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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Owen Copland

Owen Copland from Liverpool, Merseyside, was diagnosed with an aggressive brain tumour in November 2020. The 20-year-old drama student has since undergone surgery and radiotherapy to treat the disease but devastatingly, his latest scan results revealed significant progression and his family has been told his prognosis is extremely stark.

 

Owen’s mum Gill tells his story…

Owen was in his third year at Liverpool John Moores University (LJMU) studying Drama. He wanted to be a director and to star in his own films. He is a polite young man, who is a good listener; people always go to him for help and advice. He has never been a party-goer or tried to fit in with the crowd. He is an individual and has always just been him – never out to impress anyone. He has a great sense of humour, enjoys banter and having a laugh.

It was during the coronavirus lockdown in October 2020 when Owen started suffering with headaches. He wanted to come home from his student accommodation but he had to isolate for two weeks, due to a flatmate having tested positive for COVID-19.

When I picked Owen up after the two-week quarantine, he was feeling quite poorly and lethargic. When we got home, I ran him a bath and tried to offer him food but he seemed confused. I lay with him that night and gave him painkillers for his headache. The next morning, I tried to get a doctor’s appointment but struggled, due to the pandemic. I rang 111 and they advised me to take him to hospital. I took him to Aintree A&E but unfortunately, I wasn’t allowed to stay with him, so I waited in the car park.

After four hours sitting in A&E, they sent him home, having carried out no tests. I tried to question him to find out more but he was so tired and couldn’t explain what had happened. He just wanted to go home. Two days later, he was no better and after a restless night, I called 111 again and they arranged for an ambulance to come.  When the ambulance arrived, the paramedics were rude and dismissive and wouldn’t listen to me. I had made notes about Owen’s symptoms, thinking if they took him to hospital, they might be helpful for the doctors. They wouldn’t even look at my notes and asked me what it was that I wanted them to do for us. I said I just wanted them to care for him, test him and treat him.

 “They explained that they had cancer patients, road traffic accidents and people suffering with heart attacks to attend to. They advised me to take him to hospital myself, if I was concerned.”

Owen even apologised to them, which I found upsetting. I explained that he couldn’t sit in A&E for four hours again, so they told me to call our GP. I said that I couldn’t get through to the doctors. They asked Owen what was going on and why he wasn’t eating or drinking but Owen was just so confused. They did a memory test on him, which he failed but still they did nothing.

The next day Owen was still showing no signs of improvement, so I rang our GP’s out of hours number but couldn’t get through, so I tried a health practice and a nurse phoned me back and advised me to take Owen to A&E. Owen shook his head when I told him but I knew we had to go. Shortly after that, Owen collapsed and I dialled 999. I was hysterical; desperate for somebody to help. A first responder arrived and then an ambulance but they didn’t want to take him to hospital and advised us to take Owen to A&E ourselves. The paramedic didn’t listen to me. She made stupid generalisations about students breaking lockdown rules. I explained that he wasn’t like that. I said his eyes were rolling back but she didn’t seem concerned at all. I told her he’d been unconscious for about ten minutes but she refuted that too.  

 “I asked to speak to the other paramedic alone and told him that, after doing my own research, I feared he had a brain tumour.”

His advice was: “Don’t panic”. They left us alone to deal with Owen and we took him to A&E. I checked him in and explained his symptoms to the nurses and told them he was dehydrated. They told me that I couldn’t stay but I was happy that they were finally listening to me and felt Owen would be cared for. I rang two hours later for an update and they told me he was fine, had eaten something and he could come home. A nurse met us with Owen at the hospital entrance and told me to ring the GP the next day for a follow-up appointment. I asked if he could be scanned for a brain tumour but she said that it wouldn’t be routine, as such procedures could cause cancer further down the line. 

I spent the next week trying to get an appointment for Owen but still couldn’t get through to the GP practice. At one point, I went from number 17 in the queue to number two and after nearly two hours on hold, I put the phone down, as it was nearly 7pm and I knew the surgery was closed. When I finally got through the next morning, I was informed that the doctor had replied to Owen and they told me they couldn’t help him, as he self-harms. It turned out that when I requested an appointment previously, via an e-consult form, I’d accidentally completed an anxiety form. I’d filled in the form so frantically but nobody had told me I’d done the wrong one. I rang the mental health team but they said because it was physical, they couldn’t help. I was crying on the phone, saying no one will help and the lady on the other end was nice. She said present at A&E, insist I need to stay with him and book him in for a mental health assessment. That’s exactly what I did. I had to explain I was his carer and that I wouldn’t leave him.  A man on crutches came over and asked me if he could get us some water. As he patted me on my arm, I remember thinking he shouldn’t have touched me because of the risk of COVID but I was moved by his kindness, something none of the professionals had shown us up to that point. 

“When Owen was called, I spoke to the doctor and it felt like it was the first time somebody was listening. Owen was given a CT scan and diagnosed with a brain lesion.”

He was then transferred to the Walton Centre, where he was given an MRI scan, for a more detailed look. The results revealed he had a glioma in the temporal lobe, on the left side of his brain. It was decided he needed urgent surgery and a team of neurosurgeon consultants put together a plan to operate. The surgeon told me he was only operating on Owen because of his young age. Otherwise, he said, the tumour would have been deemed ‘inoperable’.

On 10 November 2020, Owen had a six-hour life-saving operation. Afterwards, we discovered that when the surgeon made the cut into Owen’s head, his brain popped out because of the intense build-up of pressure.

 “Not all of the tumour could be removed, as it had grown into normal brain tissue and removing this part would’ve caused irreparable brain damage.”

When the histology came back from the biopsy, it showed the tumour was a grade 4 glioblastoma multiforme (GBM) – the most aggressive type. 

After surgery, Owen recovered really quickly and was doing so well. After he was discharged from hospital and we returned home, we received more bad news from his histology, that the tumour could have spread via cerebral spinal fluid (CSF) to his spine. He had an MRI on his spine and two small spots were discovered, so it was decided Owen would need full brain and full spine radiotherapy.

Standard of Care for GBM is combined chemotherapy and radiotherapy but because Owen’s radiotherapy was so intense, he couldn’t have both concurrently. He received radiotherapy at The Clatterbridge Cancer Centre in Liverpool and seemed to cope really well with it. Half way through his treatment, Owen was given an MRI and we were told the tumour had grown back and a bigger area would need to be treated.

On 25 February 2021, Owen got a second opinion from consultant clinical oncologist Dr McBain at The Christie in Manchester. She was lovely but she and the clinical research nurse alongside her had the unenviable job of explaining to Owen just how stark things were looking. Owen came home with a renewed understanding of just how bad everything was, but he appreciated having been spoken to in such a kind manner.

“When he got into bed at home, he said to Sarah, his girlfriend of two years, that he wanted to marry her.”

The next day, Owen had an appointment at Clatterbridge, having had a four-week wait at the end of his radiotherapy before his chemo was due to start. He had been suffering with extreme fatigue and generally feeling unwell after his radiotherapy and we assumed it was delayed side effects from the treatment or the result of his steroids being reduced. When we got to Clatterbridge, it was decided that he was too tired and weak for his first chemo session on 26 February, so it was delayed by a week and he was sent home with an increased dose of steroids. The tiredness continued and the next night, Owen began vomiting and had diarrhoea.

In the morning we rang Clatterbridge and they advised us to call an out-of-hours doctor, who would be able to administer an anti-sickness injection. We rang 111 and they arranged for a doctor to come out but after several hours of waiting and more phone calls to chase it up, we ended up calling 999 and an ambulance came at around 6pm. He was taken in to A&E and luckily, they got him a bed straightaway. Later he was admitted to the acute medicine unit (AMU) and he was put on fluids and the next day, he was transferred to ward 22 – respiratory medicine.

Owen stayed in Aintree from 27 February until 2 March. He spent much of this time vomiting blood and retching. He hadn’t eaten properly for around a week. On top of that, he was coughing and hiccupping, which kept him awake through the night, so he was completely exhausted. Owen was given an MRI and we were told by two different doctors that he had mild hydrocephalus, which may have been causing the sickness. The good news was that there wasn’t much change to the tumour. We breathed a sigh of relief. A multi-disciplinary team (MDT) meeting was scheduled to take place on 4 March. Owen was desperate to be discharged and was relieved to be able to come home on 2 March, with a syringe driver for his anti-sickness medication.

“After being discharged, Owen’s heart rate became dangerously low and when the district nurses came out to the house, we explained our concerns.”

He also wasn’t eating or drinking and was sleeping all of the time. They said the doctor would come out the next day but Owen was feeling so poorly that he wanted to go into hospital. We took Owen to Clatterbridge on the 3rd as he was still sleeping and not feeling himself at home. When we arrived, Owen’s hands and feet were cold and his heart rate was 45 (it’s normally around 115). His blood pressure was very low too.

Two days later, on 5 March, Owen’s doctor came to speak to me and his sister Jane, following the MDT meeting the previous day.

 “We were told that half of his brain is full of tumour and is now pressing against his brain stem, causing his heart rate to drop. Devastatingly, they said death could be imminent, potentially within days.”

Later that day, we spoke to Owen ourselves and had to explain that he could have just days to live. He said: ‘It is what it is’ and just asked to come home and have his room decorated with posters of his favourite things. We didn’t have the heart to say to Owen that he may not have long enough to wait for deliveries, so his cousin Kieran printed off more than 100 photos to stick on his wall.

We have a Facebook page called Owen & Glioblastoma: Lets find a cure and an Instagram account Owen and glioblastoma, where updates about Owen’s journey are shared and where we are raising awareness of this terrible disease. Jane also messaged Owen’s course mate Suzie at LJMU, who set up a Facebook page called Keep Goin’ Owen, where she is asking for donations. On 12 March she held a fundraiser night via a live stream. So far, more than £8,700 has been raised on his GoFundMe page to help cover costs incurred by the family at this difficult time. It’s also helping to enable us to share precious quality time and make memories together. 

Earlier this month, Suzie messaged Abbey, another course mate of Owen’s, and within less than two hours we had a whole wedding planned for Monday 8 March. With the help of the palliative care nurses, we managed to get Owen home from Clatterbridge the day before. Owen and Sarah had a commitment ceremony, which was just wonderful. There was a live singer, makeup artists, hair dressers, room decorations, wedding favours, food, photographers, videographers, and flowers themed around Owen’s favourite colour, yellow. Owen’s best man Luke attended and with less than 24 hours’ notice, he prepared and delivered the most beautiful speech we've ever heard.

Last week we decorated Owen’s room the way he wanted and we are now looking for help and alternative treatments to prolong his precious life. Owen is staying positive and determined to enjoy every day and putting all his fight into this. I passionately believe there should be more funding into research for brain tumours. He and others who are suffering deserve this change to happen. While all cancers and illnesses are devastating, this is in a league of its own. It’s like wading through mud. 

  “Unlike other cancers this was something I’d never heard of; the awareness is just not there.”

I feel like Owen is on death row and I am just waiting for someone to come along and say he shouldn’t be there. I want him back without GBM; “Great Big Mess”.  Owen is a living angel; one of the purest people I have ever known.  Every day his strength amazes me.

 “Owen’s struggle for diagnosis was traumatic and I don’t want others to go through a similar experience. I thought that was hellish. Little did I know the worst was yet to come.”

I am scared and feel trapped in a nightmare. Owen tells me not to cry but I can’t help it; he is so young and it is so tragic. I know I mother him too much but I also know he wants me to. He’s beautiful and naive but also has an amazing outlook, saying ‘it is what it is’ and telling me we’ll deal with whatever this hideous disease throws our way.


Gill Copland
March 2021

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 historically 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 Owen’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy

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