In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Semi-retired heating engineer Colin Goldberg died in November 2021, 14 months after being diagnosed with a grade 4 glioblastoma multiforme (GBM). The much-loved 67-year-old, of Croydon in South London, was initially thought to have suffered a stroke after experiencing some confusion and a drooping of his face. He was scheduled for a craniotomy and told to isolate for one week prior to surgery due to the risk of catching COVID-19, but he was rushed into hospital early after suffering a seizure. He went on to have radiotherapy and chemotherapy but his health continued to decline. He died at home with his family, and his daughter, the youngest of his three children, holding his hand.
Here is Colin’s story, as told by his daughter Holly …
Dad was the best. He was the life and soul of any party and just a very funny man. He was inappropriate, but in a good way, loved DIY and was simply adored by everyone. I’m a music teacher now but I used to perform a lot and Dad turned up to everything, all my gigs and concerts. He was my biggest fan. In the last two weeks of his life, I played for him for hours. I wish I’d done that more before he got sick but I don’t have any regrets from his last 14 months. I was there for the good, the bad and the ugly. I wanted to give him the type of care I’d never be ashamed of and, although I’ve come out of it feeling lost, even if I’d known how hard it would be, I’d still choose to be there for him every single time because that’s how good a dad he was.
I moved out of my parents’ house and in with my partner, Brad, during lockdown, so it was just the two of them and they got really into cycling, riding up to 13 miles a day. Dad wasn’t your average 66-year-old; he was muscly, fit, strong and at his peak physical fitness when we got his diagnosis, which is why it was such a shock. He’d had a prostate cancer scare towards the end of 2019, which turned out to be nothing, but he’d had an MRI as part of that so I remember thinking he couldn’t possibly have a brain tumour because it would have been picked up then.
The weekend it happened, Brad and I had just exchanged keys on our house in South Norwood, Croydon, which we’d bought knowing it needed gutting and Dad would help. We completed on a Friday and on the Sunday we were working on it and I remember Dad asking where a particular tool was. Brad said ‘it’s right there’ and pointed in front of him but Dad couldn’t see it and kept asking: ‘where?’. It was almost as if he didn’t know what it was he was looking for, because it was clearly in front of him.
“Everyone thought he was being silly and it wasn’t until later, when my brother, Daniel, phoned to say he thought Dad had had a stroke, that we started to worry.”
He said Dad had got out of the bath and forgotten how to take the plug out. He was confused and didn’t know how to shave or move the mirror. It looked like his face had started to droop and he had a blank, confused look about him. Mum and he were concerned about Dad’s sudden change and called an ambulance, which took him to the Princess Royal University Hospital (PRUH) in Orpington, which isn’t our designated hospital but has a specialist stroke centre.
“I was crying my eyes out waiting to hear if Dad was going to be OK and Brad’s mum was trying to reassure me by telling me that lots of people have strokes and recover well.”
When Daniel called with news of Dad’s CT scan, he said they’d been told he had metastatic cancer so we were under the impression the mass in his brain had come from cancer somewhere else in his body. He was kept in a few days, despite his vitals and blood tests looking fine, and because it was during the September 2020 lockdown my mum was the only one allowed to visit him and then just for one hour a day.
“I thought Dad was going to die within days or maybe weeks and started grieving.”
The doctors couldn’t tell from his MRI whether or not it was cancerous, although they suspected it was, and they decided not to do a biopsy but to go ahead and schedule him for a craniotomy at King’s College Hospital, London, on 23 September. Due to the risk of catching COVID-19, he and Mum had to be tested before going into a week of isolation before the surgery. We were apprehensive Dad wouldn’t come out as Dad so, before their isolation started, we organised a really lovely day picnicking together at a park with my other brother, Jason, and two of Dad’s grandchildren, who came down from Leicester to see him.
Unfortunately, Dad suffered a tonic-clonic seizure a couple of days before he was due to have surgery. He jolted upright in bed making this weird noise and then fell facedown into the mattress. He was out for about 15 minutes and was rushed to the PRUH, meaning that he had broken his required isolation which put his surgery in jeopardy, although it was able to go ahead in the end. I was working that day and was left wondering what was going to happen and if he was going to come out alive. Thankfully, he recovered really well.
“Soon after he came home, at a meeting with his consultant at the Royal Marsden Hospital in Sutton, he was given the diagnosis of a grade 4 glioblastoma multiforme (GBM),and that’s when the whole world ended.”
It was too distressing for Mum and Dad to talk about so I turned to google to understand what that meant and that’s when I found out the average survival time was just 12-18 months. My gut fell out. I just couldn’t understand how it was possible for Dad to go from being this really well, happy person to being told he only had a year to live. It didn’t make any sense and was really hard to accept, but he wanted to fight it by having treatment and did a full course of radiotherapy and chemotherapy at the Marsden.
I was watching the Great British Bake Off in early October 2020 when Mum called to say Dad had suddenly become unwell. She said he’d been getting really cold and when they got to the Marsden he became feverish and his hands turned blue. When they looked at him he had a raging temperature which was due to him having pneumonia. He was transferred to the Croydon University Hospital because there wasn’t a bed available at the Marsden and he was so poorly he had to be put on oxygen. Whilst he was there, he was asked if he would want to be resuscitated which was horrible as he thought he was going to die and they made Mum leave shortly after, which left him on his own. Whilst they tried to find him a bed on the ward, he was left alone in a side-room, unable to get up to go to the toilet. He said a nurse came in, saw he had wet himself and shouted at him, calling him ‘disgusting’.
“After that awful experience and having no one to advocate for him, he was adamant he wasn’t going back there.”
I caught COVID-19 and wasn’t able to see either of my parents for two weeks but Dad recovered and came home and, although things weren’t normal, we were getting into the swing of things. Mum was a saint, because she didn’t want to risk Dad being exposed to the virus, she was solely responsible for driving him to and from the Marsden every day and for giving him all his tablets and meals. We didn’t get to see each other properly over Christmas because we went into lockdown but we did meet in a park on Christmas Day. That’s when we started to notice the horrible effects of the radiotherapy Dad was having. His aphasia was really bad; he just couldn’t get his words out and was so chatty usually that him not being able to speak was really frustrating.
“I rarely saw my dad cry before all this but he’d sit down and burst into tears because he couldn’t say what he wanted to.”
I got very good at translating for him, though, and he did speech and language therapy as well as physiotherapy. We were very lucky in that sense because I know a lot of people have to fight for those services which we were offered routinely and I’m very grateful for that because it did enable Dad to have his mobility for longer. He and I also attended an online music group with the charity Aphasia Re-Connect. We did it together via Zoom and I’d often have to mute him because he’d say things he shouldn’t – he lost his ‘filter’. I was one of Dad’s main carers and, not that I minded doing anything for him, but we had fun at that group and it gave Mum two hours off to do her own thing.
“Gradually, over time, Dad’s independence disappeared.”
He got to the stage where he couldn’t even dress himself. He’d put his trousers on his head and wouldn’t be able to work out what to do with them. We’d have to lay his clothes out in the order he needed them. In April 2021, he was rushed to hospital again. Mum called me one night to say she didn’t know what was happening but something wasn’t right. Me and Brad rushed over and found that Dad had forgotten how to use his legs. He was upstairs and just couldn’t understand how to put one foot in front of the other. He’d gained a lot of weight because of the steroids he was taking so moving him wasn’t easy but the paramedics got him downstairs and took him back to the PRUH.
It was the bank holiday so Dad was stuck in hospital for a whole week. He was told he probably had disease progression, which I think was wrong for them to say without a scan. He wasn’t given a toothbrush and when I saw him, I noticed he was covered in big purple blood rashes. I saw them on his arms and then lifted his gown and found them all over his body, but I couldn’t get anyone to come and take a look. Dad started making calls just to tell us how much he hated it there so we launched ‘operation breakout’ and finally got him home. After that he gradually deteriorated. We got him mobility aids but he didn’t want to use them and he began sleeping downstairs because he would get breathless going upstairs to bed, something we later realised was due to a clot in his lung. He would also get up frequently in the night and was unsteady on his feet, so being downstairs was less of a fall risk for him. His chemo was also extended by another round.
In July, around the time of my birthday, he had a scan and was told it didn’t really look like anything had changed but they discovered he had a pulmonary embolism (PE) so started him on blood thinners. He had to come off them, though, after he began coughing up blood and passing blood in the toilet. The consultants decided towards the end of July to stop treatment as the tumour hadn’t changed and they didn’t see the benefit in continuing with it at that time, especially with Dad having the PE on his lung. In August he was becoming more poorly and struggling with his speech and overall condition, so his MRI was brought forward. It was then that they discovered he had a bleed on the brain and that his tumour had grown considerably in the time he’d gone without treatment. His consultants advised they wouldn’t do anything more because his condition really wasn’t good; they were right but I couldn’t see it rationally at the time.
Before Marie Curie stepped in, as a family we took night shifts to watch Dad and make sure he didn’t fall. It got to the point where someone had to take him to the toilet and Mum didn’t want it to be me because she knew Dad wouldn’t want that. I remember counting one night that he got up 30 times, so it was really hard. He also started getting very depressed. He would say: ‘I don’t have long’ and tell me how scared he was and how hard he found everything. I remember thinking how scary it was for him to not know if he’d wake up in the morning.
“I had to reassure him but didn’t know how long he had left and knew that he sensed things were changing.”
He had a little day out with his brother Geoff and my cousin, Stacy, who lives in Canada but came back to surprise Dad after she found out he wouldn’t be having any more treatment, but it was difficult because getting him to a disabled toilet was hard and by then he needed to use one every five minutes. He also went from being someone who was always hot, the type to wear a t-shirt in January, to being really cold, even with thick blankets on him and the heating turned up high so we stopped being able to take him out.
“After he went into palliative care, if we gave him food that was boiling hot, he’d push it away and say it was cold even when it would burn his mouth.”
On my parents’ 33rd wedding anniversary, on 30 September, we were able to have a celebratory meal. I sang for Dad and my cousin, Ben, played the piano. It was a really nice evening. Then it got to the end of October and Dad had a seizure. Mum had to administer the anti-seizure drug Buccolam from the emergency ‘just in case’ box the hospice team left, before the paramedics arrived. They weren’t able to get a doctor out so the team from St Christopher’s Hospice in London came instead and Jason rushed down from Leicester. I’d never seen Dad like that, not fully conscious. I fed him a Cornetto and thought that was a good sign but he fitted 20 times in the space of an hour, so the hospice staff administered a driver and sedated him.
“For the last two weeks of Dad’s life he was in a coma.”
It was like a dream sequence, unsettling to watch and didn’t really make any sense. At one point I thought he was getting better, but it turned out his midazolam was leaking so we put it back in and he became unresponsive again. I couldn’t stay at my parents’ house, except on the floor by Dad, but I wanted to be there when he went so each day I’d ask Jason if it was safe for me to leave. I’d been by Dad’s side throughout and there was no way I wasn’t going to be there at the end. He was never on his own. Every day Ben would come and play the piano and we’d hold little concerts for him. My cousin Max would play the saxophone and I would sing. There was one day when Dad developed an abscess on his arm where the district nurse had put two drugs down one line and caused an infection. Poor Jason, a clinical night manager who became Dad’s chief nurse, cleaned it as Dad whimpered. It was horrible seeing Dad in pain but I thought anything was better than not having him there at all. Eventually I told him: ‘you don’t have to stay for us, we’ll be ok’ and that was really hard but I wanted him to know he didn’t have to suffer anymore, not for us. I’m engaged and I asked my uncle Geoff if he would give me away and told Dad that, if it couldn’t be him, Geoff would do it, knowing he'd be happy with that.
“The next day he started rattling all of a sudden and I knew from what I’d read online that it was the ‘death rattle’ and he would probably go that night.”
At about 2am the noise got worse and I hope no one has to hear that because it’s really distressing. Everyone else went to bed but I slept on the floor and Brad and my mum’s brother Michael sat up wiping Dad’s mouth as he slept. When I woke up at about 7am, the sound seemed to have changed. I looked up what it was like in the last stages of death and read about skin colour turning purple or black. I’d been holding Dad’s hand so I pulled the duvet back and saw his skin was mottled purplish black. He was just a shell; I think his spirit had already gone. I said I thought it was happening so Michael ran off to get everyone but they didn’t get there in time, it was just me and Daniel. I held Dad’s hand as he took his last breath and it wasn’t peaceful or beautiful like they say, it was horrible. It’s an image I can’t get out of my head even though I try not to think about it because it’s not how I want to remember him.
“I’m not the same person anymore; there will always be me before GBM and me after.”
To know someone with glioblastoma is to know a never-ending cycle of awful; it’s like watching them on death row. It changes the person you love; I lost my dad bit by bit every day for 14 months until what was left wasn’t him. He was such a gentle, kind man but there were times with the GBM that he was actually quite mean. He would have given my mum anything and yet we found that he would snap and speak to her in a way he hadn’t in 33 years.
Dad didn’t have a good quality of life in his final 14 months but one thing I can say is that our house was brimming with love. Everyone wanted to be there with him. He might not have had the length of time he should have but he won at the game of life. There are some people no one will turn up for whereas we couldn’t keep people away. It’s sad that he became a brain tumour statistic but I’m so proud that he was my dad and, even though there’s nothing else I can do for him, there is still more I can do for others because I can’t watch anyone else go through what we did. Now it’s happened once, I can see how easily it could happen again and I’m scared of it happening to someone else I love, so I’ve made it my mission to raise awareness. Although it hurts to talk about it, I do and I give people the statistics on how underfunded research is and how many people it affects. I was really touched by the generous donations we received for Brain Tumour Research after Dad died. Sadly, although it looks like a lot of money, I know it doesn’t go far and needs to be ongoing.
“We saw with COVID-19 what can be achieved with adequate funding and now’s the time to do that for brain tumour research.”
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.
If you have been touched by Colin’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