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Loves2Fly's Recent CancerCompass Activity

  • Loves2Fly has replied to a post on the message board

    I am sorry you are having to deal with this. My husband doesn't want to know all the details, and he is not up to some of them, but for my own mental health, I do need to know what is coming. For me, it helps me know what to ask as well as be able to be strong form him. Great advice from jeanssister.  Having POA for healthcare is really important. It lets you get copies of tests, etc. I get copies of it all, ...

    September 30 at 1:38 AM view post
    • Loves2Fly has replied to a post on the message board

      Swallowing issues are caused by many different things. Swallowing is actually quite complex, and we don’t even think about it until it isn’t working right. what will work depends on what is causing the issues. There are some 25 sets of muscles just within the throat base, esophagus, trach and vocal cords alone! Extensive damage to any or all of these can develop a very wide variety of issues. 1...

      September 29 at 8:19 PM view post
      • Loves2Fly has replied to a post on the message board

        You are not alone. My husband is 3 1/2 years out and has been and will permanently be on a PEG tube.Tests, PT, stim, multiple doctor opinions, you name it, we tried it. He is just recovering (2 months out) from severe aspiration pneumonia from regurgitation.  

        September 29 at 7:58 PM view post
        • Loves2Fly has replied to a post on the message board

          I sure understand the wait.... my husband's case is now at 3 1/2 years "under review".

          September 07, 2018 view post
          • Loves2Fly has replied to a post on the message board

            The ones that are winning their cases (when you can actually get your case in the system) are using the precidences of previous approved cases. Here's where you can find them. https://www.index.va.gov/search/va/bva.jsp

            September 06, 2018 view post
            • Loves2Fly has replied to a post on the message board

              Myhusband (H&N cancer) needed something similar while on radiation, chemo, HBOT, so I made a chart in WORD using a table format and 8 1/2 x 14 paper. I made a simple chart, one for each day. 26 columns - 1 for name of med, 1 for dosage, 24 for hours of the day. Number of rows - as needed - one for each med, but also for temperature, BMs, rating pain level, nausea level, amount of nutrition (feeding tube), dent...

              March 24, 2018 view post
              • Loves2Fly has replied to a post on the message board

                My husband developed necrosis and did HBOT. It worked wonders! He did 60 "dives", about 2 hours per day, weekdays with weekends off.  He had a large spot of dead tissue that would not heal. It caused a great deal of pain, and was spreading. The radiation scarring cut off blood supply to that area, so healing was impossible. He noticed improvement after about 15 "dives" and by 60, the area was completely healed ...

                March 20, 2018 view post
                • Loves2Fly has replied to a post on the message board

                  Hi Kathy, I am so sorry you and your husband are going through this. Phlem is a big problem for H&N patients in treatment. In part, as saliva glands are being affected, there is nothing to water down phlem. The saliva glands in the lower jaw provide "watery" saliva which helps in swallowing and thinning phlem. Gargling with warm baking soda water or just water, (several times an hour) is helpful to break up the...

                  January 03, 2018 view post
                  • Loves2Fly has replied to a post on the message board

                    Hi Donna, No help on the backpack, but here are a few things we found helpful.  Get a letter explaining you have a feeding tube from Doc for travel. Some want to see it and some not, but it eliminated them patting hubby down or asking to see it. We put a copy in checked nutrition, in carry on bag, plus another on person. Call TSA (if flying) ahead of time and they will walk through security with you. They wil...

                    January 02, 2018 view post
                    • Loves2Fly has replied to a post on the message board

                      Sorry you have had this diagnosis. You have come to the right place to ask questions. I am very glad my husband had a PEG tube put in. It helped with not just eating, but with hydration, which is a major issue. I could also crush and dissolve some meds for him and give them through his tube. (Not all meds can be crushed, so if you need to, check first). A PEG tube isn't really much maintenance, but there are tricks...

                      November 27, 2017 view post
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