In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Steve Ryder from Calderdale, West Yorkshire, was diagnosed with two secondary brain tumours and two bleeds on his brain after suffering a seizure while out cycling in July 2020. The 51-year-old has since undergone a craniotomy and immunotherapy to treat the disease. Having stopped working in IT for Lloyds Banking Group since his ordeal began, Steve is spending some of his spare time fundraising and raising awareness for Brain Tumour Research.
Here’s Steve’s story…
I first noticed a few funny spells in spring 2020, towards the beginning of the UK’s first COVID-19 lockdown. I would sometimes get a head rush if I stood up quickly; my head would spin and I felt dizzy. I didn’t think much of it, as it would quickly subside. I also noticed, in the months leading up to my diagnosis, that when I was asleep at night, I would experience a ‘pins and needles’ sensation in my left arm. It was becoming increasingly difficult to relieve, no matter how much I moved to reposition myself. On the week leading up to my first seizure, I went to say something to my wife Eileen and noticed my speech was slurred and she couldn’t understand me. It was quite early in the morning, before I’d had breakfast, so I thought it might have been my sugar levels.
I am a keen cyclist and last year I was involved in a virtual charity cycling event with colleagues from around the UK. The challenge was an England versus Scotland challenge, with both teams competing to clock up the most miles between 1 May and 24 July. On 7 June 2020, I was coming back from a 30-mile training ride and was only a couple of miles from home when I started hallucinating. I had tunnel vision and could see flashing lights. I was also very disorientated and as I approached the turning where I’d normally turn off for home, I missed it completely. Again, I put this episode down to low energy levels and thought it was probably nothing concerning.
On Friday 10 July, the day before my first seizure, I was writing emails for work and I realised everything was taking longer than it usually would and I couldn’t understand why.
“I was struggling to write a two or three-line message and would have to rewrite it several times. It was frustrating but I still didn’t suspect that anything was seriously wrong.”
It wasn’t until the afternoon of Saturday 11 July that it became apparent just how serious things were. I was out on a particularly challenging ride when, around 45 minutes in, I began to struggle. It was a hard session but I noticed that I was finding it significantly more difficult than usual. I was at the bottom of a hill about to turn left at a T-junction, when all of a sudden, I felt really odd. I can’t really describe what it felt like but it wasn’t bad enough to warrant stopping, so I took on an energy gel and turned left to start the climb up another steep hill.
“Around a quarter of a mile up the climb, my mouth started opening and shutting on its own. I put my hand over my mouth to try and stop it but the movement was involuntary and it continued.”
I stopped and rested my bike up against a wall at the side of the road and sat myself down. A few seconds later, I began fitting. I couldn’t speak and I’d lost all control of movement in my arms and legs but I was completely lucid in my thinking. It was really scary, as I didn’t have a clue what was going on. I wondered whether I was having a heart attack or a stroke but I wasn’t in any pain. I had a very clear thought that came in to my head: “Is this it? Is this how I’m going out, alone at the side of the road?”. I felt very frightened and alone. I managed to wave my arms in a way that would attract the attention of passers-by. A woman stopped and got out of her car; as luck would have it, she was an epilepsy nurse. A second car stopped and the motorists called an ambulance. A couple of minutes later, I regained control of my limbs and my speech returned to normal. I got my phone out and someone called Eileen to tell her what had happened. She found out where I was and drove to meet me. When the ambulance crew arrived, they did some tests and took my blood pressure. By the time they’d finished doing that, I felt fine again and was able to walk onto the ambulance unaided. It was all very strange.
The paramedics took me to Calderdale Royal Hospital in Halifax, where I underwent more tests. I was admitted onto a ward while they continued to observe me and that evening, I was sent for a CT scan.
“Because of the coronavirus restrictions, Eileen wasn’t able to stay with me and so I was on my own when, at two o’clock the following morning, the curtains were pulled back around my bay and I woke up to the sight of eight medics at the foot of the bed.”
Everyone was masked up, so I couldn’t read their expressions. One of them unceremoniously told me that I had two brain tumours and two brain bleeds. I had prepared myself for some bad news but I never suspected brain tumours. It felt like the bottom had fallen out of my world. None of them gave me any reassurance that the tumours may be treatable and I assumed the absolute worst. I went into shock and felt my blood pressure rising. I knew I was going to have another seizure, so I forewarned the nurse next to me and he busied himself with trying to put a canula in me to administer anti-seizure drugs, while I started fitting. This seizure was more severe than the first, as my head was moving uncontrollably over my left shoulder. I tried to calm myself down and allow the seizure to pass.
The medics left and I immediately thought about Eileen, who I needed to break the news to. The doctor called her and she was allowed to come in and stay with me for the rest of the night. It was much needed, as my mind was racing, trying to digest the terrible news I’d just been given. I spent the night wondering if it was a death sentence and started to come to terms with the fact that I could be dying. However, I knew I needed to be strong for my family. I am stepdad to Eileen’s three children, who are 13, 16 and 26. I thought about the kids and how I needed to survive to be around for them.
“The doctor had made me feel like a victim but I decided to take some control back and I knew that I was going to fight it, with the children as my driver.”
The next morning, I saw more doctors and I was sent for another CT scan, to check for any further damage following my second seizure. Fortunately, there wasn’t any. My case was referred to Leeds Centre for Neurosciences at Leeds General Infirmary (LGI), to be discussed at their weekly multi-disciplinary team (MDT) meeting three days later, on Wednesday 15 July. This would only happen, however, if I had an MRI scan before then. I spent all day on Monday waiting for the scan but it finally happened on Tuesday, in time for the results to be sent to Leeds. At midday on Wednesday, I got a phone call from the Leeds neurology team inviting me to go and meet them at two o’clock that afternoon. Eileen drove us over and we met consultant neurosurgeon Mr Thomson. He spoke to us in a very matter-of-fact way, which I found really calming and reassuring. He said that something could be done to treat the tumours and that if it was up to him, he would have them removed by the Friday. There was a confidence in his voice that I found very comforting. The bad news was that Mr Thomson was going on annual leave and wouldn’t be around to carry out the surgery that week. The good news was that the tumours, one in my temporal lobe behind my right eye and the other on the same side but further back, were operable. He said one of his colleagues would be able to do the craniotomy in his absence.
I then had to go home and wait for a phone call with an appointment for the neurosurgery. The next day I received that call and they said they had a slot available on 24 July, which was eight days away. I then felt like I had to go into survival mode for the next week or so. My life turned into an hour-by-hour existence, as I chunked up the day into manageable goals, wishing the time away until the day of my surgery.
“I had been prescribed steroids to manage my symptoms but as the dosage was reduced, I began to feel worse. Eileen could see that I was deteriorating and would ring my sister to share her grave concerns.”
By Tuesday 22 July, I was having to be pushed around the hospital in a wheelchair when I went in to have my pre-surgery COVID-19 test. The following day I was back at LGI for my pre-op assessment and thankfully, all went well and I was asked to come back early on Friday 24 July to prepare for surgery. I was so relieved to have made it to the day of the operation and just wanted to get it over and done with. By now, my face had started to drop on my left side and my speech was affected too. Before the operation, I sat down with my surgeon, Mr Ryan Mathew, who was absolutely brilliant. He explained that there were many risks involved, including the possibility of losing some ability in my left side, and a negative impact on my speech. As I signed the consent forms, I realised I’d become so weak on my left side, that I couldn’t hold the pen or write properly.
As if the situation couldn’t have been more stressful for Eileen, as she waited for me to be taken into theatre, she received a phone call to say her mum had died. My mother-in-law was 83 and had been suffering from dementia for some time. It was just horrific. As I got wheeled away, I felt awful that I couldn’t be there to support her. She was told the surgery was likely to last around four hours but it turned out to be a seven-hour operation. When I woke up in recovery, the first thing I remember was asking the nurse what time it was and she told me it was quarter to seven in the evening.
“I had 57 staples in my head but thankfully wasn’t in much pain at all. I spent three nights recovering in hospital, during which time I had an MRI scan, to check how my brain was looking after the operation.”
The scan images confirmed that both tumours had been successfully removed, which was a huge relief. The Sunday after my operation, Mr Mathew took the time to video call me from home to check how I was doing. He asked me to carry out some basic tasks and I could see the delight on his face when I was performing well. I knew in that moment just how invested he was in his job. It seemed that the operation had gone as well as it possibly could have and everyone was happy with my progress, so I was allowed home on Monday 27 July.
Samples from my tumours were sent off to histology and I waited ten days to receive the results. I was invited back in to see my original consultant, Mr Thomson, and was shocked to discover that the results from the biopsy showed I had stage 4 melanoma. My brain tumours were secondary tumours but no primary tumours had been identified. It later transpired that I had received incorrect results from a histology report on a mole that was removed from my chest in May 2018. Having been told that the mole was non-cancerous, it was re-analysed and cancerous melanoma cells were, in fact, discovered. It was very difficult news to digest.
“I was put on a course of immunotherapy, which started on 7 September 2020. It involved a two-drug combination, administered intravenously four times, with a three-week gap in between each treatment.”
It was daunting going into it, as it is a fairly new type of cancer treatment. By a strange coincidence, however, my former neighbour and good friend Paul had had a very similar experience to me and had been through the same treatment. Unbelievably, he also had a seizure while out on his bike and had been diagnosed with two secondary brain tumours. He had gone through surgery and immunotherapy six months prior to me and so we often speak on the phone about our shared experiences and compare notes!
I finished the two-drug immunotherapy course in November and that was when I started to suffer from quite a lot of side effects. My skin was itchy and I generally felt unwell. I had some blood tests, which revealed that the alanine aminotransferase (ALT) levels in my liver were raised and I was diagnosed with a form of hepatitis. It also transpired that my pituitary gland had been impacted by the immunotherapy treatment and my body had stopped producing cortisol, so I was given Hydrocortisone tablets, which I have to take daily. My thyroid started malfunctioning, so I was prescribed thyroxine as well. All of this combined with the steroids I was on, amounted to a real cocktail of drugs to try to keep me well. At one point I was on 20 tablets a day!
“I haven’t worked since the ill-fated bike ride in July but I am lucky to work for a large company with a good statutory sick pay policy, so I haven’t had to worry about the financial impact of the disease.”
Anyone who knows me will tell you that I’m a very mentally strong and resilient person but this experience has certainly tested me to my limits. At times, my temper has been short and I’ve reacted to things I wouldn’t normally react to. I’ve felt anger and frustration over the misdiagnosis but I try not to be bitter or to focus too much on the negatives. The last set of MRI scan images I had back in November looked good, with no signs of tumour recurrence.
Unfortunately, I had a setback on 19 December, as I suffered another seizure. It was my birthday the day before and I hadn’t had an alcoholic drink since July. I had two-and-a-half glasses of wine to celebrate my 51st birthday and felt fine. The next day, however, I had a seizure in the hallway at home. I’d been upstairs in the bedroom when it started, so I made my way downstairs to make sure I wasn’t on my own. The dogs saw me and started barking, which alerted my step-daughter and she called Eileen. Eileen rang for an ambulance and I ended up at Halifax Hospital. They did some tests and all the results came back OK but I’ve avoided alcohol ever since, as I’ve realised it can lower the threshold for seizures.
I suffered another seizure on 24 January, just as I was about to take the dogs for a walk. This time it was worse and I blacked out for ten minutes. Both recent seizures have happened at the point of being weaned off my prednisolone steroids, for my liver issues, which seems like more than just a coincidence. One of the most frustrating things about having a seizure, is that it delays the process of getting my driving licence back. I haven’t been able to drive since my first seizure in July and it will be at least another 11 months or so until I can drive again.
“Losing my independence is a real knock to the confidence, as is the constant nagging fear that another seizure could happen at any moment.”
The side effects I had after my two-drug immunotherapy course finished have now been resolved, with all my blood readings back within normal range. I began the next stage of my immunotherapy, a single drug treatment, on Sunday 14 February. I am still being scanned every three months. I had my latest set of scans on 15 February, with results due at my next consultation on 11 March. Hopefully, if they continue to be stable, the scans will be reduced to six-monthly in time.
For my birthday in December, I set up a Facebook fundraiser for Brain Tumour Research, asking people to make a donation rather than giving a gift or sending a card. I wasn’t sure what kind of response I would get, especially since we were still in the throes of the pandemic but I was blown away to receive donations amounting to £2,600. I just wanted to do something to give a little bit back, especially when I started reading into the shocking statistics surrounding the disease. The generosity, love and support from my family and friends in helping me raise this amount of money has been overwhelming, to say the least.
“I’m still coming to terms with everything that has happened over the last few months.”
I have had to put on a brave face for the kids but even so, they have coped remarkably well with the situation. I try to set a good example, to teach them about resilience and overcoming adversity. I have turned to meditating to help deal with my thoughts and feelings, using the Headspace app as a guide. It has helped my mental health immeasurably and also aided my sleep, which has been really disrupted. Going through something like this really helps to put everything into perspective and my outlook on life has definitely changed. I’ve learned to live a lot more, as best you can during lockdown, and not to put things off. I advise others to do the same, as you never know what is around the corner. You only ever have today; tomorrow is not guaranteed.
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 historically 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.