In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Father-of-three Mark Thompson was living a normal life when suddenly, aged 33, he was dogged by dizziness, headaches and vision problems. A scan revealed he had a grade 3 astrocytoma, and after an awake craniotomy he was offered the NHS standard of care; radiotherapy and chemotherapy. He was given an estimated three to five years to live. However, Mark sought a second opinion and privately funded immunotherapy treatment in Germany. Nearly five years on, his scans show no signs of cancer in his brain. He is now fundraising to continue with a decreased dosage of the treatment, in the hope of reducing the risk of the tumour returning.
Mark tells his story…
My wife Sofia and I were enjoying life in Littlehampon, West Sussex, and our three beautiful children, and I was working in horticulture, growing bedding plants.
But in February 2018, I started getting a lot of strange symptoms, including dizziness and pins and needles down right side. My vision also became bad, intermittently, I’d be almost blinded by bright lights flashing and I couldn’t see anything in front of me.
Over the next six months I went back and forth to A&E and doctors about four or five times. They couldn’t find anything wrong; they did blood tests and everything, but I was always told to go home and come back if it got worse. It did keep getting worse and in the end my doctor said he was going to send me for a scan that week. He handed me a leaflet about brain tumours and said: “I don’t mean to scare you but it could be this.”
“Immediately, my heart dropped and I just thought, ‘oh great’.”
The next day I had to phone 111 because I had a terrible headache, and when the call handler asked me what was wrong, I couldn’t speak. I knew what I wanted to say, but I couldn’t physically get it out.
The following day, August 28, was the pre-arranged scan. I went to Worthing Hospital for a CT and was told immediately after that they had found a tumour but weren’t sure what type. There wasn’t any messing about. It wasn’t the best to find that out at 33. The first thing that came into my mind was my kids, it was really difficult to deal with. My youngest, Charlie, had only just turned three. But I remember Sofia turning to me and saying: “I don’t think I can do this without you”, and I knew I had to fight it.
When we got the news, my sister in Australia came back home, and my brother who lives in in US came back too. My Mum and stepdad came down from Wales. It was all a bit crazy.
I was referred to an oncologist at Haywards Heath, and told my subsequent treatment would be at the Royal Sussex County Hospital in Brighton. I had an operation booked in for September 12 and up to that point I had about five more MRI scans while they monitored me.
On the day of the surgery, I had an awake craniotomy.
“It was really weird to be awake with people rummaging around inside your head, but it was the best way to make sure they didn’t remove or damage any healthy tissue.”
They were testing me on an iPad, getting me to identify everyday objects like a park bench, or an apple and I had to answer quickly. If I couldn’t answer it meant the surgeon was in an area of the brain he shouldn’t be touching. It was scary but had to be done.
The surgeon took the solid tumour away, it was about 3cm x 3cm. He also tried to take away the astrocytoma cells around it but had to leave some behind when I couldn’t answer the tests quickly enough.
Then they stapled me back up and I was diagnosed with an anaplastic astrocytoma, which is high grade, meaning it’s cancerous. It was also a mutant variation. I was put straight onto daily radiotherapy and chemotherapy for 33 days. It wasn’t too bad, but the radiotherapy did affect my eyes. Even now, years on, my eyes aren’t quite right.
Then I was sent home to start a 12-month course of chemo. I did get quite down at one point during the treatment. I remember seeing a man in hospital, also coming in for chemo, and he was so happy. I thought: “what the hell are you so chirpy about? You’ve got cancer!” but he just didn’t let it get him down. And I realised, I’ve got to be more like him. I can’t be negative. It changed my mindset.
In January 2019, my circumstances changed and I came off the chemo, four months into the 12-month cycle. My sister’s friend, Pip, had advised me to get a second opinion for my treatment plan. She lost her sister to a brain tumour previously and knew a lot about it already.
“She managed to get me an NHS appointment with Professor Dalgleish at St George’s Hospital, and then everything changed.”
He was looking at a host of different treatments, including immunotherapy and cannabis oil. He was studying the benefits of both and carrying out tests alongside a German doctor, Dr Thomas Nesselhut in Duderstadt, but there was a problem with the funding and it had to stop. He recommended I go over to Germany for the treatment, if I could fund it myself.
I emailed the doctors out there with my case, and asked if they could take me on, and they said yes. The first treatment was nearly £12,000, which involved them taking my blood, removing white blood cells, multiplying them, freezing them and then using those for the injections down the line. They also gave me a double shot of Zometa, a bone hardener, to prevent the cancer spreading from my brain to my bones. They have that medication in the UK, but it wasn’t something that was ever offered to me. I was also given the Newcastle disease virus (NDV), which also works to kill cancerous tumour cells. My oncologist at Haywards Heath wasn’t happy about me having any alternative treatments, but I had to do what’s right for me. I just don’t think the NHS looks at any other possible treatment, it’s chemo and radio and that’s it.
In fact, my Macmillan nurse told me point-blank the immunotherapy wouldn’t work, and I’d have to have chemo through IV when it failed. I really wasn’t very happy with her, and it was a shock because my experience with Macmillan nurses who care for my mum has always been excellent. But, regardless, she didn’t put me off. The next thing to do was to just raise the money for it, so we set up a GoFundMe page.
I grew up in Wales, and a lot of my old friends from there put on a football tournament with a disco night, an auction, and a raffle, which raised about £18,000. In total we’ve raised more than £100,000, which has allowed me to be treated up to now, but that money is now gone.
The treatment required monthly doses, at about £7,000 a time, but it worked like magic. When I was originally diagnosed, I was given between three and five years to live.
“I’m now coming up to five years, and latest scans are showing no evidence of the disease at all.”
I’m stable, that’s more than I could have ever hoped for after my initial diagnosis. It’s a huge milestone. There are hardly any side effects with the treatment either, other than a sore arm from the injection, it’s so much better than chemo. Eventually the immunotherapy treatment was reduced from once a month to every three months, and now I’m just on six-monthly treatments.
I do also need to take tablets, which are £50 for a bottle of 90, and I need nine a day. At the same time, I’m also buying cannabis oil. Prof Dalgleish suggested I try taking it three days on and three days off for the best results, and he got it prescribed to me from Scotland. It was £420 for three vials. Eventually though, I found it cheaper to source it privately.
I’m continuing to have scans at Haywards Heath, but I’ve had no further NHS treatment, and my oncologist doesn’t tell me anything about my prognosis now. I’m under no illusions that it’s possible the tumour may come back, and I’ve been advised by the specialists in Germany to keep on the immunotherapy treatment every six months to a year, permanently, to reduce those chances. Prof Dalgleish also keeps me in the loop for any changes and new treatments.
Everything feels a lot more positive now and I feel pretty much back to normal, other than my eyesight isn’t great. It still goes a bit funny, like a blur in front of my eyes, sometimes, which makes me panic. But Sofia tells me not to worry, she reassures me I’m fine and puts me back in my place before the fear takes over. She helps make me worry less, and she’s right because so far, so good.
Our children know what’s happening. Wilson is 17, so he’s known about most of this from the start. Rihanna, who is 11 now, has seen me going through treatment and has become more aware of the situation in recent years. Charlie is seven but he’s slightly autistic so even though we tell him I’ve got a problem with my head, it is a bit trickier.
“It's strange, when I was diagnosed, one of the first things I thought was that I’d never get to see my daughter walk down the aisle and get married.”
I don’t know why that suddenly became important, but it’s gone from being something I’d never see, to a possibility now. The diagnosis also gave Sofia and me the motivation to plan our own wedding. I’d asked her six years before, but we’d never got round to it. In April 2019 we finally tied the knot. My Mum was diagnosed with MND two years ago and is not doing well at the moment. My stepdad was also diagnosed with terminal multiple myeloma, bone marrow cancer in February, so he is having chemo whilst looking after mum. Everybody has their struggles; all these things give you perspective though.
“I’m not against the NHS at all, but what I have found incredibly frustrating in this whole journey is how limited treatments are in this country.”
Treatments for brain tumours haven’t improved in decades, and it needs to change. I’m supporting the petition from Brain Tumour Research, calling for ring-fenced funding, because the Government needs to invest more money into research, and promising alternative treatments. It needs to support trials so we can get the drugs we need in this country, on the NHS, and not have to go abroad.
I have no doubt going to Germany has saved my life. But it was horrendous, really, with the money and the time away from family. For my first treatment, I was away for two weeks and every other time it’s about three days. The cheapest way to get there is to drive, 12 hours there and 12 back, but you’re still paying out for the Eurotunnel, hotels and food.
None of this could have been possible without the incredible support I’ve had from family and friends over the years, and I really want to publicly thank them. There’s too many to mention them all, but to my mum Jill Evans, and stepdad Marcus Evans, brother Carl Thompson, and brother-in-law Jose Agrela thank you for your unwavering support. To Darren Holden, an incredible friend from football who has driven me to Germany and back the last two times. To my fundraising friends, Charles Harvey who raised £18,000 for me football tournament, Sean Turner, Paul Davis, and so many others.
“You’ve all helped to give me my life back and give me hope for the future.”
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