Why it's important to talk about death and dying
After having first being diagnosed with a brain tumour aged 19, Ashleigh died following a relapse 7 years later. His mum Amanda shared his story with us, and how talking to her son about death and dying gave her some much needed reassurance. On the other hand, she wishes she’d been more transparent with his siblings about what was happening with Ashleigh. Since he died, Amanda and the family have raised money for Teenage Cancer Trust through online challenges and Amanda’s school.
Ashleigh’s diagnosis
He was just 19 when he was told he had a tumour the size of a golf ball on his cerebellum. He was diagnosed with a one in a million Medulloblastoma.
When you hear about people having brain tumours, they almost always present with the same symptoms such as headaches, seizures and sickness.
Ash didn’t have any of those, except for headaches and sickness just before he was diagnosed. The sickness was because the cerebral fluid had built up and his stomach couldn’t deal with it. He’d felt unwell with colds for around nine months by that point and if we hadn’t been persistent with the doctors the tumour might not have been found. We were told if we hadn’t brought him in that weekend he would have died.
I would encourage all young people to get themselves checked out if they have persistent illnesses, or if they aren’t feeling right. Ash had been feeling poorly for coming up to a year and no-one had been doing anything about it, I think due to his age.
It probably wouldn’t have changed the outcome for Ashleigh, but it might for another young person.
Relapsing 7 years later
We were lucky the first time round, and Ash had chemotherapy and radiotherapy on the Teenage Cancer Trust unit at the Queen Elizabeth, Birmingham.
He met a girl called Sam and they moved to Warrington. He was having six-month scans and they picked up some nodules when he was 26.
They weren’t too worried at the time, and he was given Ibuprofen and told to rest from his job at Ikea. He started having reoccurring water work problems he couldn’t empty his bladder in March and April 2018.
The next scan showed that it had metastasized and was in his spine. This time round he wasn’t as lucky as he had the group 4 strain and there was nothing that could be done for him. They had started him on chemo, but that wasn’t working.
I would encourage all young people to get themselves checked out if they have persistent illnesses, or if they aren’t feeling right.
Talking about death and dying
Ash was told that he only had two weeks to live, and it was two weeks. He got married to Sam within that time. He died in his home with Sam and family around him.
He knew he was dying, and he spoke openly about what he’d like and what he wanted to happen afterwards. He told us to go with what we wanted for the funeral, but he said to make it cheap and cheerful – he wanted us to save our money. I do sometimes think: ‘Should we have done this or that at the funeral’. But because he had spoken to us about it, I feel reassured that he would’ve been happy and that helps me. I could’ve been worrying about that for years to come if we hadn’t talked about it.
He had a funeral and a cremation. It was beautiful and there were around 400 people there.
I made the mistake of not telling Ash’s siblings that he was dying as I thought they were too young to be told. His youngest sibling was just 11. I wish now that I had told them the truth as they said that they would have wanted to say goodbye.
I wish there was more advice on how to talk to children about terminal diagnosis back then. I know now that it’s ok to tell them someone is dying, it’s just about saying it in the right way.
I also wish I’d known more about the support that was available for all of us. I’ve had to cope with my own grief, my husband’s and the kids. One of my children has PTSD and severe anxiety about Ash’s death.
The Teenage Cancer Trust relationship
Teenage Cancer Trust were absolutely amazing. Ash is one of seven children and the staff at Teenage Cancer Trust supported the whole family. When Ash was first diagnosed, his youngest brother, Joshua, was only three, and the staff made sure that when we visited Ash the whole family was included. They made sure that the hospital environment was not scary. The Youth Support Coordinator was great with all of them.
Ash never stopped doing activities and that was mainly because of Teenage Cancer Trust. He went to their Find Your Sense of Tumour event. They also referred him on to other activities like the Ellen McArthur sailing trip. They miss out on so much, like going out partying or going to university, so it’s nice that they could do things like this.
We’ve met other people who were helped by Teenage Cancer Trust. We’re still friends now and are part of each other’s journeys.
When Ash was re-diagnosed, he was just outside of Teenage Cancer Trust’s age range, but they remembered us and asked if there was anything they could do. Because of the amazing care he had there the first-time round, we asked for people to donate money to the Teenage Cancer Trust unit when he passed away.
When he’d been at the unit, he said they could do with having an Xbox for the young people, so we wanted to raise money for things like that.
The year after he died, we wanted to raise money for Teenage Cancer Trust again. Because Ash liked going out, we organised a pub crawl and went round all the different pubs that he liked and raised money that way.
I also do a lot of the online fundraising events that Teenage Cancer Trust run, like the squat challenge. I work in a school, so I get everyone involved.