breast cancer screening needs to be EVERY YEAR and start earlier.

Posted on May 1, 2024 by carla

A lot of times I tune things on the Today Show out. And that’s primarily because this has gone from being a very good morning news show with good news segments, to a lot of softball and marshmallow fluff.

But they had the segment today about breast, cancer and mammograms and breast cancer screenings.

I started listening because they were talking about the rates going up for breast cancer in women from 40 to 49. I was 47 at my diagnosis. 

So they are talking about mammograms starting earlier and then being covered, etc. etc. 

New guidance issued by the U.S. Preventative Services Task Force recommends that beginning at age 40, all women undergo a routine breast cancer screening every other year. NBC’s Dr. Natalie Azar was the medical professional interviewed.

I believe, given the size of my tumor, which was stage 2 almost to stage 3 when it was discovered, I could have quite possibly not survived breast cancer, if I had fallen into that category of insurance paying every other year for a mammogram.

That’s bullshit. Women should be able to have mammograms not only earlier in life, but insurance should pay for it.

When I was diagnosed, my tumor did not show on a regular mammogram or an ultrasound. I had an invasive lobular breast cancer tumor. It only showed up finally on a bilateral MRI with dye. I had to fight for everything. And this tumor could be felt, but it couldn’t be seen, which is why I had to do a bilateral breast MRI with dye.

At the time I was dealing with Aetna as my self pay HMO. And they sucked. My readers will remember when I started radiation. They did not even want to pay for Biafine cream, so I had to pay out of pocket and it was expensive. It was prescription then and it cost me back then in 2011 over a hundred dollars a tube.

When I was diagnosed with my breast cancer, Tomography was in Europe and NOT FDA approved and being used in the US. Tomography has been a game changer for mammography since it was approved, yet a lot of insurance won’t cover it and they just want the regular, old-fashioned mammogram machines.

Because I am a breast cancer survivor, and I have dense breasts, I am really grateful that I can get a Tomography mammogram.

But if I had to go every other year for a mammogram, I would freak out. And again, if I had to go every other year for a mammogram back when I was diagnosed, I might not be here writing this today.

I really wish they would stop screwing with women’s healthcare in this country. From how often we are “allowed” to get a mammogram to being told what our right to choose with our body should be, it’s really total bullshit.

Legislators in the United States do not like to deal with insurance companies. I mean face it they’re high-powered executives probably fund a lot of campaigns, right? But those of us who are the regular people in this world need consistent access and fair treatment.

Part of that fair treatment involves reasonable out-of-pocket medical expenses. I basically have had healthcare PTSD over the last 14 years. Every time I have to have something, I dread what the co-pay is going to be. Take for example the Mohs surgeries on my skin cancer spots. Usually it’s $1000 to walk in the door every single time sometimes more and then after everything is settled out. I get these residual bills from Penn Medicine that my very expensive and very good healthcare plan won’t cover and half the reason we’re not getting stuff covered is there’s a lot of pork in the healthcare industry and when it trickles down to for us, the subscribers and the insureds we pay for it. Out the ass.

So if they are recommending that women start getting mammograms earlier, they should also be available to everyone and insurance companies not playing reindeer games with our lives.

This is something where I will write my elected officials in Congress and tell them we need mammograms, younger, and they should be available and paid for by insurance every year.

Think about it. Health insurance companies are putting too high a premium on our very lives. We pay for health insurance, they should give us what we should be entitled to as women. It shouldn’t be so hard to get the things we need done. I’m not talking about elective procedures like Botox and plastic surgery. I’m talking about life-saving procedures and preventative measures.

Fight for mammograms. Fight for insurance companies paying for mammograms every year as a basic rights of women in this country. 

Thanks for stopping by.

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skin cancer encore and life moves on…

Posted on April 30, 2024 by carla

Well, here we are. Another Mohs surgery is in my future as skin cancer showed up again. Ironically it’s underneath where I had a skin graft after a Mohs surgery a few years ago now.

My post skin cancer reconstruction surgery of the late fall 2023 is healing really nicely. And the surgery was a success because my hair is growing back really well honestly. It’s still short in spots but it is growing back. 

On the breast cancer front I am still healthy just older. And I really thank God for that.

WordPress just reminded me that 13 years ago I registered with WordPress and this was the first blog on their platform that I started.

My first post here, I just jumped into the breast cancer of it all. I might not write here about this as often, but it doesn’t mean I don’t think about it. Cancer is the gift that never quite leaves your mind once it has visited you.

But how you go on makes a difference. Are there some days that it still bothers me? Oh definitely especially when I get a skin cancer recurrence. But my life is pretty damn good and I have to remember that. And sometimes it’s hard for me because by my nature, I’ve had to teach myself to be positive. It is hard sometimes, especially since I can overthink the crap out of just about anything, depending on the day of the week.

One of the things that makes you stress out unnecessarily is dealing with anything having to mean navigating our healthcare system. Our healthcare system is broken. I pay through the nose self-pay every month yet I seem to be on a permanent payment plan with Penn Medicine for procedures, and testing that is required.

Yes, I need the health insurance I have. No, I’m not going to do some BS plan that sleazoid fake insurance brokers say covers everything and all it really is is catastrophic coverage that takes your money and costs you more.

I have friends and family in the UK and National Health doesn’t seem so bad and there is access to specialists. Except in the US that is the ultimate boogey man. I think in part, it’s a national bogeyman, because it goes hand in glove with our screwy political system. And if there was National Health here, all those insurance company executives wouldn’t have their private jets and their tasty bonuses.

And along with our screwy healthcare system is the burnout rate. Physicians, nurses technicians, you name it. The skin cancer on my face is some things that normally I would get taken off within a week or so, but because of scheduling, I have to wait until the end of June.

And no matter what healthcare system you’re in everyone has the same lament about how hard it is to get a doctor on the phone or a nurse or just a human being not in a phone tree system.

And one of the other things that seems to have cropped up in our brave new world of US healthcare are people who pretend to be healthcare professionals and are not . How can people not check out if someone is licensed or not ? Yet it happens.

In a little over two weeks I turn 60. When I started this blog, I was 47 and I had no idea what the journey of breast cancer would bring me and well here I am.

I’m still standing. And I’m doing much better than just standing. I’m living.

Thanks for stopping by.

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the reality is sometimes harder than the concept.

Posted on January 25, 2024 by carla

When I started my breast cancer journey more than 12 years ago, I had to get through a lot. Everyone who has breast cancer has to get through a lot.

Breast cancer is just a lot. Actually, any cancer is just a lot. And it is a lot to deal with.

I wrote my way through breast cancer with all of you, and like a lot of breast cancer survivors, I ended up with a second cancer. That second cancer is skin cancer.

Skin cancer is no joke. I started having regular dermatology appointments because that’s what my oncologist told me I needed to do going forward after being treated for breast cancer with radiation and taking breast cancer meds.

So, as I’ve written before, I have had no cases of melanoma, but have had basal cell and squamous cell. I have now had three Mohs surgeries, and this past Thursday, I had post cancer reconstruction under general anesthesia on the back of my head where the last Mohs surgery was.

The surgeon and the nurses at Penn Presbyterian Hospital in Philadelphia were amazing. But it was a super long day.

I had a 2 PM surgery and I was on time, but there were people ahead of me in preop with various surgeons, but I think kind of held me up. It’s a big hospital and that happens. There was someone who was dehydrated and they couldn’t find a vein to start the IV before surgery so they had to rehydrate that patient. Then there was a woman across from me who was prepped and ready for surgery and very fidgety, and something wasn’t right with her insurance so that held everything up. And that kind of amazes me the whole thing with health insurance. Here we are as patient trying to use what we’re paying for and we’ve done all of our preparation but they haven’t finished wrangling I guess with a hospital system.

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life goes on

Posted on January 25, 2024 by carla

Well, here we are in 2024.

As I have said, every year repeatedly, what a long, strange trip it has been. But I’m still here to tell the tale.

My mammogram will be sometime in June, and other than that I see my oncologist in a few months for a check in.

My hair is growing in underneath in the back where I had the post cancer reconstruction surgery last fall. I will be completely neurotic about sunscreen and hats this year and going forward. I had always been pretty devoted to keeping myself covered but skin cancer happens.

Recently, I got a note from Penn Medicine about genetic testing. I contacted them back and said I was confused because I already had genetic testing. However, it’s been long enough since I had the genetic testing initially, that they want me to have some more.

I have to be honest it has awakened some feelings in me where I have been going back-and-forth with myself about whether or not to do it. Realistically, I know myself I like to know versus not knowing, so I will get updated testing but still it put my head in a weird place.

Well, that is about all that I have for all of you. I figured I should put some kind of a post up because it is a new year.

All I can say in closing is get your mammograms ladies and don’t be afraid of genetic testing. Because still, many years later, one of the things I find the hardest about breast cancer are the not knowing parts of the disease.

Thanks for stopping by!

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breast cancer awareness month 2023 for me means skin cancer surgeries

Posted on October 13, 2023 by carla

Hello readers. It’s been a while. I was chugging along, living my life enjoying not having medical bills for once, and then life happened.

A visit with the dermatologist a few short weeks ago found more skin cancer. I think skin cancer is officially my second cancer after breast cancer. You know how women talk about getting other cancers after breast cancer? Mine is skin cancer.

I’m feeling a little stormy about it right now emotionally. I’m also dog tired after a day yesterday that was kind of long.

I will start with the dermatology visit as in the regular dermatologist. My original dermatologist retired, so this time I had my first appointment with my new dermatologist. And I think I am as crazy about her as I was about him. It’s really nice having dermatologists that care and take time with you and are thorough. Why? Because if you have skin cancer, it might just save your life.

I am still under the care of Penn Medicine, even if there are things at times that irritate the snot out of me. But that is the business side of it, not the medical care. It’s part and parcel of the problems of the model of healthcare in this country.

And truthfully, the business side of hospital systems is irritating, because you no longer have access to the amazing local people who take care of billing, as one example. You go out of state to talk to people. I think the billing for Penn Medicine was in Texas last time I checked. So, if you have questions, or you are challenging a charge, it’s not as easy as it used to be to find someone to talk to. And that’s the other thing about Penn Medicine that still hasn’t changed – their terrible phone system. However, in fairness to them, I don’t know any hospital system that has a great phone system. It’s like EVERY hospital system make it difficult to talk to the people who are in charge of your care. It’s a complaint that I have heard from people everywhere whatever their hospital system is across the US.

And then, of course, there is the wonderful perplexing pretzel logic filled wonderland of actual health insurance in the United States. Oh yes, we pay for the privilege, we pay indeed. But sometimes I wonder what we’re paying for? This week for example. I feel like in Independence Blue Cross was punishing me for being a little more healthy this year. It cost me $1000 as a deductible to walk in the door before my co-pay for my Mohs surgery.

But let me back up until how we got here with me having another Mohs surgery during Pinktober. And everybody knows by now that as a breast cancer survivor, Pinktober is something I don’t necessarily adore every year.

I went for my annual check up with my new dermatologist in the same practice I was in before in September. I was nervous because I had been with my other dermatologist for years before he retired, and he was a terrific and thorough doctor, who took the time to listen to his patients. And that is one of the things I have always been particular about. I am not a hypochondriac. I don’t waste the time of medical professionals, but I always want to have someone that I can talk to who will answer questions and explain things so I can understand them in every day, English, since I’m not a medical professional.

So at my initial visit to my new dermatologist, this time, a woman, we were talking about that this was my first regular annual visit in a few years. You see, as I’ve written before, they keep finding skin cancer. So I had finally gone for a year without anything. So I was kind of psyched about that walking into my annual check. But as she was giving my scalp a thorough once over, I remarked about this weird little spot in the back of my head. It seems like I must’ve scratched myself or had a bug bite or something and have had this thing there for a while, but it never really heals. So my doctor asked me where the spot was and I use my finger to find it and she started looking at it. And she stepped back and she said she needed to send this out for a biopsy. It might be nothing but she would rather be cautious given my skin cancer history. So a little sliver of it was sent out for biopsy.

The biopsy returned a diagnosis of positive as cancer. Yes, a cancer on the back of my head this time. Fortunately, it’s basal cell. I had a classmate from high school whom I was very fond of die many many years ago now of melanoma, so I’m really happy that it wasn’t anything like that. However, I wasn’t happy I had skin cancer again.

So back to my amazing Mohs surgeon I went. Yesterday was the procedure. And it was an interesting experience this time because from the time I was in the regular waiting room outside where dermatology is, it was a lot of people with very nervous and somewhat negative energy about these procedures. And today for the first time there was a wait because there were just I guess enough people with complicated enough Mohs procedures ahead of me, so it just took longer.

Mohs is a very specific practice within dermatology. It’s actually kind of fascinating. They take off little layers of skin until you get clear margins. It’s kind of delicate so it’s time consuming. Each layer removed is sent to an on-site lab for immediate pathology evaluation. So this morning it was an hour before I made it out of the outer dermatology, waiting room to the inside of dermatology and then further in to where the Mohs areas are. Mohs patients are almost seen in layers for these procedures, as the cancer layers are removed from each patient in each Mohs suite.

They were very busy yesterday in this area of dermatology so I couldn’t hang out in my own surgical room in between them lifting the layers of cancerous skin off. The way to Penn Medicine does it, the area for Mohs surgeries is its own little world.

It’s actually very cool because we have our own waiting room within dermatology. But today, there were a lot of people with a lot of nervous and energy of uncertainty in this waiting room as well. So, although I am not exactly blasé about these procedures, every time I have to have one, it does make it more difficult sitting there. And when you are sitting there with several people who have less than positive energy, it makes it harder on yourself, and therefore more tiring as an experience.

Where I was lucky is it only took two passes to give me clear margins. Where I wasn’t lucky is it’s a really kind of a big wound on the back of my head. I would say it’s a couple of inches so I have some pretty big bandages popping out of the back of my head right now and because it’s the back of my head I’m going to need my husband to help me change the dressings twice a day after 48 hours have passed. I also have very thick hair, so hopefully I can keep everything on that long. It has been almost 24 hours keeping it on, so paws crossed.

Now the bad news. And words, I never thought I would utter: I have to go to a plastic surgeon. I opted to not have breast reconstruction as my readers know after breast cancer surgery 12 years ago. Some days I have regretted it, because especially as I age, my left breast is half gone, and because it was pumped full of radiation, what is left of this breast has shrunk more every year. So I am lopsided. But I wasn’t the boob job kind of person and I didn’t want to deal with more surgery, expanders, and drains and the whole rigmarole of it. For me that surgery was enough and although it messes with my self image somedays I know ultimately I made the right decision for me. But as a woman, I can’t say I don’t look in the mirror some days and feel upset still after 12 years. I am grateful to be alive, but I am sometimes resentful of the scars to your body and psyche that breast cancer causes.

But when I was speaking with my Mohs surgeon yesterday I said, although I didn’t opt for plastic surgery then, if a cancer surgery reconstruction is something I’m allowed to do with my benefits this time I will do it.

And it’s simple: I am not prepared to have a big permanent bald spot, like a bull’s-eye, in the back of my head that will be seen whether my hair is up or down for the rest of my life. I can live with lopsided breasts, but for me, I can’t live with that.

In a few days, I have a consult with a plastic surgeon. And as I understand it, what they do, essentially is kind of bring the two sides of the wound together and stitch it. I don’t know if that requires a skin graft or not. But what it accomplishes is this now wound on my head is pulled together, so I won’t have a glaring bald spot and missing hair. The theory is the hair will grow back in.

And it’s funny. This takes me back to when I was first diagnosed with breast cancer, and I was wondering how I would cope if I had to have a mastectomy if I had to have chemotherapy and lost all of my hair, and I knew I would power through it because the options are far less glamorous and you’re a long time dead. But yesterday I decided I couldn’t live with a permanent bald spot.

Living in my head yesterday, contemplating all of this was not fun.

So once again, I’m finding myself faced with the psychology of cancer in women. Even if it’s skin cancer, because I am sure there are some people who probably think I am really vain and a freak for even discussing this. But it goes to the female self body image and that is something you can’t take for granted, especially in a world where people are just mean.

I mean, remember, when I posted on this blog within the last couple of years of some woman who was politically opposite my belief system, who went and researched and dug out a photo of me in a hospital gown just after the needle biopsy but before I had my breast cancer surgery? Do you remember how she posted it like a wanted poster? That was just pure female bitch tactics designed to upset me what it did in fact, was make me more resolute in believing in myself because any man or woman who will that will do that to someone who was treated for breast cancer during breast cancer awareness month or at any time is a low life form, aren’t they?

My husband is as always my rock and I spoke to two of my best friends and my mother, so this will be a slightly difficult day that will fade. So I talked through the day yesterday at different stages. I woke up today, sore, itchy at the procedure spot and resolved to deal with this like I’ve dealt with the other things I’ve been through involving the not so magical world of cancers and skin cancer. I am tired, but mentally and psychologically. I’m in a much better place. Just like my mother actually promised I would be.

I will note I am posting my photo of my surgical spot and if the people who don’t like me as a blogger want to take that photo and spread it over the Internet and have fun with it that’s on them but it’s Pinktober and they’ll look like jerks.

Now, a brief word about Pinktober. It seems quieter this year. I am not smacked in the face with so many fake pink products that will only give 2% or 3% to breast cancer research. Some company wrapped a car of our local police department in pink. I’m not sure what I think, to be honest. I know this was done with good intent, but once again, I feel the need to remind people that breast cancer, or any cancer in women is not pink and fluffy.

If you donate to anything breast cancer this month, please do so responsibly. Do a little research. Don’t buy pink plastic crap. And for goodness sake, get your mammograms and other tests that you are required to get.

That’s all from me.

#thinkbeforeyoupink

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it’s official… all clear

Posted on July 1, 2023 by carla

As you know this year, I had my oncology appointment before the official mammogram. And the reason that is my health insurance won’t move my appointment up if it’s not the official one year since the last mammogram. Because God forbid if any health insurance company actually have to pay for an extra freaking test. Yes, Independence Blue Cross, I’m speaking about you. Because we’re not talking weeks or months we’re talking a matter of days to the last mammogram anniversary. It’s utterly ridiculous.

This was my first regular mammogram as in not a diagnostic just a regular old screening mammogram in years. It felt odd actually but now it’s over.

All clear.

NED (No Evidence of Disease) is still my friend.

I bought plants to celebrate. Crocosima if you must know.

Longer letter later, get your mammograms.

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12 years.

Posted on June 1, 2023 by carla

12 years ago today I think I was at this literal time getting ready to be put in post op after breast cancer surgery or already there. I still remember the pearls and leopard patten leather clogs that my surgeon Dr. Dahlia Sataloff was wearing.

I had almost forgotten today was the day until another friend of mine who lives with metastatic breast cancer remarked that today was her 84th treatment. She is quite simply one of the bravest women I know. I met her because her husband was a long time friend of mine, and I still remember when he contacted me to tell me his wife had breast cancer.

I would not have met her if it hadn’t been for him. He was taken from her too soon because he passed away a few years ago. But she is kept going and she’s so positive and she’s done so much and she’s one of my cancer heroes.

To say my life is so different than it was 12 years ago on this day is a gross understatement. And it’s not just because of the breast cancer.

Breast cancer is a harsh mistress, it really is. But you have to look for the positive within it because if you do it frees you to be a better person or at least you try to be a better person. (I don’t know that I’m a better person every day of my life.)

12 years ago today the cancer was removed from my body. But it still left so much uncertainty at that time, and I remember that, but I chose to be positive then about it and I’m choosing to be positive now about it even on days when it’s hard.

As a woman cancer plays with your entire self body image. I also had a decade on tamoxifen which caused me to gain weight. Some of the weight is gone, but not enough of it and there are plenty of days I don’t like living in this now 59 year old body, but then again I’m glad I’m living.

I have other lifelong friends, who are probably a year or less into this journey in life called breast cancer. It’s the sorority that no one wants to join. Yet, it is a fellowship.

I have friends that I have lost to this disease, and I think about them all the time. But I am so grateful that thus far (knock on wood) breast cancer has spared me and allowed me to live uneven chest and all.

Anyway, life goes on, we’re doing well, I’m grateful for all of you out there and I’m grateful that I get to live to fight another day.

Please get your mammograms regularly, even men who carry a BRCA gene.

Happy Breast Cancer Liberation Day to me.

12 years what a long, strange trip it’s been.

💖💗

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12 years ago this blog began…

Posted on April 30, 2023 by carla

12 years ago, I started this blog. 12 years and two 2 days ago, I received a diagnosis of invasive lobular breast cancer.

So it’s been 12 years one breast cancer, surgery, one full hysterectomy, two knee surgeries, a handful of Mohs surgeries for skin cancer and here I am.

Lately I have been thinking about the years. They have flown by. I am one of the lucky ones. When I began this journey, I was an observer of a sisterhood I admired, but wasn’t yet a part of. And if I am honest, it’s still not the sisterhood any woman would choose. It’s like it chooses us whether by genetics or fate.

When I started this journey, I wasn’t yet 50. Now I’m almost 60. I turn 59 soon, actually.

Recently I have been fighting a blue phase. As women I think as we age we wonder about our place in the pace of life. When we are younger we also wonder about our place in the pace of life . What is it about being a woman that makes us wonder about our place in the pace of life so often?

I am not depressed per se so no one needs to freak out. It’s just a thing. It is like the Talking Heads song “Once in a Lifetime”:

…And you may find yourself in another part of the world
And you may find yourself behind the wheel of a large automobile
And you may find yourself in a beautiful house, with a beautiful wife
And you may ask yourself, “Well, how did I get here?”…

Life just goes by so fast.

I have a really hard time with funerals still. Even if it’s not a cancer death. It’s survivor’s guilt. I am here, others aren’t. Even if they were much older than me. It’s such a weird thing, but it’s real.

So every once in a while I have a weird phase. I have experienced it since I received my diagnosis on April 28, 2011. And it generally speaking happens now. This year a few days straight of rain haven’t helped.

I am so grateful to be here, to be able to talk about this, to be able to garden, enjoy my family and my life. But wow once in a while here I am. Betwixt and between. I think a show on Netflix has really done it to me this time.

Firefly Lane. And the series is based on a book that takes inspiration from the author’s life.

It’s love and loss and enduring friendship and more. It’s something that everyone who has had cancer or known or loved someone with cancer you will identify with it. I thought it was beautiful and I loved it. But it hit a little close to home and oh I cried. So now I write.

It’s funny when you look at me 12 years ago exactly in this moment, I feel like I was such a different person. Only I’m still the same person. If that makes any sense.

I still feel that breast cancer freed me to be a better version of myself. It liberated me from things holding me back, mostly myself. A lot of stuff lives in our head. It builds up. Then you are diagnosed with breast cancer and it’s like the pause button comes down. Boom. Everything changes. And so do you.

Some swirl into a circle of darkness with a cancer diagnosis. You do have to work to stay positive. Some days are better than others when this all starts. It’s overwhelming and frustrating and that doesn’t even include the bullshit that our healthcare system puts us through.

And then you are through it. But you are never the same. And sometimes your mind wanders. Then you remember: you’re still here. And THAT is the best thing I have to tell all of you: the quiet realization that sometimes you need to remind yourself of: you’re still here.

Life is a journey. Pay attention to the ride.

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new milestone

Posted on March 10, 2023 by carla
Penn Medicine, Radnor PA

Today was my regular oncology appointment. All good here and NED (No Evidence of Disease) is still my friend!

June 1 will be 12 years. Today I had a graduation of sorts, my oncologist released me for annual appointments versus every six months. I truly love my oncologist I think he’s awesome. His name is Dr. Lee P Hartner and he is at Penn Medicine if you’re interested. Dr. Hartner has been a slow and steady constant and rock throughout this whole process. And he has amazing nurses. How I ended up with him is he was the oncologist my surgeon, Dr. Dahlia Sataloff suggested.

But as I left his office today, it was a weird feeling that I had graduated to yet another level of remission recovery whatever you want to call it. I had a quick teary moment, all by myself in my car in the garage. I know and I’ve said this before that I am one of the lucky ones. God willing, and the creek don’t rise, it will remain that way.

But cancer is a weird thing. Which is why I encourage people to get genetic testing when they are able if they have a history of cancer in their family. My own husband did genetic testing recently because his mother had breast cancer. He tested positive for the BRCA gene. He’s completely healthy, but he will have to be mindful as he ages. When men test positive for the breast cancer genes, it means that they do get male mammograms, and they have to stay on top of things like prostate exams.

It’s kind of weird realizing that your husband’s possibly going to be getting mammograms too, but we don’t talk about male breast cancer often, and it does happen. So ladies, if the men in your lives have a history of breast, and other cancers in their families, encourage them to have genetic tests done. It does not mean you will ever get cancer, but it means there is a genetic marker for it, and you might as well pay attention to that an act accordingly.

And today is also my friend Alene’s birthday. She is an oncology nurse among other things, and we’ve known each other since seventh grade. So I think that was another reason that today was a good day for me at my oncology visit.

Thanks for stopping by.

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hello 2023: social media and cancer

Posted on January 5, 2023 by carla

I posted the following on someone’s cancer timeline about those voluminous and far too frequent Facebook posts about people with cancer:

“Hi – I read the post all the way through. I am an 11 year + survivor of one, and do battle with another cancer that people take for granted.

However, I am not sharing this post because well, it’s too negative. I have deliberately chosen to be positive in the face of a very negative disease and live my life as best as possible because I figure that we are all a long time dead.

If you want to be helpful of those who have or have had cancer, be positive for THEM, be patient, just be there. Posting things are only a grim reminder of what they/we are dealing with. We already know, thanks. Lifting someone up with grace and positivity is amazingly helpful and supportive.”

I am starting backwards, right? Well it’s because of this latest no better than asking people to spread spam post flying around Facebook:

“I’m told that chemo, radiotherapy (and immunotherapy) treatment, can take years until you feel alive again … With the side effects of chemo and radiation, you will never be 100% again because your immune system is weak. Ruins marriages, families and relationships with friends. Because you’re not the same again after cancer and treatments.

In the hardest moments you know who your real friends are or who the people are who appreciate you.

Unfortunately, like with most friendships, Facebook friends will leave you in the middle of a story. They want a post to ′′like′′ for the story, but they don’t really read your message when they see it is long.

More than half have stopped reading. Someone may have already gone to the next post in their newsfeed.

I have decided to publish this post in support of close family, friends and relatives who have fought this horrible disease.

Now I’m focusing on those who take the time to read this post to the end … a little test, just to see who reads and who shares without reading.

Cancer is a very aggressive and destructive enemy of our bodies.
Even after treatment, the body is devastated. It’s a very long process.

I would like to know who I can count on and who takes the time to read this.
When you have finished this, write ′′Done′′ in the comments.

Sadly, cancer is still the illness of the century. Please, in honor of someone who died, or who is battling cancer. Everyone says, ′′If you need anything, don’t hesitate: I’ll be there for you.′′ So I’m going to make a bet, without being pessimistic: I know my family and friends will put it on their wall. You just have to copy. I did it for someone very, very, special! We all know someone who stood before us, and who has fought or who is fighting this battle.”

~ LATEST FACEBOOK CANCER SPAMMY SHARE POST

It’s 2023 people. Have we not learned yet that posts like this are bullshit? That they are essentially spam that do nothing?

The person who posted responded to me that they were posting for a friend who has had cancer come back again. That they don’t normally post like that.

I figured that they posted it for a reason, but to another breast cancer survivor and somebody who fights another cancer (I dance with skin cancer) when you see these posts they don’t make you feel warm and fuzzy. And if you are going to post things that asking people to share, then you have to be prepared that there are going to be other opinions.

And I will also say that I have friends that have had horrible breast cancers, some who live with metastatic breast cancer. They get up every day and they move forward because they want to fight and live their best lives.

However long that might be.

And you have no idea what it feels like as a breast cancer survivor every time someone you know who also had the disease in one form or another dies. But for them, we move forward.

I am not trying to be mean. But you out there have to understand how it will hit a lot of us who have had things like breast cancer, and other cancers. Yes, it’s hard for our family members but it is unbelievably hard for us and that is why I did make the conscious decision to be as positive as possible. And I am not a positive person by nature I’m just not, but it has gotten me through.

There are life blessings in the midst of severe heartbreak and hardship. That is all I’m trying to say.

If you know someone going through breast cancer the first time, or going through a recurrence, pay attention to them. Trust me when I tell you that I know they will need to vent at times, but this is a crazy obnoxiously personal battle and there’s also that thing in there where there’s a cry for help because they just don’t know what to do with how they are feeling.

As human beings, we can offer support, but there are also things where we have no expertise. And people need professionals to work things out with. said, along time ago that a lesson I learned when I was first starting my cancer journey from a friend who has dealt with thyroid cancer. A lot of their adult life was that she told me that sometimes you have to go down the dark side of the mountains in order to climb back up. That you need to climb back out up to the light.

OK it’s because of things like this and days when you are just simply not feeling your best for whatever reason, that I take to heart what a friend of mine, who lives sober said to me when I was starting the breast cancer journey. And that bit of advice that has stayed with me since then it’s like a 12 step program of life – you take things one day at a time and get to the next day. You keep trying. Every day won’t be perfect. It can’t be that’s human nature and life, but you take the good with the bed, and as my husband tells me, don’t borrow trouble.

So maybe offer people a hand up. Don’t regurgitate the negative that we as cancer patients and survivors and existers live with every day.

Trust me when I tell you that if we’re all honest with one and other, there are things we live with more than we want to talk about.

Take me, for example. I watched the second series of the Netflix show Firefly Lane. In the final episode of the season, one of the main characters discovers a rash on her breast that is a horribly invasive breast cancer. That has haunted me for a couple of days. Why? It’s our not so secret fear which bubbles up once in a while: “it” came back. I hate when it happens, which by the way is the main reason I hate the overly long breast cancer commercials on TV. It’s also why I have a difficult time with funerals. A gift that COVID-19 gave all of us was people starting to also live stream the funerals of their loved ones. For me, that’s easier to handle. Sometimes I legitimately can’t get to a funeral, other times I just can’t handle an in person funeral emotionally and that’s okay. At 58 I give myself permission to say that out loud.

So Happy 2023, people. I do count my blessings that I am alive and around to scribble my thoughts.

Be a blessing in a cancer patient’s life. Or anyone who is ill. That means realizing that our cancers or whatever aren’t about everyone else all of the time. You can choose to be supportive without being fake positive. You can be supportive without perpetuating negative feeling spammy posts on Facebook.

Needless to say, I will not be posting this on Facebook. There are too many people that won’t understand. Or can’t understand. After all, it’s easier to judge and point a finger then try to be different or just better.

Thanks for stopping by.

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