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The elephant in the middle of the room

Beachbabe
9 Recommendations

I am so sick of nobody wanting to talk to me about the fact that I have Stage 4 cancer...except for other Stage 4 cancer patients! My family and friends, for the most part, find it too "painful" to discuss the possibility of an untimely demise. When I try to broach the subject I get a lot of "Oh that won't happen." or "But you're doing so well." Yes, for the most part I am doing well. BUT I live in fear and pain--both physical and emotional. I've seen several close friends die from this beast. I would just like someone to acknowledge the possibility of what's on the horizon. I don't want them to candy coat reality. I want them to support me and my decisions, but don't condescend so much as to try to convince me this isn't a problem...it's a BIG problem. Anyone have any pointers on how to get those closest to them to talk about these things?

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62 replies

katzmeow

You are not alone, so many of us experience the same exact situation. I wish I could offer advice on how to handle it because I have been Stage IV since April 2002 and am no longer stable on Xeloda, having exhausted all the aromatase inhibitors, etc. My years of feeling and looking perfectly healthy have given everyone the misconception that I am "cured". In fact, I no longer talk about it to my relatives. My husband's brother and his wife, both psychologists, advised me was to consult with a particular Tibetan Buddist Monk on his trips to Manhattan . My best friend and her husband suggested I stop all Western medicine and take Chinese herbs. My one and only sibling (sister) can only deal with the subject by ignoring it, and my husband and son are in denial because I am doing so well (so far). I work in a large courthouse and all the people who are still there since I went through IV chemo in 2001, think I am cured. My immediate co-workers cannot relate on any level so I never approach or discuss the subject. The only support I have found, is from others with Stage IV and my psychiatrist who specializes in treating patients at a cancer center in CT. If not for him, I often think I would go crazy (no pun intended) due to the lack of being able to share my situation with anyone. This subject strikes a raw nerve because even in the breast cancer support groups I have joined and quit, none of the women can relate unless they are in a similar situation. We are "surviving with it" and most people, even other women with BC can not relate to us. Thanks to this website there is a valuable forum to post our thoughts. I met a woman on line who feels as we do, and all her friends tell her to basically grin and bear it, get out more and cheer up. So, in the long run, my way of dealing with it is to put on the "happy face" at work and just forget about it until the evening, when the harsh reality sets in big time. Some people find that their friends and relatives rally around them and offer tremendous support. If people ask me direct questions I am glad to answer, but otherwise, talking about it sometimes opens the door to some highly inappropriate and seemingly unsympathic remarks from others. Over these past 7 years, I have been leading a double life: the healthy persona vs the tormented soul. Keeping a journal is helpful for me. Hopefully we will all find "inspiration" from these discussions.
Take Care,
Linda H

DragonflyDream

Yep, me too. I have only had mets since last August but it is so hard to speak to my friends and loved ones. Like you two, they say things like oh no, you are fine, and that will no happen, blah, blah, blah. And while they mean well it hurts that they don't want to hear my pain and fears and so I to put on a happy face.....


"But seriously, I am refusing to accept the expiration date the docs want to give me and I am living on the best that I can, filled with hope and dreams. "Wish it. Dream it. Do it!" ~Alice Kitselman Rivera"

JoAnn06

Yes, Beachbabe, there can be an "Elephant in the middle of the room".

I have learned that educating those around me to the advances in Stage IV breast cancer and letting them revel in the fact you're "living " with advanced breast cancer, is an incentive for discussion.

Does anyone feel the same as I, that those who've not been "touched" by cancer, whether it be themselves, a family member or friend, are so afraid of the word "cancer" they can't even say the word and shy away from discussion? There are also those who've had loved ones die from the disease and are scared to death it may happen to them. The latter was my experience, until I was diagnosed, and decided to educate myself and fight like hell!

Years ago, I told a dear friend I had cancer, she literally jumped back (as though I was contagious) and refused to discuss the issue. Fortunately, she is the only person I've told who reacted negatively.

My faith, husband, family, friends, and forums such as these, have sustained me throughout the years, and given me the inspiration I need to be the advocate for breast cancer awareness, to include breast cancer metastasis.

I believe in educating everyone I meet, or any stranger who asks about my bald head. It is my belief, the more people educated about cancer, the fewer adverse reactions.

In my experience over the last 18 yrs, ignoring the situation by family/friends, as some have stated, has been the exception, rather than the norm. I do not let my cancer become a focus of my conversations, but I do advise of my condition and results of chemo. Don't focus on the negative. They all know I may never be cured, but it can be controlled for many years and I can live a wonderful life.

Stay positive! A positive attitude will give you the courage to go on when things get rough. Most importantly, remember you're not alone.

People say I am an inspiration to them and their hero. I quickly let them know there are many, many of us out there living with cancer, living life to its fullest, and
fighting for a cure.

I involve myself with the Susan G. Komen Race for the Cure, the Breast Cancer Network of Strength, formerly Y-Me, (www.networkofstrength.org), the Mestatic Breast Cancer Network (www.mbcnetwork.org) and many others. Not only are these great organizations, participation in their program is uplifting and inspiring.

The thing that helped me get through this the most, though, is my faith. I have never prayed so hard in all my life. I put everything in God's hands, and asked Him to help me. I find comfort in the following Bible verses:

Isaiah 53:5, 'But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him ; and with his stripes we are healed.'

When in doubt, I recite Jeremiah 29:11, 'For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you a future and a hope.'

Never ask yourself, "Why me?" It's not only a waste of time and energy; it's a misconception. Look around you at those less fortunate. The world is full of victims--wonderful people who have had bad things happen to them, too. Be faithful, thankful, grateful, and keep and open mind. You never know what tomorrow will bring, and it just might be a cure.

It's O.K to be afraid. Watch your own body and mind, and react with your doctors if you don't feel something is right.

Don't be afraid to advocate for yourself--but don't worry. Worrying never changed anything.

Stay strong and stay positive!
JoAnn

"When a woman is faced with breast cancer and has to deal with the physical and emotional changes it brings, she must remember that no matter what those changes are, she is still beautiful inside and out, and that her heart, spirit, and faith will help her to fight and overcome the disease."
--Patti Labelle

mom2acat

I can relate to everything you said!

It feels like I'm walking a fine line between worrying and facing reality.

Ahaha

Having even one person who understands where you are truly helps. I'm fortunate to have such a husband, who is both able to be extremely positive, but who also knows what Stage IV cancer is about. Indeed, his first wife died of ovarian cancer at age 31 leaving him to parent a 3 year old child. I'm amazed that despite this death, he is able to be as positive and encouraging as he is, while at the same time truly recognizing and being able to talk about death.
My 89 year old aunt was also good. Age knows something. I was afraid to tell her, that she would be upset. Instead she said, so wisely, just do the things you like to do, keep busy, and enjoy each day. That's what I'm doing.
My best friend is more resistant to the idea that this might actually lead to an early demise. Every time I talk to my "X", he's saying he's hoping for a miracle. Nice of him to think that, but still not really in touch with where I am.

EWB

Beachbabe- Oh my goodness- I am in the same place! I have a wonderful family that has been really great but a lot of my friends have disappeared. Once I stopped working its like I fell of the face of the earth. Because I look ok all think I am in the clear. While I appreciate that conversations are not always about cancer, I wish they would at least make some attempt at remembering the answers to the questions they ask. I really don't mind "educating" about the situation but I'm at the don't ask unless you really want to know and sort of remember stage. If I am having a bad day I don't want people to give me that look or try to fix it; just be my friend. I don't want be responsible for making others feel better about what is happening to me.

Hope all are well today
Elaine

DragonflyDream

YES to all who have responded. I get so sad and angry at times because my loved ones just don't understand and refuse to let me talk about "it". I'd love to quote some of you ladies as it is my mission to stay posistive and help others!

~Aliceps-love the Patti Labelle quote!!!

I am refusing to accept the expiration date the docs want to give me and I am living on the best that I can, filled with hope and dreams. "Wish it. Dream it. Do it!" ~Alice Kitselman Rivera

mom2acat

I wish that people would realize that talking about it, and the possibility of death, is not the same as giving up. I get tired of people telling me I have to have a "positive outlook" when it comes to my cancer.

I try to keep my outlook on life positive, but it's not human, or realistic, to be that way 100% of the time. Sometimes just dealing day to day with the side effects of treatment, both long term and short term, make it hard to accept living with with cancer.

Beachbabe

That's it exactly! I think for the most part we are all very positive, but we are LIVING with cancer. Living with cancer bites the big one on good days...and we have a lot of bad days. While I'm glad I "look" healthy, I don't feel it and I just want the folks in my life to understand that. I want them to know that sometimes just getting out of bed and taking a shower is a monumental feat. So, when I say, "I'm having a bad day." the LAST thing I want is for somebody to tell me to think positively. I am thinking positively, but my body is full of cancer.

JoAnn06

I hope I didn't offend anyone with my verbose attempt at making someone feel good.

DragonflyDream, you may quote me anytime you like. I enjoy the Patti Labelle quote, also, as it is very appropriate for this site.

I felt like "you-know-what" this week when my white blood counts crashed to almost nothing; the constant fatigue is bothersome, but I manage to do things for myself and accomplish most tasks; some days I'm much more positive than others; there's nights I can't sleep wondering what's happening inside my body; and overcoming the endless number of crying jags and sleepless nights over the last 18 yrs, was quite an accomplishment when I eventually came to terms with my illness.

I am thankful for the progress in the medical profession and know there is more on the horizon. I have doubts it's still not enough to find that long-awaited cure. That's one of the reasons I'm an advocate for breast cancer research and awareness.

I do what works for me to stay as positive as possible in spite of the fact I am LIVING with cancer. I pass on what I feel is useful and if it helps one person feel better, for even a little while, I've achieved my goal.

No one has ever told me to "think positive". The joy I exhibit about life in general is a testimony to my goal of not letting cancer destroy my "living" and fun-loving attitude. Sometimes, it's difficult, but a sense of humor has made the dark days manageable and fun.

It's a lot better to laugh than to feel sorry for yourself.

The best thing about cancer? I am healthier, funnier, and nicer than I was before. I gave up drinking wine, spent more time with my grandchildren, traveled, and retired after 29.5 yrs in a very stressful job.

Do ANYTHING to get your mind off yourself.

It took years, but I really get it, now. Life is short--eat dessert first!
JoAnn

"I think it's important that we don't all have to hold our heads high all the time saying everything's fine."
--Nicole Kidman

mspeedy

I am so glad to be able to hear and share feeling about what it is really like to be living with stage 4 breast cancer. I have told my family and friends that there is no cure, but progress is being made in helping us control this disease. I wish there was as much attention paid to those of us with metastatic breast cancer as there is to those who have survived. We have and are surviving also! And after almost 10 years after my mastectomy, I thought I was cured too! Personally, I feel one is never "cured", this disease is just too darn sneaky!

Second_Dance

Geez, Beachbabe and the rest you have expressed what I have felt for these last 3 yrs. This desire to talk about the reality of stage IV breast cancer is what brought me to this website. I hoped someone felt like me, and I see you do. To be honest I am tired, after 3 yrs of dealing with daily pain & fatique it's just getting to be too darn hard to put on the "happy face" for everyone. I wish the people in my life would let express my worry without thinking I am "giving up" I think you expressed it well we may be able to tell people we are living with cancer but the rest is an "elephant in the room."

Ahaha

Beachbabe , I'm with you. I don't like people telling me to "think positively" when I'm not feeling well. Part of this reminds me of those who say if you pray for a healing it will happen and if it doesn't happen, you didn't believe strongly enough. Well, then, that means that if you don't get healed, it must be your fault. The same with, Oh, if you just think positive, you'll be o.k. Then if you get worse, it's your fault -- you didn't think positively strnongly enough.
I do agree thinking positive is a good idea. . . it's just that at times, especially painful times, it is difficult to do.
I think a good question is, "What can people say that is helpful to us." Maybe we could find a way to say what is helpful and what is not. People aren't trying to be hurtful; they want to say a good thing; they just don't know what to say. What have people said that helped you?
No one has asked me these questions, but I think I would appreciate as one sentence: How are you feeling: are you having any pain? Or, what kind of side effects is the chemo bringing? Or, DO you get anxious? What sorts of things concern you?
But most folks, just say, "How are you doing," and they clearly want to here, "Just fine, thanks." They they follow that, with "you sure look good."
Andrea

Beachbabe

My all time favorite is when people say, "How are you feeling?" and no matter what my answer is, they respond, "Well you LOOK good." Um, thanks, but did you understand we were talking about the fact that I have Stage 4 cancer? While I am still vain, I think it is a truly comical response.

What I want to hear from folks:
I am praying for you.
What can I do? (and then a suggestion or two, "Can I give the kids a ride?")
Would you like to talk about it?
You must be getting worried about your upcoming tests.
I read in the paper/online _________ about breast cancer. How do you feel about that?
In the event your fight ends, how can I help your family?
Cancer is expensive and your loss of income must be felt at home, here's a gift certficate.
Can I give you a hug? (I want them to ask as my bones are screaming and an aggressive hug hurts like heck).

I'm sure we can all come up with a bunch of them. Perhaps that's what we should do, develop a "hand out" of sorts to give to all we encounter to teach them the best way in which to deal with us.

Peace and love~

EHM

Hey Beachbabe... great list of suggestions of what people can say. I also appreciate -
you are in my prayers
I hope you have an easy time of this new treatment
and....
I wish I knew what to say .

I mostly find that people really don't want to know how I am.. they are afraid of what I may say. They want to hear that everything is going to be ok.

And then there are those who say that they have an aunt with bc and she had chemo and is just fine now... and they haven't a clue. It seeems that it is up to us to educate people to the realities of mbc - many of us are living longer with a decent quality of life.. and many of us continue to die too soon at too young an age... with a crappy quality of life.

blessedMomof2

I too can totally relate to the pressure of feeling like I need to "stay positive" all the time for family and especially friends. I have such amazing support and love from my family and friends but I find that people totally hang on each and every scan, bloodtest, etc.. After the past 9 months it started to make me totally crazy living test to test so I am giving up the craziness! I no longer want to know unless I need to know! I am telling my family and friends that I choose to live in some denial and give the stress to my team of doctors. I am asking friends and family to respect my "denial" at this time as I am focusing on living and having as much of a stress-free life as I can. I have felt a tremendous weight lifted off myself by not focusing on each and every result and just letting go of the stress until they give me a reason to worry. I am not saying that I don't ever want to know, when I get scanned I of course will find out the results then.

The other thing that drives me crazy is having to be positive for other people. There are certain people who you can tell your fears to but others just can't handle any negative feelings. I need to be able to express myself. I spend enough time being positive for my children but adults should be able to handle the realities of the disease without me having to tell them a fairytale too.
It is so great to have you all to vent to about these issues. I appreciate having a place I can come and be really who I am. I am still learning a great deal how to cope with my illness but not feeling alone and isolated helps a great deal.
Stay strong!

darn

This is exactly what I have been trying to make some sense out of. I was dx in 2005 and mets in 2008. I feel like I have a double life. Everyone tells me I look like the picture of health. There is no outward signs of disease.
The inside tells a totally different story. I wake up with pain every day.
I believe, as beachbabe said that we need to educate people on what we want to hear. There is so much education that needs to be done on metastatic cancer.
There is also a huge part of me that feels like blessedmomof2. Other than the fact I am a Mom of a 3 year old and 7 year old who keep me so busy. I feel just like her to live in some sort of denial as to distance myself from always thinking about it etc..
I am so glad to have this place to come to and communicate with so many others who face this same burden.
I can say firsthand as a nurse myself, I learned so much about breast cancer and living with metastatic cancer by being on the other side as a patient. I have not gone back to work since my little one was born, but plan to go back next year when she starts school. I have been praying about this and feel like I am being called to work in Hospice. I believe it will become a ministery for me. I also think if we can find some purpose for what we each have to carry, it will help us live more fully.
I really like this verse from St Paul to the Phillipians:
In HIM who is the source of my strength, I have strength for everything.
Stay Strong and have Faith,
Diane

CSF

WOW...
big topic.
Yup, I feel the same as all of you. Leading a double-life. I still struggle with it after almost 5 years.
I have learned that most people just can't or won't deal with the reality of this chronic cancer, and it's not usually because they don't want to. They just aren't able to for one reason or another.
Looking good sucks sometimes, doesn't it? And NOBODY gets that unless they're in the same boat. It's very very frustrating. My own family expects me to be superman. My brother-in-law suggested that I repave my driveway - BY MYSELF with 3 broken vertebrae and dozens of bone mets. It never occurred to him that there is no way on God's green earth I could do that. So my family won't help me with anything. Cuz I look ok to them.
Man, isn't it nice when we can come here and everybody knows exactly what this is like? Here's a funny thing I thought about doing: carrying a wallet size copy of my bone scans so that people could actually SEE that what's on the outside isn't always representative of what's on the inside! I'd show it to the next person who slams a door on me, or expects me to run a 5k for breast cancer!
I sortof stopped trying to get it through people's heads that I'm still sick and still dealing with all of the crap that metastatic cancer throws at us. If someone wants to learn, I'm more than happy to talk to them. Other than that, I just smile and nod "yep - I'm doing great!". When it all gets to be so crazy-making that I feel like screaming, I come to a site like this where I don't need to explain anything.
Thanks ladies for being here.
:)

Beachbabe

Laughing out loud this morning thinking about you paving your driveway and showing your wallet sized bone scans to the 5K folks!!!!! You know, I think Stage 4 metastasized breast cancer enhances women's senses of humor. I've had some of the best belly laughs with other Stage 4 gals. I went out with my support group last year and we ended up initiating a "best butt in the bar" contest, lining men up along the bar. Perhaps cancer just gives you more nerve? Keep laughing, it makes the cancer cells wonder what we're up to...

pattikaye

Elaine-You're right on the money. Everything you said is exactly true. Some friends stay for awhile but then they soon disappear. Thank you for your post-it made me feel more normal. Patti

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