What you wish your friends knew
While you may have been able to educate your close family members about the reality of the disease, you might find that your friends and acquaintances don't quite grasp what you're going through. Have you experienced this? If so, what do you wish your friends and acquaintances knew? Thank you for sharing your insights!
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Lots of educating the public to MBC still needs to be done. There is a Thread called "Myths/misconceptions about MBC" that has covered this issue.
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I would like my friends to understand that once you are diagnosed as metastatic there is no end to treatment. People still ask me when my chemo will end. I try to explain, but there seems to be no understanding of the continuing nature of metastatic disease. People need to be aware that chemo effects quality of life and can cause serious continuing health issues. The commercials on TV that show a normal looking person (complete with hair!) assuming the new normal of MBC are misleading. It is a much bigger struggle than what is shown.
Also, people do not understand how you can have breast cancer that is located in your lungs or other areas.
Not to mention the costs of having treatments, specialists and tests/scans. It is all overwhelming.
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Early stage women just don’t get it, not to mention those who’ve never had a brush with cancer. All those people either overact to a favorable diagnosis (oh no, how long do I have before I die?) or minimize the very real fact that metastatic disease will quite likely be the cause of death by asking how can you think like that, you look fine!
So, friends need to understand that a tumor which has not spread beyond the breast is not going to kill anyone while malignant cells lodged and growing in another location are deadly.
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I think my thoughts will echo what others have said, but I will add them anyway. I was diagnosed Stage IV, 3.5 years ago. In the beginning, I had chemo, radiation, herceptin and perjeta. Currently, I receive herceptin and perjeta every three weeks along with Zometa every three months and Femara daily. I find that most people forget that I am fighting cancer, which can be great. I sometimes have to remind people that I am not cured and the best I will ever be is stable, which I have been for a while now. Also, when I was first diagnosed I was pretty sick with mets to liver, and almost all bones including skull, ribs, spine, pelvis and femur. People wonder how I could "really" have been in such a bad way when I seem perfectly fine today. Sometimes, it is exhausting to explain exactly what MBC is and how the disease progresses - sometimes very quickly and other times slowly or not all all.
Just a few thoughts..
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I think my thoughts will echo what others have said, but I will add them anyway. I was diagnosed Stage IV, 3.5 years ago. In the beginning, I had chemo, radiation, herceptin and perjeta. Currently, I receive herceptin and perjeta every three weeks along with Zometa every three months and Femara daily. I find that most people forget that I am fighting cancer, which can be great. I sometimes have to remind people that I am not cured and the best I will ever be is stable, which I have been for a while now. Also, when I was first diagnosed I was pretty sick with mets to liver, and almost all bones including skull, ribs, spine, pelvis and femur. People wonder how I could "really" have been in such a bad way when I seem perfectly fine today. Sometimes, it is exhausting to explain exactly what MBC is and how the disease progresses - sometimes very quickly and other times slowly or not all all. Not to mention, how it will ultimately lead to my demise. Oh and one more thing (petty I know) "well, you've got a great attitude. If anyone can beat this, you can!"
Just a few thoughts..
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I think my thoughts will echo what others have said, but I will add them anyway. I was diagnosed Stage IV, 3.5 years ago. In the beginning, I had chemo, radiation, herceptin and perjeta. Currently, I receive herceptin and perjeta every three weeks along with Zometa every three months and Femara daily. I find that most people forget that I am fighting cancer, which can be great. I sometimes have to remind people that I am not cured and the best I will ever be is stable, which I have been for a while now. Also, when I was first diagnosed I was pretty sick with mets to liver, and almost all bones including skull, ribs, spine, pelvis and femur. People wonder how I could "really" have been in such a bad way when I seem perfectly fine today. Sometimes, it is exhausting to explain exactly what MBC is and how the disease progresses - sometimes very quickly and other times slowly or not all all. Not to mention, how it will ultimately lead to my demise. Oh and one more thing (petty I know) "well, you've got a great attitude. If anyone can beat this, you can!"
Just a few thoughts..
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What I wish my friends knew is that the internal struggle to deal with all the emotions involved with this disease can be devastating. While I do speak about my experience, I don't constantly complain or share the anguish with everyone. When I hear someone say "but you look amazing" or "I would never guess you had been through surgery" I wonder what they were expecting and the fact that they are looking at the physical just shows that they have no clue of the real struggle. They didn't see me on the days when I couldn't get out of bed or puking into a pan by the side of the bed. They didn't hold my hand when the doctor gave the diagnosis and my whole world started crumbling. They didn't hear me screaming at God, at the world, at life to release that built-up steam of emotional turmoil. I wish they would just say "I don't know what you've been through but I'm here for you now." Just hold my hand or give me a hug. That's all. No expectations, no judgments, just love.
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I wish my friends had known that I didn't want to talk about it until I felt strong and to find some empathy for what I was going through.
I had two friends get upset with me (after I was already fighting cancer) because I asked them to call my husband and ask about treatment, etc. especially in the beginning instead of always calling me. They would call, and I would be pulled out of a place where I WASN'T (for once) thinking about cancer or the abject terror I was feeling, and I would get terrified all over again, because they reminded me of my dx. I would also get anxious having to recall and tell them how it was going. Finally, they were worried about me, and I felt they wanted ME to reassure them I was going to be okay. It was an added stresser. When I directed them to check in at caringbridge.org, where I could choose to update everyone during the times I felt strong and able to do that, they got upset because they felt like they needed special 1 on 1 tx since we were close.
After all this time, I am still sad they refused to find some empathy for me during that time of sheer panic and sadness.
Claire in AZ
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What I Wish for My Friends to Know:
At Stage IV with liver mets, that I will always have cancer.
It remains hidden when under attack from treatment, but it doesn't go away.
I may look normal, but my body fights everyday..everday single day.
Please don't tell me it is like living with a chronic disease.
Please don't tell me we can get hit by a bus, as if death catches everyone off guard and that is suppose to cheer me.
Please don't tell me what treatments I should try based on the newest fads.
Please don't plan a full day of activities that include nonstop walking, especially after I tell you I have fatigue that puts me in bed for several days.
Please respect when I say to dinner guests that it has to be an early night, like 9 pm and you stay until 11 pm.
Please just give me a hug and ask if my day is going okay. That validates I have emotional pain and have to face a shortened lifespan and that you care.
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SandiBeach- Koodos. Yes. You summed it up wonderfully. YES YES YES
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SandiBeach57, agree with Candy- you have summed it up nicely! I would like to add one more thing to this list.This is probably already addressed in the other similar forum "Myths/misconceptions about MBC":
I know you mean well, but please stop telling me to try all these 'herbal regimens' because someone else tried it and was completely cured of cancer. Each cancer is different and each person reacts differently to the same treatment.
JCSLibrarian ,I get the same question all the time from friends and family - when will you be done with treatments? We are waiting for you to get back to your normal self.
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I wish my friends understood that "lesions in the bone" or "lesions in the liver" mean "I'm a gonna die from this". I hate explaining that I have a terminal disease. Or that I'm slowly (very slowly I hope) dying. Just hate it. Did I mention that I hate it?
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Everything I was going to say has already been covered. I wish they understood the whole thing better. "You're going to beat this" no, I'm not. It's never going away and someday it will end me. "when are you done with treatments?" I'm not, this is my life now, doctor appointment after doctor appointment, Echos, CT's, bone scans, PET scans, treatments every 3 weeks. "Is your hair ever coming back?" Apparently not, thanks for noticing.
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Almost everything has been covered already, but having just had to tell people about having to switch treatments, I really wish people would just say "this stinks, I'm sorry that this is happening" rather than trying to force me to see the positive. Let me have some time to process and let me talk bout it. I am generally positive, but when there is a set-back , I need time to process it and come to grips with the new reality.
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Even if people understood that this was a terminal illness that is one thing they NEVER understand. That the words "new drugs" are not good news. They do understand that good and bad and neutral scans are what they are, but one can never just say 'switching treatment'.
But. I'm not feeling a grumpy as I was above. So in a way I'm glad that they don't know. It means that they've never needed to know. Never had a friend/family member die of cancer like this. That's good. I'm happy for them. Really I am. I just don't want to be the educator.
Heck right now I'm the educator for a whole bunch of doctors too. The ones I work with. At least they understand what's happening. But rarely have they watched it happen (they're not oncologists). What I'm teaching them is that you can live with this disease, not simply die from it.
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Pam,
I am sure you are having a powerful and lasting influence on those doctors through your example.
Tina
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I get tired of explaining to my friends that I will still be on treatments even if I am NED. They don't understand that stage 4 is not curable.
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I must confess it is difficult understand even for me. How do we know it is not?
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I wish I knew my mastectomy breast implant was going to give me man made cancer called anaplastic large cell lymphoma. I wish I knew when I got the symptoms I could find a doctor who knew about my new life threatening cancer. I wish this new cancer didn’t eat my ribs. I wish I knew that the subsequent chemo CHOP would give me permanent heart failure.
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Oh Carol..
You bear many burdens. Please feel and imagiine my hug.
S
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I wish my friends knew that what I really need help with is things like remembering appointments, filling in insurance forms and having an extra ear when I get the important diagnoses. Yes, we do look great (I am convinced that chemo is removing my wrinkles!) but we only get to live life during the three month intervals between scans. As for how we are really doing I try to explain it like climate change-things are moving slowly towards catastrophe but there are a lot of ups and downs along the way. I also wish I was not expected to be positive or hopeful all the time--this is not expected of healthy people!
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Arolsson, do you have friends who ask "how can I help?" Because often people do. Tell the next person who asks you that, "Yes, you can help! I need help filling in these forms!"
It's really hard for us to ask for help, but sometimes it's necessary.
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I wish friends realized that I am aware of complimentary treatment for breast cancer.
Many of us have friends and family who send us articles and books or try to steer us into watching videos of the latest anti-cancer guru talk about how you can beat this disease. But they never seem to come right out and ask what our personal beliefs are on the topic, or if we use any complimentary treatment. They don’t even know what kind of conventional treatment we’re getting let alone if we’ve added additional complimentary ways of dealing with mbc.
So it’s kind of like they act like we’re dumb. Like we can’t do our own google searches. They don’t ask what books we’ve read or supplements we take. I know they mean well, but it can come across as insulting.
I wish friends recognized that I’ve done well on conventional treatment instead of casting doubt on it, like maybe I’m not doing enough.0 -
I wish my friends would give my DH a hug once in a while. He silently suffers as he knows the real possibilty of life without me.
He told me he was jealous when I spend time with girlfriends, volunteer activities, (even grandchildren) as that is less time he has with me.
Please friends and family, he needs you, too.
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That’s a good point that isn’t often mentioned, SandiBeach. Our cancer centers need to know this, too, and offer support groups for partners/spouses, and for couples. And let DH sign up for a free massage, too. Etc.
Another thing I wish people knew: Often, hair is the least of our worries. Please don’t think our having or not having hair tells you how we are doing and how we are feeling.
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I have a friend ( who doesn't know I have cancer)who told me her good friend just got diagnosed with stage 4 lung cancer (non smoker) and was totally shutting down and shuttingher out and her friend’s DH was a mess. I gave her a lot of advice on how to help her friend. It was all news to her and she is a great, sweet, empathetic person and she knew none of the things I told her. She has really been able to help her friend now. Just to say- we need to help our loved ones help us in the ways we need.
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My closest friend, well more of a sister, of over 20 years has just been diagnosed with her breast cancer having spread to her lung - a month after her confirmation it was gone from her breast. I'm devastated. I've joined this forum for advice on how to talk to her and what support she needs. What words to say, how to react around her. Thank you for your advice above
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Dear suellanfowler, we are so sorry for your friend's diagnosis and all you are going through, but we're so happy you decided to join in, welcome!
Besides this fantastic thread, we encourage you to check out our For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis forum where other friends, family members and caregivers of persons having a stage IV breast cancer diagnosis can talk, exchange and support one another. We know is hard, but you're not alone!
We look forward to hearing more from you and your friend soon!
The Mods
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I so agree. Our DH's need hugs too. They are frightened by our DX. They get exhausted trying to do whatever they think is right for us. Sometimes they are at a lost at what to say or do. Our friends are also at a lost We can't really expect them to understand something that they cannot comprehend. They want to believe we are "warriors", that a "new drug" is just around the corner, that our positive attitude will save us. Gently educate them but cut them some slack. How smart were we before we found ourselves shipmates in this leaking, rudderless boat?
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Elderberry, spot on. I cringe to think of the things I said or didn't say, all the things I didn't do, before I knew (at least a little) better. I have been trying to teach people how to respond more generously to our circumstances. And by "generously," I mean with more warmth and less criticism. If we don't help them learn, they won't, until they're in a similar situation.
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