In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Barry Albin-Dyer OBE
When respected Bermondsey undertaker and family man, Barry Albin-Dyer OBE, started seeing zig zags in front of his eyes, he could not have guessed that a scan would reveal a very aggressive brain tumour near his optical nerve. Determined to survive and be a “Bermondsey boy for years to come”, he underwent gruelling treatments, documented his battle in his blog, and sadly died less than two years later.
“Barry, being Barry, was determined to keep going in to work every day he could. “I’ve got to keep on going,” he would declare, “or I’m a dead man.” Barry had a strong will and a strong Catholic faith, and two those things helped him get through it. He never wanted the cancer to take him over and stop him doing the things he loved. I’ve always thought that was what kept him alive for as long as he was.”
Here is Barry’s story, as told by his partner of 18 years, Jackie Costin…
It sounds strange but Barry Dyer was born to be an undertaker. He grew up over the 200-year-old family funeral business, F.A. Albin and Sons, in Bermondsey, South East London and never really considered any other profession. It was in his blood, he would say he couldn’t do anything else. When Barry took on the business, he even changed his surname to be Albin-Dyer.
By an odd coincidence, Barry’s father had a brain tumour too, although George’s was benign and he lived for decades with it, well into his eighties. Of course, Barry was a family man too - we had 15 grandchildren between us – and Barry’s two sons, Simon and Jonathan, shared his commitment to the business. The staff at Albin and Sons were his family, as well as the boys.
I worked at the business for 25 years so we had known each other for ages before we got together. We were both on our own, so we started to accompany each other out for a meal on occasion. Barry never liked eating alone. One evening we went to see Four Weddings and a Funeral and it went from there really. We always got on so well. Barry was the kindest man I’ve ever met. We never went to sleep on a row and he would tell me he loved me every day. It felt like we were just getting started; Barry and I had such plans for our retirement together. We even had a marriage license all ready but, in the end, his health was never quite stable enough for us to arrange the wedding.
Barry had always suffered with migraines and seldom slept more than three hours a night. He used to stay up all hours writing his many books. He was so proud to have several books published. In 2013, I started to notice that he was taking painkillers more often, but he had had a brain scan a few years before – to be on the safe side after his dad’s brain tumour – and they had found nothing.
Traditions were so very important to Barry, as were people; we lived our life around the Friday full English breakfast for the staff, Friday night beers after work and our Saturday night meal out. One morning in late June 2013, I was preparing the usual Friday fry-up when Barry remarked that he was seeing zig zags in front of his eyes. He was blinking repeatedly at work so I called a GP friend for advice. The GP called him in and sent him over to London Bridge Hospital to get checked out. A few days later Barry had a brain scan, which identified a brain tumour. I couldn’t believe it.
We went to see the consultant, Neil Kitchen, at the National and he told us the truth straight away. Barry wanted to know what he was facing and was told bluntly: “Barry, you’re in a bad place. You have a grade four glioblastoma multiforme brain tumour near your optical nerve, but the good news is that it’s operable.” A couple of weeks later and Barry was in surgery, with me pacing the corridors for hours, until he came out all bandaged up like Papa Smurf. The consultant told us that he had managed to get most of the tumour out, but not all, and the prognosis wasn’t good. Barry had nine months to a year left “if he was lucky”. Barry didn’t let on how scared he must have been, saying: “I can fight this, the cancer doesn’t know who it’s taking on!”
After the surgery came chemotherapy and radiotherapy. Barry felt tired and slept a lot of the time, losing his appetite and much of his energy. He was also nauseous and suffered with itchy skin, some of the treatment’s side effects. Barry, being Barry, was determined to keep going in to work every day he could. “I’ve got to keep on going,” he would declare, “or I’m a dead man.” Barry had a strong will and a strong Catholic faith, and those two things helped him get through it. He never wanted the cancer to take him over and stop him doing the things he loved. I’ve always thought that was what kept him alive for as long as he was.
Months passed. I kept a diary of all his ups and downs, while Barry also wrote about his illness, posting updates on the company website and planning ahead for his next book, as yet unpublished. He was so brave, putting on a front to protect us, and trying to stay strong. I remember him coming in to work telling his sons that he was just fine, even when he had been up all night in great pain. Barry never wanted to be a burden, that was the thing that made him most upset. On his low days, he would say “it’s not fair to you, I’m useless.” Most of the time though, he knew that wasn’t true.
He remained the boss at work, some of the boys cheekily referred to him as “God” when he wasn’t around! Barry set high standards, he knew what an important event a funeral is for a grieving family and he always delivered the best. Extremely particular, everything and everyone had to be just, right down to clean fingernails for the pall-bearers. Barry would shine his shoes and put on a clean shirt for every funeral he led, even if there was more than one in a day. He was well respected in Bermondsey and people would come in, only wanting Barry to do their loved one’s funeral. He gave up so much for others, working 12-hour days, cancelling holidays and giving up weekends if he was needed by someone. Barry was something special. He wore his heart on his sleeve and everyone loved him for it.
I especially remember a local old lady who used to come in to the office each week to pay off her late husband’s funeral in small instalments. Barry spotted her one day, he knew her name of course, and had a chat to her. He realised quickly that she wasn’t well off and, right then and there, he wrote off her whole debt. She was in tears, so he even got one of the boys to give her a lift home. Barry looked out for people like that, he would always help if he could.
Albin and Sons arranged the repatriation of the military fatalities from war zones and Barry was very involved in that side of the business. He went out to Afghanistan several times, we have a mortuary out there, and looked after the soldiers. He saw some terrible things, some really horrific injuries, but he took care of those boys and made sure they had proper funerals. It was Barry leading the processions through Royal Wootton Bassett that you see on the TV. He had some near misses himself! It was a dangerous place and his helicopter was shot at by the Taliban, soldiers sitting close to him returning fire. When he got his OBE for services to the military, we all went to the Palace for his special day. He was so proud and surprised; he just hadn’t expected it.
Things were up and down all through 2014. I was taking care of Barry, while he was still determined to keep life as normal as possible. One evening in March he came home from work, wanting a nice bath before dinner, but when I went into the bathroom to call him for dinner, I found him talking to the wall as if I was standing there. We went downstairs to eat, sitting at the breakfast bar, and I could tell something wasn’t right. His eyes kept moving to the side. Barry started to fit, all eighteen stone on him slipping from the stool as I frantically tried to grab him. I still don’t know where I found the strength to catch him! He was in hospital for a week after that incident.
As time went on, we valued anything that offered a bit of normality. Barry had some wonderful friends who would take him to the barbers for a haircut and a shave – man’s business for a Bermondsey boy! It was so important to him to look the part; Barry was always immaculate and just didn’t look right in casual clothes. The staff at work were great, understanding why he needed to be there but making sure he didn’t overdo it. Barry was so proud of his sons, Simon and Jon, and loved to watch them grow into their roles in the business with such dedication.
Barry went on to another chemotherapy treatment, Avastin, in October 2014. He couldn’t always have it, if his platelet count had dropped, but his tumour appeared to be shrinking. Barry wasn’t well over Christmas and New Year, a chest infection meant he was back in hospital again, but he kept up his blog even from his hospital bed. As his treatment continued, Barry was still hopeful that each scan might bring better news. He would tell us all that he was feeling fine and well and wanted to be with us for many years to come. We were in and out of London Bridge Hospital though, Barry had some tests on his liver in April 2015 and there was talk about a bone marrow injection. The brain tumour, and his treatments, left him weakened, with a low immune system.
In May 2015, Barry had been in hospital with another chest infection and round of anti-biotics and steroids, when a scan revealed that the tumour was worse. It was the worst day ever. Barry was so unwell, very confused and scared, he was desperate to go home. Barry’s last blog post, on 14th May 2015, said “take care of each other – life is precious”. He came home from hospital, to his family, with no further treatments possible. We had converted the garage to a one-bed flat a few months before, trying to make it accessible as Barry’s mobility decreased, but it was difficult to manage physically, even with a wheelchair and a hospital bed in there. Barry was a proud man, he didn’t want anyone except me to touch him and couldn’t bear the nurses helping him dress or anything like that. He never wanted his sons to see how weak he had become, although of course they could see it and were a big support to me.
The last weeks of Barry’s life were spent at home and we were grateful for that. He could not walk much and had poor coordination but it was a beautiful early summer and we had kept up our ritual of Saturday dinner out with friends. I don’t think he ever missed one! On his last Saturday, he had a headache but was still positive he wanted to go out. Barry never wanted to, as he put it, “sit here, rotting away”. Very soon afterwards he slipped into a kind of a coma, he was no longer properly conscious although he did seem to be able to hear us. We would all be around him talking during that final week, his friends and family, telling him about work and what the grandchildren had been getting up to.
When Friday came around, I knew Barry would be missing his usual Friday night beers with the boys from work, so I invited them round to the house instead. It didn’t matter that he wasn’t really with it anymore, they loved him and I knew that he would want them there. None of us predicted that he would be gone the next day. By the morning of 6th June 2015, Barry had deteriorated even more. It terrified me to see his hands and feet turning dark blue. I had been around dead people for years in my job and I knew at once he was close to death. I kissed him and told him I loved him, amazed to feel him squeeze my hand back. It was the last thing he did and by the afternoon, he had left this world… hopefully for a better one.
His boys came to take him away, carrying Barry out like he was a king and accompanying his coffin all the way back to Albins and Sons, the place he lived his life. They wanted to treat him right and Barry had naturally pre-planned his whole funeral, every perfect detail, beforehand. A horse-drawn carriage took his coffin to the Thames for a river boat journey to the chapel of rest. His funeral brought all Bermondsey out on to the streets to pay their respects. We needed TV screens to relay the church service to the crowds outside and even had a message of condolence from the Queen. There was so much love that came pouring out for him, so many cards, flowers and stories of how he had helped someone in their darkest hour.
Barry is buried, as he wished, with his parents in the Albin memorial garden. There’s a space for me next to him. A short time later, everyone who loved him received a letter from Barry. That was so like him, meticulous and organised as well as incredibly caring! My letter talked about the life we should have had to look forward to. He always knew, he wrote, that he wasn’t going to make it, but had done everything he could to put it to the back of his mind and live every day.
The house I live in now was supposed to be our retirement home together. It can be lonely sometimes, going from working together every day and caring for him, to this new house. The last two years of his life had been intense, a rollercoaster, and I had been on that ride with him. Now I was left without the most important person in my life. I couldn’t go back to Albin and Sons. People coming in need 100% and I can’t give them that anymore, so my whole life has changed. I see the children and grandchildren regularly, helping with some of the school runs and all that now I’m retired. Finding the charity Brain Tumour Research has helped me to find a new purpose as I now do fundraising events, like tea and cake gatherings, for them. No one talks about brain tumours really and if we can raise some money and save more people, then that’s what I want to do.
Every Saturday I go in to Bermondsey and do Barry’s flowers, like he would have wanted me to. He still comes first for me.
Brain tumours 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.
If you have been inspired by Barry’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via https://www.braintumourresearch.org/legacy
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.