Noob with floor of mouth cancer

wbcgaruss

ozymandible said:

Grinding up pain pills and

Grinding up pain pills and other meds to put into my tube.  Pain pills every 4 to 6 hours depending on what I'm taking.  Gabs are six hours, vikes are four trying to do both every six hours just to keep it simple.  Compazine is every six hours too.  Nothing too earth shattering on the pain meds.

It Seems You Are

Getting into a more challenging time in your treatment but are handling this all quite well.
I am glad you are staying ahead of pain and other problems by being proactive on your meds.
Take Care-God Bless-Russ

 

ozymandible

I mixed up some magic

I mixed up some magic mouthwash. Some liquid nystatin, milk of magnesia, benadryl and lidocaine.  It is helping a little.  Holding about 5 mil in my mouth as long as possible and swallowing teeny bits to help my throat.  I'm not mixing up a massive amount just one day at a time

 I haven't had to beg for much of anything because every time we get RX meds we save them until they expire.  Sure is nice to have some vicodin around if you throw your back out or sprain something.  It's also nice not to have to beg for RX meds!

Prepper mindset in action. 

wbcgaruss

ozymandible said:

I mixed up some magic

I mixed up some magic mouthwash. Some liquid nystatin, milk of magnesia, benadryl and lidocaine.  It is helping a little.  Holding about 5 mil in my mouth as long as possible and swallowing teeny bits to help my throat.  I'm not mixing up a massive amount just one day at a time

 I haven't had to beg for much of anything because every time we get RX meds we save them until they expire.  Sure is nice to have some vicodin around if you throw your back out or sprain something.  It's also nice not to have to beg for RX meds!

Prepper mindset in action. 

I Am Glad

You are finding ways to deal with the situation at hand.
That sounds like a neat combination you mixed up, maybe a patent and marketing is in the future.
When dealing with H&N cancer treatment and all the effects and changes happening around it being inventive helps.
I agree on the pain meds or any meds while dealing with any of my cancer situations the docs didn't hold back and made sure you had what you needed.
It seems to be pretty universal that the medical folks help all they can to get you through a cancer situation and make the path as easy as posssible because they know it is one of the toughest or probably the toughest things people will face in their life.
You are doing great ozy-Keep it moving forward-Take care-God Bless-Russ

ozymandible

Radonc nurse gave me some

Radonc nurse gave me some domeboro and silvadene.  I am trying to stretch everything so I put half a packet in warm water and dissolve it.  Then I take clean washrag and dip into the solution.  I wrap the washrag around my neck and secure it with a binder clip.  I let it sit a while to soften things up then gently wipe away crusties and apply a thin layer of silvadene after it dries.  The silvadene has already helped a bunch and it's only been a couple days and the domeboro soak helps to gently remove crust and provide clean area to apply silvadene.

ozymandible

OMG hurts soooo bad to

OMG hurts soooo bad to swallow!  Just trying to sleep.right now.  Looks like I'll just be trying to eat and sleep the next couple weeks.  I might order a vitamix and have the kids fetch it for me so I can make real food to put down my tube.  Would probably heal faster...  Might be well worth the money...

wbcgaruss

ozymandible said:

OMG hurts soooo bad to

OMG hurts soooo bad to swallow!  Just trying to sleep.right now.  Looks like I'll just be trying to eat and sleep the next couple weeks.  I might order a vitamix and have the kids fetch it for me so I can make real food to put down my tube.  Would probably heal faster...  Might be well worth the money...

Sounds Like

Your treatment is running the normal course, very sore throat, burns on neck from rads, tired.
I think I was in the same boat at the end of treatment and for awhile after treatmernt.
I remember for awhile if my rear end hit a chair I was sleeping so if I wanted to get anything done I would not sit down till i was caught up.
Also like you spent my day getting in food and meds all through the tube.
It does take time to get the amount you need fed in the tube.
So hang in there If I remember right you have very few rads to go you are almost there.
Wishing you the best-Take care-God Bless-Russ

ozymandible

Only one more rad Russ!  I've

Only one more rad Russ!  I've had two days off so doesn't hurt quite as bad to swallow this morning but will probably be really bad after the very last one cancels out the two days of healing.

Looking forward to getting that Vitamix.  Beef stew instead of corn syrupy goo!  I won't be able to taste it but I bet I'll be able to feel it!

ozymandible

Yay!!!!!  The last treatment

Yay!!!!!  The last treatment is done!!!!!

wbcgaruss

All I Can Say Is

WOW & CONGRATULATIONS

Now onto healing and final recovery time.

ozymandible

Thank you so much for all of

Thank you so much for all of your encouragement.  I appreciate it so much.  All the information and encouragement you give everyone here-you are phenomemal, Russ!

Hi lurkers!

wbcgaruss

That's OK ozy

Hate to see you posting every day and not respond at least once in a while.
You went through a tough stretch and are headed probably into another tough period for a while.
I know how tough it is and I don't want folks to feel alone.
Treatment-Done and now the recovery and you will start feeling like you are turning a corner after a bit and it will just get better from there on.
Still Wishing You The Best-Take Care-God Bless-Russ

ozymandible

So funny how you bond with

So funny how you bond with people.

At the place where I got radiation there were a couple of older ladies that really grew on me.  

Anyway, yesterday was my last day and I cried when I saw one of them.  I told her I'm still praying for her every day.  I saw her everyday while waiting to get into radiation room.

There was also a lady that worked there that I remember from years ago when my husband went there for his lung cancer.  She always was a real sweetie.  I cried when I said goodbye to both of them.  I had no idea how emotional I would get or that I would bond with these people so much.

wbcgaruss

ozymandible said:

So funny how you bond with

So funny how you bond with people.

At the place where I got radiation there were a couple of older ladies that really grew on me.  

Anyway, yesterday was my last day and I cried when I saw one of them.  I told her I'm still praying for her every day.  I saw her everyday while waiting to get into radiation room.

There was also a lady that worked there that I remember from years ago when my husband went there for his lung cancer.  She always was a real sweetie.  I cried when I said goodbye to both of them.  I had no idea how emotional I would get or that I would bond with these people so much.

Yes Absolutely

Many if not all of us do in one way or another.
We bond very closely at times.
I think part of it is you are in a life-threatening situation and these are the people that are there providing loving care, treatment, comfort, and help to get you through this in the best possible fashion possible.
For many of the providers of cancer care, you wonder why some of them do it as they are around some of the sickest people around and you would think it would be so depressing after afterwhile.
But it doesn't seem to be the case as these people go above and beyond and show love and compassion when you need it most and are happy in doing it.
I always said all the nurses and doctors I have been around in my cancer situations were nothing but the best and they have a heart for their patients and show compassion and caring and have a hug, handshake, or a shoulder to lean on in your toughest times.
Believe me, I have been around cancer providers more than I wanted and some people have some bad times they talk about with their providers but I can't say one bad word.
I can't remember them all but I remember a young nurse that had been training just to be a cancer nurse and loved it and opted to be on the cancer floor of the local hospital where I received 24 hours a day chemo for 2 weeks with time in between to let my blood count build back up. She made cancer treatment her career and always seemed to know when you were feeling extra bad and would give you an extra hug and some kind words to let you know she was there for you.
I also remember another nurse only this was a male nurse and the head nurse in charge of the cancer floor, he also made cancer his career. But I found he started nursing school after he had his own cancer and after a year-long battle decided cancer care and nursing was where his heart was and signed up for nursing. This guy was really sharp and quite an advocate for his patients. So what a success story from a cancer patient to lead shift nurse on the cancer floor of a large hospital.
I remember nurses that did just about everything for me in my last situation at Hershey Medical as I was too weak to do a lot for myself. They helped me walk around the block so to speak on the floor I was on and kept me as active as I could be at the time.
I remember top-notch doctors and surgeons also doing their best to save the day for me.
I also remember a wonderful gal that was giving me radiation treatments got me through a really tough time. My parotid gland swelled up and I had an infection and high temperature was back in the hospital and one of my chemo docs was visiting me for a checkup and follow up and was upset that I wasn't getting my radiation treatments. So he immediately got me set up for transport the next day to the radiation center. (Glad he did as he said we can't let much time lapse these treatments need to start again) Very great doc, very proactive for his patients and I even remember his name Dr. Reddy and he was. So when I went out for radiation treatments I was still having trouble getting my mask on due to the parotid gland swelled up on the side of my face and breathing was a little difficult and was a little panicky and the mask was tight and this gal talked me through it and calmed me down and basically said you gotta do this we don't have time to make another mask and her presence and demeanor and whatever she said got me through that first radiation treatment restart and after that, I continued on and got them all finished and the swelling went down on the Parotid as the antibiotics did their job.
And of course, as you said the people in the waiting room with you every day that you get to know who are there with you for chemo or rads and are all somewhat in the same boat. Some are more serious cases than yours and some less but you all share the battle you are fighting against the evil disease-Cancer.
And there is part of the bonding with other patients and doctors and nurses, etc. that I can't explain but sometimes the cancer center just feels familiar and comfortable after a while. I even went back and visited the cancer floor where I spent so much time and to the radiation center and thanked all that I came in contact with and told them what a Blessing they were to me and all the other patients. I tried to let them know how special they are treating me and others like family. And I told them to extend my thanks to the folks on the other shifts that I couldn't get to see.

So there you have it another one of my long Blabbin Sessions.

Take Care-God Bless-Russ

ozymandible

Looking back to UCSF, I

Looking back to UCSF, I really did get very good care there.  I was such a mess after surgery I didn't think I'd ever be able to learn how to feed myself with the NG tube.  It all seemed so overwhelming but the nurses were very patient with me and by the time I got out I knew how to do everything but was sometimes too weak to do it all.  But most of the nurses were phenomenal and really took good care of me.  I will never forget Suzy Lee as long as I live.

 

 

wbcgaruss

Sounds Like

You had the same experience as me everywhere I went I had exceptional care, amazing people.

Take Care-God Bless-Russ

ozymandible

Still hurts sooooo bad to

Still hurts sooooo bad to swallow.  Can't really do much of anything by mouth except what is necessary to degunk mucous.  24\7 painkillers and periodic lidocaine applied to mouth.  Throat pain referring to ears sometimes.  Qtip with lidocaine if that gets too bad.

Looking forward to when throat heals enough not to hurt like this.  Very important to start again by mouth asap.  Trying not to sweat it too bad because I can still swallow water and it hasn't been too terribly long since I ate something solid.

The Vitamix was worth the money.  So far I have done watermelon, beef stew and potato soup in my tube.  I can't taste it but I can feel it as a bit more energy to wash up dishes and do small chores so gotta be good for me.

My neck only has one spot oozing that's already starting to heal.  Sore throat and extremely painful swallowing is my main gripe now.

ozymandible

Oh and I forgot to say-- can

Oh and I forgot to say-- can't wait until I can drink more water.  Breath smells like dead snails because not able to drink enough by mouth to wash it out and nothing in there but phlegm.  ?

wbcgaruss

ozymandible said:

Oh and I forgot to say-- can

Oh and I forgot to say-- can't wait until I can drink more water.  Breath smells like dead snails because not able to drink enough by mouth to wash it out and nothing in there but phlegm.  ?

ozy Continue

Swallowing exercises while you are eating less, every little bit helps.
The fact you are swallowing water is giving your swallowing some activity so you should not have a swallowing problem.
Also if you have snail mouth and a lot of phlegm and thick saliva use the baking soda and salt rinse often and stay ahead of it.
You will feel much better.
Here is a link to Memorial Sloan Ketterring Cancer Center mouth care during and after cancer treatment and it has the recipe for the rinse.
https://www.mskcc.org/cancer-care/patient-education/mouth-care-during-your-treatment

Take care-God Bless-Russ

ozymandible

Thank you Russ.

Thank you Russ.

wbcgaruss

ozymandible said:

Thank you Russ.

Thank you Russ.

You Are

Very Welcome ozy.

Take care-God Bless-Russ