Again it has been about a month since my last entry and it is clear to everyone that this blog is proving to be more and more difficult to stay on top of. This is what happened for over a decade when life got in the way of doing what I love and my creativity dried up when other parts of my life picked up into a frenzying pace. It was only when illness forced me to slow down, that my love of writing was able to come alive again. But I don't want this blog to end because life got in the way, my journey is far from over so I will write when I can and keep you abreast of the important stuff.
I have been thinking a lot about something that I have been told hundreds of times over the last three years. It is something that friends, family, coworkers, my medical team and even strangers have told me over and over. "You must put your health first" they all tell me. Such simple advice but oh so difficult to actually do. Because honestly how many of us actually do that on a regular basis? Some of us smoke, others binge drink, most dont get the required exercise or your 5 a day and I am certain we all sweat the small stuff much more then we ought to. The truth is that life gets in the way of putting ourselves first more often than not. I am the first to put my hand up and say that I am terrible at this. And please don't think that I am playing the victim or martyr card here because I am not but rather I am just being honest. Despite having been seriously ill for about three years, I still push myself to complete exhaustion because I want to be the best mom, the best employee, the best wife and the best friend. But you know what? I am failing in many of these areas right now.
After over two months away from Cancer Town, I rushed from my last meeting to the car to make it to my palliative dr appointment in town. It felt weird walking through those two doors again and I felt so so so far away from that person who used to walk these corridors pulling an IV bag behind her. I was different now - my hair had grown enough so that it was creeping down my neck, my cheeks were rosy and I was dressed like a businesswoman ready to bust some balls. No one could have guessed that this woman pushing the elevator button was actually a patient - maybe a pharma rep or something! It was empowering. But when I arrived in the waiting area, I collapsed on the sofa in utter exhaustion and the receptionist who immediately recognised me remarked how it had been a long time, that I looked very tired and that she had cold water for me to drink. And you know what? God I was. My levels of tiredness have become far more complex and layered since cancer - there is the normal crap feeling, being very tired, excessively tired, ohmigod my whole body is screaming out in pain tired and then tiredness that actually stops me in my tracks and forces me to submit to it. I never even experienced these extremes after my first cancer round but the second one has been much more dramatic. I know discussing the different levels of tiredness can be so bloody boring and I hate talking about it myself but it is unfortunately relevant in my life right now. But back to the doctor - she could see how worn out I was and that I was running on empty. I described how I was feeling - the feeling of being out of control and completely restless, the fear of what could still happen, my obsession with trying to do it all and the fact that it was just not working. She actually understood me and the person I am. She knew that I was just not one of those people who could easily prioritise mysef and my health. No matter what I had been through, I would still try and do everything like I had done before and if not try to do even more. I talked about my obsessive need to try and make up for lost time despite knowing full well that I couldn't fit 6 months into the last 5 years that I felt had been taken from me. And the feeling of guilt that despite having been through two near death experiences, I still didn't "get it." That is the problem I find - I am very good at articulating how I feel in very open and honest ways and using fancy terms to describe what I am going through like PTSD, anxiety disorders, catastrophic thinking, etc...and it gives people the false impression that I am completely in control of myself and my life. The truth is that I am not. I am killing myself at work and doing so much more then I should be because I am so desperate to feel like I am contributing and adding value and because work is actually a very big and important part of my life. But on top of that stress, I also worry about things like a bump in the night and have been known to go upstairs and check multiple times in a night. I get scared when my husband or daughter goes out alone because of the fear that something might happen. I make decisions based on fear every single day. I get angry when people dont stay in touch yet I simply dont have the energy or concentration to be in regular contact with family and friends and I feel so guilty about it. And I push through the barrier of exhaustion many many times a day. When you list out those things suddenly it doesnt look like someone who is in control of things at all.
That is the thing with cancer that is often overlooked. We are so well looked after during treatment and we exist in soft cocoon like structures that protect us from the harshness of the outside world. People excuse our shortcomings and no one expects anything from you. Your focus is to survive and that is all. Everyone around you just wants to help and make things easier in any way they can. And as the patient, you have so much more time to do things that make you happy - be with your friends and those you love, have lazy mornings, do yoga and meditate. Basically it allows you to take time for yourself and it may be the first time in your life that you have been able to do so. There are so many services available for you to use and you almost never feel alone. But what happens when that treatment is over? Who looks after you then? I really think that life post cancer can be a truly terrifying place and there is little thought or effort put into helping people transition back from it. You just dont turn back into the person you were before and in most cases you never will be the same again. In cases of extreme treatment, you can suffer from a lifetime of side effects ranging from the physical, emotional and psychological.Not to mention the fear that it may come back - something I understand all too well. For me - in both of my cancer cycles, I had to proactively seek out help as there was very little offered to me and I felt like i had to navigate this road I had never been down mostly on my own. Often times, I had to convince mental therapists that I needed help dealing with post traumatic stress and that my fears, hypervigilance and anxiety were hindering my day to day living. My transition back to work was also pretty much lead by myself as I navigated the choppy waters of being the woman who had breast cancer...again. No one knew what my capacity was and many were clearly uncomfortable being around me or blurted out utterly innappropriate things across the salad bar at lunch. It was awkward and difficult as I tried to figure out what my role was again and how I could once again feel like I was contributing towards something because no one wants to feel like "dead wood." It can be really hard to try and juggle all these things yourself especially as you continually worry about that next scan and what will come of it. Because despite a huge victory, I know, my doctors know, my husband knows that we are so far from out of the woods and we are still dealing with some less then ideal odds. I live every day with that uncertainty. I did tell my doctor yesterday about that fear. How I am working so incredibly hard to build a life up again for the second time yet am continually thinking of what will happen if something goes wrong with the next scan in the summer. It is exhausting having to keep building, to keep going. I kind of think of it like when you build a sandcastle too close to the waters edge and every time the tide creeps on up on you and washes your castle away. But unperturbed, you begin to build it again and hope that this time you will have judged a safe distance. I feel like I am on that beach sweating and swearing my way through a second attempt at building the best and brightest castle that will stand for a very very long time. As i have mentioned so many times before - you just have to hope and never give up in this cancer game no matter how tired and frustrated you get. My castle will rise again.