UPDATED "put up or shut up" I have made the core argument clearer I hope SUGAR

13»

Comments

  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #42
    our health
    Ok, so I reactivated my gym membership yesterday and went for 45 minutes. I did some thinking yesterday about all I went through this last year and that I wasn't going to let it be for nothing and just hope the cancer doesn't come back. I did my treatment, so now it's time to continue "treatment"... care for my body nutritionally, physically, emotionally....and I will appreciate any advice, knowledge, suggestions....anything as this will be different way of living to me. In the past I did get my exercise, and I did eat pretty healthy, but not with the motive I have now. So please throw your knowledge, links, studies, books, suggestions my way :):)

    peacelove&happiness to you all, gail
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #43
    pete43lost_at_sea said:

    thanks blake
    I assumed 1/3 at initial DX were stage 4.
    so in the usa 150,000 new cases would be split by exercise benefit.

    ie 100,000 stage 1-3 and then 50 stage 4.

    even if the ratios reversed that 50,000 stage 1-3 so thats 25,000 lives saved.

    only 500 lives saved a week in the USA, we are not even talking UK, Canada, New Zealand or Australia.

    I think CSN should tackle the lifestyle exercise issue head on. I think most people after they start caring for their bodies by exercise move to caring for themselves with a healthy diet.

    My issue is that our doctors are not willing to tackle lifestyle issues. As far as I understand the facts, I don't have an option, I want to live.

    Even if I get stuck with a recurrance I'll be the fitest and strongest of any patient, so they can then hammer me with whatever radiation and chemo is necessary to survive. Every single day I am getting healthier and stronger, if the crc comes back then at least I am not the overweight slob I used to be.

    worst case my strength and fitness might just buy me another 6 months with the family, best case a lifetime.

    pete

    My point is
    that dx is not a death sentence.

    "I assumed 1/3 at initial DX were stage 4.
    so in the usa 150,000 new cases would be split by exercise benefit.

    ie 100,000 stage 1-3 and then 50 stage 4."

    Again, not every dx ends in death, actually, for stage 1-3 the odds can be pretty good, and even stage 4 is survivable.

    Btw, your numbers are equal to the expected deaths from CRC in 2011, not the number of diagnosed cases.
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #44
    "Is this to much for CSN ? [ the concept of patient being assertive in the medical system]"

    CSN is about the patient being assertive. This is a place where we can raise questions about our doctors decisions, and seek advice on what questions to ask our doctors.

    Consider this, there are about 200 different types of cancer. If you think of cancer as fruit, and fruit is as different as apples, bananas and cucumbers, then you begin to understand that the various types of cancer can be as different as those three fruits. CSN has forums for about 23 direct cancers, and a couple of forums that cover multiple types, like the childrens cancer forum, or the other rare cancers forum.

    The review we are discussing here shows a survival benefit for only three (Breast, Colon and Prostate), though it does discuss quality of life issues for several others. It also has a full page of warnings about circumstances where physical activity may not be appropriate.

    "I think CSN should tackle the lifestyle exercise issue head on."

    This is the beauty of CSN: It is about what you think because YOU are CSN! Your walking thread has been on the front page since you started it, and this message has 41 responses. Not everyone who reads a thread responds, Colon Talk shows both the number of responses and the number of times a thread has been viewed, and there is one near the top of their page right now with eight responses and 350 views!

    If you want the owners of CSN to be proactive, well, you need to go to the mother site: cancer.org (The American Cancer Society). You will find they agree with you, and even have programs to get employers involved in increasing physical activity.

    "Who wants to bet if they print it and post it in the office ? [will my doctors support my idea]"

    The source document is 15 pages long, a bit much for the average bulletin board. The other issue is that many (possibly most) Oncologist offices do not have a bulletin board.

    "does anyone think emailing this to your doctor is to pushy ? [no one answered this so far]"

    Any way of sharing the source document with your doctor is a good one. Consider though that your doctor, like many professionals, recieves a signifigant amount of email, and it is likely that he will never read the review he gets from a professional medical journal, let alone the one he gets from a patient. (I will share a couple of ways to effectively share with your doctor in a bit)

    "maybe we should just print it ourselves, laminate it and then go and post in the doctors
    offices our selves. Oh that way to militant."

    Not too militant, if there is a place for you to do this. If you just pin something to a random wall I expect it will be taken down as soon as you leave. In the end, this is not the most effective way of spreading a message.

    So, how to raise our doctors awareness, and maybe get them involved with their other patients who could benefit? Here is a short list of things that will work:





    1. Share the article and/or source document with your physician on your next visit (source documents are always better than articles, even if it is just an abstract)
    2. Based on this review, request a prescription for physical therapy (by writing a script, your doctor is taking an active role, and it is something he can now offer the next patient). 
    3. Request script for a treadmill, gym membership or other appropriate exercise device, then use the source document to request that your insurance company pay for it
    4. Share the article with your infusion nurse, so she can share it with others who may benefit
    5. Start a walking thread in your favorite cancer forum.   Who knows who might be influenced




    I posted it earlier, but here is the link for the source document again:


    The importance of physical activity for people living with and beyond cancer: A concise evidence review

    This is about as easy to read as they come, and perfect to share with your medical team.

    Btw, if your treatment has ended and you are in remission it is not too late to request script. Based on this review you should be eligible for PT and you can make a case that your insurance company should fund your Family Fitness membership.

    Good luck, and good health to all.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #45
    herdizziness said:

    Okay
    Your saying Onc's should be recommending people get out there and exercise etc? Helping shake the cancer by physical movement? Can't complain there, you are right, they don't really suggest that you do that. I think because a lot of them are your first life line to your cancer and they figure the last thing you want to hear is go exercise, they probably figure you want to hear more about your chemo's, surgeries and staging at that point, however I think that 6 months in they might suggest it by then or even sooner. It's a good idea Pete, when I think about it, my onc, great as he might be, hasn't recommended exercise, and I agree with you that one should be doing it.
    Winter Marie

    thanks winter
    dear winter,

    we had similar onc talks without the exercise message.

    my great onc said radio/chemo then surgery then chemo etc etc we know my treatment plan . same as most stage 1-3.

    the onc should give the walking message in the first crc consult. here is a script for 10,000,000 steps. over 6 years. think of all the walking shoes that means.

    what do you think about livingshoes.com

    if they told me to climb everest to live i'd try.

    now all the onc has to say go for a walk, here is your complentary pedometer.

    mine cost me $60, its really good. lets see how active you are, where is a your diary with your walks.

    oh and walking during this treatment will be good for your mental health each and every day you do it.

    winter, this walking message is big, its my legacy, its something csn can achieve together.

    like blake said we are csn.

    even if we succumb to crc, can you not feel the immense satisfaction deep in your heart that we got this message to each and every oncologist who cares for us on this board.

    that still my dream that my friends here will care enough to tell/ask/share/BEG there onc and colorectal surgeon to BEG/IMPLORE crc patient.

    think of it ? go back to the first onc meeting. you want to live, what can you do.
    their are tests, scan etc etc. but the onc says, we can get you started on the latest life saving research.

    he hands you a pedometer and a voucher for a good pair of red walking shoes, the same colour as the blood in the loo. when you see the shoes your reminded about crc.

    he writes the script walk 6km straight after this consult and every day for 6 years.
    he then arranges scans, test, and chemos.

    this is the new treatment plan for onc. it started today!!!!

    we can achieve this together, the number of lives to be saved brings tears to my eyes.

    goddamit all those families with fathers and mothers rather then memories.

    would kerry, rodger, mary, john have made if they had the walking prescription at the start. who knows, but i hope.

    this is just to important, but i need help, the message is not getting the publicity it deserves.

    hugs,
    pete
    ps its not the dex anymore
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #46
    plh4gail said:

    our health
    Ok, so I reactivated my gym membership yesterday and went for 45 minutes. I did some thinking yesterday about all I went through this last year and that I wasn't going to let it be for nothing and just hope the cancer doesn't come back. I did my treatment, so now it's time to continue "treatment"... care for my body nutritionally, physically, emotionally....and I will appreciate any advice, knowledge, suggestions....anything as this will be different way of living to me. In the past I did get my exercise, and I did eat pretty healthy, but not with the motive I have now. So please throw your knowledge, links, studies, books, suggestions my way :):)

    peacelove&happiness to you all, gail

    dear gail
    its only 53% but i hope we are still here posting in another 10,000,000 steps.
    that about 6 years. see blakes sweet exerise post.

    love,
    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #47
    Buckwirth said:

    "Is this to much for CSN ? [ the concept of patient being assertive in the medical system]"



    CSN is about the patient being assertive. This is a place where we can raise questions about our doctors decisions, and seek advice on what questions to ask our doctors.

    Consider this, there are about 200 different types of cancer. If you think of cancer as fruit, and fruit is as different as apples, bananas and cucumbers, then you begin to understand that the various types of cancer can be as different as those three fruits. CSN has forums for about 23 direct cancers, and a couple of forums that cover multiple types, like the childrens cancer forum, or the other rare cancers forum.

    The review we are discussing here shows a survival benefit for only three (Breast, Colon and Prostate), though it does discuss quality of life issues for several others. It also has a full page of warnings about circumstances where physical activity may not be appropriate.

    "I think CSN should tackle the lifestyle exercise issue head on."

    This is the beauty of CSN: It is about what you think because YOU are CSN! Your walking thread has been on the front page since you started it, and this message has 41 responses. Not everyone who reads a thread responds, Colon Talk shows both the number of responses and the number of times a thread has been viewed, and there is one near the top of their page right now with eight responses and 350 views!

    If you want the owners of CSN to be proactive, well, you need to go to the mother site: cancer.org (The American Cancer Society). You will find they agree with you, and even have programs to get employers involved in increasing physical activity.

    "Who wants to bet if they print it and post it in the office ? [will my doctors support my idea]"

    The source document is 15 pages long, a bit much for the average bulletin board. The other issue is that many (possibly most) Oncologist offices do not have a bulletin board.

    "does anyone think emailing this to your doctor is to pushy ? [no one answered this so far]"

    Any way of sharing the source document with your doctor is a good one. Consider though that your doctor, like many professionals, recieves a signifigant amount of email, and it is likely that he will never read the review he gets from a professional medical journal, let alone the one he gets from a patient. (I will share a couple of ways to effectively share with your doctor in a bit)

    "maybe we should just print it ourselves, laminate it and then go and post in the doctors
    offices our selves. Oh that way to militant."

    Not too militant, if there is a place for you to do this. If you just pin something to a random wall I expect it will be taken down as soon as you leave. In the end, this is not the most effective way of spreading a message.

    So, how to raise our doctors awareness, and maybe get them involved with their other patients who could benefit? Here is a short list of things that will work:





    1. Share the article and/or source document with your physician on your next visit (source documents are always better than articles, even if it is just an abstract)
    2. Based on this review, request a prescription for physical therapy (by writing a script, your doctor is taking an active role, and it is something he can now offer the next patient). 
    3. Request script for a treadmill, gym membership or other appropriate exercise device, then use the source document to request that your insurance company pay for it
    4. Share the article with your infusion nurse, so she can share it with others who may benefit
    5. Start a walking thread in your favorite cancer forum.   Who knows who might be influenced




    I posted it earlier, but here is the link for the source document again:


    The importance of physical activity for people living with and beyond cancer: A concise evidence review

    This is about as easy to read as they come, and perfect to share with your medical team.

    Btw, if your treatment has ended and you are in remission it is not too late to request script. Based on this review you should be eligible for PT and you can make a case that your insurance company should fund your Family Fitness membership.

    Good luck, and good health to all.
    thank you blake
    dear blake,

    what we have in common far exceeds our differences ? i think and hope
    my focus is walking, lets together unleash the power of csn.

    we are not cancer victims waiting to die, we are cancer warriors living today.

    could you tell that the walking post has gotten me of my couch and moving. often pepe has pushed and motivated me. and now here we are. just too many dieing from crc and not enough walking.

    gail, point is`great, we go thorough a year of hell. oh hello and then we don't walk.

    its like asking to join the stage4 club. i am trying to decline the invitation.
    i don't want to get that letter in the mail.

    i agree with you and thank you again for the time and effort and care in your answers.
    i will follow the key points.

    my health insurer HCF has been great, i will post the email to them. i will ask my onc for physical therapy.

    the issue here is, we got the power of the people. a small and expensive / costly group of health consumers. this battle is easy, and i could see obama walking around the whitehouse in a pair of red shoes. i can see it.

    i am on the i survived us tv show, if i get t he opportunity i will tell this message.

    of course if we get this rolling. if anyone does something positive to get the message out share it here.

    yes only 3 cancer types, but they cover a large number of patients.


    hugs,
    pete

Discussion Boards