12/31/15 - Well, it’s New Year’s Eve as I write this, and boy am I glad to see the back of 2015! When I spoke with a counsellor soon after diagnosis, she told me she often sees patients return towards the end of their treatment, and it’s only now that I’ve gained enough insight to understand why. The past few weeks have been an emotional roller coaster, as I cope with the anxiety & fears of a possible recurrence, wondering could this be my last Christmas & if this is just the calm before the storm. I realized the other day that I pretty much jumped straight from physiotherapy into socializing three times as much as I’d normally prefer out of fear. Fear that it’ll come back, and with a vengeance. Fear that funny little lump on my elbow that i never noticed before is an early sign of METS. Fear that little dry cough is also a sign of METS. Fear that I won’t be around in ten years.
Adding fuel to the fire, a fellow survivor found a research-based nomogram by the Memorial Sloan Kettering Cancer Centre that shows estimated survival rates specifically for liposarcoma patients, and it appears that resident physician (the one my oncologist initially had answer my many questions because he was strapped for time) may not have been as forthright about survival rates as one would expect. Remember, this is the resident who gave me my grade instead of my stage, plus she’s the one who told my mom & I she’d be right back but then never returned! So, needless to say, I don’t have a lot of faith in anything she’s told me. But back to the nomogram… It made me realize, I probably don’t have as much time left as I was originally lead to believe. I mean, I pretty much figured that anyway due to my high (>25%) round cell component, but it appears the survival rates for even those with as little as >5% round cells are reduced. And while the realist in me knows I could always die of something else, like a car or a plane crash, it’s still quite daunting realizing that if nothing else takes me out, the cancer most likely will, even if it’s years down the road. The chances of a recurrence or distant metastasis are fairly high. So, even though I’m clear now, it could be waiting in the wings & show up in my lungs a few years from now. I can deal with that, but I just want the truth out of my medical team. So, I definitely plan to show my oncologist the nomogram when I see him in March. I realize some people wouldn’t want to know, but being single without a spouse to fall back on, I need to know how I should prepare for the future. For instance, is retiring in 20-25 years even a realistic possibility, or should I be saving like someone in their 70’s who’s likely only got an average of 10-15 years left to live?
Another thing that’s knocked the wind out of my sails lately is “survivor’s guilt”. Last week there was a news story about a 22-year old woman that lost the love of her life a month earlier when he passed away suddenly of unknown causes. Meanwhile, she, herself, was dying of stage four osteosarcoma in her leg & her last wish was to make it long enough to be able to hold her yet unborn baby. Well, she made it, as her son was born Christmas day, but that baby will never know either of his parents. Yet here’s me with no children, other than the four-legged kind, and no significant other, yet here I sit cancer free. Don’t get me wrong, I am grateful, but what the hell is the universe thinking??? If I wasn’t an agnostic-atheist, I’d swear the angels got our paperwork mixed up! Fortunately, I was quick to reach out for support from the online liposarcoma group I belong to, and it appears I am not alone with this paradoxical range of emotions. This knowledge alone brings me comfort & takes the edge away from this whirlwind of ups & downs I’ve been feeling lately.
Offline, I've tried sharing a bit about these post-treatment emotions with a few close friends but it was obvious they just didn't get it. After all, how could they? Only those who’ve had cancer themselves can truly understand. It's for this reason, I’ve noticed myself starting to hold back with friends and family about how I’ve been feeling - quite the opposite to when I first began my journey. They have moved on now that I am cancer free, but for those of us who’ve faced cancer directly, “cancer free” is a bit of an oxymoron, because once it’s touched you, you’re never truly “free”. It’s always in the back of your mind, and there isn’t a day that goes by where you don’t think about it, even if it’s just briefly. If forever changes your views on life, for better or worse.
Speaking of holding back, I've decided to be more selective with whom I tell in person about my having had cancer. i have lost count of the number of times I’ve heard “Oh…BUT you look good!” after telling someone I’m a cancer survivor when they ask about my leg. I’m not a small girl, so although I lost weight due to stress & lack of appetite, I don’t look like the stereotype people have of what a cancer patient should be. On top of that, despite loosing a lot of hair, I never did go completely bald. It just looks like I got a major haircut. So, to anyone reading this who’s never had cancer themselves, please note that what we as past & present cancer patients hear when you tell us “Oh…BUT you look good...” is “Oh…you don’t LOOK like you had cancer!” Seriously people, stop & think before you open your mouth! :p On the other hand, I’ve met a few fellow survivors in the real world by being so open, so choosing to be less so is bit of a double edged sword...
Last but not least, the thought of returning to work…or in my case, looking for a new job for the first time in over a decade after being laid off sent my anxiety so sky high that I’ve decided to take one or two more months to truly relax before starting my job search. Sure, some people might think being on medical leave for eight months would be enough of a break, but it’s been anything but relaxing. So, I’ve decided to be good to myself & give myself this time to properly unwind. For one thing, doing so will help me to be more resilient once I do return to work, and it’s not like I’ll ever get this kind of free time again, unless well…you know, but then that will be anything but relaxing! So, the first week of 2016, I plan to spend in my pyjamas! :p Then I plan to continue my endeavours of learning the ukulele & lose myself in my e-books. I also want to work up to riding my elliptical for five hours a week. Right now I’m at three hours a week. I want to find that wonderful balance I once had between my introverted “me time” & hanging out with friends. I'd also like to do a bit of soul-searching as to what I want in my next job & employer. While I’ll likely end up in a similar line of work, I don’t want to just settle for the first thing that comes along. Life is too short to spend it working for a company that makes you miserable. Most importantly, I plan to enjoy this extra time with my fur-kids (my dogs), as one of them has a health condition which will eventually end his life.
Still, even once I do resume said job search, the job market right now in my province is pretty tight. To say we’re in a recession here would be an understatement. So, whether I like it or not, it could be quite a while before I manage to return to the workforce. This presents another challenge, as many other survivors I’ve chatted with online say returning to work really helped. But what if there’s no work to return to? I might look into volunteering in the spring or summer if something still hasn’t cropped up by then or those elusive tour dates I’ve been waiting for still aren’t announced, but for now…pyjamas! Yes, pyjamas! ; )
*[NOTE: Post title inspired by the Placebo songs "Come Undone" & "H.K. Farewell", which can be found on their "Battle for the Sun" & self-titled debut albums respectively.]
