Hi, I’m Ann. I live in South Wales with my partner, and I have a son who lives with his wife in Bristol. I enjoy spending time with friends and family, walking on the beaches and cliffs of the Gower Peninsula or in the many beautiful parks near where we live. When at home I like to cook, particularly curries or Greek dishes, and do craftwork: sewing and embroidery and generally making pretty things. I don’t watch much TV, but do enjoy a good crime drama if it’s not too violent or complicated!
I was diagnosed with a meningioma in November 2018, after having a seizure. I was reminded of my Mum having a brain tumour when I was six years old; she had surgery in 1968. My first thought, when I was diagnosed, was that if she got through it, having had surgery 50 odd years ago, then so can I.
I didn’t really let my mind wander from this thought – it’s what saw me through until surgery, and I tried to focus on that, not on what could go wrong. It threw me a bit when, in December 2018, seeing my neurosurgeon in Cardiff, he said the tumour was in a challenging location on my skull base. My partner Pete was and is very supportive. The mantras he repeated to me leading up to surgery included “there’s no reason why this surgery can’t be 100% successful”, and “your surgeon has to sleep at night – he wouldn’t be doing the operation if he didn’t think there’d be a positive outcome”. I could tell that the skull base news caused Pete to wobble a bit, but I found the strength – we were, and still are, a team. In hindsight I think I was in denial, to an extent, about the magnitude of what was happening in the period between my diagnosis and surgery. It was my way of coping.
After I had my surgery in March 2019, I had a follow-up appointment with my surgeon four months later, and was trying really hard to be the perfect patient – I wanted to come off Keppra, the anti-seizure medication I was put on! Being told that I had to be on the drugs for two years at least, as my tumour was small, but in an area associated with seizures, devastated me. Everything caught up with me. It was the identity shift that was difficult – I wasn’t prepared for going from a ‘surgery survivor’, to ‘epileptic’.
Shortly after this news, I rang a nurse specialist in Cardiff, but because she emphasised how I was “lucky to have this type of tumour”, and she used the word “benign” a lot (when it felt anything but!), I didn’t feel like she had much time for me. She did, however, give me brainstrust’s number, and I rang up in August 2019. I spoke to a fantastically supportive person on the phone, who sent me a brain box and signposted me to some places, the Maggie’s Centre in Swansea being one, and the brainstrust website the other.
This started a journey of support from brainstrust which I’m very grateful for. I’ve been to most of their webinars relevant to meningiomas, including ones about neuroimaging, fatigue, and so on. They’re always brilliant and very informative. The Meningioma Matters meetup group has also been a great source of support. I first joined in the autumn of 2020, and although I didn’t say much, other people were telling their stories, and it was a moment of revelation. They were just like me – they looked well and fine, and you wouldn’t guess they’d had surgery, but when they talked about the things I’d experienced, like fatigue, memory loss, cognitive issues, friends and family not understanding, etc, there was so much shared understanding and support between us. I felt like I’d been fighting it all, but joining the group made it easier to accept and come to terms with my experiences.
Once when I was on the group I mentioned having had MRI results that left me with more questions than answers. Helen was on the call, and after explaining how anxious and overwhelmed I felt, she recommended I try coaching. I ended up having fortnightly coaching sessions for a few months that year, and it really changed my perspective. Coaching helped me to understand I wasn’t being a ‘bad patient’ for asking my surgeon questions, and that it was ok to do this and get answers. Because of the support I got from coaching, I was able to decide not to spend the next year worrying, after I got some MRI results in September 2021. I would enjoy and make the most of the year ahead. brainstrust’s coaching gave me the confidence to ask the questions I needed to ask, and have open conversations with my neurosurgeon; and the webinars helped me to stay resourced and informed.
Accepting the new me
Hearing and reading other people’s stories has really helped me not feel so alone with the lifechanging nature of this diagnosis. I’ve learnt to accept the new me, and know that while I’m different to how I was – there are certain situations I now find difficult, and I don’t have as much energy as before – that’s ok. A brain tumour affects different people in different ways. Accepting this, and accepting help from everywhere it’s offered, plus talking about it and telling your story, can really help.
My advice if you are in a similar situation
My advice to others is to give yourself some slack – you will have bad days or moments, and it might be hard to adjust relationships according to how you’ve changed, but don’t be too hard on yourself. It may take a while, but it’s more than possible to find a new life that might be even better than before because you prioritise things differently. I’m now more aware of my needs and wellbeing, and I don’t waste time on things I don’t want to do, or that I know will take a lot out of me.
Write a lot – if you write down how you’re feeling, you can look back at some point and realise how far you’ve come. Be proud of yourself for getting through the dark days to a life that’s different, but still worthwhile.
If you are living with a meningioma diagnosis like Ann, brainstrust is here to support you. Visit our dedicated meningioma hub today for more information and advice. Call 01983 292 405 or email firstname.lastname@example.org to speak to a support specialist today.