Since the outset of this blog, I always promised myself that I would write the truth, I would let everyone reading this blog feel my very real emotion, they would walk this journey with me, and they would feel my fight. I have not and will not hold back my emotions in order to make this a less turbulent read. Those emotions that I feel are the real, raw, unhindered emotions that I face every single second of every single day, and it would be a gross injustice to lie to you, but even more to to lie to myself.
The most beautiful yet at the same time hindering lesson I have learnt so far is that to procrastinate is to put off the inevitable, and when we are all fighting a battle against our primordial clock, it seems pretty illogical. When you accept that there are certain things you can and cannot control, you get a greater perspective on life.
I have learnt to accept some pretty massive life lessons in a very short amount of time. We all meander along in life, some more driven to obtain something, a desire planted in the back odour mind. Even if we are not sure of what it is, how we hope to achieve it, or the means of obtaining it, it may be an objective, we may not be sure what that objective is, but some day we hope to have a moment of where the toils and struggles amount to something. It is then that our lives hope to make sense, where everything and everyone we have met in life serves to meet this objective, and we then know our purpose.
As I lay, with my bottom on the freezing theatre table, surrounded by equipment that far exceeds my mental capacity, I asked myself, "Brad, if you don't wake up from this, what can you account for in your life... ". That's a pretty big question for a 24 year old to answer. What I am referring to is not material, it is not something that can be obtained through material wealth, I have now learnt that that is very insignificant. I am referring to those moments we look for in life that we will remember for the rest of our lives, the moments where we witness majesty, or something majestic. Have you seen everything you want to see, in order to account for a life well spent. As my friend Stuart Kidgell puts it, "the medical sword is hanging over all our heads", I just have to acknowledge my enemy sooner than hoped.
We all get stuck in moments of limbo, the moments when we wander between a place we may be comfortable with, to a place we hope to be going. Of course it is easy to get settled into a routine, see the same scene every day and go through the same motions, but we witness the great things in life when routine is broken, and all too often people are afraid of breaking routine. We like routine. All of that gets completely blitzed when you have to do the same thing when you are knowingly sleeping on an active time bomb.
I do not mean that in a negative way, because I maintain my positivity throughout, this tumour is still in my head, and I am still determined to fight, and win. I have my next batch of scans and tests in April, and I can live inside a padded room for the next month and a half, or I can see the people that mean the most to me, do the things I cherish above all others, and hopefully laugh continuously for the next 2 months. We are all guilty of forgetting about how valuable life is, we procrastinate and in so doing we lose out on the things we should be doing.
I am also guilty of procrastination over the last week or so,I have been so involved with this whole thing, that I forgot to take stock of the battle that has been fought, and the people who have fought it with me. My family, girlfriend and friends have been through this entire battle with me. They have pulled me out of the darkness, and at times it felt like I was crawling out of a hole dug in the sand. The walls felt as if they were caving in, my own drive and determination to get out of the pit was making the walls crumble faster.
I have not been sleeping well, I spend most of the night trying to find any subject that will drive my mind far away from the current reality. In the end, I find solace in my own thoughts, and at least I still have the mental power to think.
I have been up and down, and that is the road you ride when you fight this foe, you learn to accept that time is a precious commodity, and the price we pay for it is so so high, because if you sit on your laurels trying to fight time, you miss out on life. I go to sleep every night knowing that I will ply all of my mental strength into pushing this thing out of my mind, both physically and mentally. Perhaps it is just wishful thinking, and positive interpretation, but those 3 operations, and countless hours spent with doctors, nurses and specialists could have gone down another route entirely.
It's only looking back do I realise how close everything came, when I read the reports on my surgery do I shudder, as I imagine those doctors huddled over a 24 year olds motionless body, but not dead, inside that body there is all the fight left in the world. If you lose your will to fight, the battle is already lost.
After surgery I, at times, have felt different. I, in essence, am the same Brad, yet I interpret thing differently. I procrastinate less, and live more. We are so afraid to lose out in case another option opens up, a more favourable option. I go to bed tonight knowing that if I had procrastinated with that first MRI, I wouldn't be here today. I am now living everyday, and I am so incredibly grateful for every second.
Wednesday 29 February 2012
Monday 20 February 2012
Gravity
The first major rule that we all learn about gravity, is that what goes up, must come down. With that in mind, I am now not exactly sure how to write this blog, for the first time in a while I feel apprehension in starting because of fear that I may jinx the incredible news I received this last week, I may be brought back down to earth and I may have to face some pretty big questions. I have written this particular blog in my head so many times, So much so that it now seems lacking in depth and not paying the necessary respect for the people following this blog. I know I have kept a very low profile this last week, and that lies mostly in part to this whole week feeling surreal.
When you get good news, you get propelled out of this atmosphere into a place of euphoria, that up until a week ago, I had completely forgotten about. When you are fighting against something so consuming as a tumor in your brain, you tend to forget about the simple things in life that afford you great pleasures. Euphoria is something that cannot be bought, it cannot be felt, it is an intangible object that makes the possessor the richest person on earth, because to them euphoria is a happiness that cannot be matched. It is the moment when any material wealth is humbled by pure emotion. The euphoria I am speaking of has been my fuel for the last week.
Firstly, I have been in a limbo for the last two months, as we all know I have had this tumor in my head that has driven myself, and my loved ones all over the world in search of treatment. And we found that treatment in Stanford, California, and in London. We have been through an incredible amount of up and down moments, and that is the gravity I speak of. When I refer to "We", I consider that to include myself, my parents, my family, my loved ones, my friends and anyone who has found some form of happiness in reading my story. What I have witnessed over the last two months has shown me peoples capacity to care and to love. I have said this so many times before, but every time I feel alone, I refer back to the incredible support I have received and the stories people have shared with me, and it reminds me every time that I have never been alone. I have walked this road with thousands of people behind me, and it shows me that in times of adversity and hardship, we will never walk alone.
I have stumbled in the dark, as we all do, in search of answers. I have been up and down, and thrown left and right. And for every time I was down I would tell myself that I had to get back up, not because I couldnt get up, but purely because in my mind I would not stay down, that gravitational pull would not rule my life and I would not let gravity have its way with me. Of course when you are fighting the natural order of things, such as the body producing rogue cells that then go cancerous, those little cells fight back and hit your body as hard as they can in a bid to calm the battle and win a war that was never theirs. But in any war, there can only be one outcome for the man who sets out to fight until the war is over, his body is spent and his will to get home surpasses that of his foe, his desire to win outweighs that of the opponent, and his mental strength secures victory before the battle is fought.
I have viewed these last two months as a war, with small battles fought along the way that accumulated in to a war that has spanned 3 continents, 3 brain surgeries, 3 scars, and 2 really really bad haircuts.
Besides the physical scars that I will carry for the rest of my life, I will carry the emotional support I have been shown. My opinions of people has completely transformed, I have been shown their true grit and emotional depth, and for that I am grateful I have undergone this experience. I have felt peoples stories, and they have rocked the very core of my understanding of people, and what they have gone through. My story is one of millions, and so long as I help other people in a similar situation feel like they are not alone then I consider every second spent on this blog to be well spent.
Last week I met with Professor Brada, you can Google him, and his credentials, if I wrote them, would require for me to be up much later than planned. My father and I were to meet with Professore Brada on 14th of February, my mother opted to stay at home as it was my sisters Birthday. My father and I arrived at the LOC (London Oncology Clinic) at 17:30 on Tuesday afternoon. The LOC (Harley Street Clinic) is not like any hospital I have been to. It was more like a hotel than a hospital, as it had a grand reception area, and comfy deep couches. You are only reminded that it is a hospital when they take you off to a side room for tests.
We were scheduled to meet with professor Brada at 17:45, so in the 15 minute gap we waited patiently in the waiting room. It is a funny thing where the mind wanders off to in times of boredom or imptaience, and the thoughts you come up with when you are waiting in these rooms. My mind began to race again, and I start to hatch ideas that at the time seem very plausible and realistic but in hindsight are complete madness. I began to wonder about the probability of the tumor growing back in the short time between the US and UK, and other thoughts similar to this. Those are the little demons I spoke of last week.
17:45 comes, and as in the US, they work like clockwork. We arrive at Dr. Bradas consultation rooms, and instantly my pulse quickens and my heart-rate flutters. The jitters yet again begin to cloud my steady concentration thought. One knock and we are summonsed. Professor Brada is a very kind looking man, with a European accent that I have not quite tied down yet, but his voice is very calming and he already knows us by name, " Derek, Bradley, please, take a seat". We sit down in comfy arm chairs opposite his desk, and I steal a glance at a window that was reflecting his computer screens. He has pulled my MRI's onto his computer and I can see my brain again, for the second time I start to feel very light headed. I tell myself I knew this was coming and I brace myself for his recommendations about my course of either radiation or chemo-therapy. Prior to this meeting we were informed that I would probably undergo a 36 week course of chemo or a 7-8 week course of radiation. I brace myself for the oncoming news as one would brace for blunt force trauma. I am mentally ready for anything they can throw at me.... or so I thought I was.
The next 20 minutes were the most euphoric moments of my life.
He started the conversation by saying, "2 things... 1, you are not going to die of a brain tumor. 2, you are going to live a completely normal life, and the longevity of your life will not in any way be affected by the brain tumor..."
Hold on, I was there to see Professor Brada, a radiation oncologist, about my radiation course. Now this man is telling me that this tumor in my head is no longer going to rule my life.
What had happened in the next few minutes was a barrage of medical terminologies, reference to my MRI on his computer screen, some questions about my headaches, and how long they have spanned for, some more questions about how I first learned about my tumor, and some information he had extracted from the reports from Professor Harsh.
He could not have been more complimentary of Professor Harsh, and what an incredible job he had down in extracting 70% of the tumor. He paid respect to the man, as he could see that the tumor had developed fronds or barbs that had latched onto the wall of my 3rd ventricle, and that if he had tried to extract the remainder of the tumor, as most people would have attempted, that the repercussions would have been severe, to mention a few things I could have woken up with double vision or blindness, paralysis on my whole left hand side as I experienced in surgery, and doing severe damage to my brain itself. So I am very grateful that they maintained composure and pulled out when they did.
Professor Brada then went on to explain that the proliferation rated of my tumor are so low, that once we left Stanford, the pathology teams then analyzed, and reanalyzed my tumor samples over and over again. The results were that it was a very low Grade 2 Pineal Cytoma, and that it is such a low Grade 2 that it can be considered a Grade 1, the Grading system is relatively new and there is much differing opinions about what constitutes Grade 1, 2, 3, and 4. Dr. Brada then look my dad and I in the eye, and told us that the damage caused by radiation would be greater than the damage caused by the tumor itself and that the tumor has been in my head for a very very long time, longer than the 2-3 years as previously thought.
He then continued to tell us that I would head back to London in March/April for more scans and tests, but until then I can leave and continue my life as I normally would. He told me I was free to go and enjoy life.
My opinion of gravity has changed since that very moment, gravity is the force that will ground you should you let it, it is the magnet for negativity and defeat. I walked out of Dr. Brada's rooms with a blank expression, I did not know exactly what the man was telling me, and my father could not believe it either. We both floated out of his rooms, through the hospital reception area and into a taxi. We had not fully grasped what we had been told, and it took several days, and it is still taking some comprehension. We both sat in the taxi, with neither of us speaking until 10 minutes into the ride I asked him what this meant. I still dont think he had the words to explain to me exactly what Prof Brada was saying, and I don't blame him. He kind of muttered "Its over, Boy, and I am so so proud of you". We both just hugged each other as we realized what had been said and what my family and I have been through. The words were like a sword shattering my shackles to the ground, they released me from the torment of gravity and allowed me to reset my focus and attention to the things that really matter in life. I instantly get on the phone to my family and tell them the incredible news, no one can really comprehend or believe it. We are all still in a state of shock. My focus pre-cancer to what it is now is completely different, the things I held in esteem then are now of little concern to me. The gravity that held me down during this whole fight was a mental battle that can only be won when you are prepared to lose everything in the process of gaining a second chance at life
Prior to the meeting on late Tuesday afternoon, I was ready for the radiation, I was ready for the 7 weeks of hospitals, tests, scans and more MRI's. It shows how one hour of life after 2 months of fighting can change your life.
I have realized you set your own limits, you determine your gravity, and rather than letting things keep you down, you identify the things that will propel you to heights you had never imagined before.
How do you thank someone for saving your life... you show them how to live.
When you get good news, you get propelled out of this atmosphere into a place of euphoria, that up until a week ago, I had completely forgotten about. When you are fighting against something so consuming as a tumor in your brain, you tend to forget about the simple things in life that afford you great pleasures. Euphoria is something that cannot be bought, it cannot be felt, it is an intangible object that makes the possessor the richest person on earth, because to them euphoria is a happiness that cannot be matched. It is the moment when any material wealth is humbled by pure emotion. The euphoria I am speaking of has been my fuel for the last week.
Firstly, I have been in a limbo for the last two months, as we all know I have had this tumor in my head that has driven myself, and my loved ones all over the world in search of treatment. And we found that treatment in Stanford, California, and in London. We have been through an incredible amount of up and down moments, and that is the gravity I speak of. When I refer to "We", I consider that to include myself, my parents, my family, my loved ones, my friends and anyone who has found some form of happiness in reading my story. What I have witnessed over the last two months has shown me peoples capacity to care and to love. I have said this so many times before, but every time I feel alone, I refer back to the incredible support I have received and the stories people have shared with me, and it reminds me every time that I have never been alone. I have walked this road with thousands of people behind me, and it shows me that in times of adversity and hardship, we will never walk alone.
I have stumbled in the dark, as we all do, in search of answers. I have been up and down, and thrown left and right. And for every time I was down I would tell myself that I had to get back up, not because I couldnt get up, but purely because in my mind I would not stay down, that gravitational pull would not rule my life and I would not let gravity have its way with me. Of course when you are fighting the natural order of things, such as the body producing rogue cells that then go cancerous, those little cells fight back and hit your body as hard as they can in a bid to calm the battle and win a war that was never theirs. But in any war, there can only be one outcome for the man who sets out to fight until the war is over, his body is spent and his will to get home surpasses that of his foe, his desire to win outweighs that of the opponent, and his mental strength secures victory before the battle is fought.
I have viewed these last two months as a war, with small battles fought along the way that accumulated in to a war that has spanned 3 continents, 3 brain surgeries, 3 scars, and 2 really really bad haircuts.
Besides the physical scars that I will carry for the rest of my life, I will carry the emotional support I have been shown. My opinions of people has completely transformed, I have been shown their true grit and emotional depth, and for that I am grateful I have undergone this experience. I have felt peoples stories, and they have rocked the very core of my understanding of people, and what they have gone through. My story is one of millions, and so long as I help other people in a similar situation feel like they are not alone then I consider every second spent on this blog to be well spent.
Last week I met with Professor Brada, you can Google him, and his credentials, if I wrote them, would require for me to be up much later than planned. My father and I were to meet with Professore Brada on 14th of February, my mother opted to stay at home as it was my sisters Birthday. My father and I arrived at the LOC (London Oncology Clinic) at 17:30 on Tuesday afternoon. The LOC (Harley Street Clinic) is not like any hospital I have been to. It was more like a hotel than a hospital, as it had a grand reception area, and comfy deep couches. You are only reminded that it is a hospital when they take you off to a side room for tests.
We were scheduled to meet with professor Brada at 17:45, so in the 15 minute gap we waited patiently in the waiting room. It is a funny thing where the mind wanders off to in times of boredom or imptaience, and the thoughts you come up with when you are waiting in these rooms. My mind began to race again, and I start to hatch ideas that at the time seem very plausible and realistic but in hindsight are complete madness. I began to wonder about the probability of the tumor growing back in the short time between the US and UK, and other thoughts similar to this. Those are the little demons I spoke of last week.
17:45 comes, and as in the US, they work like clockwork. We arrive at Dr. Bradas consultation rooms, and instantly my pulse quickens and my heart-rate flutters. The jitters yet again begin to cloud my steady concentration thought. One knock and we are summonsed. Professor Brada is a very kind looking man, with a European accent that I have not quite tied down yet, but his voice is very calming and he already knows us by name, " Derek, Bradley, please, take a seat". We sit down in comfy arm chairs opposite his desk, and I steal a glance at a window that was reflecting his computer screens. He has pulled my MRI's onto his computer and I can see my brain again, for the second time I start to feel very light headed. I tell myself I knew this was coming and I brace myself for his recommendations about my course of either radiation or chemo-therapy. Prior to this meeting we were informed that I would probably undergo a 36 week course of chemo or a 7-8 week course of radiation. I brace myself for the oncoming news as one would brace for blunt force trauma. I am mentally ready for anything they can throw at me.... or so I thought I was.
The next 20 minutes were the most euphoric moments of my life.
He started the conversation by saying, "2 things... 1, you are not going to die of a brain tumor. 2, you are going to live a completely normal life, and the longevity of your life will not in any way be affected by the brain tumor..."
Hold on, I was there to see Professor Brada, a radiation oncologist, about my radiation course. Now this man is telling me that this tumor in my head is no longer going to rule my life.
What had happened in the next few minutes was a barrage of medical terminologies, reference to my MRI on his computer screen, some questions about my headaches, and how long they have spanned for, some more questions about how I first learned about my tumor, and some information he had extracted from the reports from Professor Harsh.
He could not have been more complimentary of Professor Harsh, and what an incredible job he had down in extracting 70% of the tumor. He paid respect to the man, as he could see that the tumor had developed fronds or barbs that had latched onto the wall of my 3rd ventricle, and that if he had tried to extract the remainder of the tumor, as most people would have attempted, that the repercussions would have been severe, to mention a few things I could have woken up with double vision or blindness, paralysis on my whole left hand side as I experienced in surgery, and doing severe damage to my brain itself. So I am very grateful that they maintained composure and pulled out when they did.
Professor Brada then went on to explain that the proliferation rated of my tumor are so low, that once we left Stanford, the pathology teams then analyzed, and reanalyzed my tumor samples over and over again. The results were that it was a very low Grade 2 Pineal Cytoma, and that it is such a low Grade 2 that it can be considered a Grade 1, the Grading system is relatively new and there is much differing opinions about what constitutes Grade 1, 2, 3, and 4. Dr. Brada then look my dad and I in the eye, and told us that the damage caused by radiation would be greater than the damage caused by the tumor itself and that the tumor has been in my head for a very very long time, longer than the 2-3 years as previously thought.
He then continued to tell us that I would head back to London in March/April for more scans and tests, but until then I can leave and continue my life as I normally would. He told me I was free to go and enjoy life.
My opinion of gravity has changed since that very moment, gravity is the force that will ground you should you let it, it is the magnet for negativity and defeat. I walked out of Dr. Brada's rooms with a blank expression, I did not know exactly what the man was telling me, and my father could not believe it either. We both floated out of his rooms, through the hospital reception area and into a taxi. We had not fully grasped what we had been told, and it took several days, and it is still taking some comprehension. We both sat in the taxi, with neither of us speaking until 10 minutes into the ride I asked him what this meant. I still dont think he had the words to explain to me exactly what Prof Brada was saying, and I don't blame him. He kind of muttered "Its over, Boy, and I am so so proud of you". We both just hugged each other as we realized what had been said and what my family and I have been through. The words were like a sword shattering my shackles to the ground, they released me from the torment of gravity and allowed me to reset my focus and attention to the things that really matter in life. I instantly get on the phone to my family and tell them the incredible news, no one can really comprehend or believe it. We are all still in a state of shock. My focus pre-cancer to what it is now is completely different, the things I held in esteem then are now of little concern to me. The gravity that held me down during this whole fight was a mental battle that can only be won when you are prepared to lose everything in the process of gaining a second chance at life
Prior to the meeting on late Tuesday afternoon, I was ready for the radiation, I was ready for the 7 weeks of hospitals, tests, scans and more MRI's. It shows how one hour of life after 2 months of fighting can change your life.
I have realized you set your own limits, you determine your gravity, and rather than letting things keep you down, you identify the things that will propel you to heights you had never imagined before.
How do you thank someone for saving your life... you show them how to live.
Monday 13 February 2012
Demons
Demons, these are the little thoughts that haunt you, they are the thoughts that drift into your mind during moments of inactivity and somehow manage to plant a seed of thought that slowly spreads, just like a tumor, until it is all you can think about. These thoughts then tend to haunt you, until you either manage to wrestle the thought into submission or you drive yourself mad .The hard part about it is that the thought gets more and more invasive. It starts as a quick glimmer or figment of your imagination, and by the end it can be an all consuming mass that draws you in like a black hole. You hear from the doctors that these moments will happen and that these types of things are common, and that they throw statistics at you that are aimed at alleviating the madness that can quickly take you. The doctors also warn you that inevitably, no matter how strong you are, you will think about the dark, scary moments in which you question your existence and how long you'll be around for. My advice would be that no matter how dark and scary, as long as you're alive, you're fighting, and that the only statistic that matters is you and how much of a percentage of your mind is focused on beating this thing.
I used to think of demons as completely different things, they were the "scary" flashback I would have on a Sunday afternoon when looking back at my weekend, the demons would haunt my thoughts and I would cringe to think about my inane exploits. The demons I have been experiencing lately are a very different animal, and a lot more serious. For those of you reading this blog who have had some form of cancer, you will know about these demons... the ones that wake you up in the middle of the night, in a cold sweat, and once the idea has been processed, your mind begins to run, it breaks down the idea into every conceivable scenario and tries to apply it to your current status and situation. My "demons" in the beginning of this whole thing were very different from what they are now, I write that off to ignorance and not really understanding what the doctors were talking about.
I do recall that I had no idea what the difference between malignant and benign were, all I really cared about was whether this thing was going to kill me... because invariably that is all we really care about. Once that question gets answered we have a steering point or a buoy to hold on to. Once the doctor said, "if you leave it, you die", I had a pretty good steering point. I knew that I would be able to beat it so long as it came out, I was not phased with how I was going to get it out because that was not an option. The demons during that initial phase were perhaps likened to an uneducated child, brash and without direction. But slowly as I have plodded along my journey to recovery I have began to absorb information. I love information, and the incredible power it holds... my only wish would be that if I could absorb so much information that it would squash my tumor, alas. I was also very apprehensive about information, because I also know the allure of the internet and peoples need to run to it if there is something we are unsure of. I confess I have done this in the past, I was even given the name "Google" or "Funfact Woodley", as I would resort to the search engine if there was anything I was unsure of.
As soon as I learned about my tumor, my immediate reaction was to Google "Pineal tumor". That would have been unwise, and I suggest that none of the readers of this blog go against my wishes. It is not only because there is a lot of false information out there, but it is also harmful information, that can be misleading and will serve no purpose. Rather peak to someone who is an authority on the matter. I also believe it was wise to never research brain tumors and pineal tumors because I would then have been given information that I needed to hear from a professor of nuerosurgery, because Professor Harsh informed me that of all the brain tumors in the pineal region, I have one that accounts for between 1 and 4%. If I had read that on some website, or wikipedia, I surely would have crumbled like a house of cards, the armour that my parents speak of would have been dented before the battle had begun, and my mountain would have seemed to steep an angle to climb.
The Demons will always be in the back of my mind, tomorrow I have my first appointment with my Radiation Oncologists at Harley Street Clinic. I am apprehensive, I know that yet again they are going to be throwing all the hard facts at me, that I have a malignant cancer in the middle of my brain, and that they were successful in removing 70% of it, and that the remaining 30% has developed fronds, which means it has dug into the wall of my 3rd ventricle. Prof. Harsh tried to remove it during surgery but as they were trying to remove it, my motor function on my left hand side began to decrease, and for a few hours the doctors were unsure whether I would have full function on my left hand side. These are the risks we take, I would undergo that surgery again so long as it yielded the same results. Hindsight is scary, just as demons are, because I shudder to think what could have happened. I could never have woken up, and I wouldnt have known the difference.
Those minutes that I lay on the operating table before surgery were the most humbling of my life, and only a few people will be able to empathize with this, because only a few people have been in a situation where they readily accept death in order to be able to live, and get better. I will never be able to explain the pure and raw emotion I felt, I realized that those last few minutes could be my last and that I may never see my loved ones again. Now that its all over, the demons are the things that haunt me. I wake up at least once a night, and I lie there thinking about whether they got enough of the tumor out, and whether the doctors are going to throw another curve ball at me during the appointment tomorrow. I am slowly learning the incredible power of my mind, and the need to control my thoughts and emotions. I still have never cried about this cancer, not because it shows weakness, because it doesn't. I haven't cried because I am scared to release the emotion and fear that resides in me, and in apprehension of what else it will unlock.
The demons I am talking about have the power to make you recall the scariest moments of your fight, and they make you shudder to think of the devastating consequences of your actions or decisions. You realize what you could have lost in your attempt to gain more, they are the thoughts that stir your deepest and most personal realizations.
I am not a super hero, I feel pain and I scare just the same as the next. When you get hammered with reams of information we all look for a beacon that will help pull us out of the darkness, we all have our vices, and we all need the people around us. My support system has pulled me through this, people forget that I am not here alone, I have my family, loved ones and friends here that have been a source of inspiration and strength. Just as they have been a source so has everyone back home, and I will never forget the incredible love I have been shown. Thank you to everyone. We all forget the incredible strength and importance of those two words and how misconstrued they have become. From the bottom of my heart, Thank You to Everyone.
We all experience Demons, and we all have our own personal demons, with each one providing minutes or hours of panic, where they fester, like a sore until they become infected. I have experienced my fair share lately, and they seemed bigger than monoliths at certain stages of this fight. Then I realized that these thoughts are there to test you, they are designed to test the mental fortitude of your mind, and in a battle like mine, only the strongest mentally survive. If I continue to let these little thoughts gather momentum, in the end I will be surrounded by thoughts that harbor no positivity and emit negativity like the sun emits light. It will be all consuming, and with devastating repercussions.
So when you hear the voice of your demons tinkering around in the back of your mind, in the most important vessel of thought to yourself, you have to accept that these demons will play inconceivable games against you, it will use your fears, phobias and insecurities to try gain an advantage over you. The blow can be physically felt, your heart quickens, and your breath shortens. This panic is only developed as a consequence of your demons.
In the end, just remember that no combination of single thoughts is stronger than the collective power of the thoughts of your mind. I am still wrestling my demons, every day, but every small battle won, I get closer to winning this perpetual war that is fought in the realm of the mind.
I used to think of demons as completely different things, they were the "scary" flashback I would have on a Sunday afternoon when looking back at my weekend, the demons would haunt my thoughts and I would cringe to think about my inane exploits. The demons I have been experiencing lately are a very different animal, and a lot more serious. For those of you reading this blog who have had some form of cancer, you will know about these demons... the ones that wake you up in the middle of the night, in a cold sweat, and once the idea has been processed, your mind begins to run, it breaks down the idea into every conceivable scenario and tries to apply it to your current status and situation. My "demons" in the beginning of this whole thing were very different from what they are now, I write that off to ignorance and not really understanding what the doctors were talking about.
I do recall that I had no idea what the difference between malignant and benign were, all I really cared about was whether this thing was going to kill me... because invariably that is all we really care about. Once that question gets answered we have a steering point or a buoy to hold on to. Once the doctor said, "if you leave it, you die", I had a pretty good steering point. I knew that I would be able to beat it so long as it came out, I was not phased with how I was going to get it out because that was not an option. The demons during that initial phase were perhaps likened to an uneducated child, brash and without direction. But slowly as I have plodded along my journey to recovery I have began to absorb information. I love information, and the incredible power it holds... my only wish would be that if I could absorb so much information that it would squash my tumor, alas. I was also very apprehensive about information, because I also know the allure of the internet and peoples need to run to it if there is something we are unsure of. I confess I have done this in the past, I was even given the name "Google" or "Funfact Woodley", as I would resort to the search engine if there was anything I was unsure of.
As soon as I learned about my tumor, my immediate reaction was to Google "Pineal tumor". That would have been unwise, and I suggest that none of the readers of this blog go against my wishes. It is not only because there is a lot of false information out there, but it is also harmful information, that can be misleading and will serve no purpose. Rather peak to someone who is an authority on the matter. I also believe it was wise to never research brain tumors and pineal tumors because I would then have been given information that I needed to hear from a professor of nuerosurgery, because Professor Harsh informed me that of all the brain tumors in the pineal region, I have one that accounts for between 1 and 4%. If I had read that on some website, or wikipedia, I surely would have crumbled like a house of cards, the armour that my parents speak of would have been dented before the battle had begun, and my mountain would have seemed to steep an angle to climb.
The Demons will always be in the back of my mind, tomorrow I have my first appointment with my Radiation Oncologists at Harley Street Clinic. I am apprehensive, I know that yet again they are going to be throwing all the hard facts at me, that I have a malignant cancer in the middle of my brain, and that they were successful in removing 70% of it, and that the remaining 30% has developed fronds, which means it has dug into the wall of my 3rd ventricle. Prof. Harsh tried to remove it during surgery but as they were trying to remove it, my motor function on my left hand side began to decrease, and for a few hours the doctors were unsure whether I would have full function on my left hand side. These are the risks we take, I would undergo that surgery again so long as it yielded the same results. Hindsight is scary, just as demons are, because I shudder to think what could have happened. I could never have woken up, and I wouldnt have known the difference.
Those minutes that I lay on the operating table before surgery were the most humbling of my life, and only a few people will be able to empathize with this, because only a few people have been in a situation where they readily accept death in order to be able to live, and get better. I will never be able to explain the pure and raw emotion I felt, I realized that those last few minutes could be my last and that I may never see my loved ones again. Now that its all over, the demons are the things that haunt me. I wake up at least once a night, and I lie there thinking about whether they got enough of the tumor out, and whether the doctors are going to throw another curve ball at me during the appointment tomorrow. I am slowly learning the incredible power of my mind, and the need to control my thoughts and emotions. I still have never cried about this cancer, not because it shows weakness, because it doesn't. I haven't cried because I am scared to release the emotion and fear that resides in me, and in apprehension of what else it will unlock.
The demons I am talking about have the power to make you recall the scariest moments of your fight, and they make you shudder to think of the devastating consequences of your actions or decisions. You realize what you could have lost in your attempt to gain more, they are the thoughts that stir your deepest and most personal realizations.
I am not a super hero, I feel pain and I scare just the same as the next. When you get hammered with reams of information we all look for a beacon that will help pull us out of the darkness, we all have our vices, and we all need the people around us. My support system has pulled me through this, people forget that I am not here alone, I have my family, loved ones and friends here that have been a source of inspiration and strength. Just as they have been a source so has everyone back home, and I will never forget the incredible love I have been shown. Thank you to everyone. We all forget the incredible strength and importance of those two words and how misconstrued they have become. From the bottom of my heart, Thank You to Everyone.
We all experience Demons, and we all have our own personal demons, with each one providing minutes or hours of panic, where they fester, like a sore until they become infected. I have experienced my fair share lately, and they seemed bigger than monoliths at certain stages of this fight. Then I realized that these thoughts are there to test you, they are designed to test the mental fortitude of your mind, and in a battle like mine, only the strongest mentally survive. If I continue to let these little thoughts gather momentum, in the end I will be surrounded by thoughts that harbor no positivity and emit negativity like the sun emits light. It will be all consuming, and with devastating repercussions.
So when you hear the voice of your demons tinkering around in the back of your mind, in the most important vessel of thought to yourself, you have to accept that these demons will play inconceivable games against you, it will use your fears, phobias and insecurities to try gain an advantage over you. The blow can be physically felt, your heart quickens, and your breath shortens. This panic is only developed as a consequence of your demons.
In the end, just remember that no combination of single thoughts is stronger than the collective power of the thoughts of your mind. I am still wrestling my demons, every day, but every small battle won, I get closer to winning this perpetual war that is fought in the realm of the mind.
Monday 6 February 2012
Point me in the right direction... im in a wheelchair!
Greetings from London, it has been quite a chilly reception, but nevertheless it is good to be with family and friends. I cant believe that last time I was here I had a 2cm tumor embedded into my my brain, and as I sit here now, 70% of that tumor has been removed.... I knew I had lost some weight, even if it is a few grams. From where we left off in Palo Alto, we went and saw Dr Harsh last Friday where he looked at my scar and assessed my recovery. He was happy with the state of my headaches and gave me permission to head over to London, UK, for the rest of my treatment.
I went through some invaluable lessons while I was in the US, and some were more hard learned than the others. Last Tuesday I hit the proverbial wall, it was 4 days after brain surgery and I considered myself to be on the road to recovery... the headaches were becoming less and less painful and I was in high spirits. When you go through brain surgery, you learn to not take things for granted. I woke up on the Tuesday morning with a painful searing feeling behind my eye, I can only compare this to someone getting a red hot poker and trying to twist it through the back of your eye, and once that pain begins to register with your central nervous system, it is then followed by an excruciating headache. That is how my Tuesday started, and I was not in high spirits. I tried to brush the headache aside by watching some TV and having a skype session, which was not ideal as I forgot to pay attention to the nausea slowly gathering momentum form within. It was becoming increasingly hard for me to keep food down, and I had already had one occasion of late night wretching.
My parents registered that I was going to be unplayable as I was having difficulty putting some food in my tummy and my refusal to awake from my slumber. I had been warned that I would only truly feel the effects of surgery 3-4 days after surgery, but seeing that I was out of ICU in just one day, I felt I was ahead of the curve. In order to try keep the vicodin from eating my stomach wall, my parents and I forced some oatmeal down. This would be a rued decision later on in the day... you can foresee my demise. My headache gradually began to worsen along with my nausea, but I continued to fight the pain and turn down any nausea medication. Here is some advice if you ever find yourself on prescription medication, take your pills if that is what it says on the script... a neuro surgeon professor knows better than I do.
As I lay on my bed, I had to call out to my mother frantically, the oatmeal that was "lining" my tummy had failed and I began to vomit. I cannot explain the pain you go through when you are trying to hold back a vomit which exerts even further pressure on your brain that is already under duress. Eventually I just had to submit, the affects of surgery had won this short lived battle. My mom came rushing towards me with a shopping bag in hand, and it was an all too attractive offer. After 10 minutes of wretching, it was finally over and the frantic worrying on my parents part began. They flew around the hotel room looking for cellphone numbers and emergency lines, and quickly closing any current skype calls... I am sorry for those of you who had to see my stint of vomiting. 45 minutes later we found ourselves in the hospital... yet again. We quickly saw Dr Harsh, followed by a battery of bloodtests, some more scans and some neurological tests. By this time I am in a wheelchair and not feeling great. Fate is a funny thing, but I needed to be in that wheelchair in that hospital to learn my most important lesson. I sat with my head in my hands, to weak to move and too tired to speak. I slowly got wheeled around the hospital from station to station where they performed their necessary tests. I slowly begin to lose interest in where we are going and I become very disillusioned with where I am going, I am 24 years old, I am not supposed to be bound to a wheelchair, recovering from brain surgery from a tumor... that wasnt my calling... or was it?
As I got wheeled around the hospital I looked more and more like a cancer patient, the colour begins to drain from my face, and slowly my complexion becomes more similar to that of a sheet and less like a human. I slump further down in my wheelchair as the burden of the challenge begins to weight heavier on my shoulders and my parents attempts at luring me out of this state are becoming less and less promising. Slowly the gravity of my battle begins to be identifiable, and my climb to the top of this mountain seems sheer. Where did my life go wrong, that this had to happen? These were the questions I was asking myself, the questions I needed to ask in order to get some clarity and some perspective, because as I was being wheeled around I was being grouped with other people who were in wheelchairs, who also had shaved heads and a very pale skin complexion. What i failed to recognize then was that I was being sat next to the people who were terminally ill with cancer, and they were all talking amongst one another, finding out each others prognosis. They saw me get wheeled into their group, at first it was just IV drips attached to their chairs, and slowly they became more and more interested in this newcomer, someone they hadnt seen before, someone who was suffering their first small defeat of cancer. They asked me why I was there, and I could slowly muster the words, brain tumor... and just as quickly as the words escaped my mouth, did I realize that I needed to keep them to myself. Because they looked taken aback, the men who sat around me, who were jokingly sharing stories minutes earlier were silent, grim faced. These were older men who hadnt imagined that a 24 year old would be battling cancer, and my grim response had dulled their day. That wasnt up to me, and I had failed myself.
These men didnt need to know my problem, and I was gravely disturbed by my need to tell them. They were fighting their own battles, and they didnt need to be further weighed down by me. I appreciated that they were concerned but it seemed like their problems were far greater than mine. They were the ones with chemo bags attached to their wheelchairs, who were suffering crippling pain and sadness at their terminal disease. It was not the other way round yet there I sat, hunched over in my chair. I was personifying this battle with cancer and it was then that I decided it would be the last time. I was not going to let me lose this fight, and I could not let anyone else think ever " he must be fighting cancer", because on that Tuesday I looked like a cancer patient, yet in my head I knew and I still know I am not a cancer patient. It still has not sunken in, and maybe it is stubbornness, or I have a strong constitution, but the pills havent affected me as the doctors said, and the surgery was intense but I was ready for the battle. More than surgery and all the bloodtests, poking and prodding, I learned more on that Tuesday because of those men who look terrified when I let them know a 24 year old had brain cancer, and I feel I ruined their day. I dont need to feel bad for myself or feel down, that is a terrible thing to do. There are people out there fighting much steeper battles. Of course my fight is immense, but I have not accepted for one second that this will beat me. But these men were in their last rounds, and I could see it in their eyes. They looked at me with the same look that they looked at their fallen friends, and it left a very bitter taste.
You have to be the person you want to be, I dont want to be seen as that cancer patient, I want to be seen as the guy who is fighting, and even when he is in that wheelchair, he uses all his energy to get out of it.
That Tuesday was a defining day for me, and I took a lot away from it. I did get better, I was put onto steroids that toughened up my immune system, and my nausea slowly dissipated. Slowly i was able to stomach more and more food, and as I sit writing to you now, I am on the couch in my sister and brother in-laws house, having just played with my one month old niece. It has only been one week since that Tuesday where I truly felt like I was dying, but more than anything it showed me what I needed to do to truly live.
I went through some invaluable lessons while I was in the US, and some were more hard learned than the others. Last Tuesday I hit the proverbial wall, it was 4 days after brain surgery and I considered myself to be on the road to recovery... the headaches were becoming less and less painful and I was in high spirits. When you go through brain surgery, you learn to not take things for granted. I woke up on the Tuesday morning with a painful searing feeling behind my eye, I can only compare this to someone getting a red hot poker and trying to twist it through the back of your eye, and once that pain begins to register with your central nervous system, it is then followed by an excruciating headache. That is how my Tuesday started, and I was not in high spirits. I tried to brush the headache aside by watching some TV and having a skype session, which was not ideal as I forgot to pay attention to the nausea slowly gathering momentum form within. It was becoming increasingly hard for me to keep food down, and I had already had one occasion of late night wretching.
My parents registered that I was going to be unplayable as I was having difficulty putting some food in my tummy and my refusal to awake from my slumber. I had been warned that I would only truly feel the effects of surgery 3-4 days after surgery, but seeing that I was out of ICU in just one day, I felt I was ahead of the curve. In order to try keep the vicodin from eating my stomach wall, my parents and I forced some oatmeal down. This would be a rued decision later on in the day... you can foresee my demise. My headache gradually began to worsen along with my nausea, but I continued to fight the pain and turn down any nausea medication. Here is some advice if you ever find yourself on prescription medication, take your pills if that is what it says on the script... a neuro surgeon professor knows better than I do.
As I got wheeled around the hospital I looked more and more like a cancer patient, the colour begins to drain from my face, and slowly my complexion becomes more similar to that of a sheet and less like a human. I slump further down in my wheelchair as the burden of the challenge begins to weight heavier on my shoulders and my parents attempts at luring me out of this state are becoming less and less promising. Slowly the gravity of my battle begins to be identifiable, and my climb to the top of this mountain seems sheer. Where did my life go wrong, that this had to happen? These were the questions I was asking myself, the questions I needed to ask in order to get some clarity and some perspective, because as I was being wheeled around I was being grouped with other people who were in wheelchairs, who also had shaved heads and a very pale skin complexion. What i failed to recognize then was that I was being sat next to the people who were terminally ill with cancer, and they were all talking amongst one another, finding out each others prognosis. They saw me get wheeled into their group, at first it was just IV drips attached to their chairs, and slowly they became more and more interested in this newcomer, someone they hadnt seen before, someone who was suffering their first small defeat of cancer. They asked me why I was there, and I could slowly muster the words, brain tumor... and just as quickly as the words escaped my mouth, did I realize that I needed to keep them to myself. Because they looked taken aback, the men who sat around me, who were jokingly sharing stories minutes earlier were silent, grim faced. These were older men who hadnt imagined that a 24 year old would be battling cancer, and my grim response had dulled their day. That wasnt up to me, and I had failed myself.
These men didnt need to know my problem, and I was gravely disturbed by my need to tell them. They were fighting their own battles, and they didnt need to be further weighed down by me. I appreciated that they were concerned but it seemed like their problems were far greater than mine. They were the ones with chemo bags attached to their wheelchairs, who were suffering crippling pain and sadness at their terminal disease. It was not the other way round yet there I sat, hunched over in my chair. I was personifying this battle with cancer and it was then that I decided it would be the last time. I was not going to let me lose this fight, and I could not let anyone else think ever " he must be fighting cancer", because on that Tuesday I looked like a cancer patient, yet in my head I knew and I still know I am not a cancer patient. It still has not sunken in, and maybe it is stubbornness, or I have a strong constitution, but the pills havent affected me as the doctors said, and the surgery was intense but I was ready for the battle. More than surgery and all the bloodtests, poking and prodding, I learned more on that Tuesday because of those men who look terrified when I let them know a 24 year old had brain cancer, and I feel I ruined their day. I dont need to feel bad for myself or feel down, that is a terrible thing to do. There are people out there fighting much steeper battles. Of course my fight is immense, but I have not accepted for one second that this will beat me. But these men were in their last rounds, and I could see it in their eyes. They looked at me with the same look that they looked at their fallen friends, and it left a very bitter taste.
You have to be the person you want to be, I dont want to be seen as that cancer patient, I want to be seen as the guy who is fighting, and even when he is in that wheelchair, he uses all his energy to get out of it.
That Tuesday was a defining day for me, and I took a lot away from it. I did get better, I was put onto steroids that toughened up my immune system, and my nausea slowly dissipated. Slowly i was able to stomach more and more food, and as I sit writing to you now, I am on the couch in my sister and brother in-laws house, having just played with my one month old niece. It has only been one week since that Tuesday where I truly felt like I was dying, but more than anything it showed me what I needed to do to truly live.
Thursday 2 February 2012
Waiting for time
So its me, Brad, I'm back and im not writing to you from the other side of the grave. I have been through two sets of surgery and they have been both been the two scariest moments of my life. I have never been one for nostlagia or reflection, but when you are lying on a table waiting to have someone tinker around in your brain, you think about a lot of things. The biopsy was the smaller of the two operations and I was fortunate enough that I was discharged from Hospital the afternoon of my surgery. That was good news because as much as I respect hospitals and the tremendous of good that they do, I can honestly say that the noises you hear in those hospitals will wake you up from any medicated sleep you may be in. Once I had been discharged from the hospital after the surgery, I basically sprinted out the doors in some sort of medicated attempt at not recognizing my own frailty. That time would come.
All I had to do to ensure I could go home was to walk down corridor, and I knew I would be able to do it. Walk, I do that everyday... except its a little different when someone has been poking and prodding microscopic instruments in your brain. With all of that going on, all I wanted to do when I awoke from surgery was speak to the people who mean the most to me. Those few seconds that hear their voices gives the enough courage to go through the operation a thousand times. Those people are the one whohave kept me ticking through this whole ordeal and I could never have done it without you. I have learnt so much about myself these last few weeks, but almost more than anything else, I have learnt peoples unbelievable compassion for others who are undergoing moments of hardship. People I have never met in my life appeared, and they did not just appear, they went out of their way to ensure that they were there for me because somehow, my story reached them and they saw it out of their kindness of their heart to come and support me. I personally want to thank Victoria and Barry Behr, and Janet Brown. Those 3 people went out of their way to offer any service that they could. I had never met these people before, yet they made sure that we met and that they parted with gifts that exceeded anything I could have ever asked for. These are the moments that made everything a little easier, when you hear that familiar South African accent, or a common talk of home. Thank you once again.
So now that the biopsy was done, it was back to the hotel and the waiting game slowly begins to tighten its grip around my neck as I begin to talk less and less frequently. I know what the biopsy's function was, and I needed to find out the results, except Dr Harsh will only receive the results the following day, and that is with all his reputation trying to force it out of the pathology labs. So once we get back to the hotel, I chat to friends and catch up on what we can, as it appears that I lost another day to surgery. It was the beginning of a week that I lost, but gained so much more in the process, I just didnt know it yet.
We wake up on the Wednesday morning. I am feeling good considering I underwent surgery the previous day, that was until I tried to wee. The catheter is perhaps my least liked equipment, it is an aid shoved up your gentlemens area in order to aid the process of urinating during surgery and times of incapacitation. They did not prep me for this part of recovery, everything seems raw and is exceedingly painful to pee... But I have to get it out, even though it results in me being double bent. Wednesday slowly filters by, as we eagerly wait for results of the pathology reports. We know that Griff is in surgery from 11am until 8pm that evening, and we need to stay close to my phone as it is his direct line. With every passing second, I begin to scratch away at my biopsy dressing, and I can feel that there is something in the pipeline. I constantly ask my parents if todays surgery was the last one, as chemo and radiation begin to show up as the likely options. Phew, chemo and radiation, it was a hard reality accepting these, not because I am afraid of them or because I am afraid of losing my hair, I am not. They are just harsh realities to accept as it therefore means, You Have Cancer and you need these two things to rid your body of this disease.
In an attempt to forget about what is going on and what time it is, we go for dinner... although we can all feel our eyes being drawn to the little black device that will speak the direction of treatment.
7:30 and Griff calls, I hand the phone to my dad and he takes it outside, after about 5 minutes of conversation he comes back inside pulling the thumbs up, he says "Its a low grade two,but you have a decision to make", oh dear, more decisions for me to make. The last ones werent particularly easy, so I didnt have a good feeling about this one. My dad informs me that it is a low grade two which means low malignancy. The flip side of this is that Griff wants me on the table again tomorrow morning at 7:15, just when I was looking forward to a sleep in because my parents said we werent having any more operations. My dad also tells me that Griff wants to chat to me to get my opinion of this whole thing. I have no where near to the qualifications required in order to speak to this man about neuro surgery, so what ever he recommends, I am going ahead with.
My alarm didnt need to be set, I knew it was 4am as I could hear the minutes of my life draw over my body. It was a very surreal feeling, waking up on a day that could have been my last, and it was commissioned by me, my name was on the indemnity form that I signed stating that I give them permission to go ahead and cut my head open in order to get to the middle of this whole thing. I yet again skype with loved ones and make phone calls prior to getting to the hospital. Those last few calls are ones that I need to store in me during the next few hours that I would be asleep, I needed them to give me fight and help to keep me calm. The preop admissions are the exact same as the biopsy, except that I am now seated on bed 1, which is pole position bed or the one situated by the main Operating Room, the one with all the big fancy machines. I lie in bed 1 getting poked again, and it draws on me that today could very really be my last day, but as quickly as that fear arises, i wash it out and remove it from my though. my family and i have come half way around the world to see the best, and these guys see thousands of cases like mine everyday... wrong! my case is a pineal tumor that account for 1% of brain tumors, so that changed things a bit for me,but it didnt change my outlook on this whole thing, i maintained my though process and i knew why i was there. I lay on the bed and was constantly kept aware of my parents, and they tried their best to keep my mind busy. 7 am comes around a lot sooner than thought and I am aware that I have 15 minutes before being wheeled in, because these guys run according to the clock.
So I speak to my sisters for one last time before I take a scheduled 7 hour sleep, and I speak to Alice and Brenty and they wish me a goodnight sleep. Finally my transport arrives and they wheel me off. Fear is quickly washed out by the drugs that begin to circulate around my body, I feel a sense of numbness, as I realise that this is the moment I have been building up to since I was diagnosed with the brain tumor. I am here to take this thing out, and I would rather die trying to take it out, than let it kill me, at least it would be on my terms that we both die.
I hobble over to OR room 1, operating table 1. The machinery in this room is mind blowing and I cannot begin to understand what each machine in there is for, but i can liken it to a symphony and that each piece has its music to play. The anasthetic begins to ring ever truer in my ears, my eyes become light and before I know it 7 hours of my life pass by in a blink. And it turns out it was an eventful 7 hours. They lost parts of my motor neurons on my left hand side from working, along with taking out a large area of the tumor. With all of this happening, all I hear is my welcoming voices of my parents as they try to coax me out of the sleep I have been in. I hug them and am so grateful that they are there with me for this, Its a very defining feeling, knowing you have climbed the mountain, and run down the other side, I had climbed my mountain, I had let Dr Harsh and his team work in the deepest parts of my brain, and they achieved what they set out to, and one of them was even kind enough to give me a haircut during the occasion.
I am still healing from the surgery one week on, but I am so grateful that I had it. These surgeons do not realize how massively they are changing peoples lives on a daily basis. This whole surgery procedure catapults me back in to ICU and under the protection of some incredible nurses. These are the people that keep the hospitals going as they seek to answer every groan and movement with a remedy. My fight with this monster is not over yet,
All I had to do to ensure I could go home was to walk down corridor, and I knew I would be able to do it. Walk, I do that everyday... except its a little different when someone has been poking and prodding microscopic instruments in your brain. With all of that going on, all I wanted to do when I awoke from surgery was speak to the people who mean the most to me. Those few seconds that hear their voices gives the enough courage to go through the operation a thousand times. Those people are the one whohave kept me ticking through this whole ordeal and I could never have done it without you. I have learnt so much about myself these last few weeks, but almost more than anything else, I have learnt peoples unbelievable compassion for others who are undergoing moments of hardship. People I have never met in my life appeared, and they did not just appear, they went out of their way to ensure that they were there for me because somehow, my story reached them and they saw it out of their kindness of their heart to come and support me. I personally want to thank Victoria and Barry Behr, and Janet Brown. Those 3 people went out of their way to offer any service that they could. I had never met these people before, yet they made sure that we met and that they parted with gifts that exceeded anything I could have ever asked for. These are the moments that made everything a little easier, when you hear that familiar South African accent, or a common talk of home. Thank you once again.
So now that the biopsy was done, it was back to the hotel and the waiting game slowly begins to tighten its grip around my neck as I begin to talk less and less frequently. I know what the biopsy's function was, and I needed to find out the results, except Dr Harsh will only receive the results the following day, and that is with all his reputation trying to force it out of the pathology labs. So once we get back to the hotel, I chat to friends and catch up on what we can, as it appears that I lost another day to surgery. It was the beginning of a week that I lost, but gained so much more in the process, I just didnt know it yet.
We wake up on the Wednesday morning. I am feeling good considering I underwent surgery the previous day, that was until I tried to wee. The catheter is perhaps my least liked equipment, it is an aid shoved up your gentlemens area in order to aid the process of urinating during surgery and times of incapacitation. They did not prep me for this part of recovery, everything seems raw and is exceedingly painful to pee... But I have to get it out, even though it results in me being double bent. Wednesday slowly filters by, as we eagerly wait for results of the pathology reports. We know that Griff is in surgery from 11am until 8pm that evening, and we need to stay close to my phone as it is his direct line. With every passing second, I begin to scratch away at my biopsy dressing, and I can feel that there is something in the pipeline. I constantly ask my parents if todays surgery was the last one, as chemo and radiation begin to show up as the likely options. Phew, chemo and radiation, it was a hard reality accepting these, not because I am afraid of them or because I am afraid of losing my hair, I am not. They are just harsh realities to accept as it therefore means, You Have Cancer and you need these two things to rid your body of this disease.
In an attempt to forget about what is going on and what time it is, we go for dinner... although we can all feel our eyes being drawn to the little black device that will speak the direction of treatment.
7:30 and Griff calls, I hand the phone to my dad and he takes it outside, after about 5 minutes of conversation he comes back inside pulling the thumbs up, he says "Its a low grade two,but you have a decision to make", oh dear, more decisions for me to make. The last ones werent particularly easy, so I didnt have a good feeling about this one. My dad informs me that it is a low grade two which means low malignancy. The flip side of this is that Griff wants me on the table again tomorrow morning at 7:15, just when I was looking forward to a sleep in because my parents said we werent having any more operations. My dad also tells me that Griff wants to chat to me to get my opinion of this whole thing. I have no where near to the qualifications required in order to speak to this man about neuro surgery, so what ever he recommends, I am going ahead with.
My alarm didnt need to be set, I knew it was 4am as I could hear the minutes of my life draw over my body. It was a very surreal feeling, waking up on a day that could have been my last, and it was commissioned by me, my name was on the indemnity form that I signed stating that I give them permission to go ahead and cut my head open in order to get to the middle of this whole thing. I yet again skype with loved ones and make phone calls prior to getting to the hospital. Those last few calls are ones that I need to store in me during the next few hours that I would be asleep, I needed them to give me fight and help to keep me calm. The preop admissions are the exact same as the biopsy, except that I am now seated on bed 1, which is pole position bed or the one situated by the main Operating Room, the one with all the big fancy machines. I lie in bed 1 getting poked again, and it draws on me that today could very really be my last day, but as quickly as that fear arises, i wash it out and remove it from my though. my family and i have come half way around the world to see the best, and these guys see thousands of cases like mine everyday... wrong! my case is a pineal tumor that account for 1% of brain tumors, so that changed things a bit for me,but it didnt change my outlook on this whole thing, i maintained my though process and i knew why i was there. I lay on the bed and was constantly kept aware of my parents, and they tried their best to keep my mind busy. 7 am comes around a lot sooner than thought and I am aware that I have 15 minutes before being wheeled in, because these guys run according to the clock.
So I speak to my sisters for one last time before I take a scheduled 7 hour sleep, and I speak to Alice and Brenty and they wish me a goodnight sleep. Finally my transport arrives and they wheel me off. Fear is quickly washed out by the drugs that begin to circulate around my body, I feel a sense of numbness, as I realise that this is the moment I have been building up to since I was diagnosed with the brain tumor. I am here to take this thing out, and I would rather die trying to take it out, than let it kill me, at least it would be on my terms that we both die.
I hobble over to OR room 1, operating table 1. The machinery in this room is mind blowing and I cannot begin to understand what each machine in there is for, but i can liken it to a symphony and that each piece has its music to play. The anasthetic begins to ring ever truer in my ears, my eyes become light and before I know it 7 hours of my life pass by in a blink. And it turns out it was an eventful 7 hours. They lost parts of my motor neurons on my left hand side from working, along with taking out a large area of the tumor. With all of this happening, all I hear is my welcoming voices of my parents as they try to coax me out of the sleep I have been in. I hug them and am so grateful that they are there with me for this, Its a very defining feeling, knowing you have climbed the mountain, and run down the other side, I had climbed my mountain, I had let Dr Harsh and his team work in the deepest parts of my brain, and they achieved what they set out to, and one of them was even kind enough to give me a haircut during the occasion.
I am still healing from the surgery one week on, but I am so grateful that I had it. These surgeons do not realize how massively they are changing peoples lives on a daily basis. This whole surgery procedure catapults me back in to ICU and under the protection of some incredible nurses. These are the people that keep the hospitals going as they seek to answer every groan and movement with a remedy. My fight with this monster is not over yet,
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