Why I Support The Brain Tumour Charity
After being diagnosed in October 2018, it was an obvious shock; a major relief, yes, but a shock nonetheless. The first month of diagnosis consisted of CT scans, MRI scans, a biopsy, and a craniotomy to get Bertherb (the snazzy name of my brain tumour) out of my head for good, or for at least a few weeks before he made a return. It was during this time the isolation of my diagnosis really started to hit me, people weren’t sticking around like I had expected them to and life moved on while I sat in bed with aching joints and a fuzzy memory. I felt alone, even though I had an amazing support system around me; my family surrounded me immediately, some coming down from Devon and Plymouth to comfort me and console me through such a tough time. I had family friends sending me their well wishes, my boyfriend’s family supporting me as we all came to terms with what was going on. A brain tumour diagnosis takes such a toll on your mental health, understandably. I felt incredibly alone because while all those around me were loving and caring, none of them could fully comprehend what it really feels like to have a brain tumour.
It was coming across The Brain Tumour Charity that really began to help me, and to improve my outlook once I had come back down to the cruel reality. After spending around 2 months on a lot of drugs, and these pesky steroids called Dexamethasone that make you eat like crazy and give you what we call a 'moon face', everything began to hit me all at once. The problem with steroids is that they made me see a positive in everything, I had a positive answer for everything and I had an inhuman amount of energy that meant I was in my Mum’s room at 6am with a cup of tea chatting away after only needing to sleep for a few hours. Yet, once I came off them and the plethora of side effects began to subside, I was tired, angry, cranky and upset. Most of all I was alone; everyone around me understood why I felt this way, but they didn’t understand why.
It was amidst searching online about brain tumours, coming across words and statistics that scared the life out of me that I finally came across The Brain Tumour Charity. It seemed strange that being diagnosed with a brain tumour didn’t come with a leaflet from this charity, or even a mention of it in my case. For hours, I sat on their website reading into what my tumour really was, why it wasn’t my fault, and what they were doing to find a cure for brain tumours when I came across their support groups. Having spent the last few weeks in bed scrolling through Facebook, I was pleased to see they offered support groups for all people who had been diagnosed, but specifically to see they had a group just for young adults. I had never even heard of anyone who was diagnosed with a brain tumour at 19, even when in hospital I stuck out like a sore thumb because I was obviously the youngest in the ward. The first thing you hear when you mention your diagnosis is ‘Oh my God! But you’re so young?!'. Being what felt like the only young adult with a brain tumour only exacerbates the isolation, but finally I had come across a group that was brimming with people just like me. I joined the group, and explained in a post who I was and what my official diagnosis was and I was met by loving comments from other members sharing their stories back with me. I read through everything with tears in my eyes, not only for the pain others had gone through but because finally I was in touch with people who just got it. There was an underlying knowledge, an unspoken language where we didn’t have to try to explain ourselves and how we were feeling, because we all understood each other.
I spent the next day reading through other posts in the group, reading through comments about advice and anecdotes, feeling happy to have found somewhere I could go if I had an issue. To this day, I still check every notification that comes through from the group. The Brain Tumour Charity had finally given me a fantastic outlet, and I’ve become well acquainted with many members of the group and have become invested in their own journeys throughout the neurological nightmare that is a brain tumour. Coming across these personal stories also allowed me to stay up to date with the work The Brain Tumour Charity are constantly doing to push for more awareness and research to allow for a cure. Keeping up to date with clinical trials, research papers, and volunteer work is a great way to stay inspired, and to be relieved about what treatments there are for me to partake in. A great example of this is the use of 'The Pink Drink’ (5-ALA) that is being given to patients undergoing a craniotomy, allowing neurosurgeons to see tumorous tissue to safely remove as much of the tumour as possible. I was lucky enough to have 5-ALA used on both my craniotomies, without even knowing it was because of The Brain Tumour Charity’s work from earlier that year. The Brain Tumour Charity campaigned for 5-ALA to be used in all craniotomies, allowing all patients to receive equal treatment, stating:
‘People affected by a brain tumour should have the same access to high quality treatment, care and information regardless of post code, age or tumour type. Unfortunately, this is not always the case. With your help we can change that.’
The Brain Tumour Charity were successful in this case, as in April 2018 the Department of Health and Social Care began rolling out the use of 5-ALA in craniotomies. It was later in July 2018, NICE (National Institute for Health and Care Excellence) published new guidelines for brain tumours, recommending the use of 5-ALA in brain tumour removal. Remarkably, these new guidelines published by NICE were the first guidelines on brain tumours in a decade. With clinical trials progressing all the time, it is exciting to see what will be the next ground-breaking result. These trials have been used throughout my own journey and I was blissfully unaware at the time, whether it be the 5-ALA used in my surgeries or the temozolomide tablets I’m being given following radiotherapy. A recent study showed that temozolomide (a chemotherapy drug) being used for patients with Grade II tumours and anaplastic astrocytoma’s was incredibly successful, almost doubling the amount of time a patient would live overall and without the disease progressing. Given that my official diagnosis is a Grade II Gemistocytic Astrocytoma, with possible progression to Anaplastic Astrocytoma (what a mouthful), this clinical trial fit me perfectly.
The Brain Tumour Charity also allowed me to kick start my own mission into raising awareness for the diagnosis and treatment of brain tumours. I was able to draft a press release, getting me in touch with local and national newspapers that ended in my story being published in multiple papers, landing in America on Fox News’ website, popping up on a YouTube video, as well as having an interview with ITV Anglia talking about why GP surgeries needed to step up in their constant misdiagnosis of brain tumours. The charity as a whole has been a genuine life saver for me and undoubtedly for others too. While we may not yet be at a stage where we have a definitive cure for brain tumours, the steps we have taken into getting there are immense. With thanks to The Brain Tumour Charity, patients now have the right to access the 5-ALA drink if they undergo surgery, and these patients will also have a place to confide in with the multiple groups set up, and can find lifelong friends who understand what you’re truly going through.
If any of you decide you’d like to learn more about the charity or would just like to browse their website, I will link it below. There are plenty of ways to get involved in our plight to cure brain tumours, and all the support is incredibly appreciated. I’d also like to give a special thanks to the admins on The Brain Tumour Charity Young Adults group, for it was that group that helped me become more at ease with my own diagnosis, and inspired me to blog about my experiences.
https://www.thebraintumourcharity.org
It was coming across The Brain Tumour Charity that really began to help me, and to improve my outlook once I had come back down to the cruel reality. After spending around 2 months on a lot of drugs, and these pesky steroids called Dexamethasone that make you eat like crazy and give you what we call a 'moon face', everything began to hit me all at once. The problem with steroids is that they made me see a positive in everything, I had a positive answer for everything and I had an inhuman amount of energy that meant I was in my Mum’s room at 6am with a cup of tea chatting away after only needing to sleep for a few hours. Yet, once I came off them and the plethora of side effects began to subside, I was tired, angry, cranky and upset. Most of all I was alone; everyone around me understood why I felt this way, but they didn’t understand why.
It was amidst searching online about brain tumours, coming across words and statistics that scared the life out of me that I finally came across The Brain Tumour Charity. It seemed strange that being diagnosed with a brain tumour didn’t come with a leaflet from this charity, or even a mention of it in my case. For hours, I sat on their website reading into what my tumour really was, why it wasn’t my fault, and what they were doing to find a cure for brain tumours when I came across their support groups. Having spent the last few weeks in bed scrolling through Facebook, I was pleased to see they offered support groups for all people who had been diagnosed, but specifically to see they had a group just for young adults. I had never even heard of anyone who was diagnosed with a brain tumour at 19, even when in hospital I stuck out like a sore thumb because I was obviously the youngest in the ward. The first thing you hear when you mention your diagnosis is ‘Oh my God! But you’re so young?!'. Being what felt like the only young adult with a brain tumour only exacerbates the isolation, but finally I had come across a group that was brimming with people just like me. I joined the group, and explained in a post who I was and what my official diagnosis was and I was met by loving comments from other members sharing their stories back with me. I read through everything with tears in my eyes, not only for the pain others had gone through but because finally I was in touch with people who just got it. There was an underlying knowledge, an unspoken language where we didn’t have to try to explain ourselves and how we were feeling, because we all understood each other.
I spent the next day reading through other posts in the group, reading through comments about advice and anecdotes, feeling happy to have found somewhere I could go if I had an issue. To this day, I still check every notification that comes through from the group. The Brain Tumour Charity had finally given me a fantastic outlet, and I’ve become well acquainted with many members of the group and have become invested in their own journeys throughout the neurological nightmare that is a brain tumour. Coming across these personal stories also allowed me to stay up to date with the work The Brain Tumour Charity are constantly doing to push for more awareness and research to allow for a cure. Keeping up to date with clinical trials, research papers, and volunteer work is a great way to stay inspired, and to be relieved about what treatments there are for me to partake in. A great example of this is the use of 'The Pink Drink’ (5-ALA) that is being given to patients undergoing a craniotomy, allowing neurosurgeons to see tumorous tissue to safely remove as much of the tumour as possible. I was lucky enough to have 5-ALA used on both my craniotomies, without even knowing it was because of The Brain Tumour Charity’s work from earlier that year. The Brain Tumour Charity campaigned for 5-ALA to be used in all craniotomies, allowing all patients to receive equal treatment, stating:
‘People affected by a brain tumour should have the same access to high quality treatment, care and information regardless of post code, age or tumour type. Unfortunately, this is not always the case. With your help we can change that.’
The Brain Tumour Charity were successful in this case, as in April 2018 the Department of Health and Social Care began rolling out the use of 5-ALA in craniotomies. It was later in July 2018, NICE (National Institute for Health and Care Excellence) published new guidelines for brain tumours, recommending the use of 5-ALA in brain tumour removal. Remarkably, these new guidelines published by NICE were the first guidelines on brain tumours in a decade. With clinical trials progressing all the time, it is exciting to see what will be the next ground-breaking result. These trials have been used throughout my own journey and I was blissfully unaware at the time, whether it be the 5-ALA used in my surgeries or the temozolomide tablets I’m being given following radiotherapy. A recent study showed that temozolomide (a chemotherapy drug) being used for patients with Grade II tumours and anaplastic astrocytoma’s was incredibly successful, almost doubling the amount of time a patient would live overall and without the disease progressing. Given that my official diagnosis is a Grade II Gemistocytic Astrocytoma, with possible progression to Anaplastic Astrocytoma (what a mouthful), this clinical trial fit me perfectly.
The Brain Tumour Charity also allowed me to kick start my own mission into raising awareness for the diagnosis and treatment of brain tumours. I was able to draft a press release, getting me in touch with local and national newspapers that ended in my story being published in multiple papers, landing in America on Fox News’ website, popping up on a YouTube video, as well as having an interview with ITV Anglia talking about why GP surgeries needed to step up in their constant misdiagnosis of brain tumours. The charity as a whole has been a genuine life saver for me and undoubtedly for others too. While we may not yet be at a stage where we have a definitive cure for brain tumours, the steps we have taken into getting there are immense. With thanks to The Brain Tumour Charity, patients now have the right to access the 5-ALA drink if they undergo surgery, and these patients will also have a place to confide in with the multiple groups set up, and can find lifelong friends who understand what you’re truly going through.
If any of you decide you’d like to learn more about the charity or would just like to browse their website, I will link it below. There are plenty of ways to get involved in our plight to cure brain tumours, and all the support is incredibly appreciated. I’d also like to give a special thanks to the admins on The Brain Tumour Charity Young Adults group, for it was that group that helped me become more at ease with my own diagnosis, and inspired me to blog about my experiences.
https://www.thebraintumourcharity.org
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