I Think They Heard Me

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.

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

It's Best to Sit in The Back

Last week was a busy, which in turn means my mind needs this week to recover.  This truly has to be the oddest life experience I have ever had.  I just don't "work" like I used to.  My brain needs extra time for it's thoughts, my body needs extra time for it's daily chores and I'm figuring out that my soul needs extra time for itself.  Healing one's soul is not easy.  I take comfort in reading other's stories.  There is so much encouragement and understanding in the Brain Tumour Community that I find myself gravitating there.  All of these people and their families understand this roller coaster ride.  Days of feeling like you are almost yourself again, just to find out the very next day that exhausting once again took over your entire being.  I take comfort is learning from these families that they too experienced this and it's not easy, it's not fun, however, through positive thought you can make the best of it.  So, here I sit today on another #BrainTumorThursday wondering what I can contribute through social media that will help raise awareness.  Then I realize that the best place for me to be today is riding the back of the roller coaster, watching and listening to all the people in front of me who have already went up and down these hills.  I can learn from each and every one of you on this ride and for that I thank you.

#BTSM

Yes that's the Twitter tag for Brain Tumor Social Media, Thursday is here again.  A great way for information to get passed around about brain tumours and the important need to reach as many people as possible.  Now I'm not a Doctor, obviously, however, reading articles, speaking and connecting with others, sometimes shows that Brain Tumours are the final diagnoses in the long chain of events.  Why?  Is it the cost of MRI's, is it that sometimes a brain tumour has to cause a significant symptom before it is recognized that it's even a possibility.  Not everyone "smells burnt toast".  So here once again is a list of symptoms that could possibly mean you need to speak to your Doctor.  Thank you Brain Tumour Foundation of Canada for this information.

~Behavioural changes
~Cognitive changes
~Dizziness or unsteadiness
~Double or blurred vision
~Frequent headaches
~Hearing impairment
~Morning nausea vomiting
~Seizures
~weakness or paralysis

Remember brain tumours do not age discriminate, if someone you know and love has some, any or all of these symptoms, talk to your Doctor.

For me it was headaches, migraines with loss of vision, dizziness and finally, Trigeminal Neuralgia.  Not the diagnoses I ever wanted to hear but was certainly relieved that there was something causing the madness in my head.

Pain In The....

So the last little bit my Trigeminal Neuralgia sends "subtle" shocks to my cheek but nasty ones to my eye ball.  I can't feel my cheek or eye ball.  Nope...no feeling at all, none in my eye brow or forehead either.  But today I got sucker punched.  I can honestly say that nerve pain in places you can't feel is not only weird it's down right mean.  It's like having a bully live inside your own body.  This bully decided to stab me in the right eye brow, yes the one I can't feel.  It's exhausting and quite honestly I'm a little disappointed in my brain.  It's the whole I control you...no no you control me thing we have going on...brain vs Kelly.  Now if I was a betting women I would pick me, cause I'm a get out of my way I can do anything kind of girl...no chance for a brain.  However, I've heard rumours that this "brain" thing I'm up against has some pretty sly tricks up it's "cavernous sinus abutting the cerebellar peduncle"...ya that's short for a stupid location for a brain tumour....see "it" thinks it's soooo smart with all the fancy words but really I have "google" I can look that stuff up, which in turn makes me smarter then the brain.

To answer you question...NO I have not been drinking, just hanging out with the overly smart brain that thinks too much, which really is a pain in the.........

It's a # Kind of Day

It's #BrainTumorThursday.  The day when all my fellow survivors flock to twitter to raise awareness.  Last #BTSM (which stands for Brain Tumor Social Media by the way) talked about what a brain tumour is and how they can be Primary or Secondary, Malignant or Benign, any of these are a pain in the brain to say the least.

I get a lot of support from a couple of websites but the one I head to most often is Brain Tumour Foundation of Canada.  It is FULL of all kinds of useful information, support and others just like me.  I rely on their facts because they pertain to whats going on in my neck of the world, Canada.  So here is just a few unbelievable but true facts: (Thanks BTFC for this information)

~Every day 27 Canadians are diagnosed with a brain tumour.  EVERYDAY...think about it!!!
~There are 55,000 Canadians surviving with one in their head this very second
~There are over 120 DIFFERENT kinds of Brain Tumours.  Seriously 120+
~Primary brain tumours (which is what I have, we talked about that last week) occur in about 8 out of 100,000 people (I should buy a lotto ticket!!!)  The number rises to approximately 32 out of 100,000 when the metastatic tumours are included.
~In the first year after diagnoses (Mine will be October 3, which just happens to be Brain tumour awareness month by the way) the average patient will make 52 visits to their health care team (These can include Neurologist, Neurosurgeons, radiation, blood work, physio the list goes on and on)
~Brain tumours are the leading cause in solid cancer death of children under the age of 20.  Now surpassing acute lymphoblastic leukemia. Third leading cause in solid cancer deaths in adults age 20-39
~Because brain tumours are located in the "command centre" of the body, emotions, thought processes, movement and life in general, they can dramatically affect an individuals life.
~Currently the Canadian Medical System does not tract primary brain tumour stats (hmmm What's up with that?)

As I've mentioned before I also frequent and I'm a member of It's Just Benign a site that is there to help those of us who have benign brain tumours, because they suck too!!!  I guess the point of today's post is to get the world out and educate.  Brain tumours are big, bad and scary but with the support network I've built and found through social media sites I'm coping and that's pretty awesome.

Brain Tumour Thursday

Although I've been walking around with what's left of my brain tumour for 7 months now.  I'm just figuring out that there is an entire social media world who dedicates Thursdays as Brain Tumour Thursday.  Throw a # in front of that with the American spelling and you get #braintumorthursday on Twitter  Who knew?  Obviously not me until today.  So I guess since I have one of these life changing blobs in my head I should jump on the Thursday band wagon and educate my followers.

Here's my first Thursday's contribution:

We will start with the basics today...What is a brain tumour?  It's a mass of abnormal cells in and around the structure of the brain.  There are primary and secondary brain tumours.  The difference is, primary originated from cells within the brain and stays there.  Secondary originated from cells somewhere else in the body, such as breast cancer.   Brain tumours are not well behaved little creatures and I will talk more about their teenage like behavior next Thursday.