Sunday, January 12, 2014
I wish I had a Crystal Ball
“After you find out all the things that can go wrong, your life becomes less about living and more about waiting.” Chuck Palahniuk, Choke
It is the second Sunday in a row that I have spent feeling awful and in bed most of the time. I felt alot like I did during chemo - the ache through my entire body, every tiny little movement and action feeling like such hard work, having no energy at all (i.e: having to sit down in the shower) and just feeling like absolute crap. Both days - I have slept hours throughout the day and had the most awful dreams. Mind and body are clearly out of sync. The thing is that I am not ill nor am I recovering from some huge night out (god I wish) - I am simply reacting to doing too much the day and week before. Honestly I find it so unbelievably depressing how cruel and punishing my body can be to me. It´s like when the pot starts boiling and the bubbles get closer and closer to the edge, you run to catch it to turn the temp down but instead everything erupts down the sides and everywhere. That is an accurate image of the way my body reacts when I do too much. The week was insane - first week of working 3 days a week, 2 huge birthday parties to host and the whole scan looming in the background. I know I pushed myself and I had this cold that was teetering on the edge of becoming full blown flu. It was just too much for me but of course I didn´t listen to my limits or to my body and I just pushed and pushed and pushed. Then BAM! Sunday it all comes crashing down and my body forces me to actually take the rest it needs via bed hostage tactics. I never experienced anything like this after the first cancer round so I can see how much more all of this has affected me. Every day is a new learning lesson for me and my newfound limitations. But god does it make me so crazy angry - that my 34 year old body (yes I had a birthday this week) can´t make it through a busy day with no rest without completely collapsing the next day and refusing to work. It isn´t normal but then again what the hell is normal about this life I have been living for nearly three years now.
I can´t believe cancer has been my dark passenger for so long. You almost start forgetting what life can be like without it. This time, three years ago, I was in pain, I knew something wasn´t right but I didn´t know how wrong it was. And now I feel like I am staring down a road with two paths and not knowing which one I will take. I want things to be okay because I just don´t know if I could go through more of this. I don´t know if my body could take more and I never thought I could or would feel like that. But do you want to hear a confession? I am also scared of things being alright too. Thinking of the results coming back clear makes me feel weird and unsettled. Cancer has been such a huge (albeit totally shitty) part of my life for a long time. In some screwed up way, it becomes a part of you and your identity. I am the girl who got breast cancer twice before she turned 35. By losing the cancer piece, you need to move on from the whole experience as you tick off each clear scan and it can be unsettling moving away from the safety net you can get from cancer. I don´t know if I am making total sense here (cancer - a safet net? Say what girl?) but maybe those of you who have had cancer before will get it. I of course never ever wanted to have cancer, but once you have it, the thought of having to just get on with everything again can be quite terrifying. Who am I if I am not the girl with cancer? Like this blog - would my normal life really be interesting enough for you all to read? So I feel all messed up about it all. I remember in October 2012, when my husband and I were waiting for the results of my biopsy following a positive pet result. We were so prepared for the cancer to be back and had made plans and strategies - so when we got news that the biopsy was negative (the biopsy was in fact wrong as they had missed the tumour by mm but hey thats just details), we felt deflated, depressed and so utterly lost. I guess that is kinda how I feel right now - lost. There is so much riding on this scan and now that it is nearly a day away, I still feel so unprepared. My doctor is being so positive though, which he never used to be, so I am trying to join him on that train of thought. When I am trying to fall asleep or wake up in the middle of the night, all I think about is that day we come in for the results. Any cancer patient or survivor can tell you how terrible that feeling is - the nausea, your heart beating a mile a minute, the analysis of everything around you. I think of how I will feel that day and what his face will look like when he walks. Will he smile in that happy everything is okay way or in the "you are going to die" pathetic way? How will he say hello? Will there be smalltalk? Dr Sunshine tells me that I am always trying to find answers to questions and things that are impossible to know. Like I expect some crystal ball to be sitting in the oncology ward holding all the answers to everything. But like Tuesday when I lie there as the machine scans every inch of my body and like that day I go to hear my judgement, I will have no idea what is or will happen until it actually does. Acknowledging this lack of control clearly doesnt make it any easier but who said any of this was easy.
I had a dream last night that I was being chased by something I couldn´t quite make out. My chest was pounding, my legs were tired and fear rippled through my body. I just kept running because even though I couldn´t see it, I knew it was bad. I kept trying to will myself to wake up to end the dream because I was so scared. You ever have those kind of dreams? But I couldn´t stop the dream and it kept going and going. Kinda sounds like the last year of my life. However the important part was that as awful as the dream was, I did wake up and it did end. And I was okay. So regardless of what happens on Tuesday, I will tell myself what my husband wrote in my birthday card this year:
"Everything will be okay in the end. If it´s not okay, it´s not the end."
Love,
A slightly older and wiser OBB
PS: Thank you for all the emails, calls, packages, cards and messages from all of you from around the world. Birthdays are ever so special to me and so many of you joined in to celebrate it with me. I am grateful for all the love I have in my life. This year will be my best yet!
Thursday, January 2, 2014
2014 Will Be Cancer Free
“For last year's words belong to last year's language
And next year's words await another voice.
And to make an end is to make a beginning."
T.S. Eliot
First of all - Happy New Year everyone. I hope you all had a nice and restful holiday and are greeting the new year with open arms and extra big smiles. I love Christmas excessively and always find that it all goes by far too quickly and suddenly we are taking out the boxes again to put all the glittery, sparkly beautiful things away. I always feel sad that first weekend after New Years when everything disappears and we have nothing but an extra long cold and dark month ahead of us. But of course I had my little monkey´s fourth birthday yesterday too which was simply wonderful. I put everything I had into the day to ensure it was extra special for her. I feel that with everything I have been through, every moment matters and I want to make days like this absolutely perfect and it was. I can´t believe I have a four year old already. I did alot of thinking back to that day when she became a tiny little person in my arms and I embraced motherhood so fully and completely. Little did I know what would be awaiting me so soon afterwards. To be honest - I find it so hard to see her grow up so fast. She is my baby and most likely will be my only baby and I want her to stay little forever. I think she is far more perceptive then I give her credit because when I remarked how big she was getting yesterday, she said to me that I would get sad when she was bigger. I smiled and reassurred that I did want her to grow up but that she would always be my baby to which she agreed. I am also celebrating my own birthday next week which I feel priviledged to be doing as turning 34 is an honour and not a drag. I probably would have freaked about approaching my mid to late 30s had I not been smacked by the cancer stick because as I know - nothing is owed to you and growing old is not a right. So I will be fully embracing my saggy knees and crows feet thank you very much.
In other news - I bit the bullet and overcame my fear of planning for the future and (through some gentle prodding from my husband) booked tickets to Canada at the end of the month. It was crazy and I was hyperventilating as the ticket confirmation page was loading. I had been humming and hawing over it for over a month and finding reasons to not book. Of course the trip sits smack dab in the middle of this scanning limbo and as a result stirs up lots of emotions. It also reminded me of the last two trips I had to cancel because of "unforeseen medical emergencies" and I most definitely didn´t want to do it again. But I have decided that I will go to Canada regardless of what happens unless a doctor tells me otherwise. I need this - it has been over two years since I was there so I am well overdue and i think being with my family will be therapeutic. So monkey and me will take to the friendly skies and hopefully survive the trip. I have been growing increasingly anxious being out in public with her these days when I feel so fatigued, dizzy and just plain out of it. I get so scared that I will collapse and she will be alone, scared and not know what to do. I never worried about this stuff until the whole wedding debacle in September. Losing control and consciousness in front of lots of people is absolutely terrifying and I can´t imagine how much worse that situation would have been had she been there too. I guess I have more anxiety issues to work through then I thought. Hello therapy!
And finally...we are in January and my scan is now less then 2 weeks away. I don´t how the time went by so fast. I remember asking my doctor for a 5 month break as a favour because I desperately needed a long break from cancer but now...here we are again ready to embark on the cancer merry go round. To be totally honest (because that is what this blog is all about) - I have no gut feel about how this is going to go at all. Maybe it is my way of protecting myself this time or maybe it is the result of having been through so many of these, the waiting times, the expectations and the disapointment. I genuinely have no idea but of course I want the outcome to be good. I have been telling myself that I look much too good to be ill again as have many other people but then I played games with myself today by studying pictures of me and monkey as a baby, looking wonderfully healthy and serene despite the fact a deadly cancer was growing aggressively in my body. It is hard to deal with all of this sometimes and what a mind fuck it can be! But all will be known very soon and hopefully all that poison and radiation held up its end of the bargain and killed everything. It does feel like a judgement day of sorts due to fact that there is just so much riding on this. I don´t want to hear more bad news and I dont want anyone to dig around in my body anymore. There is nothing left to take and my life needs no more interruptions. So you can be assured that I will keep you all updated on the scan and what we hope will be big scale celebrations in Canada afterwards! And there will be champagne people...there will be champagne.
Wishing you all well in 2014 and hope you make this year your best yet. I am hoping this will be mine.
OBB
And next year's words await another voice.
And to make an end is to make a beginning."
T.S. Eliot
First of all - Happy New Year everyone. I hope you all had a nice and restful holiday and are greeting the new year with open arms and extra big smiles. I love Christmas excessively and always find that it all goes by far too quickly and suddenly we are taking out the boxes again to put all the glittery, sparkly beautiful things away. I always feel sad that first weekend after New Years when everything disappears and we have nothing but an extra long cold and dark month ahead of us. But of course I had my little monkey´s fourth birthday yesterday too which was simply wonderful. I put everything I had into the day to ensure it was extra special for her. I feel that with everything I have been through, every moment matters and I want to make days like this absolutely perfect and it was. I can´t believe I have a four year old already. I did alot of thinking back to that day when she became a tiny little person in my arms and I embraced motherhood so fully and completely. Little did I know what would be awaiting me so soon afterwards. To be honest - I find it so hard to see her grow up so fast. She is my baby and most likely will be my only baby and I want her to stay little forever. I think she is far more perceptive then I give her credit because when I remarked how big she was getting yesterday, she said to me that I would get sad when she was bigger. I smiled and reassurred that I did want her to grow up but that she would always be my baby to which she agreed. I am also celebrating my own birthday next week which I feel priviledged to be doing as turning 34 is an honour and not a drag. I probably would have freaked about approaching my mid to late 30s had I not been smacked by the cancer stick because as I know - nothing is owed to you and growing old is not a right. So I will be fully embracing my saggy knees and crows feet thank you very much.
In other news - I bit the bullet and overcame my fear of planning for the future and (through some gentle prodding from my husband) booked tickets to Canada at the end of the month. It was crazy and I was hyperventilating as the ticket confirmation page was loading. I had been humming and hawing over it for over a month and finding reasons to not book. Of course the trip sits smack dab in the middle of this scanning limbo and as a result stirs up lots of emotions. It also reminded me of the last two trips I had to cancel because of "unforeseen medical emergencies" and I most definitely didn´t want to do it again. But I have decided that I will go to Canada regardless of what happens unless a doctor tells me otherwise. I need this - it has been over two years since I was there so I am well overdue and i think being with my family will be therapeutic. So monkey and me will take to the friendly skies and hopefully survive the trip. I have been growing increasingly anxious being out in public with her these days when I feel so fatigued, dizzy and just plain out of it. I get so scared that I will collapse and she will be alone, scared and not know what to do. I never worried about this stuff until the whole wedding debacle in September. Losing control and consciousness in front of lots of people is absolutely terrifying and I can´t imagine how much worse that situation would have been had she been there too. I guess I have more anxiety issues to work through then I thought. Hello therapy!
And finally...we are in January and my scan is now less then 2 weeks away. I don´t how the time went by so fast. I remember asking my doctor for a 5 month break as a favour because I desperately needed a long break from cancer but now...here we are again ready to embark on the cancer merry go round. To be totally honest (because that is what this blog is all about) - I have no gut feel about how this is going to go at all. Maybe it is my way of protecting myself this time or maybe it is the result of having been through so many of these, the waiting times, the expectations and the disapointment. I genuinely have no idea but of course I want the outcome to be good. I have been telling myself that I look much too good to be ill again as have many other people but then I played games with myself today by studying pictures of me and monkey as a baby, looking wonderfully healthy and serene despite the fact a deadly cancer was growing aggressively in my body. It is hard to deal with all of this sometimes and what a mind fuck it can be! But all will be known very soon and hopefully all that poison and radiation held up its end of the bargain and killed everything. It does feel like a judgement day of sorts due to fact that there is just so much riding on this. I don´t want to hear more bad news and I dont want anyone to dig around in my body anymore. There is nothing left to take and my life needs no more interruptions. So you can be assured that I will keep you all updated on the scan and what we hope will be big scale celebrations in Canada afterwards! And there will be champagne people...there will be champagne.
Wishing you all well in 2014 and hope you make this year your best yet. I am hoping this will be mine.
OBB
Wednesday, December 11, 2013
Chemo Brain...Uncovered
Hello again world,
Here we are nearly two weeks away from Christmas and almost 3 months since I finished treatment. Both have creeped up on me unsuspectingly and it feels like time is truly flying by. I am still working and it is good but also very challenging. I am discovering that - thank god I still have a brain that has good ideas and can perform but I am also seeing that my newly established limitations are frustrating. I know I am not the same girl I was in my 20s who loved working long hours and getting to the office first despite having been out partying til 4am on a Tuesday night! But before this latest round, I had more endurance and could just do more. Of course my priorities changed after having my monkey but I remained driven and motivated. However last week, I worked two days in a row and was so tired in the evening that my husband found me sitting upright in bed with my face firmly planted in my Ipad. I never pass out ever when I go to bed so it was a sign that the ol´body was dealing with a new set of challenges and it was struggling. I am also noticing some symptoms that can be classified as "chemo brain" - a condition that has been debated alot in the cancer world. Some people (doctors included) don´t agree that it actually exists and that it is more psychosomatic then actually a physical condition caused by the chemicals. You know us cancer peeps - anything to milk the sympathy card longer! (just kidding). But in all seriousness - I am feeling more and more of these so-called afflictions.
The Mayo Clinic defines chemo brain as:
Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.
Let´s see...
I used to be a supernova in the morning who loved to get up early to ensure I had time for sun salutations, my multistep hair straightening process and getting my child looking "picture perfect." However these days, I am struggling with the daily grind and heavily depend on Disney Junior to buy myself enough time to cram everything in and I take more then double the time to do even less then I did previously. And the stress and frenzied nature which I do everything does nothing for my irregular heart beats! Like a chicken with its head cut off people.
frustration.com - I have prided myself on my consistent mood and high level of patience pretty much my whole life. That is what works with my husband and I - we balance each other in terms of our moods. I rarely have changes in how I act, feel and react. I am not an emotional desert but I dont get as emotional and irritated and it definitely comes in handy when dealing with a toddler. However these days I feel myself wanting to scream over the little things and get angry when I fubble with something or can´t get the frickin´carseat sorted. It is a new feeling for me and I don´t like one bit.
Brain freeze: We all have moments when we forget things - it happens to everyone. Unfortunately my frequency of forgetfulness has increased dramatically as of late. If I had a kronor for every time I said "hang on a minute, I can´t remember that name, thing, place....but it will come back to me in the next 30-45seconds" - I would be sorta rich in a coin kind of way. Sometimes I find those missing words but other times they seem to be on their way to neverland and never come back. It makes me anxious as I don´t know if my mental sharpness and quick witted nature will ever be the same or will I forecer coast along on slow mo?
Let´s talk about Focus: Okay I have never been someone who accelerated at math or complex problem solving nor do I like to do things I find boring. Who does really? But these days my avoidance of doing difficult things that are unpleasant is even worse. I delay everything because it is just so bloody hard. And I even delay things I want to do like sending an email. returning a phone call or finishing a project. The intent is there and I feel so much guilt over not doing it but I still don´t do it. I only have the capacity to do one thing a day really and sometimes I don´t even get through that. So no - it is not personal. :)
Fatigue: I am not sure this actually technically fits into the "chemo brain" box as it it more of a physical affliction but I feel that my fatigue contributes greatly to the things I listed above so definitely worth a mention. Fatigue makes all of these so much worse. And boy am I dealing with fatigue levels that I have never ever known (and I was a swimmer for years who woke up at 4:45am so I know tired). I wake up exhausted and sore no matter how early I went to bed. I need to lie down and rest every afternoon or else I fall apart mid evening to the point of collapsing. Seriously - forget Sunday mass, naps have become a devout practice that cannot be missed. And when I get tired things hurt...alot. A few weeks ago, I attended my work Christmas conference and party and suffered from debilating chest pains for the next week just from a lack of sleep. Honestly where did the jagerbomb girl go that we all know and loved? Oh yes that is right - she got cancer! And by the time I have done everything i need to do in the evening, I hobble around like an old woman with aching joints from the temporary arthritis chemo gave me. It is hard not to get pissed off about it all and tell the silver lining to fuck off! I want my old self back stat Roger!
So following the latest round in the ring with the C- monster, I am now a firm believer in the existence of "chemo brain" and all the associated issues that come with it. I feel for all of those who have experienced it and for those who are still wading the deep waters of it. Doctors still don´t know very much about it and research has only just dipped its toes in the water regarding it. I hope we find out more and discover new ways to treat it and more importantly properly recognise it. For those of who have been through it, what are your experiences?
Hope everyone is enjoying the holiday season. Someone please have an eggnog for me!
OBB xxx
Here we are nearly two weeks away from Christmas and almost 3 months since I finished treatment. Both have creeped up on me unsuspectingly and it feels like time is truly flying by. I am still working and it is good but also very challenging. I am discovering that - thank god I still have a brain that has good ideas and can perform but I am also seeing that my newly established limitations are frustrating. I know I am not the same girl I was in my 20s who loved working long hours and getting to the office first despite having been out partying til 4am on a Tuesday night! But before this latest round, I had more endurance and could just do more. Of course my priorities changed after having my monkey but I remained driven and motivated. However last week, I worked two days in a row and was so tired in the evening that my husband found me sitting upright in bed with my face firmly planted in my Ipad. I never pass out ever when I go to bed so it was a sign that the ol´body was dealing with a new set of challenges and it was struggling. I am also noticing some symptoms that can be classified as "chemo brain" - a condition that has been debated alot in the cancer world. Some people (doctors included) don´t agree that it actually exists and that it is more psychosomatic then actually a physical condition caused by the chemicals. You know us cancer peeps - anything to milk the sympathy card longer! (just kidding). But in all seriousness - I am feeling more and more of these so-called afflictions.
The Mayo Clinic defines chemo brain as:
Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.
Let´s see...
I used to be a supernova in the morning who loved to get up early to ensure I had time for sun salutations, my multistep hair straightening process and getting my child looking "picture perfect." However these days, I am struggling with the daily grind and heavily depend on Disney Junior to buy myself enough time to cram everything in and I take more then double the time to do even less then I did previously. And the stress and frenzied nature which I do everything does nothing for my irregular heart beats! Like a chicken with its head cut off people.
frustration.com - I have prided myself on my consistent mood and high level of patience pretty much my whole life. That is what works with my husband and I - we balance each other in terms of our moods. I rarely have changes in how I act, feel and react. I am not an emotional desert but I dont get as emotional and irritated and it definitely comes in handy when dealing with a toddler. However these days I feel myself wanting to scream over the little things and get angry when I fubble with something or can´t get the frickin´carseat sorted. It is a new feeling for me and I don´t like one bit.
Brain freeze: We all have moments when we forget things - it happens to everyone. Unfortunately my frequency of forgetfulness has increased dramatically as of late. If I had a kronor for every time I said "hang on a minute, I can´t remember that name, thing, place....but it will come back to me in the next 30-45seconds" - I would be sorta rich in a coin kind of way. Sometimes I find those missing words but other times they seem to be on their way to neverland and never come back. It makes me anxious as I don´t know if my mental sharpness and quick witted nature will ever be the same or will I forecer coast along on slow mo?
Let´s talk about Focus: Okay I have never been someone who accelerated at math or complex problem solving nor do I like to do things I find boring. Who does really? But these days my avoidance of doing difficult things that are unpleasant is even worse. I delay everything because it is just so bloody hard. And I even delay things I want to do like sending an email. returning a phone call or finishing a project. The intent is there and I feel so much guilt over not doing it but I still don´t do it. I only have the capacity to do one thing a day really and sometimes I don´t even get through that. So no - it is not personal. :)
Fatigue: I am not sure this actually technically fits into the "chemo brain" box as it it more of a physical affliction but I feel that my fatigue contributes greatly to the things I listed above so definitely worth a mention. Fatigue makes all of these so much worse. And boy am I dealing with fatigue levels that I have never ever known (and I was a swimmer for years who woke up at 4:45am so I know tired). I wake up exhausted and sore no matter how early I went to bed. I need to lie down and rest every afternoon or else I fall apart mid evening to the point of collapsing. Seriously - forget Sunday mass, naps have become a devout practice that cannot be missed. And when I get tired things hurt...alot. A few weeks ago, I attended my work Christmas conference and party and suffered from debilating chest pains for the next week just from a lack of sleep. Honestly where did the jagerbomb girl go that we all know and loved? Oh yes that is right - she got cancer! And by the time I have done everything i need to do in the evening, I hobble around like an old woman with aching joints from the temporary arthritis chemo gave me. It is hard not to get pissed off about it all and tell the silver lining to fuck off! I want my old self back stat Roger!
So following the latest round in the ring with the C- monster, I am now a firm believer in the existence of "chemo brain" and all the associated issues that come with it. I feel for all of those who have experienced it and for those who are still wading the deep waters of it. Doctors still don´t know very much about it and research has only just dipped its toes in the water regarding it. I hope we find out more and discover new ways to treat it and more importantly properly recognise it. For those of who have been through it, what are your experiences?
Hope everyone is enjoying the holiday season. Someone please have an eggnog for me!
OBB xxx
Thursday, November 28, 2013
Requesting Normal
It has been nearly a month since my words graced these pages and I don´t quite know what has happened. Life of course got in the way again but I also just haven´t been able to write. Nothing came to me, no inspiration, no clever ideas or even dramatic events to recount. I have told you all many times before that i can never just start writing without some kind of idea or thought to work from - the entries never end up being published as they just never quite feel right. But today i am pushing through the wall to try and get something out there so you all know how things are going. I most definitely havent been sitting at home for the last four weeks twiddling my thumbs - quite the opposite really.
So against doctors advice, I went back to work a few weeks ago. I know it sounds crazy especially to people who have had cancer and understand the toll this disease and subsequent treatment takes on you. I do get irritated when people tell me that going back to work is a good thing and that why I shouldnt I do it - it can´t be that difficult. Rule one of cancer - Don´t talk about things you know nothing about! Trying to get back to a normal existense after cancer, once, is tough, but twice is hell and I have definitely underestimated my own self this time. It was important to me to start my life again hence wanting to work again and I knew my body and mind were far from ready but then I felt that I probably would never be ready so I needed to just leap. There is also this inate restlessness and frustration within me and an obsessive desire to get things going again. My life has been on stop start mode for years now and I feel like I can´t wait around anymore. None of this is what I planned for myself and there are so many things I wish were different but can´t change. I especially struggle with my career which was always incredibly important to me. It has been stagnant and on hold for four years now at a time when I should be at my prime. It is such a hard pill to swallow as I watch everyone sprint past me while I keep getting pushed further back. And what I realised after my first day back is that I may never be the same again. This latest round of treatment completely annihilated me and things I took for granted before are challenging. I get frustrated over minute things, I struggle with multitasking and completing tasks under time constraints, I have to lie down and sleep every afternoon religiously or I literally collapse from exhaustion in the evening and I worry about everything. I also feel like things are different for me at work - now everyone seems to know about me. I have lost my anonymity - my sense of being normal. The reactions differ dramatically from person to person - some tear up when they talk to me and hear about my struggles. They are often people who have young kids too, mothers, or people who have experienced cancer through a loved one. Then they are the others who avoid me in the lunchroom or the hallway - people I used to share a joke with and chat with in passing. It is hard to see them knowingly run the other way but I also know it is up to me how I allow people to see and define me. I know I scare them because of what I represent - someone who shouldn´t have had this happen to her. If I want to be the cancer girl then so be it but if I want to someone else I also can - it is up to me. But sometimes it is so hard to play the normal card because it often involves pretending that everything is okay when it isn´t. And god do I feel so much self doubt and vulnerability. I question my ability to do a good job, to handle stress, to speak in another language, to be valued for the work I do and to not be seen as a burden to anyone especially my employer. Right now I feel like an albatross around their neck - I can´t give what I want to and it feels like such a long way back up this mountain that I am standing in front of. I wish every single day that i could wake up tomorrow and be normal again - no morphine patch permanently fixed on my arm, no handfull of pills I swallow every evening, no flat chest covered in scars that make me feel like less of a woman, no feelings of such exhaustion that I cant take another step and no fear of the future and what other struggles lie ahead. I hate to sound like such a depressed Debbie here (I hate whingers!) but this is exactly how I feel. I hope things get easier - everyone forgets over time including myself and I hope, like my scars, all of these things will fade until they eventually disappear forever. As I always say - we can always hope.
Aside from my new venture back into the working world, I am still struggling with heart issues and visited the cardio doc last week. Several tests later, he proclaimed there would be no fast solutions to my problems and that this was most likely caused by my misshap with the Port incident of 2013. The heart is wired electronically in such an intricate way that any little scarring (in my case caused by a little wire that fell into the heart) will cause problems. None of it is life threatening but boy is it frickin´annoying and given the fact I have been seriously ill twice and my father and grandmother suddenly died from heart problems, I cannot just stay calm when my heart is acting wonky. It just feels like more bad luck on top of a whole mountain full of it! We will do more tests in a few weeks to determine the extent of it and act accordingly. As you can imagine - I have been struggling with anger issues as of late. And the clock is ticking on the PET which is now just a little over a month away. I feel like the last few months post treatment have been anything but restful with all the crap that has happened.
"Dear God, make me a bird. So I could fly far. Far far away from here."
Perhaps somewhere preferably with a beach, 24 hour on call massage therapist and unlimited amounts of jelly beans. :)
Love,
OBB
So against doctors advice, I went back to work a few weeks ago. I know it sounds crazy especially to people who have had cancer and understand the toll this disease and subsequent treatment takes on you. I do get irritated when people tell me that going back to work is a good thing and that why I shouldnt I do it - it can´t be that difficult. Rule one of cancer - Don´t talk about things you know nothing about! Trying to get back to a normal existense after cancer, once, is tough, but twice is hell and I have definitely underestimated my own self this time. It was important to me to start my life again hence wanting to work again and I knew my body and mind were far from ready but then I felt that I probably would never be ready so I needed to just leap. There is also this inate restlessness and frustration within me and an obsessive desire to get things going again. My life has been on stop start mode for years now and I feel like I can´t wait around anymore. None of this is what I planned for myself and there are so many things I wish were different but can´t change. I especially struggle with my career which was always incredibly important to me. It has been stagnant and on hold for four years now at a time when I should be at my prime. It is such a hard pill to swallow as I watch everyone sprint past me while I keep getting pushed further back. And what I realised after my first day back is that I may never be the same again. This latest round of treatment completely annihilated me and things I took for granted before are challenging. I get frustrated over minute things, I struggle with multitasking and completing tasks under time constraints, I have to lie down and sleep every afternoon religiously or I literally collapse from exhaustion in the evening and I worry about everything. I also feel like things are different for me at work - now everyone seems to know about me. I have lost my anonymity - my sense of being normal. The reactions differ dramatically from person to person - some tear up when they talk to me and hear about my struggles. They are often people who have young kids too, mothers, or people who have experienced cancer through a loved one. Then they are the others who avoid me in the lunchroom or the hallway - people I used to share a joke with and chat with in passing. It is hard to see them knowingly run the other way but I also know it is up to me how I allow people to see and define me. I know I scare them because of what I represent - someone who shouldn´t have had this happen to her. If I want to be the cancer girl then so be it but if I want to someone else I also can - it is up to me. But sometimes it is so hard to play the normal card because it often involves pretending that everything is okay when it isn´t. And god do I feel so much self doubt and vulnerability. I question my ability to do a good job, to handle stress, to speak in another language, to be valued for the work I do and to not be seen as a burden to anyone especially my employer. Right now I feel like an albatross around their neck - I can´t give what I want to and it feels like such a long way back up this mountain that I am standing in front of. I wish every single day that i could wake up tomorrow and be normal again - no morphine patch permanently fixed on my arm, no handfull of pills I swallow every evening, no flat chest covered in scars that make me feel like less of a woman, no feelings of such exhaustion that I cant take another step and no fear of the future and what other struggles lie ahead. I hate to sound like such a depressed Debbie here (I hate whingers!) but this is exactly how I feel. I hope things get easier - everyone forgets over time including myself and I hope, like my scars, all of these things will fade until they eventually disappear forever. As I always say - we can always hope.
Aside from my new venture back into the working world, I am still struggling with heart issues and visited the cardio doc last week. Several tests later, he proclaimed there would be no fast solutions to my problems and that this was most likely caused by my misshap with the Port incident of 2013. The heart is wired electronically in such an intricate way that any little scarring (in my case caused by a little wire that fell into the heart) will cause problems. None of it is life threatening but boy is it frickin´annoying and given the fact I have been seriously ill twice and my father and grandmother suddenly died from heart problems, I cannot just stay calm when my heart is acting wonky. It just feels like more bad luck on top of a whole mountain full of it! We will do more tests in a few weeks to determine the extent of it and act accordingly. As you can imagine - I have been struggling with anger issues as of late. And the clock is ticking on the PET which is now just a little over a month away. I feel like the last few months post treatment have been anything but restful with all the crap that has happened.
"Dear God, make me a bird. So I could fly far. Far far away from here."
Perhaps somewhere preferably with a beach, 24 hour on call massage therapist and unlimited amounts of jelly beans. :)
Love,
OBB
Tuesday, November 12, 2013
Six Digits Later - Part 2
Hi Again,
Just to let you know that I made a few revisions to Part 1 -please check it out again.
So Part 2 of my six digit celebration involves hearing what some special friends have to say about the past few years. It was hard to decide who to ask to spill their heart as there have been so many amazing people supporting me on this tough road. I decided to look at the three main parts of my life - the early years, the London years and my present Norsk life. I asked three girlfriends to write about how my illness has impacted our friendship, what more they learnt about cancer and any advice they had for others. What came out of this exercise was beautiful emotion, touching memories and a whole lot of love. I wish I could have included little snippets from the thousands of messages I have received via this blog over the past few years but I will save that for the book. :)
"I think if I've learned anything about friendship, it's to hang in, stay connected, fight for them, and let them fight for you. Don't walk away, don't be distracted, don't be too busy or tired, don't take them for granted. Friends are part of the glue that holds life and faith together. Powerful stuff." Jon Katz
My life is so rich because of the people that are in it and I appreciate these three ladies putting their emotions on their sleeves. Not everyone is as comfortable putting it all out there so thank you.
1) The Montreal Years by Lara
Kate and I met as 4 year olds in a local preschool program. For those blog readers out there that don’t know Kate personally, you should know that she has an amazing sense of humor, and to this day, can make me laugh until I cry. One of our favorite things to do when we were young was to stage very dramatic, fictional skits. And looking back, some of the scenarios we came up with were downright bizarre. We invented a very intricate storyline about two old women named “Milly and Tilly” (played by us) who were essentially cranky old biddies who made fun of one another and screamed off the porch at (imaginary) neighborhood kids. We coerced my two little brothers to play their unfortunate husbands, and would rope them into what we thought was our hilarious game by barking orders at them to “make us lemonade” etc. To our parents’ credit, this somehow did not alarm them.
Kate and I are very different. By 12 years old, Kate was close to 6 feet tall, and I was about 4 ft. 5. She has older siblings, and knew the “ways of the world” before I did. She had already fallen in love by the time I was getting fitted for my headgear. And I am a land mammal, while Kate on the other hand was born to be in the water. She was a nationally ranked swimmer and incredibly strong and fast in the water. I never heard her complain about the long hours at the pool, the early wake ups in the middle of winter, and having to juggle schoolwork with swimming. (She did however have a way of getting people to massage her back and shoulders - often.) Kate was focused and dedicated, but humble. She never took herself too seriously to have fun, laugh, and celebrate her friends’ triumphs. We had so much fun together, and there are so many memories … of food fights, bike rides, listening to music in her room, and dreaming together about what life had in store for us. Neither of us could have imagined that she would get cancer at 31.
I was planning a one-year move to Sweden when I heard from Kate in early 2011 that she had been diagnosed with breast cancer. Let me just pause here to emphasize that cancer sucks, and I hate everything about it. But in a way, Kate’s diagnosis brought us closer together. During Kate’s first round of treatment, I was only a bus ride away from her after years of living on separate sides of the country or world. It turns out that all the memories had been waiting there like little seeds in the ground and before long, a new friendship had grown out of the old one. I am so grateful for that.
When I spend time with Kate, I am aware of every version of her, past and present. The wide-eyed child, the comedian, the poet, the romantic, the fierce competitor, the intelligent woman, the ambitious professional, the adventurous spirit, the lover of life, the mother, the wife. And always, the loyal friend. What I have learned from being Kate’s friend throughout two cancer diagnoses and rounds of treatment is that cancer does not define a person. Cancer does not sum up who Kate is (it couldn’t if it tried!) even though it has done everything in its power to take over. I have learned that thoughtful questions are often more supportive than advice. I have learned how to hold hope when sitting with a friend in the dark places. I’ve learned that there is such a thing as a badly timed joke, but that laughter is ALWAYS good. And I think our make believe game about being old women was just practice for the day when we’ll sit on a porch somewhere with white hair and lined faces, and make each other laugh.
Just to let you know that I made a few revisions to Part 1 -please check it out again.
So Part 2 of my six digit celebration involves hearing what some special friends have to say about the past few years. It was hard to decide who to ask to spill their heart as there have been so many amazing people supporting me on this tough road. I decided to look at the three main parts of my life - the early years, the London years and my present Norsk life. I asked three girlfriends to write about how my illness has impacted our friendship, what more they learnt about cancer and any advice they had for others. What came out of this exercise was beautiful emotion, touching memories and a whole lot of love. I wish I could have included little snippets from the thousands of messages I have received via this blog over the past few years but I will save that for the book. :)
"I think if I've learned anything about friendship, it's to hang in, stay connected, fight for them, and let them fight for you. Don't walk away, don't be distracted, don't be too busy or tired, don't take them for granted. Friends are part of the glue that holds life and faith together. Powerful stuff." Jon Katz
My life is so rich because of the people that are in it and I appreciate these three ladies putting their emotions on their sleeves. Not everyone is as comfortable putting it all out there so thank you.
1) The Montreal Years by Lara
Kate and I met as 4 year olds in a local preschool program. For those blog readers out there that don’t know Kate personally, you should know that she has an amazing sense of humor, and to this day, can make me laugh until I cry. One of our favorite things to do when we were young was to stage very dramatic, fictional skits. And looking back, some of the scenarios we came up with were downright bizarre. We invented a very intricate storyline about two old women named “Milly and Tilly” (played by us) who were essentially cranky old biddies who made fun of one another and screamed off the porch at (imaginary) neighborhood kids. We coerced my two little brothers to play their unfortunate husbands, and would rope them into what we thought was our hilarious game by barking orders at them to “make us lemonade” etc. To our parents’ credit, this somehow did not alarm them.
Kate and I are very different. By 12 years old, Kate was close to 6 feet tall, and I was about 4 ft. 5. She has older siblings, and knew the “ways of the world” before I did. She had already fallen in love by the time I was getting fitted for my headgear. And I am a land mammal, while Kate on the other hand was born to be in the water. She was a nationally ranked swimmer and incredibly strong and fast in the water. I never heard her complain about the long hours at the pool, the early wake ups in the middle of winter, and having to juggle schoolwork with swimming. (She did however have a way of getting people to massage her back and shoulders - often.) Kate was focused and dedicated, but humble. She never took herself too seriously to have fun, laugh, and celebrate her friends’ triumphs. We had so much fun together, and there are so many memories … of food fights, bike rides, listening to music in her room, and dreaming together about what life had in store for us. Neither of us could have imagined that she would get cancer at 31.
I was planning a one-year move to Sweden when I heard from Kate in early 2011 that she had been diagnosed with breast cancer. Let me just pause here to emphasize that cancer sucks, and I hate everything about it. But in a way, Kate’s diagnosis brought us closer together. During Kate’s first round of treatment, I was only a bus ride away from her after years of living on separate sides of the country or world. It turns out that all the memories had been waiting there like little seeds in the ground and before long, a new friendship had grown out of the old one. I am so grateful for that.
When I spend time with Kate, I am aware of every version of her, past and present. The wide-eyed child, the comedian, the poet, the romantic, the fierce competitor, the intelligent woman, the ambitious professional, the adventurous spirit, the lover of life, the mother, the wife. And always, the loyal friend. What I have learned from being Kate’s friend throughout two cancer diagnoses and rounds of treatment is that cancer does not define a person. Cancer does not sum up who Kate is (it couldn’t if it tried!) even though it has done everything in its power to take over. I have learned that thoughtful questions are often more supportive than advice. I have learned how to hold hope when sitting with a friend in the dark places. I’ve learned that there is such a thing as a badly timed joke, but that laughter is ALWAYS good. And I think our make believe game about being old women was just practice for the day when we’ll sit on a porch somewhere with white hair and lined faces, and make each other laugh.
2) The London Years by Charlotte
What do you write about your friend who has cancer? She is brave, she is beautiful and she is OBB. Now oBB. She is also honest, afraid, and vulnerable. That's what I've learned from having a best friend battling cancer, it's a constant tale of 2 halves that give as quickly as they take away. It breaks your heart, yet the fight gives you hope, and it leaves you angry whilst showing you depths of friendship and love you never knew possible. You'd never wish the experiences Kate's been through on anyone but it has taught me huge amounts; and in many ways it has given our already wonderful friendship strength to be forever treasured.
Kate and I met in London almost 9 years ago and we lived a very happy, sometimes scandalous, few years together! London brought Atle and Kate together and I watched her grow into a woman ready to be a wife and mother. Looking back, yes we were close, but in some respects we were in danger of our friendship becoming another transient relationship that you often find in London, great fun but once distance (such as Kate moving to Oslo) is added into the mix, the depth of friendship can waver. However, when Kate was first diagnosed, we became closer than ever. Cancer can take an enormous amount away from you, but it gave us a solidarity that now nothing will ever change.
The London days now feel like a lifetime ago, Kate, Atle, and Ida have been through so much since then and I've seen my darling friend go through pain, heartbreak, and unimaginable fear with dignity and unwavering love for those around her. Her writing has allowed us into her deepest thoughts, and her ability to create hope and humour out of some of her worst experiences has inspired others fighting this awful disease. As her friend, I've felt my own array of emotions during this time from enormous amounts of pride and respect, to deep sadness and anger on her behalf. I've also felt terribly selfish at times but I've learned that's ok. It's ok to continue your life as best you can and enjoy it. Kate would hate it if we were all miserable on her account. It's ok to tell her to pull herself together on the rare occasions she has truly dark days and it's ok to cry tears for her and for you because you are going through this too. That's the thing with cancer, it doesn't just happen to the person diagnosed, it's a team effort and everyone close to that person is affected and is allowed to feel their own pain from it.
My advice to anyone in a supporting role would simply be to appreciate there are no hard and fast rules on what to do, you won't always be perfect and you won't always get it right, you'll say the wrong thing sometimes and you'll inevitably not know what to do most of the time. Just be there, listen, stay true to your friendship (because it'll keep you both sane) and have your own support network you can fall on when you need to break down.
Kate, you have always been the most wonderful friend and in the face of real adversity you have remained one of the people I rely on most in the world. You've been mid-chemo and checking in to make sure I am ok, you've worked tirelessly to ensure you remain the wife and mother Atle and Ida need. You've helped create the woman I now am by teaching me about true courage and valor, my respect for you is endless. We are both far from perfect but I'd argue our fun, honest, unquestionable friendship is, and for that I am eternally grateful. We are no longer the carefree girls from those distant London days, we are young women with battle scars of varying degrees that make us people I admire.
Atle, thank you for being the man who loves my friend. Ida, you are a delight in every way and you bring joy to us all. Every piece of love and sense of pride I have for Kate, I have for you both also in equal measure.
3) The New Friend
We were still getting to know each other when Kate was diagnosed with cancer. Being a scientist of some sort, I knew about Herceptin, the BRCA genes and the problems with mammography screening, but I was completely naïve about the particular issues faced by young women with breast cancer. I saw my (new) friend make difficult decisions like foregoing immediate breast reconstruction, as it would mean precious weeks where she would not be able to cuddle her baby. I saw how she sat and held and loved my new baby while facing great uncertainty about her own ability to conceive again. I saw how over and over again, time away from her child was one of the worst consequences of her treatment. There have been many many nights when I have been up with my own sleepless, screaming children and have felt an immense gratitude for being present, for being able to care for them. If it hadn’t been for Kate´s example, I likely would not have found this grace.
Finding ways to support Kate since her diagnosis has been easy. Although she often uses humor to communicate what she is going through, you can hear what she really needs if you listen carefully enough. And by listen I mean listen in the broad sense – to the silences, the hesitations, the body language. I also recognize that Kate´s needs are often (always!) bigger than what one person can help with alone – so I often reach out to her other friends (and not only the closest ones) – and tell them the specific ways I think we can help.
It is natural and perhaps necessary that friendships evolve when someone is facing a major illness. Shortly before Kate started treatment, I remember saying “I know I am not your best friend in the world but I am going to try to act like I am.” I have definitely tried to live up to that, and in doing so gained Kate as one of my best friends in the world.
What do you write about your friend who has cancer? She is brave, she is beautiful and she is OBB. Now oBB. She is also honest, afraid, and vulnerable. That's what I've learned from having a best friend battling cancer, it's a constant tale of 2 halves that give as quickly as they take away. It breaks your heart, yet the fight gives you hope, and it leaves you angry whilst showing you depths of friendship and love you never knew possible. You'd never wish the experiences Kate's been through on anyone but it has taught me huge amounts; and in many ways it has given our already wonderful friendship strength to be forever treasured.
Kate and I met in London almost 9 years ago and we lived a very happy, sometimes scandalous, few years together! London brought Atle and Kate together and I watched her grow into a woman ready to be a wife and mother. Looking back, yes we were close, but in some respects we were in danger of our friendship becoming another transient relationship that you often find in London, great fun but once distance (such as Kate moving to Oslo) is added into the mix, the depth of friendship can waver. However, when Kate was first diagnosed, we became closer than ever. Cancer can take an enormous amount away from you, but it gave us a solidarity that now nothing will ever change.
The London days now feel like a lifetime ago, Kate, Atle, and Ida have been through so much since then and I've seen my darling friend go through pain, heartbreak, and unimaginable fear with dignity and unwavering love for those around her. Her writing has allowed us into her deepest thoughts, and her ability to create hope and humour out of some of her worst experiences has inspired others fighting this awful disease. As her friend, I've felt my own array of emotions during this time from enormous amounts of pride and respect, to deep sadness and anger on her behalf. I've also felt terribly selfish at times but I've learned that's ok. It's ok to continue your life as best you can and enjoy it. Kate would hate it if we were all miserable on her account. It's ok to tell her to pull herself together on the rare occasions she has truly dark days and it's ok to cry tears for her and for you because you are going through this too. That's the thing with cancer, it doesn't just happen to the person diagnosed, it's a team effort and everyone close to that person is affected and is allowed to feel their own pain from it.
My advice to anyone in a supporting role would simply be to appreciate there are no hard and fast rules on what to do, you won't always be perfect and you won't always get it right, you'll say the wrong thing sometimes and you'll inevitably not know what to do most of the time. Just be there, listen, stay true to your friendship (because it'll keep you both sane) and have your own support network you can fall on when you need to break down.
Kate, you have always been the most wonderful friend and in the face of real adversity you have remained one of the people I rely on most in the world. You've been mid-chemo and checking in to make sure I am ok, you've worked tirelessly to ensure you remain the wife and mother Atle and Ida need. You've helped create the woman I now am by teaching me about true courage and valor, my respect for you is endless. We are both far from perfect but I'd argue our fun, honest, unquestionable friendship is, and for that I am eternally grateful. We are no longer the carefree girls from those distant London days, we are young women with battle scars of varying degrees that make us people I admire.
Atle, thank you for being the man who loves my friend. Ida, you are a delight in every way and you bring joy to us all. Every piece of love and sense of pride I have for Kate, I have for you both also in equal measure.
3) The New Friend
We were still getting to know each other when Kate was diagnosed with cancer. Being a scientist of some sort, I knew about Herceptin, the BRCA genes and the problems with mammography screening, but I was completely naïve about the particular issues faced by young women with breast cancer. I saw my (new) friend make difficult decisions like foregoing immediate breast reconstruction, as it would mean precious weeks where she would not be able to cuddle her baby. I saw how she sat and held and loved my new baby while facing great uncertainty about her own ability to conceive again. I saw how over and over again, time away from her child was one of the worst consequences of her treatment. There have been many many nights when I have been up with my own sleepless, screaming children and have felt an immense gratitude for being present, for being able to care for them. If it hadn’t been for Kate´s example, I likely would not have found this grace.
Finding ways to support Kate since her diagnosis has been easy. Although she often uses humor to communicate what she is going through, you can hear what she really needs if you listen carefully enough. And by listen I mean listen in the broad sense – to the silences, the hesitations, the body language. I also recognize that Kate´s needs are often (always!) bigger than what one person can help with alone – so I often reach out to her other friends (and not only the closest ones) – and tell them the specific ways I think we can help.
It is natural and perhaps necessary that friendships evolve when someone is facing a major illness. Shortly before Kate started treatment, I remember saying “I know I am not your best friend in the world but I am going to try to act like I am.” I have definitely tried to live up to that, and in doing so gained Kate as one of my best friends in the world.
Saturday, November 9, 2013
Six Digits Later
Hi Everyone,
A major milestone was reached this week - my blog hit the 100,000 mark in terms of visits. Now I know I am no Kardashian or Adrianna Huffington but I think reaching six digits is definitely an achievement and I would have never made it here without all of you. It all started in a flat in downtown Oslo when I was a week or two post mastectomy and pondering how the hell I would get through the Big C. And now I have been through a whole other round but am most importantly still here. This blog has been so deeply cathartic for me and allowed me to say what I feel and face some of the more difficult experiences and emotions. It has also made it possible to keep you all informed of how I actually am doing without sending a hundred emails which is key when you are operating at a severely reduced capacity. This blog started with a small army and has grown into a full force to be reckoned with and for that I am forever grateful. You have been there for me through it all - pulled me up when I was down and celebrated the wins that were so special. In celebration of this, I will remain silent for once and let some special people who have been here from the beginning tell their side of my Big C. It will be written in two parts as it appears that "my people" have alot to say and I don´t want to edit out anything because it is all so important. I hope you enjoy it!
Part 1: The OBB Family
The words of my dear husband (AKA My Cancierge)
Six things I learnt from C.A.N.C.E.R:
Cancer. Scary word. It happened to US.
It first happened to you and then it found me. You and I have collided unexpectedly across the generations on this cancer journey. For me at my age, it was within the norm; for you at your age, it is not in the norm. We shared this new bond reluctantly. I was the passenger who asked for “Permission to board the vessel” ( Blog # …). You forged the way with surgery and chemo. When it was my turn, you advised and supported me. Our closeness grew.
I was devastated when you were given your diagnosis and found myself in the frightening position that I could not fix it or make it go away. That’s not what mothers do. I witness your suffering and it twists my heart. So what could I do? I can walk by you, share your load, listen to your cries, fears, and hopes and surround you with my love.
Through our almost daily texts or chats, I learned that listening helps, providing perspective can help but not giving advice. … That pervasive fears, feeling sick, sadness and frustration are very much part of this journey and need acceptance. I can only imagine but never fully understand another’s experience through a life threatening illness. It keeps me humble and attentive….Also that recovery is much slower and more subtle than one would assume…. that symptoms can linger for many years but often are invisible. Cancer changes the person. The expectation of wellness can be a burden to the sick person, so be cautious with asking” How are you?” . Within myself, as a mother, my life has become a silent prayer for your well being and healing. I ask for the graces that you need, each time something difficult arises.
With amazing skill and originality, you chronicled this unwanted and troubling experience from the start. You brought shape and reality to it, with your honesty, and sense of humor. Your words have tamed this frightening and life altering experience. Your blogs, show your amazing capacity to transform your fears, name your feelings and experiences and chronicle your progress. Through your courage and clarity, you have become a beacon for others. You inform, and evoke compassion and love. And you have gathered through your blogs an invisible but mighty support.
I believe, some of my prayers are being answered. You, my wonderful daughter have emerged through these challenges as an extraordinary, loving, courageous, and very articulate young woman. I am proud of you. You keep going day by day, looking ahead, even when the going gets very rough. You love your little daughter, my precious little granddaughter, and remain connected in love with your white knight in shining armor. He also deserves serious accolades.
Kate, you have also inspired and engaged many of my friends, to pray and care for you, They also support me because they understand how difficult it is to witness your child’s suffering. You have created a circle of support, across generations, - now with over 100,000 readings of your blog. We all want to see you get well and are wishing a mighty wish. We know there are no guarantees and accepting the unknown is a daily chore. What we know that you are loved, respected and even admired. You shine with a bright light! I love you abundantly. Mom
A major milestone was reached this week - my blog hit the 100,000 mark in terms of visits. Now I know I am no Kardashian or Adrianna Huffington but I think reaching six digits is definitely an achievement and I would have never made it here without all of you. It all started in a flat in downtown Oslo when I was a week or two post mastectomy and pondering how the hell I would get through the Big C. And now I have been through a whole other round but am most importantly still here. This blog has been so deeply cathartic for me and allowed me to say what I feel and face some of the more difficult experiences and emotions. It has also made it possible to keep you all informed of how I actually am doing without sending a hundred emails which is key when you are operating at a severely reduced capacity. This blog started with a small army and has grown into a full force to be reckoned with and for that I am forever grateful. You have been there for me through it all - pulled me up when I was down and celebrated the wins that were so special. In celebration of this, I will remain silent for once and let some special people who have been here from the beginning tell their side of my Big C. It will be written in two parts as it appears that "my people" have alot to say and I don´t want to edit out anything because it is all so important. I hope you enjoy it!
Part 1: The OBB Family
The words of my dear husband (AKA My Cancierge)
Six things I learnt from C.A.N.C.E.R:
Courage - you find a whole lot of this in the person you are supporting with cancer and most likely you will realise you yourself have much more of this than you ever thought. The most courageous person I know is OBB.
Anger - cancer makes you angry and that's fine. If seeing this happening to a person you love, isn't a valid reason to be angry, nothing is. Just remember to not always be angry. The person who needs you wants to see your smile when they are feeling down.
Normal - to a certain extent cancer is a part of life. I learnt that breast cancer is much more common than I thought, with about 1 in 10-12 women being affected. To our advantage and because of how "normal" breast cancer is, science has made leaps and bounds over the past 20 years increasing survival rates by 50%. Go Science!
Control - as a cancierge (someone supporting someone through cancer) many things are out of your control. This is extremely frustrating. My advice is control what you can control. Be practical and make sure you keep your home nice and you children fed. Make sure feet are rubbed, tears are dried and hugs and kisses are given. You are now the rock and the person who will keep the cogs of a family turning whilst you get through this. Embrace the role, but don't be scared of asking for help from family and friends.
Expectations - when this happens to your loved ones it is very hard to know what expectations the person with cancer has to you. Presume they have none. They know you can't cure their cancer. But don't let that be a reason not to show them you care. If you think about something you would like to do for them, but you hesitate to do it because you expect they do not want to be disturbed, throw that expectation out the window and reach out. It will be appreciated.
Real - cancer is very much real and no longer anything I thought only happened to someone else. Although part of our "innocence" is lost through this I have also discovered what real love is. I love you, OBB.
The words of my lovely mother, a breast cancer survivor herself.
Cancer. Scary word. It happened to US.
It first happened to you and then it found me. You and I have collided unexpectedly across the generations on this cancer journey. For me at my age, it was within the norm; for you at your age, it is not in the norm. We shared this new bond reluctantly. I was the passenger who asked for “Permission to board the vessel” ( Blog # …). You forged the way with surgery and chemo. When it was my turn, you advised and supported me. Our closeness grew.
I was devastated when you were given your diagnosis and found myself in the frightening position that I could not fix it or make it go away. That’s not what mothers do. I witness your suffering and it twists my heart. So what could I do? I can walk by you, share your load, listen to your cries, fears, and hopes and surround you with my love.
Through our almost daily texts or chats, I learned that listening helps, providing perspective can help but not giving advice. … That pervasive fears, feeling sick, sadness and frustration are very much part of this journey and need acceptance. I can only imagine but never fully understand another’s experience through a life threatening illness. It keeps me humble and attentive….Also that recovery is much slower and more subtle than one would assume…. that symptoms can linger for many years but often are invisible. Cancer changes the person. The expectation of wellness can be a burden to the sick person, so be cautious with asking” How are you?” . Within myself, as a mother, my life has become a silent prayer for your well being and healing. I ask for the graces that you need, each time something difficult arises.
With amazing skill and originality, you chronicled this unwanted and troubling experience from the start. You brought shape and reality to it, with your honesty, and sense of humor. Your words have tamed this frightening and life altering experience. Your blogs, show your amazing capacity to transform your fears, name your feelings and experiences and chronicle your progress. Through your courage and clarity, you have become a beacon for others. You inform, and evoke compassion and love. And you have gathered through your blogs an invisible but mighty support.
I believe, some of my prayers are being answered. You, my wonderful daughter have emerged through these challenges as an extraordinary, loving, courageous, and very articulate young woman. I am proud of you. You keep going day by day, looking ahead, even when the going gets very rough. You love your little daughter, my precious little granddaughter, and remain connected in love with your white knight in shining armor. He also deserves serious accolades.
Kate, you have also inspired and engaged many of my friends, to pray and care for you, They also support me because they understand how difficult it is to witness your child’s suffering. You have created a circle of support, across generations, - now with over 100,000 readings of your blog. We all want to see you get well and are wishing a mighty wish. We know there are no guarantees and accepting the unknown is a daily chore. What we know that you are loved, respected and even admired. You shine with a bright light! I love you abundantly. Mom
Thank you to my dear husband and mother for being a part of this celebration and being there for every step of the way. I love you both.
Last Words...
While putting my daughter to bed last week, I asked her a question I hadn't asked her before - "How did you feel when mommy got sick?"
She looked at me pondering the question and then said (in Norwegian) "Mommy - I was sooooooooooooo scared."
Me too monkey...me too.
Last Words...
While putting my daughter to bed last week, I asked her a question I hadn't asked her before - "How did you feel when mommy got sick?"
She looked at me pondering the question and then said (in Norwegian) "Mommy - I was sooooooooooooo scared."
Me too monkey...me too.
Look forward to Part 2.
Love,
OBB
Saturday, November 2, 2013
Girl Interrupted
Hi Everyone,
This is a quick check in to let you all know that I have made it home safe and sound. Nothing too profound to say but a few thoughts and pics to show you how I am feeling and where exactly I was.
Despite what I first thought upon arriving at rehab (always makes me laugh when I say that) - I did come away from the experience a richer and better person. After reading my last post, I think it was evident that I had learnt some valuable lessons and I pleased to report that my education continued once I got home. It was so wonderful to see my husband and daughter again and they were definitely happy to see me too. Apparently I have a fairly key essential role and presence in this house and its absence was duly noted. :) What can I say - everyone loves to be missed. But what I also discovered was that after only a few short hours, I felt stressed again and the pace of life slightly overwhelming. I truly underestimated how much more energy and work goes into looking after others rather then just yourself. After a day or two, I felt drained and exhausted again and the healthy glow in my face had faded slightly. Now don't get me wrong people - I love my family and there isn't anywhere else I would rather be but it made me think...alot. We so easily let day to day life take too much out of us and suddenly we stop really living. We are simply surviving. I know many of my friends do the same with all the stresses and pressures from work, family and life. It is nearly impossible not to let it take you down without even being aware of it. After the wool has been pulled from my eyes, I personally just don't want to live that way but it takes alot of work to stop the cycle. But this experience of being away has started me on the right path - I know what I want now and wasn't aware of it at all until now. Trying to be the perfect mother, the best wife, the go to friend and the hardest working employee is a recipe for self destruction yet many of us try to do it all and lose parts of ourselves in the process. Something always suffers. I know I can't do it all (and throw in a fight for your life) and suddenly you are drowning. So I will try to not do it all but prioritise what is really important to me right now and act accordingly. I need to capitalise on this newfound perspective and not just let old patterns and routines fall back into place. My time to change is now.
Here are some pictures of the rehab center, its surroundings and some selfies (slang for pictures of yourself). I definitely think rehab did me good.
Hugs and happy weekend!
OBB
This is a quick check in to let you all know that I have made it home safe and sound. Nothing too profound to say but a few thoughts and pics to show you how I am feeling and where exactly I was.
Despite what I first thought upon arriving at rehab (always makes me laugh when I say that) - I did come away from the experience a richer and better person. After reading my last post, I think it was evident that I had learnt some valuable lessons and I pleased to report that my education continued once I got home. It was so wonderful to see my husband and daughter again and they were definitely happy to see me too. Apparently I have a fairly key essential role and presence in this house and its absence was duly noted. :) What can I say - everyone loves to be missed. But what I also discovered was that after only a few short hours, I felt stressed again and the pace of life slightly overwhelming. I truly underestimated how much more energy and work goes into looking after others rather then just yourself. After a day or two, I felt drained and exhausted again and the healthy glow in my face had faded slightly. Now don't get me wrong people - I love my family and there isn't anywhere else I would rather be but it made me think...alot. We so easily let day to day life take too much out of us and suddenly we stop really living. We are simply surviving. I know many of my friends do the same with all the stresses and pressures from work, family and life. It is nearly impossible not to let it take you down without even being aware of it. After the wool has been pulled from my eyes, I personally just don't want to live that way but it takes alot of work to stop the cycle. But this experience of being away has started me on the right path - I know what I want now and wasn't aware of it at all until now. Trying to be the perfect mother, the best wife, the go to friend and the hardest working employee is a recipe for self destruction yet many of us try to do it all and lose parts of ourselves in the process. Something always suffers. I know I can't do it all (and throw in a fight for your life) and suddenly you are drowning. So I will try to not do it all but prioritise what is really important to me right now and act accordingly. I need to capitalise on this newfound perspective and not just let old patterns and routines fall back into place. My time to change is now.
Here are some pictures of the rehab center, its surroundings and some selfies (slang for pictures of yourself). I definitely think rehab did me good.
Hugs and happy weekend!
OBB
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