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Joined: Oct 2012
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Hi Pam,

I had the same fights with my husband all through. I believe until the patient gets hit with problems like taste changes, weight loss or swallowing pains during radiation, he/she can’t really comprehend what it’s going to be like. My husband did not read up on anything about his treatment at all and when he got hit by the side effects, it was devastating for him. John loved jello and when swallowing got harder for him, I suggested getting him some jello as a treat. He was happy about it. However, he threw a temper tantrum when he realized the jello tasted metallic to him and it was not at all what he’d imagined it to be. Another time, using a recipe I got from the hospital dietitian, I made him a Moroccan dish, which he thought he would like. But when he realized it had to be blended so that he could swallow it, he simply refused to eat it. At Christmas, his MO gave him permission to drink two glasses of red wine, but it turned out to be a total disappointment to John because the wine at that point tasted like sour grape juice.

It was very frustrating to me because, like you, I tried everything I could. John thought he could waltz through the treatment and go back to his old life. He was a big and strong guy, so not being able to impose his will on his own “weakness” upset him to no end. He would tell other people that I was quite “knowledgeable” (actually from reading the posts on this forum), but it did not make him any more co-operative.

I am not minimizing your effort, rather, I just want to say that i’ve been there before and I can empathize. I understand how hard it can be. The hard part about caregiving is not the physical work, it’s the emotional support that we have to give, and at a time when we ourselves feel we need emotional support big time. That’s how I saw it.

BTW, do you have a Waterpik? Using the tongue scraper attachment on the lowest setting with a capful of magic mouthwash mixed in with the water does wonders for removing the sticky saliva. I learned this from reading posts here. John used to say it was the best investment we had made.

Do keep posting, even if it is just venting your frustrations. We will try our best to support you.


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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"OCF across the pond"
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Gloria, thank you for the waterpik suggestion. I shall purchase one of those, with tongue scraper, ready for when the mucus waves hit.

I wish in the UK we had magic mouthwash. Its not a thing here, sadly.
I know I'll have a fluoride mouthwash, but nothing to relieve pain.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Joined: Jul 2019
Posts: 34
Pam42 Offline OP
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Hi Dizz,

Yes I do use only fruit and vegetables and I sometimes add fruit juice in his NutriBullet so I can continue with those. We will just have to not do the shakes anymore unless I find a substitute without dairy.

Your flap and stitches sounds a lot like he says his feels. I think it's the same with him that he's able to move it from the back just a little.

Thank you again. Yes, you're right. I do need to give myself a mental and emotional break somehow. Maybe I'll think of something.

Best of luck to you Dizz! I'm always wishing the best for all of you guys. Hoping you breeze right through!! Keep us posted.


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Joined: Jul 2019
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Pam42 Offline OP
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Hi Gloria,

Yes! I feel exactly what you're saying!

He doesn't read anything either and he really doesn't want me reading it to him. 🙄🥴 But sometimes I do, if it's something I think he really needs to hear. And he tells me to stop reading about it. And he's probably right I think I do put too much time into it and end up driving myself crazy I need to find a semi happy medium. If you can call it that. Nothing "happy" about this situation. smirk

Aww, frown. That's sad. I know it has to be so hard on their side and no, I don't feel like you're minimizing my effort at all. I totally get what you're saying.

I haven't bought a waterpik yet I did run across some posts suggesting it and so I looked at one, 1 day when I was out but I hadn't researched about it too much yet and didn't know exactly what kind to buy...

I will definitely look into that and the magic mouthwash. We don't have any of that either yet.

Thank you guys so much again. I will check back in soon.


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Joined: Jul 2019
Posts: 34
Pam42 Offline OP
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Awww Dizz_zzey,

Now I'm upset that we cant get you some magic mouthwash. 😕


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Joined: Oct 2012
Posts: 1,275
Likes: 7
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I bought my Waterpik at Costco. For the price I paid, I got a counter-top model and a travel waterpik. So it was very good deal. The counter-top model is the one with all kinds of attachments, including the tongue scraper.

Dizzy, I was surprised to hear that in the U.K. you don’t get the magic mouthwash. It’s used to numb the mouth before eating. Although I believe it’s only good for about 15 minutes or so.


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.
Joined: Jul 2019
Posts: 34
Pam42 Offline OP
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Thank you!

I will check into that.


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Joined: Jul 2019
Posts: 34
Pam42 Offline OP
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Hey everyone,

We are on week 3 of radiation and the painful swallowing has begun. frown

Any and all suggestions for relief would be helpful. Does anyone know the best pain medication and any other tips?

He is using honey before and after radiation. I am going to check on magic mouthwash but for now he isn't taking anything for pain. Is there anything in particular that may help?

I read about an aspirin gargle and warm tea, broths. So far, that's all I've found.

Thanks,

Pam


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Joined: Jun 2007
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You mentioned honey. Is that Manuka Honey? I had forgotten all about it as I was already thru rads when I first heard of it. Back then no published study showing it was beneficial had been done yet. Unfortunately OCF being a strictly science based organization could not get behind something untested. Theres far too many miracle cures on the internet where predators always seem to make things sound beneficial, convincing everyone whatever they are currently peddling is the best thing ever. Im not sure exactly when Manuka Honey's study announced their results but it was confirmed to be a good, helpful item. There have been several here who used the Manuka Honey on mouth sores and for their sore throat. Everyone who tried it, always praised Manuka Honeys healing properties. Hope this helps!!!


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
Joined: Jul 2019
Posts: 34
Pam42 Offline OP
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Hi Christine,

It was actually the cancer center who suggested swallowing honey 15 minutes before and after radiation. They didn't specify what kind but I had some local honey. I use it myself because I've heard it helps allergies and other things. So he has actually been using that. I hadn't heard about manuka honey until you mentioned it but we may try it.

Thanks!


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

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