Tuesday, October 29, 2013

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

Saturday, October 26, 2013

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

Thursday, October 10, 2013

After the Rain...A Rainbow Appears

I wanted to give you all an update on things in my life. Another week has gone by and thankfully there havent been any medical emergencies. Now that's a first! A boring week is just what we needed in our house. I have been so tired lately, feeling anxious and having such terrible pain throughout my body. I am really feeling the chemo‘s effect on my joints even down to my fingers - everything feels like it has been through the wars and it is frustrating. Not to mention the fact that my fingers go white and numb when I walk outside for literally a minute or even while eating a cold apple. I will need arctic down mittens before Halloween even arrives! Oh happy fun chemo side effects.

I think anger has been the theme of the week. It was almost like this whole nightmare with my sick leave coverage acted as a catalyst for unleashing all my anger over everything that has happened. I felt like all of my problems stemmed back to one thing - CANCER! I think I have managed to stay fairly calm throughout the last few years and accepted much of what was thrown my way. Anger was not something I felt much of but lately it is all I feel. I am angry at the time I feel has taken from me. I am angry at all the side effects I am living with that may or may not ever go away. I am angry that i cannot just get up tomorrow morning and go to work like most people. I am angry that even though i have been to hell and back, I have no guarantees over what the future holds for me. It all just seems to unfair. You know I think a lot of people especially young people take for granted the fact that they are able to work. Yes sometimes it can suck but trust me life would be boring without it.  I would give so much to snap my fingers and be able bodied again. With so many issues happening with my body at present, sometimes I get scared that I wont ever be well enough or strong enough to function the way I want to. So yes you can see that things have been challenging as of late.

However my husband and I got such a shock this week that finally allowed us to catch a break.Things were looking so bleak for us in terms of this battle over my sick pay and my husband had been working tirelessly on it for weeks. I was fairly useless in the situation as all I would do is start to cry. We were expecting a defeat because the last few years have been one bad luck scenario after another. And with so many defeats, it can become very difficult to change your mindset and think things will be different. But things are different. They have reversed their ruling and everything is going to be okay! We were both relieved when we found out but also felt oddly deflated by the surprise decision. I think when you expect and prepare for the worst but then get the opposite, there is a bit of an anti-climax reaction. We both thought we would have to keep fighting but suddenly the clouds have cleared and the sun is shining again. I am happy though and I feel like now I can focus on getting better and working my way back slowly the way it needed to happen. I also will be able to focus on my rehabilitation and will be leaving in a week and half to spend 2 weeks at a Cancer Rehabiliation Centre in another part of Norway.The program is individualised and focuses on getting you physically and mentally stronger after treatment. I knew this program was exactly what my body needed but I was so afraid of being away from my family for so long.The actual program is 3 weeks but we managed to get them to allow me to stay for 2. Being away from my little monkey is so tough for me especially when I feel that my future is still so uncertain. You just want to squeeze everything out of every moment and not miss a thing. And as a mother you of course think that both your child and husband will completely fall apart without you there acting as the glue! But of course they will survive and are more then capable of being away from you. It is about time I focus on me - no interruptions, no distractions, no nothing. Because as much as I try to rest at home, it never actually happens. I feel too guilty and just dont want to spend my days in bed. This will be good for me and will make me a better person who will be better equipped to cope with life again.

The road ahead is unknown and we will need all the strength we can to get through the next challenges that come our way. Like that scan that looms in the background - I cant escape the fear of what it represents and how much weight it bears on my life, on my future. Like I told Dr Sunshine yesterday - I just can't do cancer a third time...I just can't.

I wanted to thank so many of you that reached out to us when things were looking bleak over the last few weeks.So many of you have such generous hearts and kind souls and were ready to help in any way you could. It reminds me of all the good in this world and that it isn't all doom and gloom. The love that has surrounded us has been amazing and I want to thank you for showing us what good people there are in our lives. And thank you to my husband for fighting so hard for me. Finally a victory for Team NorCan. I love you.


PS We are fast approaching 100,000 visits to this page. Very exciting milestone for me. Thank you for all the support and keep reading.

Friday, October 4, 2013

My Pinktober Story

A long time ago, there was a little girl who grew in a white house on a street in a typical suburd. The street had an archway of tall proud maple trees that would frame the road - in winter the tress would stand like bare skeletons with sprinklings of snow and in the fall they would be covered in the most amazing reds and oranges. She grew up surrounded by love and was fortunate enough to never really know what it was like to feel sad, to suffer or be invisibible to those around her. She had parents who believed in her and enabled her to do everything she set her mind to. She had siblings who she looked up to and tried to copy all the time. She even had a lovely dog who was loyal and provided extra comfort on days when she needed alittle bit more. It was a life filled with colour and happiness. I don´t think this little girl quite understood how lucky she was at the time and perhaps thought that this was the way everyone lived. Because how else can you know at such a young age? Your life is really all you know. As she grew up, she became disciplined and motivated to succeed is all avenues of her life. She made friends easily and used her sense of humour to make life just alittle bit funnier. As she got taller, she also discovered that she had lots to learn and not all her qualities were perfect. This was when she really started evolving as a person. As the years passed, she learned more and more about what she wanted out of life and also the things she didn´t. She wasn´t afraid to take chances and close her eyes and just jump. Sometimes she hit hard ground, hurting herself in the process, other times that leap took her to the most amazing places. And with every step, a lesson was learned. Her taste for adventure eventually took her across the world to start a new life that she had always dreamed of doing. She also left behind some very special people too that made some days tougher then others. Life on the other side of the ocean was exciting but scary. While finding her feet, she stumbled quite a few times but never left an experience behind without taking something valuable from it. She learnt so much about relationships - what she wanted, what she didn´t, how hard it can be to change, how scary situations can get. Unfortunately, she also got her first taste of tragedy and sorrow, losing one of the most important people in her whole world. It was sudden, it was horrific and it changed her forever. Life didn´t always listen to what we wanted and nothing could ever be taken for granted again.

True love took her by surprise on one very ordinary day. It didn´t take flight immediately but rather took some twists and turns before it found its way forward. But when it happened, for the first time she knew. She really never looked back after that and everything else fell into place. All the things she had been afraid of and not ready for suddenly were things she wanted.That fearlessness and sense of adventure kicked in again and she packed up her life and headed to a new place, a new life. It was here that she built a family with her other half and  the most beautiful little girl joined this world. Again, she changed through motherhood into an even better version of herself. She loved being a mom and loved this little person more then she could have ever imagined. Having this little angel set up a chain reaction of events that took her all the way to today. Still to this day, she believes that this baby saved her life and that the darkness in her that was growing would have gone too far. It keeps her going, this knowledge of how much worse things could be. But this little girl who became a woman, then a mother and finally a wife also became a cancer patient. That little girl who collected piles of leaves in the backyard and jumped off the deck into the soft mountains of yellow and red, never imagined things would be the way they are now. Fighting for her life - the endless hospital visits, operations, treatments, constant pain,   and learning to live with all this uncertainty - was never part of the plan. Being part of this group of pink soldiers at such a young age still feels so strange and foreign, like it is actually happening to someone else. Not her. But the scars, the physical limitations, the cabinet overflowing with pill bottles reminds her of the truth. Her fear over what will happen tomorrow reminds her of the truth.  Instead of thinking of one day buying a cottage in the mountains, of making it to the top level of her career, of growing her family - all she can think about is being given the chance to stay alive. She sees now that it isn´t about all that extra stuff around you that makes your life whole, it is actually being there to participate and be in the moment that means everything. Like a wise person once said, you can´t take all of this stuff with you when you go. All she wants is to be there to watch the people she loves grow up just as she did - surrounded by love, happiness and a few piles of leaves to dive into!

I am the face of breast cancer. You don´t need to be too young, too wealthy, too healthy or too fearless to be called to the pink army. Empower yourself and know your body. I never want to lecture anyone or make anyone afraid but if my experience can save someone else from living my reality then I have succeeded. We never know where the road will go so make sure you don´t always just look ahead at what´s coming but also look at what is happening right now.