Four Years On...
"It's so hard to forget pain, but it's even harder to remember sweetness. We have no scar to show for happiness. We learn so little from peace." Chuck Palahniuk
Again my blog has escaped me and I am months past the last entry. I really did like my last entry and I have realized time again that the more chaotic my life and mind are, the less likely I am to find the inner peace to form a single thought strong enough to translate into an entry. This was never a blog of my sub conscious babbling. I have tried so hard to make every entry matter and be something I could be proud of but for some reason those moments of clarity and inspiration are less and less.
Since I last wrote, I went to Canada with my daughter to see my family which was both therapeutic and lovely. There is something so effortless and comfortable about being with your clan - just like the soothing feeling of your favorite pair of sweats. And it fills my heart with such joy to see my daughter so in love with her cousins. She thrives so much around them and it brings out the extrovert in her. It makes it that much harder to deal with the distance and the fact that we only see each other once if not twice a year if lucky. My side of the family is very small and we need to stick together.
I also started working a reduced workload which has as predicted been very hard to do. I struggle so much with just letting go and saying no. I want to deliver and I want people to feel they can rely on me. Being on sick leave doesn't exactly instill that vote of confidence that I am after. But I am really trying this time and not losing out on the opportunity that I have been given. Rest, relax and reboot are my aims of the day. I am also embarking on a happiness project because I have realized that I am not exactly where I want to be. The last four years have taken a clear toll on me and I know myself well enough to know when I am not being the person I want to be. I so desperately want to be that person who squeezes everything out of life and appreciates the good stuff. I continue to live in this perpetual state in which I numb the world out through white noise. I am here of course and I smile, laugh and say the right things but inside I feel so bloody tired of making light of it all. So I will see how it goes and if anyone is curious, I am reading "The Happiness Project" by Gretchen Rubin. It is definitely worth a read if you want to clear out your physical and mental clutter.
And to finish off - it has been a big week for me but I forgot to properly acknowledge it so I am doing it now. Firstly it was my 4 year cancerversary which is both a painful reminder of all the struggles and suffering I have endured but also a huge celebration that I am still here and cancer free. Not everyone is so lucky and considering the extra bonus round I had, I am especially grateful to be here. It is so weird when this day comes around - it makes me sit back and revisit all those events that took me to today. The roller coaster of emotions that range from shock, fear, bravery, anger and finally relief. My cancer story is a patchwork quilt made up of so many colors, textures and experiences that will stay with me forever. In addition, we also had the International Triple Negative Breast Cancer Awareness Day which is of course of importance to me and my family. TNBC is one nasty ass bitch that tends to target young women and be much more ruthless in its wrath. We currently have no targeted treatment for TNBC unlike the other more common kinds of the disease so research remains essential to getting to a point where there is a specialist kind of black ops treatment available that will kick TNBC into another stratosphere. But for now I will remain hopeful and optimistic that the kind of experimental treatment they used on my relapse (and that so far has worked!) will become the norm and TNBC will no longer have the sinister reputation it does today. I thought it was fitting to roll back the clock and repost my first ever cancerversary entry on this blog. I think it so fittingly captures the raw emotion, denial and shock that comes with a cancer diagnosis especially one that came with absolutely no warning. It is strange re-reading my own words and how much more optimistic and less weathered by trauma I was back then. That girl who wrote those words could teach the me of today a thing or two. So let's hop in the time machine...
Four years ago in a hospital exam room in Oslo,Norway:
Me: So I just wanted to come in to make sure everything was healing ok – you know me worry worry worry about everything.
Nurse: I see you are alone today. You usually always come with your husband but he isn’t with you today.
Me: No – I didn’t want to bother him with a routine appointment.
Nurse: Hmmm…
Doctor: Well everything looks to be healing fine but I think you should sit down. (She stares blankly at me, looks at her computer screen and takes a breath). I have some bad news.
Me: What do you mean?
Doctor: We have found malignant cells in your biopsy. You have breast cancer.
Me: What does that mean?
Doctor: You have cancer.
The shock took over and I was trembling with fear. I handed my phone to the nurse and told her to call my husband and tell him to come now. There was no way I could get the words out to him myself. There was no way I could tell him what had just happened. The next minutes that ticked by felt surreal and like I wasn't really there, as they told me what I would need to be ready for and that so many women survive breast cancer these days.
Me: I am sorry but I am not listening to a word you are saying. I am somewhere else.
Doctor: Ok. I am sure this all very upsetting for you.
Truth be told I was using every ounce of energy to hold the pieces of myself together and not fall apart…not yet. A million questions zoomed around my brain – none of them good. It was just so hard to believe it was happening to me. The moment my husband arrived in the room, I felt more secure. I wasn’t alone. He was so strong, my anchor and just sat down beside me, held my hand and asked the right questions. He didn’t flinch, he didn’t cry – he kept it together for me which gave me so much strength. That is the type of person you want beside you when your world crumbles – a sturdy stable refuge when everything else is spinning out of control around you.
When we walked out into the corridor, the tsunami that had been growing in strength and momentum finally crashed. I ran into the washroom and dialed my mother’s number. It didn't matter that it was the middle of the night, I needed her. She was the first person I told those three words to (amidst uncontrollable sobs of the deepest pain I have ever felt) – I have cancer.
Those three words changed my life. They changed how I looked, how I felt and how I see. Of course it was predominantly a nightmare but I have gained such deep insight into myself and life. An insight that would have taken a lifetime to learn. So it is not all bad.
So one year on, I am happy to be able to call myself a survivor. I am here, I am breathing, I am living. And in the words of my husband in those dark early days, “ We will beat this, no matter what.” And we did.
Love, OBB
Showing posts with label working after cancer.. Show all posts
Showing posts with label working after cancer.. Show all posts
Sunday, March 8, 2015
Saturday, March 22, 2014
Putting your Health First
Again it has been about a month since my last entry and it is clear to everyone that this blog is proving to be more and more difficult to stay on top of. This is what happened for over a decade when life got in the way of doing what I love and my creativity dried up when other parts of my life picked up into a frenzying pace. It was only when illness forced me to slow down, that my love of writing was able to come alive again. But I don't want this blog to end because life got in the way, my journey is far from over so I will write when I can and keep you abreast of the important stuff.
I have been thinking a lot about something that I have been told hundreds of times over the last three years. It is something that friends, family, coworkers, my medical team and even strangers have told me over and over. "You must put your health first" they all tell me. Such simple advice but oh so difficult to actually do. Because honestly how many of us actually do that on a regular basis? Some of us smoke, others binge drink, most dont get the required exercise or your 5 a day and I am certain we all sweat the small stuff much more then we ought to. The truth is that life gets in the way of putting ourselves first more often than not. I am the first to put my hand up and say that I am terrible at this. And please don't think that I am playing the victim or martyr card here because I am not but rather I am just being honest. Despite having been seriously ill for about three years, I still push myself to complete exhaustion because I want to be the best mom, the best employee, the best wife and the best friend. But you know what? I am failing in many of these areas right now.
After over two months away from Cancer Town, I rushed from my last meeting to the car to make it to my palliative dr appointment in town. It felt weird walking through those two doors again and I felt so so so far away from that person who used to walk these corridors pulling an IV bag behind her. I was different now - my hair had grown enough so that it was creeping down my neck, my cheeks were rosy and I was dressed like a businesswoman ready to bust some balls. No one could have guessed that this woman pushing the elevator button was actually a patient - maybe a pharma rep or something! It was empowering. But when I arrived in the waiting area, I collapsed on the sofa in utter exhaustion and the receptionist who immediately recognised me remarked how it had been a long time, that I looked very tired and that she had cold water for me to drink. And you know what? God I was. My levels of tiredness have become far more complex and layered since cancer - there is the normal crap feeling, being very tired, excessively tired, ohmigod my whole body is screaming out in pain tired and then tiredness that actually stops me in my tracks and forces me to submit to it. I never even experienced these extremes after my first cancer round but the second one has been much more dramatic. I know discussing the different levels of tiredness can be so bloody boring and I hate talking about it myself but it is unfortunately relevant in my life right now. But back to the doctor - she could see how worn out I was and that I was running on empty. I described how I was feeling - the feeling of being out of control and completely restless, the fear of what could still happen, my obsession with trying to do it all and the fact that it was just not working. She actually understood me and the person I am. She knew that I was just not one of those people who could easily prioritise mysef and my health. No matter what I had been through, I would still try and do everything like I had done before and if not try to do even more. I talked about my obsessive need to try and make up for lost time despite knowing full well that I couldn't fit 6 months into the last 5 years that I felt had been taken from me. And the feeling of guilt that despite having been through two near death experiences, I still didn't "get it." That is the problem I find - I am very good at articulating how I feel in very open and honest ways and using fancy terms to describe what I am going through like PTSD, anxiety disorders, catastrophic thinking, etc...and it gives people the false impression that I am completely in control of myself and my life. The truth is that I am not. I am killing myself at work and doing so much more then I should be because I am so desperate to feel like I am contributing and adding value and because work is actually a very big and important part of my life. But on top of that stress, I also worry about things like a bump in the night and have been known to go upstairs and check multiple times in a night. I get scared when my husband or daughter goes out alone because of the fear that something might happen. I make decisions based on fear every single day. I get angry when people dont stay in touch yet I simply dont have the energy or concentration to be in regular contact with family and friends and I feel so guilty about it. And I push through the barrier of exhaustion many many times a day. When you list out those things suddenly it doesnt look like someone who is in control of things at all.
That is the thing with cancer that is often overlooked. We are so well looked after during treatment and we exist in soft cocoon like structures that protect us from the harshness of the outside world. People excuse our shortcomings and no one expects anything from you. Your focus is to survive and that is all. Everyone around you just wants to help and make things easier in any way they can. And as the patient, you have so much more time to do things that make you happy - be with your friends and those you love, have lazy mornings, do yoga and meditate. Basically it allows you to take time for yourself and it may be the first time in your life that you have been able to do so. There are so many services available for you to use and you almost never feel alone. But what happens when that treatment is over? Who looks after you then? I really think that life post cancer can be a truly terrifying place and there is little thought or effort put into helping people transition back from it. You just dont turn back into the person you were before and in most cases you never will be the same again. In cases of extreme treatment, you can suffer from a lifetime of side effects ranging from the physical, emotional and psychological.Not to mention the fear that it may come back - something I understand all too well. For me - in both of my cancer cycles, I had to proactively seek out help as there was very little offered to me and I felt like i had to navigate this road I had never been down mostly on my own. Often times, I had to convince mental therapists that I needed help dealing with post traumatic stress and that my fears, hypervigilance and anxiety were hindering my day to day living. My transition back to work was also pretty much lead by myself as I navigated the choppy waters of being the woman who had breast cancer...again. No one knew what my capacity was and many were clearly uncomfortable being around me or blurted out utterly innappropriate things across the salad bar at lunch. It was awkward and difficult as I tried to figure out what my role was again and how I could once again feel like I was contributing towards something because no one wants to feel like "dead wood." It can be really hard to try and juggle all these things yourself especially as you continually worry about that next scan and what will come of it. Because despite a huge victory, I know, my doctors know, my husband knows that we are so far from out of the woods and we are still dealing with some less then ideal odds. I live every day with that uncertainty. I did tell my doctor yesterday about that fear. How I am working so incredibly hard to build a life up again for the second time yet am continually thinking of what will happen if something goes wrong with the next scan in the summer. It is exhausting having to keep building, to keep going. I kind of think of it like when you build a sandcastle too close to the waters edge and every time the tide creeps on up on you and washes your castle away. But unperturbed, you begin to build it again and hope that this time you will have judged a safe distance. I feel like I am on that beach sweating and swearing my way through a second attempt at building the best and brightest castle that will stand for a very very long time. As i have mentioned so many times before - you just have to hope and never give up in this cancer game no matter how tired and frustrated you get. My castle will rise again.
OBB
I have been thinking a lot about something that I have been told hundreds of times over the last three years. It is something that friends, family, coworkers, my medical team and even strangers have told me over and over. "You must put your health first" they all tell me. Such simple advice but oh so difficult to actually do. Because honestly how many of us actually do that on a regular basis? Some of us smoke, others binge drink, most dont get the required exercise or your 5 a day and I am certain we all sweat the small stuff much more then we ought to. The truth is that life gets in the way of putting ourselves first more often than not. I am the first to put my hand up and say that I am terrible at this. And please don't think that I am playing the victim or martyr card here because I am not but rather I am just being honest. Despite having been seriously ill for about three years, I still push myself to complete exhaustion because I want to be the best mom, the best employee, the best wife and the best friend. But you know what? I am failing in many of these areas right now.
After over two months away from Cancer Town, I rushed from my last meeting to the car to make it to my palliative dr appointment in town. It felt weird walking through those two doors again and I felt so so so far away from that person who used to walk these corridors pulling an IV bag behind her. I was different now - my hair had grown enough so that it was creeping down my neck, my cheeks were rosy and I was dressed like a businesswoman ready to bust some balls. No one could have guessed that this woman pushing the elevator button was actually a patient - maybe a pharma rep or something! It was empowering. But when I arrived in the waiting area, I collapsed on the sofa in utter exhaustion and the receptionist who immediately recognised me remarked how it had been a long time, that I looked very tired and that she had cold water for me to drink. And you know what? God I was. My levels of tiredness have become far more complex and layered since cancer - there is the normal crap feeling, being very tired, excessively tired, ohmigod my whole body is screaming out in pain tired and then tiredness that actually stops me in my tracks and forces me to submit to it. I never even experienced these extremes after my first cancer round but the second one has been much more dramatic. I know discussing the different levels of tiredness can be so bloody boring and I hate talking about it myself but it is unfortunately relevant in my life right now. But back to the doctor - she could see how worn out I was and that I was running on empty. I described how I was feeling - the feeling of being out of control and completely restless, the fear of what could still happen, my obsession with trying to do it all and the fact that it was just not working. She actually understood me and the person I am. She knew that I was just not one of those people who could easily prioritise mysef and my health. No matter what I had been through, I would still try and do everything like I had done before and if not try to do even more. I talked about my obsessive need to try and make up for lost time despite knowing full well that I couldn't fit 6 months into the last 5 years that I felt had been taken from me. And the feeling of guilt that despite having been through two near death experiences, I still didn't "get it." That is the problem I find - I am very good at articulating how I feel in very open and honest ways and using fancy terms to describe what I am going through like PTSD, anxiety disorders, catastrophic thinking, etc...and it gives people the false impression that I am completely in control of myself and my life. The truth is that I am not. I am killing myself at work and doing so much more then I should be because I am so desperate to feel like I am contributing and adding value and because work is actually a very big and important part of my life. But on top of that stress, I also worry about things like a bump in the night and have been known to go upstairs and check multiple times in a night. I get scared when my husband or daughter goes out alone because of the fear that something might happen. I make decisions based on fear every single day. I get angry when people dont stay in touch yet I simply dont have the energy or concentration to be in regular contact with family and friends and I feel so guilty about it. And I push through the barrier of exhaustion many many times a day. When you list out those things suddenly it doesnt look like someone who is in control of things at all.
That is the thing with cancer that is often overlooked. We are so well looked after during treatment and we exist in soft cocoon like structures that protect us from the harshness of the outside world. People excuse our shortcomings and no one expects anything from you. Your focus is to survive and that is all. Everyone around you just wants to help and make things easier in any way they can. And as the patient, you have so much more time to do things that make you happy - be with your friends and those you love, have lazy mornings, do yoga and meditate. Basically it allows you to take time for yourself and it may be the first time in your life that you have been able to do so. There are so many services available for you to use and you almost never feel alone. But what happens when that treatment is over? Who looks after you then? I really think that life post cancer can be a truly terrifying place and there is little thought or effort put into helping people transition back from it. You just dont turn back into the person you were before and in most cases you never will be the same again. In cases of extreme treatment, you can suffer from a lifetime of side effects ranging from the physical, emotional and psychological.Not to mention the fear that it may come back - something I understand all too well. For me - in both of my cancer cycles, I had to proactively seek out help as there was very little offered to me and I felt like i had to navigate this road I had never been down mostly on my own. Often times, I had to convince mental therapists that I needed help dealing with post traumatic stress and that my fears, hypervigilance and anxiety were hindering my day to day living. My transition back to work was also pretty much lead by myself as I navigated the choppy waters of being the woman who had breast cancer...again. No one knew what my capacity was and many were clearly uncomfortable being around me or blurted out utterly innappropriate things across the salad bar at lunch. It was awkward and difficult as I tried to figure out what my role was again and how I could once again feel like I was contributing towards something because no one wants to feel like "dead wood." It can be really hard to try and juggle all these things yourself especially as you continually worry about that next scan and what will come of it. Because despite a huge victory, I know, my doctors know, my husband knows that we are so far from out of the woods and we are still dealing with some less then ideal odds. I live every day with that uncertainty. I did tell my doctor yesterday about that fear. How I am working so incredibly hard to build a life up again for the second time yet am continually thinking of what will happen if something goes wrong with the next scan in the summer. It is exhausting having to keep building, to keep going. I kind of think of it like when you build a sandcastle too close to the waters edge and every time the tide creeps on up on you and washes your castle away. But unperturbed, you begin to build it again and hope that this time you will have judged a safe distance. I feel like I am on that beach sweating and swearing my way through a second attempt at building the best and brightest castle that will stand for a very very long time. As i have mentioned so many times before - you just have to hope and never give up in this cancer game no matter how tired and frustrated you get. My castle will rise again.
OBB
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