Being NED

I am late to the party and I am sorry for that. I know silence after a scan can be interpreted as something bad and I don’t ever want any of you to worry. Most of you will already know by now my news but for those of you still waiting…

I am 100% NED!!!! No evidence of disease again. Talk about bitch slapping those malignant cells all the way into next week!

It is always a shock when you get good news and almost a sort of anti-climax. I had convinced myself the night before and the morning of my appointment  that it would be bad. My husband and I had discussed our game plan the evening before the appointment to prepare ourselves for whatever might be. You never go into battle unprepared as we had previously learned. His worst fear was that something would have light up needing further investigation and mine was that I would be told I was dying. Who is the catastrophist here I wonder?  I kissed my daughter goodbye that morning and wondered again whether this would be the last normal moment between us before my world came crashing down again. So many emotions, so many thoughts brought up to the surface.

But the battle plan was not needed and it appears that our enemy has been killed off. For the first in a while I am starting to wonder if maybe this cancer isn’t ever going to return? I know I can’t totally stop worrying about my silent enemy but I do know that 2 clear scans in one year is one hell of a reason to celebrate. My doctor was really pleased but always the cautious one. When I asked him what it meant to have two clear scans in a row in terms of my future he said that the results were “nice.” What a pokerface this guy has and he even told me that he won a pokerface competition! I started thinking later that evening about how this latest news will influence my long term relationship with cancer. It seems like we are growing further and further apart from one another despite what a huge and all-consuming role it has played in my life for over three years now. Will my life really get past a point where cancer is no longer a part of it? It was so hard to imagine a life like that a year ago…where cancer has no purpose or power over me. It is also scary at times as I worry about having to fend for myself and not use my cancer crutch anymore. Will people suddenly expect more from me and excuse my shortcomings less? I said to my doctor that day that one of the things I still struggle with is that because I look good everyone assumes I am 100% strong and healthy. I most definitely don’t feel that way but after having a year of cancer free living, maybe expec tations will return and I will have to be “normal” again? Maybe this is hard to understand because it isn’t about having cancer again but it is about the long road to recovery that becomes harder and harder for others to understand the further out from the disease you become.  I am scared of failing, scared of disappointing people and scared of not hacking it. Cancer took some of the pressure off temporarily but it is all seems to be returning again and I don’t have the same coping mechanisms.

But enough with the mindfuck side of this whole thing, this is a time to dance on the rooftops and drink bubbles until you can fly. I hope you all join me in this celebration from around the world. I will save another entry to get into some of the other issues that came out of Tuesday’s appointment that are heavier in topic because this entry is solely devoted to saying “I am cancer free.”

From your dear friend,

In Remission

Game Day

The time that elapses coming up to a big scan is always "dead time" for me. Like a wave rushing to shore that gets slower and slower until it finally crashes in a Big Bang. I am in the slow mode right now and am finding it hard to navigate this limbo until the crash where all things become known. Things have been going really well for me lately and I have finally become excited for the future again without fearing it as much. I have managed to get my crap together for the third time and it feels good. But now as this day gets closer and closer, I felt like time has started to stand still and will remain so until we got through this hump. It is like pre scan, during scan and post scan time periods and right now I feel this genuine reluctance to let myself get really happy about future plans until I know things are going to be okay. I tell people all the time that by thinking this way it in no way means that I am thinking negatively - I am just being prepared for all possible outcomes. It is safer that way at least for me especially considering my track record. I never want to be caught out ever again by that bitch called cancer.

I have found the weekend exhausting and emotional. And my level of frustration over some physical issues is making me mad. I wanted to scream and cry all at the same time last night because of this damn chest pain that has picked up momentum in the last few weeks. I am just so sick of being in pain and of course my mind plays out a dozen different scenarios surrounding its origins. Any change in anything is utterly terrifying. In addition my stomach has been awful and I just feel sick pretty much after every time I eat. Being chronically bogged down by these chronic ailments all the time when I should be in pretty good shape is demoralizing and I cant exactly talk about it all the time because it is boring. But just because it is boring and constant doesn't make it disappear for me. I live with these things every day and my patience is wearing thin. I want to wake up and feel okay. It is so draining dragging this tired aching body around all day and I feel like my happy face often hides the pain. If i looked at myself most days, I would have no clue what I had been through nor what I am still dealing with. That can be the tricky bit - what truly lies beneath. Because I am the last person who wants to look how I feel and I put so much daily effort into looking like the person I hope I will one day actually feel like. However others can think that the outside matches the inside and not realise what burdens i am carrying along in my fabulous handbag.  Some days I feel like my bones are made of glass seeing as how fragile and weak they feel. I actually awake from the pain I feel when I sleep on my side and my hip presses into my mattress. What am I the bloody princess and the pea? But I keep trying and keep trudging on in the hope that all of this will one day be a bad dream I vaguely remember bits of.

For now - it is game day tomorrow and we will have to wait longer this time before we know what is the score. A whole week of wondering the what ifs until we sit down in a white sterile room trying to read the face of my oncologist again. I keep looking at my skin and pondering what is happening underneath. Are my cells behaving? Or have they commenced their own civil war again? One week is nothing and everything at the same time. So if you have a moment for me tomorrow around 10am send me some happy thoughts and here's hoping my next entry will again be nothing but good news!

Love and hugs from a slightly more fragile than normal OBB.

About Family

It seems like if you are lucky, you start out your life in love with your parents. They are your everything and are meant to give you infinite amounts of love and support, shelter and nourishment. I was no exception to that and as I have written before, was privy to a wonderfully rich childhood where I never felt deprived, unsupported or unloved. But we all eventually grow up and in that period start to demand our independence and desire to find our own place in this world – AKA teenage hood. We go through a time where we don’t need our family or parents so much and that is perfectly okay. Independence is a natural step in our evolution and most parents value their children’s desire for it. It is as one would say “a developmental milestone.” But what I have noticed in recent years is that the pendulum spins back around and we begin to need or perhaps just want to be with our family more. Maybe it is triggered by starting our own families or other major events that allow us to see what our parents saw all those years ago…what is really important.



I just finished having my mother here for 2 weeks and it was wonderful. Just this morning when we were heading out the door to the airport, I said to her what I would miss most – her company. I have loved having her in the other room, to sit with and have a tea, giggle over silly things from the past, take a walk, get a daily massage…just knowing that she was there when I came home was comforting. She felt the exact same way especially seeing as she lives alone back in Canada. Being intertwined in our little displaced family for this time made her feel good. We both acknowledged how lucky we are that we genuinely like to be around one another as that is definitely not the case for everyone. Of course we quarrel and disagree but more often than not we enjoy being together and I feel a genuine emptiness when she is gone. This morning at the airport, the tears flowed and thankfully I had had the foresight to use waterproof mascara that day (thank you Maybelline). As my daughter and I walked away, I really started crying and my little cherub starting to do the same without truly understanding why we were crying. All she knew was that her mommy was sad and that she should be too. It reminds me of one of my most vivid and earliest childhood memories. I woke up one morning to the sound of crying. I went downstairs to the family room and my whole family was weeping. Being the youngest by 5 years, I was at an emotional disadvantage and didn’t quite understand that everyone was crying because my grandma had died. I was maybe 2 or 3 years old so I just started to cry too just like my daughter did today. It is easier to fall in line than to hang back on the sidelines. Maybe that kind of sums up the idea of family – it is much nicer and far more comforting to be part of something than to exist on the outskirts. I value the idea of family so much more now and maybe in doing so sometimes pushes me to make unrealistic expectations of them. Because that is the other side of it – family can also be shrouded in deficiencies and dysfunctions. It is only natural really for a group of people who spend decades together to encounter some sort of konflicts. We all carry unspoken expectations of one another and can sometimes be overly honest and harsh with one another because “we are family.” We push the unconditional love bit a little too far at times. I do feel that I have learned so much about family from my own and try to instill the same ideals and qualities into team Norcan. You learn a lot about family in times of crisis and I have had more than my share of it these last few years. It is only natural to put far more pressure and expectation on family than friends but the chance for disappointment than becomes far greater. Even family doesn’t always react the way we want or wish and we often put each other onto the highest pedestals. I am not sure what is the magic ingredient here to making everyone happy - maybe it is impossible to achieve. All I know is that everyone should feel safe, included and loved regardless of environment or circumstance because more often than not, we all just want the best for one another and no one wishes any ill will. Because in my view -  life is far too short to quarrel over “stuff.” Unless someone has killed somebody else, you can get past it because the one certain thing is that you can never ever get time back. Once it has passed, it is gone forever. I understand all too well how fragile time is and hate to see it wasted. We sometimes lose sight of the important stuff and more importantly the big picture.

So as you can see I am quite melancholic and reflective in the wake of my mother’s departure. It is so hard to say goodbye especially with so many tough things around the corner. It feels like the fun times are over. The dreaded scan is in two weeks, summer holidays are done and I am already worrying about the dark cold winter approaching.  Talk about looking at the glass half empty! Everything seems so much easier basked in warm sunshine! Again I have no gut feel as to how this scan will go and my body feels quite numb. I know on some level my body is feeling stress though as it appears in different ways like the way I run my tongue across my gums to the point of inflammation, the constant burning in my stomach, difficulty concentrating…I recognize the signs. 7 months have dwindled down to a couple weeks all too quickly. Like I told my mother this morning – I cannot do this a third time. Twice was enough and I am done with interruptions. So it must be that life will just have to continue on for me and everything will be okay. But it does help to remember that whatever will be my mom will always be there for me. And an army of family and friends wielding swords and shields wildly at whatever enemy appears. Because that is what love is – just being there when it matters.

Nine Lives

Okay  this is getting downright ridiculous. I just deleted an entire blog entry for the third time in three weeks! I just cant find my groove and I just cant figure out what to write. I know for certain that I want to write but the right words keep escaping me. Maybe my life is just too boring and non eventful now compared to the previous entries that were full of crisis and real life-death moments. The mundane just isnt as inspiring to me. Work, home, tv, sleep...

I just got home from watching my first adult movie in about 5 years and it was a movie about cancer. Uplifting eh! You see - just because I dont have cancer anymore, it doesnt mean I dont want to hear about it. I actually think it is a kind of obsession as I have seen pretty much every cancer movie out there and cried through them all.  It is called "The Fault in our Stars" and it made me cry. Actually it made me cry at a moment when no one else was crying and my tears were oddly absent when everyone else was wailing in the theatre. Different things affect different people. The story is about two teenagers who fall in love despite both being terminally ill with cancer. Definitely not a comedy here people though I did laugh quite a few times from the dark humour. It was this one scene where the main character woke up suddenly clutching her chest and is rushed to the hospital in a scene full of panic and fear. That scene got me...really deep down there. I used all my strength to contain the sobs that were building like a tsunami in my chest. I didnt want to cry but my body was doing everything it could to get its way. The reason behind my sudden reaction? I understood what it felt like to suddenly think you are dying and the scene brought it all back to me. My husband and I briefly discussed this over our recent holiday when I brought up some of my fears. When I pressed him slightly about understanding how I felt - he responded with " Kate - I know. I thought I was going to lose you twice last year. I get it." He is rarely so open and honest about his feelings so when he chooses to bear them, I listen. We both had the frights of our lives and the trauma still lives with us. I see it expressed in many different and new ways. I never used to be afraid of flying but ever since my tango with malignancy, I panic when we take off or land. Not to mention any kind of turbulance. One particular moment when my daughter and I were flying over the arctic at nightime shortly after I finished my first round of treatment, we were hit by sudden turbulence. It was scary but when we dropped suddenly and the whole plane was thrown into utter chaos - people flying, dishes crashing, voices screaming. It was terrifying and I remember thinking - How the fuck can I survive cancer, only to be killed in a plane crash a few months later! Luckily we made it out of that one intact but my palms sweat and my breath quickens when I am airborne now. Maybe it is my automatic way of thinking that takes me straight to the worst case scenario without passing Go that is to blame. Like the first night of our holiday a few weeks ago, I was the only one awake and suddenly my heart starting beating wildly and out of beat. I panicked and realised I didnt know what number to call in an emergency and then even still would they get to me in time? Is this normal behavior?

I have actually felt my hysteria and panic rising as the weeks are going by and as I get closer and closer to that next hurdle. My PET scan is in about 4 weeks and I honestly don´t know where those last 6 months have gone. But my body feels it and my crazy cancer behavior has kicked it up a notch. Just last night I started googling survival rates for women with my disease staging. I hadnt done that in a long time and I am more than aware that it is my futile attempt at finding some kind of info to tell myself that I will be okay. With the absense of actual fact, we go for the next best thing - statistics! But what do these numbers mean to me? Are they supposed to comfort or terrify me? And isnt it funny how the odds differ so widely depending on what you are using them for. A 1% chance of winning the lottery is actually quite good but a 10% chance of  getting a disease often makes most people feel slightly relieved that it probably wont happen to them. So what does a 40% chance of survival mean and does that number have anything to do with me really? When I am already part of such a tiny population of patients across the globe, do these numbers hold any bearing on my future? And if my scan was okay 6 months ago does it mean it will be the same again? I guess if I could choose, I would have preferred to be on the better end of 50 here but I  can hear my biostatistician friend telling me that numbers mean nothing especially in my situation. But then how come I can´t let them go? I am always seeking answers to the questions I can´t know. I always remember one of my favorite oncologists, Dr Sunshine, telling me she couldn´t possibly answer my questions because no one knows but the deep confounds of my body and its millions of cells. Yet enquiring minds need to know now!
The sand is almost all at the bottom of the hourglass now and the next judgement day is fast approaching. It actually hit me today when I was sitting down with someone planning out an event and realised that it would be happening the same week. Bam - the cancer stick bitch slapped me back to reality! It wont be long now until all will be revealed as they say. I try to stay positive and feel silly even talking about the bad stuff but like I told a friend tonight - I have learnt to not put my hopes on anything and try to instead just remain indifferent. Indifference means less disappointment regardless of outcome. There is definitely some comfort to take out of sitting on the fence. Because  when the shit hits the fan twice already, you become cautious. Now don´t get me wrong, of course I dont wat to get cancer again - who the hell would? But I am scared. Scared of what could still happen. I feel like I am a cat who has run out of lives and that things can only go one way or the other now. The gray matter in between is gone and there is so much more to lose or win all over again. It is just so damn terrifying and I get tired of being brave. It still shocks me some days when I think about what has become normal and acceptable aspects of my life. I thought about it when I watched that movie tonight and how so much of it was normal. PET scan - check, central port in the chest - check, thoracotomy - check, crazy toxic chemo meds - check check . How did that happen? How did things change so quickly? Now I just need to hang on and wait for that moment when I can finally exhale again. Hmmm... when will that be? In the interim though, I will be okay. I always am. There is much to look forward to tomorrow.

OBB x

Too Old to Dream

“Never allow reality to get in the way of your dreams.” Mark W. Boyer

I just spent a lovely weekend with a dear friend at a spa by the sea. It was definitely something I rarely do (if ever have done) and was of course not my initiative or idea. My friend surprised me months ago with the weekend and thought some rest and relaxation was just what I needed. She could not have been more right especially after the past two weeks I have had. I have not felt good at all. The levels of exhaustion have been so consistently high that I have repeatedly fallen asleep sitting up on the couch after dinner this week. I have awoke most mornings with awful headaches, nausea and a burning in my tummy. Feeling crappy always makes me nervous. It is never just about feeling off...the cause can always been far more sinister. I actually remember thinking this week that if I just put my head down on my desk for a few moments, I would be okay. It has been hard and I am not one to give in very easily to tiredness but I may have met my match. I have genuinely been afraid that this week, I had crossed that irreversible threshhold where I could not recover from and that I had simply pushed too hard and my body would just say no. However I feel slightly renewed after 2 days of only worrying about myself and floating around in the water. I love the water and can still frolick around like a dolphin, doing headstands and synchro moves. Just the like a kid. I also laughed like i hadn´t in months. I laughed till I cried and it was so therapeutic for me. I don´t think I laugh enough. Not anymore. I need to do it more.

So with all this time and space away from regular life, it cleared my head and I was able to really think again. I was watching a documentary about a young girl who was a world ranked surfer and how she came to be who she was (for those who are interested it was called Zero to 100). In the culminating moment where everything came together, I felt emotional and had to hold back the tears. It really brought me back to my own childhood when I was myself a competitor and all those amazing memories returned. I loved that time - the training, the discipline, the competititon, the inspiration. The feeling of touching the wall first, looking up at the time board and pumping your fist in the air in sheer elation. God that feeling was addictive. I took so many positive things away from that time in my life and account some of the bravery and toughness i put into my cancer treatments from that period. I had been taught how to not be afraid and how to work through the pain -  Two traits that i think can be very relevant and applicable in the world of cancer. But after the movie ended, I also felt sadness and questioned where my life was today. Watching that young girl beginning her journey to greatness with the world at her fingertips...she had so much to accomplish and so much time to do it. Where was I in terms of my path to greatness? I would never be back in the pool at that level nor would I have the chance to go to the Olympics. Furthermore my career is okay but I am far from making a global impact. Let´s just say that I won´t be finding a cure for cancer anytime soon.  My body feels so old and weathered that i worry about what little left it has  to give. How do I make my life count and matter? Or are the golden days done? It made me very sad thinking that maybe the best parts were indeed over and that the dreams I had had as a little person were only going to remain dreams. Is this a pre mid life crisis? Is this a realisation of the simple progression of life? It really made me think about how I live my life today and whether it is something I am proud and happy about? Of course I am not thinking of my family within these contemplations because  they are by far my greatest achievement. But this has more to do with me. I asked my friend "Is this it? Are the best parts done for us?"  She echoed my fears in that we both agreed that the time for dreaming was perhaps over now and reality had set in. As we get older, responsibility and practicality become paramount - there are bills to pay, savings plans to make  -  security trumps possibility and every day becomes the same. So tell me the truth - how many of you still dream big? I remember as a little girl, when I was trying to go to sleep at night I would start my own dream in my head about something I wanted to happen that made me happy. I don´t do that anymore and haven´t for a very long time.

I also started thinking about my daughter in that moment and how her entire life was in front of her. She had the power to do whatever she dreamed and try out what she wanted. In a way I envied her and the endless possibilities that lay ahead of her. Everything untouched and untapped. At the same time, I felt so excited for what she would be and whether like me, she would find something she was so passionate about that it made everything else feel irrelevant. The idea of her finding that special something and excelling in it and being able to watch it all unfold for her makes me so excited. And I don´t mean this in the way that I would be living through her so that I could achieve the things I wished that i had but rather being able to witness how fantastic and wonderful her life will be. I had my time and it was simply wonderful. Now it is her turn. Like most parents, I have big dreams for her and I believe in her abilities. She is my daughter so she must be wonderful and talented right? Just thinking about the future, her future makes me happy but also fearful. Suddenly it brings me back to my present reality which still remains so uncertain. How tragic would it be for me to miss out on that moment when she falls in love with something. I want to be there to share in the magic. So support her, love her and be there for those moments, cheering her on in any way I can. The idea of not being there just makes me feel sick. I know I need to think positive and imagine the future the way I want it to be and not give into the fear however it can be hard sometimes when you want to live so very badly. It is hard to avoid the things that threaten that vision from coming to fruition. Maybe I feel that time is going too quickly and that the next scan is coming up again too fast. The fear is returning and the monsters are creeping up out of their lairs. As my friend said today "It is really about being in between life and death and not knowing which way it will go." It is not so often that one is faced with such extremes in one moment where you are prepared for it. Often it comes as a surprise whereas here, I will walk in there and know that things will be one way or the other. It is so finite and so unbelievably terrifying. I tell myself everything will be okay and even feel silly allowing myself to imagine the worst let alone sharing it with all of you. I worry some of you think I am catastrophising and allowing myself to give into the fear. I mean no one has told me I have terminal cancer so why worry about it right now?  Shouldnt i only be thinking positive so that things will indeed go that way? Unfortunately the reality of these intense experiences are anything but simple. It is like being on this boundary between one world and the other without knowing which side you will fall. The lack of control and power over it all is excruciating. It always comes back to the same things. I don´t want anyone to watch me wither away into nothing. I don´t want to die in horrific pain. I don´t want to look in the mirror and not recognise the reflection. I don´t want the people I love to have to say goodbye. To this day, I can´t not cry when I think of getting to a point where i would have to say goodbye to my monkey. The thought is just rips my heart right out of my chest.  I don´t want to have to forfeit my future. I have worked so hard the last few months moving forward and farther away from this nightmare and it has worked. I am not consumed anymore.  I allow myself to think about tomorrow and be able to continue on with a life that isn´t saturated by cancer. So the thought of going back to that awful place is just so horrific and nauseating. It is settled then...nothing will change. The only place I am going is forward to try and figure out some dreams for tomorrow. I am far too young to stop dreaming.

The Elixir of Life

I am starting to remember why I stopped writing for well over a decade. Life got in the way...it always does. When I was a teenager, I wrote pretty much every day and if you were a close friend of mine at that time, you would be familiar with my "poetry phase." I was very good at chanelling my teenage angst and broken hearts into 12 lines. It was always easy for me and I could whip a few poems out in less then an hour. But as things got busier and I got older, the inspiration and ideas stopped. There were a few revivals along the way but they were the product of deep grief and were fleeting. I remember trying to write something for my father´s funeral which had about 200+ people in attendance. I felt so much pressure to write something befitting the man he had been (simply amazing) and I wanted it to be perfect for him and for everyone that was there. I had a bad case of writers block and every draft I started I couldnt finish. It wasn´t until the morning of the funeral that I just picked up a pen and started writing. The words came so naturally and freely and of course it was absolutely perfect in every way. I made him proud that day...I know it. But these days I feel like I am blocked again - bogged down by the stresses of every day life. I don´t have very much down time these days and when I do I am so beyond exhausted that the last thing I can imagine is sitting down to write something worthwhile. It is kinda sad in a way because this blog has been so cathartic for me over the last three years and I don´t want to stop writing. Cancer was just a part of the story and I feel there is still so much to tell. Even today, I sat down in front of the screen and had no idea what I was going to write. I rarely write in a such a haphhazard way. I always used to get a blog idea when I was walking home from dropping my daughter off at daycare every day or when I heard an especially moving piece of music. But these days the ideas and the inspirations are nowhere to be found and I am questioning how I allowed things to get so chaotic again so quickly.

How rich and full is my life if I can´t even find time or space to really think and process what I am feeling? I don´t think finding an answer is easy.  I actually have been thinking alot about my cancer experience, specifically my treatement, the last few weeks. This time of year always stirs up emotions surrounding my two journeys with cancer. Three years ago, I was recovering from a horrendously painful mastectomy and coming to terms with the approaching start date of chemo. It was alot to process and I remember how innocent I still was at that time...being terrified but having no idea what was in store for me. And then this time last year, my chemo had started this past week. Just thinking about these things has brought on immediate nausea. The hospital room that got so warm when the sun shone through the windows, the clear IV bag that looked like water but was a harbinger of something so toxic and horrid, even a bowl of oatmeal brings on stomach flips because it was something i ate at the time. Thinking of being back in the place brings on such dramatic physical and emotional reactions all of sudden. I never really had that many adversions from my time in treatment despite the warnings of not eating your favorite things or listening to your favorite music during chemo but suddenly it is all coming on very strong. When I listen to Ellie Goulding, it takes me back to those rides up the road to the hospital for treatment or a check up. When I look at the nutri shake drinks in the pharmacy while waiting in line, I am reminded of how I survived off them for weeks a time. So many memories of that time that take me back to a dark place. Maybe I am finally starting to process everything in a different way and instead of simply being in " survival" mode, I am starting to reflect on everything in an effort to move forward beyond it. Because I honestly feel so much less like the "cancer girl" as I move further and further away from that last end date of treatment. I am now working almost 100% in my job and getting good results. I rarely visit the Cancer Centre anymore and I almost never talk about cancer in normal conversation these days. Perhaps that is why I am finding it so much harder to write anything of substance in this cancer blog. I am definitely in a state of transition and experiencing something new. It is a tug of war at times - between my weather worn/exhausted cancer self who still can´t find the energy to do it all and the confident, self assured woman who wants it all. My expectations for myself are still a far way off and in trying to do everything, I often collapse. I still feel like i am making up for lost time and that I need to try and fit everything in that I missed out on. I do find that the one area that is suffering the most right now is my ability to socialise. I just have nothing left to do it these days and sincerely hope everyone understands how hard this balance is to maintain right now and that i will come back to you all soon. Please don´t forget that even though I look great and appear to be doing it all, I am a long way from 100% inside. My clothing hides the morphine patch on my arm that I wear to control the daily pain I feel and the smile hides the sheer exhaustion I am feeling every day. And this anger...I don´t quite know where it is coming from but I feel it alot. I also feel more out of place in many situations and just can´t be " the outgoing and happy" person I used to be. That is something I really notice these days...maybe I am just never going to be the same person I was before after living through these experiences.

So as most of you can see, my life is definitely on its way to normal with a few things left to work out. But just as the medicine I take daily and the scars I see everytime i get out of the shower remind me of the journey I have been on, I get these jolts that take me back to what has become such a normal part of my life that in a way has made me forget it was ever any other way. Just yesterday I was telling someone about our summer plans and then suddenly I realised that my next  scan was not that far away. I have worked so hard the last few months to establish this life that was no longer interrupted by cancer and now it is just around the corner again. Having had a taste of "normal", I just don´t want to go back there again and of course I never forget about the what ifs. I taunt myself with the fear of things not going the right way and what if this dark passenger is back. It is just so damn terrifying to fathom after having worked so hard to forget. Because I have no idea and no control over what is happening beneath my skin and it is so hard not to imagine that that pain, that nausea or that loss of appetite is from a monster lurking in the dark corners. I don´t think i would even go to my doctor right now if I felt like something was up because I don´t want to interrupt this happy holiday away from illness. Do I sound crazy or reckless saying that? It is kinda of like wanting to stay at the party even though you know your parents wanted you home 2 hours ago. Instead of checking your phone for some threatening message, you ignore reality and just continue partying! I feel like that. I just want things to keep going the way they are where i can imagine the next promotion at work, where I can think about what kind of woman my daughter will become and where I can  dream of a life where I can gracefully age into an old, wrinkly but happy woman with her equally wrinkly husband beside her. Because in all honesty I didn´t allow myself to think about these things this time last year - everything was shrouded in fear and just thinking about these things would make me cry. It is like I have tasted that elixir of life and I don´t want to go back. I know how important every minute and every opportunity is.

Just like the character Emily from Thornton Wilder´s play " Our Town" who says:
"Good-by, Good-by, world. Good-by, Grover´s Corners...Mama and Papa. Good-by to clock ticking...and Mama´s sunflowers. And food and coffee. And new-ironed dresses and hot baths...and sleeping and waking up. Oh, earth, you´re too wonderful for anybody to realise you. "

I realise how wonderful life is and I don´t want to lose my firm grip on it. Opening the curtains to see a beautifully clear sunny day; Coming in to kiss my sleeping daughter goodnight and whispering in her ear how much I love her; Thick fluffy pancakes with real syrup; My husband surprising me just because; Surprise parcels in the mail; Hearing from an old friend; Thinking of memories that warm your soul; Knowing you have tomorrow and the next day, and the next. These are just some of things that make me thankful to be here and have a chance at life again. So please Mr Cancer...stay away.

OBB x

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