How do I handle this?

Sonata

**I wasn't really sure where to post this---it has to do more with the emotional side of going through chemo rather than the physical side. Maybe someone here can relate.** 

While I've been going through treatment, I've noticed people saying things like "Well, you look good" or "Must not have been as bad as you imagined it would be". I am SO sick of it! These are mainly comments coming from people who see me 1 time a week (at church) and usually on the weeks in-between treatments (I go once every 3 weeks). So what do they expect me to be like? I'm young...did they expect me to take to my bed and waste the entire 5 months just laying there?

Another 'problem' I'm having is everyone always asking me how I'm doing. I mean, come on, I'm going through chemo, how do you think I'm doing? And I never really know how to answer them. Do they want the honest, medical answer?---something like, "well the diarrhea is better today but the fatigue is kicking my @ss". Or do they want the generic "I'm fine"? I have difficulty just saying I'm fine because that isn't the case at all. People act like just because I'm able to remain a member of society and leave my house to do normal every day things like pick up things at the grocery store that chemo must be a cake-walk. The fatigue I feel every single day is overwhelming. I sometimes have to lay my head down on my desk (at home) because I'm overcome by weakness...and yes, I've fallen asleep just like that. But people don't see that when I'm out in public. Other times, I feel dizzy or a wave of nausea will hit me out of left field. But I don't mention it....all that will do is make someone wonder "well then why aren't you at home?".

I just can't win. So what do YOU do? :? I want to be honest with those around me, especially the ones I know that care enough to ask. But I'm not sure what to say. I don't want to be judged for my choices on whether to stay home or go out. I just want people to understand what being on this roller coaster called chemo is like---that we have to take it one day at a time. Things may not always be what they seem. Being in public doesn't mean I feel wonderful, but being at home doesn't mean I feel bad. *Sigh*

Thanks for letting me vent. I appreciate any responses you may have.

otter

Joy,

I guess it didn’t bother me when someone said, “Hey, you look good!”.  I heard that a lot, and I took it at face value.  I just assumed the person saying it was probably expecting me to not look so good and was pleased to find otherwise.  People have a lot of preconceived ideas about cancer, some of which are not true these days.  So, when someone said “You look good,” I handled it the same way as if someone said, “I like that dress,” or, “That’s a nice outfit!”, when I was wearing something I wasn’t too fond of.  I just smiled and said, “Thanks!”.

“How are you doing?” was also something I heard a lot.  My answer depended on who was asking the question, rather than how I was really doing.  Some people who ask, “How are you doing?” don’t want an answer – they’re just being conversational.  It’s like when a telemarketer calls and says, “Hello, Ms. Jones.  How are you doing today?”  Save some time and change the subject.

Other people will ask, “How are you doing?” because they really care … only, they don’t want you to be honest.  They don’t want to hear about the mouth sores and the diarrhea, or how hard it is to handle being bald.  They want you to say, “I’m doing fine!”, so they can relax and feel better.  Usually, I would oblige those people.

Finally, some people (not very many) will ask how you’re doing because they are prepared to listen to a truthful answer and offer support.  You know who those people are – they’re the ones you can trust with your deepest feelings and darkest fears.  Some of them will fail you anyway, because they haven’t had to deal with anything as scary as cancer.  They won’t understand, even though they wish they could.  I would test them first, though, by offering an honest response.

I had a few close family members who would call during my treatment and say, “How are you doing?”, with a tone that hinted I might be ready for Hospice.  I would say, “Fine!”, and they would not believe me.  “No, reeeaaaaally – I mean it.  How are you feeeeeling???”.  The reason why I started withholding the truth from them – I did not admit I was having a rough day, or I was dreading my next infusion, or the bone pain was out of control – was because being honest with them would end up making me feel worse instead of better.  They would insist on pitying me, and they would often start crying before the conversation was over.  I really didn’t like having to be strong and cheer them up instead of the other way around.  It made me feel very odd.

“I just want people to understand what being on this roller coaster called chemo is like---that we have to take it one day at a time. Things may not always be what they seem. Being in public doesn't mean I feel wonderful, but being at home doesn't mean I feel bad.”  You are absolutely right.  Unfortunately, there aren’t very many people who can understand what you’re saying, unless they’ve had cancer themselves.

otter

gillyone

Otter is so right. Very few people REALLY want to know how you feel. I had  only one friend who knew about most of what I went through. Mostly "I'm fine" was what was required of me. That's why we have bco - to connect with those who understand.

otter

Joy, I wanted to add a couple of short stories that illustrate why it's so hard to know what to say.  Some of my favorite feel-good moments came from people I hardly know, who said things others couldn't have gotten away with.

My dh and I have a financial advisor who we see once or twice a year and we talk to on the phone monthly.  We met with him shortly after my last chemo tx, when I was smooth-bald.  I was wearing a ball cap (I typically wore caps or scarves, having decided against a wig).  He asked how I was doing, but it was with a deeply sympathetic and understanding tone.  I told him I had good days and bad days, but was generally doing well.  We met again about 6 months later, when my hair was growing back but was very short and curly.  He grinned when he saw me and exclaimed, "You have hair!!!"  It was not offensive at all.  He was happy for me, and I felt great.

Then there was the clerk at our local, small-town post office who saw me one day mid-chemo, when I went to pick up a package.  I was bald-bald and wearing my usual ball-cap, but not feeling so fantastic.  We talked briefly and nonspecifically about cancer treatment.  About a year later, I happened to see her again at the post office in a neighboring town where she'd been reassigned.  My hair was beginning to straighten after a few trims but was still very short.  She recognized me even without the ball cap.  I told her I hadn't decided what to do with my hair -- it had always been fairly long and straight, but I liked the ease of a short cut.  She looked directly at me, tilted her head, and said, "I LIKE it short. It looks good on you -- it looks sassy!". I don't even know that young woman's name, but I will never forget how great she made me feel with her comment.

So, you never know...

otter

AsiaYM

Hi, there,

People just don't get it unless they have been through it.  I always answered with generic one,

" It's tough to go through chemo but thanks for asking, could you help me with.......", you will be surprised that how many people would offer to help out on any matter. 

Gentle hugs, Asia