Fay A. Posted October 1, 2004 Share Posted October 1, 2004 Randi's post touches on something that I has been a concern of mine since my diagnosis. None of what I've dealt with as a Lung Cancer patient has been fun. I hated losing my eyebrows. I hated being sick from chemo. Recovering from all those thoracotomies was rough. But something I did not want then and do not want now is for those I love to have to constantly be cognizant of what they're saying for fear they may hurt my feelings. And I don't want them to worry about what they actually have said, or feeling guilty for it. So I chose to control the tone of things when my hair fell out. It was going to be as humorous as I could make it, not so much for me but for those I love. If I could laugh and relax about the bald issue then they could do so. For those of us who have Lung Cancer, let's try to not put anymore on our loved ones than we are already doing. The kinds of things that still haunt me about my own Mother's experience with Lung Cancer are exactly the kinds of things that are mentioned above. The little, thoughtless, slips of the tongue that wounded and shouldn't have. Quote Link to comment Share on other sites More sharing options...
cathy Posted October 1, 2004 Share Posted October 1, 2004 Sweet Fay, My dad was just like you..Never ever would he have let me know how bad he felt..I will never forget him telling me that he hated what his illness was doing to me, imagine that, worried about me, he was awesome and so are you..XO Quote Link to comment Share on other sites More sharing options...
J.C. Posted October 1, 2004 Share Posted October 1, 2004 Mike was also the same way, always worried about me getting tired or sick. Never thinking about hinself, if it is possible, I love him more everyday. J.C. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 1, 2004 Share Posted October 1, 2004 Becky did share her pain with me, her frustrations. I saw the effort it took for her to function each day. At the same time, she did not worry about words. So we could joke with each other about her hair and her scar and stuff. And I am grateful for that, too. So there is no right way; I would have hated to think she felt like she needed to protect me. I wanted to share every little bit of the pain I could. Curtis Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 1, 2004 Share Posted October 1, 2004 Lucie and I have been pretty honest with each other through all this. The hardest part was the first year, when she was sick so much. But even then we had moments of humor. We would kid that I had more hair than she did but hers would grow back! The turning point was a year ago, when she was in rehab hospital. I was checking her out to bring her home, but we were going to a church luncheon first. I realized I had packed her floppy hat that she wore most of the time. I said I would have to get it out before we got to church. At that time, she had fuzz all over her dome. She said, "Oh, don't bother! They can see me just as I am!" I was so proud of her. And when we made our entrance into the parish hall (we were late), she got a standing ovation. Yep, I wept. These moments are the good moments, nnd for us there have been many, despite the trials. Thanks, Fay, for your thoughts and concerns about us care givers. Blessings. Don Quote Link to comment Share on other sites More sharing options...
stand4hope Posted October 1, 2004 Share Posted October 1, 2004 Gosh, Don. I got big tears when I read that. I bet you did cry and I bet the people doing the clapping did, too! I'm wondering if Fay was kind of meaning that the cancer patients shouldn't be so sensitive over things that we, the caregivers say. Did I interpret it correctly, Fay? If so, I appreciate you saying that. I know my husband isn't ever on the site to hear that advice. I always have to be very careful what I say and how I say it and it makes me crazy sometimes. A perfectly innocent comment will sometimes bring a harsh reaction. A couple of weeks ago prior to his latest scans, he said something about having to go get more *!@!# tests. We talked about it a bit, and then I said something about unfortunately having to continue to get them for a long time and he said, "THANKS! I needed to hear that!" Well, I didn't mean to upset him and we were having the discussion, and it just seemed like an innocent comment, but was not "heard" that way by him. He apologized and said he was just tired of the whole thing, so then we were able to get into the "meat" of the problem which was a good thing. Anyway, I don't think Fay was so much talking about hiding how you all feel (physically and mentally) from us, but asking that you not get upset with us if we screw up and say something that might hurt your feelings. Is that what you meant, Fay? Love, Peggy Quote Link to comment Share on other sites More sharing options...
Connie B Posted October 1, 2004 Share Posted October 1, 2004 My Dear Friend Fay, I'm with you on this one. As the Cancer Patient, I have tried to keep an upbeat attitude during any and all of my ordeals. Like you, when I lost my hair 9 years ago, I too made it a fun and silly moment. After much laughter and kidding about it, I went that night and took a bath. I cried my heart out that I lost my hair. Within about 5 minutes my cry was over and I never cried about my hair again. I have lots of funny stories being a chome dome! Sometimes today, I wish I still was a chome dome! It could be arranged I'm sure!! I can remember my dad, mom and sister during there last months of being a lung cancer survivor. My dad tried very hard to fight this beast, and for him it was very very difficult. He was in a LOT of pain, but never did he complain. My mother, was in very little pain, (thank the Lord) she made her funeral arrangements and made fun of who was going to bring what to the dinner after her funeral. She said she wanted to bring the donuts.(we bought donuts in her memory) I remember bringing her home from the hospital so she could come home to die, she sat in the back seat of the car and just stared out the car window never saying a word. Broke my heart, but she was in deep thought and I like to think she needed that moment to just take in the beauty here on Earth. My sister Bonnie made her journey sound like the trip of a life time. She too had a LOT of pain, due to brain mets, but she kept her pain silent. When she lost her hair, she sat in my kitchen with other family members and she said, let's have a hairpulling contest. Everyone can walk by me and take a tug, the one with the most gets the most!! We laughed and did just what she wanted. It was a very joyous happy moment, and one for me that I will NEVER fine depressing. We had a ball! I often wonder what someone would have thought had they walked by my house and looked in the window! I never REALLY knew what my family members went through until I became a Lung Cancer Patient! I always felt I knew what they were going through, being that I went through it with so many people, but the truth is, I never had a clue!!! I do NOW!!!! This is not a picnic or a cake walk by no means, but it is a family/friend disease. I remember some people saying things to me that really didn't set all that well, but after giving it some serious thought, I would end up apologizing to that person if I ever said anything hurtful to them. When I went through my chemo, I was on an emotional rollercoaster ride. I would cry at a drop of a pin. I told everyone that I was a cry baby right up front, and I told them I didn't really know why, but (I) was the one that took control and (I) was the one that made them feel more at ease, and by doing so, it was that much more comfortable for me. Like all things in life, some times you just have to let some things slide off! Life is tooooo short to sweat the small stuff. Thank you Fay for bringing this up. Love & Hugs, Connie Quote Link to comment Share on other sites More sharing options...
cathy Posted October 2, 2004 Share Posted October 2, 2004 To this day I am so grateful that my dad did protect me..I am not saying I didnt know what was happening... I was with him everyday and I did see alot, more than I care to mention or remember and I am haunted by so much of it..I think as parents thats what we do, protect our children, whether they're 10, 20, 30, 40 and so on and thats what my dad was doing or at least trying to do, protect me..Until his very last breath... Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 2, 2004 Author Share Posted October 2, 2004 Peggy, you nailed it. I have tried very hard to not be overly sensitive about things. I don't mean we should hide how we're feeling. But I do mean that we need to be reasonable in our expectations of others. And I guess my comments were really more geared to our children. I'm a vain female. Truly, the deformities that the treatments for Lung Cancer have caused to my body are profound. But every day I remind myself that I am more than any of my individual or collective parts. I cannot allow my children or anyone else who loves me to feel guilt over an innocent comment about my hair or the lack thereof (or my nails, or my skin, etc.). If someone says something genuinely cruel, that's different. But we're talking about something as superficial as hair. No one should spend a sleepless night over that. A number of years ago I attended a formal event with my husband. We sat at a banquet table with many other folks. During dinner those of us at our table were talking quietly amongst ourselves when my husband-in a voice that carried across the entire banquet hall-said..."Oh My Gosh! You've dyed your hair red!". Dead Silence, not only at our table but throughout the room. I put down my fork, wiped my lips with my napkin, turned to my husband and said "Yes Dear....6 weeks ago. So nice of you to notice." It's just hair. Quote Link to comment Share on other sites More sharing options...
MayFrog Posted October 2, 2004 Share Posted October 2, 2004 Reminds me of a couple of weeks ago (after my onc appt that placed my disease as "stable").....I told my mother I was going to Foxwoods (casino) for the day with my husband.......she said, "oh great, you really need a day to yourself......have fun and really let your hair down!".......I said, "Ma, what hair?" Dead silence on the other end of the phone......til I started laughing, then she laughed and we ended the conversation in tears, still laughing. Gotta take it one day at a time, one strand of hair at a time......... Mary Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted October 4, 2004 Share Posted October 4, 2004 AMEN!!!! I so agree with the need to laugh instead of crying-tho a few of your stories brought tears! The first time mine came out I went to the beauty shop to have them wash it really good. It would of plugged up my drain at home. I could see the mass of hair she was pulling out and tears started slowly. My beautician kept wiping them with a towel. After she was done she took me to the back to give me a moment. That was all it took. I never cried again. She cut it short, and I loved it. I always had very long hair. I later went totally bald. I had a few wigs BUT-------- I found later I liked scarves better. I went to Walmart and bought several different types and styles of seasonal material and cut them to fit. I have lots of dog ones-DUH! none with pugs on them tho. I have always said when I did not have hair people were nicer. They let you at the front of the lines at stores, they hold doors, etc. Cancer can either do you in at the diagnosis or you can live everyday and enjoy it and the cancer comes second! Love ya Cindy Quote Link to comment Share on other sites More sharing options...
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