Discussion Board Forums General Discussion Mayo Clinic visit…..a big disappointment

Viewing 15 posts - 1 through 15 (of 24 total)
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  • #44255
    jimraven79
    Member

    Linda,

    Sorry to hear that your visit was a bust. But it sounds like you’re determined to keep finding alternatives and fighting for health, so good luck!

    #44254
    thirdone
    Member

    Linda,

    You might want to check out, Wellness House in Hinsdale, IL. They are about 40 minutes from your area. They offer lots of support for cancer patients…their families….in a variety of ways. Please check out their website. There is no cost at Wellness House.

    Lots of prayers!
    Thirdone

    #44253
    gavin
    Moderator

    Hi Rick,

    Great to hear from you again. Sorry to hear that you are not feeling so good right now and I hope that your symptoms subside very soon indeed. Taking things easy today sounds like a good plan to me.

    Best wishes,

    Gavin

    #44252
    lainy
    Participant

    Hi Rick, I also was thinking about you a couple of days ago. I sure hope you get to feeling better soon, loooking forward to hearing better news on your next post. We miss you!

    #44251
    jennifers
    Member

    I’ve been wondering about you as well Rick – haven’t seen your name pop up in a while. Sorry to hear your symptoms haven’t subsided at all – I hope you are able to find some relief soon!

    Jen

    #44250
    rick-kamp
    Member

    Hi Marions – unfortunately, no, my symptoms have not really subsided much yet. I was hoping with the new chemo regiment that would help, but it now seems like my stents might be clogged because my bilirubin jumped and chemo was cancelled yesterday until that is figured out. I’ll post more on that in a differnent post in awhile. I’m not feeling so great today so just kind of taking things easy.

    Rick

    #44249
    marions
    Moderator

    Rick…so nice to hear from you again. Have some of your symptoms subsided?
    Best wishes,
    Marion

    #44248
    rick-kamp
    Member

    Linda,

    I’ve met with Dr. Rubin a few times and I understand how you feel about him. He gives you the hard truth, but it is hard to read between the lines. Especially if you haven’t had any tests done at Mayo. He really likes the tests to be done there. Since I am a Mayo patient, I think he may have been a little bit more accomodating since he could order tests if needed, see my history in their system, and talk to my other physicians. But I certainly do understand how you feel about him. I think he is a very talented Dr. but at the same time I feel like I want to tell him off for not taking charge in the case.

    Perhaps he just needs a little bit of a nicer bedside manner.

    #44247
    slittle1127
    Member

    Dear Linda – I echo the encouagement for you to get family counseling – especially for your little guy. He will need a safe place to express his feelings and if dad is not well equipped in that department, provide someone that your son can establish a relationship with now that will help carry him through the months to come. Trained therapists are good at helping children through play and other modalities to express their feelings about the difficulties they are facing. Few things shake the confidence of little people more than a sick or absent parent. My thoughts and prayers are with you and your family. Blessings, Susan

    #44246

    Linda, Sorry about Mayo and hubby’s lack of support. Maybe he is scared and can’t express himself without a lot emotion that he feels will make him appear “weak”. Guys have to be so macho.

    Dr’s don’t know everything…they just “practice” medicine, some better than others. They gave Mom 1 year and another gave her three months. Ha! That was 15 months ago and we don’t plan on giving up or in any time soon.

    LIVE your life. LOVE every minute. ENJOY the good memories and make many more! G

    #44245
    gavin
    Moderator

    Linda,

    I am very sorry to hear that your meeting with the Mayo clinic did not give you the news that you and all of us were hoping for. But I am glad to hear you say that you are not giving up and that you are looking to see an onc at Loyola. I will be keeping everything possible crossed for you for this meeting and for some good news.

    Thinking of you right now,

    Gavin

    #44244
    rowena32
    Member

    Linda,

    So sorry that the Mayo appointment was not what we wanted to hear. Glad that you are not going to lay down but keep looking for another opinion. Will you have to wait for the insurance approval before you go to Loyota? I was given hydrocodone (generic for vicodin) for pain. It worked much better than Tylenol but it was very constipating. Be sure you take stool softeners right awa, which I learned the hard way. As far as changing oncologists, I know it is a pain looking for a new doctor, but don’t wait. You need a caring doctor and the sooner you find one, the better.

    You will be hearing from me soon.
    Theresa

    #44243
    lisa
    Participant

    Linda, you have your own little cheering squad right here on this board.

    Writing to Dr. Giles or seeking family counseling may be a good suggestion. You shouldn’t have to go through this on your own and with extra family stress from someone who should be supportive of you.

    Whatever happened to the “in sickness and in health” part? You may remind your hubby about that. Did he think everything was going to be perfect? What if he were the one who was sick? Men!

    #44242
    marions
    Moderator

    Linda….Not the news I had been hoping for however, you are a persistent patient and are always searching for new ways to address this disease. Loyola may be able to offer something not thought of before. I am looking forward to hearing your report.
    Linda, you might want to encourage your husband and son to look into counseling certainly, it would be good for your cute, little, guy. It is important for him to establish a relationship with a trusted person within or, outside of the family. In fact, Linda, you might want to also reach out to our Dr. Giles regarding this. I often think that we underutilize the incredible fortune of having someone professional on our side.
    I hope for the infection to have cleared and for your pain to be under control.
    Tons of hugs are coming your way,
    See you at ASCO
    Marion

    #44241
    katja
    Member

    Linda,
    I’m sorry that things were not as you’d hoped at Mayo. Hoping your next options are positive. You have such a hopeful way about you, there must be someone out there who can give you some good news. I love your tag/signature so much.
    Is there someone who will help Jim with Kevin? Perhaps a friend or someone from Jim’s family? I hope there is someone who you can trust to keep an eye on them, maybe a god parent? I hate that you have to worry about whether Kevin will be ok.
    Thinking of you lots and hoping your degree from the school of intuition comes through soon!
    Kate

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