When A Light Goes Out

“It's so much darker when a light goes out than it would have been if it had never shone.”  John Steinbeck, The Winter of Our Discontent

It has been a long time again since I put words to the screen and I failed in my repeated efforts to write a post surgical update after the operation on Feb 10th. It wasn't an easy ordeal but I will save that for another day. Today is for someone else.

Yesterday, the snow fell especially hard and covered the roads, trees and houses with snow that looked just like powdered sugar. There was a real beauty about it as it crunched under my feet as I walked. It was also the day, I joined a number of other mourners to celebrate the life and the loss of a wonderful person that I had the pleasure of knowing. I am not going to pretend to say that we were the best friends because we weren't but we shared a special and unique bond of cancer and through that bond, we had an openness in the way we talked and communicated. I remember the first time we met in person and three hours flew by and we hadn't even gotten through half of what we wanted to say. It was easy and effortless because we understand each other and the struggles of this disease at a young age. And all the extra challenges that come with it. There was an unspoken understanding.

When I found out that she had lost her battle, I was in shock and it sent a jolt to my heart. The tears prickled my eyes. I immediately thought back to the fact that we had been trying to see each other over the last 4 weeks and I just didn't find a free moment after my surgery. Life got in the way as it does and now I ache at my inability to prioritise. Life waits for no one.  Last night, I read back our messages that spanned two years and thought how strange the world is that we live in. With social media, email, text messages...everyone becomes immortal. There is always a trace of their life for us to read, to see, to hear and to remember. Nothing disappears. Facebook pages become unofficial memorial pages where we write to the person as if there were still here.

I spent a lot of yesterday thinking about her. Thinking about her and her family - their pain and infinite loss that was so fresh and sharp. About the unfairness of this disease and the random way it picks its victims. When you are told you have cancer, you join this special club where you learn to live with uncertainty and an utter lack of control over your situation. At the end of the day, it comes down to sheer luck in terms of what those pesky cells decide to do. No doctor, no amount of chemo or radiation will ensure anything. And that randomness makes no sense at all and it messes with our inate human instinct to want to explain away everything. But there is no explanation for why a young mother is forced to leave her family behind? It makes no bloody sense at all! And why they had to also struggle through extraordinary amounts of pain and suffering despite being a loving and gentle soul.

When I think back to my own relapse which is now nearly 3 years ago, there was a group of women who also suffered the same fate at the same time. But today they are all also gone. Leaving behind children, husbands, mothers, fathers, questions unanswered and lives unfinished. Why? It makes me mad thinking about why someone survives and another doesn't and it is also utterly terrifying. On the other hand, it is so messed up to think that I was and am so damn lucky to be alive yet at the same so terribly unlucky for having lived through two terrible breast cancer diagnoses. It really messes with your state of mind and even brings up feelings of survivor guilt. I feel a real duty to these fallen comrades to be out their living life to the max and grabbing life by the balls. But when i look at my life, I don't feel so great. I live with chronic pain that keeps me up at night, I survive on narcotics that I have to someday ween myself off, my body is a battlefield of scars and I live in constant fear that it will all come back. It is hard to push through these challenges and go out and dance in the rain and live life as if everyday were the last. Yet I feel terrible complaining about anything because it all could have been so much worse.  How do I find the balance? How do I honour these women and the robbery of a long life they lost and still be gentle with myself?

So today, I am thinking of that new angel who got her wings and joined an elite group of pink heroes who should remind all of us that life is precious. Forget pride, forget anger, forget who's right and wrong, forget what you think you know and forget living like you have a million tomorrows. I get so angry when I see people act unkindly to one another, or stress about something that really isn't that big a deal. Is it really that important? Is it worth losing time over? I can bet you anything that that lovely woman who left this earth this week, would have given anything for another tomorrow, Let's not waste ours.

Rest in peace my friend.

OBB

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

10 Things I Learn in Rehab

  It is one week since I arrived here and guess what? I am still here. A definite feat in itself for me as I was sure I would have been gone by the weekend. As you can see from my last entry - things have been decidedly tricky and challenging for me here. If I am being honest, I have to say that things have got easier for me here and I have managed to take some pretty positive things away from this experience. I will not be sticking it out for the whole time though because I feel this journey is coming to a natural close for me and it is time to go home. A week of rest and reflection has sufficed and I feel that my time will now be best spent home with my family now. As I said earlier things didn´t quite go according to plan and the absence of people in similar situations made it especially hard for me. I am an extrovert who likes to talk and share my feelings and experiences (I think this blog is fairly self explanatory on that front) so being on my own most of the time to process and reflect over recent my life´s events has been difficult. I am proud of the fact that I got to this point and that I did some soul searching along the way. What have I discovered after a week in the mountains away from normal life? Check out my top 10 list.

1) I want to actually set the wheels in motion to turn this blog into a book. Many of you have suggested this and it has always been in the back of my mind. It wont be easy and will require discipline and time but it is a dream I want to realise. You can´t put ure dreams off forever.

2)  I am afraid. Time is my most precious commodity and sometimes it holds me prisoner due to my fear over the uncertainty of the future. I can´t realistically be there for every moment and that is okay. It just ends up taking its toll on me physically. But what I can do is be completely present for all those times I am there - no screens, no texts, no distractions.

3) I fear death. Having cancer once made me terrified of death. Having cancer twice has brought me closer to the reality of it. But just because I fear it, it doesnt mean it will happen. No one has actually told me when, where and how I will die so I can´t live like a dead woman walking. A pain in my chest doesnt mean I will collapse and die like my father did. A bad headache doesn´t mean that I have a brain tumour and will have a stroke. Every little pain doesn´t mean cancer.

4) I only have one body and I need to take care of it. I have to start prioristing myself and not trying to do everything. As hard and boring as it can be, rest is the most important thing I can do for myself right now.

5) I can´t put other people on hold especially the ones I love. I have to make time for them and them for me. You can´t always rely on there being a tomorrow.

6) Empathy is so key to people feeling listened to and cared for. It is something everyone should practice.

7) I am no good at being alone. I thought I was but being at home with the usual distractions is not really being alone. But when your strip it all away and put it all behind you - so it is just yourself - that is being alone and it can be terrifying. There is nowhere to hide. On the flipside, I have been able to see what amazing people I have in my life and that because of this I rarely ever have to feel alone. You know who you are - you girls are just amazing and define kindness and generosity and for this I thank you.

8) My biggest fears I have, as a result of my illness, are leaving my daughter with no mother to grow up with, my husband with no wife to remind him how special he is and my mother having to bury her baby. I don´t want this for any of them yet I have absolutely no control over what will happen. I can just hope that neither of them will know grief this like this ever.

9) I use humour and sarcasm to hide my true feelings. It is a deflection technique that allows me to lighten the mood and not really face the tough stuff. It also makes everything easier for those around me to cope with the seriousness of my illness. But it alters reality sometimes and can be tiring to hide behind a mask. Being truthful and honest is okay sometimes and you can cry and scream without judgement.

10) I am afraid of making plans. It took me so long to actually make any plans after I first got sick and there was such a reluctance on my part to commit to anything beyond next month. And when I finally did do it, it blew up in my face. Tickets and trips were cancelled and the fear of the future returned. I am back there now and feel like I can only make plans in small increments. From now til Januay 14th and then what next? I am so afraid of what comes next. I guess it all takes times and every time I make it past one milestone,  I will be able to see farther down the road. Look further into the future, my future.

So as you can see it has been far from all bad here and as predicted, I have managed to bring something positive out of a tough experience. I also met some wonderful people whom I will stay in touch with. Life can surprise you sometimes...

Thanks for all the love and support.

OBB xxx

Great Expectations

"Life is pleasant. Death is peaceful. It's the transition that's troublesome.” Isaac Asimov

I am sitting at the desk in my room up on a hilltop away from the rest of the world. You cannot even see the lake that curls around the building because of the heavy dense fog today. The weather perhaps best matches my kind of mental state - heavy and low. I am on day four of my rehab adventure and things are not going quite the way i had intended. I don´t know if my expectations were wrong and I was off the mark by expecting a happy go lucky place where the rooms were like a hotel, there were spa like treatments and the people warm and open. But this has much more of an institutional feel and I am really finding the whole experience challenging. I pride myself on being fairly open and friendly and can make friends pretty much wherever i go but this is a whole other level. In addition the fact that the staff have not been able to actually give me a plan for my stay until next week and I am one of the few that are not allocated to a group, makes it even tougher. Life revolves around groups here and there is little mingling outside of them. There is the muscle skeletal group, the back group, the heart group...and so on...And then there are the few islands like me who float along on their own but it seems those who are "lone rangers" are quite happy to exist on their own and keep to themselves. Hermits is perhaps an accurate description. No joke - I had a man who sits at my table actually put his hand over his face while he ate to avoid making any eye contact for me. But for me - being plucked out of your comfort zone and put in a new different place away from the people you love, having all of life´s normal distractions gone and being pretty much on your own, is my idea of a nightmare. I think most of you, despite what you say, would freak out too.  And let me tell you - time alone with your thoughts after having gone through what I have is a dangerous exercise. I am craving common ground - people who get what i am going through and understand what it is like to be so sick and be a parent at the same time. People who have had cancer would be a good starting point. Maybe I didn´t do enough homework before I came or failed to truly understand what an "individual program" meant but this is bloody hard! I know there will always be an element of transition involved in something like this and it is common for people to freak out abit when they first arrive here but I am struggling to see what benefits I am getting from being here right now. I know I am impatient and my illness has made me even more so as I am so angry at the time I feel has been taken from me and I want my life to start again right now. But I feel low here and am surrounded by people who seem much worse off them me. I can sit and talk with them and there are definitely some nice people here but they don´t understand my situation nor do I theirs. And I don´t think I am being that over dramatic because I was adopted by the Lung-Emphysema group who felt so bad for me eating alone and not having anyone to do anything with. Very sweet of them and I am ever so grateful for their kindness but this is not what i signed up for and I can´t relate to them. And last night the resident doctor took me under his wing and invited me to dine with the nurses and physios seeing as most of the time no one sits at my assigned table. When I brought my tray of baked fish and boiled potatoes (there is no chance I will be putting on any weight here!) over, the physio said to me "Oh are you a visiting medical student?" God how I wish i could have said yes - anything feels better then being a patient.

In my discussions with the kind Danish Doctor with the big beard, he has asked me lots of questions and listened to my difficulties in transitioning to life here. He even offered to drive to the closest city to pick up my husband and daughter to come visit me. What a sweet guy! But I told him that if they came now I would most definitely pack up and leave with them. I told him that a big part of me doesnt want to give up and feels so silly and embarassed for wanting to pack up and go home with my tail between my legs. It isn´t me - i am a fighter and I thrive on new adventures and experiences. But this feels so uncomfortable and all I can think about is my family that I am not with. I knew it would be hard to be away but not this hard. My husband tells me that I am not in prison and can decide what i want to do and he is ready to come break me out of here as soon as I send the sign. But I am reluctant because I want to try and tough it out. I guess you need to try and find something positive out of every experience (FYI - the Danish doctor disagrees with that statement). I am trying really hard to do just that and rest, do nice activities, etc...but maybe this isn´t me. Becoming a patient again surrounded by people in reduced capacities isn´t exactly the most empowering environment. I am so desperate for my life to get going again and it feels like groundhog day here. My advisor (the doctor) tells me that I am someone who needs to learn to slow down more and put myself first and being here is doing exactly that but I just don´t know if I can stick it out. I am so conflicted. I do feel like one of the only things keeping me here right now is a fear of defeat and of people thinking I am crazy for not enjoying this opportunity I have been given. i know lots of people would give their right arm to unplug for a few weeks away from everyday life but I just don´t know. Being away from my family is hard and I need to feel like it is worth it. Right now I don´t know. I don´t know alot right now. So as you can see things haven´t quite worked out the way i had imagined - there is an internal struggle ensuing inside me. And I don´t know which way it will go.

A Conflicted OBB