Good days...

DjFriday
DjFriday Member Posts: 16 Member
edited August 2022 in Head and Neck Cancer #1

Today is a good day and I'm hoping that we all have many good days ahead. I am so appreciative that I have found this board and have gotten so many positive, helpful responses with great ideas and tips to help me along the way. I know that my care team will assist me with medical advice and be assuring in my treatment. However, I also believe that getting advice and answers from people that have lived thru it and know what the battle entails, that is the most useful. That saying of " until you have walked a mile in my shoes", thats what I'm talking about. When I was diagnosed, it was a shock and for awhile I really didn't think the doctors could be right. All my life I was pretty healthy. I went to the doctor maybe once every 5 -7years. It sank in when I had my appt with my radiation oncologist. Yes, all the scans and blood tests and even the biopsies still had me wondering. Maybe it was just twilight zone and me in denial. But it hit me when I was in his office and going over what to expect with radiation. Then all the "what ifs" and "oh my God" and "what am going to do" started spiraling. I googled things that only left me with more questions and finally I found this site. I feel fortunate that happened. I'm sure that I will be asking and inquiring and just plain venting and I hope we all have good days. Thank you for listening.

Comments

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #2

    Good Day DjFriday,

    I am glad you found this site also, a lot of knowledgeable people roam this Discussion Board. I am sorry that you are here to begin with and I see you have met some of the helpful Survivors. Once here, you are Family, we lean on each other, vent when needed and laugh when we can. Try to stay away from Dr. Google, a lot of the information out there is outdated.

    Short story on my end, Base of Tongue cancer, Surgery to remove part of my tongue, Radical Neck Disection, Feeding Tube (PEG Tube) followed by 30 Radiation Treatments. Chemo was a backup plan. Used the PEG Tube right from the start because of the surgery on my tongue. If you don't use it at the beginning, make sure you flush it at least twice a day with the Syringe provided. You will receive instructions from your Team.

    My Best to You, Your Family and Everyone Here

  • DjFriday
    DjFriday Member Posts: 16 Member
    #3
    https://csn.cancer.org/discussion/comment/1698663#Comment_1698663

    Thank you for the advice. Yes, I am staying away from googling any more information. Its confusing and a lot of it is just negative. We all need more positive in our lives. I have started a notebook with the advice I have received and will add the tube flushing to it. I have heard about magic mouthwash. Is this something to buy or make? I'm thinking it may be beneficial. Can you explain it to me? Thanks.

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #4

    Hi DjFriday,

    When I went thru my treatments I was not told about a "Magic Mouthwash". I was told to use 1/2 Teaspoon of Salt and 1/2 Teaspoon of Baking Soda in 1 Quart of room temperature water. Rinse and Gargle as needed to take the edge off of any discomfort. I carried 2 bottles with me when every I went out. 1 bottle of water and 1 bottle of my Salt/Baking Soda solution. It did me well as I would rinse every 20-30 minutes if I felt I needed to. I later increased the dosage to 1 Tablespoon of each since I could at least taste the Salt.

    After I was done with treatments and found this site I learned of the "Magic Mouthwash". Your Doctor writes a Script for you to have this made up. Many here have used it, I wish I knew of it during my time as I would probably have used both each day. Your Doctor(s) will help you with any pain management that is required and don't be shy about asking. I had a good Team and I can say I was never in any pain, some discomfort along the way, but manageable.

    My Best to You, Your Family and Everyone Here

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #5

    Welcome to the forum. Just hang strong and lean on your cancer team anytime it is necessary and follow their instructions. Sorry, you have to be here but as you encounter something new in this journey just post and somebody can help.

    Take Care God Bless-Russ

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