Wowzers what a week. Monday started off with me being interviewed by the most watched morning TV show in Atlantic Canada, CTV Morning Live. The thought of live TV terrified me, what if my brain just can't find the words I want to say! However, Heidi Petracek, the co-host made the whole experience so easy. She is a ball of energy that you can't help but feed off of. So pretty much what I had planned to say didn't really happen but I'm pleased with what did end up coming out of my mouth. Any awareness about brain tumours, The Brain Tumour Foundation and the Halifax Spring Sprint was worth the risk of possibly going mute, crying or even getting sick on live TV. Luckily none of that happened :)
Tuesday had me entering the iconic CBC Radio Building in Halifax for an interview with Don Connolly of Information Morning. This interview being taped, I thought it would be that much easier, I was wrong. Mr Connolly certainly is a great conversationalist and made the interview a wonderful experience. However, my brain was certainly in overdrive. I have described my brain in the past as a large set of filing cabinets, each containing well organized information. I've also written a blog post explaining that brain surgery is like someone has gone into those filing cabinets and dumped them, mixing up a well organized system. I continue to reorganize these imaginary files everyday but they are by no means anywhere close to what I once had. So my interview had me scrambling to find the words I wanted to use, the information I wanted to share, the message I wanted to portray. I was actually surprised when I heard it Thursday morning, although there is so much more I could have said, it wasn't bad for having a disorganized brain.
Although these two events were just minutes out of each day, they certainly were a stress that I'm not accustomed to. Sounds kind of funny as one would think the stress of having a brain tumour would compare, but media is kind of a one shot deal. The brain tumour, well, I've been carrying it around knowingly for a year and half now, so I'm getting used to it's weight on my soul. Last evening however, my tumour had one of it's toddler temper tantrum fits and decided to throw a very powerful, long lasting hit of trigeminal neuralgia my way. Trigeminal Neuralgia is painful shocks to the face, eyes, teeth, anywhere those trigeminal nerves run along the face. As I've said before, although I experience it everyday, the complication from surgery which has my right side of my face almost completely numb, has been a benefit from the debilitating shocks. However, I do have places on my face I feel and did I ever get slammed last night. This shock stayed on, like someone had turned on a light switch and lasted for a good minute. That may not seem long to someone who has never experienced lightning striking your face, but to those who know this pain, a minute is an eternity. It actually scared me and I've taken it as a warning that over doing it is never in my best interest. Today, my face is certainly getting zapped but nothing in comparison to last night. Today has now become a rest day.
Tomorrow is the big day, Spring Sprint day. It's a fun family run that is not timed but rather a gathering of brain tumour survivors with their family and friends who can run or walk 2.5km or 5km. It is also a place for family and friends to gather to remember those they have lost, to honour their memory, to get comfort. I will be there with my amazing little family and my wonderful friends who together we have formed the Recovery Roadsters. I am honoured and grateful to have them walking Recovery Road with me, not just the 2.5 km but everyday. I am so blessed. Ironically Monday has me sliding in that MRI tube once again for my next brain "check up." Of course the stress of this is weighing on my mind. On twitter, those of us in the brain tumour community # "hashtag" it as #scanxiety, a made up word by a lady in the UK, that couldn't be more accurate. Anyone who has to have regular MRI for whatever ails you, would understand the anxiety that comes with it and the stress of waiting for the results. Sigh!!! So what do I have on the go for Tuesday? A massage, a well needed, well deserved massage.
If you would like to donate to the Recovery Roadsters you can do so by visiting my donation page here. My family, friends and my misbehaving tumour, thanks you
Showing posts with label fear. Show all posts
Showing posts with label fear. Show all posts
Friday, May 9, 2014
Saturday, January 11, 2014
365 Days of Recovery
It's here, the one year anniversary of Brain Surgery. This time last year I was in the OR, having my brain tumour "debulked" . I created a video in honor of my 1 year anniversary and while I'm pretty confidant that it will not win an Oscar, it will remain unpublished for some "tweaking" Not to be confused with "twerking" there will be NO twerking in that video. So, here in no particular order is what I've learned in the past 365 days?
That brain surgery as necessary as it is, Sucks!!
That a brain tumour is simply a mass of cells who get together and plan an "out of control teenage party" in your head. As much as you think you can clean up the broken pieces, you just can't replace some of the valuables.
That the first few weeks of recovery were nothing like I had expected.
That the next few months of recovery were nothing like I had expected.
That the word " Time" became as much a part of me as my brain tumour itself.
That being Canadian is something to not only be proud of, but to be grateful for.
That LOVE is "in sickness and in health"
That you learn very quickly who the important people are in your life.
That the above statements truth was a powerful enlightenment.
That you can have a headache everyday.
That I will not let my brain tumour define me.
That my brain tumour has now become a big part of who I am and that's OK.
That people have an expectation of when you "should" be better.
That my brain thinks differently now and I find that fascinating and frustrating.
That being home with my kids for the past year is a silver lining in all of this.
That I thank God for each day.
That expressing my thoughts into words is like putting a jig saw puzzle together every day.
That life as I knew it does not exist anymore.
That I'm grateful for all my specialists.
That my life is great, even with teenagers partying in my head.
That perspective is way bigger then what we perceive.
That I took my perfect vision for granted, learning to live with double vision is interesting to say the least.
That Doctors are busy, the health care system is tasked and at the end of the day it's a business like any other business.
That MRI's are hateful and I still don't sleep the night before.
That Canada is NOW working towards counting every Brain Tumour, but it will take time.
That benign brain tumours although depending on location can be just as life threatening as malignant ones.
That my children remain fairly silent and I fear they are angry at me for getting sick.
That this is to big for me to even understand so how could I ever expect my kids too.
That life is too short not to eat Gluten every now and then, even when I suffer the next day.
That blogging makes me feel good, brings out raw emotions and allows me to express this journey.
That I never expected side effects from surgery, even though it was brain surgery.
That I am grateful I am alive, walking and taking however, I'm sick of my other symptoms being down played simply because I'm alive.
That I've learned more about myself in 365 days then in 40 years.
That having a hole in your head is just plain weird.
That I miss my job, my co-workers and the smell of 70% isopropyl alcohol and transpore/mircopore tape.
That science hasn't even come close medically to understanding the brain.
That in a perfect world Neurosurgeons would have brain surgery so they could truly understand that we are not all "text book" cases. Perhaps there will be an "app" for that someday.
That I'm not afraid some days.
That I am afraid the other days.
That I continue to raise my kids in a a silly, loving, off the cuff manner, hoping they will learn that strength can come from your weakest moments.
That watching your kids minds process the fact that mom couldn't get the fork to her mouth, was just as confusing for us all.
That I have come a long long way in 12 months and no intentions on slowing down.
That radiation scares me but know it's something I should probably consider.
That having two caring and considerate children is a product of good parenting and God's will.
That I sometimes wonder what I would be complaining about right now if I was healthy.
That I'm grateful to Global News for thinking that Canada not having a National Brain Tumour registry is "newsworthy"
That I sit in silence way more then I used to.
That I can't imagine a life without T Jay, I am grateful and thankful for his unconditional love.
That health should not be measured in weight and height but defined in a mental state.
That I'm the luckiest Woman and Mother in the world.
That I'm thankful for the Twitter community of #BrainTumorThursday and #BTSM for their support
That my problems are no different then your problems..
That our society defines you by the work you do, being a brain tumour survivor was not in the "career choices" book at school. Yet at the moment that is my full time job.
Hi my name is Kelly, I'm a Brain Tumour Survivor and I'm recovering one day at a time.
That brain surgery as necessary as it is, Sucks!!
That a brain tumour is simply a mass of cells who get together and plan an "out of control teenage party" in your head. As much as you think you can clean up the broken pieces, you just can't replace some of the valuables.
That the first few weeks of recovery were nothing like I had expected.
That the next few months of recovery were nothing like I had expected.
That the word " Time" became as much a part of me as my brain tumour itself.
That being Canadian is something to not only be proud of, but to be grateful for.
That LOVE is "in sickness and in health"
That you learn very quickly who the important people are in your life.
That the above statements truth was a powerful enlightenment.
That you can have a headache everyday.
That I will not let my brain tumour define me.
That my brain tumour has now become a big part of who I am and that's OK.
That people have an expectation of when you "should" be better.
That my brain thinks differently now and I find that fascinating and frustrating.
That being home with my kids for the past year is a silver lining in all of this.
That I thank God for each day.
That expressing my thoughts into words is like putting a jig saw puzzle together every day.
That life as I knew it does not exist anymore.
That I'm grateful for all my specialists.
That my life is great, even with teenagers partying in my head.
That perspective is way bigger then what we perceive.
That I took my perfect vision for granted, learning to live with double vision is interesting to say the least.
That Doctors are busy, the health care system is tasked and at the end of the day it's a business like any other business.
That MRI's are hateful and I still don't sleep the night before.
That Canada is NOW working towards counting every Brain Tumour, but it will take time.
That benign brain tumours although depending on location can be just as life threatening as malignant ones.
That my children remain fairly silent and I fear they are angry at me for getting sick.
That this is to big for me to even understand so how could I ever expect my kids too.
That life is too short not to eat Gluten every now and then, even when I suffer the next day.
That blogging makes me feel good, brings out raw emotions and allows me to express this journey.
That I never expected side effects from surgery, even though it was brain surgery.
That I am grateful I am alive, walking and taking however, I'm sick of my other symptoms being down played simply because I'm alive.
That I've learned more about myself in 365 days then in 40 years.
That having a hole in your head is just plain weird.
That I miss my job, my co-workers and the smell of 70% isopropyl alcohol and transpore/mircopore tape.
That science hasn't even come close medically to understanding the brain.
That in a perfect world Neurosurgeons would have brain surgery so they could truly understand that we are not all "text book" cases. Perhaps there will be an "app" for that someday.
That I'm not afraid some days.
That I am afraid the other days.
That I continue to raise my kids in a a silly, loving, off the cuff manner, hoping they will learn that strength can come from your weakest moments.
That watching your kids minds process the fact that mom couldn't get the fork to her mouth, was just as confusing for us all.
That I have come a long long way in 12 months and no intentions on slowing down.
That radiation scares me but know it's something I should probably consider.
That having two caring and considerate children is a product of good parenting and God's will.
That I sometimes wonder what I would be complaining about right now if I was healthy.
That I'm grateful to Global News for thinking that Canada not having a National Brain Tumour registry is "newsworthy"
That I sit in silence way more then I used to.
That I can't imagine a life without T Jay, I am grateful and thankful for his unconditional love.
That health should not be measured in weight and height but defined in a mental state.
That I'm the luckiest Woman and Mother in the world.
That I'm thankful for the Twitter community of #BrainTumorThursday and #BTSM for their support
That my problems are no different then your problems..
That our society defines you by the work you do, being a brain tumour survivor was not in the "career choices" book at school. Yet at the moment that is my full time job.
Hi my name is Kelly, I'm a Brain Tumour Survivor and I'm recovering one day at a time.
Thursday, December 19, 2013
Bubble Land
Sometimes I repeat myself and I don't remember even saying it. Apparently I do it a lot. I guess there is a possibility that I rewrite blogs. That would be kind of funny actually, especially if they were months apart. I'm sure they would have totally differently perspectives. I find that my attitude is very different now that I'm almost 1 year post op. I feel that in the beginning I was ecstatic at every little change and accomplishment. Every appointment brought hope. In the beginning there is an expectation that you will heal in the medical fields "determined amount of time" I, of course thought that I would be back to normal way beyond what they said. It's humbling to find out that healing is only partly in your control and slightly aggravating as well.
So I stand now in a different line, not the line where every Doctor wants a piece of you to get you back to your good old self. Nope, I'm standing in the "we'll see you in six months line" This line takes you right back home to sit and wait. And I do, in my bubble. I will admit I'm afraid to do things. Walking on ice has me looking like I'm 103 years old. T Jay said we should go skiing, and I said are you out of your mind? I'll go with you but I'll be in the lodge drinking hot chocolate. I just don't think I will ever ski or skate again simply out of fear. I'm afraid of banging my head. Now that this tumour thing is stretching into it's 3rd year as it all started in June of 2011, when I tried to take up jogging again. Bam, welcome Trigeminal Neuralgia to my life. My tumour saying hello, and oh by the way I've got your cranial nerves all wrapped up. This tumour is stubborn, not unlike it's owner, and won't leave, can't leave because he's hanging out with the carotid artery. I saw the pictures, I've painted my own picture in my head and the thought of falling and rattling that intruder around scares the life right out of me. So I sit in a fearful bubble, a place that is very unfamiliar to me. I need to learn to like Bubble Land or move out...or perhaps it's move on.
So I stand now in a different line, not the line where every Doctor wants a piece of you to get you back to your good old self. Nope, I'm standing in the "we'll see you in six months line" This line takes you right back home to sit and wait. And I do, in my bubble. I will admit I'm afraid to do things. Walking on ice has me looking like I'm 103 years old. T Jay said we should go skiing, and I said are you out of your mind? I'll go with you but I'll be in the lodge drinking hot chocolate. I just don't think I will ever ski or skate again simply out of fear. I'm afraid of banging my head. Now that this tumour thing is stretching into it's 3rd year as it all started in June of 2011, when I tried to take up jogging again. Bam, welcome Trigeminal Neuralgia to my life. My tumour saying hello, and oh by the way I've got your cranial nerves all wrapped up. This tumour is stubborn, not unlike it's owner, and won't leave, can't leave because he's hanging out with the carotid artery. I saw the pictures, I've painted my own picture in my head and the thought of falling and rattling that intruder around scares the life right out of me. So I sit in a fearful bubble, a place that is very unfamiliar to me. I need to learn to like Bubble Land or move out...or perhaps it's move on.
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