During Dying Issues Awareness Week (6th up to 12th May), Emma Cooper explains why it's so important to have difficult conversations…
These days we are bombarded with ways to stay positive and be happy. However, as I teach my psychology students, negative emotions such as sadness, stress, and sadness are a normal part of life. Coping doesn't mean ignoring them. Coping means finding ways to manage them.
It's important for people to acknowledge that it's okay to feel sad and talk about it. This is something I have been teaching for several years, and now it is my own experience.
The day I learned that my mother would die, I was working alone at home. I felt like I had been hit by a freight train.
It was my father, John, who I had to call to tell him the news. Doctors discovered a golf ball-sized lump on the mother's brain and thought it was a glioblastoma (GBM). I didn't need to ask anymore. I knew what that meant.
Six years ago, I had witnessed my best friend's father receive the same diagnosis, and I knew this was a disease with a devastating prognosis and no chance of cure.
My mother Ann underwent surgery in September 2021 to remove as much of the tumor as possible. The results confirmed that she had GBM in her frontal lobe and that she had 14 to 16 months to live. I couldn't imagine a world without my strong and energetic mother. People wanted to share words of hope. “She's a fighter, and I'm sure she'll get through it.” I appreciated that they were trying to be positive, but it was difficult to hear that. No one wanted to say it, “I'm sorry your mother passed away.” But that was the reality of the situation.
We have always been practical as a family, so it was my wish, not a miracle, to spend quality time with my mom, dad, and sister Laura. And I knew my mom was scared, but she felt the same way.
“Let's make effective use of our limited time.” she said.
My mother could no longer fly, so my father traded his car for property and set off on an adventure to the northern, eastern, western and southern reaches of England.
A year after my diagnosis, my mum booked us a big family trip to Port Lympne Safari Park in Kent. “My father is paying for it. I'm sparing no expense!” she said.
I watched her push her then two-year-old daughter Lola in her pram, march around, do her hair, play games, all the things she wanted to do as Lola's grandma. That's what I was doing.
I had studied the brain as part of my PhD in psychology research, so I understood how the tumor affected my mother. But even knowing what was going to happen, it wasn't that easy.
Thankfully, she was doing pretty well for the most part, but the disease was taking a part of her mother away. She, the glue of her family who organized everything and took care of us all, couldn't remember how to make her favorite meals or run a supermarket. It was a living sadness. At the moment of her transformation, she was grieving the missing part of her mother, even though she was physically still there.
Two months after our vacation, my mother's condition began to deteriorate rapidly and scans showed that the tumor had regrown.
There was a day when a huge event in front of me hit me. What should I do if the worst happens? How will I survive without my mother? Anticipating that sadness was very difficult.
So I started seeing a grief counselor. It gave me the space to feel all the emotions coursing through me and not have to worry about who I was talking to or what I was saying.
My husband Joe, family and friends were there. Regular text messages to check if I was okay meant so much when I couldn't meet people or talk on the phone.
My mother passed away peacefully on the 20th.th January 2023, 64 years old, 16 months since diagnosis. It was surreal and very, very sad. What we had feared for a long time happened, but somehow we survived it.
After that, I made it clear to myself, you are allowed to grieve. There were good days and bad days. Joe was incredibly supportive and took care of Laura and her home when I couldn't.
Having my grief acknowledged made it easier for me to cope with it, and I found that my hobbies, like running and crocheting, were effective coping mechanisms. But as the first anniversary of her mother's death approached, she found herself feeling overwhelmed, went back to counseling, and explained to her colleagues that she might need some time off, and they were very supportive. .
Grief is different for everyone. There's no right or wrong way to grieve, but in order to normalize grief, it's important to talk about it and let people know how you feel and what you need.
Death and grief happen to everyone, so being open and honest and having these difficult conversations will help everyone in the long run.
Emma is taking part in the 200,000 in May Your Way challenge to raise money to find a cure for all brain tumors. To donate please go to:
If you or someone you know has a brain tumor, our sister charity Brainstrust provides support and advice 24/7, including end-of-life care and dealing with bereavement. Visit https://braintrust.org.uk/.
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