Everyone I meet always wants to know how my husband is, how is the treatment going, and lastly when all other questions have been asked and answered, the standard, "And how are you?" My stock answer is always the same - I'm okay. Because realistically people don't really want to know how I am. They need for me to be okay because no one else wants this responsibility. They need to know I am standing strong because they hope that will mean they can stand strong should, God forbid, anything like this would happen to them. But I often wonder, what would people say if I actually told them how I am? Even on these boards or in support groups, you really can never unload. Especially on these boards or in support groups, because everyone else here is feeling just as heartbroken, just as defeated, as you are. When you even touch on the depths of despair that you are constantly swirling in, the stock responses come pouring in, "I know just how you feel. . ." "God never gives you more than you can handle. . ." or "What you really should do is. . . " So I guess the lesson here is (of course, there would have to be a lesson in all this agony), that I will acknowledge for you, and for myself, that the world will revolve, the sun will rise, and you will perserve because there is no other option. But you are not okay. Something in your life has been lost, and shattered, and changed forever, and no matter what the outcome, it will never, ever, be okay.
I appreciate your comment so much!! I have not been able to put into words or to communicate my thoughts intelligently so that others can understand.
I am going to copy your post and paste it into my notes to file.
Thanks Again, Helps to know I am not crazy!!
I think finding the balance between 'glossing over' and 'telling all' is a challenge, and it depends on how close the relationship is. I think saying OK without qualification isn't helpful and does a disservice to all the fears, worries etc that one keeps bundled up inside. Better to at least indicate 'it's hard at times but getting through it' which avoids denial both sides of the conversation.
But you obviously tapped into a chord of emotion. And I particularly liked the way you emphasize the importance of acknowledgement and recognition - your last para is wonderful.
This is just my own opinion, obviously. But from my experience from these past several years, I will say that for me, telling someone how I am really feeling burdens them in a way that is unfair, and unkind. Everyone asks this question out of courtesy, and caring, not because they can really bear to know. The people who really care about us, know in their hearts, we are not good, we are not okay. We are burdened, and devastated beyond recognition or belief. So for me, "I'm okay" remains my response.
I am new to this forum and new to the experience of cancer altogether. Your post expresses exactly how I feel. My husband was just diagnosed with NHL at age 46 three weeks ago. After a few days of letting the news sink in, we shared it with friends and family. And now, no one says a word to either of us. Is it that they are afraid?? Don't know what to say?? Pretending it's not true?? And I can't share my fears with my husband because I'm supposed to be the strong one, the one that's always positive to keep his stress down. Now I can't share with my friends or family either. It's a lonely feeling. You probably feel the same way having to respond with "I'm fine, I'm okay" when asked...
Thank you so much for putting your thoughts here for us to share...It's nice to know others feel the same, not so lonely anymore...
I miss my life. I don’t notice it normally. It’s just every once in awhile it pierces me to the heart. I miss dinner with friends, shopping days with my daughters. Having the whole day to spend with my granddaughter. I miss being a wife. I miss him. I miss walks in the evening, reading in the afternoon, and being alone. All those little things that we all take for granted. What has brought this on so acutely to me today was yet another well-meaning conversation with someone who wouldn’t ever want to hurt me, but who blithely called back over her shoulder as she walked away, “Don’t forget to take care of yourself first!” What idiot came up with that phrase? Just as soon as I clean up the vomit from today’s chemo, fill the medicine containers, reorder all the prescriptions, try to find something he can eat without getting sick, take care of the rest of our family, hang on to my job with both hands because without it, none of these massive debts of medical, hospital, lab and doctor bills will get paid. And oh yes, pay the mortgage, make the car payment, and figure out how to manage this dwindling bit of money to pay off which bill, if any, before the lights and the water get shut off. Yes, I will take care of myself as soon as the laundry is done, the house is clean because we are trying to keep him from developing yet another infection, the yard is mowed, the leaky toilet is fixed, and the air conditioner filter is changed. Now the next comment will be, “Get your friends and your family to help you!” For crying out loud, they have been! We are YEARS into this treatment with years yet to go. In the end, there is only me, and no one else. This path is mine. It was not of my choosing, and sometimes the exhaustion, the frustration and the grief is overwhelming, so I will ask my well-meaning friends and family to allow me to say, just once in awhile, I miss my life.
I just had someone tell me "Be strong".
I wasn't even having a weak moment, I don't even know where it came from. It was utterly ridiculous and I just changed the subject as quickly as I could so as to cover up my shock and disappointment. "Things are good" is what I told that person since anything otherwise is none of his business.
Thanks for your post, it is a good read and brings up more of those, 'things one shouldn't say'. I sit on the other end of the fence I have the CML, so I am frequently asked 'How are you?' as you stated, most do not really want to know it is a phrase that is a learned behavior. I have begun to say, 'I have been worse.' No more no less and escape ASAP. If they wonder, isn't my problem, if they are of the majority of the ones who didn't want to know anyway, then I might make them think a bit. Take care. Positive thoughts to you and your family.
This is such a roller coaster, and I think I have lost my seat restraints. Let's face it, sometimes the divide between laughter and tears is very thin, and laughter might as well win. Today we are at Hope Lodge for the next two days as he has labs, a lumbar puncture, and IV chemo. Yesterday when it was 115, and we were at home, the central air conditioner died. We live in a small town, which everyone knows everyone, so I called the repair people at home and they came immediately, but it was so overheated it had to cool before they could fix it. They stuck with it, and did manage to get it to limp back into existence, thank God, but it took hours to cool the house back down. I put him under the ceiling fan with cold washrags and ice cream, and he was fine. So, it appears that a new system will be needed sooner rather than later. Not quite sure how I will manage that, but I will think of something. At any rate, it got me to thinking. On the one hand this is a major blow, and replacing the central air will cost thousands, which I don't have, and I don't have anything else left to sell, or cash out. When I think about that, I get queasy, and tears are closer to the surface than laughter. And yet, it was a Saturday, and as I said before, 115 in the shade, and these two men came immediately, and worked out in the hot sun doing everything they could to get our decades old system running. In all this devastation, it strengthens me to think that ordinary kindness still does exist. So, "in the midst of all this agony," yet another lesson learned, or at least, remembered. It's moments like that, that bond together and sustain me, when the next blow comes. So laughter wins this round!