Award-winning blogger Angela Conway lives in Northumberland. At just 21, she was diagnosed with a mixed-grade Astrocytoma on her optic nerve.
Following surgery, Angela co-founded the fundraising supporter group (The Brain Tumour Warrior Fund). The fund directly supports the wide-ranging work that The Brain Tumour Charity undertakes, and to date has raised circa 20,000 pounds.
Now 29, she tells me about adjusting to living within “new limits”; where other patients can turn for practical support; and how her employers have gone the extra mile to support her.
Let’s get stuck in!
WHAT LED TO YOUR DIAGNOSIS?
I was diagnosed when I was 21 years old. I was in my final year of Uni, in the depths of study and preparing my dissertation, when one evening I was lying in bed and felt an immediate, unbearable pain piercing through my head. I called for my flatmates and we rang 111, who said they’d send an ambulance as a precaution. Although Doctors were initially convinced it was a migraine, with me having studied for long hours that day, the immediacy of the pain raised some questions. I was sent for a CT scan from A&E, which revealed a bleed on my brain – a haemorrhage. I stayed in hospital for 4 days, where we found out it was caused by a brain tumour.
How has your diagnosis affected you?
Before I had surgery, in December 2015, I had 5 years of ‘watch and wait’: regular MRI scans, with no further treatment. This was because the tumour was slow growing, but in a tricky place to access. At the time, there were far more risks to opening me up and operating than there were to simply keeping a close eye.
Emotionally, that can be hard to deal with: someone once described it to me as ‘having an unexploded World War 2 bomb at the bottom of your lake’ – I’d say that was a good description of how it felt. You know that something bad is there and that one day it will have to be dealt with, but with not knowing how bad it will be or when it will happen, it can be very difficult to put to the back of your mind and get on with life in the meantime.
Physically, I have lost some of my peripheral vision due to the brain haemorrhage. Following surgery, I lost my driving licence for 18 months, which now I’m very grateful to have back – but it’s only a one year licence which is reviewed every Spring. I also get very tired and have spent a good amount of time learning my new limits.
What is your “new normal”?
Many things in life have had adjustments: for example, I do a weekly kettlebells class and tribal Bellydance class, but know which moves I can and can’t do, which ones I can do if I adjust slightly. That’s quite a new metaphor for the rest of life, actually: I’ve learned new adjustments to figure out how to still do what I want to do: be that speech coaching, working from home one day a week, or simply just factoring in naps!
Angela had surgery after five years of ‘watch and wait’. Here’s her description of what that’s been like:
After 5 years of watch and wait, in 2015 the tumour began to grow. I had surgery at Newcastle RVI to remove as much of the tumour as possible – we always knew we wouldn’t be able to take it all. I was in hospital for a week, took 6 months off work, and then eventually came back to work through a brain injury rehabilitation course with Momentum Skills. Now, I’m back to annual MRI scans.
My main side effects – loss of peripheral vision and fatigue – existed since the brain haemorrhage, years before surgery, and weren’t really made much worse by the surgery (long term, that is). I’ve also struggled a little with word finding, and have seen a speech and language therapist to learn new ways of coping. Since surgery, the main new side effect is struggling to bend my head down or lift heavy objects without getting dizzy.
Where do you turn for support?
I have a great support network in my close friends and family, but also I find brilliant support from The Brain Tumour Charity. Their private Facebook group is an absolute godsend for finding others in a similar situation, offloading to people who understand.
For practical support – things like understanding travel insurance – I turn to The Brain Tumour Charity too. Their online live chat means I can quickly ask questions on my lunch break at work.
HAS YOUR DIAGNOSIS IMPACTED ON YOUR CAREER?
Going through my brain injury rehab course at Momentum Skills has been invaluable in helping me to establish a ‘new normal’, work-wise. I’m so grateful that I’m still able to work full-time in what is a very fast-paced, demanding but fun job. My employer has been so on board with helping me to integrate back into working life post-surgery, and have gone through a short Momentum course themselves to help them to better understand the impacts of brain injury. I now work from home at least one day a week to help me to manage my fatigue levels.
Angela’s top tips for other girls in the brain tumour club
- Join The Brain Tumour Charity’s private Facebook group – it’s invaluable for finding a supportive network of others who understand what you’re going through.
- I’m often asked for my top tips of what to take into hospital if you’re having brain surgery – for me, that would be a triangle pillow, loose fitting comfortable clothes (that you can still wear with a catheter and not be in your pyjamas all day if you don’t want to be), and a good colouring book and pencils. My eyes/brain couldn’t handle TV for that first week, but colouring was just the ticket to prevent me getting bored.
- If you’re struggling with something, shout up – even if it seems small. I almost didn’t ask for help with my fatigue levels, or my speech problems, but I’m so glad I did. Talk to your neuro-oncology nurse if you have one, they should be able to point you in the right direction.
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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.