CancerCompass message board discussion started by capp519 on 5/8/2008 http://www.cancercompass.com/message-board/message/all,23859,0.htm Mon, 13 Oct 2008 00:00:00 GMT Mon, 13 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I don't know if it's me or if others feel the same way. When family or friends call to see how my husband is, and I tell them how much pain he's in from the radiation/chemo, I always get a story about someone they know who had rads and came to work every day or someone who had chemo and the week after was skiing or hiking. Are other cancer treatments that different from head and neck as far as pain. I feel like they think I'm exaggerating. The only ones who understand are his cousin (who had the same cancer a year ago) and his brother (who has taken him for some of his treatments)Thank goodness for this board or I would think what he is going through was abnormal.God Bless, Carol capp519 Thu, 08 May 2008 00:00:00 GMT Why worry about it Carol? You have plenty to do and plenty on your mind to be worrying what other non-knowing people have to say. It's like saying I have back pain and couldn't work for a week and you saying you have back pain and went to work the next day. There are many different reasons for back pain, and there are many reasons for cancer pain. Anyone who thinks less of someone because they knew of somone who they think handled it better isn't worth the time of day. Every one is different, and no two treatments are the exactly the same.Don't sweat it. Concentrate on the task at hand.God bless you guys.Rick rick51 Thu, 08 May 2008 00:00:00 GMT I couldnt put it any better than Rick. All cancers are different, even here, I have noticed a huge variation in the way people respond to chemo/radiation/surgery for the same general cancer. Your plate's full enough, please dont worry about it.Best wishes,MikePS- I quit working after 3 weeks of radiation and chemo, and I DEFINITELY did NOT go skiing or hiking after my treatments! micromisterphone Thu, 08 May 2008 00:00:00 GMT  Dear Carol,i COMPLETELY understand what you are talking about!!!!  i hear the same things all the time...no one really knows what you are going through unless they visit you at your home and see it first hand.  even my family has said "come for dinner...it is ok if he has to lay down and rest"  they didnt get it (at first) that traveling meant bringing cans of food, bottled water, gatorade, tussin syrup and other meds...never mind the fact that he is on so many meds that sleeping and going for rad everyday was about all he could handle.  i too as a caregiver have felt frustrated and isolated.  friends that i thought were the closest havent been there for me.  perhaps they dont know what to say or do so i forgive them for that.  i am very thankful that we belong to a community of craftsmen (we are potters) that have been very supportive in every way imagineable. we will get through this and we need to light our own path.be well.~meesh   meesh Thu, 08 May 2008 00:00:00 GMT I usually don't care what other people think. I don't know why I let this bother me. I guess I'm having a bad day because my husband is in a lot of pain. You two are so right. The only important thing is that my husband gets better. By the way, he finished his last radiation on Friday and he had his last dose of chemo this week. Next step will be to see the surgeon. I will focus my energy on his recovery. Thanks, Carol capp519 Thu, 08 May 2008 00:00:00 GMT Boy-this one is a great point. It's like the "walk a mile in my shoes" thing-one cannot know the total feeling until/unless it is experienced personally. And it IS so different for everyone even in our little "special" club. My rad oncologist told us from day 1 that the treatments for this cancer is the hardest of any of the cancers-he said "You will hate me for having to put you through this". I was gratified knowing the truth-and the worst; because then eveything that wasn't quite as bad was a bonus.I had friends that wanted to come over, keep me company and play Scrabble or something-they couldn't understand why that wouldn't work for me and that I really needed to be alone to just BE, and cope, and breath. And again, maybe that would have worked for some of you. But they were well meaning and trying to be helpful.What I found difficult-and still do-is when people said things like-you're strong, you're positive; you'll be fine. OK-I was and I did; but then you feel you can't be honest and say sometimes, this is pure hell and you can't understand and you can't help. Don't compare me to anyone you also know! We are just normal people who cannot be strong & uplifting all the time; and our pain & suffering is real and we are just trying to get through moment by moment at the worst of it. I hope I'm getting my meaning & feelings across-that said, it is still the only real option to have life after cancer.  Gayle gayleann Fri, 09 May 2008 00:00:00 GMT  On 5/8/2008 capp519 wrote:I don't know if it's me or if others feel the same way. When family or friends call to see how my husband is, and I tell them how much pain he's in from the radiation/chemo, I always get a story about someone they know who had rads and came to work every day or someone who had chemo and the week after was skiing or hiking. Are other cancer treatments that different from head and neck as far as pain. I feel like they think I'm exaggerating. The only ones who understand are his cousin (who had the same cancer a year ago) and his brother (who has taken him for some of his treatments)Thank goodness for this board or I would think what he is going through was abnormal.God Bless, CarolHello Carol,I can relate so well with what you are saying.  I'm in  radiation treatment right now for base of tongue cancer. You can't imagine the amount of times I have heard  from  someone that such and such did not have this or that problem,or just ask the doctors for some medicine for it.  Truthfully, I have receive a lot of phone calls that I would like to have just screamed "you have no idea"!  I have disconnected my phone more and more lately since it only puts me in a worse mood to hear these things.So you are not alone.  D.    D1211 Fri, 09 May 2008 00:00:00 GMT Thanks everyone for relating to how I feel. I realize it's not that important what other people think or say, but it gets me a little down sometimes. The important thing is recovery and that's what I have to keep telling myself when I feel like this. Carol capp519 Fri, 09 May 2008 00:00:00 GMT  On 5/8/2008 capp519 wrote:I don't know if it's me or if others feel the same way. When family or friends call to see how my husband is, and I tell them how much pain he's in from the radiation/chemo, I always get a story about someone they know who had rads and came to work every day or someone who had chemo and the week after was skiing or hiking. Are other cancer treatments that different from head and neck as far as pain. I feel like they think I'm exaggerating. The only ones who understand are his cousin (who had the same cancer a year ago) and his brother (who has taken him for some of his treatments)Thank goodness for this board or I would think what he is going through was abnormal.God Bless, CarolCarol, I was just discussing this with my husband---people and their stories of other people they know--I think they are just nervous and babble.  Many times I let them know that head and neck cancer is in a league of its own and can not be compared with other experiences. That usually quiets them.Hopefully, we will never make the same mistake when someone else goes through a major illness. All anyone needs is a good listening and sympathetic ear and an offer of what can I do to to help---no comparisons/competitions please.DeniseB  DeniseB Sat, 10 May 2008 00:00:00 GMT Hello there, Carol.The Mikes are right - from their perspective on things, being patients.  I think they are both spot on, and have given countless people excellent advise, myself included.As a fellow caregiver, I completely understand what you mean.  My boss at work tells me all the time about how her sister had radiation with breast cancer and just can't seem to understand why this is so much worse.  (Of course she's a few french fries short of a Happy Meal and I'm surprised she leaves her house without a helmet everyday, but that's another story.) The best advise I can give (as if I'm qualified...) is just to try to keep in mind that you yourself also didn't know how bad this was, until you were up to your neck in it - pardon the pun.  So.  Try to understand that these people that just don't get it, well they really just don't get it.  And they aren't going to, unless they experience it themselves.  Does that make any sence?  Focus on your husband, your family, and don't forget about yourself!!!!!!!  Just take things one day at a time.  And know that someday - this will all be behind you!  Babzilla Mon, 12 May 2008 00:00:00 GMT The Mikes?!  Where did I come up with that?!?!?  I meant Mike and Rick.  Sorry.  Sleep deprived........ Babzilla Mon, 12 May 2008 00:00:00 GMT YOur subject line says it all.  They really don't and really don't want to.  They are filling the air.  That is so frustrating yet we do it.  You really only need one person willing to just listen.  I GET THAT TOO.  I have one friend who calls and says "How are you, and I mean YOU?"  I'll answer honestly and she'll say "Can I help in anyway?"  Then, I'll answer and she simply accepts my answer.  The discussion then moves on to her law school challenges and nicely pulls me away from my world of cancer husband.  She is the only one who gets what this does for me.  She makes me laugh and makes me think.  She is okay too with just listening to me cry.  She doesn't try to solve my problems or tell me a story of another person.  She just listens.  She is also my husband's friend and does the same for him.  Unfortunately, the world stopped "just listening" too long ago.  Find that one person and call them.  Call them twice a day if you have to and try not to talk to the others as much as possible.  Also, I use my husband's blog site on caringbridge dot org to update others.  This greatly reduced the amount of calling and subsequent "story telling".  Mediator Mon, 12 May 2008 00:00:00 GMT You're so right about not understanding when you haven't gone through it. Last year my husband's cousin had the exact cancer as him and although we felt so bad for what he was going through, it isn't until now that we truly realize how sick he really was. I need to remember that others don't really understand either. That's what is great about this site, it helps you work through things with other people. Thanks everyone, Carol capp519 Mon, 12 May 2008 00:00:00 GMT  On 5/8/2008 capp519 wrote:I don't know if it's me or if others feel the same way. When family or friends call to see how my husband is, and I tell them how much pain he's in from the radiation/chemo, I always get a story about someone they know who had rads and came to work every day or someone who had chemo and the week after was skiing or hiking. Are other cancer treatments that different from head and neck as far as pain. I feel like they think I'm exaggerating. The only ones who understand are his cousin (who had the same cancer a year ago) and his brother (who has taken him for some of his treatments)Thank goodness for this board or I would think what he is going through was abnormal.God Bless, CarolAs a caregiver, I can only say 'ditto' to whateveryone else has posted.  My husband, 4 weeks out of radiation, was force feeding himself a couple of fried eggs & light toast & a Boost & I called him in to finally read some of the posts on the 'boards.  He declined a PEG tube, and lost too much weight, and the doctor the other day told him he absolutely has to eat no less than 2000 calories a day or his cells won't regenerate at the rate they need to.  So now, he forces down cheese cake and milkshakes and eggs and macaroni & the ever ready Boost!   It's true - he just wanted to be left alone and get through it.  Now because he is still tired, he says he just feels like a 'waste' - but he understands that he is recovering. Just impatient.  People just don't understand, but we were fortunate to have a couple of long distance friends that just listened to me and understood that he could spend just a few seconds on the phone with them.  We're relatively new to our area, so turning down social invitations wasn't a problem.  My family is across the country, but we spoke every day, sometimes several times a day, and they really can't understand the pain, so I stopped trying to explain it or expect them to understand.  Everyone tries to be helpful, but some days were just so bad that I would cry in the shower so he wouldn't feel guilty. He still keeps apologizing to me as if this is somehow his fault! One day almost to the end of radiation he hadn't slept the night before because of the mucous and choking and spitting & I didn't sleep either and we both just ended up crying in the radiologists office.  The first time he had cried the whole treatment. It's odd, we never cried because we thought he might die.  It was his suffering through the treatment that will keep him alive that wore us out.  It is just exhausting and no one really gets it.  But THANK GOD FOR THIS AWFUL RADIATION.  So we just kind of hibernated for the entire 3 months or so.  So don't worry about people trying to understand, even though we wish they would. Just hang in there and cry when you want to because it feels good afterward.  One day after finishing radiation my husband was so discouraged because he wanted so much to feel better that he just broke down during a follow up visit.  But he admitted that he just felt better after the release (women have known that forever!!!).   I asked him last night if he could start keeping the bedroom door open while he was in there watching TV and resting - I wanted him to be less like a shut in.  After reading these posts, he asked if I understand better why he keeps the door closed.  But he is better off than many, as everyone reacts differently, but I see that everyone has the same questions & it is so helpful to be here to share the experiences.I'm glad I checked back in.  For a few weeks I just couldn't.  Everyone hear understands.  Bob actually laughed when reading people's postings about this being Hell and being dragged across the finish line. He feels the exact same way. I wish he would post, but his typing leaves a lot to be desired. It would take him forever to hunt and peck   gulfgirl Thu, 15 May 2008 00:00:00 GMT