Colin Jamieson, of Emberton, Buckinghamshire, was diagnosed with two brain tumours, later identified as likely grade 1 subependymomas or ependymomas, in July 2018. For at least three years he had been suffering with headaches, sickness and tiredness, but these symptoms were attributed to migraines and him working long hours. It was only when he became violently sick, forgetful and unable to eat, drink or lift his head that he was sent to hospital and treated for severe hydrocephalus. The 59-year-old is now being monitored with regular scans having undergone two shunt surgeries, two debulking surgeries and radiotherapy. His wife, Antia, 45, has since been diagnosed with a meningioma, which is also being monitored.
Here is Colin’s story, as told by his wife Anita …
Colin’s memory is horrific, and he has trouble processing things as a result of his brain tumours. This, and the fact he lost his HGV driving licence, makes working too hard. He used to run his own transport company, where I also worked after having our daughter, Hollie, so having to shut that meant we were both out of work. My dad was also gravely ill at the height of Colin’s illness and tragically passed away in 2019. I now do the accounts for my mum, who is a farmer, which gives us some income.
“We have to live rather modestly but we appreciate what we have and that things could be worse, especially with me also having been diagnosed with a brain tumour.”
Colin used to work long hours. He would get up at 4am and wouldn’t get home until late at night. For years he suffered with tiredness and headaches accompanied by sickness, but this was attributed to migraines and him working such long hours. I also suffer from migraines and his symptoms were similar so we didn’t think too much of it, and they always wore off. He’d fall asleep as soon as he got home from work and wouldn’t pay attention to things I said, but I assumed he was just tired, distracted by his phone or not listening. He’d ask what we were having for dinner and I’d tell him, but he’d ask again shortly after.
“I think he was becoming forgetful and didn’t realise how bad he’d got.”
He had a major accident in January 2018 in which he severed his fingers and required multiple operations. It was after that I really noticed his symptoms, especially his forgetfulness, in part because he wasn’t working and I was around him more. It was during a hospital visit for treatment on his hand that he complained about his legs becoming heavy. I took him to the doctors so many times I lost count. It was obvious there was something wrong with him. He was sleeping all the time and, as he was having so much time off work, I knew his long hours weren’t to blame. He was also complaining of having heavy legs, saying he was really having to make an effort to pick them up as he walked.
“Things reached a breaking point when, in July 2018, his headaches became so bad he became violently sick and spent a week in bed.”
He couldn’t sit up because every time he did he was sick, and he couldn’t keep food or drink down. At one point I got the GP to visit him at home and she booked us an appointment at Milton Keynes Hospital. We were lucky enough to see a senior doctor who did push and pull tests on Colin. She noticed he had weakness on one side and sent him straight for a CT scan to check there was nothing going on that shouldn’t be.
Colin was really unwell in the waiting room because he was having to sit up. We found out later his tumours were so large they had blocked both his ventricles, putting increasing pressure on his brain by preventing cerebrospinal fluid (CSF) from draining. We were called into a room and told, very matter-of-factly, that Colin had two brain tumours.
“I had a million questions – could they be removed, were they cancerous? – but they said they couldn’t tell us anymore at that stage.”
Colin’s scans were sent to the John Radcliffe Hospital in Oxford and he was admitted whilst waiting for them to be reviewed. I didn’t want him going to Oxford without me because he was already so confused, so I stayed with him for many hours. Eventually I went home but I didn’t sleep. Instead I sat there wondering when they were going to call. It was the next morning when they said Colin needed to be blue-lighted to John Radcliffe. I rushed back and we were transferred as soon as I got there. We were taken straight to the neurology ward where we met Mr Plaha, a neurosurgeon who is now a professor. He had such a calming presence and made us feel more at ease even though we didn’t know what was going on.
Mr Plaha said Colin needed to have surgery to relieve the pressure on his brain and that they would also try to take a biopsy. An external ventricular shunt was fitted to the back of Colin’s head to allow excess CSF to drain into a collection bag. He needed time to learn to adjust to the new pressure, so the shunt was adjusted to ensure it didn’t drain too quickly. His walking was completely different, and I had to help him get up and showered and take him for walks for the two weeks he was recovering in hospital. Once the collected fluid ran clear instead of red or pink, the external bag was removed and the shunt was allowed to work by itself, draining into Colin’s abdomen.
“His biopsy was also not straightforward, with part of his skull having to be removed in the process.”
At the end of October 2018, Colin had debulking surgery, lasting around 10 hours, on one of his tumours. He had been scheduled to have it sooner but kept having cancellations because of emergencies and bed shortages. It went well and they debulked more than expected but Colin’s doctor told us he’d never seen tumours as large as his, in the location they were and with the characteristics they had. We knew they wouldn’t be able to fully remove them due to their location in the centre of Colin’s brain and the way they were wrapped around the nerves which control speech, memory and cognitive behaviour. Doing so would have left him with nothing to live for.
“As it is, Colin’s personality has massively changed as a result of everything he’s been through.”
He was always pretty easy-going but he now gets frustrated. At times Hollie and I have found it tricky because Colin gets cross if something doesn’t go his way. She’s only 12 and the two of them can bicker like children, leaving me having to tell them both off. Colin’s still loving and kind, but very different to the man I knew before.
The plan was to let Colin recover and then repeat the operation on the other side of his head. However, the decision was made, following several multidisciplinary team (MDT) meetings, to monitor his tumours instead. They wanted to make sure they were behaving as they expected because they weren’t able to give us a definitive diagnosis for his tumours - even after sending tissue collected during his biopsy to Germany for analysis. The results were the same, he likely has grade 1 subependymomas or ependymomas.
“Being left in the dark with no clear answer is tough and means no one really knows how to treat him because they don’t know what they’re dealing with."
Colin’s monitoring went on for about two years, first every three months and then every six. Then, in October 2021, we were given the devastating news his tumours were still growing. They decided to finally debulk the other side of Colin’s head, but the picture was much bleaker the second time around, and the risks much greater. Still, we were advised it was the best option and so went ahead with it, again after several cancellations. Other than a slight weakness in his left arm, which has got stronger over time, Colin didn’t experience any of the impairments I had been warned about, which was a huge relief. We left the hospital feeling hopeful about the future. Unfortunately, after comparing scans, it became apparent his tumours were still growing and it was thought radiotherapy could be his best chance.
After much deliberation, in March 2022, we decided to move forward with radiotherapy. The radiologist told us in the 30 years he had been practicing, he had never come across tumours like Colin’s and didn’t know if radiotherapy would work. However, in his professional opinion, he said he didn’t think we had anything to lose by giving it a go. Colin’s treatment took place over six weeks from April 2022 at the Churchill Hospital in Oxford. He experienced extreme fatigue and he did lose his hair, but he managed to work every day.
“We were warned, as time went on, Colin’s memory could get progressively worse as a result of radiotherapy, but we decided saving his life was more important than what might happen five or 10 years down the line.”
Sadly, in February 2023 Colin’s shunt became blocked and the pressure in his brain increased dramatically. I didn’t recognise what was happening because his symptoms were very different to before. His memory wasn’t great but we were used to that and he didn’t show signs of confusion or have horrendous headaches. I now know he was making mistakes at work, but I didn’t see how poorly he was because I wasn’t with him during the day.
“He was let go from one job and quickly got another, but he was sent home within a few weeks which is when I noticed a completely different Colin.”
He had been due to complete an online training course at home the next day, but alarm bells started ringing when, instead of getting ready, he kept asking me where his clothes were. Within 12 hours, he resembled a dementia patient. He had no idea how to do anything. His last scan had taken place at the Horton Hospital in Banbury, so I phoned and asked them to check it. I was really worried about leaving him and began ringing more numbers and leaving messages. Eventually, I spoke to a secretary at the Churchill who told me I was right to be concerned. She managed to get the recent scan from the Horton analysed and it was quickly discovered Colin had hydrocephalus once again. I was told to take him to A&E urgently and when we got to Milton Keynes, they were expecting us.
“I sat Colin down but couldn’t leave him because he was like a child and would just walk off.”
He must have asked where we were going 100 times on the way to the hospital. He was given a CT scan, which was sent to the John Radcliffe, and we were sent to wait in a bay in A&E, which was absolutely heaving. Every time I went to the toilet, I had to take Colin with me, and anytime he needed to go, I had to do the same. I get stress and hormone-induced migraines and it was at this point I got the worst one I’ve ever had. I began vomiting repeatedly and was crying but no one could give me anything because I wasn’t a patient.
Eventually, one of the medical staff agreed to stay with Colin whilst I got myself registered and, when I returned, I was given medication. Unfortunately, they didn’t have the tablets I was used to taking and instead gave me an injection which may as well have been a horse tranquiliser. I couldn’t wake myself up and was trying to pay attention to what everyone was saying but I didn’t have any idea where I was. I remember the blue lights coming on in the ambulance which transferred me and Colin to John Radcliffe but little else. Colin was taken to the neurology ward and I was collected and taken home. The hospital phoned the next day to tell me Colin had undergone surgery to have a new shunt fitted. He suffered tinnitus after that, which has only recently gone, and now has impaired hearing.
Despite initially being told Colin’s scans showed signs of growth and we were out of options, just a week later, in early March 2023, we were told his tumours might actually have stabilised and possibly even shrunk. We’re just hoping that is the case. His next appointment is in October so we’re staying positive and hopeful in the meantime.
“As bad luck would have it though, I’ve also been diagnosed with a brain tumour.”
I’ve suffered with migraines since I was about 13. I was even hospitalised with them when I was under the care of Bedford Hospital. I’ve lived with them my whole life. They make me violently sick and I become so sensitive to noise that I have to go straight to bed. After having lost my dad, and with Colin needing more surgery in September 2018, my migraines got very bad, and I became really stressed. I went to the doctor to ask if there was anything else she could give me for them or anything else I could do. She referred me to a migraine specialist at Northampton Hospital to make sure they hadn’t missed anything and he booked me in for an MRI. I had the scan two weeks later, thinking they weren’t going to find anything, and just days later learned they had.
“I found out about my tumour after receiving a letter stating there had been an ‘incidental finding of meningioma brain tumour’.”
I had no one in front of me to answer questions or explain the finding and was really worried after everything we’d been through with Colin, so I rang my doctor. He explained my tumour was only 3cm in diameter, perfectly round and at the back of my skull so, if it did ever need to be operated on, I was in a good position. This reassured me somewhat. I suffered a uterine prolapse after having Hollie and knew I wouldn’t be able to have another baby. So, when I found out my tumour was caused by hormones, I decided, with the agreement of medical professionals, to have a hysterectomy. I had this in February 2019 and was then able to go on hormone replacement therapy (HRT) using just oestrogen.
“Since having my hysterectomy and using HRT, my migraines have improved massively.”
I’ve weaned myself off amitriptyline and although I still take zolmitriptan tablets, I now only take one when needed. My migraines aren’t as frequent as before, and I no longer have to go to bed because of them. I had one last week but I know it was because I was overtired. I have a bulging disc in my neck that keeps me awake sometimes and I put pressure on it driving a long-distance. Before that I hadn’t had a migraine for at least two months.
I was being monitored every six months but I now have scans just once every two years. As I already had contact with Professor Plaha, I was able to discuss my case with him. I’m now under his care and Colin and I go for joint scans, which saves us time and money. Mine is slow-growing and hasn’t changed since 2018, which I take as a good sign. In the beginning, I was shocked, really scared for our daughter and extremely angry. It seemed so unfair that Colin and I would both be affected by this disease, but I’ve now learned to accept it. I’m relieved Colin is still here and, although some days are better than others, I try to remain grateful for what we have now. We could have been in a very different position and my heart breaks for all those who are.
“I feel very strongly about the need for increased investment in research into brain tumours.”
I find it disgusting that just 1% has been allocated from the national spend on cancer research since records began, despite it being the biggest cancer killer of children and adults under 40. It’s a horrific cancer, a truly debilitating one which robs people of who they are. I want others to understand the indiscriminate nature of this disease. It doesn’t matter who you are, or if you are related or known to someone with a brain tumour. I used to wonder what the chances were of two people getting together and having brain tumour diagnoses but actually I imagine it’s quite high. This is why raising awareness of the disease, supporting fundraisers like Wear A Hat Day and promoting the Brain Tumour Research petition for more funding are so important to us.
Anita Jamieson
August 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 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 inspired by Colin'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
Together we will find a cure.