What you wish your friends knew
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TeriAngel- my feeling exactly - hug
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Well said Sandibeach and everyone.
I’m glad to know that I am not the only one who sometimes struggles to feel the support from friends when they say things that are well meaning but sting. A lot of people in my life keep calling me a strong fighter but don’t realize that I am not always strong and despite all my fight I’m eventually not going to win.
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I'd like my friends and family to know my life is about so much more than breast cancer. I'd like them to see me in in the light of my whole life, not through the lens of bc.
Rather than feel sorry for me, I'd like them to admire me. I've continued living a full life after my diagnosis. I've hosted many family gatherings at my home as well as attended many gatherings at others' homes. I've been to wedding showers and weddings and baby showers. I've celebrate births, high school graduations, college graduations, retirements and more. I've tackled home improvement projects and taken some beautiful vacations. I helped move my mother in law move in across the street from me and helped take care of her for three years while helping her sell her house. I've taken numerous family members to and from the airport, doctors appointments and hospitals. Yes, the bc part sucks and I have my down times with it . But I don't use it for drama or to detract from the things going on in the lives of my loved ones. If I have some no-so-great news about it, I won't reveal it in the midst of a family celebration so all eyes are on me and ruin the occasion. I try to find the right time to bring it up.
I still enjoy a good piece of gossip. I still enjoy a great bargain. I love the pool on a hot summer day. I love a binge-worthy Netflix show. I live for a really good book that I can't put down.
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Divine Mrs.M, loved your post! So true.
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Oh my gosh I had such a disappointing conversation today!
A friend of mine (Amy) who lives in Italy heard from another friend that I have mets. Amy was a major go-to person for me when I was initially diagnosed back in 2015 because she went through the entire BC saga herself, she was just six months ahead of me. She was a wealth of information, and I really appreciated her.
I saw her this summer; we met in Colorado with another friend. She naturally got treated in Italy and her doctor had prescribed to her a specific amount of exercise each week and apparently gave her strict dietary orders (she was already a vegetarian) and weight restrictions. Amy is an over-achiever type so was militant in both her exercise regimen and her spartan diet, all of course with the goal of avoiding recurrence.
The bad news was that she was definitely judging me for being a tad on the pudgy side at that point in time (like maybe 7 pounds more than ideal) and not a size 2 like her. She also managed to lecture/"share with" me about all the random dietary stuff she's doing like avoiding dairy and sugar and taking random "natural" supplements and of course her 2.5 hours per week of rigorous exercise.She likes to compare what her doctors are doing vs. mine, which is good and interesting, but it always seems like she thinks her are superior because she does more stuff like regular scans, blood markers, etc. Where I live, the doctors seem to agree that doing a lot of scans isn't particularly more effective and in fact just exposes the body to too much radiation. Of course I had annual mammos, but beyond that, they did scans based on changes/symptoms not just a matter of course. ( I did have appointments with the oncologist, surgeon, and radiation doc every 4 months or so for the first 2 years after my initial treatment finished.)
Anyway, I hadn't told her about the mets because I KNEW she would end up hurting my feelings/stressing me out/causing me to regret my (actually rather healthy) lifestyle/question my doctors. When I reached out to her, I wanted to be in a good emotional place for that.Her initial email to me when she heard about the mets was what kind of what expected, but it was still very off-putting and rather hurtful. Instead of being compassionate and kind, she wanted me to explain my symptoms and what I'd been doing -- basically so she could avoid doing that herself.
I felt like all I was just a cautionary tale for her, instead of one of her dear friends faced with an incurable disease.
She was also pushing me for details of my treatment and giving me random advice about it and what I "should do" -- like she actually knows more than me and my team of doctors about my case. It was insulting.
The good news was that I spoke my truth and called her out on it. She did apologize and I said it was OK and all that. Ultimately, I know I shouldn't have specific expectations on how people should react to my health situation, but I was still surprised at her cold, clinical response. I thought as a sister "Warrior in Pink" she'd be more empathetic when it came down to it. But she wasn't and it was hurtful.
Goodness, I'm totally rambling now. I hope that perhaps me writing this will help me let go of my resentment toward her.My best to all. I love this forum!
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AnneMarie,
I hurt for you just listening to your story. I know how hard it must be to be treated that way by a dear friend. All I can say, in her defence, is she’s frightened. People grab onto the things they can control. If I do X and Y I won’t have a recurrence. Unfortunately they are kidding themselves. Not to say that everyone diagnosed with B.C. is doomed. Far from it but the reality is we are a long way from being able to figure out why some people recur and some do not. It’s a crap shoot.
I know it hurts to be treated that way. I loath the blame game. Focus on yourself and forget about those who judge from a place of ignorance.
Sending hugs.
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Sending hugs to all of you, and thanks for your insights in creating this blog:
What I Wish My Friends Knew: Insights From Our Stage IV Community Forum
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The thing I wish I had known and now try to educate others about is that breast cancer is not ONE disease. Treatment and prognosis is different for each type. A friend recently told me her other friend w bc now has lung cancer. After exploring this w her, I explained that her friend has bc that has metastasized to the lung. I didn't understand this either until my dx.
With Breast Cancer awareness being such a big deal, it seems they are missing the mark if so many of us are ignorant about the many paths of bc until we are diagnosed.
I am not stage IV and can only imagine how it must be w these issues. I’ve had my own eye opening education and frustration w comments that are well meaning but so dismissive in many ways. I keep telling DH when we hear these comments, “the road to hell is paved w good intentions “.
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when I share my grief for having unsighty bulging veins on one side of my neck as a result of blockage of one of the internal jugular veins (consequence of port ) not to tell me I could cover my neck with a creative cute scarf. I used to have and still have great shoulders and neck , I am not into accessories , I am grieving loss of part of me that I loved. It looked ugly and old to me when I look in the mirror- I can not cover it with scarf from myself !
When I talking about my falling hair I do not want to hear that it will grow back - it is effing falling now !! We are all going to die but we do not mourn it every day ( unless we can feel its breath down our necks as many stage 4s do) - I know it is going to grow back but it is not about what is going to happen one day ! Specially as with me being stage 4 it is from given that it is going to as many of us are on and off chemo till the end of our lives .
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Ladies you all hit it right on. I like for my friends to know that distance is not the answer. Interaction should not be based on my outer appearance. My journey is unique to me. I don't want to be compared. Just because I have energy today does not mean I no longer have cancer. I would just like to be treated as a person not a patient. I could go on and on but I think this is a good start...
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That the only way to cheer me up is still gossips:-))
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Preach Anotherone! Your post hit me right to the core. I feel you on so many levels.
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I had this epiphany that your loved ones want to hear that you are doing great- bucking up etc- they don't want to hear that you grieve this or that or don' t feel good. YET- they will be angry if you don't tell them stuff. kept things from them. I feel between a rock and a hard place . I am keeping stuff to myself until the true S hits the fan. I do admit that I am much more sympathetic to other peoples pain- to acknowledge it and not offer dismissive unuseful solutions- just services or listening. I've have learned a lot by living it.
Have a lovely day everyone!
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Yes Nkb , I regret every single time that I myself have been dismissive of someone else's hurt.
DivineMrs, re complementary treatments- I just now noticed what you pointed before - friends must be not bothered to go into proper research and reasoning for us ; they just forward any mention of anything, a lot of which is tabloid press twisted story. If they want to help why not to research the topic of some complementary/alternative stuff themselves, telk us they have done it and ask when would we be ok to talk about it. Instead of bombarding us with those stuff and task us with weeding through it .
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What do friends think? They have NO idea, even when told. I've failed 2 chemo drugs (debilitating side effects) and am trying something else now. They just think I'm on a drug, so must be getting "better". Can't get them to understand there is no "better" to be had. Have no idea if drugs will so anything and won't for 3 months until they do more scans and see how much tumors have advanced and if lung damage is permanent. But keep getting question "how are you doing?" Maybe I'll start answering "still slowly dying."
This is my modis operandi. I only dress if someone invites me out and I have to put on clothes, wig and eye makeup and pretend I'm not me. Go to restaurant and order smallest appetizer that isn't fried or spicy. Or just order what I think I can eat and take other half home. Works for 2-3 hours, then I come home and put on pj's until next public requirement. Spend afternoons in bed with draperies closed (can't enjoy outdoors anymore, don't even walk outside if I don't have to, too much bother). Friends want to go shop for boots, clothes, earrings, I couldn't use up what I have, so don't have any interest in new stuff. Would like to give away alot of stuff I know I'll never use again. Host dinner party? Not happening.
Last night a woman I had just met told me the onc was wrong to tell me not to ski (I have bone mets and collapsed lung). She had had knee replacement and was "just fine". Totally clueless.
Sorry to rant, but this did help me figure out that "frequently wrong, but never in doubt" people may be one of my biggest complaints.
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I’ve thought about this a lot. I think having friends with stage 4 cancer helps - they seem to get it. I feel like when those who do know about my cancer say “ how are you” the answer they want is I am great. They want no details and no downer information. I think this is driven by fear. I don’t tell anyone new about having cancer -not for years. It just makes it worse. Even the hospital cancer support group doesn’t get stage 4- they whisper about the person like they are already dead. The only people I know who want to talk about it in a helpful way have stage 4 cancer also- or one of my friends who is a therapist. I am trying to do better hearing people tell me their pain without trying to whitewash it or give them advice.
Don’t get me started on the advice people give!
I hope everyone is having a good day today.
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thanks for replying! I do have many dear friends but have learned the hard way the difference between good friend and "caregiver." I have a phone list of about 9 people who have assured me that they would do anything, anytime. The times I've been in real need--like needing to go to the ER--all of them have sent lots of happy emojis with the hope and assurance that someone else will surely help--because alas, they have theater tickets, a date, late at work, or even one told me was tired and planning an evening in front of the TV.
It takes me so much bravery and energy to ask for help that I only ask once, it's far more hurtful to be "dissed" than to somehow manage to do it myself. (Not to What you wish your friends knew"--be VERY clear about what you help with but also what you can't. No single cancer patient expects you to be there the way a relative would, but if you are going to (politely, with hugs) refuse help just because you don't feel like it, PLEASE DON*T OFFER TO BE THERE IN EMERGENCIES!
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Your story sounds familiar. Friends DONT understand, luckily the ones you know best will at least stop asking when you are "done." after the first year or so.
Interestingly the folks very close to dying seem to find some kind of peace and acceptance, I prefer this to being told to "fight" all the time. So my goal is to find peace and acceptance while still having some time left. In the meantime, doing things like giving old clothes away or getting bank accounts in order helps some, though I can only do it in doses. Sending you the very best wishes, don't hesitate to contact me if you want. /AM
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That I'm lonely and would appreciate a call, email or text just to ask how I am doing.
That my disease is not curable.
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lainey64- that’s my daughter’s name ( minus the 64)
Reach out to your friends and others to connect. Seems like everyone is lonely and having trouble staying connected. Think of ways to connect with them, you call, text, email to make dates.
Take care
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Thank you, Nkb.
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When I learned that I had metastatic disease, my sister bought this book for all my family members:
When Life Becomes Precious: A Guide for Loved Ones and Friends of Cancer Patients by Elise NeeDell Babcock
I have shared it extensively with others trying to support their loved ones. I have learned in my almost 13 years of fighting metastatic disease that friends and family want to help, but often just don’t know how. I have learned to teach, rather than just rage.
Meme
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This is harder to answer than I thought, but the reality is, coming around to the fact that my cancer isn’t the only thing going on in the world of my friends and family has been the best anecdote to my wishing people acted differently or knew how to act or what to say to make me feel better. They care and they love me and that’s enough.
I’m fortunate because I can pour my heart out to my Lord God and let Him know how disappointing it can feel some days when no one calls etc.
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Just because I don’t show it on the outside, that doesn’t mean I’m not in pain, frustrated, sick and tired of hurting or scared out of my mind.
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Posting this on day 5 of feeling lousy from my new drugs and staying home near the bathroom.
I wish my friends knew this: I am lonely and sad. I want you to come and see me more often. You don’t realize how quickly the likes of me could go downhill. Also, I am afraid of becoming a downer and an obligation rather than someone you want to visit or talk to, so that is why I don’t tell you the first two things.
I know they have lives to live, and they do not have the sense of limited time, the necessity of seizing the day, that I do. It is easy for them to put things off and count on a chance to do them in the future.
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Just read a few posts, back to my own in Dec. I was really in a funk. Apparently I also projected this to MO @Jan visit and she put me on Lexapro. I was hesitant, but after only 2 weeks, I was feeling better. Doesn't help with mets, but helps with my outlook toward them. When friends ask what they can do, suggest they pick up lunch, bring it over and visit for short time. Provides a little entertainment without much effort. This disease focuses our attention on our relationships, and makes me wonder how many people I didn't pay enough attention to when they were in a similar need.
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Shetland- I am just now seeing your post. I wish I could come over to your house today and spend some time with you. I feel your loneliness. I posted on the My Life, My Family... Thread that today I went to my MO appointment and they had a basket of painted rocks on the desk. They were free to take 1. I chose one that said "U Are Not Alone". I needed that. I was alone for the office visit, as I always am.
Hugs from me to you.
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What I want my friends and family to know.
I struggle every day to block out the shadow of the grimm reaper.
It is hard to make plans not knowing where you stand with your health from week to week, cycle to cycle, treatment to treatment, scan to scan.
You think about cancer all the time. But if I start to talk about it, please listen, just plain listen okay? If I cry, hug me.
Sons...don't forget to check in on your mom.
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I hear you all. It's lonely and hard to plan. I also hold so much back knowing that nothing good will come from the person knowing this fact, reality, secret- but, so many relationships do thrive on sharing these intimate things. It's such a conundrum. I am working on reaching out, joining something ( not a cancer support group)
Shetland- your post made me reach out and text an acquaintance in my yoga class who has leukemia to see if she wanted to take a short walk next week. I got an enthusiastic yes. She told me that she always felt it was a badge of honor to live alone and be super independent - now it is hard and lonely
hugs to all. Even though my health is transitional right now- I am still planning a trip with my daughter in the fall. Travel insurance will be my new companion.
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Candy, if we only had the ability to apparate à la Harry Potter, I’d have you over today! We would sit outside and watch the birds, and drink herbal tea. And then we would go inside and talk some more and find out all we have in common.
Nkb, yes, it is a stage iv problem that is kind of a catch 22. Not talking about it puts a distance between us and our friends. The space between us harms intimacy. But talking about it may be more than they can handle. And it takes away a non-cancer place we can go. And it can feel cruel to try to make them face it.
How lovely to make plans with your yoga classmate!
Sandi, how much should we block out the shadow and how much should we turn and face it? Which takes more out of us? I do not know. Lately I notice him more. As for listening, even in a local stage iv support group, I have been cut off with admonitions to be positive and grateful!
Do make your plans, including vacation plans. Change them when necessary. I traveled out of state with my daily IV antibiotics and I am glad I did.
Nopink, I decided recently not to feel bad that when I see my friends, they are usually the ones to drive to my place, and often to bring the food. If I am feeling up to it, I take them to lunch nearby.
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