Unless you've walked this walk

natly15
natly15 Member Posts: 1,941
edited March 2014 in Breast Cancer #1
I'm new at this but have begun to train people in how to approach me and my BC. People just dont have a clue unless they have walked the walk. I belong to a support group which has nothing to do with cancer. One of my friends trying to help said well you feel good today, that's all that matters, so dont think about tomorrow, stay in the moment. I do stay in the moment and try to make the best of every moment, however when you've just had chemo it seems pretty normal to plan ahead for possible after effects. I was simply saying, I'm not sure how good I'll feel tomorrow, based on my last chemo experience. You can call that projecting, but with cancer treatment that to me is not projecting, that is being proactive. I know what I experienced with my first round, wasnt sure what would happen with my 2nd round, so being prepared was my only option knowing that after effects could be very uncomfortable, and as luck would have it the effects were worse than the first treatment. My 3rd and 4th days after chemo thus far have been the worst. When you've just had chemo, and are still feeling ok, knowing that days 3 and 4 are coming up, what do you say to someone who says well you feel good today and thats what matters. Any input??

Comments

  • lanie940
    lanie940 Member Posts: 490
    I would say, NO, that is not
    I would say, NO, that is not all what matters. I don't know how I'm going to feel within a few days. I have not had chemo, I opted not to, only RADs, and I am only 5 days into my RADs, I am fatigued, but I also had major hernia surgery on Oct 8th,I still have a lot of discomfort from it, even with taking Vicodin., so I could be tired from that. People just don't have a clue that just having cancer takes a toll on your emotions.I think only people who have had a dx of cancer has any idea of how we feel.
  • ppurdin
    ppurdin Member Posts: 1,181
    friends.
    I guess as hard as it is we should remember that they don,t have a clue unless they been their or are their.My family knows that Chemo week I don,y plan on anything other then recovering from my chemo treatment.Each time is different.The first treatment was hard for me.i had all kinds of side effects.The second one i thought went better but I had a horible unusual side effect 8days later.So don,t feel bad if they don,t understand.Just do what you need to get through it.by the way the little guy your holding is adorable.Take care.Love and prayers Pat.
  • natly15
    natly15 Member Posts: 1,941
    ppurdin said:

    friends.
    I guess as hard as it is we should remember that they don,t have a clue unless they been their or are their.My family knows that Chemo week I don,y plan on anything other then recovering from my chemo treatment.Each time is different.The first treatment was hard for me.i had all kinds of side effects.The second one i thought went better but I had a horible unusual side effect 8days later.So don,t feel bad if they don,t understand.Just do what you need to get through it.by the way the little guy your holding is adorable.Take care.Love and prayers Pat.

    Thank you Pat, that is my
    Thank you Pat, that is my grandson Charlie.
  • KathiM
    KathiM Member Posts: 8,028 Member
    I attempt to educate...lol...
    I say "yeah, today is a big high from the steroids to keep me from feeling sick. Unfortunately, day 3 I bottom out, and you won't see me on this day...but, trust me, I don't look well...BUT, I'm fighting the fight, and this, too, shall pass...day to day living is good, but preparing for what's coming (like taxes, and old age) are a MUST!"

    Sadly, you are correct...until you go thru it, you just don't understand...I usually end with..."and, hopefully, you will never have to experience what I am going through!"

    BIG hugs, Kathi
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    Bite me
    ...oh, oops -- that's what I WANT to say...but don't! :-)

    As you've all said, only people who have been through chemo or have been close, day-to-day support for someone going through chemo have a clue what it's like to be on the other side of that IV....I know I didn't have a clue, until I went through it.

    To say "don't think about tomorrow" to someone who is planning for their next chemo treatment is completely absurd, but I think you have to focus on concrete, practical aspects if you want to educate someone. I would say something like:

    "Well, I have to think about tomorrow and plan ahead, because I'm not physically able to take care of myself for several days after each chemo, so I need to make sure that I have food in the house, clean clothes, and prescriptions filled for the medication I'll need, as I won't be able to do any of that for myself from Tuesday through Thursday."

    If that doesn't get the reality of your experience through to them...well, then I say go back to my "bite me" suggestion.

    :-) Traci
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    TraciInLA said:

    Bite me
    ...oh, oops -- that's what I WANT to say...but don't! :-)

    As you've all said, only people who have been through chemo or have been close, day-to-day support for someone going through chemo have a clue what it's like to be on the other side of that IV....I know I didn't have a clue, until I went through it.

    To say "don't think about tomorrow" to someone who is planning for their next chemo treatment is completely absurd, but I think you have to focus on concrete, practical aspects if you want to educate someone. I would say something like:

    "Well, I have to think about tomorrow and plan ahead, because I'm not physically able to take care of myself for several days after each chemo, so I need to make sure that I have food in the house, clean clothes, and prescriptions filled for the medication I'll need, as I won't be able to do any of that for myself from Tuesday through Thursday."

    If that doesn't get the reality of your experience through to them...well, then I say go back to my "bite me" suggestion.

    :-) Traci

    Another idea...
    Natly, I mentioned your post to my girlfriend (who was by my side every step during chemo, and really does understand what we go through). She offered a suggestion:

    The day after your next chemo, call your friend, and tell him/her you need them to go to the store for you, to pick up Immodium, jell-o, soup, toilet paper, Senokot, Prilosec, prune juice, Claritin, plastic cutlery, and some movies to watch.

    Tell them that you were so busy "living in the moment" that you didn't have time to do all this beforehand.

    :-) Traci
  • New Flower
    New Flower Member Posts: 4,294
    TraciInLA said:

    Another idea...
    Natly, I mentioned your post to my girlfriend (who was by my side every step during chemo, and really does understand what we go through). She offered a suggestion:

    The day after your next chemo, call your friend, and tell him/her you need them to go to the store for you, to pick up Immodium, jell-o, soup, toilet paper, Senokot, Prilosec, prune juice, Claritin, plastic cutlery, and some movies to watch.

    Tell them that you were so busy "living in the moment" that you didn't have time to do all this beforehand.

    :-) Traci

    I agree
    Unless they live through they can't understand. Yes, we all have been enjoying every moment of our life. As much as you prepare for Chemo it will be something new and challenging with each Chemo cycle. Unfortunately Chemo drugs will have cumulative effect and body gets weaker.
    Ask directly for help.
    Emotionally - tell them back off and wish that they would never have Chemo experience as you do.
    Hugs
  • Skeezie
    Skeezie Member Posts: 586 Member
    TraciInLA said:

    Another idea...
    Natly, I mentioned your post to my girlfriend (who was by my side every step during chemo, and really does understand what we go through). She offered a suggestion:

    The day after your next chemo, call your friend, and tell him/her you need them to go to the store for you, to pick up Immodium, jell-o, soup, toilet paper, Senokot, Prilosec, prune juice, Claritin, plastic cutlery, and some movies to watch.

    Tell them that you were so busy "living in the moment" that you didn't have time to do all this beforehand.

    :-) Traci

    Traci, I can't stop laughing!
    What a great answer! Of course that lumox still won't get it and who cares anyway? People just don't know wht to say so they say anything tht pop's in their heads I think. I don't bother talking to those types if I don't have to and when I do I don't mention anything about me, makes me happy that I don't have to listen to them and bite my tongue.

    You're true friends understand and that's what really counts. But I love your sense of humor, I am still laughing. Only another chemo girl can truly understand all the things you just wrote! You have made my day!

    Hugs and Luv, Judy :-)
  • natly15
    natly15 Member Posts: 1,941
    TraciInLA said:

    Another idea...
    Natly, I mentioned your post to my girlfriend (who was by my side every step during chemo, and really does understand what we go through). She offered a suggestion:

    The day after your next chemo, call your friend, and tell him/her you need them to go to the store for you, to pick up Immodium, jell-o, soup, toilet paper, Senokot, Prilosec, prune juice, Claritin, plastic cutlery, and some movies to watch.

    Tell them that you were so busy "living in the moment" that you didn't have time to do all this beforehand.

    :-) Traci

    Traci I always love your
    Traci I always love your suggestions. Funny as this sounds, I needed every item mentioned. YUCK
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    natly15 said:

    Traci I always love your
    Traci I always love your suggestions. Funny as this sounds, I needed every item mentioned. YUCK

    Traci We can always count on you to cut to the facts ...
    Thanks for the postings, and truly inspirating attitude.

    VickiSam
  • Jadie
    Jadie Member Posts: 723
    natly
    I think you should add that one to our list of stupid things said to us.
  • Sunrae
    Sunrae Member Posts: 808
    Stay In the Moment
    Natly, your friend evidentally doesn't get much done if she's always staying in the moment. (BTW, is that the name of a song?) People think they're giving good advice so I try to give them a little slack unless they get real stupid (which she might have done). Traci was right on with her suggestion. I'm sorry that chemo has such a ugly face and affects so many people with its horrible effects. Does chemo ever start off bad and get better at the next treatment? Seems like it gets worse for so many or stays about the same. I haven't even been told that I might have chemo but I dread it for myself and all of you. My mother was so sick for a couple of days every time, I just kept a bucket near her bed. I know, I know. Everyone tells me chemo is different now, doesn't make one so sick, but I think they're lying to me. I wish you better, my dear sister. Don't let those chemo bugs get you! (Now that sounds stupid too!) Forget I said that. Love to all of you!
  • Kat11
    Kat11 Member Posts: 1,931 Member
    Sunrae said:

    Stay In the Moment
    Natly, your friend evidentally doesn't get much done if she's always staying in the moment. (BTW, is that the name of a song?) People think they're giving good advice so I try to give them a little slack unless they get real stupid (which she might have done). Traci was right on with her suggestion. I'm sorry that chemo has such a ugly face and affects so many people with its horrible effects. Does chemo ever start off bad and get better at the next treatment? Seems like it gets worse for so many or stays about the same. I haven't even been told that I might have chemo but I dread it for myself and all of you. My mother was so sick for a couple of days every time, I just kept a bucket near her bed. I know, I know. Everyone tells me chemo is different now, doesn't make one so sick, but I think they're lying to me. I wish you better, my dear sister. Don't let those chemo bugs get you! (Now that sounds stupid too!) Forget I said that. Love to all of you!

    OH Traci that was good

    OH Traci that was good