23/12/2024
I am going to share a post from a wonderful human who has been given a terminal diagnosis. They know they are walking towards their final journey. I couldn't share the post to this page so I am copying and pasting as this post spoke so much to me. I have always noticed that people avoid mentioning death at all, even when talking to close loved ones. It can be very difficult to find words and express your heart. This post might help anyone who is around someone that has been given a terminal diagnosis.
Credit: @ walking the bone road
Wonderings
Why is talking about mortality so difficult?
Since my diagnosis, more than a few friends have said they don't know what to say to me, or even how to communicate with me.
It's odd to take in, that to them, I'm somehow different, yet to me, I'm just the same old me. All that's changed is a doctor has put a label on me.
Our culture hides illness and death away, it is medicalised, sanitised, hidden behind curtains and hushed voices. It's not so long ago that cancer patients were often not told their diagnosis, presumably to protect them, in case the news broke them? I'm pretty sure most of those folk knew, and being unable to openly talk about it must have been terribly isolating. I remember my grandmother mouthing silently that someone had, you know, cancer. Like it was a dirty word or even giving it voice would bring damnation.
Today, I think that things have changed somewhat. I do hope so for half of us will have a cancer diagnosis at some point in our lives. Whilst I hate the pink-wash that breast cancer gets, there's no doubt that this and other campaigns have made cancer a less taboo subject.
That is, until it's incurable. When we can't fight like warriors, pink beribboned warriors, that's when conversation dries up.
I remember when I was first diagnosed in 2018, the main thing I was scared of was it killing me. But each time I voiced this, even to my nearest and dearest, it wasn't taken seriously. I was told so many times to not think about that, it wouldn't happen to me. So I buried it tight in my chest, like a bitter secret, this fear of dying. The fear I had to protect everyone from. It's a lonely place, holding that alone.
And yet, I'm guilty of falling into the same trap. I visited a friend the week before she died. Everyone in the room knew that the end was near, yet we talked of everything BUT that. The big, fearsome elephant in the room remained unnamed. To this day, I regret my cowardice. I didn't want to be the one to say anything to upset her. But I'm sure she was open to talking about dying, maybe even hoping we would start the conversation, I'll never know.
This experience was one of the reasons I began training as a death doula. We need to rediscover how we talk about the uncomfortable truth- we are all walking towards death. No one gets out of this alive!
So, here are a few gentle pointers, all personal to me, but maybe it'll help you feel a bit more comfortable around folk like me:
1- I'm still me, you're still you. That hasn't changed. However we interacted before, we can still. Telling jokes, talking rubbish, asking questions, it's all good.
2- Don't be afraid of the D word. I guarantee we have been thinking about it endlessly, so nothing you say will come as a shock. Let's bring back the D words!
3- How are you? is BIG. I struggle to answer that one. How are you today? What are you feeling today? These are so much easier to answer.
4- Don't think you have to have the right words. Spoiler alert- there are no right words, no magic words. Nothing will make this ok. It isn't OK. But knowing you have reached out with whatever words cone out, that means the world.
5- if you really want to develop your difficult conversation skills, for all those tricky situations in life, I highly recommend these two books:
Being rock, by Mandy Preece. This book will help you communicate better with your family, partner and even us awkward stage 4ers. Mandy is a wonderful, caring soul midwife and teacher and I have learnt so much from her.
Listen, by Kathryn Mannix. Kathryn has worked in palliative care for decades, and she shares many examples of how effective, thoughtful communication can be life changing.
So, if you've made it this far, thank you. Is this too long a ramble?
None of this is said to blame or shame or whatever. I know this stuff is tough. But part of my "mission" is to open up these conversations.
With love
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