Ali’s story
Ali’s mum, Sylvia, was vibrant, full of life and bursting with energy belying her 79 years. Her family imagined they would enjoy many more together, until a shocking brain tumour diagnosis meant that those years became weeks. Ali told us about her mum, the impact of the diagnosis on her and her family, and how the right support made a crucial difference for them all.
Sylvia loved her close family and grandchildren
My journey with Brain Tumour Support started in January 2023 when my mum turned up at my house, having travelled up to our home in Bristol from Devon, with the left side of her face dropped and feeling extremely tired. There weren’t any other symptoms at the time so she put it down to tiredness from the journey, though normally, she had boundless energy, was full of life and interests – a really young, vibrant 79.
Sylvia was always vibrant and full of life
But I wasn’t really happy about it so called an ambulance and, though all other vital signs were ok, they suggested they should get her off to hospital to check just in case. Being blue-lighted to Southmead did give me cause for concern, even though they’d said not to be, and mum was straightaway given a CT scan. Subsequently, it revealed that mum had a mass on the right hand side of her brain. That was really shocking but of course we didn’t have any idea about at all, and being upbeat and positive we felt at least it’s been found early, let’s see what we can do.
Mum went on the two-week fast track with another CT and an MRI, and then got called back to see the consultant, and at that point we found out that mum had a grade 4 glioblastoma – which literally floored me. The only thing they could give was palliative care, and we were talking weeks rather than months. So mum came up from Devon to stay at home with me and my daughters in Bristol, and she was with us for the next eleven weeks.
We had I think the best eleven weeks that we could possibly make it. Everybody who could visited, family and friends. We did lots of things – went to Buckingham Palace, took her to the Ritz, where they treated her like a Queen, which was right up her street and lovely! – and literally made the most of those weeks whilst we could, when mum was really deteriorating, but while we could do nice things we did.
Sylvia enjoying The Ritz
Mum’s condition was changing though, and it was following one night when she had a seizure that it was a turning point in her care and Brain Tumour Support came to our attention. From that point, we had a triangle of care between the hospice, the hospital and Brain Tumour Support, and my mum had the best possible care. If there’s such a thing as a good end to life, mum had it. And we couldn’t have been better supported. We were given our own counsellor, and Support Professional who checked in with us weekly, worked with our doctor to see if there was any care we needed, invited to support sessions, and it was just there if we wanted it. We didn’t need everything but we were definitely more cushioned by the fact that that support was there.
It was also the fact that you just felt like you weren’t on your own anymore dealing with it, that was the key thing.
And we got paperwork put in place, and, because mum’s condition was terminal, there were benefits that we were entitled to, and things like that that we just didn’t know about. So we were given all that available support and it just felt like we were being looked after, which made a massive difference. Because at that stage it’s a very lonely existence.
That’s why it’s so important that Brain Tumour Support exists, because you don’t realise what you need until you need it, and it was absolutely what we needed at the time.
And where charities were once the icing on the cake, they’ve now become the cake.
The ability to provide what we had in that situation, that’s what you would want for anybody. It was just invaluable. It made our life so much calmer, and that’s the thing, knowing that you always had that support there, and a number or an email, at whatever time it was.
At the time, you can’t imagine what you’d do without it really. It makes a massive difference.
Ali Woodhead | February 2024
Ali talks about how support for her and her family was crucial after her mum’s diagnosis
Through Brain Tumour Support, the whole family found specialist support, guidance and compassion, to help them through a devastating journey.
You don’t realise what you need until you need it, and it was absolutely what we needed at the time.
If you have been touched by Ali’s story and would like to contribute to Brain Tumour Support’s work there are many ways that you can get involved to help ensure that anyone facing the impact of a brain tumour diagnosis can find support.
If you are able to make a donation, helping us to be here for more people like Ali and her family, we would be very grateful. Our support services are always free to access and rely on the generosity of fundraising and donations to be maintained. Thank you so much.
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