Derek Isaacs, a self-employed building surveyor from Cambridge, was initially thought to have suffered a stroke when he was diagnosed with a glioblastoma (GBM) in November 2022. He had experienced brief numbness in his leg, tiredness, some forgetfulness and his doctor had noticed he had a slight right-sided face droop. Derek underwent surgery but suffered a seizure and brain bleeds shortly after, from which he never fully recovered. He died nine months later, in August 2023, aged 62.
Here is Derek’s story, as told by his wife Sigrid …
Before Derek got sick, all our focus had been on retiring. As a self-employed building surveyor, his primary business was in London. He drove about 30,000 miles a year and we weren’t able to take long holidays because he was in charge, so for years we’d been preparing financially for retirement and giving up work. Only two weeks before everything happened, we’d put in an offer to buy a place nearer the coast, but still within a reasonable distance of our respective families and workplaces. We didn’t get that property but that whole process gave us a bit of a boost and made us think it would be possible to do things sooner rather than later. Derek had already started turning down contracts for 2024 and 2025 and was beginning to tell his clients he wouldn’t be around in the next couple of years.
“The first sign something was wrong came at the end of October 2022 when Derek experienced 30 seconds of numbness in his leg whilst driving home.”
He said it felt odd but it soon went away and he had just picked up a new car so we thought it could have been caused by his new seating position in that. He was also really tired when he got home. He’d normally sit on the laptop and type up his day’s notes but instead he went straight to lay down.
The next day, Derek went into the office and he called me to say he couldn’t remember the name of a show we’d seen at the weekend. He’d also tried to do some work on a spreadsheet and, despite it being quite a simple task, found himself really struggling. So he came home early and we arranged for him to have a video call with our doctor that afternoon.
“The doctor said she thought she could see a right-sided droop in his face and told us to go straight to A&E.”
We went to Addenbrooke’s Hospital, in Cambridge, around 2pm but it wasn’t until nearer 10pm that he was taken into majors. I then went home and at 5am he sent a message saying he was being admitted and would be having a CT scan because they suspected he’d had a minor stroke. His dad had had a minor stroke a few years before so that seemed plausible. I returned to the hospital in the morning as Derek was being prepared for discharge, put on blood thinners and told he wouldn’t be able to drive for 28 days. We thought we would soon be leaving, when a group of three doctors came and pulled the curtains around his bed.
“Apparently Derek had also had an MRI scan that morning and we were shown an image of a mass on his brain and told he had a brain tumour.”
The doctors wanted us to speak to a neuro specialist. When they were unable to get him into the relevant clinic the next day, we were told we’d have to wait a week to see anyone, so Derek was put on steroids to control any brain swelling and discharged. We arrived home with lots of complicated medical forms listing all the tests he’d had and on that I saw the word glioblastoma (GBM). I remember googling the term, seeing what it said and quickly closing the page. One of the three doctors who had informed us about the brain tumour also said ‘you need to get your affairs in order’. I thought she meant getting Derek out of work meetings because he would be having surgery, but I now realise she understood his tumour was a death sentence. We, however, never did, not until it all went horribly wrong.
“My dad died the same day we got Derek’s official diagnosis, so it was a particularly dreadful day.”
The doctors told us they’d seen enough of these tumours to know what it was and they recommended Derek underwent a debulking surgery followed by radiotherapy and chemotherapy. They did say we could do nothing, or that we could opt to just have a biopsy, but they wouldn’t recommend either. I asked if we should talk about prognosis and was given the option of doing that in general terms then or in more specific terms after they’d operated and seen what they were dealing with – Derek opted for the latter.
His surgery was scheduled for two weeks later. He returned to the hospital a week early because he had agreed to take part in a research study assessing the impact of brain surgery on cognition and was required to have an additional MRI and answer some IQ questions, which would be repeated after his op. I was warned it could take a couple of days for him to come round after surgery, which they said had been successful. I visited him the day after and sat with him but it was clear he wasn’t going to regain full consciousness that day. I was contacted that evening when he was moved from a side room to a ward. He was the same the next day, still not responding well, and the following day a specialist nurse told me she’d increased his steroids to try and get him to regain consciousness, as they were concerned he wasn’t surfacing as well as they had hoped he would.
Derek was due to have another MRI scan three days after surgery, but he was complaining of being in pain and wasn’t able to have it because he kept being sick. When I opened the curtains around his bed, I found him sitting up with his whole body spasming. The rapid response team was called to stabilise him. I was told he’d had a seizure and would be out of it for a while but should be better by the following day. Sadly, he wasn’t. He was taken for another CT scan, which revealed he had a bleed on the brain and, after a subsequent scan showed he was still bleeding, he was taken in for another surgery.
“He actually ended up having three brain surgeries in five days, two to control his brain haemorrhage.”
He went from having full use of his body to completely losing the use of his right-hand side, as well as his speech and cognition. He did regain consciousness but not capacity. He stayed in hospital until the end of December and each day we were getting more and more of him back but, because he was on an acute ward, no therapies were available and I wasn’t permitted to bring anyone in to help on a private basis. I registered with the hospital so I was able to wash and feed Derek and didn’t have to abide by visiting hours.
“He was given another week to recover further and then I was called into a room and told they were going to let him go home to die.”
Derek’s limited mobility meant he was no longer eligible for radiotherapy or chemotherapy so we were told there were no more treatment options for him. Instead, he was fast-tracked for palliative care to get us the support we needed at home. Officially, they were saying Derek had three to six months to live but because he’d had surgery and more than 90% of his tumour had been removed, we were told he was more likely to survive six to nine months. I remember weeping and thinking he didn’t know he was dying.
“I’d been trying everything to bring him back from the brink of where they’d put him.”
Our care package consisted of two carers four times a day, but I was Derek’s full-time carer. By January 2023, he seemed to be getting brighter. He was soon able to sit up and had even managed to remove a sock from his right foot. I began paying for a private physiotherapist and a personal trainer, and I got somebody to manage our diary so we could fit in everyone who wanted to see him around his healthcare provider visits and his fatigue, which was significant. I also did everything I could think of to help fire messages to his brain, watching films he knew well, Wordle, Countdown, anything to try and pull bits of him out of there. It seemed to work, but the doctors told me Derek was regaining cognitive function because his brain swelling was going down and assured me his tumour was continuing to grow.
“Nevertheless, we ended up in a positive scenario where Derek was able to use a Molift Raiser to pull himself up without the need for a hoist, and he even started taking steps.”
We were able to lunch out, visit pubs, go for walks and in around mid-June I got him to Norfolk overnight so he could see the sea, which ended up being the last thing he did outside. His condition began deteriorating from about the end of May. He had a seizure not long after that and his steroids dose was gradually increased from one to 16mg. He was also put on the anti-seizure medication Keppra and, six weeks before he died, he began receiving morphine.
“Derek never got unwell or took medicines before this and, although I knew it was going to be a challenge, I couldn’t register that he had incurable brain cancer until much later, so I just wasn’t prepared for him to die.”
For months we were left in limbo without any specialist care for his brain tumour, which wasn’t right because the palliative care team weren’t there to help him recover. Treatments for brain cancer are brutal and only exist to buy a patient more time.
This has got to change, which is why I now support Brain Tumour Research. It’s Derek’s birthday in July and to mark that I’m going to sponsor at least two days of research, one at each of the charity’s Centres of Excellence at Queen Mary University of London and Imperial College, London. Having discovered that a GBM diagnosis is a death sentence, I know this is something Derek would be fully supportive of.
Anyone wishing to donate in Derek's memory can do so at www.justgiving.com/page/derekisaacs
Sigrid Fisher
January 2024
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Sigrid’s story you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure