Ashley
The month of March is Brain Tumor Awareness Month, and something that anyone affected by a brain tumor can say is; in life there are times where you are suddenly faced with a crossroad, and both sides of the path seem frightening. Brain tumors may seem like a rare happenstance, one that would never affect your life – but statistics show that brain tumors are more frequent than you may imagine, and there’s a chance that you, or someone you love, will be affected by the condition.
This is why awareness is needed, this is why organizations like The Brain Tumor Charity exist; to bring help, hope, and strength to those who are up against the fight of their lives when they get diagnosed. The charity has organized A Cure Can’t Wait – a research strategy that focuses on the dire need to find a cure. Over the next five years, the charity says, 46,000 people will be diagnosed with a brain tumor and almost 25,000 of them will die. Not only that, but there are so few options for patients diagnosed with brain tumors and in large, they are found too late which alters the condition of living for people diagnosed.
One story of survival against the odds is one of a young woman named Heather – who knows all too well why a cure, proper treatment, and research are so important in defeating brain tumors for good.
What were your first symptoms/how long did it take to be properly diagnosed? My first symptoms were hearing loss, headaches, dizziness and nausea which went on for 18 months during which time I saw 3 different doctors who misdiagnosed me with everything from migraines to a vitamin deficiency. The 4th GP I saw referred me for an MRI scan, where I was finally diagnosed with an acoustic neuroma. By then, the tumour was the size of a large orange so the only option was to have surgery.
Surgery was your only option, what happened next? I had 2 brain surgeries, 1 to drain the pressure in my skull (which was at a life threatening stage by then) and 1 to remove part of the tumour. They couldn’t remove it all as part of it is too firmly attached to my optic nerve & removing it would have risked blindness.
The surgery left me 50% deaf and with many long term complications such as facial paralysis, balance issues, fatigue, muscle spasms and loss of tear function. I have to tape my paralysed eye shut every night in order to sleep. I’ve had 2 of 4 corrective surgeries which have left me with permanent nerve damage in one leg and permanent muscle damage in the other.
Has your tumor affected your life, if so, how? It has affected my life in every way. I lost my confidence, I was bullied online with people sending me links to suicide websites & saying if they looked like me they would kill themselves & they thought I should. I lost the majority of my friends. I was never well enough to go out and almost all of them abandoned me. I was at uni in London with a year left to go to graduate and an internship with a major record label so it was robbed me of my dream career too.
Why is The Brain Tumor Charity so important to you? The Brain Tumour Charity is so important to me because it is working to promote symptom awareness and it’s given me something positive to focus on by helping to support them. Early diagnosis would have changed everything for me and that’s why I’m so glad that is the emphasis of their latest campaign.
What would you say to anyone going through what you went through? To anyone going through the same thing, I’d encourage them to speak to others and contact the charity. I wish I had known about TBTC when I was first diagnosed as it would have made things a lot less scary if I had been able to find out what to expect and to know that how I am now is normal for a BT patient.
What has helped you in making coping with life easier, after the diagnosis? Music and Twitter really got me through everything. There’s a lyric “you are never on your own and the proof is in this song” that really resonates with me as I never feel alone anymore. Through a couple of bands I’ve made a whole load of new friends on Twitter and I have a huge support system now that means the world to me.
What is a positive quote you use to get through hard times? There’s a John Lennon quote “count your life by smiles, not tears” that I really love. There’s nothing I can do to change my situation but what I can do is promote the charity and make the most of every single day – my smile might look a bit wonky, but it’s there!
Heather survived her tumor and has gone on to dedicate part of her survival in helping to improve the lives of people currently affected by a brain tumor, and although her story has a happy ending; she still suffers with the aftermath of late tumor diagnosis from a lack of proper research.
All it takes is one voice to make a difference, and Heather’s does – if you’re inspired to help please visit The Brain Tumor Charity and see how you can donate and spread the word – sometimes the small steps mean the most!
