With brain tumor awareness month drawing to a close, we wanted to share a special feature interview with our readers. Hearing facts and statistics about brain tumors and their symptoms is one thing, but hearing from someone who learned first hand how hard it is to diagnose a tumor, and how there is still so much room for improvement with what happens next, that changes everything.
We interviewed Heather last year for brain tumor awareness month and in the last year, something incredible happened for her, she got her smile back. Heather’s face lit up before, but now, she truly shines and that comes from the confidence that she got back after a facial reconstructive surgery. Her journey with her brain tumor won’t ever be completely finished, which is the case with most people who are diagnosed. It’s not just a solitary condition, not something that you have, and then don’t. It’s something that changes your way of life, and the way of life for those around you.
Heather is a fighter, she’s a sign of hope that things will get better and that until they do, that life is worth fighting for. Her story is sure to inspire you, no matter what you’re facing in your life.
We interviewed you last year for brain tumor awareness month. A lot can change in a year. What has been the biggest change for you?
A- The biggest change is being able to smile again honestly. My face is still swollen and I still get rude comments from people in the street but it’s not as often as it was before surgery. It’s so nice being able to smile again so I don’t look grumpy all the time haha!
In the past year, have you seen any advances in treatment or the process of diagnosing brain tumors? If so, what were they?
A – I’ve seen more and more cases where people have actually been diagnosed after a visit to A&E after a seizure or something similar having been misdiagnosed by their GP. This needs to change because time is everything in a lot of cases and the longer it takes to diagnose the more complications there can be.
You’re involved with The Brain Tumor Charity pretty closely, what has being part of that organization meant to you?
A- I’ve been lucky to do some amazing things since I started volunteering with the charity. Meeting Viv (the local Community Fundraiser for TBTC) changed my life and gave me a new outlook on what was and still is a tough time for me. I’ve done press and radio interviews, an awareness video and I’ve spoken at the Scottish Parliament reception the charity held because my case is a prime example of why early diagnosis is vital. I’ve loved everything I’ve been asked to do for the charity, from shaking buckets and bag packing in supermarkets to helping organize a charity gig and I’m always active on social media trying to attract attention for the charity account. Awareness is key so social media helps a lot with that.
Volunteering with the charity has also meant I’ve been able to speak to other people who have or have had a tumor and it helps to talk to people who’ve gone through the same experience. We also often speak to family members who’ve lost loved ones at charity events and that brings home how lucky I am to still be here.
For those who don’t know, can you share a little bit about your road to being diagnosed?
A – I had been losing my hearing in one ear, fainting, dizzy spells, nausea and terrible terrible headaches for over a year and saw 3 GPs who misdiagnosed me with everything from migraines to cluster headaches before the 4th one referred me for an MRI scan and that’s how they found the tumor.
If you could tell doctors/general practitioners one thing about early diagnosis/signs to look for, what would you tell them?
A – I would tell them to be more symptom aware in general. Although the symptoms can mirror migraines I don’t think that should be the assumption they make. A brain tumor is the last thing a GP seems to think of and it should be the first.
A lot of people are scared to talk about brain tumors, and quite frankly, it’s a scary subject. What has changed for you in a positive light? Are you more aware of the little things in life, do you spend more time with friends and loved ones?
A – Working with the charity changed how I felt about it in general because I feel like helping them means I’m actually doing something productive.
I’m definitely more appreciative of the little things, like now being able to sleep without having to tape my eye shut after my last surgery might sound small but it’s a massive difference in my life because it hurt to rip the tape off every morning.
I always spent a lot of time with family anyway but I’m so grateful now especially to still be here to watch my new baby nephew grow up, see my friends’ kids grow older etc.
I’ve found out who my real friends are definitely. A lot of people ditched me when I was diagnosed but I’ve got a circle of friends now who are so supportive and wonderful who I love to pieces.
They don’t treat me any different and although they know I’m in pain every day and look after me if they know I’m having a particularly bad pain day our conversations are never centered on me being ill.
I’ve got the best friends anyone could ever ask for and I’m so grateful for all of them.
An overnight cure would be a blessing, but is a stretch, however, if you could make one advance in brain tumor treatment, what would be?
A- I’d love there to be a way to treat all types of brain tumors without having to undergo surgery. Like a magic medication that cures all tumors. Surgery is an ordeal no matter the circumstances and it would be brilliant for people not to have to experience that.
It’s unlikely that that will ever happen, at least not anytime soon but again that’s why donations to TBTC are vital so they can continue their research into finding a cure.
You’ve undergone some reconstructive surgery, can you tell us a little bit about that. What were the reasons you had the surgeries? What changes have you noticed?
A – I’ve had 3 reconstructive surgeries to correct my facial paralysis, although they have caused nerve damage to one leg, muscle damage in the other and tissue damage to my stomach so they haven’t been without their complications.
It has been worth it though because the difference they’ve made is amazing. My surgeon not only gave me my smile back but he fixed my eye so it closes pretty much fully so it’s easier to sleep, it doesn’t ache when I’m outside in windy conditions anymore and it’s given me a bit of confidence back.
In your day to day life, what has changed the most since your diagnosis?
A – I think what’s changed the most is my view on life. I don’t make long term plans anymore because I never know how I’m going to be health-wise from one year to the next. I’ve been in pain every single day for almost 7 years now so I guess how I live day to day has changed because I’ve got used to getting through the day and ignoring the pain as best I can.
What has changed most for your close friends and loved ones?
A – I think it’s been as big an ordeal for them as it has been for me. They’ve had to watch me go through all the operations and for my mom especially that must have been tough because as a parent you just want to fix everything for your child and I think she felt powerless.
They all still worry if I say I have a headache (which is why I don’t usually admit it) and it’s always in the back of their minds like it is mine that there’s still a tumor the size of a ping pong ball in my head.
Mom, I think, still struggles with feeling like life has been unfair to me and she worries about what my life will be like in the future, is sad about everything I lost when I was diagnosed with my internship and not getting to finish my degree etc.
I think it must be hard for them to get used to how I’ve changed as well. I have OCD now after brain surgery so they’ve had to get used to all my little quirks and obsessions about ridiculous things. I can also get irate about silly things too but I can’t control it, it’s like a switch goes off in my head and before I know it I’m ranting about something I don’t even realize I’m ranting about.
Having spoken to other people on the charity forum though this is common after brain surgery so at least I know it’s not just me!
For anyone newly diagnosed who may stumble upon this, what advice would you give them for their journey?
A – I would tell them to talk to other people who’ve been through the same situation. Nobody truly understands what it’s like unless they’ve been through the same thing and I wish I had known about the charity when I was diagnosed because it would have been a lot less scary if I had known what to expect.
What do you hope changes this year in medicine involving brain tumors?
A – I hope diagnosis times are greatly reduced which is why the Headsmart campaign is so essential. If all GP surgeries had Headsmart symptom cards in their offices it might make them more likely to act quicker and rule out a brain tumor rather than it being the last thing they consider.
I would also like to see a greater understanding of the after effects of brain surgery and more support made available for the months following the surgery, greater access to physio for people with paralysis but primarily I would love to see a significant difference in the statistics.
Awareness is everything, so in time hopefully that will be the key to a cure.
During Heather’s interview, she spoke of The Brain Tumor Charity and the Headsmart Campaign. During brain tumor awareness month, we’ve focused on examples of what the charity does to try to help people who have been living with a diagnosis, are newly diagnosed, or those who love and care for them. The Brain Tumor Charity is a front line in the battle against brain tumors but also one of the most informative places, that exist anywhere, to get information on everything from symptoms to what’s being done to work towards a cure.
One of the ways that the Headsmart Campaign aims to reach a wide audience is by doing it in a unique way. They give information about ‘being headsmart’ with symptoms of a brain tumor, and they do so with a song and little stick figure who experiences those symptoms.
If you are currently fighting a brain tumor or if you love someone who is, please know that you’re not alone in your fight. As Heather said, find support and reach out to anyone who’s experienced what you have and don’t forget to check out The Brain Tumor Charity.