In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Lee Patterson, from Whitley Bay, was 51 when he died from a brain tumour in November 2020, after a very short battle with the disease. Lee, the head of a large sixth form college in North Tyneside, left behind his beloved wife Kathy and their three sons William, 23, Thomas, 22 and Michael, 20.
Lee’s widow Kathy tells his story…
Lee was a wonderful husband and father, who brought so much joy to all of our lives. We celebrated our 25th wedding anniversary a few months before he died. He was a very good golfer, who had a low handicap and enjoyed getting out on the golf course as much as he could. He was head of Queen Alexandra Sixth Form College in Wallsend and did a marvellous job. He touched the lives of so many of his pupils and colleagues in his long and successful career. He had a razor-sharp wit, was sociable and so much fun; always up for a party. We loved walking together and enjoyed many special breaks at our caravan in the Lake District. He loved life and lived it to the full. Losing him is just heartbreaking.
It all started on August bank holiday weekend 2020. Lee had been out with friends on the Friday night. He’d had very little to drink because, he said, ‘it wasn’t going down well’. When he came home, he was talking to me normally and then he started slurring his words, so I questioned whether he’d definitely only had a couple of pints but he insisted they’d only been to a couple of bars and that he wasn’t drunk. We went to bed and the following morning, Lee woke up feeling really unwell, as if he had a hangover.
“Later that day, he started being sick and he continued to vomit profusely for the rest of the weekend. We thought it must have been a stomach bug.”
On the Tuesday he was still feeling really poorly, so he went to have a bath to try to relax but afterwards he came downstairs and said he really didn’t feel right. We went to bed and at around midnight, he woke up saying his head was spinning and his heart was racing. I rang 111 and after a telephone assessment, they sent an ambulance, which came at 2.00am. The paramedics performed an ECG. They said his heartbeat was irregular and that he was presenting as very anxious. His right arm and leg were twitching and he was dizzy. They were telling him to calm down and to try and control his breathing, thinking he had suffered a panic attack. Lee said he was going to be sick and as he tried to get up, he was very wobbly on his feet.
He was taken to Northumbria Specialist Emergency Care Hospital in Cramlington and because of the coronavirus restrictions, I couldn’t go with him. He spent around five hours in A&E and was eventually told he was OK and could go home. I went to collect him at 7.30 that morning. He was given no medication and no discharge letter. We went home and tried to catch up on some sleep but Lee continued to be sick and had excruciating headaches. He couldn’t keep anything down, including paracetamol. Later that day, I rang the doctor and explained what had been going on.
“Lee was diagnosed with vertigo and was prescribed sea-sickness tablets. Again, he couldn’t stomach the medication and continued to be sick constantly.”
I rang the doctor every other day. Lee was getting no better. They tried him on a different medication for seasickness and a few days later they asked him to come in, to have the medication delivered by an injection, as he was still vomiting all the time. The injection seemed to work and he was feeling a bit better for a couple of days, well enough for us to get out on our bikes for a ride along the seafront. When the medication wore off, however, his condition worsened and he started being sick again. We just couldn’t understand it.
I made more phone calls to the doctor and he was given another injection but things just weren’t improving. I work as a higher level teaching assistant (HLTA) at Whitley Lodge First School, near to where we live. One Wednesday lunchtime, I popped home to check on Lee, as he had been vomiting all morning. He was waiting for a call from the doctor but by this point, he was confused and was struggling to remember things, so I intervened and spoke to them myself.
“The doctor advised me to take him into hospital for a brain scan. He called the hospital and spoke to a consultant, to tell them we were coming.”
When we arrived at the ambulatory care unit, I couldn’t go onto the ward with Lee, as there were strict COVID-19 restrictions in place. Lee had to sit on his own, with a vomit dish, waiting for several hours to be seen. He was confused. Eventually, a registrar came to see him and did some tests, which suggested he hadn’t had a stroke, so she sent him home. I couldn’t believe that they hadn’t carried out the brain scan he’d been sent there to have.
The following day, Lee’s symptoms were the same. I got on to the doctor again and we both went in to see him. Like me, he was really surprised that Lee hadn’t been scanned. He gave him another injection and told us to get in touch immediately if he got worse. Lee’s condition didn’t improve and a few days later, I noticed just how poorly he was looking. He appeared older and would frown a lot. He was becoming quieter. He was tired all the time and didn’t want to get out of bed. He wasn’t eating or drinking.
On one occasion in mid-September, Lee joined us at the table at teatime and as we were chatting, I noticed his face had completely glazed over and he wasn’t making any sense. His parents happened to call in and I told them I was really worried about him. He had a vacant expression on his face. His dad spoke to him and asked what day it was, which he answered correctly. He then asked how many brothers he had and Lee said, ‘two’ when in actual fact he only has one brother. He was also being sick again. I tried to call 111 but couldn’t get through. My father-in-law offered to take us straight to A&E.
Lee managed to walk from the house to the car but by the time we arrived at hospital 15 minutes later, he couldn’t walk or get out of the car unaided. We got him a wheelchair and we were fast-tracked to see a triage nurse. Lee couldn’t keep his eyes open. He was twitching and leaning over to the left.
“Lee was sent for a CT scan and a short while later they came back and told me he’d had a bleed on the brain. They said they would need to do a second scan before sending him to Royal Victoria Infirmary (RVI) in Newcastle.”
I said goodbye to him before he was put into an induced coma and transferred to the RVI. I couldn’t go with him in the ambulance, as he had to be accompanied by a neurology doctor. Lee’s parents came to pick me up and we arrived in the centre of Newcastle at around 5.00am. When I arrived, they told me they were expecting me and it was at that point that I knew it was bad news. They sat me down and brought me a cup of tea. I’d only just drank it, when a nurse came back in and told me that Lee was in theatre. It was a shock, as I had no idea he was going in for an operation. I went up to intensive care, where I waited for him to come out of theatre.
When he came out, I was able to spend half an hour with him. A lovely male nurse called Harry was with him and explained Lee had had a drain fitted to relieve the pressure in his brain. He talked me through what he was doing and reassured me that all the wires and machines bleeping were nothing to be alarmed about. I was encouraged to go home and get some rest and told that a consultant would ring me later on.
I went home and tried to get some sleep. Later that day, the consultant rang and asked for the whole family to come in to talk to him at 8.30am the following day, Friday 18 September 2020. Our eldest son William was living in Manchester at the time. As we were waiting to find out if the country was about to go back into lockdown, I called William and suggested he came home so he could visit his dad before the restrictions tightened again. I didn’t want to worry him before he got in the car to travel three hours on his own. When he arrived, I explained that Lee was in intensive care and that he had a bleed on the brain. The four of us and Lee’s parents headed into hospital the following morning, dreading what they were going to tell us.
“We couldn’t have predicted just how bad the news was going to be. The consultant sat us down and explained that Lee had a large, aggressive glioblastoma multiforme (GBM) brain tumour, the size of a fist.”
He said that it was too late to operate to remove it and that there were no other treatment options available. They thought the tumour could have been there for nine to 12 months. Most tragically of all, he wasn’t expected to survive the weekend.
We couldn’t believe it. Lee was a very fit 51-year-old man. He ate healthily, didn’t smoke and only drank socially. He wasn’t overweight; he ran, cycled and went to the gym. He was always out walking and looked after himself. It seemed so unjust and so cruel.
Lee stayed on the intensive care ward for five days. After that, they brought him out of a coma and took his drain out. He was moved onto ward 16, the adult neurosurgical ward. It was very hard for my sons, as they were only allowed to visit on their own, for an hour at a time. I could visit more often but always on my own and wearing full PPE, which included an apron, surgical gloves and a mask. I hated it. I really didn’t want Lee to see me for the last time wearing a mask. Lee’s parents weren’t able to go in and see him at all. He was brain-damaged and remained unreponsive most of the time but he outlived his initial prognosis. For about ten days in October, he was more alert. During that time, Lee was able to be helped out of bed and into a wheelchair, which meant I could take him off the ward and outside to see his mum and dad.
“Having initially been told he wouldn’t survive more than 48 hours, Lee’s physical fitness meant that he was fighting hard and hanging on.”
It was suggested that Lee should be moved into a nursing home. This would have meant him self-isolating for two weeks after he moved, even with a negative COVID test result. If he was going to be self-isolating for two weeks, he wouldn’t have been allowed any visitors whatsoever during that period. After the isolation, only I would’ve been able to visit for one hour at a time. The boys wouldn’t have been able to visit until he was “actively dying”. There was no way I could allow this to happen because they couldn’t guarantee that he would live longer than a couple of days, so I insisted he stayed where he was.
Talking became increasingly difficult for Lee but he was able to write messages down and we communicated that way. He knew he had staples in his head and he knew that he was in hospital but when the palliative care nurses asked if he wanted to know why he was there he replied, ‘no’. I don’t think he fully understood that he was dying from a brain tumour.
Towards the end of October, there was a noticeable change in Lee’s condition and I had a feeling that he didn’t have long left. I asked the nurses what to expect when he came to the end of his life and when it happened, it was exactly as they’d described. I came in early on the morning of 9 November, having spent all weekend with Lee, and I could see he’d really changed overnight. At that point, the ward staff said the boys could come in to see him whenever they wanted and I knew what that meant.
The three of them came in together that afternoon. That night, I asked the staff nurse if I should go home and she said I was welcome to stay, so I went home to get an overnight bag and came back to spend the night by Lee’s side. It was the best night’s sleep I’d had in such a long time, as I was next to Lee and I could hear him breathing. The following day, it was so obvious he was nearing the end. The boys came in late morning and we all sat round his bed, listening to BBC Radio 2 and chatting non-stop. One of our sons suggested we did a quiz, which we did, and although Lee was completely unresponsive, we laughed and joked with him, talking to him as if he was there with us.
“Lee died at 7.30pm that evening. He took three big deep breaths before he slipped away. We were talking to him and telling him we loved him throughout.”
The nursing staff were excellent. Some of them were crying as well. He was quite a character, who’d obviously made a big impression on them, as he did everyone he met. He had a wonderful sense of humour and everyone thought he was lovely.
I have nothing but praise for all of the doctors and nurses on ward 16, who were brilliant. My regret is the misdiagnosis. It seems so unfair that the last few weeks of Lee’s life were snatched away from us, while he was suffering so much and we were desperately trying to get a diagnosis. On the other hand, I sometimes wonder how Lee would’ve coped had he known about his brain tumour. I think he would have been a terrible patient!
In December, our family friend Katherine Davis, raised more than £2,000 for Brain Tumour Research by taking part in a daily North Sea dip for 31 consecutive days. It was so touching that she chose to fundraise in Lee’s honour. I am also beginning to pursue fundraising activities, as I try to come to terms with our terrible loss. I am back at work and our school will be taking part in the charity’s Wear a Hat Day on Friday 26 March. Queen Alexandra Sixth Form College will be getting involved too. Lee leaves behind a fantastic legacy and I know the college is also interested in establishing a student award in his honour.
“Since Lee’s death, we have been overwhelmed by the outpouring of love for him. His online funeral notice page includes hordes of messages from friends, colleagues and pupils past and present.”
They describe his warm, caring nature and his great sense of humour. People will remember his smile, his kindness and the fact he was always the last one off the dance floor at family parties! I feel so lucky to have been his wife and to have so many wonderful memories of him, which I will cherish forever.
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.
Together we will find a cure.