What you wish your friends knew
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Shetland- Or visit sounds nice. Anytime you want to PM me, I am here. Hugs.
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SP- you hit it on the head- “it takes away a non cancer place we can go “
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Ok ladies I just did something I wonder if was ok to do.
I have a FB friend that went thru breast cancer 3 years ago. Triple Negative. Bilateral mastectomy. Chemo. Rads. She writes beautifully. She posted a long, beautiful post on FB about her experience yesterday with yearly follow up, scans, and MO visit. (She goes to a large cancer center) She wrote of the scanxiety, the other women in the clinic awaiting their scans, etc. This woman is well known in our community and has some powerful friends.
I was moved by her post and thought "Hey, we MBCers go thru this experience every 3 months". So I posted a response. Congratulating her on clear scans and wishing her well. BUT THEN I COULDN'T HELP MYSELF--- I posted how us MBCers have this fear, anxiety, this same hospital experience EVERY 3 MONTHS. I couldn't help myself. Thru her post and the comments, I can reach and educate others about MBC and what WE go thru ALL THE TIME. People need to know some of what we go thru. DON'T FORGET US-- THE STAGE 4 LADIES.
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I think you used an opportune time to get people to at least, think about metastatic cancer. Every 3 months takes a toll on our emotions.
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Candy - Those not dealing w/MBC probably do not understand, but that is why your comments are important. I think you were right to recognize your friend's good news and to put it in perspective for those who know nothing about MBC. I'm sure our friends think we are broken records, expressing the same anxiety every 3 months. But when they ask how I'm doing, that's what they get.
BTW, I also had only 2 IV chemo tx (different drugs, neither of which I could tolerate) and switched to hormone/targeted therapies w/Xgeva. Much improvement in QOL.0 -
Candy
I think you are brave for sharing our reality. I am sure others scan anxiety is real but life for us often turns on a dime.
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Good for you Candy! Its a very worthy and valid point!
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I don't regret posting my comment on my friends' FB post. She didn't respond to it. And neither did any of the other commenters except 1---a mutual male friend that is battling Stage 4 liver cancer. He "Liked" my comment.
I guess it just got to me because the post was well worded and beautiful---describing her anxiety, the hospital setting, the other women waiting in the waiting room for their turn, her fear. And Damn It, that is what we have to go thru every 3 months, not just yearly. And that our lives depend on those results.
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So true. It can be frustrating and it seems that as many times as you explain many do not remember (most likely not listening. ) .
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Good point Candy! You probably got no responses to your comment because we are living the nightmare that she is so afraid of...
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yes cure-ious, I often don't know what to say to someone not in a good place even being stage 4 myself; it is even harder for other stages so they end up saying nothing. I remember the dread and sorrow I myself felt towards those who had metastatic BC when diagnosed with primary... I was lurking and reading their threads to know what is in store , I still remember their usernames now 13 years after ..
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Thank you ladies for your thoughts, I feel so many of them. I was recently diagnosed with stage 4 and have kinda kept it to myself. Sadly many of my friends couldn't handle the initial diagnosis and those that could seemed dismissive when I needed to vent or whatever.
I wish my friends and family would realize I'm hurting in so many ways and feel very alone. I wish people would stop asking what I need.. at this time I have no clue as my thoughts are constantly on my new dx and what my future is going to be and questioning how long it will last. I wish people knew I frequently want to cry but don't because I feel people expect me to be strong and not make a big deal about it. 😢
I hope all you strong warriors are staying safe during the Covid19 stuff!!
~Katie💗
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Ah, Penelope, this is why we stage iv people need each other so much. It is a rare person who as an “outsider” is able to hear us and understand us.
What I wish my friends knew is that I am not very bored staying home due to Covid-19 restrictions. Why? Because my life has not changed all that much. I am still trying to get the basics of housework and household business done on the little energy I have. I am not sitting on the couch in a clean and organized house with dinner in the oven wondering how to keep busy. I am still trying to catch up, same as always. I am relieved that I do not shop or drive these days because those things are exhausting. You can’t wait for restrictions to be lifted, but that just terrifies me more. I need that vaccine. I will be home until we have one.
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Shetland- I had to laugh a little when I read your post. I am one of those "sitting on the couch in a clean and organized house ...wondering how to keep busy". I live alone---with my cat---so my house is ALWAYS "clean and organized". A place for everything, and everything in its place, as the saying goes. And with the COVID restrictions, I do wonder how to keep busy. My small world has gotten smaller. I do tire easily with the cancer. And when things open, I will be continuing to stay in---fearful of catching the virus and dying from it.
Just had to comment when I read your post. And laugh--thanks for the laugh, I needed it.
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My answer to my friends are, when they ask when my treatment is over; is, "I don't know the answer. I tell them my oncologist tells me she has no idea. I do tell them I will never be free of it, but treatment keeps me, "in check." Being course never helps, and it brings me down. I know there is always hope, and I am going to fight. Live in the moment, take the good on good days. Rest on the bad days. Be an inspiration to others, and do what you love. I am not hateful, and I have accepted my "new normal." I could last 1 more year, or I could last 20 more. I want to tell my friends to not worry about small stuff, and not to take anything for granted.
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I feel you with the “you can beat this” bit. It’s not petty at all. Even worse if it’s “if anyone can beat this you can”. I don’t know how to respond gracefully to those sentiments. Its all wishful thinking and lack of knowledge. Being recently diagnosed, I Seem to be getting a lot of that. I don’t have as thick a skin as I imagine I will in time.I just want to be treated as normally as possible.
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Well meaning friends: Yeah, you are so brave. You are fighter. Just because right now I look good, I seem to have energy. I sometimes they think they have forgotten I am Stage IV. With the coronavirus I got "We all have to die sometime" when a friend decided to throw caution to the wind and get her hair cut when we went into Phase II and I said my hair could wait. Another said blithely about doing things because "Life is too short" as if I didn't already know that more than she could possibly imagine. I am in no rush to leap back into things. British Columbia is doing quite well with the virus but it wouldn't take much to tick the stats up in the wrong direction.
At least one friend tried to make it sound positive about it being treated like it was a chronic condition. Yes. It is. Until it isn't and I die.
I suppose on one level it is good they have "forgotten" because I am not pestered with questions I get tired of trying to answer.
Stay well everyone!
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Elderberry! Everything you said. Great post.
Yeah, I bite my tongue (mostly) when people talk about restrictions, not being able to do what they used to do or want to do, life changing, worrying about getting ill, thinking about dying, etc. Welcome to my life.
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I could have sworn that I posted to this thread, but I guess not. I'll preface this by saying I have a single bone met which was radiated and have been NEAD for almost 9 years. I missed 3 1/2 months of work at the beginning of tx, but have worked full time since. I have never had chemo. I look completely unchanged, so...
- Quite a few people have asked if I was mis-diagnosed. No, after my bmx and my collapsed lung after port installation, I had a biopsy. My bone met and breast tumor were identical twins. I do indeed have MBC
- When I tell folks that I am almost 9 years from dx they usually say, “Oh, you're cured, right? It's been more than 5 years so you're out of the woods!" I explain that I have been fortunate and I'm a rare bird, but cured? No, my horse is out of the barn. We're just trying to keep it from running wild.
- Although I greatly appreciate your care and concern, sending info on advances in prostate cancer, kidney cancer etc. doesn't help. Cancer is far more than complicated than that and all cancers, even within a given body part like breasts, are different.
- No one dies from breast cancer confined to the breast as breasts are not essential body parts. We die because it spreads to essential body parts, typically liver, lung, bone and brain (but it can spread elsewhere). This does not mean you have bone cancer, liver cancer etc. You still have breast cancer and will be treated as such.
- Natural cures/remedies? I have used some for symptom relief but have only seen anecdotes about supposed cures. Personally, I need scientific data, but that's just me. So rest assured that coffee will only enter my body via my mouth, I will not be juicing 10 lbs of veggies a day or swallowing handfuls of supplements. Not criticizing those who do that but, for me, having my life revolve around unproven protocols or regimen, would diminish my QOL. I also don't have a compulsive personality and some of that stuff involves too much compulsion. I simply do not want to think about how everything I eat, drink or participate in might effect my MBC as my enjoyment of life comes first. If I am going to be an outlier I fully intend to enjoy it.
- Yes, some would say I have MBC “lite". I look so completely normal that I can understand why it may be hard to believe. However I can easily make a laundry list of the negative ways MBC has effected my life but I suspect that most people don't want to hear it.
Over the years, I have had more than my share of doubters, usually those who don't know me well. I have been completely open and honest about my MBC with anyone who asks. I have lost patience with those who doubt my dx so here's what I do... First, I show my port (long story about why I have a port but have never had chemo). If that doesn't work, I start undoing my top and am perfectly willing to show my reconstructed breasts especially the left one which has no nipple. Now I've never had to go further than that but I am perfectly willing to drop my pants and show my rads tattoos which are scattered across my upper thighs (my bone met was at the top of my femur).
Yes, I am very grateful to have done so well but I am under no illusions that this will continue indefinitely which is why the mental/emotional part is such a mind f*ck. And that's the part that no one sees and very few understand.
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I could have sworn that I posted to this thread, but I guess not. I'll preface this by saying I have a single bone met which was radiated and have been NEAD for almost 9 years. I missed 3 1/2 months of work at the beginning of tx, but have worked full time since. I have never had chemo. I look completely unchanged, so...
- Quite a few people have asked if I was mis-diagnosed. No, after my bmx and my collapsed lung after port installation, I had a biopsy. My bone met and breast tumor were identical twins. I do indeed have MBC
- When I tell folks that I am almost 9 years from dx they usually say, “Oh, you're cured, right? It's been more than 5 years so you're out of the woods!" I explain that I have been fortunate and I'm a rare bird, but cured? No, my horse is out of the barn. We're just trying to keep it from running wild.
- Although I greatly appreciate your care and concern, sending info on advances in prostate cancer, kidney cancer etc. doesn't help. Cancer is far more than complicated than that and all cancers, even within a given body part like breasts, are different.
- No one dies from breast cancer confined to the breast as breasts are not essential body parts. We die because it spreads to essential body parts, typically liver, lung, bone and brain (but it can spread elsewhere). This does not mean you have bone cancer, liver cancer etc. You still have breast cancer and will be treated as such.
- Natural cures/remedies? I have used some for symptom relief but have only seen anecdotes about supposed cures. Personally, I need scientific data, but that's just me. So rest assured that coffee will only enter my body via my mouth, I will not be juicing 10 lbs of veggies a day or swallowing handfuls of supplements. Not criticizing those who do that but, for me, having my life revolve around unproven protocols or regimen, would diminish my QOL. I also don't have a compulsive personality and some of that stuff involves too much compulsion. I simply do not want to think about how everything I eat, drink or participate in might effect my MBC as my enjoyment of life comes first. If I am going to be an outlier I fully intend to enjoy it.
- Yes, some would say I have MBC “lite". I look so completely normal that I can understand why it may be hard to believe. However I can easily make a laundry list of the negative ways MBC has effected my life but I suspect that most people don't want to hear it.
Over the years, I have had more than my share of doubters, usually those who don't know me well. I have been completely open and honest about my MBC with anyone who asks. I have lost patience with those who doubt my dx so here's what I do... First, I show my port (long story about why I have a port but have never had chemo). If that doesn't work, I start undoing my top and am perfectly willing to show my reconstructed breasts especially the left one which has no nipple. Now I've never had to go further than that but I am perfectly willing to drop my pants and show my rads tattoos which are scattered across my upper thighs (my bone met was at the top of my femur).
Yes, I am very grateful to have done so well but I am under no illusions that this will continue indefinitely which is why the mental/emotional part is such a mind f*ck. And that's the part that no one sees and very few understand.
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I finally responded to a woman from our church who kept emailing me and reminding me to "stay positive" so that I can beat this disease. She wanted to know when I would be through with treatment. I finally told her I'd be through with treatment when I died of this disease.
"Staying positive" may help me feel better, but it won't cure this disease. And when I do die, will it be my fault because I wasn't positive enough?
I actually don't care what people think. They're not fighting this battle. My husband and I are trying to make the most of each day and are hoping that we have many more days together.
I'm grateful to have this place to share my thoughts and to hear what others are experiencing.
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Sunshine99: If staying positive was all it took we'll all be living to 99 regardless of our age at DX.
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Right, Elderberry! Some people will never get it, though.
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I would like my friends and family to know - like them- I no longer have the promise of tomorrow and all that comes with planning for tomorrow.
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What I want people to know about me and MBC? It's all a façade!
I've been told that by the way I look and the way I sound, that unless someone told you I had MBC, you would never know. I am told I am strong, I am brave, I have the best attitude and attitude is everything. It's only been a year since diagnosis but it feels like forever.
If you peel away the layers you find a woman who has lived a good life and has a great family, one that has made her peace with death and is unafraid. Dig a little deeper, and you find a woman who is pretty matter of fact about the whole cancer thing. It is what it is. Accept and move on. Treatment quit working? Again? What's next? Dig deeper and you find a woman who is now keenly aware of her body; every ache, every pain, slightly swollen ankles, new bumps, old bumps, my liver, my back. Silently keeping track and determining what is worthy of a mention to the PA during weekly visits. Peel another layer and you find a woman who shows up for tests and scans with a bravado that dares the machines to find more growth, new tumors, while silently praying for NED, if only for a little while.
Keep peeling, layer after layer, until there are no layers left. And there I will be, still unafraid but somewhat sad:
- Acutely aware that I have MBC and it will one day kill me;
- Squelching the panic while I wait for scan results;
- Wondering if the next treatment will work for longer than three months;
- Wondering which treatment will finally "take down" the chemo queen;
- Wishing for NED but knowing that may be an elusive dream;
- Hoping to beat the odds and live longer than the average
The happy, stoic, warrior woman? It's all BS. Every now and then, when someone asks how I'm doing, I just want to say "Cancer sucks and it's a crappy thing to live with day in and day out". The reality is that most people can't handle when we are "real".
I know that one day I will be tired of the fight. But that day isn't here yet.
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Vbishop, what you wrote here is so eloquent and so accurate. I feel everything you said, except that I have not made peace with death.
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ShetlandPony -
Believe it or not, I made my peace with death when I was first diagnosed with breast cancer in 2013. Even though, at the time, my prognosis was great, I accepted the fact that my body is a cancer magnet (skin and thyroid too) and one day one of these cancers is going to do me in. Am I ready? No ... I prefer to be around a bit longer. But I am not afraid. It isn't for everyone, but I have found a certain peace, a certain calm. It's liberating!
I notice you are on Eribulin. That is the chemo I am currently on. I've made it through 3 cycles so far. PET tomorrow morning. Hope its working!! I fear it might not, as I am feeling my liver more these days. Regardless, I am ready for what comes!
Wishing you the best during this journey!!
I blog my journey for family and friends. It helps keep me sane ... and hopefully inspires or educates others along the way.
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I have not made peace with cancer or death.
But I don't have a problem being real; idgaf if people like it or not. I don't do brave facades; I tell people it sucks and it's awful. I also say that when doing stage 1 tx I read on bco "you don't have to be brave, you just have to show up" & that's been me at every appt since..not brave, just too stubborn to quit yet
What I wish more people knew and understood is that it's really terminal.
& that many of us are deeply angry about it and we're using our energy to stop ourselves from screaming, so no, we don't have energy for positive thinking or making anyone feel better about it.0 -
Moth, I admire your no bs attitude. How do people take it when you tell them it’s awful? Does it seem to make anyone avoid you or get weird? That is my fear.
A friend just texted me wishes for a speedy recovery. Thank you. Sigh.
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I hate it when random people tell me why didn’t you see doctor sooner.. are they trying to make me feel guilty about it??? I hate it when so-called friends lecture me to be positive...I am not sorry but I can’t be fake positive thinker only because they feel better about my mbc. I hate it when people use me as an example, more hate when some people that I have to deal with them quite frequently bring it up that they know someone who died from cancer or easily they say it is what it is:some die from virus some in accident some cancer.. these idiots can’t tolerate one of dozen side effects of mbc medications....... how easily these idiots discourage me of everyday battles.. it is not fair... when a bunch of pain killers help me to get some rest, some label me that I am lazy.. it is not fair... it is not fair when people tell me that I am obsessed, only because my alarm reminds me it is time to take medications.. they won’t understand how awful foggy head is, and I am sick of repeating myself...
I am sick dealing with stupids.. so what I am doing is that write my journal, I think the only person understands me is myself!
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