‘kansər/ – disease; causing the body and mind to adapt, overcome, and embrace change.
Someone who is living with a permanent illness which will impact their “quality of life” will hear this phrase from time to time.
Someone like me who is considered a “palliative care patient,” which is a polite way of saying my disease will eventually kill me, this term gets thrown around a lot, but do we ever stop to think about what it truly means?
I used to just see it as phrase. I used to see many things as “just phrases,” words put together to fill silences in sterile rooms to allow for some sort of relief from the inevitable uncomfortable points of cancer.
Until you live them, you are intimate with each word, and you get to know what each one will mean to you… you get to appreciate what kind of quality you’d like to live, and start to live it.
I am going to share my perception of these words, and hopefully… they will not just be words to you either.
This phrase, “quality of life,” is meant to bring a sense of comfort, a level of respect, a sign that no matter what the cancer is going to take from you – we are going to do our best to keep you comfortable while all of these changes take place, and most importantly… just keep you who you are.
Well, I kinda did.
I think we all do in some respects, and that’s normal. The difficulty is realizing where you can no longer do so, and where you need to adjust your expectations.
I didn’t say give up there, did I?
Time to Adapt
So here comes the hard part, once you start to change… no one but you can prepare you for this.
The next time you hear “You’re so strong!” don’t shy away from it when someone admires your strength. Think about what it means to them, what it means to you, and how you have truly earned it.
So, you start changing and this “quality of life” thing everyone keeps talking about seems like a very far away ideal at this point…
“How am I supposed to have any sort of quality of life when this disease is doing nothing but take take take?
“I don’t even have a life anymore, so how am I supposed to have a “quality” one?”
“Everything I am doing is supposed to “provide me with better quality of life,” but after every procedure I’m left feeling worse and can do less”…
“How am I not supposed to lose hope?”
Fast forward a few months…
My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly “normal” to being completely bedridden for months and needing a wheelchair the rest of the time. That was the most surprising, and still is…
Did I tell you how wonderful it feels to simply be a little more kind to yourself?
After all… how am I supposed to have any sort of life if I am not going to accept the fact that my life is different? Change is constant, and I need to be willing to accept that although my life is very different, it’s mine.
The fact that I wake up every day, is a beautiful thing.
The fact that I have woken up each day with a smile, and gone to bed each night the same way… adapting to each new circumstance, overcoming each new situation.
Most importantly, understanding that even the smallest victories are worth celebrating. Simple joys are to be found and appreciated everyday, because these “small” and “simple” things to someone else… likely mean the world to you.
Remember, although your life is different… it’s your life, and these are the things that make the quality of your living.
Throughout most of my time advocating for my metastatic pheochromocytoma, I’ve chosen to share my own life. My hope is to help others come to the same realizations and learn valuable information about this disease that isn’t available to people like us, without having to also suffer along the way to get there.
Just in the last two months, having another treatment to control my disease has confined me to my upstairs bedroom, I’ve suffered the worst pain so far this disease has given me. It’s made me question my quality of life, since being palliative, I’m supposed to be as comfortable as possible, and enjoy my quality of life. Instead I’ve been writhing in pain, stuck in my bed, unable to leave the upstairs floor of my house.
It made me question… “Now how will we get through this one?”
And we did.
Cancer makes you adapt and overcome.
Months ago, my perception of having home care and setting up a bedroom on my bottom floor?
No way! I’m not doing that! Why would I do that!? Now!? I’m only 25 years old, I’m not putting a hospital bed in my living room, that will never go with my decor! (priorities)…
Remember those simple joys? Small victories? Well this was the greatest joy, a godsend, a massive victory!
I can now see out a window,
I have life fluttering around me,
I can see my dogs run around the house,
I can see my husband cooking in the kitchen,
I could choose a very pink blanket for my new bed,
I can walk to the kitchen and serve myself a drink or snack when I’m feeling well…
I was able to have a Christmas tree!
I can drift off to sleep right in front of my fireplace… watch the snow fall…
That smile? It was fading slightly for the first time when I was confined upstairs for all those days, it was still there… but it just wasn’t quite as bright.
That’s what quality of life is.
Those aren’t just words, this is my life.
And this smile? It’s brighter than ever now…
You, too, can adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to remember… your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer.
Just remember, there’s no right or wrong when it comes to your life — as long as you’re the one who’s smiling at the beginning and the end of it.
Follow this journey at Pheo vs. Fabulous.
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