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A second saga for a new challenge

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    I had another PET scan and heat CT last week. My oncologist called and there are more bone metastatic sites and it has hit my brain. They are going to discus the results at the tumor board and then I will meet with my oncologist again Thursday.


      Latest update is my hha schedule is a total state of someone is supposed to come when? It has been over a week and a half since people have been showing up. I was offered a series of radiations to help with pain management in the worst shoulder blade. One of the original bone mets sites and the one that has given me the most issues. With the state of SNAFU my HHA is in I could not do it. I mean i do not leave the apartment in the morning while I stink and have on dirty clothes. And of late my transferring, hygiene and dressing skills have hit an all time near low.. It feels weird facing the fact that I am basically just waiting to stop breathing.


      • triumph
        triumph commented
        Editing a comment
        Hello Reader,
        Just chiming in again. It's frustrating to hear that home care is an issue. I have cleaning ladies who provide services for a man who has advanced cancer and they say that his helpers are a problem. A nurse only shows up once a week to monitor meds, and a poorly-trained attendant care person is fuddling up his medication, missing his doses. The cleaning ladies find themselves in the position of providing some of his personal care. They have known the guy for years and care about him in this situation. I thought Hospice services were supposed to help, but I think it's only the once a week nurse.

        It seems like you should have someone stopping by daily. Can you ask the VA to help with this?

      That sounds scary and painful. I can’t even imagine, yet we’re all gonna be there in one way or another. I hope it goes easy enough, and you can find some kinda comfort in the midst off all this, even if that’s just knowing it’s gonna be over soon.

      I’ve just gotta ask, respectfully, if it was all worth it? All the fun, laughter, and love vs. the pain, heartbreak and misery. Would you do it all over again? Or have you had enough and want it over sooner than later? Either way I send my love and condolences from the west coast. Thank you for sharing


        Have you considered home hospice care? This is covered by Medicare and most insurances, and you can be on it while receiving palliative treatment such as radiation for bone pain. A HHA may be provided under this, and an RN will be able to manage your pain management program. Talk to your physician about this. If you live alone, that may be a problem, as most home hospice programs require that a family member or friend be present in your home. Not sure what your situation is, but it should at least be explored as an option.

        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


          I thought that ADA was supposed to assure us, we receive the necessary care to live at home. Home Health Care is a vital component of quality life at home.
          "Researchers have estimated that, as of 2019, 17,730 new SCI cases occur each year and between 249,000 and 363,000 people are currently living with SCI in the United States."
          We need more at home services, Wound Care & Incontinence supplies and better quality DME [wheelchairs, lifts, commodes, positional power beds...].