Well here it is, my final entry as this week's guest blogger.
I've done my best to relay my experiences, lessons learned and humble wisdom throughout the week by showing you a glimpse of what I felt during the process and how I feel today. Each day has featured a different portion of the experience starting with the initial diagnosis and progressing to surgery and treatment and beyond. I've been able to summarize each leg of the journey with a moral or theme, but for today's final instalment, I'm afraid all I can do is tell you that I'm still trying to make sense of it all.
If you're fortunate enough to have a skilled medical team, a strong and loving family, supportive friends and an understanding employer and ultimately wind up where I am today then there is no better bit of advice than; savour the moment and make the most of your time on this planet.
Sound advice for anyone really, but it can be taken to extremes for those who survive this type of lift-altering event. So while I'm still very much at a loss to make sense of the entire story, I have become aware that it's important to pace yourself.
Cancer survivors and no doubt anyone who has survived a serious trauma may feel an increased desire to make up for lost time. To make every decision count. To do something grand. To live and love to the fullest and to leave a legacy. These are all laudable ambitions but it's important to remember that a lifetime is measured in little moments not in grand gestures and not a single one of us gets to choose how we'll be remembered.
Let me recap my own experience...
I was diagnosed with synovial cell sarcoma in my head and neck last May. The surgery involved cutting a line down the centre of my chin, along the jaw line and on to my right ear. Then the bone was cut in the middle so that my jaw could be split in two, allowing my surgeon access to tumour. The original plan was to have me sewed up and on the road to recovery within a few weeks. What happened next surprised everyone except me. Post operative pathology revealed the tumour was a fairly aggressive type of cancer meaning I would have to undergo radiation as quickly as possible. It's the last thing anyone wants to hear but perhaps more difficult than the news itself was having to share it with loved ones. It's difficult to tell those who care about you that you're facing such a difficult battle because in the end, those closest to you will have to fight it as well and I hate to be a burden. Everyone was shocked but steadfast in their support of me and my fight. Anything less than resounding success wasn't even considered a possibility. We would beat this together and that was the end of the debate.
The recovery from surgery was long and frustrating. It left me with very limited mobility in my jaw making it difficult to eat. Then radiation began and what tissue hadn't been damaged by the surgery was ravaged by the lethal rays shot through my body. My sense of taste vanished, the muscles hardened and my voice changed. After six weeks of treatment and some decidedly unhappy days, I was relieved to begin the real recovery stage. From that point on, I would be extra vigilant in matters of health. I would exercise more, eat better and reduce my exposure to stress. As much as my life may have been irreversibly altered, it would go on.
And that brings us back to the present. You see, I decided that not only would my life go on, but it would mean more. I had to extract every possible ounce of "living" out of my life to ensure that I would have no regrets if my health was ever threatened again. I made ambitious new career plans, expanding my existing role in media to one I hope will be much more challenging in the near future. I proposed to my beautiful girlfriend, ensuring that not one more day would pass without making her aware of how much I love her. I made a promise to speak more opening with family and friends about emotions so that no conversation was ever left unfinished. I made a pledge to give more back to the community which had so unexpected supported me. That decision led me to getting involved with the Ottawa Regional Cancer Foundation and in addition to this I am planning more volunteer work and acts of philanthropy. I'm making plans to travel more, compromise less and to go to bed proud of myself each and every day.
But that's a lot of pressure to bear and as I soon discovered, it's unrealistic to expect that everyday will be memorable and exciting. There's no question that surviving a trauma helps to refocus the mind but it doesn't leave you with super powers. You must remember that above all else, you're still a human being.
Once I realised that I had created unrealistic expectations I also realised that it was all just a coping mechanism. Subconsciously I had given myself a long list of busy-work to take my mind off the fact that I didn't fully recognize the man looking at me in the mirror. He looked frail and uncertain and any attempt to convey independence and confidence was betrayed by a very visible scar that ran down the centre of his face. I realised I had lost a part of myself in the process of fighting my cancer and I thought I might never get it back. All the optimism in the world would never make me whole again. All the goals and ambitions couldn't change the fact that my mortality was as plainly obvious as the nose on my face.
But I've discovered that what matters more is that I have gained far more than I lost. My respect for the humanity of others increased tenfold thanks to the unprecedented generosity and support of my family and friends. My profound admiration for the dedication and selflessness of the medical community inspired me to be a better person. My newfound appreciation for the fragility of life prompted me to tell those around me how I feel and it focused my motivation on achieving my goals. The experience taught me that for all I had lost, I had still been given some precious gifts to share. The power of positive thinking is now more important to me than ever but not in the sense that we humans have special healing abilities. No, the power of my positive thinking pushes me to leave the world a bit better than I found it because we are all fighting the battle of our lives every day. There will always be those who face challenges greater and smaller than you or me. None of us know what lies ahead and the beauty of this thing called life is how much more precious it can become once you are aware of how fragile it is.
My battle with cancer continues. It is no more and no less relevant than any other battle, but it has taught me to live in the present, to love more and to work harder. I have the luxury of working in a position that grants me a louder voice than others. I am a radio broadcaster and as such I will advocate for others who can't speak as loudly. I am a young man and as such, I will work hard to achieve my goals while doing my best to lead by positive example. I am engaged to a beautiful woman and as such I will honour her until my last breath. I am a good friend who has received the love of good friends and as such I will be there to return the favour whenever it might be needed. My battle with cancer continues and it makes me stronger everyday. Courage is founded in belief that you are doing the right thing. Working together to fight cancer, supporting each other and learning from the experience are all good things.
For whatever reason you've come here to read these blogs I hope they have given you something useful. Good luck to you and yours.
Friday, March 12, 2010
Thursday, March 11, 2010
Treatment Options
The funny thing about getting healthy is how most of it isn't funny at all. In fact a good deal of it is downright unpleasant. The part that no one really warns you about is how treatment and follow-up care is actually harder to deal with than the diagnosis, the surgery or the emotional trauma. I'm sure it varies for everyone but the one constant is the ever present nature of treatment. It doesn't matter if you're prescribed radiation or chemotherapy or a combination of the two; the one fundamental truth of the process is that it will be a lengthy and on-going ordeal and the effects of fatigue and pain are cumulative. Doctors, nurses, therapists and other specialists do their best to warn you. They try to explain that everything will feel fine at first and then it will gradually become more and more difficult. But most do so with the sincerity and credibility that I would have trying to talk someone through landing a jumbo jet. You see, I've never flown a plane so my advice wouldn't carry much weight.
So you can prepare for the inevitable and you can remind yourself of why you must endure the process, but in the end there will be days when you question everything.
For me, the questions began to fly about mid-way through my radiation treatment. For those who are unfamiliar with the process, radiation has the effect of slowly killing cells in a prescribed area. The drawback is that as many healthy cells die in the process as diseased cells but the procedure is based upon the theory that the good cells will regenerate whereas the sick cells will not. After undergoing 13 of the 33 treatments I was prescribed, I called the hospital and told them I would not be coming back for treatment number 14. I said I was having second thoughts about continuing the process because the side effects were taking a heavy toll and I was concerned about the long-term implications of what we were doing. My concern was prompted by a shockingly sudden loss of ability to taste anything. It was as though my tongue had simply been removed and I couldn't enjoy the simple pleasure of eating. That concern turned into outright fear when the lack of sensation was replaced by a foul and rotten taste that made it virtually impossible to eat. In addition to that, my skin was becoming severely and painfully irritated, I had no fewer than a dozen canker sores and my sense of smell was being affected. The radiation to my head and neck was damaging nerves in and around my mouth and I came to the conclusion that I wasn't prepared to live if every single meal was going to feel like torture. I began researching the side effects of head and neck radiation online and discovered that I would face a lifetime of mouth ulcers, increased likelihood of cavities, gum damage, tooth loss and vocal cord damage. I was keenly aware of the rarity and seriousness of my condition and that I had to do everything in my power to ensure the cancer was gone. But at what price? At what point do you exchange living for existing? How far into that compromise was I prepared to reach?
So once again, I turned to the realm of social media for guidance. I figured I had shared so much of myself with my friends via our online relationship that maybe it was time I asked them to reciprocate.
And boy did they.
So today I share with you not my own blog entry, but rather what my friends shared with me. Sympathetic, cautious and hypothetical as were most of the responses, those who wrote to me that day will never understand the depth of gratitude I have for their thoughts. I asked an impossible question and what I got in return was some of the most sound advice I could have hoped for.
September 21, 2009:
K.S. wrote "Would stopping radiation now really give it a better chance of it coming back, or would it put your life at greater risk? This is YOUR tour on this Earth. I really think you are precious and I know that others who love you feel the same. We want you in our lives for as long as possible. You may not be able to smell the air after a rainfall, but you would still be able to feel the air on your skin and listen to the birds singing and roll down the grassy hill and see the world around you."
O.W. wrote "At the risk of giving incredibly bad advice, I would knock it on the head and hope for the best."
J.H. wrote "Pretty tough question to answer my friend. I'm not sure that anyone really knows what they would do until faced with it. I will say that whatever you decide will be right for you and I will support your decision. I can say that seeing a bit of what it is like just from being around you that not tasting things is a lot worse than many people might think. In the end you are in charge of you. "
A.S. wrote "My personal opinion is - you should ask yourself how badly you want to be here and if the answer is that you want to be around then you should follow the specialist's advice on how to do just that."
S.G. wrote "I don't think there is a wrong choice either way. It's just a tough choice. A doctor's job is to keep you alive as long as possible. Your job is to choose how you want to live. Not many here are willing to offer what they would do for fear of it changing your mind with possible negative results. People make smart choices based on facts. You have none to base this on other than success percentage, and even that's not a guarantee. It's like asking what day will I die on and what will kill me? Booze, smokes, red meat a bus or heart attack. Who knows. We can't choose the way we die, only how we live. How do you want to live?"
G.E. wrote "The world has a plethora of possibilities that go beyond taste and smell. There are wonderful sights left to see. There are unbelievable sounds to hear. There are friendships and family.
I don't know what I would do. But I know that, despite the losses, there is a worse fate. In truth, it is you who must overcome those loses and learn to get by without them if they remain permanent. The question really is about your willingness to take on that fight. And you, sir, are a fighter. Not an easy choice. Be well Greg, I'll support whatever decision you make."
---
There were many, many more entries encouraging continued radiation and advising against it but all promised to support whatever decision I made in the end. I chose these six messages because they resonated with me the most. Some in their simplicity and some in their underlying wisdom. I opted to return to treatment the following day and finish the course of 33 radiation treatments as had been prescribed because in the end there are no guarantees for anything in life. The loss of taste, the pain and the long-term side-effects might all have continued with or without the treatment but the one certainty I had was that my chances of getting sick again would be greater. My friends gave back to me that which I had lost along the way; my perspective. They reminded me of the scope of my problem and the gravity of the choices to be made. Mostly they reminded me that we are all fragile, sometimes indecisive and always vulnerable but we are never alone. Whether in grief or in support, never be afraid to reach out with your hand, you might be surprised by who reaches back.
So you can prepare for the inevitable and you can remind yourself of why you must endure the process, but in the end there will be days when you question everything.
For me, the questions began to fly about mid-way through my radiation treatment. For those who are unfamiliar with the process, radiation has the effect of slowly killing cells in a prescribed area. The drawback is that as many healthy cells die in the process as diseased cells but the procedure is based upon the theory that the good cells will regenerate whereas the sick cells will not. After undergoing 13 of the 33 treatments I was prescribed, I called the hospital and told them I would not be coming back for treatment number 14. I said I was having second thoughts about continuing the process because the side effects were taking a heavy toll and I was concerned about the long-term implications of what we were doing. My concern was prompted by a shockingly sudden loss of ability to taste anything. It was as though my tongue had simply been removed and I couldn't enjoy the simple pleasure of eating. That concern turned into outright fear when the lack of sensation was replaced by a foul and rotten taste that made it virtually impossible to eat. In addition to that, my skin was becoming severely and painfully irritated, I had no fewer than a dozen canker sores and my sense of smell was being affected. The radiation to my head and neck was damaging nerves in and around my mouth and I came to the conclusion that I wasn't prepared to live if every single meal was going to feel like torture. I began researching the side effects of head and neck radiation online and discovered that I would face a lifetime of mouth ulcers, increased likelihood of cavities, gum damage, tooth loss and vocal cord damage. I was keenly aware of the rarity and seriousness of my condition and that I had to do everything in my power to ensure the cancer was gone. But at what price? At what point do you exchange living for existing? How far into that compromise was I prepared to reach?
So once again, I turned to the realm of social media for guidance. I figured I had shared so much of myself with my friends via our online relationship that maybe it was time I asked them to reciprocate.
And boy did they.
So today I share with you not my own blog entry, but rather what my friends shared with me. Sympathetic, cautious and hypothetical as were most of the responses, those who wrote to me that day will never understand the depth of gratitude I have for their thoughts. I asked an impossible question and what I got in return was some of the most sound advice I could have hoped for.
September 21, 2009:
K.S. wrote "Would stopping radiation now really give it a better chance of it coming back, or would it put your life at greater risk? This is YOUR tour on this Earth. I really think you are precious and I know that others who love you feel the same. We want you in our lives for as long as possible. You may not be able to smell the air after a rainfall, but you would still be able to feel the air on your skin and listen to the birds singing and roll down the grassy hill and see the world around you."
O.W. wrote "At the risk of giving incredibly bad advice, I would knock it on the head and hope for the best."
J.H. wrote "Pretty tough question to answer my friend. I'm not sure that anyone really knows what they would do until faced with it. I will say that whatever you decide will be right for you and I will support your decision. I can say that seeing a bit of what it is like just from being around you that not tasting things is a lot worse than many people might think. In the end you are in charge of you. "
A.S. wrote "My personal opinion is - you should ask yourself how badly you want to be here and if the answer is that you want to be around then you should follow the specialist's advice on how to do just that."
S.G. wrote "I don't think there is a wrong choice either way. It's just a tough choice. A doctor's job is to keep you alive as long as possible. Your job is to choose how you want to live. Not many here are willing to offer what they would do for fear of it changing your mind with possible negative results. People make smart choices based on facts. You have none to base this on other than success percentage, and even that's not a guarantee. It's like asking what day will I die on and what will kill me? Booze, smokes, red meat a bus or heart attack. Who knows. We can't choose the way we die, only how we live. How do you want to live?"
G.E. wrote "The world has a plethora of possibilities that go beyond taste and smell. There are wonderful sights left to see. There are unbelievable sounds to hear. There are friendships and family.
I don't know what I would do. But I know that, despite the losses, there is a worse fate. In truth, it is you who must overcome those loses and learn to get by without them if they remain permanent. The question really is about your willingness to take on that fight. And you, sir, are a fighter. Not an easy choice. Be well Greg, I'll support whatever decision you make."
---
There were many, many more entries encouraging continued radiation and advising against it but all promised to support whatever decision I made in the end. I chose these six messages because they resonated with me the most. Some in their simplicity and some in their underlying wisdom. I opted to return to treatment the following day and finish the course of 33 radiation treatments as had been prescribed because in the end there are no guarantees for anything in life. The loss of taste, the pain and the long-term side-effects might all have continued with or without the treatment but the one certainty I had was that my chances of getting sick again would be greater. My friends gave back to me that which I had lost along the way; my perspective. They reminded me of the scope of my problem and the gravity of the choices to be made. Mostly they reminded me that we are all fragile, sometimes indecisive and always vulnerable but we are never alone. Whether in grief or in support, never be afraid to reach out with your hand, you might be surprised by who reaches back.
Wednesday, March 10, 2010
Acceptance and Moving Forward
We're already at the mid-way point of my blog experience and having read through several entries written by others I feel ill-equipped to add to wealth of experience and wisdom found on this site. But in my own feeble way, allow me to invite you to carry on with me through my experience. Up to this point I've recounted how I was initially diagnosed with a seemingly benign lump inside the right corner of my mandible. Nothing nefarious evidently, just a mass of cells growing in an inconvenient location for no apparent reason. I underwent surgery which involved cutting my jaw bone in half allowing the surgeon to splay the lower portion of my face wide open, providing access to the tumour. It was described as an aggressive surgery to say the least but I was reassured that it was also routine and I could expect to return to normal life within weeks.
What happened next changed everything.
My journal entry from August 11th, 2009:
It's funny how your body intuitively knows things. You may not have the medical expertise to accurately describe what's ailing you or even understand the nature of the problem, but you know when something is wrong. Somehow we just instinctively know when something is out of the ordinary. Serious. Perhaps life-threatening.
I write this a couple of hours after my post-surgical follow-up exam to discuss my recent surgery. That surgery involved cutting my jaw bone in half to remove a paraphalangeal tumour behind the right corner of my jaw. The surgery was a success and the doctor feels he was able to remove the entire mass and the initial biopsy revealed no worrisome findings. Just a lump of tissue that grew out of control for some reason.
As it turns out, some very complex pathological testing has revealed something else. You see, the doctor was concerned in the days leading up to my surgery because the tumour suddenly grew by a considerable amount and this was accompanied by equally considerable pain. It seems that concern was well founded. The tumour was malignant. I have cancer.
Funny how that looks in print. Even stranger is the sensation of typing it. I don't really know what it means. It's such a nebulous, all-encompassing disease that spells certain death for some while sparing others to a routine treatment regimen only to return them to their normal lives with a newfound sense of appreciation for the fleeting nature of life. I don't know where mine falls on that scale. I don't know how long that question will loom over me or if it will ever truly be answered. I don't know much about what the next few months have in store for me.
Having already been through an aggressive surgery to remove the tumour and having had a few months to consider the possibilities, I'm not entirely surprised by the news. I've skipped over the denial and depression and sadness stages and moved directly to anger. That's probably normal. News like this tends to reduce the entire world down to a little sphere that surrounds you and the air inside is filled with the sour smell of unfair deal. Why me? Why anyone for that matter?
I've always considered serious illness to be a fact of life, not something to be treated with much emotion. I still feel that way. Bad things happen to good people and bad people and getting upset about it won't change anything. In fact a big emotional outburst will only serve to make all those involved feel silly afterwards. I don't want any special treatment or consideration. Like my original note on the tumour a few months ago, I'm only writing this so all my friends are aware of what's going on. But I am angry about it, despite myself.
So, I'll meet with an oncologist to discuss my treatment options. Most likely it will be a radiation session that involves getting zapped in the skull every day for six weeks. The side-effects are not much fun but at least no one will notice the hair loss. I'll have to have several full-body scans to ensure the cancer hasn't spread to other areas, after all, it was part of my glandular system which makes it quite easy for the bad cells to spread around the body. I won't be able to return to work as soon as I'd hoped and I won't be able to honour any of the social commitments that I was looking forward to. I will truly miss seeing those of you who had special plans that involved me this summer and I wish you the very best without me.
Cliché as it may be, I have no intention of letting this thing alter my life over the long term. I will get back on my feet and I will return to work and I will still be the same guy you've always known. There's a belief that once you tell people you have cancer, that's all they can see. If I can ask anything of you as my friends, it's that you don't let me see an ounce of pity or sadness in your eyes. I'm carrying on as I always would and I expect you to do the same. There are far worse things in life than what I'm dealing with, so please, let's all just get on with our lives and look forward to a bright future.
As for the short term, I have little choice but to yield to the medical experts who seem confident that they can fix this. I've been told that my condition is so rare that the Ottawa General has documented ten cases...in its history. So despite the uncharted nature of this problem, I will place my faith in the doctors hands. I'll place my faith in the goodwill of my family and friends. I'll place my faith in my own stubbornness and determination to get my way at all costs.
You are all precious to me in your own unique way and many of you to each other. Don't be afraid to share that with those you care about most. You never know what tomorrow may bring.
---
Unlike my previous posts, I don't have anything to add to this one. There's no moral or lesson beyond what's already been written here. I still read this and remember how I felt the day I was given the bad news. I still remember being surprised that I felt sorry for myself only for a few minutes before I decided to get on with living, fighting and winning. Acceptance is fundamental but once you come face to face with the monster you have little choice. After all, denial won't make it go away.
What happened next changed everything.
My journal entry from August 11th, 2009:
It's funny how your body intuitively knows things. You may not have the medical expertise to accurately describe what's ailing you or even understand the nature of the problem, but you know when something is wrong. Somehow we just instinctively know when something is out of the ordinary. Serious. Perhaps life-threatening.
I write this a couple of hours after my post-surgical follow-up exam to discuss my recent surgery. That surgery involved cutting my jaw bone in half to remove a paraphalangeal tumour behind the right corner of my jaw. The surgery was a success and the doctor feels he was able to remove the entire mass and the initial biopsy revealed no worrisome findings. Just a lump of tissue that grew out of control for some reason.
As it turns out, some very complex pathological testing has revealed something else. You see, the doctor was concerned in the days leading up to my surgery because the tumour suddenly grew by a considerable amount and this was accompanied by equally considerable pain. It seems that concern was well founded. The tumour was malignant. I have cancer.
Funny how that looks in print. Even stranger is the sensation of typing it. I don't really know what it means. It's such a nebulous, all-encompassing disease that spells certain death for some while sparing others to a routine treatment regimen only to return them to their normal lives with a newfound sense of appreciation for the fleeting nature of life. I don't know where mine falls on that scale. I don't know how long that question will loom over me or if it will ever truly be answered. I don't know much about what the next few months have in store for me.
Having already been through an aggressive surgery to remove the tumour and having had a few months to consider the possibilities, I'm not entirely surprised by the news. I've skipped over the denial and depression and sadness stages and moved directly to anger. That's probably normal. News like this tends to reduce the entire world down to a little sphere that surrounds you and the air inside is filled with the sour smell of unfair deal. Why me? Why anyone for that matter?
I've always considered serious illness to be a fact of life, not something to be treated with much emotion. I still feel that way. Bad things happen to good people and bad people and getting upset about it won't change anything. In fact a big emotional outburst will only serve to make all those involved feel silly afterwards. I don't want any special treatment or consideration. Like my original note on the tumour a few months ago, I'm only writing this so all my friends are aware of what's going on. But I am angry about it, despite myself.
So, I'll meet with an oncologist to discuss my treatment options. Most likely it will be a radiation session that involves getting zapped in the skull every day for six weeks. The side-effects are not much fun but at least no one will notice the hair loss. I'll have to have several full-body scans to ensure the cancer hasn't spread to other areas, after all, it was part of my glandular system which makes it quite easy for the bad cells to spread around the body. I won't be able to return to work as soon as I'd hoped and I won't be able to honour any of the social commitments that I was looking forward to. I will truly miss seeing those of you who had special plans that involved me this summer and I wish you the very best without me.
Cliché as it may be, I have no intention of letting this thing alter my life over the long term. I will get back on my feet and I will return to work and I will still be the same guy you've always known. There's a belief that once you tell people you have cancer, that's all they can see. If I can ask anything of you as my friends, it's that you don't let me see an ounce of pity or sadness in your eyes. I'm carrying on as I always would and I expect you to do the same. There are far worse things in life than what I'm dealing with, so please, let's all just get on with our lives and look forward to a bright future.
As for the short term, I have little choice but to yield to the medical experts who seem confident that they can fix this. I've been told that my condition is so rare that the Ottawa General has documented ten cases...in its history. So despite the uncharted nature of this problem, I will place my faith in the doctors hands. I'll place my faith in the goodwill of my family and friends. I'll place my faith in my own stubbornness and determination to get my way at all costs.
You are all precious to me in your own unique way and many of you to each other. Don't be afraid to share that with those you care about most. You never know what tomorrow may bring.
---
Unlike my previous posts, I don't have anything to add to this one. There's no moral or lesson beyond what's already been written here. I still read this and remember how I felt the day I was given the bad news. I still remember being surprised that I felt sorry for myself only for a few minutes before I decided to get on with living, fighting and winning. Acceptance is fundamental but once you come face to face with the monster you have little choice. After all, denial won't make it go away.
Tuesday, March 9, 2010
Anger Management
In as much as I would love to tell the world that we cancer survivors are a tough breed filled with determination and optimism I have to acknowledge that I would only be telling you a portion of the story in doing so. To survive this experience, you and those around you will need to summon every ounce of strength and courage available and even then, the effort will fall short on several occasions. What few people like to admit however, is how much anger you'll encounter. That avoidance stems from a misunderstanding of the nature of anger. It isn't a negative emotion. It is a fundamental recognition that something is wrong. Something unjust or unfair has occurred and it needs to be righted. But what do you do with it?
I channel my anger toward fixing my problems. It motivates me to aggressively seek out a better, fairer, more empathetic way of living. It reminds me that there are no problems in life, only undiscovered solutions.
As a journalist I frequently engage in the public spectacle of the great Canadian health care debate. It doesn't matter who you ask, everyone has an opinion and like religion or politics, health care should probably top the list of things not to discuss over the dinner table. But my profession requires me to ask questions, to explore angles and to polarize issues. As it turns out, my choice of vocation compliments my nature which is to be inquisitive and often outspoken. So let me now take you to my journal entry, just a couple of days before my surgery to remove what I still believed was a benign tumour in my jaw...
July 15th, 2009:
As I head into my surgery to have this silly mass of tissue removed I can't help but be angry and amused at the same time. I know this event has become quite the spectator sport on Facebook so I thought I'd milk one final ounce of pity from the experience and reflect on what's happened and what it all means to me.
First, I have to talk about my experience with our healthcare system because as a talk radio host that subject always makes for good argument fodder. To be blunt, the Canadian healthcare system falls well short of universal healthcare and those who think we must protect it at all costs to avoid a two-tier system are missing the point. We already have a multi-tier system but it's not working as effectively as it could because provinces and doctors still compete with each other for business. Procedures that miss wait-time targets in Ontario are easy to find in Quebec and vice versa however the practice of cross-border referral is strongly discouraged and in some cases doctors can be fined for doing so. So there's a wealth of MRI's in Montreal but a complete lack of joint replacement capacity and the reverse is true in Ontario. Just one example.
In my case, diagnosing my ailment required a CT, an MRI and a biopsy. Each exam required a three-week wait and had I not diligently phoned the hospital and clinics in question on a daily basis it would have taken far longer because I was "forgotten" on several occasions. Once I was able to make an appointment I was rarely seen on time and in most cases waited at least two hours which calls into question the purpose of making an appointment. After the tests had been completed, I was able to consult with my doctor and it was very clear on each occasion that the clock was running. In no way did I feel that I ever had a chance to fully digest all the information I was given or to ask all the questions flooding my head. I'm still unclear on some of the procedural issues of my surgery and have resorted to finding my own answers on the internet. I don't feel as though I'm well-informed about how my recovery will proceed once the operation is done. My confidence in the system would be significantly stronger if only my doctor could spare an additional 10 to 15 minutes. But I don't place the blame on his shoulders because there were dozens of other people just like me waiting for their appointment and he needed to see them as well.
The fault lies in the system. We don't have enough doctors and nurses, we all know that. But now the provincial government has made things worse by implementing wait-time standards. Counter-intuitive as that may sound, hospital staff are now functioning on quota. Quantity has replaced what shred of quality our over-taxed system still had and details are going overlooked. Important details. Life-altering details. And the patient has little or no recourse.
So I'm angry. I'm angry that to begin with, I have just about the most pointless illness possible. A benign mass growing in my face that will ultimately kill me for no good reason. There's no nobility or honour in that. It's not comparable to the situation a firefighter faces upon suffering an injury sustained while saving someone's life. I can't identify with a soldier who was injured while protecting the freedom of others. It's just a big stupid lump in a terrible place forcing me to make a spectacle of myself. But worse than that, I'm angry because the system which is meant to be a cornerstone of Canadian culture has reduced me to a nameless statistic. That which we claim to cherish so deeply has been broken for such a long time and we're all in denial. I have no doubt that I'll get responses to this note defending our system and all its merits because that's how entrenched the model has become in our national identity. Travel the world and look at how other countries are mixing public and private health care and how it hasn't resulted in two levels of care, but rather two systems that compliment each other. The current Canadian healthcare system coddles hypochondriacs and punishes those with valid illnesses. It sets unrealistic targets for doctors and nurses forcing them to compromise their standards so politicians can score points with style-over-substance wait-time registries. It wastes billions of dollars maintaining a model which stopped working years ago because the people of this country are too stubborn and ignorant to realise there's a better way.
--
That's where my head was a few days before my surgery. To say I had some anger issues would certainly qualify as an understatement. To summarily disqualify those issues because they were raised in anger would be unfair. When I read this blog post today, it makes me realise how much I still had to learn about our health care system and how well it does work. I also realise that there are legitimate problems, some of which I identified, and we should continue a dialogue with all involved to improve our system because at some point it will touch all of us. Mostly it made me realise that I have not only an opportunity, but rather an obligation to use my position to raise these issues, to maintain the debate, to give a voice to the voiceless because complacency and ignorance is the real enemy.
The experience taught me to be my own advocate and to demand that my questions be answered. It also taught me to thank the wonderful people who work in the system who truly care about their patients and give their very best each and every day to help us through some of the most challenging periods we've faced.
The experience taught me to use my anger to learn, to grow and to think beyond my own perspective. It made me stronger. Your anger can do the same.
I channel my anger toward fixing my problems. It motivates me to aggressively seek out a better, fairer, more empathetic way of living. It reminds me that there are no problems in life, only undiscovered solutions.
As a journalist I frequently engage in the public spectacle of the great Canadian health care debate. It doesn't matter who you ask, everyone has an opinion and like religion or politics, health care should probably top the list of things not to discuss over the dinner table. But my profession requires me to ask questions, to explore angles and to polarize issues. As it turns out, my choice of vocation compliments my nature which is to be inquisitive and often outspoken. So let me now take you to my journal entry, just a couple of days before my surgery to remove what I still believed was a benign tumour in my jaw...
July 15th, 2009:
As I head into my surgery to have this silly mass of tissue removed I can't help but be angry and amused at the same time. I know this event has become quite the spectator sport on Facebook so I thought I'd milk one final ounce of pity from the experience and reflect on what's happened and what it all means to me.
First, I have to talk about my experience with our healthcare system because as a talk radio host that subject always makes for good argument fodder. To be blunt, the Canadian healthcare system falls well short of universal healthcare and those who think we must protect it at all costs to avoid a two-tier system are missing the point. We already have a multi-tier system but it's not working as effectively as it could because provinces and doctors still compete with each other for business. Procedures that miss wait-time targets in Ontario are easy to find in Quebec and vice versa however the practice of cross-border referral is strongly discouraged and in some cases doctors can be fined for doing so. So there's a wealth of MRI's in Montreal but a complete lack of joint replacement capacity and the reverse is true in Ontario. Just one example.
In my case, diagnosing my ailment required a CT, an MRI and a biopsy. Each exam required a three-week wait and had I not diligently phoned the hospital and clinics in question on a daily basis it would have taken far longer because I was "forgotten" on several occasions. Once I was able to make an appointment I was rarely seen on time and in most cases waited at least two hours which calls into question the purpose of making an appointment. After the tests had been completed, I was able to consult with my doctor and it was very clear on each occasion that the clock was running. In no way did I feel that I ever had a chance to fully digest all the information I was given or to ask all the questions flooding my head. I'm still unclear on some of the procedural issues of my surgery and have resorted to finding my own answers on the internet. I don't feel as though I'm well-informed about how my recovery will proceed once the operation is done. My confidence in the system would be significantly stronger if only my doctor could spare an additional 10 to 15 minutes. But I don't place the blame on his shoulders because there were dozens of other people just like me waiting for their appointment and he needed to see them as well.
The fault lies in the system. We don't have enough doctors and nurses, we all know that. But now the provincial government has made things worse by implementing wait-time standards. Counter-intuitive as that may sound, hospital staff are now functioning on quota. Quantity has replaced what shred of quality our over-taxed system still had and details are going overlooked. Important details. Life-altering details. And the patient has little or no recourse.
So I'm angry. I'm angry that to begin with, I have just about the most pointless illness possible. A benign mass growing in my face that will ultimately kill me for no good reason. There's no nobility or honour in that. It's not comparable to the situation a firefighter faces upon suffering an injury sustained while saving someone's life. I can't identify with a soldier who was injured while protecting the freedom of others. It's just a big stupid lump in a terrible place forcing me to make a spectacle of myself. But worse than that, I'm angry because the system which is meant to be a cornerstone of Canadian culture has reduced me to a nameless statistic. That which we claim to cherish so deeply has been broken for such a long time and we're all in denial. I have no doubt that I'll get responses to this note defending our system and all its merits because that's how entrenched the model has become in our national identity. Travel the world and look at how other countries are mixing public and private health care and how it hasn't resulted in two levels of care, but rather two systems that compliment each other. The current Canadian healthcare system coddles hypochondriacs and punishes those with valid illnesses. It sets unrealistic targets for doctors and nurses forcing them to compromise their standards so politicians can score points with style-over-substance wait-time registries. It wastes billions of dollars maintaining a model which stopped working years ago because the people of this country are too stubborn and ignorant to realise there's a better way.
--
That's where my head was a few days before my surgery. To say I had some anger issues would certainly qualify as an understatement. To summarily disqualify those issues because they were raised in anger would be unfair. When I read this blog post today, it makes me realise how much I still had to learn about our health care system and how well it does work. I also realise that there are legitimate problems, some of which I identified, and we should continue a dialogue with all involved to improve our system because at some point it will touch all of us. Mostly it made me realise that I have not only an opportunity, but rather an obligation to use my position to raise these issues, to maintain the debate, to give a voice to the voiceless because complacency and ignorance is the real enemy.
The experience taught me to be my own advocate and to demand that my questions be answered. It also taught me to thank the wonderful people who work in the system who truly care about their patients and give their very best each and every day to help us through some of the most challenging periods we've faced.
The experience taught me to use my anger to learn, to grow and to think beyond my own perspective. It made me stronger. Your anger can do the same.
Monday, March 8, 2010
Writing has always been the easiest avenue forward.
Hi there, my name is Greg and I'll be your guest blogger this week. I don't know much about the blogosphere it's rule or the expectations of those who read these types of things. I'm not sure which writing format best fits the social media space. Given it's ability to reach a wide array of readers I could presume that a formal writing style might be best. But social media also lends itself to revealing of very personal information from time to time which might suggest that a more casual style is best. I work in the communications realm and yet I find myself at a loss when it comes to expressing my most personal feelings. So bear with me if you please and I'll try to share some of my humble experience with you. And the first thing I want to share is how cathartic it is to express your feelings as much as possible and whenever possible. It's bad enough to discover that something foreign is growing inside you and that the treatment is the use of toxic chemicals, damaging radiation and difficult surgery but to deny yourself the purging of emotional stress is downright fatal.
For me, writing was always the easiest avenue forward. I dislike confrontation and emotional outbursts and I've always found it much simpler to collect my thoughts in private and hammer away on my keyboard. Write, organize, rearrange, spell check, write some more. Damnit, that wasn't a proper sentence, my English teachers will be so disappointed.
My writing is at once an outlet for my sense of humour and some of the darkest emotions I've encountered in my 35 years on this planet. It allows me to say in confidence that which wouldn't pass my lips under normal circumstances. So for my first blog entry, I'm going to share samples of what I wrote as I was being diagnosed with what I now know was a synovial cell sarcoma growth in my jaw.
Friday, May 22, 2009 "Many of you have no doubt noticed that I haven't been to work this week. Those of you who I don't see as often probably have no idea that anything is out of the ordinary with me. So I thought I would embrace the great powers of Facebook to tell you all my story in one shot. Once you read the details below, you'll understand why I'm trying to avoid repeating the story three or four dozen times.
I've been diagnosed with a tumour about the size of an apple in my head just behind the right corner of my jaw. Now before you go shopping for condolence cards at Hallmark, know that it appears to be benign. Just a big annoying lump of tissue which has grown uncontrollably for no apparent reason. The doctors tell me this is actually quite common and quite treatable, but it's going to require some pretty radical surgery.
I won't get into too much (gory) detail here, but the procedure is going to require a fairly major incision down the middle of my chin and around the jaw. They'll cut the jaw bone in half, peel back half my face and then remove the stupid tumour. That's the gross part. The procedure is going to cause a lot of swelling, not to mention it'll be impossible to eat, breathe or swallow normally for a while, so I'll be in the hospital for a couple of weeks after the surgery with a breathing tube in my neck and a feeding tube in my stomach. That's the unpleasant part.
Afterwards I'll be home recovering, trying to get strength and normal mobility restored in my face and jaw so I can eat and speak again. There is a big nerve which controls facial function right in the middle of this whole mess, so there is a possibility that I will never regain control of the right side of my face and that will be the end of my career in radio. That's the worst case scenario.
If all goes according to plan, I'll be back to normal a few weeks after the surgery and by the fall it'll be as though none of this ever happened (save for a small scar under my chin). That's what I'm planning on.
I'm writing this publicly because I'm not a big fan of secrets and I don't want any of my friends to worry about me or for there to be any confusion about what's really going on. I would want to know what was happening with any of my friends if our positions were reversed. But I don't want any big ordeal surrounding this. I'm no different today than I was yesterday and I don't want anyone to feel obligated to do or say anything they wouldn't normally do or say. It is what it is and I'll get though it in no time.
So there it is. Big lump requires big surgery and carries potentially big consequences but I feel fine and I'm totally confident that I'll be back to my normal self in no time. If you still feel the need to react to this news in some measurable way I am accepting cash donations which will undoubtedly help to determine who my favourite friends are after this is over.
That was what I was thinking before I knew I had cancer. My thoughts were focused on easing the concerns of family and friends and imparting a sense of courage and bravery on my loved ones and myself. Mostly it felt good to get the words out in one motion, knowing that word would spread and that I could avoid the unenviable process of explaining my situation over and over. I highly recommend this method of writing and sharing on the social media realm.
After this came one of the most difficult challenges I have ever faced. Tune in tomorrow...
For me, writing was always the easiest avenue forward. I dislike confrontation and emotional outbursts and I've always found it much simpler to collect my thoughts in private and hammer away on my keyboard. Write, organize, rearrange, spell check, write some more. Damnit, that wasn't a proper sentence, my English teachers will be so disappointed.
My writing is at once an outlet for my sense of humour and some of the darkest emotions I've encountered in my 35 years on this planet. It allows me to say in confidence that which wouldn't pass my lips under normal circumstances. So for my first blog entry, I'm going to share samples of what I wrote as I was being diagnosed with what I now know was a synovial cell sarcoma growth in my jaw.
Friday, May 22, 2009 "Many of you have no doubt noticed that I haven't been to work this week. Those of you who I don't see as often probably have no idea that anything is out of the ordinary with me. So I thought I would embrace the great powers of Facebook to tell you all my story in one shot. Once you read the details below, you'll understand why I'm trying to avoid repeating the story three or four dozen times.
I've been diagnosed with a tumour about the size of an apple in my head just behind the right corner of my jaw. Now before you go shopping for condolence cards at Hallmark, know that it appears to be benign. Just a big annoying lump of tissue which has grown uncontrollably for no apparent reason. The doctors tell me this is actually quite common and quite treatable, but it's going to require some pretty radical surgery.
I won't get into too much (gory) detail here, but the procedure is going to require a fairly major incision down the middle of my chin and around the jaw. They'll cut the jaw bone in half, peel back half my face and then remove the stupid tumour. That's the gross part. The procedure is going to cause a lot of swelling, not to mention it'll be impossible to eat, breathe or swallow normally for a while, so I'll be in the hospital for a couple of weeks after the surgery with a breathing tube in my neck and a feeding tube in my stomach. That's the unpleasant part.
Afterwards I'll be home recovering, trying to get strength and normal mobility restored in my face and jaw so I can eat and speak again. There is a big nerve which controls facial function right in the middle of this whole mess, so there is a possibility that I will never regain control of the right side of my face and that will be the end of my career in radio. That's the worst case scenario.
If all goes according to plan, I'll be back to normal a few weeks after the surgery and by the fall it'll be as though none of this ever happened (save for a small scar under my chin). That's what I'm planning on.
I'm writing this publicly because I'm not a big fan of secrets and I don't want any of my friends to worry about me or for there to be any confusion about what's really going on. I would want to know what was happening with any of my friends if our positions were reversed. But I don't want any big ordeal surrounding this. I'm no different today than I was yesterday and I don't want anyone to feel obligated to do or say anything they wouldn't normally do or say. It is what it is and I'll get though it in no time.
So there it is. Big lump requires big surgery and carries potentially big consequences but I feel fine and I'm totally confident that I'll be back to my normal self in no time. If you still feel the need to react to this news in some measurable way I am accepting cash donations which will undoubtedly help to determine who my favourite friends are after this is over.
That was what I was thinking before I knew I had cancer. My thoughts were focused on easing the concerns of family and friends and imparting a sense of courage and bravery on my loved ones and myself. Mostly it felt good to get the words out in one motion, knowing that word would spread and that I could avoid the unenviable process of explaining my situation over and over. I highly recommend this method of writing and sharing on the social media realm.
After this came one of the most difficult challenges I have ever faced. Tune in tomorrow...
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