How would you react if, at age 39, you were told you had a malignant brain tumor? And that you had 12-18 months to live? That’s what happened to Clare. This is her story.
Tell us a bit about yourself!
My name is Clare, I’m 39 years old and I live in Colchester in the UK. I’m married to James who is a security guard. I work as a Graphic Designer for a magazine publisher. Outside of work I like to spend time with friends and family, eat out, and go to the theatre.
How did you find out you had a brain tumour?
On the 17th December, 2015, I collapsed at work and had a seizure having had no previous medical history of them, even as a child. I stayed in the hospital for two weeks and have numerous tests – CT scans, MRI scans, a lumbar puncture, and blood tests. The doctors decided it was a one-off and I was sent home.
I told to come back in three months for an MRI. On the scan in August 2016 (unbeknownst to me) a tumour presented itself. I was called to a different hospital about 20 miles away that had overseen my treatment so far as it was a more specialized neurology hospital.
I saw a doctor there on 6th Oct 2016, was told I had a brain tumour but they couldn’t say what it was and I was booked in for surgery the following day.
How did feel when they gave you a prognosis of 12-18 months to live?
Initially I thought “How is this possible when I feel so well?” Then I thought “There is no way that is going to happen and I am going to do everything in my power to ensure that is not the case!” I’m still doing well 18 months later.
What sort of treatments have you tried?
I was put of a course of six weeks of daily radiotherapy and chemotherapy combined. After that, I received a monthly dose of just chemotherapy for six months. I finished this in June 2017.
Thankfully the chemotherapy treatment for brain tumours does not cause hair loss so other than a couple of patches I got from the radiotherapy this did not impact me too much. I had my hair cut very short as soon as I could, but my hair has always been really fast growing. I intended to grow my hair back but my short hair got such praise that I still have it today.
How did the people in your life react when they learned about your brain tumor?
I had ‘friends’ who were very unwilling to accommodate my needs with regards to when I could see them. When I was doing my radiotherapy I had to stay closer to the hospital and not be at home.
My husband was still working as and when he could, so my weekends at home were very precious and I was tired so unable to socialise much. I became very focused on my treatment and some people were unable to accept that.
At the same time, my husband and my sister were extremely supportive and I had a few friends who really came through for me. My sister had only lost her husband a month before I was diagnosed so it was doubly hard on her and I am so grateful.
What does life look like for you these days?
I feel like I have much more free time; I only work four days a week now. We spend less money on ’stuff’ and way more on experiences and try to encourage others to do the same. I try to eat more healthily, because although there are a lot of myths surrounding what you eat and cancer, a healthy body can only work to fight the disease more efficiently.
I’m under no illusion that this is going to continue forever but for now, while I am well and happy, I make plans to do things every month. I try to never put things off until we have more money or aren’t as busy and weirdly, I feel a bit freer knowing I probably don’t have to worry about pensions and mortgages and long term saving.
Of course I have “it’s not fair” days as I’m only 39, but these are fairly few and far between and usually if I’m tired or hungry!!
How have you navigated this with your husband?
He knows all my passwords and PIN numbers for bank stuff, but we’ve always been very transparent when it came to these things anyway. I’ve said I want him to find someone else but he’s very sensitive and refuses to acknowledge what could happen. I’m sure we will discuss this when the time comes.
What’s surprised you about this?
One thing that has surprised me the most is my own reaction to my diagnosis. Being diagnosed with cancer was always one of my greatest fears but once it happened I just became utterly determined to not let it beat me.
I was given a prognosis of 12-18 months as mine is quite aggressive, but 18 months in I feel the best I have in a long time. I really try to make the most of every day. I have no more further treatment planned other than my 3 monthly MRI scans and at my last 3 scans whats left of the tumour has shrunk a little.
What books, tools, websites, apps, etc have helped you get through this?
At this stage I try to not look at the internet too much but I got some info from the hospital which was helpful, from charities like The Brain Tumour Charity and Brain Tumour Research.
If we know someone who’s dealing with a serious health diagnosis, what can we do that’s the most helpful and supportive?
Practical things like offering to take them places like the supermarket (because of my tumour I can’t drive) and grocery shopping on the bus is a pain. Visit them, stay positive, don’t treat them like they are about to keel over is the best. Showing some understanding is key.
Thank you so much for sharing your story, Clare. Do you have any questions for her?