In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Gary Henson, of Park Street, a village in Hertfordshire, was diagnosed with a glioblastoma (GBM) in September 2021. For weeks he had been drifting to the right as he walked and he had been struggling to find words and recall information. The 59-year-old, who has three stepchildren and two grandchildren, underwent a biopsy and debulking surgery before having radiotherapy and chemotherapy. He then had 11 of 12 planned cycles of chemo. Gary is now using his position as customer service manager of the Atria shopping centre, in Watford, to help raise funds and awareness for Brain Tumour Research.
Gary tells his story …
Before I got sick, I had a fairly active family life. My wife, Donna, and I would often take the kids to the beach and I enjoyed playing football with them. When I was younger I also played tennis, squash and golf. I wasn’t particularly good at any but I enjoyed them all. My main interest though was in Lego building. I previously worked as an educational engagement officer for a construction company and used to take Lego into schools to do large builds.
My symptoms started about six weeks prior to my diagnosis in September 2021. I noticed I was drifting across to the right when I was walking and I was struggling to find words when I was talking. I was also struggling to recall things that were very common to me, which persists to some extent today.
“My work colleagues kept asking if I was alright as they had noticed I wasn’t participating in meetings like I used to.”
I used to be fairly vocal when I had an opinion on things. I also used to be really active within the group socially and I had started to withdraw from those sorts of situations where I didn’t feel I was able to participate in conversations.
I came home from work one weekend to find my grandson had locked himself in the bathroom using a slide bolt. Donna and my stepson, Peter, had managed to talk him out and I bought a lock we’d be able to open from the outside. Fitting it is something I could easily do and it should have only taken me 10 or 15 minutes, but when I still hadn’t managed it 45 minutes later, Donna said she thought I needed to go to the doctor.
“I’d had COVID-19 a couple of times and thought I was suffering from long COVID and old age, but my wife was insistent I make a GP appointment.”
I called first thing Monday and was given an appointment 11 days later. Donna wasn’t happy about the delay, so phoned herself and told me I had a new appointment, in 15 minutes time.
The doctor asked me to do a few tests and chatted to me a bit before informing me he was going to refer me to the stroke unit at Watford General Hospital. I got a phone call that afternoon telling me I had an appointment the following morning. I had expected to wait about a week, so this all seemed rather quick. One of my colleagues drove me to the hospital where they did MRI and CT scans.
“The doctors told me they suspected I had a tumour and kept me in for several days whilst they gave me steroids to reduce the swelling in my brain.”
After that I was transferred to the National Hospital for Neurology and Neurosurgery (NHNN) in Queen Square, London, for a biopsy and debulking surgery. This took place mid-November 2021, during which all of my visible tumour was removed. Sadly, my biopsy results led to my formal diagnosis of a glioblastoma (GBM).
“I was given a prognosis of 10-14 months and it was a huge shock to be told I might not even have a year left to live.”
I went on to have six weeks of combined radiotherapy and chemotherapy at the Mount Vernon Hospital, in Northwood. Then, after a four-week break, I started a 12 month-course of oral chemo. I didn’t do the last round in December 2022 because I was suffering with quite a few side effects.
“I was experiencing nausea, vomiting, a severe loss of balance, breathlessness and fatigue, and was finding it hard to walk very far.”
When I had a scan in January 2023, I was told there was a bit of a flare up, which they wanted to monitor. I had further scans in February and May and, although they thought my cancer was returning, they’ve since said what was showing on my scans was swelling caused by my treatment. It’s been quite a rollercoaster of a ride undergoing treatment and having the scans, but I’m feeling quite positive at the moment.
“I’ve responded well to the treatment and, health wise, I’m probably the best I’ve been since diagnosis.”
The Macmillan nurses I’ve seen have been great. They’ve been a great source of support to me throughout my treatment, explaining things to me and ensuring I’ve asked the right questions along the way. They also arranged for me to have a grant, which was very much appreciated because after going onto statutory sick pay after four weeks, the loss of income was worrying. I don’t think people realise how difficult it is to continue performing in a work capacity whilst you’re undergoing treatment for a brain tumour. I’m lucky my employer, Savills Property Management, has been so supportive, I couldn’t have asked for any more.
“I’m currently doing a phased return to work, three six-hour days each week.”
I don’t think I’ll ever go back full time. Eighteen hours a week is probably as much as I’m ever going to cope with now, but it does give me the opportunity to have nice long weekends.
“There are two things I’ve really struggled with during this journey I’m on.”
The first, hair loss, is something I didn’t think would bother me, so caught me off guard. Incidentally, when my hair grew back it did so without the greys. The other thing is the removal of my driving licence, which has been very hard to accept. Driving had been a big part of my life, so this has taken away my independence.
“Unfortunately, I do still suffer with constant headaches, which only started after my surgery.”
These were being treated with the nerve block painkiller pregabalin, but I’ve had to half the dose and start taking oral morphine and mirtazapine as well because it was making me very unbalanced. I also have two prolapsed discs as a result of being less mobile, for which I take the anti-inflammatory drug naproxen.
Thankfully, my mobility has improved and I’m nowhere near as unsteady on my feet anymore. I was walking with a stick and using a mobility scooter for longer distances, but last month I went to the Peak District and was walking quite a bit. I’m still on steroids for the swelling in my brain, but I’m being weaned off them and am feeling good.
“I’m hoping my next MRI scan will show I can be taken off the steroids completely as they’ve caused me to put on about three and a half stone.”
I became aware of Brain Tumour Research through a support group Donna follows on Facebook. As a result, staff at Watford’s Atria shopping centre, where I work, and some of the retailers, took part in this year’s Wear A Hat Day, raising more than £1,000. We’ve also just supported Wear A Hat day with Flowers, raising further funds and awareness. People can still donate at: www.justgiving.com/fundraising/gary-henson.
“I posted an Instagram photo of my doberdor dog, Norman, in a hat and was amazed by the number of positive messages and comments I received.”
I was so shocked when I found out that just 1% of the national spend on cancer research is allocated to brain tumours. After being diagnosed with one and talking to others about it, I realised how common they are. It’s something we drastically need to address to get more investment in brain tumour research and I intend to do what I can to help. We’re already planning future fundraisers at the Atria. Watch this space.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure