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Introducing myself, a spouse caregiver

Angelab66
Angelab66 CSN Member Posts: 1 *
in Head and Neck Cancer #1

My husband has HNC that originated in his tongue. He had half his tongue and a lot of lymph nodes removed. 7 weeks of radiation with cisplatin adjunct therapy. 3 month PET was ~clear but areas to watch under his tongue. 6 month PET, plus punch biopsy (that I pushed for) revealed radiation didn't get it all. He has a mass under his jawline that has penetrated the skin.

He's in a lot of pain now. We had to bring in Delautid in addition to ramping the gabapentin back up.

It's been 12 months since the surgery. Commuting 75 minutes each way to the cancer center. We have no family within 1000 miles. I am managing, but the additive nature of caregiving is starting to get to me.

The hardest current challenge for me is getting him to stay ahead of the pain. I have to be ever-present. Watching for non verbal cues and practically forcing him to take the painkiller.

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Comments

  • ProustLover
    ProustLover CSN Member Posts: 127 Member
    #2

    This is so hard for your husband, and so hard for you….I know from my caregiving role in the past (and to some extent in the present)…that one day at a time is the best you can do - as you try to get enough sleep and nutrition to start each day with some strength and positive outlook. What is the next step for the mass under the jaw? Your situation will respond in some way to the treatment prescribed. Is your husband resistant to the painkillers based on principle? Perhaps one of the treatment team, or even the family doc, could help him see that the drugs are there to help. If it is any comfort at all, the community of H&N caregivers is a big one, and we understand.

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  • Rakker
    Rakker CSN Member Posts: 7 Member
    #3

    I know it is hard to do, but you must also take care of yourself especially to get sufficient rest and nutrition. I just recovered from HNC and my spouse was forced to take better care of herself after a few weeks of taking care of me after my intense recovery from surgery. It will be no benefit to your spouse if in a few weeks you are exhausted.

    I also resisted the pain pills , narco mostly, and learned that if u keep ahead of the pain with a couple large doses (within Dr. suggested limits) you can then begin to reduce the meds to a steady daily schedule.

    Best of luck and keep on keeping on.

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