Roger Duke, from Gray’s, Essex, was diagnosed with cancer of the oesophagus at the end of 2021 and only discovered he had a secondary brain tumour in January 2022. The keen woodworker had been suffering from seizures affecting his right arm, which were initially misdiagnosed as muscle cramps. Sadly, his brain tumour was inoperable but he had been due to start radiotherapy shortly after he suffered a brain bleed from which he never recovered. The grandfather-of-two died in March 2022, just six weeks after diagnosis, aged 72.
Here is Roger’s story, as told by his wife Jackie …
When I met Roger I was 15 and what attracted me to him most was his humour. We didn’t row in the 54 years we knew each other and we supported one another through good and bad times. He helped me through the death of my parents in my 20s, we lost a child at full-term, when I also nearly died, and our daughter Heidi had to have heart surgery for a leaky valve at age 11. But we were always happy in each other’s company and even during lockdown, we never got on each other’s nerves. His death is a huge loss for me.
“He was taken too soon and the trauma of what happened continues to feel so raw that I still can’t believe he’s gone.”
It was late October 2021 when Rog turned to me and said ‘I’m getting a blockage, I can’t swallow properly’. I told him he needed to go and get checked out and that it could be something simple like reflux. He was never one for phoning the doctor but he did on this occasion and was referred for a gastroscopy the following week. When Basildon University Hospital called asking me to come in to speak to the doctor, I was in bits because a friend of ours had died having the same procedure and I thought something terrible had happened to Roger. Thankfully, he was fine but we were given the devastating news he had oesophageal cancer. It was strange because I’m usually the one to ask lots of questions but I found myself unable to speak. I don’t think I wanted to know how serious it was. Rog was given scans to check if the cancer had spread but none of these were of his head.
“This plays on my mind all the time because it’s possible, if they’d scanned his head then, he’d still be alive today.”
Just before Christmas, Rog had another appointment at Basildon. The consultant was quite positive about his outlook and said he could go to the Chelmsford and Essex Hospital to have his blockage removed, that it was just like removing a pipe. He said there were some lesions but he wasn’t concerned about them. Nevertheless, he sent Roger for an MRI scan, which he had at Southend Hospital in January. The next day he started getting what we now know to be a seizure in his arm. It was horrible to watch. He already had a telephone appointment with our doctor and was told to get in touch if it happened again. He had five that same day but getting past a receptionist at our doctor’s surgery at that time was near-impossible so I phoned 111. A doctor told me to pick up a prescription for what they presumed was muscle cramp. Sadly, it wasn’t. Rog was having seizures every day so eventually I took him to A&E where they did blood tests and said everything looked fine. They didn’t give him an MRI as he was already due to have one but, when we went back for another blood test, a doctor managed to arrange one for us. We were the last to be seen that day but a nurse told Rog he may need to be admitted.
“I could see him start to cry, which I’d only seen once before, when we lost our baby.”
When we were sent through to the doctor, we were shown an image of the cancer on Roger’s brain and the bleed that was causing his seizures. We were in there a while but eventually the doctor phoned A&E to tell them what drugs Rog needed and what dosage. Despite this, when we got there, we were forced to take a ticket and wait to be triaged. I thought that was disgusting after being told Rog had cancer on his brain and, whilst we were waiting in a room full of people, he had another seizure.
“It was terrifying but a security guard saw what was happening and told a nurse who arrived with a wheelchair to take Rog to A&E.”
Rog was in hospital for four days during which time the National Hospital for Neurology and Neurosurgery in Queen’s Square, London, reviewed his scans and confirmed his tumour was inoperable. When I picked him up and brought him home, Rog said a doctor on the ward had told him he had just three, or possibly six months, to live. What an awful thing to tell someone when they’re on their own. That weekend we told our two daughters, which was horrific.
“I couldn’t even bring myself to ask the doctor we saw in outpatients if the time Rog had been given was with or without treatment.”
He was transferred to St Bartholomew's Hospital, London, for radiotherapy to treat his brain tumour. I went with him to have his mask fitted, which was awful and made me feel incredibly claustrophobic. Roger’s sessions were due to start on 8 March but, sadly, he collapsed and suffered a massive brain bleed six days before – the same day my dad died on 48 years ago. Roger’s right side went completely. I phoned for an ambulance and called our daughter Michelle. When she arrived, she helped me get him into a chair and straightened his leg, which he didn’t know was bent. I sat next to him as he gradually lost his speech and as soon as he stopped being able to talk, the paramedic present changed our call to a category 1 and an ambulance arrived.
“The last time Rog saw us properly was in that ambulance because I don’t think he regained consciousness after that.”
I got a call in the early hours of the morning to ask what medication Rog had taken that day. I didn’t hear anything else until the following morning when I was told Rog had indicated he didn’t want to be resuscitated if anything happened. We had previously spoken about becoming incapacitated and not wanting to live a life of complete dependency, so this wasn’t a shock, but what I failed to ask is how they communicated with him. I was told I’d be able to visit when Rog was moved to a ward, which happened the next day. In the meantime, I got a call from a Macmillan nurse asking for my permission to administer pain relief in Roger’s foot, which of course I agreed to.
I went to the hospital expecting to find my husband awake in bed because no one had prepared me for anything else. I would have expected someone to take me to one side and warn me how bad he was. Instead, I walked in with a pack of biscuits and a DVD player and found him unconscious. I held his hand and think he knew I was there but I’d never seen him like that, with his right eye completely closed and his left only partially open. I spoke to the doctor because, if Rog was going to die, I didn’t want it to be in a hospital and we’d already been in contact with St Luke’s Hospice, in Basildon.
“The man in that bed didn’t resemble my husband but I was assured he was still being treated and needed to stay put.”
By my next visit, Rog had been moved to a different ward and his breathing was awful. There were no machines or drips so it was clear he wasn’t being treated and was in fact on end-of-life care. I very nearly collapsed and didn’t feel I could stay, so I collected some of his things and left. The next day I returned with my daughter Heidi holding my hand. A nurse told us we could stay if we wanted, however long, and that Michelle could join us, so there we all stayed until he died 22 hours later. Heidi talked to Rog non-stop and we played music. We thought he might respond to songs he liked but it was after playing relaxing music on YouTube that his body seemed to relax. Michelle and Heidi held his hands and he took a deep breath. I went to the top of the bed and said ‘what’s it we say to each other at night? Night, night, sleep tight, pleasant dreams’ and with that he died.
“I think he finally felt at peace because seconds later he took his last breath.”
It was all such an enormous shock for us. Rog was a talented woodworker who used his hands to make things every day until his brain tumour took that from him. He was so creative with wood, despite never being professionally taught, that I still look at some of his creations and think ‘how did you make that?’ He was a big strapping bloke of about 6ft 2in and to see him lying helpless in a hospital bed was horrific. He was part of me, part of my life.
“I could never have imagined how much losing him would hurt, but I know I’ve got to get on with life for the sake of my children and grandchildren.”
Despite Roger’s cancer starting in his oesophagus, it was the tumour in his brain that killed him. Since losing him I’ve learned about the little funding that goes towards researching the disease and it’s infuriating. If Roger’s brain had been scanned earlier, it’s possible his tumour could have been treated. I never knew how widespread brain tumours were and I certainly never thought my husband would get one. There needs to be more research in order to find better, less invasive treatments and to ensure earlier diagnosis for patients.
“Rog was only 72, but he had been retired for 16 years after working for Ford for more than 40; I’m so grateful we had that time to travel and make memories.”
Jackie Duke
November 2023
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.
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