2016. The year I gave birth to Ivy, my first, my beautiful, my perfect little baby. That’s what 2016 was meant to be about. Instead, 2016 became the year they found the Brain Tumour.
It all started a few weeks after Ivy was born. I had a strange hallucination episode in Aberystwyth Lidl. I went to the GP, worried that I was having postnatal psychosis. “It really doesn’t sound like that” she said. More episodes, more blood tests, more waiting, more episodes. “They’re just hormonal”, I said, “they’re getting better” I said, “must be the hormones settling down, I’ll be fine…” The GP didn’t really agree. “I think you should have a scan”.
Brain scans. Source of endless comedy, you’ll have to read the blog for that (www.amysbrain.co.uk) . One, two, three scans. The diagnosis became clearer. “Probably a low grade glioma” according to the brain surgeon. Clever folk brain surgeons, he’s probably right. “That doesn’t sound too bad”, I think, “low grade is good news”. Until I reach for my phone on the drive home and google it. It’s not great news at all. Doctor google is notoriously unreliable but in this case almost unbearably pessimistic. The three of us drove home in tears.
Ivy came with me to the hospital in March of this year when they carefully sawed a hole in the side of my skull and removed a chunk of my tumorous brain. Remarkably I was breastfeeding again within a couple of hours but it wasn’t fun. I was still feeling a bit queasy from the anaesthetic. So, in a dramatic reversal of roles I vomited on the baby. Ivy styled it out admirably and fed right through the clean-up operation. A bit more milk and all forgiven!
The surgery came and went and I recovered remarkably well, back on the squash court after 6 weeks. I have a 4 inch scar running from the front of my ear and half way up my head. Also a small scar on my forehead which I hate more that the big one. It’s where they screwed my skull down to the operating table. That just seems unnecessarily violent.
Following surgery, the tumour was sent off to a lab for tests to check exactly what it is. Mine came back “grade 2 astrocytoma”, a type of low grade glioma. A doctor friend writes “well that’s at the better end of the spectrum of possibilities”. She’s right. In summary, if you had to have cancer you really wouldn’t want brain cancer. If you had to have a type of brain cancer, you wouldn’t want a glioma. However, if you had to have Brain Cancer and had to have a Glioma then really mine is up there with the one you’d like the best. So, I’m lucky in a way.
So what now? I feel fine. I don’t feel ill at all and actually feel better than I have in ages and so life just carries on as normal only I will have regular trips in the MRI machine to monitor the growth of the cancer. Currently there is no cure for Low Grade Glioma and nothing to stop it growing. Radiotherapy and chemotherapy can buy a little time toward the end but can’t cure me. As it stands, this cancer will kill me. Brain cancer kills more adults and children under 40 than any other cancer. Brain cancer kills more women under 35 than breast cancer.
There is cause for optimism in my case. Grade 2 Astrocytoma tend to be very slow growing and despite the fact that I’m headed toward a drastically reduced life expectancy there is a realistic possibility that we can find a cure within my lifetime. If I can make it 5, 10 or 15 years down the line then a cure might become available to me. To this end, I have a plan.
I’m raising funds specifically to find a cure. It can be done! If you’d like to support me, and keep thousands of others in my position alive for longer, you can make a donation to the Brain Tumour Charity who is putting 100% of funds raised towards research.
My blog… www.amysbrain.co.uk
By Amy Ellen.
Heulwen was in school with Amy, they have always been friends and Heulwen would like to thank Amy for sharing her story and writing this amazing article for Mam Cymru. If you can donate, please do so. Diolch Amy x