I’ve been quiet on my blog lately. It doesn’t mean I am not writing or thinking about our cancer mess. It certainly doesn’t mean that I am feeling so great that I don’t need to blog anymore. Nor have I decided to look the other way. I don’t think that will ever happen. One thing I can say is that I have become tired and disappointed. There’s a lot on my mind and a lot of it isn’t pleasant. It’s partially out of fear and frustration, but also out of anger.
I am feeling very angry about so many things. Injustice. Ignorant people. The fact that I will never be done with cancer. Feeling pressured — by time, people, expectations (including my own). Feeling out of control. And so many other realities about being a cancer patient.
It’s as if I have reached a point where I have decided to switch pills and momentarily take this one instead:
Recently I’ve been re-reading my blog. I have no regrets about the things I’ve shared here. It has helped me, mentally, to express myself, and I hope that you too have found some comfort in knowing you are not alone in your suffering and pain.
What is my goal, really, when I write about breast cancer and our culture? I’ve already said it’s therapeutic for me to express myself, and I do appreciate sharing a connection with other patients. But my other goal has been to try to educate and influence people — to help them by trying to create change so their future cancer experience is better than mine. But despite all my efforts — and immersing myself in the pain of dealing with these topics in writing — I don’t feel that people are paying attention enough. When I see them look the other way, I get discouraged to continue. (Receiving support from doctors and through treatments is very important, and I’ve gotten that, but I find survivorship carries a different set of challenges and it’s important to receive support during this stage too.)
This has been especially disillusioning and hurtful when some of the people looking the other way are those who are supposed to be close to me.
For instance, I’ve been thinking about all the requests I’ve shared on social media and on this blog asking friends and family to contribute to research — and most people have ignored my requests. My most recent request was related to the “#KissThis4MBC” campaign, where Novartis is donating $10 to metastatic breast cancer research for everyone who shares a photo of themselves with the hashtag #KissThis4MBC. We all know how much people like to post pictures of themselves on their social media pages, so I thought this would be a hit. Easy to do. All I asked friends and family to do was to include the hashtag, and yet, less than 10 people did it out of hundreds — and this was mostly only after I started tagging people and asking why they hadn’t done it. (I know, I know, some could have missed my post. Yet when I post a new picture of myself or a cute video, tons of people responds with a “Iike.”)
My post didn’t even get acknowledged by most people, not even when I asked twice. So as I was staring at my screen, getting ready to post my own photo, I decided not to bother (at that moment).
I’ve been thinking about who I am really helping by advocating for change and more education. The truth is all patients who advocate are mostly helping those who have NOT been diagnosed with the illness yet. We’ve been through the shitty experience already. The damage has already been done in our bodies and in our minds after cancer. A lot of the progress will help those who will be diagnosed in the future. So, that’s reason for me to not stop advocating. I would like to contribute to change in any way that I can. I know that my experience was easier than it would have been, let’s say, 20 years ago, thanks to those who advocated for me before my diagnosis.
Yet, it feels so disappointing not to get the engagement you want from those closer to you. I’ve already accepted the fact that most people don’t want to deal with cancer unless they absolutely have to, but I expect more from those who know me.
People talk about how they don’t know what to do to help cancer patients. They say that they often feel helpless. But then, when a simple opportunity presents itself, they still don’t do it. (For those who did share their photos, thank you!) I get that people have a life to live (so do I), but my request only took a minute to acknowledge. And it’s for me, your friend/loved one? Regardless of what your beliefs are — such as “they’re hiding the cure” or “this is a bullshit PR campaign” (it isn’t!) — do it, because this is our hope and the act of participating will mean something for everyone, including you.
Why won’t they do it? What is the reasoning? I really want to understand so I can accept it and move on. Are people so petrified of the word “cancer” that, even when they read it, they immediately look the other way without realizing they could be contributing to making things better for someone? I can’t help but to take it personal. It makes me feel like they don’t care if I die from this disease.
I’ve been thinking about this worst-case-scenario. I imagined people writing on my social media channels, saying things like “you will be missed” or some other shit. And it made me even angrier. I thought “shut the fuck up” (something I would say from my grave, if it were possible); “you should have shared that photo on your profile like I asked you to. There would have been zero inconvenience for you, because you’re constantly on social media anyway, posting photos of every move you make”. All you had to do was add the hashtag, #KissThis4MBC. That’s how you show you care, not by writing on my wall when it’s too late, or sharing a pink ribbon – that won’t do a thing!
For a while now, I’ve been feeling like I am locked in a room with a group of people going through the same frustrations as I am, screaming for acknowledgement, and no one hears us — until they have to enter the same room themselves, where they too won’t be heard. And this is why we are where we are today when it comes to cancer research. Makes me also question for the millionth time all this “awareness” that Pinktober is supposed to bring.
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1) Whether you’ve been diagnosed or not: Have you ignored a cancer-related social media message or article message shared by a loved one who has the disease? If so, why? (No judgments here)
2) For those who have been diagnosed: Have you taken the “FUKITOL” pill too? (possible diagnostic reasons: sick of a job or a relationship)?
3) If you are a blogger or any other type of advocate, do you often feel unheard? If so, how do you cope?
The small c 
I’m sorry you’re feeling frustrated and demoralized. I think that our “audiences” sometimes will let us down. It’s important to note that with the way social media algorithms work, one cannot always be sure that our messages are being seen. When I have been fundraising for a cancer-related cause, I have found it essential to post & re-post the message every single day. It’s the only way to *maybe* reach everyone.
That said, I did a fundraising event two years in a row, the first year a grueling bike ride which was just a year after I’d dealt with brain metastases & gamma knife surgery. I raised a LOT of money, because the story was inspirational. This year, we switched to a 5K walk instead of the bike ride, so our kids could attend. Our fundraising dropped to a third of the amount we raised the year before. Did people not care as much because I wasn’t quite so close to death as I had been, or.because I wasn’t busting my butt on a bike? Were there too many competing demands on donations given the current presidential administration and the need to support organizations that protect the most exposed? Who can say?
I absolutely take Fukitol on a regular basis. It’s my favorite accompaniment to a beer or glass of wine. Most often related to my attempts to lose the 25 lbs I have gained since starting treatment.
I did send an email this week connected to an advocacy initiative that is important to me, and got a positive reply, so that was encouraging. (But not every week is like that.)
Sending you the strength to endure & a refill of Fukitol! 🙂
Thank you for participating in fundraising events and I am glad you received some support during those periods of your cancer experience. Never thought of re-sharing my messages multiple times as I try not to overwhelm people, but I might try that in the future.
I don’t share my blog on my personal social media pages, because 1) I know most people don’t want to be reminded of mortality and 2) I don’t want to have expectations and be disappointed. I don’t even engage that much on my personal pages, but the few times a year I share something, it’s because it is important. And I do phrase it in that way. I don’t expect “my audience” to be responsive all the time as everyone has different challenges they are facing and there are so many different important causes. However, I do expect those closer to me to react. I am referring to family and friends I interact with regularly. My intention was not to single out some people, so I kept my post very general, with the intention to have most people pause, to think, including me. It’s important to have a dialogue. I often find that many patients are disappointed, but they don’t always express it, perhaps because none of us want to feel like a burden or like we’re demanding too much. But in cases of research and education, it is important to speak up.
I am familiar with that algorithm you refer to but it seems to only apply to my cancer-related posts, which is odd (and I’ve noticed this for the last 3-4 years which is why I am so frustrated today).
And isn’t Fukitol great? xx
I think for many people, they just don’t feel the immediacy we do because they haven’t faced the disease. Hell, I was probably guilty of this myself in the past. It’s sort of like when someone dies–everyone is there immediately after, and there’s this outpouring of support. But once the funeral is over, people go back to their day-to-day lives. Meanwhile, the loved ones left behind are just as steeped in their grief as before. I feel the same way about my cancer. Once treatment ended and I “beat it,” everyone just sort of went back to normal. Yet I’m still here in the thick of it, and it never goes away for me.
I just think people can be oblivious and don’t understand the fear and the passion for a cure that we feel.
Jennifer, you are using a great example. I do agree that once patients are done with treatments, it becomes easier for other people to move on. And maybe they don’t want to be reminded of it so they choose to look the other way, except this type of behavior delays progress. Hard to influence others, even when they are too close to you. How can we change that? I am trying to figure it out. xx
I’m so sorry that you are having such a difficult time. I know it sometimes feels like no one cares, but It’s not true. There are so many warnings about responding to things promoted on social media and watching out for things that are too good to be true. Because of these, people are reluctant to do anything on social media that they have not initiated themselves.
Joyce, you made a good point. Perhaps I need to be more explicit when sharing these posts. It would also be nice if some people acknowledged my messages or simply asked questions if they were afraid of participating because of their privacy. It’s the “looking away” that really gets to me. Thank you for your feedback. xx
If you are angry that much, dear soul, you need to find help to get de-angered. I’m not going to tell you where to find that help or even make suggestions. But please figure it out and dump all that anger in the trash heap. You have this one life. The past is finished… so don’t even look in that direction. The future is uncertain, more for some than others, and you can’t control that either so don’t get out your binoculars and strain to look in that direction. Just live today. Live with your eyes wide open, not to the travails of others and not particularly to even your own travails. Look to the things that are wonderful in your life, even if it be only the sunshine. And simply be.
Andrea, thank you for your words. I am sorry that I am angry too and that my disappointment has gotten this deep.There is certainly a level of urgency and it is frustrating when many people don’t grasp that. I do try to keep a balance so not to find myself sinking too deep, or at least for too long — it’s a process and each individual copes differently. I’ve learned to accept who I am and allow myself to be. It’s important to allow ourselves to express all the different emotions we feel, especially when one seeks change, for the better. Looking the other way won’t contribute to progress. I just wish more people would see it the same way. Stay well. xx
I’m sorry I didn’t post the picture. I thought it was an instagram or twitter thing.
In answer to your questions.
1 I do pass on stuff that says repost if you love someone with cancer….
2 absolutely! I’m tired of the left overs from treatment! Nerve damage, menopause, hair loss, neuropathy and on and on. Just when I think I have had the last new issue, boom! Something else.
3 before cancer, I did a lot to advocate and raise money. The day Before I started chemo, I got guardianship of my granddaughter with autism. Since then I have been fighting for her! Still a lot to do but it helps to keep me distracted. Besides, she doesn’t have a voice yet. I look forward to helping her find it!
Cindy, I knew that by expressing myself about this topic, many of the people I know would have a reaction, and to be honest, that was my intention. It was meant to start a dialogue because I really wish to understand. And your feedback helps with that. I do expect more from those closer to me.
I am tired of the collateral damage too! There’s always something, isn’t there?
What you do for your grand-daughter is wonderful. I wish you both good luck and I hope you get the outcome you’re wishing for.
Thank you for all your support. xx
I can definitely relate. I do feel discouraged at times and wonder whether I’m having any impact. It’s not often that we can see tangible results from our efforts. I try to remind myself that it’s better to think long term and hope that in sharing our experiences and our understanding about the importance of research we do have impact. As you said, our advocacy really isn’t for ourselves–it’s really about sharing about what our experience has been like and educating to help others. For what it’s worth too, I believe that some researchers understand the importance of getting the patient perspective as they plan their research, and that one of the ways they can get that is by reading patient blogs.
Rebeca, I know it’s discouraging when you’re not seeing the kind of response you hope for. But do hang in there. Your blog is a great resource for anyone who wants to go a little deeper than the “pink culture” stereotypes.
Lisa, you do important work and I appreciate you. And you’re right, changes take a while, especially those associated with culture, so we should probably consider thinking long term. As long as we continue to share our experiences, there’s a chance it would have some impact. Thank you for your support, and please know you have mine. xx
Hi Rebeca,
I hear you. I have lots to say about this, but it’s probably better I don’t say too much. Let me just say, I know of what you speak. Getting people to engage is like pulling teeth sometimes. Disappointment, frustration, anger – those are universal feelings that advocates and yes, writers and bloggers feel. Or at least I sure feel them all pretty darn regularly. And often those closest to us disappoint the most. Just know, many of us understand. Keep being real. Keep being you. And please keep sharing/writing/blogging! Finally, remember you are likely being heard more than you think. Hugs.
Nancy, I know you can relate and I am sorry you’ve felt disappointed too. Thank you for not giving up and for always being an active advocate. It takes work and effort and I always admire those who invest their time doing it. And there are those who contribute in other ways, too — all appreciated. Thank you for your support and please know you have mine. xx
Rebeca, I think a lot of us are just utterly exhausted by the politics we’ve had to endure this past year, and all the implications of them on our personal lives. Honestly, I’m worried about a helluva lot more than cancer these days. And we share a lot of friends in common, which means several of us get multiple requests for fundraising and sharing. So, it may not be because folks are not paying attention to you in particular, at least some of them anyway. It may have nothing to do with you at all, but just being worn out in general. And that’s not even counting all the losses and grief many of us have experienced this year. Yikes. Hugs.
Kathi, I understand. There are a lot of problems we are facing as citizens and it’s all scary. There are also too many important causes — how do we choose what to focus on while also trying to survive? I get that. I was mostly referring to those closer to me. Many of them don’t even live in this country and they are active on social media (even after having a conversation about the campaign they still ignored it!). One of the reasons I felt so disappointed and angry was because I had heard of 5 MBC deaths within one month (some you know of) so I felt hopeless and angry. I wondered why so many people still look the other way considering the # of deaths from MBC and considering their loved one(s) has been affected by the disease. (I know, same old story..)
I am familiar with the exhaustion you speak of because I’ve felt it. You’ve also contributed a lot in a positive way. I am grateful for all you’ve done and for your support. Please know you have mine. xx
1) I love to cheer and be cheered on!
2) I am currently taking the fukitol pill
I didn’t realize it until I read your blog
Exactly what I was doing,
So, thank you!
3) I attempted a blog spot- it was erased
and I don’t know why- my friend kept the blogspot up for me when I wasn’t able to
Now, I just read other blogs and keep a personal journal…kinda on the sidelines I guess
Denise, welcome to Fukitol! Doesn’t it feel great? Sometimes it’s even necessary to take that break, to simply be kind to yourself. To re-charge. (And to vent!) I hope you write again, when the time is right, of course. Thank you for your comment. xx
Hmm, interesting you use the Kissthis4mBC example–I’m starting to think I never understood how that worked. I jumped on it right away–posted a selfie the first day I heard of it, back in Sept because I was under the impression it was this limited time thing. Then I saw this up-sweep of the # several weeks later. I also never understood we were supposed to get our friends to do it? So I never tagged anyone? Guess I didn’t read the instructions well.
I agree with Kathi–there is so much going on, and lately I’ve avoided stuff–political activism is draining my energy lately. But I have to focus on it–my access to health insurance is at stake, among other things.
I also agree with Nancy, have been there, and probably shouldn’t say much–because I could get downright mean if I let myself. I re-share stuff I wrote long ago because the same old shit just keeps coming up. And I’ve definitely put my foot in my mouth with some folks. This is something I’ve been pondering a bit lately tho’. Part of me thinks–hey most people just won’t “get it” unless they deal with the same exact situation (get cancer, or perhaps lose a job or some other political/ social justice thing). But then I think, is this not our job to MAKE people see and understand? In one of the many political-cultural think pieces I’ve read recently, this is exactly the issue that divides our country–we scream at each other in an effort to get “the other side” to understand, then turn around and say “you’ll never understand because you are not in my shoes” (this particularly came up in a few race-related articles or podcasts). This is not an effective way of dealing with issues. So we must keep trying. I guess that is what helps me “cope”.
But then, I’ve been on a bit of a mental break from it all–so, I can’t say I’m doing a very good job! 🙂
I understand, my friend. There’s a lot going on and too many important causes for us to focus on simultaneously. In politics, we have some major problems and they def. need immediate attention as it affects us all. Thank you for doing your part as a citizen and for doing some advocacy in those areas as well.
I think Kissthis4mBC was a good campaign as its main goal was to help those who struggle must because of the lack of research – stage 4 patients. I don’t recall how long the campaign ran for. I should check the status – haven’t seen any posts related to it recently. Hopefully, it was somewhat successful.
And you are right when saying it is our responsibility to make people see and understand, even when they haven’t gone through the same experiences we have – YET (or have been directly affected by the same issues – YET). As you know, our biggest problem is our culture, which can take a while for it to evolve. But we must keep pushing and try to contribute to changes. xo
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Hi Rebeca,
I have indeed taken the Fukitol pill over and over and over again. With cancer came my divorce and getting a new job. It truly bothers me that life will never be the same since cancer diagnosis. Never. Of course, my life before diagnosis was no picnic, but I had some blessed ignorance in the expectation of a long life. Very naive of me, but there it is. Nowadays, I’m in therapy, and that’s helped a lot.
Hi Beth — I am sorry cancer affected so much about your life. It’s what it does best, isn’t it? It takes so much from us. And yes, not being able to go back to that level of innocence we once had makes survivorship very difficult. I too see a therapist from time to time, but somehow we always end up talking about emotional cancers instead. Something about wanting to unload after cancer. I hope you’re doing well, my friend. xo
1) Whether you’ve been diagnosed or not: Have you ignored a cancer-related social media message or article message shared by a loved one who has the disease? If so, why? (No judgments here)
I’ve ignored them by friends. Not “loved ones.” A couple reasons: I have a very small circle on Facebook, if one person has shared/copied etc. 10 have….and I don’t want to do it 10 times and clog everything up. There is so much bad going on right now- I really feel like I have to pick and choose what I share- I could for example find 10 policitcal things a day that matter to me, but I know if I do that no one is going to read, so I try to limit it. It’s the same thing- And, since I also share the rare, rare, rare ( like no one has ever heard of it disease I have it’s a balancing act)
2) For those who have been diagnosed: Have you taken the “FUKITOL” pill too? (possible diagnostic reasons: sick of a job or a relationship)?
n/a But about my own disease? Nope, way too much of a people pleaser
3) If you are a blogger or any other type of advocate, do you often feel unheard? If so, how do you cope?
Sure, why would people care?
Thank you for your honest comment, Chris. For me it becomes more of an issue when a loved one, such as family members, ignore my requests. I completely understand about priorities and the fact that there are too many causes for us to focus on every single one. I also understand trying not to overwhelm ourselves and others. I usually stick to the causes that are personal to me, and especially those that affect people I love and care about. About being a people pleaser, be careful. Try being kind to yourself as well. I came across this great (and funny) talk about “the magic of not giving a f”. Maybe you’d find some helpful tips https://www.youtube.com/watch?v=GwRzjFQa_Og (perhaps not an appropriate video to share on my blog post, but there’s some value in it).