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#193912 - 02/19/17 04:37 PM Re: Pain during RADS [Re: PaulB]  
Joined: Nov 2016
Posts: 59
MrsW Offline
Supporting Member (50+ posts)
MrsW  Offline
Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
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!
#193913 - 02/19/17 04:39 PM Re: Pain during RADS [Re: MrsW]  
Joined: Oct 2012
Posts: 854
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 854
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.
#193914 - 02/19/17 04:40 PM Re: Pain during RADS [Re: ChristineB]  
Joined: Nov 2016
Posts: 59
MrsW Offline
Supporting Member (50+ posts)
MrsW  Offline
Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
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!
#193915 - 02/19/17 04:50 PM Re: Pain during RADS [Re: gmcraft]  
Joined: Nov 2016
Posts: 59
MrsW Offline
Supporting Member (50+ posts)
MrsW  Offline
Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
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!
#193916 - 02/19/17 11:18 PM Re: Pain during RADS [Re: MrsW]  
Joined: Jun 2007
Posts: 9,676
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,676
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
-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
#193918 - 02/20/17 01:58 AM Re: Pain during RADS [Re: MrsW]  
Joined: Oct 2012
Posts: 854
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 854
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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