People Don't Understand

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

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

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,

Mike

PS- I quit working after 3 weeks of radiation and chemo, and I DEFINITELY did NOT go skiing or hiking after my treatments!

 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

 

 

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

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

 

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, Carol

Hello 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.   

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

 

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, Carol

Carol, 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

 

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!