Natasha Morgan, 28, works for a health charity and lives in London. She was diagnosed with a brain tumour 18 months ago.
The first ‘symptoms’ Natasha experienced would eventually be identified as a seizure. At the time though, they were thought to be indicative of a panic attack since tests conducted at A&E came back normal. On advice to visit the GP, further appointments with a neurologist were made and an EEG and MRI scan followed. This would help to identify that the seizure had been caused by an Oligodendroglioma in the right motor cortex area of Natasha’s brain.
Read on to hear her honest account of her experiences, including learning to be more open, and the importance of friends and family.
What led to your diagnosis?
I was diagnosed 18 months ago when I was 27. One Sunday morning, in that weird phase between being asleep and awake, I felt a terrible cramp in my left leg. It creeped up into my arm and then spread over to my right side. I couldn’t move. I remember screaming for my partner, Rich, and next thing I knew he was standing over me, on the phone to the ambulance. For reasons I still don’t fully understand, the operator decided that as I was now responsive, there was no need to send an ambulance. Instead, we were advised to go to A&E.
At A&E I had all the usual blood checks and cables attached to me and a pregnancy test (the longest 15 minutes of my life!) but everything came back normal. I was sent home with instructions to see my GP, who said it’s probably fine but I should see a neurologist just to be sure. The neurologist said it was probably just a panic attack, but sent me for an EEG and an MRI anyway. When I got the call inviting me to see the neurologist again, I should have suspected something was up, but it didn’t even cross my mind.
My mum must have known though as she insisted on coming to the appointment with me even though I decided that I was finally grown-up enough to do these kinds of things alone.
And good thing she did. The neurologist explained gently that what I had experienced was a seizure. He then turned his screen round and showed me the image of my brain, with a big fuzzy area on one side. I can’t remember his exact words, but thankfully it wasn’t as blunt as “you have a brain tumour”. It was more like “something is going on here and it looks to me like a tumour”.
How has your diagnosis affected you?
Since diagnosis, it’s been a bit of an emotional roller-coaster. Initially, I was just sad. The first few weeks I could have a fairly normal day, then my mind would wander and I’d cry for a while. The most difficult period was before my 3 months’ scan which would reveal how quickly the tumour was growing. I literally couldn’t consider anything beyond the scan date and had to take each day as it came, doing whatever I needed to do to get through it. Thankfully the scan showed no growth, and since then there have been more and more good days with some darker times thrown in for good measure. But now I feel much more balanced and only really get upset occasionally. My biggest anxiety day-to-day is that I might have a seizure. I find myself planning what I would do if it happened; who looks like the most helpful stranger on the train? Would they stop the play if I had a seizure in the 5th row of the theatre?
Socially, I have learnt to become a bit more selfish and be less swayed by social obligation. We often have friends round to our house and almost always I go to bed before people leave. I’ve severely cut down on drinking but still feel the need (and want) to have the odd glass. What I have found most difficult is telling people about my condition for the first time.
When people casually ask “how are you?”, you can’t just chime in with “I have a brain tumour”. It feels like I’m burdening other people if I tell them. It shines a spotlight on me which I usually don’t want, and forces them to express something more than small talk. Plus, when they hear the words “brain tumour” they assume I’m dying, which (I hope) isn’t the case. The problem is if I reply with the standard “I’m OK, how are you?”, it feels like I’m lying.
I want people to know about my condition because I feel anxious and uneasy until I tell them. I need them to know that if I act strangely they might understand why, and if I have a seizure they could help me.
I’m fortunate in that I haven’t been affected too much physically. Up to now, I have had a seizure every 3 months or so. I have to rest for the few days following each one and find that my left leg feels a little weak for a while after. I also get tingly sensations sometimes down my leg from the base of my spine which makes me fidgety, and occasionally my leg freezes for a couple of seconds while I’m walking.
WHAT IS YOUR EXPERIENCE OF AVAILABLE TREATMENTS FOR YOUR TYPE OF BRAIN TUMOUR?
I was given the option of surgery, but I chose to watch and wait instead. My neurologist agreed that was the best idea. I want my life to be as normal as possible for as long as possible, and to be honest, the idea of anyone coming near my head with a sharp object petrifies me. For now, I just take anti-convulsant medication, which is still being tweaked, and have scans every 6 months.
Although Natasha hasn’t received treatment for her brain tumour, the anti-convulsant medication she takes comes with its own side-effects (something I can certainly relate to!).
Each time they increased my dose I was pretty depressed for a week or so, but that settled down. My balance and spatial awareness isn’t as good as it was, and I think it may have affected my memory a little bit but it’s hard to tell.
Tell me about your ‘new normal’?
My “new normal” is much the same as my old normal, but with a lot more medical appointments and less certainty about what the future will bring. Its a cliché, but I have had to learn to live in the moment and take things as they come. I put more effort into looking after myself and am still trying to be more open. This interview is part of that.
Earlier this year, Rich and I backpacked around South East Asia for three months. I didn’t want my diagnosis to stop me doing the things I love but figured I’d better do it sooner rather than later while I’m in relatively good health.
Where do you turn for support?
My partner, family and friends are my main support. Rich takes the brunt of it as he sees me through the many highs and lows which appear out of nowhere, but I’m aware I need to look after him too. I retreat to my family when I need shameless attention and pampering, whilst my friends indulge me by listening to my rants or make me feel normal by just doing the things we enjoy.
More formally, I have had some counselling to help me come to terms with my diagnosis, and I occasionally contact the lovely team on the Brainstrust hotline. They provide a great listening ear when I feel like my loved ones need a break and are able to reassure me that it’s normal to feel how I feel. I also belong to the Astro Brain Tumour Fund Low-Grade Glioma Support group on Facebook. I find it helpful to hear from other people with similar conditions, although I always remind myself that everyone’s situation is different. I stay clear from anything which includes the word ‘prognosis’ and anything which talks about higher grade tumours.
Has your diagnosis and/or treatment impacted on your career?
I’m fortunate enough to work for a health charity so they have been really flexible in accommodating my needs. My manager knows the situation and is fine with me taking time off sick if I’ve had a seizure or if my head’s just not in it. I realise there may be more significant impacts on my career in the future but I try not to think about that too much.
Natasha’s top-tips for other girls in the brain tumour club
Look after yourself, physically and mentally. Take the time you need for yourself, ask for help when you need it and do what makes you happy. Remember that everyone has something difficult going on in their lives which you might not know about.
You are not alone. Life is tough for everyone. Don’t let your brain tumour define you. It is just one small part of you.
Check out Natasha’s brilliant travel blog here. The link will take you to a post about a stay in rural Vietnam which included some amazing highs, as well as a not so amazing seizure.
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And, if you’re a girl living with a brain tumour, please get in touch. I’d love you to be part of this series.