The Downside of Virtual Interaction

Since my breast cancer diagnosis and–48 hours later–the creation of this blog, I have sung the praises of social media.  As my readership grew and my Twitter numbers blossomed, virtual roots that were planted started to flourish in a garden of unending support.

There are hundreds of organizations and affiliates that provide some level of support.   For me, in the very first weeks of this experience I learned very useful information from Beyond the Shock and the (rather quiet) discussion board of the National Breast Cancer Foundation.  Not only was it valuable to me in learning about the disease writ large, but also in reaching out to people I never knew for help.  I remember my first question: “Do I ever wrap my head around this?”  It also piqued my interest in this whole pink movement when someone signed their good wishes “Your sister in pink.”  Warm intentions aside, I realized there was a pink movement and it could be, well, a little misguided.

The cool thing about social media is that you have people of all stripes that unite around a common cause.  I am connected to, and with, advocates, patients, providers, and caregivers who all became conduits of knowledge, support, and empathy.  But like anything else, you need to have the ability to absorb the best and filter out the bullshit.  And bullshit is what I came across not twenty-four hours ago as the result of a question posed to the public on NBCF’s Q&A discussion board.  These questions are tweeted out via @breastcancerQA and occasionally one piques my interest enough to click and see what’s going on.  While sipping my tea and browsing through my Twitter feed the other night I saw this:

Capture

I immediately felt a pang of identity for I reflected back to the times my father refused to support my mother when she had problems at her job.  She believed that she was facing age discrimination and  he patently didn’t want to hear it and told her to suck it up.  (I had a few words to say about that at the time, but I digress.)  Point is, I needed to click on that and see what was going on.  This was an emotionally abused woman crying out for help.  I didn’t know what I could add to that conversation, but I made the mistake of going in.

My faith and hope in womankind was dashed when I read one of the first responses.

Capture“It might be harder for him than you.”

I want you to ponder that answer to a woman who has identified herself as one with stage iv disease.  Roll them around in your head.  Digest them.  And now read it again.

It might be harder for him than you.”

We talk about physicians who are dismissive, but rarely do we delve into the sad fact that partners and other women WITH BREAST CANCER can be foolishly dismissive in their words and actions.  First of all, said husband is an asshole.  He was probably an asshole before his wife got cancer.  And he’s an asshole now.  There’s probably little that can be done for a situation like this and, obviously, we  know nothing when all is said and done.  But honestly, why should a woman have to deal with that while they’re either vacationing in or moving permanently to Cancertown?

I think far too many women suffer in this space of emotional deprivation and we know all too little about it.  It’s not like there are shelters for women who have breast cancer and aren’t being supported in the way they need to be.   Many women have no access to the web in order to gain support.  Many of them may know nothing about blogs or Twitter.  They don’t have access to or cannot find a support group.  They are essentially alone–not unlike women years ago when breast cancer was a “condition” of which you did not speak and men complained that their wives were less than the woman they married.  The NBCF discussion boards are notorious (in my view) for the “my prayers are with you” crowd, so there wasn’t much to offer in the way of advice aside from “you need to talk to him” or “seek counseling” or “I’m praying for you”  or “men are like this.”  (I’m afraid my answer wasn’t helpful, incensed as I was by the words of Ms. X.)  But that this woman reached out is enough to break my heart.

One woman commented with a central truth.

Capture

What can we do, really?  My hope is that in reaching out this woman who is faced with such cold uncertainty and lives with a dismissive partner’s “tough love” will find the same valuable and indispensable virtual support that so many of us have found.  Thing is, it won’t erase or even take the place of someone so central to your life who is not supportive.  But perhaps it may provide some degree of help and solace.

According to the identifying information posted along with Ms. X’s vacuous advice, was information identifying her as having stage iiic cancer.  My reply was more “I-can’t-believe-you-just-said-that” disbelief.

Ms. X’s egregious comment both dismissed the emotionally abusive behavior that was/is affecting this woman in a profound way by chalking it up to the ol’ patriarchal “that’s how most guys handle things,” but what is most egregious is how she’s marginalized the gravity of this woman’s diagnosis.  Was it intentional?  I doubt it.  Cripes, she has stage iiic breast cancer herself.  Look, what Ms. X and many more of us don’t often acknowledge is that it is empathy that you feel for your family, friends, and colleagues when you think they are having a harder time with your breast cancer than you.   They are NOT having a harder time than you are.  Let me clean off your glasses so you can see clearly: YOU are the one who experiences any one or more of these realities as the result of a diagnosis of breast cancer:

  • One or both breasts amputated
  • Lymph nodes removed and the associated pain and lymphedema
  • Reconstructed breasts you can’t feel anymore
  • Feelings of inadequacy, sexual disengagement
  • Chemotherapy and its associated side effects
  • The loss, in some cases, of employment because of the disease OR
  • The difficulty in finding work after your treatment
  • Experience of (in some cases) multiple surgeries
  • Depression, anxiety, confusion, stress
  • Long lasting side effects from the chemical warfare you were forced to endure: neuropathies, cognitive dysfunctions
  • A period of mourning after treatment that can result in further depression and anxiety
  • Guilt.  Many women feel guilt that they didn’t catch it sooner, guilt they will leave their families long before they planned
  • Fear of recurrence
  • The unsettling unknown of that stage iv landscape
  • Death

This is your reality and no one else can ever really be in your shoes.  How many more women still have to see to their own needs, those of their kids, spouse, clean, make meals, and otherwise set the agenda for the household in addition to their breast cancer experience?  This is not to say there are not supportive spouses out there–far from it–but this misguided response that someone else has it harder than you is yet one more example of women minimizing their experiences.  Whether it be a successful career or a devastating disease, women always minimize their experiences.  We’re not pretty enough, not fit enough, not successful enough, not strong enough, not . . . well, you get the idea.

Your disease sets off a number of emotions in the people around you: fear, concern, and sympathy to name but three.  The people who love and befriend you face their own mortality when they see you.  But they also love you and empathize with you.  They want you to be well.  They are saddened to see you assaulted with cancer.  They may be devastated that they will not grow old with you.  But they don’t have it harder than you do.

If you have breast cancer, NO ONE HAS IT HARDER THAN YOU.

NO ONE.

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60 Responses to The Downside of Virtual Interaction

  1. Wow! Thank you so much for posting this! In reality, there are a lot of breast cancer patients screaming out about this! It is quite shocking but really a relief to see this blog addressing it! Thank you for being so courageous!

  2. AnneMarie says:

    Anonymous… I’m glad you shared here… and obviously, you are in a safe space even though this is a public blog. Scorchy has made sure you are anonymous. Just know, you are not alone. We have you surrounded with love and support…

    xoxox
    AnneMarie

    • Anonymous says:

      Dear Anne-Marie,

      Thank you so much for your support and kind words. I know I am safe here, I just wanted to make certain, I have never posted here before, and I was quite harsh in.my effort to honestly share an accurate picture of what I am going through.

      I think this is an important topic to explore, I know I am not the only one who has eperienced something as cruel as this, and I hope my sharing helps another to open their heart too. I hope something positive comes from it, but I must say it has already lifted a heavy weight from.my shoulders — just getting it out has helped me tremendiusly and the responses have been beautiful examples of what you are all made of, and I thank each and every one of you for offering your hand and heart to me. It’s very important!
      If I could say one thing I know for sure now, I am not alone, and I am so grateful to have stumbled here when I did. This was no accident, I do not believe in them, this was a gift.

      My best to everyone, along with my sincere thanks.

  3. Anonymous says:

    Dear Scortchy,

    Your support and words are more meaningful than I have words to express the relief I felt when you first responded. . I sincerely appreciate your conscientious thought of keeping this anonymous, for now, I just don’t feel comfortable yet spreading this across the virtual world. You never know who may be watching, and I am.in.enough danger as it is, so that was a great call on your part.

    I am sending you a huge hug, not for what you said, but who you are and for making this site available for those, like me, who need your honesty and open heart. I have followed you for some time, read responses from you on other blog sites, and frankly, you engender much trust in this horrifying world of BC daily survival.

    Thank you, and please keep.me posted. I need help, but mainly an understanding group I can lay my cards on the table with, and fear no.judgement. When I wrote earlier this morning, it felt so good to finally purge, and it was amazing to me that this subject was on the table at the perfect moment…….

    Thanks to all of you for your patience and understanding. I need you all, and have no where else to turn. It is important to me to be honest, and to gain your trust as much as you have gained mine.

  4. The Accidental Amazon says:

    I’ve watched a few friends go through this kind of shit after they were diagnosed with breast cancer. Unfortunately, you do really find out what people are made of when the chips are down for you. One friend ended up divorcing. Another stayed because she felt she couldn’t afford to get out — sadly, a real concern for a woman who can’t work any longer and has been relying on her husband’s insurance.

    I hope every woman in a situation like this can figure out a way to reach out to someone who really gives a shit and can step up to the plate to help them get away from it. Putting up with this sort of abuse causes damage that reverberates forever. I’ve seen it, and to a smaller degree, I’ve lived it. Abusive asshats don’t change. Wish I had a magic wand…

    • Anonymous says:

      Yes, it can, and does ceate a situatiion of irreversable damage and quite frankly, I think I may not ever trust the same way again. I lost every friend, some extremely close friends, and I was devastated. I questioned one at a leter time and she said she couldn’t bear to see me treated this way. Well,i I thought, if you cant bear it think of how I feel ! This girl waa not only a nurse, but my very best friend. My deepest secrets had always been held in confidence, just as I held hers. My feeling is — if it hurts to see it – PLEASE HELP ME RESOLVE IT !!

      Thank you again for your support and understanding, It is important that I have not already been shut out here, and that tells me I must have been fortunate enough to be reading at the time I was,and perhaps this is a good beginning to heal, as much as I am able. I am not shy, nor am I ever at a loss for words, but this is a different situatiin — and I am usually on the giving end, but this time I really must learn that it is alright to take when I need help. I am so grateful. It is about time this lesson is learned.

      With sincere thanks —-

  5. Anonymous says:

    IF YOU WISH TO BE IN TOUCH WITH Anonymous CONTACT ME AND I WILL FORWARD YOUR MESSAGE.
    ______________________________________________________

    Oh, how this cut through me !! I live with an asshole too, who not only wallows in self-pity, giving me little to no support, but also insists I do all the house cleaning, including toilets, floors, all the dusting and any other blemish the house may suffer at any given time. He refuses to allow me to “hire” someone to come in and clean, he feels his space is invaded if that happens. He has run off all my friends, they cannot stand to see me treated this way, so.they just abandoned me. It has been a nightmare since the day of diagnosis. ,

    I also was diagnosed on Valentine’s Day, 2006. WOW, you would have thought he would spend a few bucks and get me a rose, not for the sake of sympathy, but to say “I love you, and I am so sorry you have cancer” but NO, this was like every other year, he does not believe in holidays or gifts being given him, but that does not mean I share his selfish refusal to accept any gift I offer him, it hurts when he insists I return a gift I choose for him without opening the package. Nor does it mean I do not appreciate a little something at Christmas to say “I love you”, and it infuriates me when the holiday is ignored completely. I have never had the opportunity to say these things to anyone,so.please bear with me as I vent, these things need to be brought to the open. He is a very unhappy man and when I.have shared these things with others I have been told that these are signs that he needs love. Well SO DO I, and I need it now more so now than ever. I have quit worrying about his needs, he has assassinated my self worth before cancer has a chance to kill me. I have no desire for sex, and for a long time I blamed it on the lack of estrogen my body craves, but truth be told, I no longer have any desire to share my body with him. Let him whine, let him bitch, but it takes two, and I am tired of giving and never receiving. I am not a cold fish, and do.have a desperate desire for closeness, but not if it is demanded of me. That feels like rape to.me now, if anyone understands this feeling.

    I have one thing to say to any woman who may be suffering what I am enduring, get out !! I wish I could, but I am nit in a position to just leave now, unless I were to go to a nursing facility. This seems strangely comfortable now, at least I might be able to have an intelligent conversation with another human being. I know this may be difficult to believe that I have not escaped yet, but I have tried on many occasions, but have been stopped by him, due to his intervention with doctors who do not believe a man “as nice as he is” is so difficult to live with.

    I really feel my heart conflicted when I question my desire to fight this disease with everything I have, but I also wonder if the effort is really worth it. This is a sad, sad epitaph, and I wish I were making it up, or at least embellishing, but I am not. Please, if you see yourself in this — run, don’t walk out the door at your earliest opportunity.

    I need help, I know.. I must be ready to leave the home the minute an agency is called in to assist. I find this daunting, too. I am so tired, and the thought of the fight is even more exhausting. I have no idea,where to turn at this point — any and all suggestions would be more than appreciated. I still have the desire to fight this, I just don’t know how. The last thing I need is platitudes, I need to regain my will.

    • Scorchy says:

      I have no counsel, no words, no real means to help and I certainly wish I did. I also have no judgements. Far too many women are in this situation and it breaks my heart that you are among them. Relationships are complicated. It’s always easy to say LEAVE, but often far too difficult in reality to actually do.

      I think, however, that you will be surrounded with virtual support as a result of this comment. And that may certainly help to sustain you or could be a conduit to finding you the hand you need to lift you out of this muck.

    • dglassme says:

      I’m sending you this great BIG virtual HUG from California, stop for a moment so you can really feel me squeeze you tight. Like Scorchy I have no advice but, I watched what you write for years, and hated it. So I know this situation all too well. I hope for your sack you’ll find some sort of reprieve. Diane

      • Anonymous says:

        Dear dglassme, Thank you for your comment, and I am wondering about what you said at the end “I have watched you for years”. Do we know each other? It is not my wish to remain anonymous, but for now, for my own protection, I think it is best. Thank you the big hug, it is appreciated much more than I can say.

      • dglassme says:

        Oh sorry, no we do not know each other…it should have read, “I watched what you write about for years”, my parents were like this. I’m not a stalker, I only stalk Scorchy so I don’t miss anything funny she says.

        We share a common bond which is why you’re able to really feel my virtual hug as long as you close your eyes to feel the squeeze. Oh, and I give real tight hugs 😉

      • Anonymous says:

        Dear dglassme,

        I am so glad you cleared that up for me. I had been wracking my brain trying to remember if I knew you from another group. I will accept that great big hug, and tell you how grateful I am for your sweet thoughts. It really does helo, even vurtually, when you have needed a hug for so ling yiu thiught you would never get another.

    • Reading this grieves me. I was married to an ass during breast cancer, but a different kind of ass. He actually liked cooking and being a caregiver, but I discovered he was a chronic liar. Your situation is different than mine, but the effect is the same. It feels like a betrayal and therefore a deal breaker. Being ill at the time puts you in a place of dependence and “stuckness.” All you can do is take care of yourself as best you can until you’re physically strong enough to break free. So much I could write about this, but this is a comment space. I was going to avoid this topic in my blog, but I can see from here and other online spots that it’s a topic I need to address, and I’m ready to do so. The short answer is to lower your expectations of your husband, otherwise he will always disappoint, and to build your own resources, including those within. More on this much-needed topic to come…

      • Anonymous says:

        I thank you, and look forward to you opening this topic on your blog – I have been there many times – but I have never posted. You must think it is very tough for me to keep all my thoughts to myself but I do visit and stay silent from time to time. But, this topic brought out all my anger and FEAR, and I could not hold my tongue any longer.

        I think there are many women out there who feel similar to me and what I am going through and I think it is time to bring everything out of the closet and lay our cards on the table, if for no other reason but to give others the strength to speak up too. It took everything I had to write my true feelings on a site I have never spoken on before, but I am so glad something pushed me into getting honest. This is,an imoortant topic, and requires some exposure. I fear there may be some out in the gallery who are in despeate need of help, just like I do, and the only way to resolve it is to talk, talk, talk.

        I have so many fears, and so many responsibilities to myself to get into action, but at this point I am paralyzed. Maybe this is the beginning of opening up the flood gates for me, and I am.grateful for all the support I have received in just a few short hours.

  6. dglassme says:

    Hi Scortch, Thank You!

    The title doesn’t really capture what this blog meant for me but, you did it. You said what I’ve been trying to say for nine months since Mom’s death and my diagnoses. My mom went through this awkward abuse with nowhere to get answers. No internet, no real friends, just a loving family who really didn’t understand. It’s bothered me for years watching it. My parents celebrated their 50th anniversary a year ago, I could never understand how Mom was able to stay with my father so many years under this awful treatment, not physical, verbal. My mother must have been so very lonely inside. And it makes me MAD as hell I never got it, not until I was diagnosed. I knew his behavior was wrong but, never realized it’s true devastation.

    Once again my dear you have managed to harness and direct shattered pieces. Thank you for squeezing in more of your treasured writing, I know your time is more limited now that you’ve returned to work. Yes, I’m pumping sunshine up you’re a$$ to encourage you to write more in the future. Dd

    • Scorchy says:

      And here I thought it was just gas. Now I feel violated.

      You know you must forgive yourself–or try to. We don’t usually “get it” until we’ve put on the moccasins and walked in the same path. Illness just exacerbates what was always there. Words mean something. You keep calling someone stupid over and over and over or dismissing their illness as something that got in your way? What’s the difference between that and a punch in the face?

      Despicable.

  7. Katie says:

    This is absolutely mind-boggling. But I will say, just to play devil’s advocate, I can’t imagine the awful feeling of helplessness to find out one of your loved ones has cancer. That doesn’t give anyone an excuse for assholeish “tough love,” and it definitely doesn’t make it harder for that person, but I’m thinking that’s what might have been meant by that statement. I know for me, I would rather have cancer myself than be forced to be a spectator. Is that insane? Probably. But at least I’d be in control of that situation. As the other person you can be supportive and all that jazz, but at the end of the day you can’t DO anything, really. That’s sickening to me. I’d rather be in control of my own life, even if it’s ending, rather than watch someone deteriorate right before my eyes.

    • Scorchy says:

      That is a good point, Katie. At the end of the day there are varying degrees of control, pain, and torture associated with this disease. Both on the self and the others around you. And maybe when you drill deep down into it, that is what Ms. X meant by her statement. That being said, it was misguided comment in the way that it was thrown out there–particularly from one woman with breast cancer to another.

  8. p.s. I stopped frequenting the online forum for stage IV where I originally found a great deal of support because, as the crowd changed, as it does when people tend to die, the new crowd seemed to be too much of the “have faith, have a positive attitude, I’ll pray for you” fluffy pink crap crowd. WTH? No one said they could bring all that pink with them.

  9. Agreed, Scorchy…it may be hard on them, but MY cancer is not harder on anyone than it is on me.

    I have a dear friend whose (now ex) husband actually told her that she ruined his plans by developing stage IV breast cancer. Ruined HIS plans. What a jerk.

    And like mainelyhopeful said above, once places and people jump on the partner-support bandwagon, it becomes all about men, again.

    In the beginning I felt glad that I didn’t have a huband/partner who would have to watch me die, but lately I find myself feeling envious and even resentful at times when I hear people toot the horns of supporting spouses who ARE supporting and wonderful. I face this thing alone when it comes down to it. People around me say they are “there for me” but will they be there when I am in so much pain that I need help to get to the bathroom, or there to hold my hand as I die? I hope to outlive my mother, as well, to whom all the logistical support has fallen, but I don’t hope she dies anytime in the next 10 years, and I doubt I’ll make it 10. I also have a son who will have to lose a parent long before he should have to, though he is 21. I hope to get him through college and into his own life.

    It sucks to feel trivialized and it sucks to feel forgotten and gotten over. It sucks to feel alone in this, too. It sucks when those around us act like things are so horrible on their end when we are the ones with the incurable and terminal disease. Okay, it’s killing me slowly, but it’s still killing me. Like slow torture.

    Now I’m rambling and should probably go write a blog post!

    [Heart] you, Scorchy! Thanks for writing how you write, and sharing what you share. -shelli

    • Scorchy says:

      Ruined *his* plans? What a douche bag. Illness brings out the best and the worst in people. You know who your friends are and who they aren’t. And you make new–sometimes unlikely–friends.

      Being single and having to face this alone (that is, without a partner) is actually pretty darned liberating. I make my decisions, I don’t feel compelled to wonder if my partner is okay and, thus, take time away from my healing or other activity. But, sure, you wish you could lean on someone else at times. This disease is so effing complicated: financial, social, cultural. So many levels of difficulty, so many challenges.

      Cancer sucks!

  10. hermyleen says:

    Scorchy I need to add this to my list of pet peeves because this comes up all the time and I just brush it off or just agree with them. Some people just have no idea. Love your post.

  11. Scott MacKenzie says:

    I am speechless, except to say “excellent placement of the face-palm statue on your blog page.” There are no excuses – just the reality that there are assholes everywhere. But we already knew that.

  12. Acacia says:

    I’ve always had a problem with the tendency for people to invalidate the feelings of those who are sad or ill by painting them as selfish or melodramatic. I once worked for a psychic line to pay for college after my mother died from lung cancer. All these people would call and ask me what seemed to be the stupidest questions; is their (1st, 2nd, 3rd) boyfriend coming back? What are my lottery numbers? Things that in the wake of my mom’s ugly death meant nothing.

    I realized that I was belittling their fears, pain and worries (not when I was speaking to them) when other people had it so much worse. I also realized that I was being an asshole. I was finally able to hear the pain in their voices and knew that whatever my opinion, their pain was real to them, and that was all that mattered.

    Scorchy, as always you have inspired me! xoxo Acacia

  13. nancyspoint says:

    Quite the discussion here. You know, Scorchy, this is something I’ve thought quite a bit about from time to time. As you might know, my mother died from mbc and I was diagnosed quite soon after that. I know it would have been really tough for her to watch me go through this crap, especially after she herself went through it. Would it have been worse for her than me? Yes and no. Also, my hubby has been deeply affected by my experience. But, of course, it’s still MY experience, not his. And I love the way you called the mastectomy an amputation. I completely agree on that count. Your list is right on. And as for that online support, well some of it is wonderful and some of it is completely worthless. Like you said, a person has to filter through the BS. Great post as usual. And thanks so much for the link.

    • Scorchy says:

      I suppose writing from my point of view of someone with MBC, I lean toward the “don’t tell me it’s harder for you” side. But in the end it’s certainly not a competition of who has it worse. Unfortunately, you have seen it from both sides of the coin. And that just makes me sad. xoxoxoxo

  14. Whew, another powerful post Scorchy. I hope that lady was able to take what she needed from that forum post, and reacted with as much disbelief & ‘WTF’ as you (and me) when she read that ridiculous comment.

    You touched on an interesting point about seeking support online. It builds important relationships & brings new ideas/awareness – but can it ever take the place of those most immediate to us? Can it fix the people who aren’t supportive? I reckon not. However, I guess social support can be like a sounding board, and we might build up courage one step at a time. It took so much guts for her to write such an honest & vulnerable post on that forum. I hope, hope, hope, it is a step toward being honest with herself, and with her husband, or with anyone else in a position to support her.

    It ‘grrrr’s me up to read about such poor caregivers. I know it’s a stressful position, not easy at all, but like you say – no one is having a harder time than the one receiving care.

    Ok, I’ll stop all this writing now 🙂 ~Catherine

    • Scorchy says:

      I agree. Certainly my virtual support doesn’t take the place of close friends and family who are there for me. If I had it to rely on exclusively then I don’t know how I would think about it. Gosh, I wonder if you can really rely on it exclusively.

  15. Victoria says:

    “It might be harder for him than you.”

    Yep, I’ve heard this one more than once when I tried to share my feelings about the support I’m getting. OK, I know this is tough on my family but I looked at your list and, lucky me, I got to put a check mark next to each one – the Full Meal Deal so to speak. I’m also sitting here 2 weeks from my next check up and I’m pretty sure it’s back – don’t ask me how I know but been here before and it feels the same. So any comment I get that discounts my feeling and fears is going to be met with the contempt it deserves.

    As for the support issue all that came to a head a few weeks ago. I exploded, broke a couple of plates (wedding china) and explained exactly what the problem was from my point of view and told him in no uncertain terms what I expected from here on out. And then I cried a lot. Things are much better now and they better continue to improve or the next time I will break the plates on his head and not on the kitchen sink.

    • Scorchy says:

      Good for you Victoria! And, in some sense, our caregivers do need to know what to do for us. And if they’re clueless then they need it communicated to them–by any means necessary. Here;s hoping it won’t need stitches if it happens again. 🙂

  16. Excellent post, Scorchy! I love what the one woman wrote about the definition of “tough love.” It certainly does not even begin to apply in this case. The only thing I’d add is it’s apparent to me that the husband of this woman, in all his purported “strength,” is incredibly weak. So weak that he cannot deal with his own emotions towards his wife’s Stage 4 b.c., so he projects his crap on to her because he can’t handle reality. This is NOT to excuse his behavior. He is still a complete asshole. He has zero insight into his own behavior because, again, he’s weak and afraid. Being afraid under these circumstances is understandable, but no empathy for the way in which he’s handling it. What a pathetic man and what a sad dynamic in their marriage.

  17. Lori says:

    Holy wow! I am fascinated that I still find shock in these situations; they are far too common. I remember the fury I used to feel when hear about husbands who left their wives rather than face cancer with them. That was until I discovered how many women are likely better off without these men in their lives. Now I’m just remarkably sad about it.

    However, I have to disagree with one point. My cancer journey, like everyone’s, has its ups and downs. Sometimes undulating hills, other times a rollercoaster ride. But in those moments when I am not sick from chemo or experiencing pain, or feeling the stress (and for me, despite being Stage IV, that is most of the time), I am very much in tune with how devastating this is for my loved ones, and I have often said that some of this journey is harder for them. They remain impotent when I can be proactive; with just as much knowledge, I make the decisions and they must support them; and in the end, chances are they will have to live with out me and I will never have to experience that kind of loss.

    I don’t believe I’m underplaying my hand when I feel this way, or in anyway minimizing my experience but rather acknowledging that there is ebb and flow for everyone involved, and how challenging it is to he on the sidelines.

    Just another perspective…

    Xoxox,
    Lori

    • Scorchy says:

      Yours is a valid perspective–there certainly is room for many points of view here. I have thought that as I see my mother deal with this–my goal is to stay alive until after mom dies for I would hate to see her go through that hell. But as I move through this experience it is my life, my goals, my quality of life, my finances, my decisions, my consequences. It will always be harder for me. xoxo

      • Lori says:

        With that I agree completely – I feel very much the same on behalf of my son, my mother and my husband (don’t tell them the order, please!).

        Love ya!
        Lori

      • Scorchy says:

        Secret’s safe with me. Love you too, kiddo. Can’t wait to see you in a couple of weeks! xoxoxo

  18. gregsmithmd says:

    So good, as always.
    Keep up the reality checks.
    They’re needed.

  19. Great post, as usual, Scorchy, and her counterparts have been in support groups with me so I recognize the pain.
    In my post on the topic, I approach it from an Appreciative Inquiry angle: let’s inquire into what great support is like. And, what can I do, everyday, to get the quality of relationship I want that will see me through this medical crap? I figure if I go the Appreciative Inquiry route, I’ll come out of it stronger and better equipped to help those who you’ve mentioned. http://conflictcompetence.wordpress.com/2012/12/15/breastless-love-the-man-who-stayed-with-the-sick-woman/

    • Scorchy says:

      [Head thunk!] Yes, I recall how much I loved this post when I first read it (and I hit the like button too). Let me link to this as well. Thank you for your kind words and for jogging my memory!! xoxoxo

  20. Scorchy ~ I love you! This is a great post and one that I hope will go viral! I HEARTily agree with you ~ keep speaking, keep inspiring and know that you connect with so many of us ~ your truth speaks volumes and your courage inspires us all! I am so proud to be your friend! xo

  21. Jan Baird says:

    What you say is so true. I had an emotionally abusive husband but fortunately got away from him and his caustic comments a year before being diagnosed with stage IV bc. I am better off now without a partner than with one who would be unsupportive and care only about himself. Thanks for voicing these important points.

    • Scorchy says:

      Good for you, Jan. One thing I didn’t mention was women who are victims of physical abuse or those who are abused by being under the thumb of men who control the activities of their partner (I use partner loosely, naturally). I can totally see a man telling a woman what she needs and when. Boy, those situations are heartbreaking on a good day. Add cancer and it becomes an uber tragedy.

      My mom left my dad, too. Courageous women!

  22. When were at an appointment to set up my radiation schedule the man who works as the liaison between the cancer center and the ACS asked to have a word with my husband and I. He proceeded to tell me all that was available to me in the way of support. That took about 2 minutes. He spent the remainder of our time asking my husband how HE was doing and letting me know that this is really hard on husbands. Needless to say I never took him up on his offers of support. I get that being a caregiver is hard. Been there done that but this was the one time in 30 years that it was about me. Not my kids, not my parents or my husband. Unless any of the aforementioned wanted to jump in and take a few rounds of chemo or radiation for me…

  23. Maria Malta says:

    I read your blog but have never commented before…just wanted to say that your comments are spot on as usual.

  24. chrisrenee says:

    AMEN scorchy! your list at the end was dead on! Many women whom I have spoke with since my diagnosis, make comments of “how hard this must be on your family, or at least you get new boobs”. really? I was pretty fucking content with my real ones. Maybe a reduction…. Some people can be such twats!

  25. Interesting that you say “breasts amputated” rather than mastectomy. I’d like to know why you chose those words. I know why I like it.

    • Scorchy says:

      CC, I’m actually working on a post about this and once I get writing I won’t stop. So I’ll answer you privately. Cripes, if I start now I’ll write the whole blog post in the comments!!

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