Chantal’s story
Chantal’s journey begins with a sudden and frightening tonic-clonic seizure, propelling her into a whirlwind of medical tests and a life-altering diagnosis. Despite facing this daunting journey amidst the challenges of a global pandemic, Chantal’s resilience shines through.
A life-altering event
On Sunday 31 May 2020, I had a full tonic-clonic seizure during the night. My husband Andy was unable to wake me and the first thing that I knew about it was seeing paramedics in the bedroom.
I suffered three more seizures that night, one in the ambulance and a further two in A&E.
The following morning I was taken down for an MRI scan.
Occurring amid the Covid lockdown, I suddenly found myself facing a hospital stay, tests, appointments and the diagnosis on my own, with Andy unable to be there in support.
The diagnosis
The scan showed a brain tumour in the left frontal part of my brain, the area which controls speech, coordination and memory.
Read more about managing a brain tumour diagnosis
Awake craniotomy and recovery
Chantal had 52 staples in her head following her awake craniotomy
The treatment was to be an awake craniotomy – surgery to remove the tumour under local anaesthetic rather than general in order to avoid brain damage.
Once a date was set for surgery I faced a week of self-isolation and a Covid test. Then on 10 August, the operation went ahead, lasting seven and a half hours with a further three hours in recovery.
Andy and our two daughters had an anxious wait at home and, being unable to visit the hospital due to COVID-19, news for them had to come from the surgeon via phone.
90% of the tumour had been removed, and radiotherapy and chemotherapy would follow to subdue the last 10%. After surgery, I made a good recovery and was allowed home after just three days.
Find out more about brain tumour surgery
Enduring treatment: Radiotherapy and chemotherapy
Chantal with her radiotherapy mask after the final session.
The biopsy of the tumour showed it to be an oligodendroglioma, grade 2, a slow-growing tumour but likely to return and one which can also change grades.
As a result, I will be under the neurology department forever so that any growth or change can be acted on straight away.
Following my surgery, I had 30 sessions of radiotherapy Monday-Friday, over six weeks. This involved tiring daily travelling and the loss of a lot of my hair.
When radiotherapy finished at the end of November, I had a break in treatment over Christmas to relax and give my body a rest before the start of PCV chemotherapy.
Chemotherapy involves six cycles with each cycle lasting six weeks, so it was a lengthy process up to September 2021.
Find out more about brain tumour treatments
Coping with challenges
Losing my hair after radiotherapy was a big shock.
I found the hair loss to be the most traumatic out of all of this treatment. I loved my hair and I didn’t realise the amount of hair I would lose. It really came as a shock. They tell you at the beginning that there will be hair loss and kind of give you a rough area and I assumed I would be able to hide it, how wrong was I!
Chantal recorded her hair loss and regrowth
I cut my hair into a short bob, just to have some kind of control. I went down to washing my hair once a week and towel drying it only. During the first week of radiotherapy, my head felt like ants constantly running across my head. It was such a horrible sensation, this was obviously my hair follicles.
My hair started to fall out around the three-week mark, exactly what I had been told would happen and it never stopped until January. I remember the first time a clump came out and just sitting and crying. I was losing hair rapidly and not once did I pull my hair, I just had to touch it and it would be in my hands.
I kept the pictures as a record of the rapid hair loss, and also to show the positive side of how much it’s grown back in a short space of time.
Find out more about the side effects of treatment
Raising awareness
Andy and I are now determined to raise awareness of brain tumours and encourage people to look out for symptoms.
I had struggled to sleep for so many years, I used to wake having night sweats and assumed I was going through an early menopause. I had been to the doctors numerous times as I didn’t feel right, but couldn’t explain my symptoms. Each time I would have a blood test and it would come back that I had a Vitamin D deficiency and low in magnesium. In the past, I was offered anti-depressants, which I didn’t take as I knew I wasn’t, not in the sense that the doctor thought. I assumed I was exhausted because of working in a stressful job as well as coming home to my own family. I just thought it was the norm of being a working mum and I needed to get on with it.
I remember times when I lost the strength on my left-hand side, and I’d wake with a fuzzy head like I’d been drinking. But again I pushed it to one side as I assumed it was lack of sleep. I was only managing a few hours each night. Three weeks before the seizure, I lost my balance in the garden and tripped over ‘nothing’, I hurt both of my feet and could hardly walk. And on the day of the seizure, I said things that were just nonsensical – I knew what I wanted to say but it wouldn’t come out right. Thinking back there were so many possible symptoms, too many to list here.
It was actually a relief once I was diagnosed as I realised that I wasn’t going mad and there was a reason, just not the reason I was expecting, or wanted.
Day-to-day impact
We also want to highlight the impact that a brain tumour and resulting treatment can have.
This is the reality of day to day living with a brain tumour. From my very first seizure, I had to surrender my driving licence. I lost my independence straight away and have had to rely on Andy to drive me everywhere. I’m on seizure tablets twice a day, which I’ll probably be on for the rest of my life.
As much as I look well, I find conversations can be draining and I get fatigued quite a lot. My concentration levels and energy can be very low, just normal family life with our daughters can be exhausting. I sometimes struggle to find the right word and need time to find it myself. I feel like I need a badge to let people know that I do struggle to process information and it’s not me being ‘thick’.
There are some days where I’m able to multitask and these are good, but other days, if I manage one thing then I’m proud of that. I’m still not sleeping brilliantly and there’s a fine line between overstimulation and understimulation, which I’m still trying to manage. I’m only six months post-surgery so hopefully all of the above will get easier, but it can be incredibly frustrating. It is a hidden illness. I look fine but I’m not really.
However I have to get on, my girls depend on me. And this last year has taught me to not waste time and challenge myself more as you never know what’s around the corner. Life is blooming precious.
Chantal Davies | October 2021
Embracing life’s precious moments
Chantal’s journey underscores the fragility of life and the importance of cherishing every moment, inspiring others to embrace resilience and face adversity with courage.
Join the cause
Stand with Chantal and Andy in their mission to raise awareness and support those affected by brain tumours. Together, we can make a difference.
Explore resources and get involved
Chantal and Andy’s fundraising challenge 2024
Chantal, Andy and friends completed the Bristol 10K 2021
Since my diagnosis I’ve decided to push myself out of my comfort zone and what better way than to do this and raise lots of money. We are not runners but this is our challenge and we are determined to complete this race.
To raise awareness and funds for Brain Tumour Support, Chantal and Andy, along with four of their friends, took on the Great Bristol 10K in 2021.
Chantal and Andy will be participating again in the A J Bell Great Bristol Run 10K on 19 May 2024.
You can support Chantal and Andy on the link below:
Support Chantal and Andy’s Bristol 10K