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#193912 - 02/19/17 04:37 PM Re: Pain during RADS [Re: PaulB]
MrsW Offline
Contributing Member (25+ posts)

Registered: 11/29/16
Posts: 43
Hi Paul
all of this .. yes.. it all helps.
I thought of the sponges this week but got side tracked..thank you for the reminder. I just ordered them.

I will discuss the suction machine with our provider on Monday... if the cannula is the narrow, that will be fine as he can drink from a straw.

when he can tolerate drinking fluids like pineapple, I will get that going too. for now much burns.

thank you for your help.

as a nurse... I know things, and yet... things like nasal anesthesia is something I completely forgot about.

I like the idea of bracelets for Oral cancer patients. maybe the OCF can look into them and we can purchase from OCF and with a kick back to this incredible resource.

take good care!
_________________________
MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!

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#193913 - 02/19/17 04:39 PM Re: Pain during RADS [Re: MrsW]
gmcraft Online   sad
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Registered: 10/24/12
Posts: 774
Loc: Toronto, Canada
If you can get hold of watermelons, Watermelon juice is very soothing and doesn't burn.
_________________________
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.

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#193914 - 02/19/17 04:40 PM Re: Pain during RADS [Re: ChristineB]
MrsW Offline
Contributing Member (25+ posts)

Registered: 11/29/16
Posts: 43
I hope you are feeling better and doing well after your need to be in hospital Christine!!!
thank you..

everything you wrote clearly reminds me that there are ways and means to inform health care and others about certain needs for OCF survivors ( which we plan on being... smile xoxo ).

I will check with our provider on Monday about the suction. He has started using the PIK at the suggestion made here

the sun is out today... and he feels he can go out today for little walk. Progress...
thanks to all of you.

xox
_________________________
MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!

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#193915 - 02/19/17 04:50 PM Re: Pain during RADS [Re: gmcraft]
MrsW Offline
Contributing Member (25+ posts)

Registered: 11/29/16
Posts: 43
oh... okay... yes... I can..
thank you.

I did actually find watermelon juice bottled recently.
thank you.

you are all so amazing ... and have supported me more than you can know

I am so grateful!
_________________________
MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!

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#193916 - 02/19/17 11:18 PM Re: Pain during RADS [Re: MrsW]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9435
Loc: PA
Thanks MrsW! Im much better now smile

Speaking of watermelon juice... I just saw some yesterday at the grocery store. It got my attention right away as I hadnt seen that kind before. The watermelon juice was in a half gallon container in the refrigerated section by other juices. Im not sure which brand, Im guessing Welches or Tropicana. I didnt buy it but I am interested in how it tastes to an OC survivor.

Im in PA and here its like a spring day, nice and sunny with unseasonably high temps of 67 smile I hope you enjoyed the nice weather where you are and were able to get outside with your husband.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#193918 - 02/20/17 01:58 AM Re: Pain during RADS [Re: MrsW]
gmcraft Online   sad
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Registered: 10/24/12
Posts: 774
Loc: Toronto, Canada
The watermelon juice that I got good results for was fresh, not in a bottle. I don't know if bottled juice tastes the same. There is much less sugar in the fresh juice.
_________________________
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.

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