I can't "walk off" chemo side effects!

NatureGrrl · June 2009

I had my 3rd a/c last week (Wed.); missed a big family wedding this past weekend because my blood counts were too low and I was too weak/fatigued/somewhat nauseus. Not a fun weekend for me but the wedding was lovely, I understand, and I'm glad for that.

I'm still fatigued to the point where walking up and down one flight of stairs is enough. I skipped worked yesterday and today. If I absolutely *had* to I'm sure I could force myself to do more, but my body is so wrung out that doing more than sitting is pretty tiring and I'm not much of a martyr; to me it makes more sense to try to take care of myself and let this stuff work it's way out. I'm sleeping lots; still had some slight nausea this AM but fortunately it's all been controllable and I think I'm better on that score. And I have minutes (but only minutes) where I think I feel a tad better. So I expect to see some improvement by tomorrow or the next day -- at least, that would be consistent with my previous treatments, although obviously I wasn't this wrung out the first two times.

What's bugging me is people who don't understand that this isn't a charley-horse I can walk off, or that "eating something" (I eat when I can, but I'm not eating when I'm nauseaus!) will "make me feel better."

I try to explain that this is poison that simply needs to get out of my body, it's culmulative over time, and I'll be better when I'm better (Or am I wrong??)... but I'm not sure I'm getting through to people.

Unfortunately, one of these "people" is a family member and I'm getting royally ticked off at him. He got mad at me because I was too sick Sunday to run an errand that he was supposed to do (ignore the fact that HE agreed to do this in advance, ignore the fact that I told him several weeks ago that if my 3rd chemo hit me hard I was going to be unavailable to help in any way....) and implied that I was "milking" the "chemo thing."

I don't expect I'll ever get through to him so I'm giving up on him. But I know some people at least try to understand... do you all have a succinct way to explain that chemo is poison and you don't just "get over it" by being tough or something? I would think just those words would be enough and that would be that. Maybe I shouldn't try or care but it does bug me.

No one hates my lack of energy and strength as much as I do. No one wants me over it more than I do! But when I feel like crap, I feel like crap...

Any good, polite-but-to-the-point ways you handle this? Or do you just give them appropriate glares or hand gestures? Smile

diana50 · June 2009

hi naturegirl

what you are experiencing are the REAL effects of chemo. i think that someone who hasn't a clue of what it is like 1) getting diagnosed with cancer first of all. 2) going through surgery 3) getting toxic coctail of drugs to kill cancer cells can have any idea of what you are going through unless they have been there. i found family to be very lacking of compassion...i never knew if they were scared for me....or just oblivious to what being diagnosed with cancer REALLY means. i am proud of you saying NO to things you can;'t do....and setting limits on exerting yourself. as you said; when you feel like crap...you feel like crap..and chemo certainly makes you feel like crap. for some reason...sometimes...people in our life want us to be like we were "before cancer Dx)...and the thing is; they need to get used to the idea that having a cancer dx...in my opinion...changes you.

what to do? i think trying to explain isn;t always helpful to people who aren't going to get it anyway. i think just really taking care of yourself..in spite of what you think family is thinking..is more powerful then anything you can do.

my sister wasn't availabe to me when i was dx and in treatment. funny thing tho; as time passed...she seemed to get it and now...7 years later...seems so empathic to me and what i did go through. maybe it takes family more time..?? i don't know. the bottom line is to take care of yourself..this is such an important time in your life....i remember making the decision that i needed to concentrate on myself when i was diagnosed. i did it...and so can you.

best wishes

diana50

kfinnigan · June 2009

Maybe he should go to chemo with you...he is ticking me off! I am sorry you have to deal with that negative stuff. I started an email update after my chemos, explaining my chemo experience along with how I was feeling, etc. and throughout the process, a lot of the people on my list said thank you to me because it helped them understand the experience I was going through and helped them empathize. AC is hard core! I had to take a week off after each dose dense AC (4 total) and I felt like CRAP and got worse for me each treatment. Listen to your body, that's what my onc told me and all the nurses...REST!!! Please take care of you! I wish you well and hope your treatments are over soon.

Hugs, Kari

Lisa-Lisa · June 2009

I hear you and can say I just let everyone know that this is not a good day. There is nothing you can say that will convince them so, YES let it go and know that you must take care of yourself first. I finished chemo 2 months ago and still experience days of fatigue and bone/muscle aches, not as bad as when the chemo was running through my system. On to better days, they will come

Anonymous · June 2009

I agree with Lisa-Lisa..let people know it is not a good day. I also think hand gestures and faces work equally well. Although some people are just as thick as a friggin' brick. Another thing to keep in mind, is that perhaps, maybe not, but perhaps what you are going through is scaring the crap out of him and the way he tries to deal is to pretend it's not happening. Not that it makes it any better for you..just saying though.

Don't waste your energy on people who "just don't get it" - focus on you - if they can't deal well for now ...tough luck.

Rant, rave, cry, do whatever you need to do to get through this and yes better days will come.

Mom_of_boys · June 2009

Yep, I understand! Worked full-time during chemo (sometimes even more than FT). Now I'm on to radiation. Missed 1/2 day of work on Friday because of 2 doctor appts and fact I was just plain tired. My boss asks me Monday morning how I'm doing... I reply, "Pretty good, BUT blood counts are down and doctor wants me to slow down." HE says, "Well, can't they just give you a shot for that?"

IF you figure out a good response, please let me KNOW!

konakat · June 2009

They just don't get it -- especially when the worst SE's happen 2-3 days later. Unfortunately, if we don't look horrible we must be OK. Tell them how long chemo takes to get infused, all the drugs you need to take to prepare you body to even handle getting the chemo, and for heaven's sake, if it caused our hair to fall out it isn't a sugar pill.

I made the big boo-boo of not saying how crappy I felt. So, even with mets to my spine, guess who shovelled the driveway this winter? I've mowed the lawn once and won't anymore. What do they want to see to know we are sick and hurting? Gross oozing sores? Barf all over the place?

Sorry about this Naturegrrl -- your venting session has becomee mine!

It could be part of their denial -- that they're scared and want to minimize our suffering so they feel better. Or they could just be @sses. I think some people fall into one category, some in the other.

I think you should explain the whole chemo process, including the prep and after care. And the SEs. Send them to Medline (http://www.nlm.nih.gov/medlineplus/druginformation.html) and let them read how these drug wreak havoc on our bodies. If that doesn't work, bold hand gestures and called for. If possible, barf on them.

NatureGrrl · June 2009

Oh, gosh... thank you for all the support, the reminders that I need to take care of me, the empathy! I think mostly I needed to vent but it's so incredible the way y'all understand and relate. Also, a couple of you raised an excellent point that I should remember: this brother keeps his head way deep in the sand and doesn't seem to be able to deal with serious illness and dying. You'd think I'd remember that after some of the things I've been through with him (denial over dad's terminal illness, for starters) but for some reason I guess I give him more credit than he deserves for being able to deal with harsh realities. Not everyone's cup of tea, I understand we all have limits, and he can only do what he can do... however, doesn't make me not want to kick his keester at times

And, konakat, thank you for the huge and unexpected laugh! Laughing Barfing may be the best revenge!

I know I probably sound sappy and all but you all really are the greatest, and I'm so glad there are ways for women like us to connect and share... can you imagine how much lonelier and harder it was before the Internet? Thank you and a huge hug to you all! I'm going to go to bed with a smile on my face and a lighter heart!

LRM216 · June 2009

Don't forget Naturegrrl, not only are you suffering the effects of chemo, but your counts are also low, that is sapping you tremendously. Can you say "flip the bird" to those that don't understand? Hang in there, WE all know exactly what you are feeling, "outsiders" (whether they love us or not) will never quite understand, no matter what they say. Sending you hugs -

Linda

GratefulGal · June 2009

Hi NatureGirl - Boy - wouldn't it be great if we could "walk off" these chemo SE's!

I don't think that anyone who hasn't gone through chemo can truly understand it's side effects and how physical, mental and emotional they really are. 2-3 days after each chemo I was down for almost 5 days, each and every time. And talk about being rough on yourself. You always think you should be able to do more, and just can't. I was very blessed with the support of family, friends and my office. I tried my best to let them know what I was going through on all three levels and I realized that is ALL that I could do. How someone responds is about them. Unfortunately, when you're going through something like this, the last thing that you want is someone to be intolerant of your situation.

Keep coming back to these posts~ While I was going through my treatment (my last one was 6 months ago today - I am still on Herceptin through August) I continued to come here and get strength from all of you - and just so you know - I don't think that any of us "milk" the chemo thing. It just plain sucks!

I am sending you electronic hugs - ((((((((((((you))))))))))))))

Laurie09 · June 2009

I'm sorry you're going through that.

I think it's really hard for other people to understand what we're going through. I found even on my worst days when I felt like crap, people didn't understand because to them, I "looked fine". Even the most well meaning people who tried to act concerned sometimes say things like, "you look great. you're handling this so well." Meanwhile I feel like I've been hit by a freight train.

Regardless, you need to take care of yourself and know that you're not overreacting. AC is very hard. I just finished my 4 AC and am starting taxol, and I feel a whole lot better.

Hang in there. You will get through this.

desdemona222b · June 2009

Yep, I understand! Worked full-time during chemo (sometimes even more than FT). Now I'm on to radiation. Missed 1/2 day of work on Friday because of 2 doctor appts and fact I was just plain tired. My boss asks me Monday morning how I'm doing... I reply, "Pretty good, BUT blood counts are down and doctor wants me to slow down." HE says, "Well, can't they just give you a shot for that?"

IF you figure out a good response, please let me KNOW!

How about, "Well, I guess if they could they would. There aren't any shots that I know of that will magically raise your blood count."

Mom_of_boys · June 2009

Thank you, desdemona! My boss honestly thinks my fatigue, SEs, and blood counts could be "cured" with a single shot. After my first chemo, he asked how my weekend was... I said, "So-so. Threw up a few times, but I'm okay." He then said, "One of our clients had chemo and SHE never threw up. Would you like for me to call HER and see what SHE did?" He honestly thinks all cancers and chemo are the same...

Y'all are right... unless you've been thru it yourself, you just don't get it!

konakat · June 2009

Yeah, they think if you aren't throwing up all over the place you're OK. Well, for months I felt like that microsecond before you barf, but never do. I would tell people, imagine the worst hangover and the worst flu with aches in every bone, and multiply it by 10. Then you have me on a good day. Follow that by "the look" -- that will shut em up!

crazy4carrots · June 2009

I am absolutely in awe of all you women who have continued to work throughout chemo. I'd never experienced the extreme fatigue prior to tx (mostly due to low wbc; in fact I was up to 12 neupogen shots between tx). Konakat explains it so well -- imagine the worst flu or hangover and multiply by ten. You should all be receiving pats on the back and bonuses for continuing on the job.

Hugs to you all, Linda

(p.s. I'm imagining "the look" Yell )

junie · June 2009

here's how I tried to describe my chemo fatigue to family/friends----imagine yourself standing in a swimming pool in water up to your neck. You need to run to the other side of the pool (can't dive under the water and swim!). Most people know how hard it is to run through water (the deeper, the more difficult).....then, I would say--imagine yourself in syrup up to your neck in a pool and you have to run to the other side----some people understood what I was trying to describe; some didn't.

I did work all through treatment, but I had a great support group for those "syrup days".

jld724 · June 2009

One of the things that really helpd me get through chemo (I finished just three weeks ago) was recasting my feelings about how I felt. I tried not to think of myself as sick. When I felt bad, I would shut my eyes and imagine the chemo destroying cancer cellss. When you don't feel good, just know that you're getting well not sick. I hope this makes sense.

unbound · June 2009

Good night to anyone who is out there. Situation. I'm hired on FT even after fully explaining my diagnosis and treatment. 2 courses of chemo, 5 days out of work in 2 mos, and now I'm told I should go part time because I'm "so sick" and your SE and possible need for related time off are so unpredictable. Not working isn't an option. Part time? It would be difficult to make ends meet.

How are yall managing to do it all w/out loosing your jobs?

konakat · June 2009

Since they knew about your dx from the get go they certainly cannot force you into parttime -- legally you are protected. You are protected under the American Disabilites Act so they have to make reasonable accommodations for you.

How do you feel? Can you work fulltime? Can you do flex time to make up hours if you miss a day? Could they just be worried about you and think you should do parttime now and then go back to fulltime? They sound like a reasonable bunch so I think you should reassure your manager and HR director that you can work and once the chemo is over you will be 100% for them (if not now) -- they hired you because they think you are the best person for the job.

Here's a good website for advice on working through cancer -- it might have some ideas to help you: http://www.cancerandcareers.org/

For my job I ended up working 4 days/week to get through the chemo. They really couldn't say no. It was hard sometimes, but I made sure I got meds for the se's to help me along.

I hope this helps -- and that website I mentioned is really good.

And, I'm so envious that you're in the US Virgin Islands -- could I ever use a dip in the ocean right now!!

Elizabeth

unbound · June 2009

Thank you for the in-put. Helped to see things from a different perspective. Had a fabulous day at work. Adore my clients and feel blessed to have such a great job. I may have been over reacting. It was a stressful week for everyone. Maybe I wasn't..Either way, I'll turn it over to a higher power. In the mean time, I'll do the best I can, then whatever happens I'll know in my heart I tried.

How do I feel? I try not to think about the cancer dignosis. The books I read made me feel sad, angry, and anxious. After 5 or 6 nights of staying up late reading, I put all the books away and decided to keep going as if, until all my hair fell out.

At that point I had to start talking about it. I found that everybody knows someone who has had cancer. I keep up beat about it so as not to scare anyone. I tell them how all my fears turned to relief when I learned I wasn't going to die or get anything cut off, and I feel grateful for that.

Had really bad constipation after 2nd course of chemo. I wasn't expecting that. It wont happen again. Lot's of raw vegies and fruit daily. Mangos are dropping off the trees around here so there wont be a shortage of fruit for awhile. Very tired for about a week after ea treatment, but so far, I've bounce back pretty quick. Absolutely dread the next round, but I won't think about it now.

How are you doing?

I can't "walk off" chemo side effects!

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I *can't* "walk off" chemo side effects!

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I can't "walk off" chemo side effects!