Five missed calls
“It was September 2021 when my life took an unexpected turn. At 54 and living on my own, I’d been battling crippling headaches since the July. When I finally made an appointment to see my GP, the news wasn’t encouraging – a referral to a neurologist came with a staggering six-month wait.
Thankfully, I had joined a private healthcare scheme eight years previously, so I contacted them and got an appointment at the Spire Clinic in Cardiff within two months.
At the appointment, the neurologist tested my reflexes and balance, and I was told that everything looked ok. However, as a matter of caution he booked me in for an MRI Scan.
A week later, in November 2021, I casually attended the scan with no apprehensions as my mind was at rest. The day after the scan I noticed I had five missed calls from the Spire Clinic. I called them back and they asked if I could go for a repeat scan that week, only this would be a contrast scan.
I asked them if I should be concerned and they said no, sometimes second scans are required to ensure everything is seen. I went to the second scan on Friday 18 November and on the Monday, a nurse phone me to say that the results had come back and I needed to speak to the neurologist.
The following day, I logged off for lunch – I’d been working from home for three years – and collected my post. In it was a letter from the neurologist which only had a few lines at first glance. Little did I know those few lines would change my life forever.
Jayne
The letter
It read: “Dear Jayne, I wanted to let you know the results of your MRI Scan. A mass was picked up on the right side of the brain. I have referred your case to the Multi-disciplinary Oncology team in Cardiff and your case will be discussed on Monday. Please don’t hesitate to contact me.”
That was it. A mass! Immediately, I contacted my uncle who was a retired GP and told him my news. It was then that the words “Brain Tumour” became real. As naïve as it sounds, I never thought of it as a tumour.
In tears, I called the neurologist who said that he did think twice about posting the letter. However, as I wasn’t local, he wanted to let me know as soon as he could. He also explained about the different types/grades of brain tumour and progression. I had a low grade oligodendroglioma.
From that minute on I wrote myself off. Daily routines that once brought joy – like my online shopping habit – suddenly felt meaningless. I was tearful and withdrew, only sharing my diagnosis with one family member, my manager, and a trusted friend.
My colleagues at the DVLA, where I’ve worked for more than 20 years, were – and still are – supportive and amazing. I also told my closest friend who put a message on the WhatsApp chat for our close friends.
I wrote myself off
I’d never encountered anyone with a brain tumour before. All I did for the next few days was look around my home and at my two cats and wonder how much longer I would be able to do that.
Would I be here this time next year? I asked myself. Every hour of every day it was all I could think of. In addition, I made a Will and planned my funeral.
The specialist nurse contacted me on 7 December confirming an appointment with the MDT team on 10 Dec. My uncle – my rock! – took me to the appointment for support as my mum died eight years ago and my dad wasn’t well.
As I entered the room there were two nurses. The neurosurgeon, oncologist, brain surgeon and psychologist were all on video links. The neurosurgeon fired questions at me so I told him about the headaches.
I also said: ‘I know this sounds stupid, but I’ve had these bizarre episodes of deafness and left-sided numbness for a couple of years. They only last a minute. My GP told me it was a middle ear infection.”
His answer: ‘That’s not stupid. Those are seizures.”
He asked what I understood by the word tumour, and then asked if I was still driving. When I said I was, he said: “That stops today!”
Just like that… in three words my independence gone!
Then he told me that the tumour had no high-grade features on the MRI scans. The team thought they could remove 90 to 92% of it, and I could have radiotherapy/chemotherapy for the rest.
Opting for surgery
But he said surgery was my choice. I also had the option to leave it, but he said they didn’t know how it would behave. There was only one option in my opinion… surgery.
Two months later, on February 24, I was admitted to the Intensive Care Unit at The Heath Hospital in Cardiff at 5pm in readiness for surgery the next day.
Nurses, doctors and anaesthetists were going back and fore until midnight, firing questions and taking bloods and doing all sorts of tests. I was told I was due to be first down the following morning at 7am.
When that time came, strangely enough, I wasn’t nervous. My aunt called me at 6am asking me how I felt, and she sounded more nervous.
The porters and nurses took me to the operating theatre and I thought to myself, this is it! The last thing I remember was the anaesthetist saying: “The good stuff is going in now Jayne!”
Eight hours later I woke in recovery, confused and slurring answers to the nurses’ questions. My aunt was there and told me the neurosurgeon had called her while she was on the way to the hospital and he screamed: “WE GOT IT ALL!”
Jayne Ashman
I was told the anaesthetist had asked me to squeeze her hand after the op, so I did, and there was an ecstatic look on her face and she said: “Well done Jayne! Well done!”
Recovery by watching rugby
The following day, I woke and had breakfast and drifted in and out of sleep until lunch. Then I reached for my iPad and asked the nurses for the Wi-Fi password because Wales were playing England in the Six Nations. I hadn’t missed a game in years!
After a couple of days in the High Dependency Unit and two more scans, I had regular cognitive tests. They asked me the day, the date, location and my reason for being in hospital. My answers were spot on and I was allowed to go home on Sunday 27 Feb.
Recovery meant lots of rest, keeping my mind active when I was awake and taking regular painkillers. I also limited visitors to save my energy and watched my diet. Two months went by, then I was at my first post-surgery meeting with the multi-disciplinary team.
They asked me how my speech was and whether I had noticed any loss of movement on my left side. Then they asked me to move my hands and legs, and the neurosurgeon showed me the post- op scan. He pointed to the screen and said this is the vacuum left by the tumour. Then he pointed to a little round, white shadow and said: “This is where you suffered the stroke.”
I was dumbfounded, lost for words and couldn’t take my eyes off the screen. Bewildered, I said: “I had a stroke?”
The neurosurgeon said yes but added that it didn’t seem to have affected me. I just couldn’t believe what I had been told.
After that, I found out I’d need scans to check for any changes every six months due to my age. This was a condition for life.
When I returned home, I called my aunt who had been there while I recovered from the op. She reminded me of the moment the anaesthetist asked me to squeeze her hand. That’s what it had been about.
Grateful for every single day
With that in mind, it hit home how lucky I had been and am! It has totally changed my outlook on life. I am grateful for every single day, and to have had a fantastic MDT Team!
Jayne
Two years on, I was back to work and my fourth post-op meeting with the team showed no changes or evidence of regrowth. I will now have annual scans. I’m living proof that we can come through it. Mindset is everything. Diet and exercise are key and the most important thing – never give up! Always look for the positive.
Tumour humour!
Two things I look back at make me laugh. Firstly, before my op I always knew when seizures were starting because I would hear the same song in my head. Of all the songs it could have been, dare I admit it, it was Justin Bieber’s ‘Baby!’ I’m not even a JB fan. So embarrassing! It gave the nurses a good laugh though. (Sorry Justin!)
Secondly, I joined one of The Brain Tumour Charity’s private online support groups to get some advice on what to take into hospital. Someone responded to my post saying that he was newly diagnosed too and was due to have his surgery 10 days before mine.
We were both really positive and discussed our expectations of what surgery would involve. We concluded that the surgeon would take a slice off the top of the head, then a grabber – like the one in an amusement arcade – would be strategically guided into place by the surgeon to try and grab the tumour! Of course, the theatre staff would be guiding him shouting ‘left a bit, right a bit’ and then the surgeon would shout: “Put another 50p in the slot please!”
We howled laughing at this. After his surgery he decided to name his tumour Gordon, so that he had something to say goodbye to. I followed suit and named mine ‘Gladys the Glioma’. Goodbye Gladys!”