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Waiting, waiting, waiting
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Waiting, waiting, waiting

› Forums › General Melanoma Community › Waiting, waiting, waiting

  • Post
    • August 27, 2019 at 4:29 pm
    Happygal
    Participant
      Ok, so now I wait, to meet with the oncologist, weds. Wait to see what new symptoms come, no more meds, no more radiation, just Decadron to keep the brain swelling at bay. Oh and the last thing showing. I can hardly hear. My eustachian tubes got shut down with the whole brain radiation. There’s fluids behind them and I need to take flonase for about 6 months to see if it will clear it.

      I am scared beyond belief. I don’t know what to do, say, or think , am I just waiting for the end?
      Every time I get a test or diagnosis, it isn’t good.
      I am so confused with my life

    Viewing 6 reply threads
    • Replies
        • August 27, 2019 at 5:20 pm
        Edwin
        Participant
          Tyais,

          I wondered how you were doing. You are in our thoughts. This is so sad. I hope you are able to do some of the things that are important to you.

          • August 27, 2019 at 6:08 pm
          marta010
          Participant
            Thinking of you and sending prayers.

            Ann

            • August 27, 2019 at 7:46 pm
            Christiane29
            Participant
              This must be unbelievable scary for you but there is still hope for you. Try your best to focus on your next goals and steps you want to achieve and believe in the good things, that you will do/learn/get to know in the future. Believe in the power of your own body. Reading success stories also helps to find new hope.

              I think of you and send you a lot of love and trust.

                • August 28, 2019 at 12:57 am
                DoubleTT
                Participant
                  Hey Tracey here DoubleTT somewhat happy really working on that. We have similar stories… Are you NRAS or BRAF… I’m a research nut….There is hope with these new crazy trials happening late fall ..you can PM me behind d the wall for a hug and chat and info.. my hands hurt right now from typing just had a Nivo treatment happily Would love to chat.. I get crippled with fear like you but learning with My psychiatrist at Princess Margaret Cancer Centre in Toronto Canada to slow the fear down. No one in my family or friends can do what my hospital is trying to do to help me with my fears, anxiety and sadness. They have been my rock.
                • August 28, 2019 at 4:16 am
                lkb
                Participant
                  I like what the previous poster said about help. Do you have someone outside your family and friends who can help you handle this overwhelming challenge? Wishing you strength and encouragement and lots of chocolate cake (or whatever your version of comfort is).
                    • August 28, 2019 at 12:39 pm
                    Happygal
                    Participant
                      Thank you all for the kindness, I have my husband and my best friend who have been with every step of the way. Its just wrapping my head around everything, I am not braf so don’t have those trials available.
                      But I am a fighter, and that’s the way I will go down, loving and living my life to the fullest !
                    • August 28, 2019 at 1:00 pm
                    Bubbles
                    Participant
                      You are an inspiration, Tyais!! All fingers and toes crossed for you while holding you in my heart! celeste
                        • August 28, 2019 at 5:05 pm
                        JRmademedoit
                        Participant
                          I’m so sorry you are going through this. Your support system sounds really good…
                          My brother went down this path. I would suggest you talk with your clinicians about a hospice consult. as I’m gathering a younger person not on medicare (I’m assuming you are in the US), you are not subject to the same restrictions as older people,and you may continue treatment while in hospice(this is maybe the one good thing about battling this disease as a younger person). Many people do indeed leave hospice because they are stable or improving, but the nurses and staff there can be really helpful to you and your family in processing everything and getting support you need. Besides increased quality of life, there is research to suggest, that hospice patients live longer than non- hospice patients.
                          My heart to you and your family.
                        • August 29, 2019 at 7:53 pm
                        sing123
                        Participant
                          You will stay ever present in my thoughts.
                          • August 31, 2019 at 5:01 am
                          MelanomaMike
                          Participant
                            Hi Happygal, wow, now thats something having fluids in your ear tubes, thats gotta be painful!! Im so sorry that your enduring this, read all my past posts of all my scan reports, biopsy reports all are POSITIVE for Melanoma, like yourself, it just keeps going on & on & on when can we catch a break? I dont think you caught my post about a month ago or more but, you mentioned working for Folsom, haha, i use to as well! But on the “other” side! Haha…iv been good though! Sober for the past 12 years out of places like that since 2002!… read my bio here at MRF, were 2 peas in pod…hope you start feeling better, and this isnt the end! Or waiting for an End! That quote “End” is up to YOU not your disease, Your incharge of Melanoma not the other way around sis! Ya a decent Working drug might help but Inner Strength is tough, rough and good for your Soul, when we give up we fail, and thats with anything…youll get better, its VERY hard to have faith when were contantly not feeling good…we love you sis, keep up the fight, always remember, were all on the same BattleField…
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