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Joined: Feb 2018
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Joined: Feb 2018
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My sister is having her surgery Monday (2-5). She has stage 3 cancer in her tongue. She's having part of her tongue and the lymph nodes in her neck removed. She'll be staying with me when she's released. My question is, what can I do to make things as comfortable and easy for her as possible? In the hospital should I have an erase board? Is there anything comfort-wise that people recommend or wish they had? And once I get her home, what kind of things would make the transition easier for her? I'm sure we'll get input from her doctors, I'm looking for the kind of things that people look back on and think, "hey, that would have been nice" or "that really helped." Thanks so much!!!

Joined: Jun 2007
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF! We will help you with info and support. Your sister is lucky to have you helping her.

While your sister is in the hospital, she should have someone with her as much as possible, even around the clock. Depending on how invasive her surgery is, she may not be able to speak very well for a while after the surgery. She is likely to be in pain and wont feel up to very much while shes hospitalized. She could have a trach with this type of surgery. Hospital staff will be in and out of her room 24/7 making sleeping difficult. The staff will speak to your sister even if she isnt able to talk. It happened to me when I wasnt able to speak, staff didnt bother to check the signs before they came into my room. Having someone there to advocate for her would be a huge help while shes in the hospital. If she's in pain they can notify the nurses to get her pain meds. She may not be able to eat while in the hospital. Dont be surprised if she still gets trays of food she isnt able to eat delivered.

I suggest asking about having a visiting nurse to help your sister when she first goes home. It can be a huge help having someone check on her to ensure shes doing ok. Yes, a dry erase board may be a help. Theres also an app called speak it that speaks out loud what is typed. That can work great for people whose speech isnt as clear as they would like. I also suggest your sister should ask at her treatment facility if they have a speech therapist/pathologist available. If your sister has a graph or free flap she will need help adapting to her new tongue for eating and talking. Maybe she'll get lucky and there would be one available who does home visits like visiting nurses do.

You may want to ask her what soft foods she would like to eat while shes at your house. Her mouth will be pretty sensitive so opt for mild, bland foods that are easy to eat and are not spicy. Things like toast, spaghetti, pizza, etc would not work for someone just out of surgery. I suggest scrambled eggs, poached eggs on light toast, oatmeal, canned fruit, bananas, pudding, mashed potatoes, mac and cheese all would work for easier to eat foods. Make sure you talk this over with your sister to make sure she will at least try the things you planned on making for her.

Hope this helps. Best wishes to you and your sister.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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