Cindy Robillard Barka posted this in a facebook group today and she has allowed me to repost it here. What’s it like to live with MBC? She says it so well….
This isn’t a rant so much as a group of random introspective thoughts coming together hopefully in some form of cohesion.
I read a lot, and I read a lot of cancer pages, comments and life stories especially here online. There seems to be an underlying need to glam up even the most dire of stories. “While single mom Sadie is suffering with multiple fractures and a fight with the provincial government over access to drugs she lives a full life or Maria is not defined by cancer she’s taken up skydiving and started her pilot training.”
Chances are Sadie’s full life is full of mundane things like struggling to look after her kids on days when she’s exhausted or wondering how she is going to pay hospital parking again. Yet, these everyday occurrences are glossed over with the fact that she volunteers once a week or took a trip last spring. That’s a lot of hours of living with cancer’s impact in between her “full life.” Setting out to achieve life goals, while very admirable, in a short and hurried period of time, is the epitome of being defined by cancer. Who else has to, wants to, needs to, achieve so much with a doomsday clock ticking wildly in their ear?
So why do we still feel like we have to achieve when we have metastatic cancer? It is very likely that if you have metastatic breast cancer you are a woman and as such the societal norms we see in every day life still impact you. There’s a desire to be a good and present parent, partner, sister, aunt, daughter or even patient. Not to complain in mixed company (those living with metastatic cancer and those without) because you don’t want to draw too much attention to yourself or become the Debbie Downer at the party and heaven forbid become the object of pity. (Pity versus compassion is another story for another time.) Not to mention that tick tock, tick tock. Suddenly all the “I’ve always wanted to” become “you better get to that” before it’s a, “never going to be possible.”
We also carry a burden of being “fine” because to truly be honest we would say I’m not well, I’m tired again or I’m still tired. I’m in pain both physically and emotionally. I don’t want to have a positive attitude and shove your article about a new cancer cure up your ass. Don’t you think I’m following every angle? I’m angry and I hurt. I hate that friends say stupid things in the hopes of being supportive. I hate that your, “how are you?” feels like an intrusion into my inner self. I have nothing to look forward to except this getting progressively worse and the things that once brought me great joy have faded. Instead we say “I’m fine” because having people avoid you, interrogate you or not invite you feels worse than saying “I’m fine.“ (I hope we all have a support that doesn’t make us feel this way.)
The isolation of cancer builds as acquaintances, friends, family, colleagues, former sport team members fade away after weeks, months and years of this disease and it becomes disheartening. ‘I’ll call you sometime’ or ‘we should get together’ or better yet, ‘thinking of you’ become pat phrases and yet you never quite become inured to the pain because those phrases flash a light into your cancer isolation.
If you’ve been fortunate or unfortunate enough to live much longer than expected you remember every time you’ve asked for help, for a drive, for company and you start to worry about the toll your illness is taking on those around you. I can’t drive to my appointments this week, I don’t feel up to cooking, I’m in pain, I need emotional support again, I have nothing left inside to give this week, I know I was fine an hour ago when we made plans but I’m sick now, saying these things again and again over the years becomes a silent burden that you know you are imposing on others whether they say anything or not. You feel it.
I’m strong, I’m brave, I’m a warrior…NO, I’m not facing this with courage I’m facing it the same way I faced every other obstacle in my life. I’m still me. I didn’t suddenly put on my big girl panties, I’ve always worn them. The “challenge” of somehow living and not just existing with a death sentence isn’t brave it’s called living. I don’t want the burden of being “strong” because it’s a box I choose not to live in so that you might feel comfortable with the downs of my illness.
Struggling to get a diagnosis, make decisions, track down medications, advocate with insurance companies, deal with side effects, negotiate finances, take care of family, deal with pets, keep house, get groceries, the overflowing sink, the sick family member all seem to have a cumulative weight when you have cancer. Some days and sometimes some weeks, all the little things become an obstacle to surmount. Nothing is easy. Doing dishes with a fractured pelvis. Making numerous phone calls trying to coordinate appointments while your stomach is roiling. Tracking down prescription refills for the 50th time in seven years. We understand what, ‘I’m tired means’ even when you just woke up.
We straddle a very uncomfortable place where We have to take advantage of every moment and yet plan for a possible future.
Do I spend the money and enjoy today or save and maybe buy something nice next summer? Do I indulge and eat the cake and pizza or do I abstain and think about the impact on my health? A friend recently said to me, “I thought I had more time” just before she passed. When this disease comes for you, despite it lurking for months or years, it can come fast. We’ve seen it over and over again and so we straddle.
Connie's Breast Cancer Journey 