Brain Tumour Awareness Month: Rachel

Brain Tumour Awareness Month: Rachel's story

Thu 09 March

Our supporter Rachel Emery shares her story of being diagnosed with a brain tumour in 2018.
Our supporter Rachel, from Halifax, was diagnosed with a brain tumour in June 2018, and had a full craniotomy in September 2018.
For Brain Tumour Awareness Month, Rachel has shared her story with us to help raise vital awareness and funds for our support and research:
Starting from the beginning
In May 2018, I was working as a Healthcare Assistant (HCA) in the maternity outpatients ward at Dewsbury Hospital.
I started having headaches in the left side of my head which were getting worse and more often. I took paracetamol, but one day at work I got stabbing sharp pains on the top left of my head. A work mate asked if I was ok as the left side of my face, under my eye, looked a little different.
Eventually I saw my GP who referred me for a scan. I was told there was a difference on my left side, but that it was nothing “sinister”.
But one day after work in June I went to another CT scan, and at the end the radiographer looked like he had seen a ghost. He advised me to go to A&E.
They told me they had found a lesion, and referred me to Mr Corns.
I saw Mr Corns in July, who advised that I had surgery possibly in September. I had an MRI in August and found out that the tumour was fast-growing and was in my skull bone and the optic bone area around my left eye.
We set a date for the operation in September 2018. Two weeks before the operation, I got double vision in my left eye when I looked left and got really dizzy.
I had a full craniotomy/cranioplasty and now have an alloplastic replacement skull. I stayed in hospital for three weeks. At first, my speech was like a toddler’s, but after the third week in hospital it came back.
I was then off sick for a year from work, and took a career break. By October 2022 I was medically retired from my job as I wasn’t well enough to work, as after my operation I lost all sight in my left eye. My eye moves around and looks like it works but I can’t see, so I’m partially sighted. I tried to enjoy life as best I could at home.

Rachel following her operation in 2018
After my operation
My son went to Japan a month after my operation, my youngest was already living in Scotland and my eldest daughter moved to Scotland too. It was just myself, our dogs and my husband at home.
We took the decision to sell our council home and move to a caravan in Scotland in June 2021, hoping for a better, quieter life. Just before we moved, unbelievably I gained my driving license back, with limits including no driving in the dark.
Life in Scotland was ok, but I missed all the support I had in Yorkshire, my friends and my youngest daughter who had moved back to Yorkshire.
I missed a few appointments as my husband and daughter were working, it was too far to go by bus, and I could only drive short distances at certain times. I also really struggle with fatigue.
I made the decision to come back to Yorkshire in July 2022, staying with my daughter for around five months. I struggled going out on my own because of my vision. I wear a lanyard because I’m more clumsy and bump into things.

Finding out about YBTC
After my initial diagnosis in 2018 I saw nurse Laura, part of Mr Corns’ team, and she gave me a few leaflets, including one about YBTC.
I got counselling and attended the charity’s Leeds support group, as well as the Christmas meal. The charity also gave me financial help. When I was in Scotland I missed the Christmas meal, but I went last Christmas and it was lovely.
Since Covid the charity has expanded and now there are Drop-in Cafés in different areas where I can go to get support and have a cuppa and a chat. I also go along to wellbeing walks which really help my mental health.
I’ve even raised some money for the charity by fundraising and knitted some yellow ribbons as part of the Yarny Army. I’d like to try a skydive or a zipline in the future.
Through YBTC I’ve made new friends. YBTC and everything they do to help me is so important. I’m proud to be involved with them. For me, YBTC is amazing, supportive and I feel accepted and no judgement.

Rachel at the YBTC Christmas party
Going forward
I had an MRI scan in Scotland in November 2021 and had a phone call from Dr Demetriades to say it was all clear.
After an MRI scan in November 2022, I saw Mr Corns on 12th January this year. Unfortunately he gave me the least expected news, that they had found another similar grape-size meningioma. It’s on the same left side, but in a more central position on top of the head bone.
Sadly, Mr Corns cannot operate because of the positioning, so he has referred me to Dr Flatley in oncology to discuss radiotherapy. I've decided to start radiotherapy for nearly 6 weeks, then I'll have a follow-up scan after 6 months.
In the appointment, it felt like they were talking to someone else so I forgot to ask a lot of questions.
I was on a progesterone mini pill, and they advised me not to take it as hormones can aid the growth of a tumour. I’ve been on a mini pill for over 7 years and wonder if I’d stopped the pill, maybe my tumour might not have grown so big… we’ll never know.

Rachel's scan, November 2022
How I’m doing now
I’ve started to accept how I am now. I have difficulty concentrating, I’m clumsy, I get dizzy, I have ear discomfort, I get headaches and pressure in my head. I struggle going out and about and crossing the road, so just take my time and don’t go out on my own in the evening. My mental health has changed and my personality is slightly different, I’m more impulsive and I laugh more.
But regardless, life is precious and you should enjoy it as best you can.

This image sums up how Rachel feels now:

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To read more Brain Tumour Awareness Month stories, click here.
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