Chantal and Andy, with their two daughters aged twelve and thirteen, were like everyone in the UK getting on with a new pattern of living due to lockdown in the Spring of 2020. But their life was to change for a different reason, suddenly and dramatically at the end of May.
This is Chantal’s story.
On Sunday 31st May 2020 Chantal had a full tonic-clonic seizure during the night. Her husband Andy was unable to wake her and the first thing that she knew about it was seeing paramedics in the bedroom. Chantal suffered three more seizures that night, one in the ambulance and a further two in A&E. The following morning she was taken down for an MRI scan.
Occurring in the midst of the Covid lockdown, Chantal suddenly found herself facing a hospital stay, tests, appointments and the diagnosis on her own, with Andy unable to be there in support.
Chantal and Andy, 3 weeks after Chantal's surgery
Diagnosis and an awake craniotomy
The scan showed a brain tumour in the left frontal part of her brain, the area which controls speech, coordination and memory. 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 Chantal faced a week of self-isolation and a Covid test. Then on August 10th the operation went ahead, lasting 7 1/2 hours with a further 3 hours in recovery.
Andy and their two daughters had an anxious wait at home and, being unable to visit the hospital due to Covid, 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 Chantal made a very good recovery and was allowed home after just three days.
From the awake craniotomy Chantal had 52 staples
Radiotherapy and chemo
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 Chantal will be under the neurology department forever so that any growth or change can be acted on straight away.
Following her surgery Chantal had 30 sessions of radiotherapy Monday-Friday, over six weeks. This involved tiring daily travelling and the loss of a lot of her hair.
When radiotherapy finished at the end of November, she had a break in treatment over Christmas to relax and give her body a rest before the start of PCV chemotherapy. Chemo involves six cycles with each cycle lasting six weeks, so a lengthy process up to September 2021.
The upset of hair loss
Chantal with her radiotherapy mask after her final session
Chantal recalls the shock of losing her hair after radiotherapy.
"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!
"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 3 week mark, exactly what I had been told would happen and it never stopped until the 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."
The hair loss due to radiotherapy upset Chantal most, but it is re-growing well
Awareness of symptoms
Chantal and Andy are now determined to raise awareness of brain tumours and encourage people to look out for symptoms.
Looking back Chantal recalls, “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 really 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 just assumed it was lack of sleep. I was only managing on a few hours each night. Three weeks prior to 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
They also want to highlight the impact that a brain tumour and resulting treatment can have.
Chantal says “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 and healthy, 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 days, 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 of over stimulation and under stimulation, 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 really 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 and Andy’s fundraising challenge
To raise awareness and funds for Brain Tumour Support, Chantal and Andy, along with four of their friends, have signed up to run the Bristol 10K on September 19th, not long after Chantal completes her chemotherapy sessions.
“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.”
Read more about how we help
Brain Tumour Support offers support to brain tumour patients and their families in a variety of ways - support groups, one-to-one, counselling, telephone and on-line support.
For more information call our Support Line on 01454 422701 or email firstname.lastname@example.org