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Side Effect-No Life

Dec 15, 2008 - 12 comments

As soon as I start feeling better, I start feeling sick at the idea of chemo again.  It isn't for over two more weeks, but that seems like tomorrow to me.  God, I am barely able to function as it is, I can't turn around and face that again so soon.  If it didn't take so damn long to get over this combo that would be different but...   This is the first chemo where I have understood what the chemo nurses were talking about when they talked about "anticipatory nausea".  They tell that to the new people who get sick even with nausea drugs, but those are not the people that usually have that problem .  When you are new, even though you have gone through it a couple of times you don't really know what you have gotten yourself into.  No, for the kind of terror it takes to actually have anticipatory nausea, you have to be on chemo a lot longer than that.  I know this stuff is keeping me alive, but it is pulling me away from the world before I am gone.  

With this combo of drugs I am unable to deal with people.  I don't feel depressed or panicky or anything, I just can't talk to people, or write to people, or transact everday business with people, which means I don't have friends over, I don't call anyone, I don't write anyone, not even emails.  I know it is this combo of drugs.  It has happened every month that way and after about a week and a half, or really two weeks I can get up and running again and I go to to Church and go out a little.  I don't leave the house for two weeks after chemo. I don't even do my bloodwork the week (or two) after chemo.  What's the point?  I know when I feel lousy and when I have to go to the hospital.  

Everyone on here thinks that I have pulled away from MH for some MH reason, but that is not it at all. I just can't make myself get on here or do anything else for that matter.  I sit and watch HGTV, look at my pretty Christmas decorations, or stare into space, and I read 7-9 books in the two weeks after chemo, but I just CAN NOT make myself interact with people or do anything physical, like walking.  I don't clean the house, I don't cook, I don't shower very often, I don't do ANYTHING for two fricking weeks. I feel like I have been given one of those drugs that paralyzes you, but your mind is still whirling away.  For those that don't know this, I am not a sedate person.  I am one of those people that always has 20 things going at once.  I can't watch TV without jumping up and doing stuff during the commercials. I usually read or sew while watching TV (doesn't it **** you off when you are in the kitchen fixing dinner and the person (usually husband) on the couch is staring at the TV and when you ask them what just happened or what someone said they say they missed it. How the hell could they miss it?  I am keeping up with the show, the laundry, two emails, dinner and he can't hear a fricking line from the movie?  I will have to consult Mrs Peek on this phenomenon.  I think she might have some thoughts on this subject.)   I would chalk all of this up to depression if it didn't go away after a couple of weeks.  It is just the most bizarre side effect, because it isn't listed as one, it is hard to explain, people think it is psychological and not physical, and you just feel like your mind is in someone else's body and you can't make it do anything.

We all get on here & talk about the side effects of all of these drugs, but I suspect that this & others are ones we don't talk about.  I think whether it is the drugs or just a need to be away from people we all go through these times of withdrawal.  It is hard to be around people because for the most part they just don't get it.  Also, we don't want anyone to see that we are weak because than we are not being "troopers", we are not "inspiring" anyone and I am so sick of hearing that. Just how the hell do I inspire anyone?  Because chemo hasn't killed me, because when I am out in the world I seem pretty normal, but they don't see the mess I am at home? Just what exactly about fighting cancer is so fricking inspiring?  When did it become my job to make YOU feel better about my cancer?  

This side effect of withdrawing from the world is in addition to the ones listed on my Handy Dandy Chemo Tracker.  BTW does anyone know how to delete a tracker?  I want to delete the weight one.  See, I should not have to ask anyone about most computer related issues, but I have turned into an idiot.  Looking at all of the side effects I listed, I guess it is no wonder we can't make ourselves do anything sometimes.  Good grief, just looking at that list makes me tired.  I don't have the energy for all of that.  LOL  Maybe adding that tracker wasn't such a good idea after all.  

I was trying to understand some of this and trying to find a way to explain it to other people, but I don't guess I did either of those things.  I am still baffled by so many things about cancer & chemo.  

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483733 tn?1326802046
by TrudieC, Dec 15, 2008
Jan, there is no way I can understand what you are experiencing but I do appreciate (as do many others, I'm sure) that chemo does affect you this way and is so hard on you.  Those that love you wait for you to rise again, enjoy and cherish the notes you manage to do, and just hope and pray that this awful process works for you and that we will all have our Jan back.  This is an investment in your future and your life.  I'm glad to see you vent about it.  

Big hugs, Trudie

Avatar universal
by cirella, Dec 15, 2008
Hi Jan!  I know it's d@mn frustrating for you not to be your "usual" self.  I don't want you to add feeling badly about it to your list.  We understand that you must do what you can for yourself.  If that means sitting in front of a roaring fire and comtemplating things, then do that.  This chemo is hard on you.  

Trivial...and I DO mean trivial...MH stuff is not important.  You need to care for yourself.  We're here for you any time.
LOVE you!

187666 tn?1331176945
by ireneo, Dec 15, 2008
I agree - relaxing in front of the TV, reading books, taking time for yourself are all worthy activities. After all, your body is trying to fight and you should sit back and let it do its thing. If people don't understand that, then they can go eat worms.

I solved the TV problem by getting a tiny one for my kitchen. It's black and white but at least I can follow the program. Of course all that will change in Feb. when everything goes digital. Shoot, guess I'll have to spend less time in the kitchen. Sounds like a good plan to me.

Don't worry about not writing. We'll still be thinking of you and loving you.   Hugs,  Irene

349465 tn?1289085364
by Teresa222, Dec 15, 2008
Jan, your Journal entry helped to to understand why I have avoided my best friend for three months.  I just CANNOT talk to her.  Now I know the reason. It's just another side effect not listed on the side of the package. (She is not the only friend or family member I have avoided.)  Some I keep in touch with, others I avoid.  There is no personal reason for this avoidance. I am not mad at them, in fact I love them dearly.  It's just that phantom side effect.
Teresa

356929 tn?1246393356
by Sandymac, Dec 15, 2008
Jan,
    Don't worry about MH.. If you feel like writing, that's great.. if not, that's fine too. Just BE. We're here if you want to chat.. if not.. that's also fine.. I couldn't possibly know what you are going through, but remember this.. and I think I can speak for all of your friends on MH, just because you  aren't in touch as much,you are not forgotten..So just do what you do and take care of yourself.. ! We'll still be here when you're ready to join us...

Love you,
Sandy

577974 tn?1232526374
by Janet535, Dec 16, 2008
Jan,
I think what you are feeling and have expressed in this journal is something many of us that are on long term chemo experience. We just don't talk about it, but I'm glad you put it into writing, I now know, I'm not the only one that feels this way and behaves in the manner you describe. I can fully relate to all of it. I was beginning to think it was just me but now that you have "opened the door" so to speak I see Teresa also feels the same way. I've tried to "snap" out of it as I'm sure you have, but it simply isn't that easy...




282804 tn?1236837191
by Jan214, Dec 16, 2008
It is nice to know that I am not forgotten.  : -)  I do miss everybody and the comraderie of the forum.  Hopefully this chemo is working and it won't have been for nothing.  Just pray please, that those tumors shrink or just go away.

Teresa it is not you.  Some people are just hard to be around. Even if they weren't before, now sometimes the idea of seeing someone has me physically pulling in, and tightening up with stress.  It is mild and I din't notice it at first, but it is like clenching your jaw and not realizing you are doing it until you stop.  I have to make a supreme effort at times to physically relax because stressing like that makes your whole body hurt & I don't need more of that.  Don't worry about anything. Whatever is different about you is either from having cancer or from chemo, so not your fault at all.  

Love ya all!!

354706 tn?1279474395
by PinkTissue, Dec 28, 2008
Jan - take good care of yourself. Miss you and I hope that the chemo really works for you.

238582 tn?1365214234
by junamgen, Dec 29, 2008
Resting is all what I've done while on chemo IPand IV for 6 month. The only lucky thing is my parents were taking care of me for the whole year.  I was always wonder how some one can deal with chemo and working full time.  I often thinking about you and please make youself as confortable as possible.  I'll pray for the chemo to work for you

Happy New Year!

Peaca and Love
jun



415684 tn?1257332918
by JC145, Jan 26, 2009
Just saw this journal ... and .. simply put .. I totally understand and agree.  Judy

282804 tn?1236837191
by Jan214, Jan 28, 2009
I hate it that anyone has to go through this but at least we know it isn't just us.  There are way to many things we don't talk about and it is time to quit doing that. If we can't talk about ALL of the issues with cancer and not just the physical ones we won't be able to help others when they go through the same mental and emotional things.

765463 tn?1261803296
by MercyJ, Dec 26, 2009
Jan
I cried many tears reading this it really hit home in alot of areas. Thanks for being real and saying it as it is for many of us. I am also a Christain and I think people exspect us to be stronger. When my Mother took me to chemo once she saw this thing that said find something to smile about. That day I did not even have the energy to do that. And that was the last thing I wanted to hear. Somedays I am lucky if I can even get dressed and make it to my chemo treatments. I am realizeing I am a cancer patient right now and that is ok. I deserve to be spoiled and tell people my needs. I found that finding a group of people that will help when called upon really helped me. I pray you will not be to proud to reach out to your church family and friends and have them help with housework, shopping, and cooking when needed. It tooke a while to do this because of my pride. So glad I have now. I have found even my x co workers love to help .
Karen

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