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    Wayne shared an experience

    Loss (Lost loved one): I miss you so much! I will always love you Wayne and someday we will be together! Maggie

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    Wayne posted an update

    Wayne is losing his battle against cancer and chemo is no longer an option. His spirit is amazing and every day he tells me, "don't worry babe, tomorrow is going to be a better day". He has never once complained of the pain says, tells me, "there are so many people worse off than me." We have been trying palliative care at home, however bouts of GI bleeding, paracdentisis, blood transfusions, pnuemonia and not being able to hold his meds down lead us back to the hospital. He was admitted at Kona Hospital again yesterday, the 5th time this month.
    It is heart breaking to watch the one you love go through this. Oh how I how I wish I had a magic wand. Some days I just shake my self, thinking I'll wake up from this really bad dream. In the beginning, when Wayne was diagnosed, I asked my self over and over, "would I rather lose some one suddenly, or know that it was coming? My answer is I'd rather know that is was coming . . . I will have no regrets or any " I wish I would ofs, should ofs and could ofs".
    One year ago today, I was in the the hospital with my stroke and it was one year ago today I quit smoking. I remember making party favors out of bed pans and blowing up latex gloves. (I'll have to find that picture) Off to the hospital shortly for a New Years Eve date my man, the most amazing person I've ever met. Happy New Years and cherish the ones you love.

    3 Comments
    • danellsar's Avatar
      danellsar

      I'm so sorry. What a nightmare, a never ending one. Enjoy your date and spend as much quality time with him as you can!!!

      almost 5 years ago
    • Stevedarke's Avatar
      Stevedarke

      The truth is you are both in this together, for my part I would rather have this illness than watch a loved one go through it. It is your love that will get you through these dark days and give you the strength to stand beside Wayne in his time of need. Say the things you need to say for this time is presious and you shall have no regrets becuase you are giving all you have to give just by being by his side.

      Take care,

      Steve

      almost 5 years ago
    • DaveWaz's Avatar
      DaveWaz

      I hope your date went well. Wishing the best for Wayne. Did you happen to see a post on our blog by @robcares? Below is a link. Enjoy.

      http://blog.whatnext.com/blog/peer-perspectives/guest-blog-keeping-the-spirit-of-the-holidays-when-dealing-with-cancer

      Happy New Year.

      David

      almost 5 years ago
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    Wayne shared an experience

    Oh No (Problem with doctor): We just got back from radiology and the little cancer growth spotted 11/20/11 on his left femur was the tumor the size of an orange. He has lost so much weight I thought it was his bone sticking out. The Radiologist last week said that we shouldn’t be concerned about anything. He told me that I should not be reading reports because I will misunderstand them leading Wayne to think he is in more pain than he really is. Wayne’s Oncologist missed the report which I brought to his attention. He apologized, he couldn’t believe he missed it.

    It appears to me there are too many cooks in the kitchen and patients need to have a Case Manager that can oversee treatment. You have to go to your GP for pain management, an Oncologist for to give the patient choices of treatment, a radiologist who reads scans, Xrays with no history of the patient (he thought given the fact there was a titanium hip and rod that the tumor was a part of it) We go to the Radiologist today and he did not have access to any of Wayne’s medical records. I could of screamed.

    Okay, I feel better now that I have vented. Good news is he starts radiation tomorrow which will take care of the pain . . . it’s just sad that he had to go through two weeks of XXX and every time we called or visited were just given an increase in pain meds .. .

    Maggie for Wayne

    1 Comment
    • danellsar's Avatar
      danellsar

      Maggie- This is totally wrong!! Does your oncology office have a social worker who can coordinate things? One of the things I do like about my husband's doctor system is that everything is on computer, so every doctor can see it all. So when we talk to the oncologist she has access to everything, and so does the radiologist and the infusion center and everyone. So many things were caught by one doctor and not another (or by a nurse).

      Do ask for a case manager, but realize that person is likely not going to be a medical manager, just an administrative person to work on coordination of benefits and appointments.

      Your oncologist should be the person in charge of the whole thing, managing his care at this point, and not a GP. A GP just doesn't "get it" as far as cancer pain, which is SO FAR beyond normal pain that it's ridiculous. Them saying you are scaring him and making him think his situation is worse than it really is is just disrespectful.

      Remember that you are first and foremost his advocate!! Make noise, be pushy, tell them when you think a mistake has been made, ask for explanations, and never never never take "no" as the final answer!!! Can you tell how much the doctors love me????
      Ellen

      almost 5 years ago
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