Tuesday, October 29, 2013

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.

Thursday, October 24, 2013

This Ain't No Magic Mushroom

The path was soft under her feet, so much so that she stopped to look down as her feet sunk into the grey walkway. As she followed the twists and turns her coral and blue skirt danced behind her as if a mild sea breeze was facing her.  She thought it was so odd for it to be breezy in an enclosed area.  As she followed the path, movies played, people laughed and images of familiar people appeared beside her.  The enclosed area became very dark as she had to duck to enter a room.  There before her was this huge ball, as she got closer it became clear that it was a mushroom.  She stood still for a moment and gazed around catching her reflection in the mirror, the reflection was me.   I was walking the path, I was wearing the coral and blue skirt I was inside my own head and there before me was the answer to my question about my brain tumour.  All these Doctors and all these specialist, and I, little ole me, figured it out, tumours are mushrooms.  I start screaming "let in some light, the light will kill the mushrooms"  I think I'm so cleaver having figured out what thousands couldn't.

And then, I woke up.  I don't sleep well, and I don't dream much, perhaps it's the meds but this dream was as real as this computer I'm typing on right now.  Clear as a bell and sadly disappointing that it was "just a dream"  Perhaps my mind is working over time as I prepare for my 4th MRI on November 4th.  It's been almost 10 months since my surgery.  Will it look the same as post surgery, did the tumour they left behind grow?   If only the upcoming radiation was as simple as opening the curtains to let in some light.  Ugh, tumours are hard on the head!!!!

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.

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

Thursday, October 3, 2013

You Have A Brain Tumour

October 3rd, here it is, the day one year ago I heard the words, "you have a brain tumour".  Shock was quickly replaced with uncontrollable sobbing, unable to catch my breath.  I don't remember the last time I cried like that.  Fear is a horrific emotion.  Today, one year later, the fear is still there but more so due to the unknown.  I was wondering how I was going to feel today and I can honestly say that my stomach is nauseous.  Kind of silly, it's just an anniversary, but like any anniversary good or bad it can spark emotions.   I guess things would be different if my life was "back to normal" but here I sit, still recovering, still feeling like crap most days.  Have you ever whacked your finger really hard, closed it in a car door?  Every time you drop your hand it throbs and hurts so much that you raise your hand to your chest for relief.  Well my head does that, right in the mastoid bone, which is just below the hole in my head.  I'm sure you can see the problem, there is no place to raise your head, to stop the throbbing.  Everyday I live with this, throw in some good headaches, some shocks to the eyeball, eyebrow and lately the teeth and you got yourself a recipe for exhaustion.

So what is the solution?  A better attitude today might help me, be thankful, upbeat, keep positive, are all things that make life easier to cope with.  However, some days like "you've got a brain tumour day", I just want to be me for me.  Not the "everything is ok" me that I do for everyone else, so we all cope. I'm allowed that day once a year.

Tuesday, October 1, 2013

A Spicy Start To October

If someone asked me one year ago today October 1st 2012, what the best part about October was, I would have said the following, the smell of Autumn, the changing leaves, the crisp morning air and it's when Tim Hortons brings out their pumpkin spice muffins.  Yup, those are my October favorites, NOW the best part is, sharing the fact that October is Brain Tumour awareness Month (ok I also love Tim's pumpkin spice muffins, they are the best)  So this morning there is so much I want to share, like the fact that 27 Canadian are diagnosed with a brain tumour EVERYDAY and I was one of them on October 3 2012.  At the time, I had no idea that October was Brain Tumour Awareness Month, and didn't for some time.  I can tell you it's a horrible way to find out.  What I can also tell you, is that day changed my very being, it rattled my soul and erupted a fear inside me I didn't even know was possible.  I will forever be changed by that day. It's the first time in my life that I have ever stood still, paralyzed by the unknown. Life however, does carry on, and I'm very thankful for that.  It's not the life I saw at 41, but like any life changing event you find the positives and try and focus on what the soul needs.  Today, the soul needed a pumpkin spice muffin and that is exactly what the soul got.