View from Here

Sasu
Sasu Member Posts: 39
in Breast Cancer #1

yep.....back on the old soapbox again.....I may need to explain why I get upset when people come on these boards talking about how they have cancer and even though there are treatments available, and some have proven to be effective, they decided for whatever reason to just not do any of it.  Then name your topic something like I have cancer and decided to do nothing. Or  I have cancer and don't want the inconvenience of maybe getting sick during treatments, so I'm not doing them.  The one that really bothers me is " I hear some of the treatments may make me gain weight, so I choose to do nothing.  

I feel so fortunate to be here during a time when they do have treatments available for some cancers.  

At the same time we have a family member with a cancer they honestly know nothing about.  The attempts at treatment have been unsuccessful.  There is a lot of pain involved.  Treating that has been a nightmare.  Sounds like the amputations may begin again.  

We need to continue fighting this disease and keep pushing to find a cure.  It needs to stop. 

Comments

  • peony
    peony Member Posts: 306 Member
    edited January 2017 #2
    Oh, dear, sweet, Sasu. We all

    Oh, dear, sweet, Sasu. We all walk our own paths down Cancer Road.  For every one who does no treatment, there's some who accept it willingly and gratefully.  My diagnoses came 3 days too late for me to enroll in a clinical trial and believe me, if I had been on time, I would have signed up.  But we can't judge others for their choices and let's hope we're not judged for ours.  I'm just glad that we who want to fight the good fight have be able to do so in good company. Best wishes.

  • camul
    camul Member Posts: 2,537
    #3
    Sometimes, these statements are their way of dealing with

    their diagnosis.  I was offered another chemo and chose not to do it. My reason was after 3 years of weekly che

    not to do it as it was less than 20% chance it could help.  My tumor markers only responded to Arommason after 6years of chemo and blockers, and at this point the blockers stopped working and my markers went from 24 (only time I was stable and it lasted 2 months).  Then started going back up. While on the blocker,  it spread to the brain, then lungs.

    i had people asking Why I was giving up.  I wasn't giving up, my body had worn down and according to both my medical onco and rads onco, my immune system can no longer fight it.  The hardest were people in my support group who said I was the last person they thought would give up!!!!    Really??  I had rads to 8 areas and 4 of those 2x.  I went thru 6 surgeries, blood clots, blockages from the rads, in a wheelchair on and off for  a year and a half of the chemo, bald for 3+ years.

    then rads to the brain and bald spots all over my head (still).  Those who were judging were not the one who has had 15 UTI's now, and Thrush from the antibiotics 3x.  Legs so weak that  that they just give out and I go down. 

    Now I sleep about 80-90% of most days. 

    I don't tell people this, But it does hurt when they judge me bcuz I started Hospice. That was when my tumor markers went over 800, did 10 rounds of radiation and the cancer in my brain continued to grow.  So even though they say part of what is going on, there is most likely more to it.

     The pain is so bad now that even my pain pump is no longer controlling it, I am also on 100mg Fentanyl patches, dilauded for breakthrough, meds to sleep at night and control the continual cramping, not to mention the pain in my head from the tumors.  I got migraines for years and this pain is so different, it is sharp pains that may last 10 minutes or hours and haven't found anything to relieve it completely.  I have no appetite, and when I eat I get stomache pain.

    Yet people still think I am giving up????   Friends and even family members get upset if I don't call them back if I am sleeping when they call.  Sometimes the last thing I am up to is consoling them because they are having a hard time waith me being at the ending stages of this horrendous disease.

    Give people a break here, not everyone is strong enough bough to go Thru all of the side effects,  or have people telling them about this one or that one who did nothing and they are around y are later.  We each have to make decisions Rabat we feel are best for us.  After the first round of chemo in 2002, one onco said I would never get it back and y onco over treated me.  8 years later it was back and Thru me.  Sept 6. 2016 my lungs we're clear, Sept.   28, 2016, I was having an MRI on my brain and asked my onco to check my lungs cuz I started coughing up blood, my lungs were fully consumed,  3 weeks???   

    This was when I started hospice and getting judged.

    None of the 8 chmeow were easy, but the pain is the worst and we need to give each other support. How we chose to be treated is our choice, and all we can do is hope they are making the best decisions for them.

    Hugs and prayers to everyone!

    Carol

     

     

  • Sasu
    Sasu Member Posts: 39
    edited January 2017 #4
    Sooooo frustrating.......

    Thank you for your reply, Peony.  I do understand everyone has their own path to travel.  I also understand there comes a time when treatment is not  effective.  I understand people who had treatment, but will not have it again. It's just not in my nature to do nothing when there are options available.  I have buried too many friends because of this disease. There will come that time when I, too, will say " no more." I am not there yet.    

    Hugs

  • button2
    button2 Member Posts: 421
    edited January 2017 #5
    Money grubbers

    I don't get angry with people who make a decision for themselves, but I hate the fake chummy posts like "Here's how I beat cancer without conventional treatments..." and then go on to subtly suggest some expensive snake oil! They even add links sometimes!

  • Sasu
    Sasu Member Posts: 39
    edited January 2017 #6

    Carol, please believe me when I say you of all people have not given up. You have tried.  You have fought this battle longer and harder than most,and with strength and dignity. Anyone who doesn't understand the decision you have made perhaps never will.  

    The people who don't try at all are those I don't understand.  Yes, there are those who have no treatment available to them. Trust me, I know.  Once in a while I get on the old soapbox and speak my mind.  It is usually my frustration coming out, and it is the way I handle things. It's nice to know once in a while someone listens.  

    Gentle hugs and peaceful journeys to you.

     

  • Sasu
    Sasu Member Posts: 39
    #7
    Snake oil

    Yes, button2, snake oil!  The most amazing are those who were not told they have cancer by doctors, but by the very people selling them the miracle cure.  After spending thousands on unconventional treatments, they have been cured.  

    They are good at monitoring this site to shut those posters out.  people who have not been diagnosed with cancer have no idea all the variables.....wouldn't it have been nice to just smoke some pot and have it all go away like some claim?

  • Apaugh
    Apaugh Member Posts: 850 Member
    edited January 2017 #8
    Armchair quarterbacks go away....

    I have been around alot of people who have suffered with cancer.  I have watched people beat it and I have watched people die from it.  Many of those were family members.  They all made their own choices and I always respected their choice no matter what it was, no matter what I personally thought.  Many times, I kept my big mouth shut.  Who was I to decide? 

    Now here I am with cancer and I have come across many people who say make the dumbest remarks to me.  I dont cut them a break.  I tell them they are not me so they dont know.  I find it is usually the ones who have never had it that want to tell you what to do. 

    Until you are faced with making these hard choices, stop quarterbacking my life.  You DONT know. 

    Peace

  • button2
    button2 Member Posts: 421
    #9
    Lemons

    I had a good friend tell me to treat my cancer with lemons. I still can't believe it! Lemons? lol. I wonder if he would risk it himself!

  • button2
    button2 Member Posts: 421
    #10
    camul said:

    Sometimes, these statements are their way of dealing with

    their diagnosis.  I was offered another chemo and chose not to do it. My reason was after 3 years of weekly che

    not to do it as it was less than 20% chance it could help.  My tumor markers only responded to Arommason after 6years of chemo and blockers, and at this point the blockers stopped working and my markers went from 24 (only time I was stable and it lasted 2 months).  Then started going back up. While on the blocker,  it spread to the brain, then lungs.

    i had people asking Why I was giving up.  I wasn't giving up, my body had worn down and according to both my medical onco and rads onco, my immune system can no longer fight it.  The hardest were people in my support group who said I was the last person they thought would give up!!!!    Really??  I had rads to 8 areas and 4 of those 2x.  I went thru 6 surgeries, blood clots, blockages from the rads, in a wheelchair on and off for  a year and a half of the chemo, bald for 3+ years.

    then rads to the brain and bald spots all over my head (still).  Those who were judging were not the one who has had 15 UTI's now, and Thrush from the antibiotics 3x.  Legs so weak that  that they just give out and I go down. 

    Now I sleep about 80-90% of most days. 

    I don't tell people this, But it does hurt when they judge me bcuz I started Hospice. That was when my tumor markers went over 800, did 10 rounds of radiation and the cancer in my brain continued to grow.  So even though they say part of what is going on, there is most likely more to it.

     The pain is so bad now that even my pain pump is no longer controlling it, I am also on 100mg Fentanyl patches, dilauded for breakthrough, meds to sleep at night and control the continual cramping, not to mention the pain in my head from the tumors.  I got migraines for years and this pain is so different, it is sharp pains that may last 10 minutes or hours and haven't found anything to relieve it completely.  I have no appetite, and when I eat I get stomache pain.

    Yet people still think I am giving up????   Friends and even family members get upset if I don't call them back if I am sleeping when they call.  Sometimes the last thing I am up to is consoling them because they are having a hard time waith me being at the ending stages of this horrendous disease.

    Give people a break here, not everyone is strong enough bough to go Thru all of the side effects,  or have people telling them about this one or that one who did nothing and they are around y are later.  We each have to make decisions Rabat we feel are best for us.  After the first round of chemo in 2002, one onco said I would never get it back and y onco over treated me.  8 years later it was back and Thru me.  Sept 6. 2016 my lungs we're clear, Sept.   28, 2016, I was having an MRI on my brain and asked my onco to check my lungs cuz I started coughing up blood, my lungs were fully consumed,  3 weeks???   

    This was when I started hospice and getting judged.

    None of the 8 chmeow were easy, but the pain is the worst and we need to give each other support. How we chose to be treated is our choice, and all we can do is hope they are making the best decisions for them.

    Hugs and prayers to everyone!

    Carol

     

     

    Carol

    I'm glad you are keeping us up to date about your terrible struggle. I just want to tell you to completely ignore people saying you are giving up. They may mean well, but they have no clue. Nobody has fought harder than you. I think people don't want to believe they could die and they live in some kind of "this would never happen to me" kind of world. On another note, do you have someone familiar with this site who could tell us how you are doing when you no longer feel able to type? I know I, and I'm sure many other ladies want to support you till the very end. You are in my prayers, amazing warrior lady! Hugs, Anna

  • Jean 0609
    Jean 0609 Member Posts: 2,462
    edited January 2017 #11
    camul said:

    Sometimes, these statements are their way of dealing with

    their diagnosis.  I was offered another chemo and chose not to do it. My reason was after 3 years of weekly che

    not to do it as it was less than 20% chance it could help.  My tumor markers only responded to Arommason after 6years of chemo and blockers, and at this point the blockers stopped working and my markers went from 24 (only time I was stable and it lasted 2 months).  Then started going back up. While on the blocker,  it spread to the brain, then lungs.

    i had people asking Why I was giving up.  I wasn't giving up, my body had worn down and according to both my medical onco and rads onco, my immune system can no longer fight it.  The hardest were people in my support group who said I was the last person they thought would give up!!!!    Really??  I had rads to 8 areas and 4 of those 2x.  I went thru 6 surgeries, blood clots, blockages from the rads, in a wheelchair on and off for  a year and a half of the chemo, bald for 3+ years.

    then rads to the brain and bald spots all over my head (still).  Those who were judging were not the one who has had 15 UTI's now, and Thrush from the antibiotics 3x.  Legs so weak that  that they just give out and I go down. 

    Now I sleep about 80-90% of most days. 

    I don't tell people this, But it does hurt when they judge me bcuz I started Hospice. That was when my tumor markers went over 800, did 10 rounds of radiation and the cancer in my brain continued to grow.  So even though they say part of what is going on, there is most likely more to it.

     The pain is so bad now that even my pain pump is no longer controlling it, I am also on 100mg Fentanyl patches, dilauded for breakthrough, meds to sleep at night and control the continual cramping, not to mention the pain in my head from the tumors.  I got migraines for years and this pain is so different, it is sharp pains that may last 10 minutes or hours and haven't found anything to relieve it completely.  I have no appetite, and when I eat I get stomache pain.

    Yet people still think I am giving up????   Friends and even family members get upset if I don't call them back if I am sleeping when they call.  Sometimes the last thing I am up to is consoling them because they are having a hard time waith me being at the ending stages of this horrendous disease.

    Give people a break here, not everyone is strong enough bough to go Thru all of the side effects,  or have people telling them about this one or that one who did nothing and they are around y are later.  We each have to make decisions Rabat we feel are best for us.  After the first round of chemo in 2002, one onco said I would never get it back and y onco over treated me.  8 years later it was back and Thru me.  Sept 6. 2016 my lungs we're clear, Sept.   28, 2016, I was having an MRI on my brain and asked my onco to check my lungs cuz I started coughing up blood, my lungs were fully consumed,  3 weeks???   

    This was when I started hospice and getting judged.

    None of the 8 chmeow were easy, but the pain is the worst and we need to give each other support. How we chose to be treated is our choice, and all we can do is hope they are making the best decisions for them.

    Hugs and prayers to everyone!

    Carol

     

     

    Love you Carol

    All of us here know you are not a quitter.  You are in my thoughts and prayers daily.

    xoxo

    Jean

     

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