A Staffordshire man who is being treated for an incurable brain tumour, is sharing his story to raise awareness of the disease.
Matt Harvey, from Great Haywood near Stafford, is opening up about his terrifying ordeal.
It began when he was suffering with headaches, sickness and poor vision in December 2013.
A year later, a routine eye test at Specsavers resulted in him being sent to hospital for rapid diagnostic tests, which revealed a brain tumour.
Matt, 33, who coaches the under-12s team at Milford Athletic Dynamos, was diagnosed with a grade 2 diffuse anaplastic astrocytoma.
He was told that they are initially slow-growing but have a tendency to progress to a higher grade over time, usually over a number of years.
He underwent his first brain surgery, to debulk the tumour, in February 2014 at University Hospital Birmingham (UHB).
Matt is married to Cheryl, an administrative assistant. Together they have Riley, aged eleven, and nine-year-old Brooke.
Matt added: “Cheryl and I were in our mid-twenties at the time of my first brain surgery and the kids were only young.
“It was a difficult time for all of us, especially afterwards when I was put on heavy-duty steroids to reduce and prevent inflammation inside my brain. I put a lot of weight on and my personality changed. Cheryl was really worried about me.”
By 2017 Matt was being monitored with annual MRI scans and life was beginning to return to normal, when, to his dismay, medics found the tumour had grown back and was now a grade 3 glial tumour.
He said: “I knew this was a possibility but it was still a shock after three years of clear scans. We had a holiday booked to Spain that April, but all plans had to be put on hold as I was back at UHB for my second craniotomy on 26 April 2017.
This time around Matt’s neurosurgeon, Mr Ughratdar, performed an eight-hour-long awake craniotomy.
The operation involved being woken up from general anaesthetic and asked to perform simple tasks such as speaking, moving his hands and feet, and other basic neurological tests.
Through sophisticated scanning techniques that happened live during the operation, the surgeon could see which parts of the brain are controlling these vital functions, enabling him to avoid those areas.
Matt said: “I try to take everything in my stride but going into surgery knowing you’re going to be woken up part way through is terrifying. Happily, it went really well and the next day, other than feeling a bit numb, I was up and about and beginning to recover well.”
“After the surgery, however, there wasn’t much let-up as I faced six weeks of radiotherapy and 12 months of chemotherapy. The treatment made me feel sick and I lost my hair – I was gutted about that; I liked my hair!”
The first few scans following chemotherapy showed that the tumour was stable. Last Christmas, however, the Harvey family was given more bad news.
The tumour had grown back and this time it was grade 4 and he would need another awake craniotomy, this time at the Royal Stoke University Hospital in Hartshill.
Matt said: “Once again, we had a holiday booked for the end of April but this time I was determined not to let the tumour interfere with our family break, so the operation was put off until 10 June 2019.
“I felt more apprehensive going in for awake surgery this time, knowing what to expect. It was tougher than the last one as I had to lie on my side. The side effects were worse too; I still can’t feel my legs properly and suffer from tingling sensations, like pins and needles.
“On the plus side, my neurosurgeon Ms Albanese, said the surgery went really well; she succeeded in removing the majority of the tumour.”
Matt is now on another course of chemotherapy, to treat the residual tumour. He also had healthy tissue removed and sent to UHB, where he is part of a clinical trial.
Having been forced to give up his work as a roofer, due to the physical nature of the role, he now works as a team leader at Truss Form in Seighford.
He is also working with the Brain Tumour Research charity to raise awareness of the biggest cancer killer of children and adults under the age of 40.
Matt said: “I was shocked to discover that brain tumours kill more children and adults under the age of 40 than any other cancer, yet have historically received just 1% of the national spend on cancer research.
“I still go to footy training with Riley, even though I can’t do as much as I used to physically. Brooke has been upset at school sometimes, now she’s at an age where she understands I’m poorly and have to go into hospital for treatment.
“But on the whole the kids and Cheryl have been great support and we enjoy a happy home together. Life is good. I’m feeling positive and try to carry on as normal.”
Brain Tumour Research funds sustainable research at dedicated Centres of Excellence in the UK, including its centre at the University of Portsmouth; it also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure.
The charity is calling for an annual spend of £35m in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
Michael Thelwall, head of community fundraising at Brain Tumour Research, said: “We are very grateful for Matt’s support and thank him for helping us to raise awareness.
"Less than 20% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers; we cannot allow this desperate situation to continue.”
To donate to Brain Tumour Research go to https://www.