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. :)



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.

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 na├»ve 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:

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 too. 

Look forward to Part 2. 



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!