What next?

ppm20wife
ppm20wife Member Posts: 44
edited March 2014 in Caregivers #1
It looks like my dh's surgery is going to be pushed back ANOTHER week - what the heck? Does anyone out there understand he has cancer? He needs to have that surgery done to remove the darn tumor??? I guess the Lynch Syndrome Test might not be back in time and they need it to decide how the surgery will be...jeez put a rush on the darn thing....it's already been 6 weeks since his dx (1 week since the test) and I don't care what anybody says one week longer is too long to have a cancerous tumor in your body....I am just so frustrated I could scream but all I have done is burst into tears...I want my dh to get better as soon as he can...I am just so scared - it's pitiful ...i can't imagine what dh feels like or in fact anyone that has cancer and has been told they have to wait even longer to deal with it. So now instead of August 5th it looks like Aug 12th...I feel so helpless...drs. are looking into ways to get around this but I have this sinking feeling it ain't gonna help...I hardly sleep at night - at least with the surgery over we will know exactly what we are fighting - now it is just sit and pray that the tumor is not growing or getting any stronger....*sigh* and to think this is just the beginning

Comments

  • SonSon
    SonSon Member Posts: 174
    #2
    shop around
    Health care in America is, sadly, another consumer item and doctor's and hospitals are aware of this.
    See if there is another hospital that the doctor practices at and ask if surgery can be done there (he may be struggling with surgical scheduling at that hospital). Or, if your doctor is not also the surgeon, ask if another surgeon can do it.
    Call around different hospitals and doctors. Tell them the basic history of your husband and his need for surgery, it IS urgent and you want to get the soonest possible surgery appointment possible.
    And don't worry about being a "pest" - sometimes you just have to be a pest.
    This is my suggestion - I hope you find a solution.
    Fatima
  • Hestia
    Hestia Member Posts: 26
    #3
    ppm20wife
    I too went thru delayed treatment. It was three weeks and no treatment had even been discussed with me. A bone marrow needed to be done, the hospital where the procedure was to be done couldn't (or wouldn't) schedule. Found out from a friend that worked there that the doctor that did procedure hated doing them and usually found an excuse to delay. Finally I was sent to another hospital altogether for bone marrow. At that point I was getting feisty about "What is going on," When is treatment starting?" I began looking for another onc and found one from recommendations, after having radiation from first doc I switched docs and started chemo.
    I suggest that you google Lynch Syndrome Test; ask your husband's doctor why Lynch Syndrome Test is needed before surgery; what does it tell him. Ask, ask, ask, drive them nuts with questions. Let them (the medical staff) know you are keeping up on treatment, meds, etc. Get in touch with American Cancer Society, ask them questions, they are great resource, esp in beginning. Write everything down from doc visits; if you or husband are not good note takers ask someone else to go with you.

    As of 4/22/09 I have been in remission from Non-Hogkinds Lymphoma. Next PET scan is 8/7, next onc visit 8/12. Have port in that will need to stay in for about a year (or so I am told.) And please don't worry about crying, I cried the first four months, talked thru tears, told med staff to ignore them, pretend they weren't there and just get on with it.

    Actually, I am curious what dh stands for. I am guessing dear husband, am I way off on that? Doesn't matter, it's obviously someone you love. Someone that you will take care of and be with on this journey.
  • ppm20wife
    ppm20wife Member Posts: 44
    #4
    Hestia said:

    ppm20wife
    I too went thru delayed treatment. It was three weeks and no treatment had even been discussed with me. A bone marrow needed to be done, the hospital where the procedure was to be done couldn't (or wouldn't) schedule. Found out from a friend that worked there that the doctor that did procedure hated doing them and usually found an excuse to delay. Finally I was sent to another hospital altogether for bone marrow. At that point I was getting feisty about "What is going on," When is treatment starting?" I began looking for another onc and found one from recommendations, after having radiation from first doc I switched docs and started chemo.
    I suggest that you google Lynch Syndrome Test; ask your husband's doctor why Lynch Syndrome Test is needed before surgery; what does it tell him. Ask, ask, ask, drive them nuts with questions. Let them (the medical staff) know you are keeping up on treatment, meds, etc. Get in touch with American Cancer Society, ask them questions, they are great resource, esp in beginning. Write everything down from doc visits; if you or husband are not good note takers ask someone else to go with you.

    As of 4/22/09 I have been in remission from Non-Hogkinds Lymphoma. Next PET scan is 8/7, next onc visit 8/12. Have port in that will need to stay in for about a year (or so I am told.) And please don't worry about crying, I cried the first four months, talked thru tears, told med staff to ignore them, pretend they weren't there and just get on with it.

    Actually, I am curious what dh stands for. I am guessing dear husband, am I way off on that? Doesn't matter, it's obviously someone you love. Someone that you will take care of and be with on this journey.

    Finally some answers!
    Well surgery is still on August 5th - insurance company was delaying it but after the surgeon and I both blew up at them magically everything is a "go"~! DH to me means darling husband! (most of the time! LOL)
  • terato
    terato Member Posts: 375
    #5
    ppm20wife said:

    Finally some answers!
    Well surgery is still on August 5th - insurance company was delaying it but after the surgeon and I both blew up at them magically everything is a "go"~! DH to me means darling husband! (most of the time! LOL)

    Another powerful argument for "getting emotional"!
    ppm,

    I am very happy for you and your husband that the original date of his surgery will remain, even though August 12 is my birthday, my 58th, actually, 27 of them after I concluded treatments. Hopefully, if the President's health insurance reforms ever make it through our lobbyist plagued legislature, insurance companies will no longer be permitted to delay or deny essential surgeries, like your husband's.

    Love and Courage!

    Rick
  • Unknown
    Unknown
    #6
    terato said:

    Another powerful argument for "getting emotional"!
    ppm,

    I am very happy for you and your husband that the original date of his surgery will remain, even though August 12 is my birthday, my 58th, actually, 27 of them after I concluded treatments. Hopefully, if the President's health insurance reforms ever make it through our lobbyist plagued legislature, insurance companies will no longer be permitted to delay or deny essential surgeries, like your husband's.

    Love and Courage!

    Rick

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