ihavebreastcancerblog

So I had put up a post in this Facebook group of breast cancer patients and survivors where I had volunteered to help run it with the group owner because she needed help as her life was really busy right now and a little bit complicated. I offered to help not for some self aggrandizing glory. I stupidly presumed that this was a group of adults.

Apparently not.

My post was about anonymous posts in breast cancer groups that don’t really need to be anonymous. What had made me think about this as someone helping moderate a group is someone had posted about having extra stuff from like basically a breast cancer swag bag that you get when you’re newly diagnosed and you’re getting ready to go through treatment, etc. etc. So if you’re looking to give this stuff away and you’re posting anonymously, how does that happen? And why is that a post that needs to be anonymous?

My post was not mean and it was not unkind. It was just basically if being a member of a breast cancer and breast cancer survivors group is supposed to be about support and fellowship how does that happen when everyone is posting anonymously and then as a result you have less connection to people?

Well, I sure stepped in it and it wasn’t part of the approved group think that I didn’t know existed until today in this group. (Note I had been in the group for a few years.)

When I saw the way the comments were going about what I had posted, and then realizing there was a distinct lack of reading comprehension about what I had actually written, I shut the comments down. You can do that and when you moderate a Facebook group a lot of times it will help take the temperature down on an issue.

But although I’m supposed to be kind to everyone, then people start posting other comments in the group about me. That includes the screenshot I have shared above. The comments then started at a fast and furious pace on that post. I stopped looking when it was 30+ comments about what a horrible terrible human being I was.

Pack mentality.

I will spare my readership the screenshots of inanity of the comments, which kind of makes all of them very hypocritical doesn’t it ? I’m supposed to be kind yet they are allowed to be unkind to me and how does that work? But I can tell you that this is exactly the kind of stuff I saw in real in-person support groups when I was newly diagnosed almost 14 years ago. It’s why I literally went to two meetings and decided it wasn’t my cup of tea and I started to write this breast cancer blog actually as a result.

I needed a place to go with my thoughts and very mixed feelings that were then very new and tumultuous concerning breast cancer. I wasn’t putting myself one foot in the grave, and I wasn’t going to be dishonest about things. Back then I veered away from in person support groups because they were like one giant popularity contest, and it had been a long time since middle school and the lunch tables. And I understand the fear and being scared, but I looked at all of these women in these rooms that I checked out at first, and I didn’t understand what planet they lived on. They were acting like they were already dead. Maybe the difference between them and myself was I made a conscious decision back then not only to be honest about how I was feeling about things, but to work really hard to remain positive because I felt that was the best thing to help fight cancer.

It’s much like how I have been always very honest about how I felt about the commercialism of Pinktober. You still won’t find me buying pink plastic crap or things like pumpkins painted pink because it’s October. So I guess in the minds of a lot of breast cancer people that either makes me a bad breast cancer survivor and patient or a foreign country. I can’t decide which. I also know that I am as a human being and an acquired taste. It does not make me wrong or bad. It just makes me different and I am never someone who is going to subscribe to group think.

Of course, then I received a message privately from the group owner:

So yeah, again kindness is the number one rule? Then why were all the disparaging nasty comments about me allowed? and the comments of those people made sense to her, but not what I said or how that might make me feel to read all of those comments. When all I was trying to do was have people see things slightly differently. For those in the back if you’re in a private social media group, and it’s supposed to be a fellowship of sorts because we had or have a commonality in a disease called breast cancer how do you trust the fellowship when you don’t even know whom you’re addressing half of the time? and then there is just the basic practicality of people put up a lot of anonymous posts that don’t have to be anonymous.

I wasn’t removing a choice from group members, I was trying to get them to consider another perspective. And the comments on my post before I shut it down were attacking me and I didn’t attack back. I did say that they were missing the point of what I was saying. It did come down to basic reading comprehension. And then there is the whole thing about social media in general that I have never gotten to and it’s how people pile on if someone didn’t say something they were expecting. Not that it was mean, not that it was inappropriate, not that it was using profanity… it was just different.

And I have to tell you right or wrong the woman who owns the group struck a very negative chord in me. So I told her I was leaving the group. I didn’t really care that she removed me as a moderator, but to basically say she doesn’t value my opinion, and I was being unkind…. yet it was OK for those other women to leave 30 or more comments before I stopped looking that were definitely unkind towards me? That was honestly a little offensive.

I actually did leave the group. And I unfriended the group owner. I don’t want her to have to explain to people why she’s Facebook friends with me after I left her group and was no longer a moderator. And I did send her a message back to tell her exactly how I felt. And I didn’t color it. I was straight about it.

I also sent her screenshots of just one of the private messages I received that were unsolicited about my opinion.

That was just one of the messages I received. I’m not sharing any of the others because some of them contained profanity which was completely unnecessary.

I’m disappointed because this was a group that I thought was decent. But I’ve discovered that a shocking as it may seem, these breast cancer groups are often a community where people are extraordinarily judgmental and not necessarily supportive if you don’t share their complete worldview.

And you know it’s funny when I was in the shower last night for a second I thought I felt another lump. Instead, I realized it’s just part of the density and dead breast tissue that I’ve lived with since I finished treatment.

Now that’s something I probably would’ve shared, but I’m glad I didn’t because they all are hypocritical. They want to post without judgment yet they want to judge with someone else posts.

Not the people I want supporting me through any breast cancer journey.

What I appreciate is honesty and not platitudes. Maybe that makes me strange to them?

But at the end of the day it doesn’t matter, so they can enjoy their little pyrrhic victory of actual pettiness and hypocrisy.

I have been a cancer patient and survivor for 14 years, soon to be 15 and I have never looked to a group to post anonymously, I looked for the fellowship and a place to be honest without feeling judged. So what do I get? Tons of judgement and posts talking about me like I can’t see it which makes them all a giant collective of hypocrites.

I don’t think these groups are made for me. I know I’m not made for them. And that’s OK. But I don’t and never will believe in dumbing down.

You know you never want to be critical of people with cancer because we all handle it differently. It’s a disease with a very public face, that is a very private battle. It’s a battle that is painful emotionally and physically.

But I think I have a bit of a cancer manipulator in my life, although they’re really not in my life anymore. So this is reflection and observation.

Almost 20 years ago I became friends with a woman who I thought was wonderful. Older, strong, seemingly so independent. Her kids were grown and were my age and older.

I’m met her before I had my own breast cancer, and she was kind and upbeat when I was going through breast cancer.

The years went by and we actually became what I thought was close friends. To me she was kind of like a bonus mother. She seemed very cool and she got me. We all like people that get us. At the time, I didn’t pay attention to the fact that she had her life segmented and mostly we did not crossover.

But now I wonder did she get me or was I just convenient for a number of years for whatever reason?

Last year at some point, she was talking about her son’s daughter in law by marriage. She had a very aggressive breast cancer. She made some comment about how expensive breast cancer was and that her daughter-in-law would have to help her son. I literally said well she’s done well for herself in her career, of course she will help her child in anyway possible.

I only knew about the career because my then friend had said something. Mind you I can’t remember her daughter-in-law’s name half of the time, and I’m not saying that to be mean or rude or dismissive. It’s just the woman doesn’t mean anything to me. I guess we are close enough in age, but she’s not anybody I’ve ever met so the name doesn’t stick in my head.

That was taken as a large affront. I was told I was inappropriate. I remember the time I apologized and said I didn’t mean anything by it other than a comment which wasn’t derisive, it was kind of in my head the natural thing or order: a mother takes care of her child no matter how old the child gets, and that is bad to say?

So I just let it go. She’s older I had noticed her personality was changing as she was aging and I tried to be respectful. After that point, I think that was used as an excuse to start to carve me out of her life. It was also about that time that I wondered if she was sick. Because sometimes when we would have conversations, she grew very repetitive or she wasn’t quite tracking and this is somebody who is an extraordinarily bright human being.

But this all turned into eventual radio silence, including not picking up the phone when I called on Thanksgiving, so I sent a text and got almost an abrupt reply.

Now this is someone I’ve always known who can be almost capricious about her relationships if you’re looking at it as an outsider. But people deal with things differently. I figured I really didn’t know what was going on but out of respect for a friendship that had a longish duration I just sort of was quiet about it.

Then I find out from someone we know mutually somewhere in December that she was sick. That it was cancer and it was bad. And it was also a gynecological-related cancer.

That really resonated with me because I remembered when she told me when I first met her how she was no longer going to a gynecologist because why should she? She was old and not sexually active. Of course I remember when she told me this because it was one of those wince worthy things that you didn’t want to hear from your own mother, let alone an older friend.

So then I started hearing from other people who were all told by her not to tell me. And it wasn’t not to tell me because she didn’t want to upset me or she hadn’t told me yet. It was a control thing. It was a punishment. I’ve kind of seen her behave that way towards other people I just never experienced it.

So I you know, thank the people for telling me and said you know I’m not going to be talking about it because it’s not my story to tell. And that’s the truth. I want to be respectful of this woman’s timetable for telling anyone her news. 

Christmas came and went and so did New Year’s. Recently the phone rang, it was my friend except was she really a friend at this point I didn’t know what I was at this point other than discarded.

I let the call go to voicemail at first because I wanted to see what she said and then be able to decide if I want to call her back. Not being mean I just didn’t feel like being some kind of weird emotional punching bag and that was my initial reaction to getting a phone call after so much time.

And you have to understand that this was someone who for years was in my life almost daily. And while she was in my life for the most part, I enjoyed it. Because she was interesting and bright, and taught me stuff about gardening and other things. And she seemed to have such a generosity of spirit.

The message I was left was rather perfunctory and almost like we had never known each other. You’d have to hear the tone to understand and obviously I’m not going to share that.

I played the message for my husband, and he said well you should call her back. You know something is wrong. He said just rip the Band-Aid off. See how she is.

So I did. I called her back. It was like a three minute conversation first she tells me she has terminal cancer, then she tells me she’s getting a special grant like the pharmaceutical company did it just for her for some kind of immunotherapy. I just listened because I don’t understand hospital systems that throw lots of stuff at a diagnosis that’s already supposedly terminal? It seems almost cruel.

So about a minute and a half, and she decides to dig in to why she was no longer speaking to me. And it went back to that phone call all those months ago. Then she accused me of researching her family and invading her privacy. And I literally said “what?”

No, she was on speakerphone so my husband heard the whole conversation. After she says that, this great pronouncement I said to her, I didn’t do any such thing. And I hadn’t and then she hung up on me.

I could’ve called her back, but I just decided not to.

I said something she didn’t like that was not ill intended, and you know it was just another example of acting irrationally. I also didn’t call her back and I’m not going to because you don’t want to upset someone with a horrible cancer diagnosis. So I’m kind of grateful for the years of friendship and you know she’s taking her journey at the end where she wants to go.

But to me, that is not the end of the story. Since this time she’s been running around telling people about her diagnosis, including the town government , where she lives.

As the news has gotten out and people who know her watch who she’s told and how, it becomes a really sad story. This is a bid for attention. We all know that she’s been lonely, and with every year she’s aged, she’s spoken about well end of life stuff. 

But she’s using her cancer, so people pay attention to her. And to me that’s cancer manipulation. Just my opinion, and I am trying to show empathy and sympathy, but she’s leaving a discarded trail of people who have cared about her for years in her wake.

So she will live out whatever is left of her life, and I hope for her sake the treatment she’s putting herself through gives her viable time. But honestly, I’m just afraid it’s going to wear her out faster. But that’s her choice for her treatment. Of course, the funny thing is I remember having a conversation with her about cancer years ago and her saying if she got a bad diagnosis, she would never put herself through hard treatment.

She wants attention and the lime light and I hope she gets what she needs in this last stage of her life. I mean that most sincerely after she hung up on me, I did send her a letter telling her that I was sorry she had received this diagnosis, because I really am. But I did honestly tell her I didn’t do what she accused me of and that was unfair, but essentially I’m not going to continue to argue with her to change her mind because I don’t wanna upset her while she’s going through cancer treatment. I also said that if she wanted to talk or whatever she just had to let me know.

And that’s where I’m leaving it. You have to respect people’s boundaries when they’re going through cancer, and I am one of the lucky ones, but I do remember what it felt like when people didn’t respect my boundaries as I was going through my surgery and subsequent treatment.

People process things differently and that is just the way it is. I’m glad I knew her for so many years, but if I’m honest this person, I really don’t know.

Given the type of cancer, she has realistically she could just have a few months left. And I hope they go well for her.

But it is a little sad to watch someone manipulate people via a disease. And it makes me wonder if we all do that as we’re going through our cancer battles? Is that a mode of survival or self preservation?

It’s an interesting point to ponder.

But some people get very angry when they get these diagnoses, and they don’t let it out, and it comes out in other ways. Or there was a simmering anger you never realized in the person before and cancer rips a Band-Aid off.

I’m not sure if this is going to be a public post at this point or a private one. I have to think on it.

But I thought I should write about this because it’s like yet another stage in this twisted journey once you’ve gotten your own cancer diagnosis. there is how you react to your own disease, and how you react to someone else’s.

What’s that saying about people are in your life for a reason, a season, or a lifetime? This is just another season. 

I have an older friend. For years, she was one of my rocks, but eventually, as is the case with most humans, the cracks show and I think she will end up being one of those people who was close to me when she was on the outs with other people.

Why do I say that? Because there are people she was on the outs with that she is now no longer on the outs with, and I am on the outside. Those people on the inside are more advantageous to her at this stage. That happens and that is her choice. It’s also a pattern. It’s just kind of sad and disappointing. 

It’s one of those things where there was no argument or scene or anything. She simply moved away from me and some other people during this past year.

About six months ago, I suspected she was sick. But she’s one of those people that knows better than everyone and nothing happened.

Well now that I am being carved out, I find that I was sadly correct. And it’s cancer, and it’s not nice. It’s cervical cancer that has spread to her bowel which also means it’s may have spread other places.

As I understand it, she will be starting chemotherapy in the new year. Or maybe it’s immunotherapy, I’m not sure. 

She’s been playing whisper down the lane with people and she tells a couple of people. Then she tells mutual friends that she needs to speak with them, but they can’t tell me. I don’t know what the game is, but I’m not playing.

There is one thing I learned from my own breast cancer experience, and that is people choose whom they want to let in. And you have to respect that during someone’s cancer journey, and I will. But the way this woman went from telling me she loved me and I was like another daughter to carving me out is almost cruel. And you feel these things more acutely during the holidays.

But humans are flawed, and I will let it go. There is no point. If she wants to talk, she can contact me.

I did send her a letter before Christmas to tell her I was thinking of her and that I did love her, but she would have to decide what she wanted to do as a path forward and then I suspected she was sick. I said in that letter that I wouldn’t shut the door, but she was going to have to contact me if she wanted communication.

I also did say which she’s wouldn’t like that I thought one of her children, her oldest son, treated her like hell. Because that’s the truth he is the physically closest child to her, and he can never be bothered to put his own issues aside to see his mother. And at some point, we have to stop blaming our parents for things and act like adults. And he’s in his 60s. Instead he behaves like a passive aggressive practitioner of elder abuse.

But this woman is drawn to bad relationships with strife. I think this will make this part of her life journey more acutely difficult than it needs to be and I do feel for her. I hope she can find her positive and her hope and not cling to the false hope that this son will make this anything other than about him.

Cancer is a public facing disease that is a truly private battle for everyone who faces it. I did spend some time this week being angry at different times because this is one of these older women that decided 20 years ago she wasn’t going to a gynecologist anymore. Maybe if she had gone to a gynecologist over the past 20 years she wouldn’t be facing this. This is why it is so important for women to maintain regular healthcare.

Given her age, I hope she outlives at least part of her cancer. Hers is a study of periods of life tragedy. Life can be joyful and it can be painful and cruel.

I don’t wish anyone the journey of cancer. But it’s not the time to be petty with people who care about you, and that’s what she’s doing.

Again, I’m respecting her need for space. But lashing out at people who care pushes them away, which is why we are often faced with life’s conundrums isn’t it?

I am not the one who’s going to insert myself and someone else’s personal cancer journey. I wish her the best outcome. And I hope she does ok.

I had to mull this over for a few days, but I think it is my only choice here.

Please, if you are a woman, don’t ignore your health checks. I hate all of the appointments that seem to keep materializing with each year, but I know that I have to keep that schedule. And I will be honest, it is really hard for postmenopausal women to get regular gynecology appointments. I actually missed the entirety of 2024 because I couldn’t get on the schedule. But I didn’t skip this year. I just kept calling until I got an appointment.

We now live in a country where our healthcare and access to it, are prioritized by our bank account. If money is no option, you can get any appointment you choose, but if you have to play by the rules, use health insurance and live a more moderate and modest life it’s a lot of effort to get things done. It shouldn’t be this hard.

Even as a breast cancer survivor, it was hard for me to get an actual mammogram this year. And that is something I can never, ever skip.

My wish for 2026 is somehow healthcare can be on a better path in this country without the mad men controlling it. I know, I know if wishes were horses then beggars would ride, but a girl can hope.

So these are my thoughts as this year draws to the close. I am grateful that I have completed 14 years cancer free from breast cancer. I still know that I am one of the lucky ones.

Pax.

I unfriended someone on Facebook the other day, an older man as a matter of fact, for his obnoxious commentary about the former president’s prostate cancer diagnosis.

My late father eventually died of prostate cancer that metastasized elsewhere after initially only being some cells, and I want to think that people should be able to be better humans about anyone’s cancer diagnosis.

Leave your goddamn politics at the door because cancer doesn’t recognize gender, politics, socioeconomic level, or anything much other than it ravages your body.

One of the comments I saw about Joe Biden was something along the lines of well they guess if they could’ve hidden the diagnosis they would have. It’s cancer and cancer is very personal. It has a public face as a disease but when it’s happening to you, trust me because I know personally that you don’t know how it feels and you should not tell anyone how they are supposed to handle it or go through it.

If as human beings, we can’t show respect and compassion then that is pretty freaking pathetic.

I had stage two invasive lobular breast cancer almost at stage three given size of tumor. It was 14 years ago in March 2011, that the tumor was formally diagnosed and discovered, and because the US back the was dragging their heels on newer mammography machines as far as approving them because mammogram with tomography, also known as 3D mammography or digital breast tomosynthesis (DBT) was NOT yet approved in US at that time. My cancer was discovered using a bilateral MRI.

I had felt something before that, but the regular mammogram then didn’t show the invasive lobular tumor. Neither did an ultrasound. I had Aetna then and they initially didn’t want to pay for an MRI. But my endocrinologist and gynecologist at the time was also a breast cancer survivor and basically said to me back then that I was going in for these tests and stuff because she wouldn’t forgive herself if something was missed. So somehow the billing wizards at Penn Medicine got Aetna to approve it and then to subsequently approve a needle biopsy.

And this was after having first thought I felt then imagined something in my left breast that previous October, but was told by the Securities and Exchange Commission that I couldn’t put off meeting with them as a the compliance officer as part of their then burgeoning war with my old boss by ONE DAY. And yes, that really did happen. The firm lawyers asked if we could put off my interview by one day and they refused so by the time I was able to go back and get that mammogram it was March in the then NEXT year.

So yes, my tumor would have possibly been discovered in 2010 had I been able to keep my appointment, so I was really lucky it was discovered confirmed and successfully excised in 2011 with clear margins.

Not everyone is so lucky. As a blogger I have had some of these types now saying garbage about Biden’s cancer who literally have written it’s a shame my breast cancer didn’t do me in back then so I really feel their nastiness again here.

I can’t believe this is the world we live in. It’s pathetic.

Then another person is a fairly well-known realtor who also had horrible things to say about Biden’s cancer diagnosis.

Compassion costs nothing. Kindness costs nothing.

Americans need to get their heads out of their asses.