My Story

The Day That Changed My Life

The day that changed my life forever came on Monday 18 August, and started just like any other normal summer’s day.

After finishing work I jogged the couple of miles to my Monday night running club, ready for the session. About 30 minutes into the session I looked at my watch, noted I was feeling good and that I had just ten minutes to go. That was the last thing I remember.

Immediately after this I collapsed and had a seizure and the next thing I remember is coming to about 20 minutes later feeling very disorientated, and not quite knowing what happened. The paramedics arrived shortly after and I was taken to hospital where I had a CT scan and then an MRI scan.

The following day (Tuesday 19 August), I was told the MRI scan showed a likely cancerous lesion on the brain. Doctors told me they believe it was malignant.

During my time in hospital I didn’t really have time to worry. My initial thoughts were, “treatment of cancer is incredible these days, they will take this growth out and I’ll be fine”. It was only when I was discharged on Wednesday 20 August, that I had a bit more time to digest (and research!) what I had been told.

I found out that brain cancer is graded from 1 to 4. Benign tumours are grades 1 or 2, Malignant tumours are grades 3 or 4, and are faster growing, more aggressive and incurable.

The Next Steps

The next couple of weeks were probably the toughest period, with the uncertainty of what was happening constantly playing on my mind. Thankfully things were being moved along very quickly and, on Monday 1 September, I had a consultation at King’s College in London about the next steps on my journey.

My dad, Rachael and I were shown the MRI scan showing my tumour and told that it was operable, and at 2cms the tumour was reasonably small compared to some. They reiterated they thought it was a high-grade glioma, and treatment would be aimed at controlling it, and that it could never be cured. They said they wanted to get me in for surgery in the next fortnight.

I think we were all reassured by the meeting. We were told they hoped to remove a lot of the tumour, and that being young fit and healthy gave me a big advantage. The speed and efficiency with which everything was moving along was also reassuring. We all travelled home happy to have got the meeting done at least!

The next day, Tuesday 2 September, I got a call from King’s saying they wanted me to go in for surgery on Wednesday 10 September, and so I began the countdown! The last couple of days prior to surgery in particular were strange, and it was difficult to think about anything aside from the fact that in a couple of days someone would be drilling into my brain…

On the Operating Table

On Tuesday 9 September, I got the call! Only the hospital told me plans had changed! Thankfully the operation hadn’t been delayed, instead rather than going in that evening, they wanted me to go in first thing on Wednesday 10 September as they wouldn’t have a bed free on the Tuesday. I would still have the operation Wednesday.

Phill had already said he could take myself and my dad up to London on the Tuesday, so I set about looking for accommodation near the hospital on Tuesday night so we could go ahead with the plan, and then my dad and I could walk across to the hospital first thing Wednesday morning.

We stayed in an apartment 20 minutes walk from King’s, right near Dulwich Hamlet Football Ground. It was actually quite nice! Rachael very kindly stopped in on the way back from work and we all sat together in the evening and watched England V Serbia (probably of less interest to Rachael, but she still watched!).  Under the circumstances it was as nice an evening as we could have had! 

I walked Rachael to the station and then headed back to the apartment and set about getting some sleep, I think neither my dad nor I slept much before getting up at 5.30am and walking across to King’s College Hospital on Wednesday 10 September.

Then it was a matter of sitting and waiting and being visited by numerous people and having various tests of all kinds. It was a strange and surreal and nervewracking experience. A nurse mentioned about Gliolan, a drink I would have a couple of hours before the operation which would make any cancerous tumours fluorescent. Very ingenious!

About 11am I was told I was going down for a pre op MRI, this threw me a bit as I had three pre-op MRIs the previous week! I got down there and the dye that shows the tumour was pumped into my cannula and I went into the MRI scanner. I heard the radiologist say  “Oh shit” as she walked back into the room, this obviously wasn’t a good sign!

She told me the cannula hadn’t been put in properly and the dye had gone into the surrounding tissues rather than my veins! Someone else came into the room and fitted yet another cannula in my other hand, and this time the contrast dye was properly pumped into my veins!

I came out of the MRI scan, and was told, “I think you are heading into the operating theatre now”, this was totally unexpected, as I was thinking I would go back up to my dad to wait around for another hour or two before going in for the op! At least it gave me no time to think about it!

I asked the nurse that came down with me to let my dad know, and before I knew it I was in the hustle and bustle of a hospital operating theatre! It was like stepping into another world, people were buzzing around left, right and centre, and I was being asked numerous questions by numerous people. One of which was “Have you had the gliolan yet?”, “No” I said, “and I’ve asked about it twice!”.

I then heard a conversation between two members of the surgical team where one said to the other “Well he can’t have gliolan now, he is going under general anaesthetic in 13 minutes”.

This was the only time I felt slightly concerned during the whole procedure! The anaesthetist could hear the conversation going on and tried to distract me by talking about running, so I was half talking to him and half listening to the conversation about the gliolan!

Then I was in the bed and had an oxygen mask over my face, with a general anaesthetic being administered. It was a strange and scary feeling to know the next time I was conscious I would have had major surgery on one of the most important parts of the body…

I came round about three hours later to someone saying “Steve, steve, we need you to wake up now”. I did wake up and I felt alright! I could move my arms and legs, I could speak, I could feel it was pretty sore where they had cut into my skull, and I had a headache, but all in all, I felt as good as I could expect!

Recovery Time

I spent about an hour in a recovery area, during which time I had a sandwich (cheese), crisps (ready salted), banana and digestive biscuits (three). Then I was pushed upstairs to the ward where my dad was eagerly awaiting my arrival!

I wanted to make sure he knew I was ok, and we had a good chat, and I also spoke to Rachael which was nice. It had been a long day for my dad. We got up about 5.30am and by now it was about 5.30pm and he still had to make his way home, I am not sure many 84-year-olds would have coped as well as he did. I typed out a message in notes on my phone, reread it about eight times for any errors and then copied and pasted it to numerous people and then felt a big sense of relief the surgery was over!

I was in a small ward with four others. One of whom was a 60-years-old. He was very fit and healthy and ran his own business. We chatted about our experiences. He told me that a week prior, as far as he knew, nothing was wrong, then one day he went into work to do his accounts and when he looked at the screen he couldn’t understand anything. He had an MRI scan and was diagnosed with an inoperable tumour. He was given 11 months to live, a sobering reminder of how much more serious my situation could be…

On Thursday 11 September, I got up and out of bed and walked to the toilet, and then later down a couple of floors of stairs to the Costa Coffee. Overall I was feeling pretty good, my head was tender and I had a headache, but all in all I was ok. My dad came to see me that afternoon, and then later Rachael, and it was good to have visitors (two very nice visitors!).

On Friday 12 September I had my post op MRI scans at St Thomas’s. I got hospital transport there and back and had three scans, the team there were all friendly and kind to me, and it was actually nice to have a little trip out! 

I got back to King’s about 2pm, and was hopeful to go home that day, as the day before it had been suggested I might be discharged. I finally got word about 5pm I could go home that evening, I told Phill and he very kindly made his way up, arriving at King’s about 6.30pm.

Unfortunately the wait for my medication was a long one, so we didn’t leave until about 8pm, but that did mean I saw one of the surgical team and a nurse just before I left who had looked at the post op MRIs, they told me they were really pleased with them and that the operation had gone well and they had removed most of the tumour. I was relieved!. Phill kindly drove me back and I got home about 9.30pm on the Friday.

The Biopsy Results Are In…

Considering I went in for the surgery on Wednesday lunch time, I was feeling remarkably well when I got home and the only noticeable side effects of the surgery were tiredness and brain fog.

However I was brought down to earth with a jolt on Tuesday 16 September. About 10am Ellie from the oncology team at King’s called to say they had my biopsy results and could go through them with me at 11am if that was convenient.

This was obviously a big moment, and Rachael, Dad and I joined at TEAM’s call with Ellie as she explained the different grades of brain tumours before she said, “I am sorry to say we can confirm yours is a grade 4 tumour, it is a glioblastoma.”

A glioblastoma is the most common type of malignant brain tumour, and it has a terrible prognosis. The average glioblastoma survival time is 12-18 months, only 25% of patients survive more than one year, and only 5% of patients survive more than five years. Find out more about glioblastomas.

From what we had been told previously I had been preparing myself to hear this. They had always said my tumour looked like a high-grade glioma, and with a glioblastoma being the most common type of high grade glioma, I knew there was a fair chance this would be the outcome. However it shook my dad and Rachael, and all of a sudden I really started to think that I might not be around in a couple of years time.

It is hard to get your head around your own mortality at times like this, and even harder to think about how painful the end of your life might be when you are suffering from a brain tumour. I told a few people, but in all honesty I needed the rest of the day to process everything.

However I also was aware that despite this grim diagnosis, there were some positives:

• I am young and healthy in comparison to most people who get a glioblastoma.
• I had a good surgery where they removed nearly all of the tumour.
• I have tolerated all the treatment very well so far.
• My tumour has good methylation levels. Methylation is determined during a biopsy and is a way of measuring how likely the tumour is to respond well to chemotherapy. Around 50% of glioblastomas are not methylated at all, whereas my tumour is highly methylated at 53%.
• The biopsy of my tumour revealed it is lacking some of the more aggresive mutations commonly associated with glioblastomas.

So after a brief break for my brain to recover from the surgery I began 30 days of chemotherapy and radiotherapy on 8 October. View a timeline and full details of the treatment I have so far.

Updated: 4 February 2026.