term control freak. Meh
Either way. You can just imagine how popular I was with my mum’s oncologist.
At the first appointment he’d told us that Mum’s cancer was ‘pebble-dashed’ across both her lungs. It was inoperable. Incurable. Said she had 12 months left in her. Maybe 18. If she was lucky. Yes. Lucky.
It’s an incredibly difficult thing to hear. To understand. To believe even.
I’m not suggesting I thought he was wrong or anything…
But. He was just one human being. With badly bitten nails at that.
If it was your Mum. Brother. Wife. You’d want to be sure wouldn’t you?
Sure of what options were and weren’t available.
That no stone had been left unturned.
I left the oncologist’s office that day with a mission. A mission to turn as many stones as I could. This lady was for turning.
I scoured the internet for information. Unearthed case studies from around the world. Joined medical forums. I read everything I could find that was connected to Mum’s type of cancer.
It was like I was studying for my own private doctorate. My MmD. Doctor of Mum.
Everywhere I went. I read. On the commute. Over lunch. In the bath. My bedside table disappeared under a pile of books. It made for some pretty excruciating reading. And yes. There is a lot of crap to be discarded out there. Even from so-called experts. As well as a hell of a lot of outdated and unhelpful statistics. Terms. Vocabulary. But that’s another post.
Everything of worth got scribbled down in my Notebook. And that’s not a typo. It does deserve a capital letter. It was that important.
To me, that Notebook was like the Magna Carta. It contained everything. Every morsel of useful information. Every question. Possibility. Observation. Random thought. It went everywhere with me. Like Bruce Wayne with the batmobile. Aladdin with his lamp. Or Simon Cowell and those T-shirts.
At early appointments with the oncologist the Notebook would come out. Locked and loaded. Fully charged with questions. About other treatments. Radiofrequency ablation. Anti-estrogen therapy. Whether the biopsy sample had been tested for particular genetic mutations. Specific markers.
I didn’t do it in a pushy way. My priority wasn’t to win some power trip. It was to make sure Mum had the best treatment possible. I was all too aware that pissing off the oncologist by acting like Cruella de Vil wasn’t necessarily the right way of doing that.
But I also didn’t want to have any regrets down the line. To think that we hadn’t looked at all possibilities. Be left wondering if we could have tried something else.
I just wanted to be re-assured he’d considered other options.
But at every appointment. He shot us down.
He decided because I was researching. And showing hope. We must be in denial. And that it was his job to ram home the reality.
Every time I asked anything he felt it necessary to re-iterate the terminal prognosis. Sometimes even aggressively.
‘You do realise it’s inoperable and incurable, don’t you?’
As if he thought we’d forgotten. Oh thanks for reminding us. Funnily enough, it had slipped our minds.
Even with the most innocent of questions. Like how her blood results were looking. Or her liver function.
It was unnecessarily upsetting to hear. To keep hearing. And even more upsetting for Mum. I felt terribly guilty. I was supposed to be at those appointments to make things better. Not worse.
I was aware too this wasn’t my diagnosis. It was Mum’s. Her illness. To be handled how she wanted. It wasn’t for me to invade her experience with my researching needs. It was important for her to come to terms with the situation independently of me and my obsession with stone-turning.
I eased off after the initial appointments. The Notebook was still as important. I was still questioning. Researching. But I didn’t want to put Mum through it every time. She dreaded those appointments enough already. Worried about what he would tell her this time. What new horror lay waiting for her behind that door. She just wanted to get in and out of those appointments. As quickly and as unscathed as possible. Resume service as normal. Concentrate on being her. Which meant staying active. Upbeat. Well.
She hated the constant reminders. Most of all the letters from the hospital. Copies of the oncologist’s correspondence to her GP. Detailing the cancer’s progress. Its achievements. Like one of those irritating round-robin letters at Christmas. She asked him to stop including her. More than once she had to ask. He looked bemused at this request. As if to say what a strange family we were. A family in denial.
Mum joked about being in denial herself. But she wasn’t.
In fact she went to great lengths to have everything ready for us. On several occasions she’d walk me through it. In her usual ultra-organised way. Where her will was. Her bank statements. The insurance paperwork for the funeral. It was me that didn’t want to hear it. To think about the time when I’d have to re-trace those steps. Without her. I just wanted it to stop. But I knew it was important to her. Have everything in order.
One time she sat me down and emptied a whole box of old jewellery out in front of us. Nothing fancy or massively valuable. Just all the various bits and pieces that had been saved over the years. Like two girls up-turning their rock-pool buckets onto the sand and sifting through their catch. We picked out item by item. As she explained which rings were hers. Which were her mum’s. The other various artefacts that had been passed down within her family. The stories behind them.
So. No. She wasn’t in denial. She just wanted to concentrate on being well. On what she had now. Her life. Her positivity.
Why was it so difficult for the oncologist to appreciate this? To respect the way she wished to approach it? By choosing to concentrate on normality. Just as I approached it by choosing to research.
And is it really that bad to have hope anyway? Isn’t that part of what makes us human?
At what point are we meant to give up? At diagnosis maybe. Perhaps during the final hours. Or is it somewhere in between?
Maybe some people would say we were just optimistic.
I don’t know. And at what point does optimism turn into denial?
Likewise – when does a realist become a pessimist?
As individuals we all have our own strengths. Passions. Preferences. Needs. It’s respected that we each have our own ways in which we choose to live our lives.
So why do some members of the medical profession not extend this respect to us when we’re ill?
Surely every patient – every family – has the right to be able to deal with illness in the way they choose. So why is a cancer diagnosis any different?
Oncologists need to start treating the individuals. Not the cancer.
Maybe I am a control freak. All that researching. To me though it’s so not so much about control. But being able to do things your way. I’ve always researched. That’s my thing. Just as Mum had always wanted to concentrate on the good in her life.Why would we stop when it came to this?
So no. I don’t think Mum’s oncologist liked me all that much.
It’s okay. I wasn’t his biggest fan either.
Subscribe below for future posts by email: