Tuesday, June 25, 2024
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How I dealt with my brain tumour diagnosis

Chelsea Spencer, 30, was diagnosed with an incurable brain tumour when she was 26. She shares her story of resilience and has advice for those who are going through the same thing.

I found out about my brain tumour in 2018, when I was 26.

At the time I was living in London in a flatshare, and visiting my partner in Uckfield every weekend. I was beginning to feel increasingly tired and was experiencing headaches. I went back and forth to my GP who carried out ECGs and blood test which all came back clear.

Discovering a brain tumour

I was signed off work for a week due to stress and I went up to Staffordshire to stay with my family. My mum noticed that I had become quite irritable and short which was unlike me.

When I returned back to London that following weekend, when with my boyfriend, I had a seizure in the night. He called an ambulance and I was told at the hospital it was a one-off thing and nothing to worry about.

I then had another seizure, around two weeks later, again at my boyfriend’s in the night, and he called another ambulance. On this occasion, I was taken for a CT and MRI scan, which then led to the discovery of my tumour.

Surgery

I had debulking brain surgery in June 2018, followed by concurrent radiotherapy and chemotherapy for around six weeks. This was followed by 12 rounds of chemotherapy, five days out of every month.

I stopped working at this time. It almost felt like my life got put on pause. I was scared but determined to not let the tumour take over my life. I spent a lot of time at my family home and my mum and other family members were with me constantly, almost like I was a child again.

The Brain Tumour Charity became a go-to resource, providing information and making things clearer for me and my family. The website helped us understand more about my condition. My family and friends began fundraising for the charity once we learnt about the work that they did.

My tumour is now stable. I have MRI scans every five months and am having hormonal treatment as a result of my treatment. Overall, I am in a good place. I worry and I am more anxious than I used to be, but I am finding ways to manage this. Now I’m back at work full time as an employment coach for a charity.

My advice

If you have just found out you have a brain tumour, ask your medical team questions if there’s anything you don’t understand. I remember reading the word ‘palliative’ on my treatment plan and to me, this meant ‘end of life’. It terrified me, but when I asked my oncologist the word seemed less scary, as she explained that this meant the treatment wasn’t to cure but to manage my tumour which made the word far less terrifying.

Allow yourself to cry, this doesn’t mean you’re not coping. You’re allowed to feel what you want to.

Believe in yourself. You are capable of more than you give yourself credit for. I will never underestimate myself again, I am so proud of myself and my resilience. The Chelsea before brain cancer could have never imagined that she could go through this and come out the other side.

I do still have my ‘what if’ days but overall I am positive and believe in myself.

There is no right or wrong way to deal with a diagnosis so be kind to yourself. Try not to compare yourself to others.

It gets easier

For me, when I was first told that I had an incurable cancer, I couldn’t imagine how I would continue to live and enjoy things without it being on my mind constantly, worrying about the what-ifs.

But it does get easier. I don’t wake up every day and instantly think about it and I have days where I don’t think about it at all. That’s not to say that I don’t worry, I do but I’m still learning ways to manage that and find what works for me.

You’ve got this

If you have just been diagnosed with a brain tumour, you’ve got this!

My medical team at Brighton and Sussex University Hospitals have been outstanding, I couldn’t have wished for a more supportive and caring team.

My family and friends have been my armour and this journey has been a group effort. I can never thank everyone enough. I feel so lucky and privileged to have amazing people in my life.

Bex Bastable
Bex Bastablehttp://bexbastable.co.uk
Bex is a journalist and the co-founder of The Women's Work Collective.
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