why doesn't chemo get easier?

maglets
maglets Member Posts: 2,576 Member
edited March 2014 in Colorectal Cancer #1
Ok so I gave blood today....round 4 tomorrow of oxy and then 2 weeks of xeloda. for the first 3 rounds I was up and ready to fight. This week I just feel blue and under the covers. I think....I don't want to do this again...and yet of course we all do it again and again.

Once you know how crappy you are going to feel the fight seems to get diminished.

sorry just whining....I know tomorrow morning I'll be up and at em...and then all that oxy headache and neuropathy...blah blah blah

good luck to everyone else with infusion this week....sorry having a moment
love to all

thanks
mags
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Comments

  • lisa42
    lisa42 Member Posts: 3,625 Member
    you've come to the right place to vent
    Hi,

    You've come to the right place to vent- we've all been there. I can totally relate to the lousy feeling of "I REALLY don't want to do this today- WHY do I have to do this?!"
    Sounds like you have to give blood the day before like I do. Is that an insurance requirement, by chance? It is for me. Here, I have a port and apparently most of the chemo patients at my oncology office get their blood drawn by the nurse when they access the port right before starting the chemo infusion. This only makes sense, but my insurance won't allow my oncology office to bill for it- I have to go to a separate lab the day before each time and get the blood drawn out of my arm. I HATE getting my blood drawn out of my arm! Especially because the woman at my lab makes it hurt! There's a man and a woman- the man does a decent job, but I just grit my teeth each time the woman is there, knowing it's going to hurt. It's like after she puts the needle in, she shoves it into me further as she's drawing the blood & I always end up with a bruise from it when she does it. The nurses at my oncology office has checked and plead with the insurance about the inaneness of this requirement of theirs, but to no avail.
    OK- there's my own venting!

    Hope your infusion goes well and the oxy side effects aren't too unbearable. But, you know what to expect. You'll get through this- you WILL!

    Take care,
    Lisa
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    it ok
    mags i totally understand. i was in tears all day monday and i got er done yesterday and here we go.one more step to NED. we all just need to stick together thats what helps me.by the way i am getting a steroid so that explains the face swelling,thanks a lot and hope you feel better Godbless.....johnnybegood
  • maglets
    maglets Member Posts: 2,576 Member
    lisa42 said:

    you've come to the right place to vent
    Hi,

    You've come to the right place to vent- we've all been there. I can totally relate to the lousy feeling of "I REALLY don't want to do this today- WHY do I have to do this?!"
    Sounds like you have to give blood the day before like I do. Is that an insurance requirement, by chance? It is for me. Here, I have a port and apparently most of the chemo patients at my oncology office get their blood drawn by the nurse when they access the port right before starting the chemo infusion. This only makes sense, but my insurance won't allow my oncology office to bill for it- I have to go to a separate lab the day before each time and get the blood drawn out of my arm. I HATE getting my blood drawn out of my arm! Especially because the woman at my lab makes it hurt! There's a man and a woman- the man does a decent job, but I just grit my teeth each time the woman is there, knowing it's going to hurt. It's like after she puts the needle in, she shoves it into me further as she's drawing the blood & I always end up with a bruise from it when she does it. The nurses at my oncology office has checked and plead with the insurance about the inaneness of this requirement of theirs, but to no avail.
    OK- there's my own venting!

    Hope your infusion goes well and the oxy side effects aren't too unbearable. But, you know what to expect. You'll get through this- you WILL!

    Take care,
    Lisa

    blood
    Oh thanks so much Lisa...I know it's drivel but there you go. Yes I understand about the blood...i have to do it because oncology won't draw blood right before infusion.

    You are so right...some people are so much better at the iv needle....I think sometimes when they push too hard it goes through the vein and out the other side...sometimes lots of bleeding and bruising. I don't have a port so i worry about tomorrow too because when you are infused for so many hours the infusion site can be bad

    honestly whine whine whine
    I'd be better to have a glass of wine

    Thanks Lisa....

    We WILL ge through
    Hugs
    Mags
  • maglets
    maglets Member Posts: 2,576 Member

    it ok
    mags i totally understand. i was in tears all day monday and i got er done yesterday and here we go.one more step to NED. we all just need to stick together thats what helps me.by the way i am getting a steroid so that explains the face swelling,thanks a lot and hope you feel better Godbless.....johnnybegood

    steroid
    I am so happy you found the answer to the face swelling....that will make you feel better at least understanding what is causing it....hang in kiddo

    yes please let's stick together

    mags
  • Julie 44
    Julie 44 Member Posts: 476 Member
    maglets said:

    steroid
    I am so happy you found the answer to the face swelling....that will make you feel better at least understanding what is causing it....hang in kiddo

    yes please let's stick together

    mags

    Feeling the same way
    I knew exactly how you feel...Everytime I feel good I have to go back to treatment..It becomes quite a drag..What gets me through is I keep thinking when I am done I will have a BIG NED BBQ...I am also looking forward to going to the beach this summer at Wild Wood NJ...So just keep looking forward to something..Don't forget when you feel tired and like you can't go on any more just come here and chat to us.People here are amazing about getting you past your difficulties...Trust me it helps soooo much...I have one more cycle to go and them I am DONE DONE DONE !!!!! Looking so forward to that. Your time will come just hang in there and take one day at a time. Sometimes you have to take one hour or one minuet at a time just keep on going and you will get done too..Good luck
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    I feel for you
    It sure doesn't does it. Every once in a while I get a chance to skip 1 treatment. I go every other week at this point. I jump at the chance. By the time I feel "normal", time is up and it's back to chemo.
    Good luck with it, I'll be thinking of you.
    Hope it goes fast and is non eventful
    -phil
  • VickiCO
    VickiCO Member Posts: 917
    Aw Mags!
    I am sorry you are feeling yucky. I know how you feel. I am just getting over my last round (ended 3/27) and have to psych myself for the next one (starts 4/20. I know I will do it, but I really don't want to! It's not whining - it's our reality.

    Lisa, I get my labs the same day as infusion. Never had a problem with insurance. And I have to say, I am lucky - my lab gal is the best! I have yet to feel it when she inserts the needle. When she was on vacation, I was worried, but her replacement was good also.

    Hugs to all, Vicki
  • jenalynet
    jenalynet Member Posts: 361 Member
    Same
    Hi,
    I get the same feeling until my tiredness leaves...then I feel better as my energy comes back. We just keep going...Hugs to you, you are not alone..Audrey.
  • kimby
    kimby Member Posts: 797
    Well, pifle!
    It is worse somehow, the day before infusion. Why is that? For me, the anticipation is worse than the reality. When I'm dealing with it I just plow through, but knowing I'm going to start all over again....I HATE that! Just know that you aren't alone. Maybe we can name it "the day before blues"....kinda catchy!

    Kimby
  • robinvan
    robinvan Member Posts: 1,012
    Thinking of You All
    Boy my heart really goes out to all of you who are in the midst of chemo. I've been through the mill twice and just hearing your stories brings back the memories... and the nausea!

    I relate to what Phil has said. I would just start feeling good... and them back in for more chemo.

    Blessings to you all as you endure another round.

    Peace...

    Rob
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Awwww Mags!
    I was trying to think of something uplifting to pass on to you but the reality is... chemo just plain sucks! No matter how you look at it or how you are feeling. If you are feeling rotten, then you are feeling rotten and you remember that feeling each and every time. If you aren't feeling rotten and you think, "Gee, I think I'm actually feeling ok this time around"... then you are on pins and needles waiting for the crappy feeling to hit you... even if it never does.

    But... let's look at it this way... you are soon going to be finished #4... remember when you were starting #1 again? Thinking of being on #4 was impossible to imagine because you hadn't gotten through #1 yet... so you are now ahead of the game!! And you have 3, soon to be 4 treatments worth of cancer fighting meds in your system, doing the battle they are meant to do! They are beating the cancer into submission... and that's a GOOD thing :)

    I just feel bad that your little escape shed is all covered in snow, making it hard for you to get out to it. That would perk you up just knowing you can have some rest time in your cozy little cottage-garage!! :)

    Huggggggs,

    Cheryl
  • maglets
    maglets Member Posts: 2,576 Member
    thank you
    thank you each and every one of you darlings.

    Kimby is on to something......whoooa I got the day before blues!

    I am up , tubbie timed and ready for show time...9am

    yup that's our reality

    Hugs to all
    Mags
  • tiny one
    tiny one Member Posts: 465 Member
    Git R Done
    One day during my treatments when I didn't want to have the next one and wasn't having a good day. I asked the Counselor at the Cancer Center what if I can't do this anymore. She said then your done. For some reason knowing that I could tell them to stop made me feel better. I had a mediport in and a ileostomy bag and would just want the bag off and the port out. You're not whining. You need a little TLC and deserve to be pampered and spoiled. God bless
  • ron50
    ron50 Member Posts: 1,723 Member
    maglets said:

    thank you
    thank you each and every one of you darlings.

    Kimby is on to something......whoooa I got the day before blues!

    I am up , tubbie timed and ready for show time...9am

    yup that's our reality

    Hugs to all
    Mags

    like a bad dream
    G'day Mags,
    I can so understand your mindset. I spent most of 1998 undergoing chemo. It was a horrible regime of 5Fu via canula in the back of alternate hands each week and every second week it was enhanced by a revolting drug called levamisole ,9 tablets over three days.
    I literally counted the days till end of chemo. Twice my onc suggested that I had probably had enough but I stubbornly chose to see it out.
    Since then I have been cancer free and 5 years ago my surgeon declared me cured.
    This last year my health has been quite bad. I was wrongly diagnosed with a serious kidney disease and hit with very heavy doses of prednisone for nearly nine months.
    The treatment did nothing for the disease I have. Fortunately my more serious kidney disease is being controlled by four blood pressure meds.
    Unfortunately the side effects of the pred was to prompt an auto-immune arthritis attack on nearly every joint in my body.
    Now they have put me on a drug for the arthritis,,,Methotrexate,a cytoxic chemo agent. The pills come with the instructions to wash hands carefully after taking the pills. I take two pills once a week. The two days after the meds I take folic acid(same deal as leucovorin). It is supposed to minimise the nausea,it doesn't. Nor does it stop the tngling tounge and lips or the dry eyes. So far It has not helped the arthritis much but the rheumatologist expects that I will have to take it for the rest of my life.
    I cannot help feeling depressed and wondering what I did in a previous life to deserve this . I hate that feeling of being poisoned ,it is not something anyone can get used to. So you have my deepest sympathy and a big hug. I hope one day soon you can get off chemo and live a sane life. As for me one day soon I hope I get abducted by aliens and they fix all my problems:) Ron.
  • msccolon
    msccolon Member Posts: 1,917 Member
    love and prayers!
    chemo sucks! As you know, this is normal and we SO empathize with you! I agree with the comment about knowing that if I truly couldn't take it anymore I had the right to say ENOUGH! That helped a wee bit, but truly, ATIVAN is what got me through those times! And phone calls to my sister at all hours of the day. She would listen to me cry and complain, cry with me, then we would be over it and onto the next one! I know it was hard for her, especially when she was in Florida. But it was something she could do that helped and she willingly did it! One of many angels along my journey! HUGS from afar and I know you will be feeling "better" soon!
    mary
  • maglets
    maglets Member Posts: 2,576 Member
    ron50 said:

    like a bad dream
    G'day Mags,
    I can so understand your mindset. I spent most of 1998 undergoing chemo. It was a horrible regime of 5Fu via canula in the back of alternate hands each week and every second week it was enhanced by a revolting drug called levamisole ,9 tablets over three days.
    I literally counted the days till end of chemo. Twice my onc suggested that I had probably had enough but I stubbornly chose to see it out.
    Since then I have been cancer free and 5 years ago my surgeon declared me cured.
    This last year my health has been quite bad. I was wrongly diagnosed with a serious kidney disease and hit with very heavy doses of prednisone for nearly nine months.
    The treatment did nothing for the disease I have. Fortunately my more serious kidney disease is being controlled by four blood pressure meds.
    Unfortunately the side effects of the pred was to prompt an auto-immune arthritis attack on nearly every joint in my body.
    Now they have put me on a drug for the arthritis,,,Methotrexate,a cytoxic chemo agent. The pills come with the instructions to wash hands carefully after taking the pills. I take two pills once a week. The two days after the meds I take folic acid(same deal as leucovorin). It is supposed to minimise the nausea,it doesn't. Nor does it stop the tngling tounge and lips or the dry eyes. So far It has not helped the arthritis much but the rheumatologist expects that I will have to take it for the rest of my life.
    I cannot help feeling depressed and wondering what I did in a previous life to deserve this . I hate that feeling of being poisoned ,it is not something anyone can get used to. So you have my deepest sympathy and a big hug. I hope one day soon you can get off chemo and live a sane life. As for me one day soon I hope I get abducted by aliens and they fix all my problems:) Ron.

    g'day ron
    Oh ron you have had a really really rough ride. You just wait .....Scottie might beam you up for a tiny vacation:):) nah stay here. It does feel like being poisoned though doesn't it?
    I was determined this time to use guided imagery and view the chemo as golden elixir, pouring into my body, killing cancer cells. Sometimes the vision works and sometimes I just feel like crap crap of chemo poison:):):)

    you take best care and stay in touch

    Love,
    Mags
  • pcs1453
    pcs1453 Member Posts: 75
    I can relate
    Hey Mags,

    Sounds like we are on the same treatment plan. I felt exactly the same way as you last week after starting round 5. I called a gal I know who went though the same thing last year and I felt a little better after talking to her. But even now, day 10, my finger tips are numb as I type and with the xeloda I never know how I'm going to feel. I guess we should be greatful that by the time summer comes we will be able to have a nice tall glass of ice tea or a big Jumba Juice. I am so sick of drinking warm water. I guess we all need to vent, especially as time, and treatment, drags on. Thank god, April 20th, will be my last infusion, round 6. HALLELUJAH!!
  • maglets
    maglets Member Posts: 2,576 Member
    msccolon said:

    love and prayers!
    chemo sucks! As you know, this is normal and we SO empathize with you! I agree with the comment about knowing that if I truly couldn't take it anymore I had the right to say ENOUGH! That helped a wee bit, but truly, ATIVAN is what got me through those times! And phone calls to my sister at all hours of the day. She would listen to me cry and complain, cry with me, then we would be over it and onto the next one! I know it was hard for her, especially when she was in Florida. But it was something she could do that helped and she willingly did it! One of many angels along my journey! HUGS from afar and I know you will be feeling "better" soon!
    mary

    cutester

    Ok this is for sure!! the cutest baby pic yet.

    Yup chemo sucks....we had a time finding a vein today but we finally got it. I took a couple of tylenol and I think it helped the oxy headache. Get this! no hot water in the onc washroom///just cold water for hand washing in a hospital. Now that makes sense doesn't it?

    I tell you that cold cold water feels so crappy on those oxy fingers....I get neuropathy immediately.:):): guess we can't afford hot water.

    __Day Dreamer__??????? how did 4 girl go with you ??

    two infusions to go.
    Crap the CEA was up to 3.5....that's up for me...can't worry about it...also a pocket of fluid at the last liver re-section site showed up on CT//// see the liver surgeon next week.

    On we go

    thanks all
    mags
  • maglets
    maglets Member Posts: 2,576 Member
    pcs1453 said:

    I can relate
    Hey Mags,

    Sounds like we are on the same treatment plan. I felt exactly the same way as you last week after starting round 5. I called a gal I know who went though the same thing last year and I felt a little better after talking to her. But even now, day 10, my finger tips are numb as I type and with the xeloda I never know how I'm going to feel. I guess we should be greatful that by the time summer comes we will be able to have a nice tall glass of ice tea or a big Jumba Juice. I am so sick of drinking warm water. I guess we all need to vent, especially as time, and treatment, drags on. Thank god, April 20th, will be my last infusion, round 6. HALLELUJAH!!

    oh pcs
    I am so glad you wrote....my fingers hurt to wen i type and I can hardly think of anything to drink....food is good but warm water.....the thought is so uanappealing...I don't even drink soda and I am dreaming of a huge coke filled with ice:))

    How were your blood numbers? obviously good enough to carry on....I really don't want to fall behind and have summer pass in a cloud of oxy. and it's soooo true what you say about xeloda...you never know...I sometimes think this is a great drug and then a I get a phantom ear ache or chest pain or shortness ob breath and the nose that drips endlessly the sore eyes


    April20 ...I am going to mark that on my calendar.....Hallelujah!

    you hang girl, well done 5 down and one to go. Gooooood work

    Mags
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    maglets said:

    oh pcs
    I am so glad you wrote....my fingers hurt to wen i type and I can hardly think of anything to drink....food is good but warm water.....the thought is so uanappealing...I don't even drink soda and I am dreaming of a huge coke filled with ice:))

    How were your blood numbers? obviously good enough to carry on....I really don't want to fall behind and have summer pass in a cloud of oxy. and it's soooo true what you say about xeloda...you never know...I sometimes think this is a great drug and then a I get a phantom ear ache or chest pain or shortness ob breath and the nose that drips endlessly the sore eyes


    April20 ...I am going to mark that on my calendar.....Hallelujah!

    you hang girl, well done 5 down and one to go. Gooooood work

    Mags

    The Cold
    I hated that I really could not eat ice cream. I did anyway but it was little tiny mouthfuls that hurt while I ate them. Talk about addicted to ice cream!
    Hopefully you will be done soon with your treatments.
    -phil