Melissa and Matt’s story
Watch the video: Melissa’s Story for Brain Tumour Awareness Month
Hear from Melissa as she talks about Matt’s diagnosis and how The Brain Tumour Charity and online support networks were able to help their family through this difficult time.
Before volunteering, I hadn’t met anyone else in the brain tumour community, and now I have a safe space every month where I can chat to others in a similar situation, and not feel that I have to be guarded or hold anything back.”
Melissa
Melissa and Matt Skinner were planning their wedding in early 2017 when he started having panic attacks.
Anxiety like this was unusual for Matt, so he went to his GP. His GP agreed stress around the wedding planning was the most likely cause, but did order an MRI scan, hoping to put Matt’s mind at rest.
The scan showed something of concern – enough for Matt to be called in for a second scan. But after that, events were far from straightforward. Just days later, the NHS was the victim of a cyber attack. The couple returned to the GP as planned, to find out that Matt’s scans had been lost.
Melissa, who works as a Social Media Manager for a deaf children’s charity, explains: “All the GP had a handwritten note that said, “Two lesions on the brain.”
A neurological appointment was booked at Salford Royal Hospital a few days later, but the scan still couldn’t be accessed. As Matt seemed well, with no other symptoms, they were reassured, and told they would be called back when the scans were available. Melissa said:
“We didn’t think Matt might have a brain tumour at that stage. We didn’t know what a “lesion” was. We thought, oh, it’s probably something that’s been there his whole life, you know?”
“For months, we didn’t hear from anyone. In that time, we got married. We moved on with life, and made great memories, although Matt was still having the panic attacks, but no other symptoms.
“In September, we finally got through to the neurosurgery team at Salford Royal. And they said, it looks like a tumour. We’ll scan you again and we’ll confirm it.”
Shock diagnosis
Finding out that Matt did indeed have two brain tumours – later confirmed to be glioblastomas – was “really scary”, Melissa says.
“At the time, we didn’t know what the future might look like – it was upsetting. But the main thing I remember is Matt turning to me and just saying he was sorry. Because, you know, we had just got married, and we had all these plans. And he was sorry that I was going to have to support him through this. Which is a very selfless reaction for him to have.
“But I was very practical. I thought, okay, you know, that’s what it is. Deal with it. The consultant went through a series of options: we could watch and wait, or take a biopsy and remove the tumour, and straightaway I’m like, just take it out – then we know what we’re dealing with.”
Matt has since had four surgeries. The couple have a four year old son, Cassian. After a long period of stability, one of Matt’s tumours began growing again last year, and he is currently having chemotherapy at The Christie in Manchester.
How our support helped
“I think one of the biggest things that I learned quite quickly on this journey, is that no doctor or consultant has ever told us exactly what to do. It’s always been: “We recommend this – but it’s entirely up to you.” And having that choice, about what you do with your treatment, is really overwhelming.”
Melissa
Like all families and individuals dealing with a diagnosis, Matt and Melissa suddenly needed to negotiate the world of brain tumour treatment – one they knew nothing about. Fortunately Melissa was able to access useful support from The Brain Tumour Charity. This has ranged from practical advice – our team helped her get a substantial travel insurance refund after Matt’s tumour regrowth last year – to emotional support; for example, she very much values the camaraderie that comes from working alongside her fellow Involvement Champions – other people who “get it.” Melissa explains:
“Matt has the brain tumours,and he’s dealing with that. And I’m here to support him with that. The information that I need, and the information that Matt needs, isn’t always the same.
“Sources like The Brain Tumour Charity website, having a look at the information on treatment plans, about different types of chemotherapy, about having surgery awake, or surgery asleep, has been really helpful, for us to choose the treatment plan we want.
“After his diagnosis, Matt stopped driving, but we didn’t realise that you had to send your licence back. Using the Facebook groups and the Support groups has been really useful to find this sort of information out. When Matt’s tumour changed, and we started to look at chemotherapy and radiotherapy, we used the Facebook groups to ask more questions.
“Matt’s on PCV at the moment, and with that comes a very strict set of dietary requirements. The booklet we were given by the hospital was just a generic booklet about eating while on chemotherapy. It wasn’t related to his PCV at all. And I was quite frustrated. I’ve got to cook meals to make sure he’s eating, and he’s well – but I can’t use this booklet. So I went on the Facebook group, and started asking people for recipe ideas. The groups are really helpful for practical advice. And sometimes, you’ll just want to go on there and see people being really kind to each other. It just reminds you that you’re not alone in this situation.
“I think it’s really important that The Brain Tumour Charity offer such a wide range of information and support, because there’s so many people living with a brain tumour or looking after someone with one, and it’s not going to be a “one size fits all” solution for people. So to have information, advice and support, whether that’s online, on the website, whichever way people might access it, it’s hugely important, practically and emotionally.”
Becoming an Involvement Champion
In 2023, Melissa became one of our Involvement Champions, hoping to help other families affected by brain tumours.
“I thought, I’m not a runner. I’m not going to run the marathon or take on challenge events. Where else can I put my time to make sure I’m able to support other people who are on this journey? Becoming an Involvement Champion was perfect, really.”
The role has brought varied opportunities, and unexpected emotional benefits too:
“Before volunteering, I hadn’t met anyone else in the brain tumour community, and now I have a safe space every month where I can chat to others in a similar situation, and not feel that I have to be guarded or hold anything back.
“Since starting, I’ve taken part in focus groups, fed back on projects, shared my experiences at meetings and events, but the most interesting event I have attended was a recent drop-in day at Parliament for politicians to find out more about the Charity’s National Brain Tumour Strategy petition. I was able to meet MPs, talk about my situation, and really advocate for all those impacted by brain tumours. It was an amazing experience.”
Looking forwards
Melissa admits living with Matt’s condition can sometimes be tough, and sometimes in unexpected ways.
She estimates that in the eight years since Matt’s diagnosis, the couple have spent as much as one whole year out of those eight, on surgery, appointments, and admin related to his condition.
But as a family, rather than racing to tick items off a bucket list, they do their best to make everyday life as happy as possible.
“We have a lot of hope for the future and what that looks like. We don’t live our lives ticking off a bucket list of things we must do, in case this comes back. We look at in a more practical way. For example, we can’t afford travel insurance – so we swapped the car and got a campervan. So now we go on holidays in the van across the UK, which is amazing.
“I’d love to go to Disney World. But you know, let’s not get sad about that. Let’s just reframe it and take the van for two weeks, and go on a road trip. We live in a beautiful part of the country. It’s a really nice place to be, and we just enjoy it. And any day that doesn’t have anything to do with a hospital appointment is a good day.”
Get involved
If you’re inspired by Melissa’s story and would like to volunteer, there are lots of ways you can get involved. Find out more here:
FIND SUPPORT Whether you’ve been diagnosed with a brain tumour, or it’s a family member or friend, we are here to help. Our brain tumour support covers a wide range of inclusive and accessible services for everyone affected by a brain tumour, whether it’s low or high grade, adult or child.