We are grateful to Vicki who worked with us in February 2021 to share her story here. Sadly, she passed away in June 2021. We remember Vicki as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.
Educational and child psychologist and mum-of-two Vicki Meredew, from Clitheroe in Lancashire, was diagnosed with a right optical diffuse glioblastoma multiforme (GBM) in August 2019, 14 months after she became symptomatic with visual seizures. Her tumour is grade 4, carrying with it a stark prognosis of just 12-18 months. However, Vicki, who is now medically retired, is outliving her prognosis and refuses to be defined by her terminal diagnosis. She walks five miles a day, cycles and lives a full and happy life.
Vicki tells her story…
It all started on a Thursday in June 2018 when I was working from home trying to get a report finished. I got up from my desk to go to the loo and as I did, I became dizzy and could see flashing lights. What I thought had been caused by getting up too quickly, turned out to be the first of many visual seizures I would experience. Over the weekend, the flashing lights kept coming, so on the Monday I attended a walk-in centre at Accrington Victoria Hospital, where I was advised to make an appointment with my optician. I went to Specsavers in Blackburn and the optician found an abnormality, so I was referred to the emergency eye ward at Burnley General Hospital. Before that appointment came through, my visual symptoms were worsening, so on 5 July I went to see my GP and she chased up my hospital appointment.
Three days later I saw an eye surgeon, who did some scans of my eyes.
“I was diagnosed with posterior vitreous detachment (PVD), a condition where your vitreous (gel-like fluid) comes away from the retina at the back of your eye.”
The condition was put down to general wear and tear and getting older so no treatment was prescribed. I had a follow-up at Burnley General Hospital on 20 July and was told that the symptoms were nothing to worry about and would settle in time. The following month I had an ophthalmology appointment at Airedale General Hospital in Skipton. The medic I saw was quite dismissive, saying no ocular abnormality had been identified and I was discharged back to my GP.
That summer I went on a cycling holiday to France, touring the country with my husband and our two children. I felt well but was still having visual seizures and I was feeling a little more tired than usual. When we came back, I noticed that I was bumping into things a lot. On one occasion, I was sweeping the kitchen floor when I trod on the dustpan because I couldn’t see it. I realised it was because something was still wrong with my vision, so I went back to see my GP. She agreed that something just wasn’t right and she advised me to see my optician again. I saw the optician, who identified left inferior quadrantanopia, an anopia affecting a quarter of the field of vision. I was referred to see an ophthalmologist at Royal Preston Hospital. I was seen at the hospital on 12 September and they referred me for an urgent MRI within a fortnight. They also advised me to stop driving, since it was becoming clear I was suffering from some kind of neurological vision loss.
“They suggested the symptoms could be caused by scar tissue from an old brain injury. As I was generally fit and well, they didn’t seem too worried and neither was I.”
On 15 Sept 2018 I had an MRI scan in a mobile unit at Chorley District Hospital. Afterwards, they said the images weren’t clear enough, so I was asked to go to Royal Preston for another scan the following month. In between the two scans, I had a strange incident where I was cycling home from work and got lost just a couple of miles from my house. I had no idea where I was and I had to read the road signs to find my way, even though it was a journey I did frequently. I completely lost my bearings. I was beginning to realise that there was something seriously wrong with my visual and spatial mapping and it felt quite scary.
My second set of scans were on 10 October 2018 and lasted two-and-a-half hours. When they injected contrast dye into my arm, to try to get some clearer pictures, I began to think that they had found something. I went back to work that afternoon and I was in a meeting when I received a phone call asking me to go back in to see the consultant ophthalmologist, at 8.30am the following day. They tried to reassure me that it was nothing to worry about and that the urgency was because he was going on annual leave but I had a gut feeling that it was bad news. My husband came with me and we sat down with the ophthalmologist, who showed us my scan images on the screen. It was obvious from the pictures that there was something in my brain that shouldn’t have been there but he said to me: ‘don’t worry, you’re in the right place’. I think it was difficult for him, as he wasn’t in a position to give a diagnosis and he couldn’t explain what it was. He said that the scan results had been discussed with his neuro-ophthalmologist colleague and that my case was going to a multi-disciplinary team (MDT) meeting.
“The strange thing was that everyone was expecting me to be really ill but generally, other than tiredness, I still felt fine.”
I came away from that meeting feeling worried and confused. I wasn’t really sure what an ‘MDT meeting’ was and so I went back to my GP surgery. The doctor I saw explained what everything meant and it was really comforting and reassuring. The following Monday 15 October I got another phone call from the hospital while I was at work. This time they were asking me to come in within an hour-and-a-half, to be admitted. Again, I was told not to panic but it was hard not to. A colleague drove me straight there and when I arrived, I was put through lots of tests, including an x-ray of my chest. Then it was decided I needed a lumbar puncture, to relieve some of the pressure that had built up on my brain. That made me quite poorly; I felt really sick, dizzy and tired. It took two or three days to recover. They gave me an anti-epilepsy medication called levetiracetam, initially 250mg, increasing to 500mg twice daily. Luckily, the medication worked well, but I was kept in for four days for observations.
“I had permission to leave the ward, so my husband brought the kids in to see me and we went to the café. I told them I had an eye problem, as I didn’t want to worry them too much.”
I was desperate to get home, especially as my son had just started secondary school and I wanted to be there to support him. Eventually, I was discharged on 18 October and was given a letter to go to the neurosurgeon’s clinic the next week, where they would organise a biopsy. When I turned up for that appointment on 23 October, I was shocked to discover it was actually a neuro-oncology clinic. At this point, I still wasn’t aware that I had a tumour. The neurosurgeon I saw was brilliant; he took time to show us every scan image and said it looked like a tumour but not like anything he had seen before. He said that it wasn’t behaving like an aggressive tumour but an appointment was made for a biopsy to be taken from my occipital lobe, to find out more about the growth.
My biopsy was on 25 October. It wasn’t until after the operation that I discovered it was a locum neurosurgeon who had carried out the procedure and not the surgeon I had spoken to before. I saw him briefly when I was in recovery and I asked him if he got the sample he needed. He said he would come and see me on the ward but he never did and I was discharged the next day, with steroids prescribed to take for the next two weeks. I was called in to discuss my histology results on 8 November and the neurosurgeon told me that it was ‘good news’, as there were no signs of lymphoma or cancer and therefore neurosurgery involvement was no longer required. The plan, he said, was to refer me back to the neurology team at Royal Blackburn Hospital. An appointment had already been booked for the following month but I requested to stay under the care of the neurologist at Preston instead. It made sense to me to stay at Preston, as they had my full history having seen me since the beginning of my symptoms. Luckily, they agreed.
Later that day, however, I received a telephone call from the neuro-oncology nurse, who said that the professor looking after me had queried my discharge from neurosurgery and further MRI scans were arranged. It was during those scans, on 19 November, that concerns were raised that the biopsy was not a representative sample. They had accidentally taken healthy tissue instead of tumour during my biopsy. Further scans, including a spectroscopy, were arranged for February 2019, with a follow-up appointment in March to discuss a further biopsy. At that point, they were quite sure that it was likely to be a low-grade tumour. On 4 December, I had another appointment with the neurologist; he increased my anti-seizure medication to 750mg twice daily and told me not to go back to work.
“As I was feeling well and my vision had improved, I stubbornly refused to give up work but I think, with hindsight, he was trying to tell me he thought it was quite serious.”
On 12 February I had another MRI scan and spectroscopy. My follow-up appointment to discuss the results was on 5 March. It turned out to be with a different neurosurgeon – the fifth one I’d seen. He said that a biopsy would not be necessary, as there was enough information from the spectroscopy to suggest it was a low-grade tumour. He offered a limited resection of the affected area. I was confused, as I said I had previously been told that it was extensive and diffuse and that it couldn’t be operated on. We discussed the possible risks and benefits of surgery and I decided not to opt for an operation, as it seemed inconsistent with previous advice. A few days later, I received a letter from the neurosurgeon, which stated that my results were “suggestive of the possibility of a low-grade glioma”.
To me, this sounded like the surgeon was hedging his bets. I used to be an expert witness in tribunals and my experience told me that the wording here was too uncertain. I really wasn’t happy. I rang the charity brainstrust and was invited to a meet-up group, where I talked about getting a second opinion.
After discussing my situation with brainstrust, I decided to be seen privately at the National Hospital for Neurology and Neurosurgery in Queen’s Square, London. I went to stay with a friend in London and she came with me to my appointment on 30 April. I was seen by a consultant neurosurgeon, who looked at my scan images and said he really wasn’t sure about the diagnosis either and he advised me to have a biopsy. I had a perfusion scan in Queen’s Square on 14 June and on 5 August I had the biopsy. I was reassured that this time, they had definitely got the right bit. It was a completely different experience and I felt like I was in the best possible hands.
On 21 August 2019 I went back for the histology results and I was told I had a diffuse glioblastoma multiforme (GBM). It was a huge shock. Since my seizures were being treated, I’d felt well. My husband was sitting next to me when we received the news and he was asking lots of questions about what it meant.
“They said they didn’t know the prognosis but that it looked relatively stable and they explained that I could be treated with radiotherapy and chemotherapy. John was visibly upset. We went for some lunch and discussed what we would tell the kids.”
I was transferred back to Preston for my cancer treatment, as there seemed to be no benefit travelling such a long distance for that treatment. I had an appointment with my oncologist at The Cancer Centre at Royal Preston Hospital on 9 September and started radiotherapy and chemotherapy on 30 September 2019. The radiotherapy was targeting a really large area of my brain and so the side effects I suffered were quite significant. I was exhausted all the time and had to drink constantly. I didn’t take my anti-sickness tablets one day and I was really ill. My father-in-law would drive me the 32-mile round trip for my radiotherapy, which lasted six weeks, and I would often fall asleep in the car.
When the country locked down at the beginning of the coronavirus pandemic in March 2020, my chemotherapy treatment was temporarily stopped. It was a case of assessing the risk of going into hospital and contracting the virus with my weakened immune system, versus the risk of my tumour progressing during a hiatus in my treatment. It was decided that the risk of contracting COVID-19 was greater and so my chemo stopped for a few weeks. It was explained to me that it was relatively normal for patients to have a break in their treatment and I didn’t feel too anxious about it. Thankfully, I was able to resume my treatment two months later and completed the course.
“My post-treatment scan in August 2020 revealed that the tumour had shrunk slightly and I was asked to go back for another scan three months later.”
I had my next scan in November and received the results on 7 December. Unfortunately, they showed some definite change, which is being treated as progression. The way they described it to me was that my tumour is like a ‘web’ and the ‘threads’ of the web have thickened. It came as a real blow. I felt well and hadn’t noticed any difference to my symptoms, so I was expecting it to be stable. I was given the option of going back for another scan in six weeks’ time, or a further course of chemo. I opted for more chemotherapy, this time Lomustine, which I was due to start just after Christmas. However, when the COVID-19 infection rates were going through the roof, I contacted my oncologist and asked if I could revert to the scan option, to reduce my risk of catching the virus. She was really supportive and sympathetic and agreed that I should wait and have another scan in six weeks’ time instead.
I had another scan on 1 February and am waiting to start my chemo. In the meantime, I have had my COVID vaccine, which is a huge relief. I continue to feel really well. I walk five miles every day and maintain a good level of fitness. Although I’m fine with exercise, I find it hard to cope with environments such as the supermarket, where I get visual overload, so I avoid shopping as much as I can. The children are now aged 13 and 14 and are gradually coming to terms with what my diagnosis might mean.
“We’ve had more discussions about what progression could look like and have started planning for the future. Their schools are aware of the situation and have both been really supportive.”
When you tell people you’ve got a terminal brain tumour, the reaction is normally quite gloomy. The way I deal with my diagnosis, is by bringing good humour to the situation. You have to laugh. I’ve found solace from reading Adam Blaine’s books, in which he shares his heartfelt account of his experience of brain cancer. I’ve also found it really helpful to connect with other brain tumour patients online. There is an amazingly supportive community on Twitter and I enjoy talking to other people who are going through the same, unique experiences. It feels like a privilege to be welcomed into such a special group of people, even though it's a group none of us ever wanted to belong to.
“If anything, I feel like I’m getting better, not worse, although I am realistic about what the future is likely to hold.”
While I feel well, I am devoting some of my time to voluntary work. Working alongside brainstrust, I have commissioned some research into supporting young brain tumour patients when they return to school after a period of absence. There is quite a lot of research out there about children with acquired brain injuries but not so much about brain tumours and how children’s education can be supported while they recover from treatment for the disease.
I've sometimes wondered whether my calmness in response to my diagnosis is somehow a side effect of my brain tumour but I think it really is just a sense of clarity and a desire to get on with life as much as possible. I'm not able to cycle as regularly as I’d like to, especially since there has been a lot of ice and storm debris on the road recently and I have to take extra care with my peripheral vision loss. I do, however, get out on my bike when I can and I walk every day. I refuse to be defined by my brain cancer and will continue to enjoy life and to make the most of it for as long as I can.
Vicki Meredew
February 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.
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