Five days ago I sent out a tweet that said "Hey #Halifax did you know it's #braintumorthursday to raise awareness that October is also Brain Tumour Awareness Month in #canada #btam. That's all it took for Julia Wong from Global News in Halifax to call the Brain Tumour Foundation. Hours later I received an email from Meghan at the Foundation asking if I would be willing to tell my story. That I was the first person she thought of when a reporter called her from Halifax. I instantly said of course I would and it wasn't until a while later that we all put the pieces together that it was because of my tweet that Julia called and she was now interviewing the "tweeter" Proof that one little tweet on #braintumourthursdays can make a huge difference.
The interview went well considering I've never had one before, except for a job of course but they don't normally have a camera pointed at you. I was not as nervous as I thought I would be. Julia was as lovely as they come, so easy to talk to and made us both feel very comfortable. I told my story as I was asked to as did T Jay and they, the news people, pick and choose what they want or need for their story. I think she did a great job in raising awareness for the Brain Tumour Foundation's request for a national registry.
I've been asking all month if anyone can hear me...speak up, write to Government, with awareness comes change and I think I did it. I think they actually heard me!!! You can hear and SEE me by clicking HERE
It's not too late to write to Government yourself. Click here and fill out the very simple form. You will be helping so many people with your few words, and as I learned today, words are powerful.
Showing posts with label Brain Tumour Awareness Month. Show all posts
Showing posts with label Brain Tumour Awareness Month. Show all posts
Tuesday, October 29, 2013
Sunday, October 20, 2013
How Much Did Your Brain Tumour Cost, Mentally?
I could barely keep my eyes open last night as a crawled in to bed. I don't remember gazing at the clock in the middle of the night, I think I slept straight through!!! A rare occurrence for me. When I woke at 7:30 this morning I couldn't believe that I slept in, and as I stretched I ached all over. There is only one explanation for this, I had a yard sale yesterday. Now who in their right mind would think a little yard sale would exhaust someone that much? Not me that's for sure, and I had the help of many hands. What I am realizing is sometimes the mental aspect of something is far more exhausting then anything physical. Again the recovery of the brain is a little more complex then I originally thought.
My yard sale was a huge success as I had no prices on anything. It gave me a great opportunity when asked "How much do you want for this" to reply "it's all simply a donation to the Brain Tumour Foundation of Canada". Which for many, peaked an interest as to why I choose this charity. I spent my morning talking about my brain tumour, The Brain Tumour Foundation and all their support and the amount of Canadians diagnosed with a brain tumour every single day. This lead to listening to other's stories of struggle, defeat and survival, many hugs from strangers and a wonderful feeling that I was helping a charity that few people knew existed.
I'm proud to say that my small yard sale generated $215.15 for the making "cents" of brain tumours campaign that the Foundation is running for the month of October, in honor of Brain Tumour awareness month. I am thankful for every donation.
One thing that came up in conversation many times yesterday is how lucky we are to live in Canada. I have no idea how much my surgery would have cost, my many trips to multiple specialists or my upcoming radiation. What I do know is I count my blessings for all of the above. One thing that is sadly underfunded however, is how much my brain tumour cost me mentally. We don't take mental health seriously enough in this Country as our access to resources are limited. This is why I am grateful for the Brain Tumour Foundation of Canada's resources. People don't really know much about them because they don't really advertise. Instead of spending millions of dollars on fancy campaigns like some charities, the money that is raised goes back into research and support. They rely on those who have been affected to help. Aren't they lucky that I have a brain tumour? Not because I'm raising money from my driveway or from the comfort of my couch (my next fundraising idea) but because I love to help. When I was first diagnosed, I had no one to turn to. Friends and family were great support but they knew just as much as I did about brain tumours...nothing!!! I found the foundation on line, not because my Doctor, Neurologist, or Neurosurgeon suggested it. I found it because I went looking. There is something seriously wrong with that picture. There is a huge resource out there to support the 27 Canadians who will get diagnosed today, and no one told me about it. Not fair!! We NEED a national data base in Canada, we need the health care system to work with Foundations like these. Research as important as it is, is only part of the picture. Someone needs to reach these 27 Canadians and ask them "are you ok,I know what you are going through" Wouldn't it be a perfect world if a patient's mental health was valued as much as their physical?
So how much has my brain tumour cost, mentally? More then I can ever put into words. What I can do is use my rather "large presence" in this "petite body" (in other words...big mouth) to let people know that there is support, there is help and there is someone who understands what you are going through. I will do what I can to help out financially through fundraising so that the Foundation can reach one more person. Even if that's $215.15 at a time.
My yard sale was a huge success as I had no prices on anything. It gave me a great opportunity when asked "How much do you want for this" to reply "it's all simply a donation to the Brain Tumour Foundation of Canada". Which for many, peaked an interest as to why I choose this charity. I spent my morning talking about my brain tumour, The Brain Tumour Foundation and all their support and the amount of Canadians diagnosed with a brain tumour every single day. This lead to listening to other's stories of struggle, defeat and survival, many hugs from strangers and a wonderful feeling that I was helping a charity that few people knew existed.
I'm proud to say that my small yard sale generated $215.15 for the making "cents" of brain tumours campaign that the Foundation is running for the month of October, in honor of Brain Tumour awareness month. I am thankful for every donation.
One thing that came up in conversation many times yesterday is how lucky we are to live in Canada. I have no idea how much my surgery would have cost, my many trips to multiple specialists or my upcoming radiation. What I do know is I count my blessings for all of the above. One thing that is sadly underfunded however, is how much my brain tumour cost me mentally. We don't take mental health seriously enough in this Country as our access to resources are limited. This is why I am grateful for the Brain Tumour Foundation of Canada's resources. People don't really know much about them because they don't really advertise. Instead of spending millions of dollars on fancy campaigns like some charities, the money that is raised goes back into research and support. They rely on those who have been affected to help. Aren't they lucky that I have a brain tumour? Not because I'm raising money from my driveway or from the comfort of my couch (my next fundraising idea) but because I love to help. When I was first diagnosed, I had no one to turn to. Friends and family were great support but they knew just as much as I did about brain tumours...nothing!!! I found the foundation on line, not because my Doctor, Neurologist, or Neurosurgeon suggested it. I found it because I went looking. There is something seriously wrong with that picture. There is a huge resource out there to support the 27 Canadians who will get diagnosed today, and no one told me about it. Not fair!! We NEED a national data base in Canada, we need the health care system to work with Foundations like these. Research as important as it is, is only part of the picture. Someone needs to reach these 27 Canadians and ask them "are you ok,I know what you are going through" Wouldn't it be a perfect world if a patient's mental health was valued as much as their physical?
So how much has my brain tumour cost, mentally? More then I can ever put into words. What I can do is use my rather "large presence" in this "petite body" (in other words...big mouth) to let people know that there is support, there is help and there is someone who understands what you are going through. I will do what I can to help out financially through fundraising so that the Foundation can reach one more person. Even if that's $215.15 at a time.
Thursday, October 10, 2013
One Canadian's Brain
I haven't written in a bit as honestly, I haven't been feeling the best. The definition of recovery is a return to "normal" state. Hmm I don't really remember what that "normal" was but I can tell you I feel like I'm slipping backward and not returning to anything. What has returned is daily headaches and sharp pains in the head. Nausea (which is new and NO I am NOT pregnant) and some odd "occurrences" has me thinking a trip to the good old Doc tomorrow is in order. So in the month that I should be speaking the loudest about brain tumour awareness, I find myself not in my best state. I do feel that since I started pouring out my feelings, anger and love for all that is involved in recovering and living with this brain intruder, I have raised some awareness.
One thing that I did get accomplished in the past 10 days is I posted a letter to government through the Brain Tumour Foundation of Canada's website. It's called Let's tell Government and is aimed at letting our elected officials in Canada know that Brain Tumour research is critical. The Brain Tumour Foundation would like to have 837 letters sent to Government which represents the 837 people who will be diagnosed this month with a brain tumour. So far we have 71. This form is simple, it's easy and YOU don't have to be a brain tumour survivor, YOU just have to want to inspire change. Maybe someone close to you has a brain tumour HINT HINT!!!!! So for example: Primary brain tumours (That's me) in Canada are not accounted for. Yes that's right my brain tumour was not counted. In fact Canada uses data from the US to calculate or approximate the amount of people we have here with Brain Tumous. Umm, I'm not a scientist, I'm not a Doctor, nor am I a researcher but I am a brain tumour survivor and here is what I had to say to government:
October 3 2012, the day I was told I had a brain tumour, the day my journey with the Health Care System truly began. I am grateful for all the care I have received so far and as I prepare for radiation treatment I continue to be grateful. I have had a long recovery and lots of time to read about Brain Tumours and their impact on so many lives. I am a born and raised Canadian, living with a primary brain tumour that was only partially operable and not at all accounted for. I'm asking you, our elected officials, why my brain tumour doesn't count? More research is needed to aid in the development of The Canadian Brain Tumour Registry. We have no accurate Canadian data, this needs to be changed. I'm asking you today to hear my voice, because my brain tumour counts.
I have received a couple of responses back but only one that was personalized, it was from Gerry Rogers, The House of Assembly in good old Newfoundland. Thank you Gerry for taking the time to read and respond to my plea for change. You too can write to Gerry and all the other elected officials about Brain Tumour research, the need for a Canadian Brain Tumour Registry, access to treatment options or to simply say you know someone with a brain tumour. Chances are I'm not the only person you know who has been affected by one. One voice to the government is like a whisper, many voices produce change, please click here and fill out this simple form It only takes 5 minutes and you will be helping approximately 55,001 Canadians living with a brain tumour raise much needed awareness. By the way I'm the 1, The Fifty Five Thousand and ONE Canadian, because my brain tumour counts
One thing that I did get accomplished in the past 10 days is I posted a letter to government through the Brain Tumour Foundation of Canada's website. It's called Let's tell Government and is aimed at letting our elected officials in Canada know that Brain Tumour research is critical. The Brain Tumour Foundation would like to have 837 letters sent to Government which represents the 837 people who will be diagnosed this month with a brain tumour. So far we have 71. This form is simple, it's easy and YOU don't have to be a brain tumour survivor, YOU just have to want to inspire change. Maybe someone close to you has a brain tumour HINT HINT!!!!! So for example: Primary brain tumours (That's me) in Canada are not accounted for. Yes that's right my brain tumour was not counted. In fact Canada uses data from the US to calculate or approximate the amount of people we have here with Brain Tumous. Umm, I'm not a scientist, I'm not a Doctor, nor am I a researcher but I am a brain tumour survivor and here is what I had to say to government:
October 3 2012, the day I was told I had a brain tumour, the day my journey with the Health Care System truly began. I am grateful for all the care I have received so far and as I prepare for radiation treatment I continue to be grateful. I have had a long recovery and lots of time to read about Brain Tumours and their impact on so many lives. I am a born and raised Canadian, living with a primary brain tumour that was only partially operable and not at all accounted for. I'm asking you, our elected officials, why my brain tumour doesn't count? More research is needed to aid in the development of The Canadian Brain Tumour Registry. We have no accurate Canadian data, this needs to be changed. I'm asking you today to hear my voice, because my brain tumour counts.
I have received a couple of responses back but only one that was personalized, it was from Gerry Rogers, The House of Assembly in good old Newfoundland. Thank you Gerry for taking the time to read and respond to my plea for change. You too can write to Gerry and all the other elected officials about Brain Tumour research, the need for a Canadian Brain Tumour Registry, access to treatment options or to simply say you know someone with a brain tumour. Chances are I'm not the only person you know who has been affected by one. One voice to the government is like a whisper, many voices produce change, please click here and fill out this simple form It only takes 5 minutes and you will be helping approximately 55,001 Canadians living with a brain tumour raise much needed awareness. By the way I'm the 1, The Fifty Five Thousand and ONE Canadian, because my brain tumour counts
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