June 30, 2010

things i wish i knew...

i wish someone warned cancer patients that being a survivor is no easy role to fill. i mean, i know you read about it, but it's not like they actually prepare you for any of this stuff. i'm doing my best learning as i go, but a heads up would have been good. so, for all of you, i have created this list of things i wish i knew...

you will have a high when you're done treatment. that high will last a month or so, and then you'll have a startling awareness that you're living a 'normal' life. it's harder than one may think to adjust to not having a lot of emotional excitement from day to day. perhaps it is the emotional excitement of active treatment, scans and seeing a doctor every other week that distracts us from all the other emotions that we end up processing later. whatever it is, it's an odd feeling to not have that excitement, and it may leave you feeling pretty 'blah' until you adjust.

your hair will not grow back quickly. in fact, it may take a while before you start to see yourself as the person you were before. your hair looks different, you've got scars, tattoos, burns from radiation, weird rashes, maybe a port still, and if you're 'lucky' like me, you've gained some weight. not only has your whole internal self been dramatically changed, but you don't even look like the person you used to be. you'll probably notice it, and it'll probably be hard to handle. accepting you've become a whole new person is a difficult thing to do. just keep reminding yourself that you're a better, stronger and more beautiful person now. you're more you than you've ever been.

it's alright to need help. seriously? yea, i wish i knew that. i've never been good at asking for help, and have always been taught to suck it up and 'make it work'. during treatment it's much easier to ask for help because you're so clearly in the midst of something that everyone knows is really difficult. once you finish treatment, the obvious need for help isn't as, well, obvious. this one i'm really still working on...i need to give myself constant reminders that asking for help doesn't mean i'm needy or that i lack independence. in fact, being able to ask for help when i need it makes me more self sufficient and successful than not asking for help and letting myself spiral into anxiety and stress.

you just dealt with something really significant. i have a tendency to minimize everything...how bad i felt during treatment, how scared i was, how frustrated i get with my body, the amount of stress i'm left with, and how huge it really is to face your own mortality. i've minimized things in order to get myself and others through this...but, really, i haven't done anyone much of a service here. give yourself some serious credit...we all know a cancer diagnosis is one of the most feared things in our world, and you just went through it. once you start to accept how huge it is, you'll be able to normalize your ups and downs...and being able to identify your experience as 'normal' at this point is so therapeutic.

you're not alone. there are 13 million survivors, according to the latest estimates. that's a lot. that means a lot of people have walked in your shoes before you. connect with someone who's 'ahead' of you in their survivorship and let them help guide you through the process. without my 'survivor mentors' i'd be totally lost. just to hear that what i'm experiencing at the moment is normal makes all the difference. and, theres a lot to be said for having those friends who just 'get it'. so, reach out. and if you don't know how to connect with someone, i'll help you.

hopefully this helps someone who's about to enter the crazy world of survivorship. that's not to say that this side of cancer isn't wonderful. it is. it totally is. to be able to look back and realize that i survived a cancer diagnosis, eight months of treatment, and came out in one piece is an amazing accomplishment. and my quality of life is certainly better now...i have a deeper appreciation for every single day, breath, relationship and interaction in my days. but, that doesn't mean that there aren't daily challenges that come along with being a survivor...and that's what i'm hoping to bring more awareness to. i think it's that acceptance of our difficulties as survivors as being a normal part of this journey will help make them a whole lot easier to handle.

and, if it's at all helpful to you, pay it forward and start your own list of things you wish you knew and pass it on to someone who's about to be a survivor, too. one bit of advice at a time, we can make the world a better place for every cancer survivor...and we all know there are many more to come.


  1. Well done Grace! Well done my friend. You write so beautifully. Honestly you are amazingly talented. You're in the trenches and it really is tough right now. Those days are few and far between for me now...and they will slowly begin to fade for you as well. You're spot on when you say no one really gets it but "us". I'm here when you need me...thinking of you always!

  2. One of my favorite posts by you Grace. You should seriously think about posting this one on the boards... it could definitely help a lot of people during those 'post chemo blues' and 'blah' feelings.. when people think that is out of the ordinary and it certainly is NOT.

    I think, even with all the treatment I've been through one of the roughest periods for me was definitely my seven months of remission after ABVD just as you described because of the following feelings. Very insightful.

    Just remember: you're doing your best, (hopefully you REALLY know that somewhere inside you), and you're doing a beautiful job at it.