During Dying Matters Awareness Week (6th to 12th May), Emma Cooper explains why having those difficult conversations are so important…
These days, we are bombarded by ways to stay positive and ways to be happy. But, as I teach my undergraduate psychology students, negative emotions like grief, stress and sadness, are a normal part of life. Coping isn’t ignoring them; coping is finding ways to manage them.
It’s important for people to acknowledge that they are allowed to be sad and have conversations about that. And though this is something I have lectured on for several years, it is now something I have personal experience of too.
I was working from home, alone, on the day I found out my mum was going to die. It felt like I’d been hit by a freight train.
It was my dad, John, who had to make the call to share the news. Doctors had found a mass on Mum’s brain the size of a golf ball and they believed it was a glioblastoma (GBM). I didn’t need to hear anymore. I knew what that meant.
Six years earlier, I’d witnessed my best friend’s dad receive the same diagnosis, and knew this was a disease that comes with a devastating prognosis and no hope of a cure.
My mum, Anne, underwent surgery in September 2021 to remove as much of her tumour as possible, which confirmed she had a GBM in her frontal cortex and 14 to 16 months left to live. I couldn’t imagine a world where my strong, energetic mum didn’t exist. People tried to share words of hope: “She’s a fighter, she’ll get through this.” I appreciated that they were trying to be positive, but that was hard to hear. No one wanted to say, “Sorry your mum is dying”, but that was the reality of the situation.
As a family, we’ve always been very practical, so instead of a miracle, my hopes were for good quality time with Mum, Dad and my sister Laura. And though I knew she was scared, Mum felt the same.
“Let’s make the most of the time we have,” she said.
Mum could no longer fly so Dad traded in his car for an estate and they set off on an adventure, visiting the most northerly, easterly, westerly and southerly points of the UK.
One year after her diagnosis, Mum booked us a big family holiday to Port Lympne Safari Park in Kent. “Dad’s paying. No expense spared!” she said.
I watched her marching around, pushing my daughter Lola, then aged two, in her buggy, doing her hair and playing games – all the things I knew she wanted to do as Lola’s Grannie.
Having studied the brain as part of my doctorate of psychological research, I understood how the tumour would affect Mum. But knowing what to expect didn’t make it any easier.
Though she was, thankfully, fairly well for the most part, the disease was stealing parts of Mum. The glue of the family, who organised everything and looked after us all, she couldn’t remember how to cook her favourite meal or manage the supermarket shop. It was a living grief – grieving the moments that had changed, the parts of Mum that had slipped away even though she was physically still there.
Two months after our holiday, Mum began to deteriorate quickly and scans showed regrowth of her tumour.
There were days when the enormity of what lay ahead would hit me. How would I cope when the worst happened? How could I manage to carry on without Mum? Anticipating that grief was overwhelming.
So I began to see a grief counsellor. It gave me a space to feel all the emotions that were coursing through me and not worry about who I was talking to or what I was saying.
My husband Joe, family and friends rallied round and, when I couldn’t face seeing people or speaking on the phone, it was those regular texts to check if I was ok that meant so much.
Mum slipped away peacefully on 20th January 2023, aged 64, 16 months since her diagnosis. It was surreal and very, very sad. The thing that we’d dreaded for so long had happened and somehow, we survived it.
Afterwards, I was clear with myself: you are allowed to grieve. I had good days and bad days. Joe was incredibly supportive, taking care of Lola and our home when I couldn’t.
Being allowed to acknowledge my grief made it more manageable and I discovered hobbies of mine were useful coping techniques, like running and crochet. But as the one-year anniversary of Mum’s death approached, I found myself feeling overwhelmed, so I went back to counselling and explained to my colleagues that I might need some time off, which they were very supportive about.
Grief is different for everyone. There is no right or wrong way to grieve but it’s important to talk about it, to let people know how you are feeling and what you need, to normalise it.
Being open and honest and having these difficult conversations helps everyone in the long run, because death and grief is something that comes to us all.
Emma is posting about her journey on Instagram @dr_emmaclaire
Emma is taking part in our 200k in May Your Way challenge to raise money to help find a cure for all brain tumours. To donate please visit: https://www.justgiving.com/fundraising/EmmaClaire1711991598122
If you or someone you know has been affected by a brain tumour, our sister charity brainstrust offers support and advice 24/7, including coping with end-of-life care and bereavement. Please visit https://brainstrust.org.uk/
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