fluteplayer

Activity

  • Dozenelk
    Flutepayer: While there are some people including churches, their pastors & congregations, that believe illness is the result of some sin. That is NOT right. Please take a look at Job. His friends told him the same thing. And they were so wrong. I was told the same thing by a well meaning friend who truly believed that. It was so judgmental and discouraging. She had a heart attack and died within the year. I'm still plugging along with my illness and will do so the rest of my life. I know it stings a lot when someone says that to you! I'm glad you wrote about it so we can all encourage you instead of judge you. I pray that God will remove the sting of those words from you. GOD IS ONLY OUT TO GET YOU INTO HEAVEN!!!!!!!!!! The bad in this world does NOT come from God. So look up, my friend. Our help comes from above. If you wish to talk with me further, let me know and I'll send you my email address.
    August 2017
  • blondie
    Show the information to your doctor and have he/she explain his/her lack of professionalism. He/she denying proper care cost you your life. Get legal advice and see what can be done.
    June 2013
  • Suzitozer
    Hi, I seem to be on a similar journey as you. I'd love to talk.
    October 2018
  • GregP_WN
    Good afternoon, just checking to see how you're doing.
    March 2018
  • Lola27
    If you aren’t taking the shots, what are you taking with Ibrance? It’s not a solo drug.
    April 2018
  • Gabba
    So sorry to learn you had to be hospitalized but it sounds as if you are where you need to be...will keep you in my prayers.
    August 2018
  • Lola27
    I hope it works! I’m sorry about your daughter!
    January 2018
  • Lola27
    Why stay on a med that isn’t working?
    January 2018
  • BoiseB
    Flute player, all my life my mother told me that God was punishing me or would sometime in the near future punish me. I sort of view my cancer as a blessing because it caused me to get right with the Lord. I know one thing God has been with me through the entire journey. Last year I had two life threatening situations. I have been lucky that the three pastors that counseled me during these 7 1/2 years were truly men of God. When my Pastor came in to pray over me before emergency surgery I felt peace and healing.
    September 2017
  • BoiseB
    Last night I woke up in the middle of the night . I said prayers for you and for your pastor
    August 2017
  • ChildOfGod4570
    Fluteplayer, I am so so so so sorry to hear of all you are going through and the complications and expenses you are now facing. :( Please know that we are here for you, and God surely is with you and *not* against you. Whenever you feel low, please remember the Footprints in the Sand poem:
    Footprints in the Sand
    One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.
    In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.
    This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,
    “You promised me Lord,
    that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?”
    The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”
    I bought a keyfob with the last line of the poem on one side and footprints on the other. I removed the keyring and affixed the fob to a chain and wear it as a medallion now.
    I hope I have been able to encourage and make you feel better. :) HUGS and God bless.
    August 2017
  • MoveIt2012
    Just thinking of you and wanted to say hi and hope you are doing well.
    September 2017
  • meyati
    Dear Fluteplayer--please forgive me about your post. I hope this didn't scare you away from Whatnext. I want to assure you that all of the Christians are praying for you. We really love you with a double bond--the bond of Christ-and the bond of cancer.

    The non-Christians are sending you good vibes or praying their own way.
    August 2017
  • Carool
    Hi, fluteplayer. I hope you found solace in some of the many comments to your post about your pastor. I'm just sending you hugs and best wishes that you get good news from your new oncologist.
    August 2017
  • BarbarainBham
    IMPORTANT: If you go thru the process of appealing and your insurance won't pay, be sure to call the American Cancer Society 800 number and ask for how to get financial help. There are many groups that assist underinsured patients.

    After that you and/or your doctor can look for Clinical Trials that provide chemo.
    February 2016
  • lilymadeline
    Hi Fluteplayer, I am so sorry that you have disc problems as well as bone cancers. :-( no wonder you are in so much pain! Are you seeing an orthopedic oncologist ? I always go to more doctors and get other opinions when I am having problems and I have found that I need to be very pushy sometimes with my doctors as well. I am still on Xeloda chemo pills, hormone blockers, and morphine. The pain has gotten worse in my bones lately so I am thinking of doing more radiation to shrink the bone lesions to help with the pain. Or maybe surgery? I am seeing my orthopedic oncologist surgeon Dr. Brian on Tuesday, I saw my regular oncologist today and another oncologist yesterday, but my bone oncologist takes charge of my bone problems! Although he may send me to the radiation oncologist....the doctors keep me awfully busy, sometimes it feels like I live at the hospital! Right now I am feeling tremendous pain in my pelvis and hip area, it feels like it is burning up...that is from the bone cancers. I hate it sometimes, don't you? :-(
    November 2013
  • lilymadeline
    got your message, no worries! sometimes I get an email when someone writes on my wall, but I have noticed that they don't always send emails...so I miss things posted on my wall as well! take care! xoxoxoxoxoxoxo
    November 2013
  • geekling
    Hi; Read your statements regarding radiation follow up and, sadly, there are so many, you aren't alone. I see by your wall that we communicated once before. I keep by my first statement but now ask that you look into "graviola" also known as guanabana in the frozen section at a food market. It requires a protocol to help. Please look into it.

    I maintain that we each need to look for medicine at the end of a fork because we go through so much irritation daily and are constantly inflamed. I (try to) make sure I each a lot more of greens than one might imagine if they'd not heard of the raw & living food movement. There are folks who need to juicer because it is the only way they can get enough nutrients into their system. Others do smoothies because they cant manage the chewing. A few balance properly, freshly eating and drinking through out the day.

    Best wishes for you to fully recover your health as soon as possible.
    November 2013
  • MMarie
    Thank you for your honesty on the "Personal Growth" post. I appreciate your realness.
    October 2013
  • lilymadeline
    Hello again! by the way, I just reread my post about Xgeva and believe me I was not exaggerating at bit about the horrible SE, I really felt like I was being stabbed over and over again, it was the worse possible neuropathy and it went away when I got off that drug. Are you still on it? If the pain is from the Xgeva morphine might not help enough ( but it does help with bone cancer ) at least that was my experience. Good luck and blessings! and please let me know what happens! I am still alive and kicking off the Xgeva! xoxoxoxo
    October 2013
  • lilymadeline
    Hi Flueplayer,
    Thanks for your message, and I think I know how you feel but please hang in there because you never know what is around the corner.
    I'm on chemo pills Xeloda, and Arimidex to control the cancer. And I'm on slow acting Morphine, short acting Dilauid for break through pain, and Lyrica to control the pain and neuropathy. And also a bunch of other drugs for other SE and who knows what anymore! ;-) I also take Aleve to help with the arthritis symptoms from the Arimidex. Do they have you on real pain meds? If not I would insist on getting some narcotics. I had to try over a dozen until I found the right ones that worked for me and didn't make me nauseous or overly itchy! I couldn't handle most of the narcotics because of the SE. However I do take anti-nausea drugs now but mostly because of the Xeloda. Awhile back I did intravenous chemos as well, and also radiation. Xgeva is supposed to be a great drug, I just couldn't handle it. It is weird but everybody is different and we all get different SE sometimes, you just have to keep trying until you find what works....and then you still could build up a tolerance for it...or sensitivity to a drug. Just the way it, cancer care seems to be constantly in motion...
    I drive my doctors crazy because I am always looking for a better medication, but they can get lazy and just want to stick with the same drugs that they are used to prescribing so I guess I am keeping them on their toes. ;-) I'm sure that I drove my psychiatrist nuts trying all these different pain meds! But they really are all a little different....each formula is unique and has different additives...
    Take care and let me know what happens! xoxoxoxoa
    October 2013
  • zoe
    Thanks for your reply . 20 years,that's amazing. I'm so sorry you are going through all this,I'll keep you in my prayers.
    June 2013
  • MillieS
    Hi, I feel your pain and understand your anger. In my case, it was a radiologist or should I say several of them that thought the small lump in my breast was too insignificant to mention. Even after it doubled in size! It was there four years before one of them thought to mention it. I too am now stage IV. Mets in liver and bone. I turn 70 in August but longivity runs in my family. I truly expected to live close to 90. See my grands grow up. Maybe see a great grand child or two.i have periods of anger . My thoughts being no matter how insignificant the lump was I should have been told from the onset and been part of the decision since after all MY life !

    That said. Have yourself a good cry, punch some pillows, shake your fist at the sky and scream ,stomp your feet. Then after you have exhausted yourself, sit down ,take a deep breath, and decide how you are going to handle this thing. The first thing, I would suggest is a new dr. You should have a two year window if you want to take legal action . Wait until the anger passes to make that decision. Look at alternative approaches , new drs,. Get on the Internet . Be proactive in your own care. There is a web site called
    inspire.com that has a lot of good info on it.

    Like I have read many times on this site... You do not have an expiration date stamped on you. Don't accept the idea that you do! Be strong . Fight for your right to live . Please do .you deserve this right and so do the people in your life that love you.

    Stand strong ,Sister, and fight. We stand with you. That's why we are on this site. To love one another , to hold each others hand in time of despair , to give encouragement when needed. We are here . We love you . The world needs you here. It would be a sadder place without you. Fight! Many hugs coming your way!!!
    June 2013
  • GregP_WN
    Hello and welcome, we are glad you found us.Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

    https://www.whatnext.com/conditions/cancer/breast-cancer

    There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

    You may also find our "Beginner's Guide To Cancer" page helpful Click Here for that=> http://bit.ly/10BQKCi

    Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

    Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

    Follow Us on Twitter Click Here =>http://bit.ly/XExkce
    Find Us on Facebook Click Here =>http://on.fb.me/zjBAPl

    GregP
    3X Survivor
    Team WhatNext Community Mgr.
    June 2013
  • DaveWaz

    Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

    Wishing you the best.

    David
    Founder, WhatNexter
    June 2013