Tuesday, 2 October 2018

Back to the Bell & a Dose of Reality

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.

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?


  1. Judit! Thank you for your blunt and honest post! I will not even pretend to know what you have or are going through in your life. I will however continue to read your blog. You are kinda like Ann Landers, but meaner and sassier! haha. You have taught me a lot about life and living. I may not really know you that well, but I am hooked on your raw and real views on life and living with MBC. I admire you, look up to you immensely. I want you to know that you really have had an affect on me and even posts like this make me stop and think. Thank you for being you!

  2. I am glad you wrote this post. I didnt ring the bell when my treatment ended because I didnt see a bell and no one said anything. I would have without giving it a second thought. I was so happy to be done with treatment. After reading your post and thinking about what you said, how rude that would of been to ring that bell in front of others who never would get the chance. It’s like sitting in class when we were kids and seeing birthday party invitations being passed out to the special kids, and not getting one.

  3. This is a profound read. I want to be this survivor you speak of but reality is TNBC has a high reoccurrence rate in the first 5 years after treatment. My stage 3C diagnosis doesn't let me relax. I was one slippery cell getting past all 13 positive lymph nodes from stage 4. I do live in 6 month stages of fear. I want to hope for that 5 year finish line but who am I kidding? I'm no more special than you or any of the other MBC people. I'm a survivor in limbo. I didn't want to ring the damn bell because what's the point? I didn't want to ring the damn bell because I lost loved ones to this bitch cancer. I didn't want to ring the bell because I was finished with them pumping me full of poison but I was still very sick. Let's lose the bell.
    Maybe a big smashable cancer sign and everyone can just give it a good smack.

  4. I would never have thought of this, when my sister finished chemo I think we were the only ones in the clinic. But the moments leading up to that were full of tears. She didn’t want to go to clinic, and now I can only think of what it’s like to drag yourself there when you know you have to keep going as long as you want to live or as long as it’s working. Thanks for always adding perspective, and it’s impressive they found a statement to quote without profanity. But I love the swearing! And I agree with the poster above, maybe we can make something to smash

  5. Judit, I have been reading your post for a while now and thoroughly enjoy all your honesty and heartfelt words about what it really feels like to have this disease. I, myself, was sitting waiting to get my blood drawn, and the bell went off yet again. It is almost has if it doesn’t stop ringing in my head even though it had stopped five minutes before. I have never rang that bell and never will. I, too, am living with metastatic breast cancer and this is one of the best written entries in your blog that really was profound and I can tell you that you just voiced what all of us living with Mets have felt every time that bell rings. Thank you for being our voice!

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  7. I just discovered and read your blog as it closely mirrored the experiences of an old childhood friend who had MBC. I appreciate the honesty, the information, the wake up call to those of us with good health and the reminder to be e grateful for each day. Your blog is so many things - an awakening to those of us outside the MBC world lulled into the false sense that breast cancer is fairly minor and curable, informative about treatment - it is motivating for everyone to be patient with each other as what we see is not always accurate of what a person is going through. Could not agree more about people opening their eyes to what is truly important in life (and not endless social media posts about food and minor inconveniences). In short, thank you. Carry on the fight. There are many who stand behind you - including those you do not know.

  8. I wonder who's in the more "enviable" position the individual diagnosed as "Stage IV from the get go" who may have endured numerous rounds of the "poison" or the chemo and some of the "burn" or the radiation and possibly none of the "cut" or "slash" or surgery or anyone at an earlier stage of BC who went the "whole 9 yards" with the "cut or slash, burn and poison" only to end up as "Stage whatever with lung, liver, bone or brain mets." I wonder what the "early stagers" would think if this scenario were to happen with the "Lone Ranger" theme cued and some oncologist like Dr. Stewart or Dr. Willem - Henning rushing into the room with an invite for their 4th stage patients to some clinical trial for some more "cutting edge" treatment that would possibly help us "kick the butt" of Metastatic Breast Cancer once and for all............................. I don't think that would happen but a fellow MBC'er could dream

    1. I'm sure the "chemo bell" ceremonies ought to be downplayed until such time that even "Fourth stagers" could even ring it as if to one day say "GOOD BYE CHEMO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! HELLO CLINICAL TRIALS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"