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#200694 02-11-2021 02:53 AM
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As if surgery wasn’t daunting and terrifying enough, with all the COVID restrictions, his family and I can’t even be at the hospital for his surgery. We are supposed to receive text message updates as his surgery progresses. Then once he in in his room after going through recovery, 1 person can see him for an hour. Then everyday he is in the hospital, 1 person per day can see him for 2 hours, and the time can not be split between multiple people.
He is really close with his family. He is concerned that with him not being able to communicating well verbally that he will have to rely on his text to talk on his phone which will make FaceTime or phone calls very difficult. Does anyone have any suggestions?

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it was kind of like before covid with the communication stuff. it was odd but it was how they did it. I'm sure covid has made it even worse and less personable and I am referring to University of Iowa. We were there in Feb 2020


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
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"OCF Canuck"
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"OCF Canuck"
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Have any family who can’t get there write letters, send photos photos, etc that he can review frequently.

I remember being annoyed when People tiptoed around so maybe a 2 hour time limit is a good thing - for the patient.

Also, many hospitals have a way for people to send electronic messages-delivered by volunteers. Check it out.


Donna,63, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!
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I went thru surgery during C19 protocols last April. Absolutely nobody allowed in with me the entire time. We managed with texting, emailing, and when i was up for it, a phone call or facetime. I also had the nurses tape a few short videos once i was up for it.

At first, I was pretty nervous about not having a loved one with me. But, honestly, looking back, i think it helped me recover sooner as i was forced to advocate for myself. I had to take notes and write everything down. It wasn't easy, but I recovered quickly and was able to go home about a week early. And, I knew exactly how to take care of myself.

Sidenote, those videos and pictures are precious to me now. It's powerful to see how far I have come with my speech, everything. Also, take journals with you. Write everything down. Feelings, doctor's feedback, meds, questions, etc. I would show the doctor my "20 questions" and make sure he answered them all every morning. I sometimes reread all those notes. Therapy for me then and now.

Something like a boogie board would be helpful. It was hard to speak, but a cheap electronic writing pad was very helpful for communication with the nurses.


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

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