I was diagnosed with a benign brain tumour on the 24th of March this year. The technical terms for it are either acoustic neuroma or vestibular schwannoma. I just call it the pain in the arse thing in my head. It was discovered after I had a seizure type episode and was taken to the emergency at our local hospital.
They sent me for an MRI and I was told about it that day. They now think it could have possibly been some sort of brain bleed but at this stage they’re not sure. I am very dizzy and I have lost much of my balance but luckily (for me anyway) not my sense of humour. I will be having it removed on the 24th of June and I can’t wait as I can’t drive for approximately 6 months after the operation, nor before due to the dizziness. I feel like I’m in limbo but enjoying the enforced rest too.
1) How you are told is very important
I was told about my tumour as though it was straight from a movie. I was called to the office by the practice manager where I had my MRI done and asked if I had somebody with me. When I said my father in law was in the car they asked me what the car looked like and went and got him. Then they told me I had a brain tumour. After letting it sink in they then informed me that if I was going to get a tumour, this is the type I would want. In that endless five minutes I had left my children without a mother and was nearly passed out with worry.
2) Have a list of questions
I went to the Alfred Hospital neurosurgery department the day after my MRI. I had questions all ready, everything from having to fill in a form to be an organ donor to if the hospital had Wi-Fi for patients. If I think of anything now I write it down, I’ve had seven appointments so far, so there’s always a time and place to ask questions.
3) I am a glass half full person
I’ve always been a glass half full person. Except when I was still a drinker, then I was a glass half empty girl all the time! Some people may call it sticking my head in the sand but I don’t see the point of looking on the dark side of things, unless you know there is no other choice and you have to be prepared. Once I was told it was operable I wanted to get down to business and find out how to get rid of this sucker.
4) If you have extras on your private insurance you can buy wigs and claim them
I’ve always fancied myself with a wig, since shaving my head for the World’s Greatest Shave. I’ve kept it short ever since but I rang my provider and they said that yes, with a letter from my doctor, I can claim two wigs per year at $250 each. I thought I might as well take advantage. The picture is me in one of my new glamour hair dos.
5) There are always people worse off than you
I know a few other people who are going through similar or worse at the moment. Much as I don’t want to be going through this by any means, I am still so grateful to know that, all going well, I will be back to normal (whatever that is.) I may have some facial paralysis but it will be temporary. I will also be deaf in one ear and have no balance for a while, needing rehab. I will be alive though and when you’ve got three kids, that’s all that matters.
6) Grey’s Anatomy isn’t realistic
I was told that my operation will be 12 hours. This includes tag teaming between a neurosurgeon and an ear, nose and throat surgeon. They say they wouldn’t be able to do the operation as one surgeon, all at one time. But on Grey’s Anatomy Amelia Shepherd did a brain surgery operation and it took 18 hours!
7) Brain tumours are more common than you think
Since being diagnosed I have had many people who have told me about their loved ones or others they know going through a similar thing. Luckily for the most part they have had positive outcomes. I have been offered the opportunity to speak with them but I have declined. I don’t want to know all the gory details, I have to go through it no matter what so for me, the less I know the better. I liken it to dentist visits and childbirth, I don’t need to know other’s stories which are their situation not mine. But I am grateful for the offer.
8) Netflix is wonderful
In the school holidays I invested in Netflix to keep my kids off my back, now we can’t live without it. For a reasonable amount each month we watch heaps of trashy TV shows and movies. I spend my days watching Arrested Development so any suggestions for a new series would be much appreciated.
9) I’ve lost my appetite
After recently doing a weight loss challenge and losing 22 kilos I now find myself without much of an appetite thanks to my ever present head traveller. I’m going with this, I only have 8 kilos left to lose and I genuinely lost my 22 kilos in the required time and by eating the right combination of foods. I’m loving that I will be in a great place physically to be operated on, no longer binge drinking, smoking or eating, I’m healthier than I’ve ever been. I kept going in my challenge because I figured it was one thing I could control. I can’t control my tumour, I can’t control deaths of my loved ones, but I can control if I lose weight or not.
10) I’m not wasting any more time
I’ve always had a thirst for knowledge and adventure. I love to write, I do an art class and I’m keen to learn to play the piano. I make the most of my life because I have lost many family members and I know how fleeting life really is. I want to die when I’m very old and I don’t want to look back with regrets about all the things I wanted to do but didn’t. Enjoy your life because you only get one. I’ll be fifty and fabulous next year, I can’t wait to start the second half century of my life!
Sarah blogs at:
Wow. What a strong and positive perspective this is on such a life altering situation. I wish all the health goodness on a positive outcome and a speedy recovery x
Thanks for sharing your incredible story. I wish you continued strength and resilience on your path ahead. Xx