| | Joined: Jan 2006 Posts: 43 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jan 2006 Posts: 43 | Hey all,
One of the features of the OCF mobile app is going to be one called Speak For Me. This will allow patients who have difficulty speaking a way to have their mobile device speak simple phrases for them. They will also be able to send that message to their caregiver. We have started putting together the list for which phrases to include. Some of them include,
I'm hungry, I'm thirsty, I need medication, etc.
There is also going to be a pain scale as well.
But we want to hear from you. We would like to see what phrases you think need to be included as well. I won't say that all suggestions will be included but the more suggestions we can get the better.
Thanks in advance,
Erik
Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs
2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16
3rd - SCC right base oral tongue, surgery, hope.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | This is great, Erik. I've forwarded this post to my son for his input. When he was in TX, there were times when he was so frustrated at not being able to express himself. From the caregivers standpoint, I might suggest:
1) I'm out of pain meds.
2) Did you put salt in my soup?
3) I'm OK.
4) I can't taste it.
5) Yay! I can taste it!
6) I'm constipated.
7) You are driving too slow!
8) I'm tired.
9) Please be patient with me.
and especially . . .
10) I love you.
BTW - Will there be a choice between a male or a female voice?
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | I need to see my doctor.
Please get the nurse.
I need pain meds, NOW!
I am in pain.
YES!
NO!
I cant talk so this will talk for me.
Its time for my feeding.
Can someone please help me?
Am I allowed to go for a walk?
Can someone please call my family?
I need my family here for that.
I need to use the bathroom.
I need help using the bathroom.
I used the bathroom earlier.
I cant make that decision right now.
What time is it?
When can I have more pain medicine?
What did my doctor order for pain?
Thats not right.
Please tell my doctor.
I am nauseous.
Can I take a shower?
Can someone help me with my shower?
Can someone wash my hair for me?
I need help to clean myself up.
When can someone help me?
I want to go home.
Thank you.
Please.
Since they always ask you to rate things on a scale of one to ten, listing each number would useful.
ChristineSCC 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  | | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | I am afraid.
My blood sugar is low.
I am constipated.
Stay with me.
I need the nurse.
My mouth is dry.
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Here is my son Paul's contribution:
<<i think it would be imperative to have some humorous selections in there too. as you know, cancer is depressing. having some selections in there just available i think would do a lot to provide a random dose of levity, something like a selection of knock knock jokes, or one liners, something quick that doesn't require a long attention span. Also not so jokingly, something about bathroom needs and grooming, like shaving or haircuts or teeth brushing.>>
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | "Get me a sammich woman!" Sorry that was to piss off Aly ahem Carry on with the important stuff now... 
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jan 2012 Posts: 112 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2012 Posts: 112 | My main text phrase after surgery:
- CAN I GO AWAY, NOW?
December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Will there be different choices of male or female voices to do the talking?
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jan 2006 Posts: 43 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jan 2006 Posts: 43 | Ann Marie, Yes I am making sure to have both male and female voices.
Also, I am in need of more phrases in the following categories,,,
Fun Phrases
Nutritional Needs
Medical Care
Help or Assistance
Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs
2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16
3rd - SCC right base oral tongue, surgery, hope.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im hungry.
Im thirsty.
Please make me something to eat.
Can you get me a drink of water?
I need a straw.
I will need a spoon.
Can I have a knife.
I need a fork, please.
I cant eat this.
This tastes terrible!
I LOVE it!!!
I HATE it!!!
The worst is finally over.
I will get better.
Sorry Im so slow.
Please have patience with me.
Hurry up!!!!
Can you make me a doctors appointment?
I need to see my doctor ASAP.
Im in alot of pain, please call the doctor.
Ask if there are cancellations.
The doctor always will fit me in.
Dont take NO for an answer.
You have to be more assertive.
WHAT THE HECK!!!!
GGGGRRRRR!!!!!
Im soooo angry!
Boy, that makes me mad!
Why not?
Please tell me about it.
What time is it?
What day of the week is it?
What do you think?
What would you do?
What would you recommend?
I dont understand, what does that mean?
What it that?
What happened?
What did they say?
Whats the weather like today?
How about tomorrow?
Whats wrong?
Its hot in here.
Im cold.
When are you going?
Where is it?
Will you be back soon?
Where were you?
What were you doing?
Are you feeling ok?
You dont look good, everything ok?
I didnt sleep last night.
Did you sleep last night?
Please remind me.
I forget.
I wont remember.
Did you eat?
When can I eat?
Can I eat when I take that medicine?
Am I allowed to take the different medicines at the same time?
Are there any interactions with these medicines?
Ask the nurse.
Ask the pharmacist.
Call and ask the pharmacist.
Call and ask the doctor.
Please check with the doctor.
Im still waiting for the test results, please call and ask.
I cant hear you.
I dont care.
Im not doing that.
I said NO!
I dont want to.
Please dont make me do that.
I dont like it.
I want more.
Can you get me more?
That hurts!!!!
My head hurts.
I have a headache.
My neck hurts.
My tongue really hurts.
The pain is worse today.
I feel a little better today.
List all the numbers by themselves between 1 and 10 (patients are asked to rate their pain on a 1 - 10 scale so having each number to play would be a good idea)
I need my sheets changed.
I made a mess.
I need a bath.
I need a shower.
I need my hair washed.
I want to brush my teeth.
Can I have my hairbrush?
I want to fix my hair.
Can I have a comb?
Ive been waiting.
Im tired of waiting.
Its taking too long.
It doesnt work.
Please fix it.
I need the remote.
Please turn the radio on.
Can I listen to the radio?
Can I watch tv?
I love this show.
I hate that show.
I dont want to watch that.
I want to sleep.
Im so tired but cant sleep.
Can I get something to help me sleep?
Please leave me alone.
I want to be left alone for a while.
I want to be by myself.
I need some time alone.
I need to go home.
I appreciate everything you have done.
I refuse!!!
No way!!!
Yes, please!!!
I trust you.
I know you will do whats best for me.
I wont let you.
I need help.
I dont understand.
I understand.
What do you mean?
Please explain it more clearly.
Its hard for me to understand everything right now.
My memory isnt every good.
Please excuse me, Im not feeling well.
It wasnt me.
I didnt do it.
I dont know.
Why?
What?
Who?
Where?
When?
Right here.
This hurts.
I need pain meds.
I need more pain meds.
The pain meds arent working for me.
It still hurts alot.
Is there a different pain medicine I can take that will work better?
I cant hear you.
You are talking too low.
Please speak up so I can hear you.
I need my hearing aid.
Where is my hearing aid?
My hearing aid isnt working.
Can you write it down?
I wont remember.
Did you see this?
Can you tell the doctor?
Can you tell the nurse?
Look at this!
Curse words and other expletives individually like CRAP! SHIT! OH SHIT! DAMN IT!, etc....
ChristineSCC 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 | | |
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