Here I am four years after writing a
post about the chemo bell writing again about that lovely, shiny
ringer. Recently, the discussion around this bell came up on
Twitter and I wanted to once again discuss the opinion I have around
it, along with many others with MBC. This is my personal opinion. I
am all for celebrating treatment completion, and by all means give a
certificate, a pin, or anything to mark that monumental day. If you
are one of my early stager friends and thinking “oh lordy is she
referring to me in this piece?” If you have enough insight to even
think that then you are most definitely not one of these people so
don't, for even a second, worry about that. OK, now that we have
established that, I want to do my best to try and EXPLAIN why this
bell bothers me still and please try, for the love of God, to just
put yourself in the shoes of someone who is living with an
advanced/terminal cancer diagnosis. Heck, some people with mets like
the bell so by all means, but then there are others who feel as I do
about it and since this is my blog I'll express my thoughts on this
once again:). OK, you got your empathy shoes on? Here is my own
personal why...
The chemo bell is literally just a bell
that individuals ring victoriously once they have completed their
said course of chemotherapy treatments. Once they are all done they
ring this bell with such happiness and emotion. This bell is
typically found at the nursing station, and everyone celebrates with
smiles and applauds this victorious milestone. You did it!!! Now
before you get nestled into your empathetic shoes, I want to make
sure I make myself clear: I wish every single person who has ever
rung or not rung that bell to remain cancer free. To move on with
their lives and find joy, and beauty, and all that good shit for
eternity and never ever have to face a metastatic recurrence, or
incurable diagnosis. Got it? Good. Now with that out of the way, I
will speak about the metastatic community because we hear the
survivor stories. All. The. Time. Firstly, metastatic cancer makes
everyone uncomfortable and gloomy because it is the worst case
scenario. We are viewed as the Eeyore in the infusion room – yes,
I'm becoming philosophical here and referring to Winnie the Pooh. And
guess what? It is bloody terrible!! I'm not going to sugar coat it.
NOPE. The problem is we have become a society about comfort...about
always celebrating the good, and showing the triumphs of overcoming
illness; specifically in this case cancer. Unfortunately, what
becomes sadder is many don't overcome or survive this disease and
that's not due to any fault of the individual. It isn't something
they did or didn't do. It's quite simply because it's a disease that
does whatever the hell it wants to whoever it wants. We can't
meditate, eat vegan, run a marathon, or do anything ourselves to stop
our rogue cells from killing us. I'm sorry if any bubbles burst with
this news flash...reality can be a tough pill to swallow, but it's
still reality which means it happens, therefore we MUST TALK ABOUT
IT.
Now you might be wanting to know, what does this have to do with the bell?? I have reached my peak limit in my life of constantly trying to make others around me comfortable. Since being diagnosed with a metastatic recurrence I have seen time and time again just how uncomfortable I make others, mainly others who have had early stage breast cancer, when I note I have MBC. I have gone from light hearted conversation prior to them realizing I have stage IV cancer to complete silence. I have hair after all and I'm young-ish, so I must be in peak, optimum health (Insert face slapping emoji here...actually I would rather have an emoji of me slapping with a fly swatter the next person who has such ignorance to think that hair=good health). People stop talking and walk away. No jokes. We have become a society so knee deep in inspirational quotes and looking on the bright side that we do not acknowledge those who are in the depths of complete fucken despair because we “just can't think like that.” Gotta stay positive...smile...I'm a survivor. I'm sorry it's hard to move on with life, but do you know what's even harder? Having to fucken actually live with cancer until it kills you!! Now try to envision being on che-
motherapy
for the rest of your life with zero expectation of it curing you, and
just waiting for the other shoe, or atomic bomb, to drop on your
world, only to blow it up further. No reprieve. Just trying your
absolute fucken hardest to live the best life humanly possible when
the side effects from treatment or the cancer itself are robbing you
of the ability to actually feel good. Or having to travel and use
your life savings to enroll in clinical trials for the slim chance to
extend your life by mere months because you are simply so damn
desperate to live. We can't mentally try to move on and the
uncertainty from having scans every few months is by far the biggest
mindfuck, cluster of stress, you could never even remotely fathom.
Why? Because you could never even remotely understand unless you too
are living it. The stress I experienced with my early stage
diagnosis was the tip of the iceberg compared to the stress I live
with since being diagnosed with MBC. Stress with MBC is stress
induced by reality, whereas the stress I had with my early stage
diagnosis was stress induced by my fear of the possibility of what
else may happen. I was afraid of getting mets because then I would be
living with the reality of what I feared the most. This disease isn't
about our breasts. The fear that comes for me is the fear of
suffering and death. What I have seen with my own eyes watching my
friends die one after another, after another, after another... Where
the bad days start to outnumber the good. Can you see the difference?
I have tried SO hard to not make others
uncomfortable, but I have now learnt that by doing so I am only doing
a disservice to myself and to others who truly need the most comfort,
empathy, and support. Those who will never complete treatment. Those
with MBC are typically shunned at support groups because they are
what everyone fears. To me the bell is a way of screaming “I am OK,
treatment is done, and I have my life back!!” Great. For you. Have
you spent a minute looking around the waiting room in your cancer
center? Have you taken a minute to look around your infusion room? Do
you know how many of these people are simply trying to extend their
lives at the expense of horrific side effects you couldn't even
comprehend to simply live a little bit longer? When you ring that
bell, it reminds those of us in treatment forever what will never be.
How unlucky we truly are. We get to watch you and reminisce of all we
have lost, of all that will never be, and of just how different
everyone in that infusion room is. We are not as lucky as you ringing
that bell.
Let's try and bring some perspective to
this. If you found out your loved one was in a car accident and you
rushed to the ER, walked into the trauma bay and learnt your
loved one was going to be OK with only minor injuries sustained, BUT at the same time there was a trauma patient in the bed next to your
loved one, with only a curtain separating the two, and you could hear
them trying to desperately resuscitate this individual while their
loved ones looked onto this dire situation. Would you ring a bell in
the trauma bay and have a dance party simply because your loved one
survived and could move on with their life if they so chose to??
Ummm. NO, unless you are a spineless, mean, and evil person!! Truly,
how insensitive and inappropriate would that be? THIS is what it
feels like to many who have incurable cancers sitting in the
treatment rooms while someone who just had better luck then you, for
now anyways, celebrates loudly and publicly. Why is cancer so
different? Instead of trying to pretend anything good came of this
disease, why not acknowledge that we need to do better.
Those with advanced cancers always need
to consider and make those around them comfortable. Not for
themselves, but for those around them. I think it's time all people
with incurable cancers stand up and start changing the conversation
so they can become heard, so that they don't simply become further
isolated and shunned. Do you know how heartbreaking it is to hear of
MBC patients attend
support groups only to become further isolated
because nobody else in that room could relate to their stage IV
diagnosis? People act as though you have an infectious disease that
they too may catch from you, but they're more afraid of how it will
make THEM feel. Pop an ativan and listen up ladies and gents!! To
hear of a newly diagnosed woman with MBC, in tears, getting escorted out the
back way after a surgical consult so she wouldn't need to pass the
women in the waiting room due to the realization that her
breast cancer had spread beyond the breast? This wasn't to make the
woman with the stage IV diagnosis comfortable, but to make those
early stage women in the waiting room not feel uncomfortable by a
woman in tears because of her very uncertain future that suddenly
became scarily finite. YES, this is NOT OK and yet it continues to
happen!! Does anyone see what I'm saying? We value, or seemingly
don't care about the most vulnerable and those inflicted with the
absolute most dire prognosis. This NEEDS to change. We are leaving
those that need the most help stranded and alone while we continue to
listen to the “survivor” stories. We need to hear ALL the
stories. When mass amounts of people are continuing to die from this
disease, we need to hear the other side too. We need to hear from
these men and women. YES, men get breast cancer too so we need to
include them in this as well, along with the spouses who have lost
their loved ones. Their stories are not any less important than those
of survivors. We will never solve this if we don't recognize that
there are two very different sides to this and right now the stories
are skewed in one direction: one towards survivorship.
support groups only to become further isolated
because nobody else in that room could relate to their stage IV
diagnosis? People act as though you have an infectious disease that
they too may catch from you, but they're more afraid of how it will
make THEM feel. Pop an ativan and listen up ladies and gents!! To
hear of a newly diagnosed woman with MBC, in tears, getting escorted out the
back way after a surgical consult so she wouldn't need to pass the
women in the waiting room due to the realization that her
breast cancer had spread beyond the breast? This wasn't to make the
woman with the stage IV diagnosis comfortable, but to make those
early stage women in the waiting room not feel uncomfortable by a
woman in tears because of her very uncertain future that suddenly
became scarily finite. YES, this is NOT OK and yet it continues to
happen!! Does anyone see what I'm saying? We value, or seemingly
don't care about the most vulnerable and those inflicted with the
absolute most dire prognosis. This NEEDS to change. We are leaving
those that need the most help stranded and alone while we continue to
listen to the “survivor” stories. We need to hear ALL the
stories. When mass amounts of people are continuing to die from this
disease, we need to hear the other side too. We need to hear from
these men and women. YES, men get breast cancer too so we need to
include them in this as well, along with the spouses who have lost
their loved ones. Their stories are not any less important than those
of survivors. We will never solve this if we don't recognize that
there are two very different sides to this and right now the stories
are skewed in one direction: one towards survivorship.
As screening techniques become more and
more sensitive to malignancies, or potential malignancies, cancer
rates continue to increase. We need to recognize that many will never
get a clean bill of health, and that those who are long term
“survivors” got there due to current, scientifically proven,
advancements in therapies and sheer luck. I'm not going to get into
the depths of survivorship and people assuming it was their
alternative therapies, coffee enemas, juice cleanse, mindful meditation, and vegan
diets that got them there. You know why? Because I have known far too
many young women who did all of these things prior to getting cancer.
And yet they still got cancer. And died.
I want everyone to become a long term
survivor. I want everyone to never hear the words; “You have
cancer.” I want everyone to find joy, fulfilment, love, and
happiness in their lives and to simply live. But I know that that is
not reality as much as I would love it to be. With that, I am simply
asking people to become mindful to what is happening around them.
Next time you step foot in a cancer center or an infusion room, look
around. Many people get these therapies for palliation to simply
extend their lives. They will never finish treatment. Their life will
be taken by this disease. If you are one of the lucky ones who gets
to one day walk out of that cancer center and are given the
opportunity to LIVE, please recognize the unbelievable gift you have
been given. Please, I understand how hard it can be to move on (I was
one of the early stagers initially before having my cancer recur),
but at some point life becomes about choices. You can choose to make
your life whatever you want it to be. Don't allow fear to squander
the potential for a beautiful life. Pick up the pieces and move the
fuck on...those of us with metastatic disease can only dream of such
a luxury, and yet we watch so many become debilitated by fear. Fear
won't reduce your chance of recurrence. Fear won't add any value to
your life. Fear will slowly erode the beauty that exists right in
front of you. I don't know what tomorrow will bring, but I do know
that there is more to life then just me. Therefore, every month when
I go get an infusion I thank my lucky stars that I can still go back
every month, and I am alive. If you're a cancer survivor and are
still reading this, thank you and I truly wish you good health. Go home, have a party, and celebrate your
good fortune...just always remember how immensely lucky you are
compared to those who have had their entire future stripped away from
them. If you can't find a way to move on with your life, talk to
someone and seek professional help. Mental health is an often
overlooked component upon treatment completion and what these
individuals need is not to continue seeing their oncologists but to
get referred to the proper mental health professsional in order to
help facilitate a plan to move on, to have the most fullfilling and
meaningful life possible post-cancer. You HAD cancer and need the
proper facilitation to not continue to live in agonizing fear. I
don't want that type of life for any of my early stage friends.
Ringing a bell won't do anything...it
won't change anything...it won't help anyone...just walk out of the
cancer center and take a breath of that fresh air (well, not right
outside the doors of the cancer center where people continue to smoke
despite it clearly stating NO SMOKING, but that's another post in and
of itself). Now recognize the amazing luck you have to be able to walk
away from that cancer center once and for all. You can walk away...we
are forever bound...do you see the difference yet?
