It has been a while, but I’m super excited to share a new interview here on the blog. I think you guys will find it such an interesting and inspiring read.
Chantal Smits is 23 and from Vauxhall, London. She has worked in the field of neurosurgery (developing patient pathways and care plans) for several years. Reading a HeadSmart poster in an NHS waiting room led to a life-changing diagnosis.
With the similarities too strong to ignore, Chantal sought advice from her GP about the symptoms she’d been experiencing for some time. The MRI scan that followed revealed a Grade 2 i
Management so far has been via ‘watch and wait’ – radiotherapy and chemotherapy are options should the tumour grow, but are likely to have significant side-effects due to the location.
What led to your diagnosis?
I’ve worked in the NHS since I was 18 as an Anaesthetic Practitioner, starting at Great Ormond Street and then, since January 2018, at St George’s.
I’ve always had headaches and extreme fatigue but blamed it on the demands of the job!
There were a few things that happened that made me think something was up: I crossed a busy road in Camden and just saw the road come up to my face; I had literally walked into the floor. Another time, whilst on the bus, I couldn’t shake the sensation that someone was pouring water down one side of my face.
However, because these things could be put down to extreme tiredness, dehydration and being overworked, I trusted that that was all it was!
In my job I focus on Brain Tumour Surgical Care Plans and Pathways but not diagnosis; so in a way I was never going to suspect my own fate as I simply didn’t know the symptoms. I just knew something wasn’t right.
It wasn’t until I saw a HeadSmart Poster that listed symptoms of brain tumours in children that a lot of them added up to my experience.
Finally, I went to my GP and unravelled the last five years events. Because it was so specific and detailed he could send me for a non-urgent MRI – you have to meet the criteria to be offered one these days.
We all expected it to rule out anything suspicious!!! But there it was – the tumour – clear as day, and totally unreachable above my Brainstem.
This March will be my one year anniversary and I’ve achieved so much already. If anything, I believe it’s helped me find my purpose and passion and I see myself fundraising, advocating and forming partnerships around brain tumours until I no longer can!
In January, I became a Young Ambassador for The Brain Tumour Charity which is definitely my biggest achievement!
How has it affected you?
At the beginning I found it very difficult to accept because I’m so aware of the severity of something like this – after all, it’s my day job.
I honestly thought I’d have weeks to live and I’d deteriorate very quickly or the tumour would grow really quickly and I’d die in my sleep because I was inoperable.
It was all a bit of a living nightmare for me as I truly see the sickest of the sick at work and I didn’t know how to quantify my own experience. I only had my Clinical Nurse Specialist and The Brain Tumour Charity for factually correct resources and emotional support.
My parents were as supportive as they could be but, it’s too hard to know what to do in this situation. They stuck to practical solutions and we sorted out my finances and Power of Attorney.
My boyfriend has remained positive throughout, even when his Aunt died from a brain tumour after I was diagnosed. He’s my biggest cheerleader and always knows exactly what to do and say.
Taking time out
I decided to go on holiday with two of my oldest best friends for ten days and just forget about it, I needed time and space to accept my new normal and come to terms with it. Stressing will not make it easier!
This is where I realised that I’d been chosen by a higher power to go through this, I was chosen to set an example to others or my patients and be a driving force in finding a cure.
I work closely with my Clinical Nurse Specialists already so my new focus is fundraising and finding a cure.
As soon as I came back from my holiday in August I started my Positivity-Only blog called Lobe Yourself and my attitude and perceptions did a 180.
What’s life like now?
Normal for me is still a bit of a mix but I’ve learnt to ride the incredible highs and the lowest of lows in the same way.
I still work in neurosurgery, doing exactly the same role; it’s hard to know I’m inoperable but it makes me a much more empathetic practitioner.
I’ve chosen to change my shifts from 12.5 hour days to 8 hours to try and tackle my fatigue this year, this will also mean my evening meal can be a healthy cooked meal instead of a microwaved one in the hospital.
It’s become important to put myself first and listen to my body.
Where do you turn for support? What helps?
I am part of some really great Facebook support groups which is where I found out I’m not the only inoperable incurable patient. So they’re quite reassuring when I have worries and questions – it’s always nice to know there are people out there forty years down the line from where you are now and they’re thriving!
Other than that,
Chantal’s top tips for other girls in the brain tumour club
- Take some time to return to who you were previous to your diagnosis, despite what you’ve been through YOU are still here.
- Don’t push away friends and family who are trying to help you; they don’t know how to help you unless you guide them.
- Make time to pamper yourself and don’t feel guilty when others want to make a fuss of you.
- Don’t compare your journey to anyone else’s; every brain tumour patient is rewriting the history books!
Are you living with a brain tumour?
What are your top tips be for others? Comment below so I can share, and please give this post a like!