The Story behind Brain Tumour Hoy.

By Samantha Wright

Founder & President Hello - My name is Samantha and I have stars in my brain. The story behind Brain Tumour Ahoy {BTA} began in 2009 when I was first diagnosed with grade 2 Oligoastrocytoma.  But I call it Barry! My Oligoastrocytoma is defined as a low grade mixed Glioma brain tumour. Glioma brain tumours are made up of Glial cells called Oligodendrocytes and Astrocytes. Astrocytes are star shaped, hence the name ‘Astro’.  I have to admit I like the idea of star shaped cells in my brain. People often ask me how I came to be diagnosed, I was diagnosed when I had a Tonic-Clonic Seizure, This was the first seizure I have ever had in my life {that I am aware of}.  I have since learned there are many different types of seizures, ranging from mild that could go unnoticed {such as a slight tingle in the arm} to extreme.  When I had the seizure I was with one of my best friends and she gave me mouth-to-mouth and called triple zero because I was unconscious, turned blue and stopped breathing. My only memory before the seizure, was a metallic taste in my mouth. Which I have since learned is one of the signs (or auras) that I was about to have a Tonic-Colonic seizure. Now that I know more about brain tumours, I often try to think of any side effects that I may have had in my past that could have been attributed to me having a brain tumour. I realise now that there are so many symptoms which also make it so hard for the medical profession to detect early and diagnose. And because I had none of the typical brain tumour signs and symptoms this led me to carry on my life as usual I was unaware what was growing in my brain because my day to day life didn’t seem effected.  When I look back I can see that there were signs that perhaps were related to my brain tumour - mainly sleeping a lot and feeling tired at work.  I used to find a quiet spot and I would have to take a nap in my lunch break.  I was in my mid to late twenties when this was all happening and I realise now that this perhaps wasn’t the usual behaviour for someone of my age.  But I was living in London and work was busy, my social life was busy and I did lots of travelling, so I put it down to hectic London life. Looking back I may have had some changes in vison because I remember laying there at night in the dark while trying to sleep and I would see flashing lights, even when my eyes were open.  I dismissed this, not realising its significance.  If this had happened during the day I would have definitely gone to the Drs for a check-up. But at the time it didn’t ‘appear’ to really affect me because it happened at night and not very often. After the diagnosis came the anti- seizure medication, which I was extremely allergic to. One of the major side effects of the allergic reaction was that I broke out in a body rash. After going through three different types of medication my fourth stopped the rashes but even now every now and then I still get a slight face or rash on my body but it’s nothing compared to the reaction I got from the other medications. Immediately after my diagnoses I was told I would have to have an operation.  My Neuro Surgeon wanted to book me in for an operation the next day, but after hearing this news I admit I went into a bit of shock and denial.  And I decided to give myself eight months to prepare my body and mind for the operation.  I did this by meditating, eating healthy, exercising, etc.  In January 2010 I had a left frontal craniotomy to remove as much of the tumour as possible.  There were some complications during surgery because I had another seizure on the operating table - so the operation took much longer than expected.  Time-lines are still a bit hazy, but I remember my Neuro Surgeon telling me that she removed as much of the tumour as she could. But she would need to watch with frequent scans and wait to see if the tumour grew back because she did not know if it was completely removed. For me, it wasn’t a matter of ‘cut the tumour out, then I would be better’. I had a lot of post-operative side-affects to deal with.  I lost my ability to speak and had to go to speech therapy. I couldn’t read and my right arm was paralysed, and I was diagnosed with post-traumatic stress syndrome and acute anxiety disorder. I can look back now and see that I also suffered from sensory overload. Whereby things that your brain would normally process automatically without you even thinking about, is all coming at you at once i.e. sounds, movement, vision and comprehension. There is so much information coming into your brain that it leaves you feeling completely overwhelmed & at times may cause panic attacks and extreme anxiety. So I stopped going out and became fearful of leaving the house, which led to feeling isolated.  When I was ready to talk about what happened to me I started to look around for brain tumour support groups for my particular type of brain tumour and found that they were all primarily geared for high grade (cancerous) brain tumours. When I rang up to find out about one of the groups advertised I was strongly encouraged by the people who ran them not to join their meet up support group because they were for high grades. Which I totally understood because high grade brain tumours may have different needs and issues to deal with. So where did that leave me? Being told this was very distressing and made me feel even worse at the time. I have since learned that a low grade/benign/noncancerous brain tumour can be just as devastating and life threatening as a high grade/malignant/cancerous brain tumour. It all depends on how early it’s detected, where your brain tumour is located and if it is operable or not. Being sick can be really lonely and I learned that the body heals a lot quicker than the mind. At the time I was a young adult with a low grade brain tumour, who basically lived in my bed room and could not find the support I desperately needed.   I wanted something easy to access and where I didn’t need a car to get to (because after surgery I couldn’t drive for 6 months.) I wanted somewhere I could talk to others who had been in the same situation as me – a place where I didn’t feel different or self-conscious.  A place where people would understand why I said and did certain ‘odd’ things.  Such as forgetting the word for spoon, or bursting into tears because I was frustrated, stressed and/or tired. I had a dream of doing something positive with my situation that I found myself suddenly thrust into. I wanted to make a difference. I wanted balance, somewhere I could talk about serious issues as well as having a bit of a cheeky laugh. Because humour can be a great coping mechanism and a great ice breaker because it allows people to feel that its ok to talk about it and I found it to be an opening to start a conversation that may otherwise be difficult for some to instigate. I wanted somewhere that shared information and spread brain tumour awareness because when I was diagnosed I knew nothing about brain tumours. I wanted something that was a safe, positive and inspirational environment. I feel that brain tumours can be at times such a dark subject you also need a lot of light and love to balance out all that darkness. So I looked and searched for such a support group and needless to say I couldn’t find anything that was anywhere near what I wanted or needed. So this inspired me to create my own group and BTA was born! I felt at the time if I couldn’t find the help or support surely that meant others couldn’t either? I couldn’t stand the thought of others wandering around lost and confused after all that they had been through or were going through so this really motivated me to do something about it.  I thought by creating BTA I could really make a difference. Because of my experiences I wanted to help people so that they wouldn’t feel so alone and give a helping hand to those who are on a similar path to me and the people around them. I felt if I can help just one person not to feel so alone & help anyone affected by brain tumours then my job was done. I needed a name for my group… I eventually came up with Brain Tumour Ahoy because I was watching a lot of the Simpsons at the time and I remember one episode when one of the characters called Mr Burns answered the phone saying “Ahoy Hoy.” So then it became a way of saying - Ahoy! Hello - Anyone else out there on this freaky ride!? Need Help? Welcome aboard! And So I had a name I just needed the online part. It made sense to use Facebook because it was so easy to use and was/is extremely popular. So I created the BTA closed Facebook group. Once the Facebook group was set up I also needed a logo for BTA, so I set about designing one. Once that was done I got a friend of mine who is a graphic designer to make it a reality. And I ended up with the logo that you see today. The wings are for protection for those who are apart of BTA and to represent the wings of hope that we all fly on. The love heart represents love and positivity and finally the anchor represents BTA being a safe harbour to drop anchor. As the Facebook group grew I got another friend of mine to create a website for BTA which was a very exciting time in my life and I’ll never forget the pure joy of seeing the BTA website completed for the first time. Because I was a young adult when I was diagnosed, I noticed that there was a particular lack of awareness and support for young adults with low grade brain tumours who lived in Australia. I am very proud to say that when I started BTA it was the only online low grade brain tumour support group in Melbourne, Victoria and maybe even in Australia that I knew of. Initially this was who I geared BTA for. And as BTA grew I opened it up to include people of all ages, all 120 brain tumour types and BTA has now grown internationally. While still supporting young adults with low grade brain tumours. I wanted BTA to recognise people in all brain tumour stages and include people in various roles i.e. cares etc. I wanted BTA to help support carers, parents, friends and families of people living or have lived with a brain tumour. I know in my own life how important my friends and family were throughout my diagnosis so I felt they needed some guidance, support and helpful information too.  BTA has expanded even more with it now not only having a closed Facebook group, a BTA Facebook page, it’s on twitter, Instagram. And has its own merchandise including hoodies, t-shirts and hand-made brain tumour awareness jewellery  BTA also has market stalls, holds fundraisers and also collaborates and supports other brain tumour charities by holding fundraising events and sharing other brain tumour charities fundraising events and information. BTA realises having a brain tumour sometimes requires you to need brain tumour down time. Things that you find fun and BTA promotes and encourages it. BTA also likes to take a holistic approach because brain tumours affect your mind body and spirit. It affects all of you so BTA gives you access to eating healthy, yoga, meditation, recommended reading and much more. You can read more of what BTA’s about here. BTA is forever growing and expanding and finding new ways to bring awareness and support to the brain tumour affected masses. BTA is now a not for profit Incorporated Association and is in the process of becoming a registered charity!! The future looks bright for BTA and it has many goals and exciting plans a head! Thank you for reading the story behind BTA and if you want to help support BTA and its FREE please like the Facebook page and follow BTA on twitter and Instagram. If you would like to help support BTA even further so it can continue to help others who are affected by this insidious disease please visit our fundraising and donation pages. Please know that any amount does make a difference and funds hope, much needed support and awareness. My brain and my heart thanks you for your support and helping me to continue to make a difference in people’s lives by supporting BTA.