Previous Thread
Next Thread
Print Thread
#197689 12-12-2018 08:46 PM
Joined: Aug 2018
Posts: 345
Likes: 8
ConnieT Online OP
Platinum Member (300+ posts)
OP Online
Platinum Member (300+ posts)

Joined: Aug 2018
Posts: 345
Likes: 8
we couldn't get him in for weeks to do the swallow test at any hospital and speech pathologist was horrified at how he wasn't even trying to swallow or eat and said it was very critical to get on this NOW. So she gave him the papers saying which exercises he was supposed to be doing the whole time. They asked if he did them over the last week.....he answered that he really hadn't done them too much. Now you all see what I'm dealing with! Even though he was scared to death, he barely made the effort. It's his life.

So they had him swallow a liquid mixed with starch first. That went down a little but he had so much mucus that it kind of stayed in his throat. They suctioned his throat. He is still dehydrated they told him again this week and it makes the mucus worse. Then he swallowed applesauce and a tic tac (to represent the pills he is swallowing each day to make sure they were actually getting into his stomach for his GERD). Both went well. He has to do the drop chin to swallow though as the muscles are weak from radiation.

Now he goes back each week for follow up on swallowing. I will say he is doing some applesauce. Not sure about doing the exercises. He's doing 6 boxes of formula and some water. He is having more energy now and starting to irritate me! I guess we will call that progress.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
I’m glad to know that he’s going back weekly for swallowing. It really is something that needs consistent work.

Just an aside, during one of John’s swallowing tests, the pill ( a real capsule) became lodged in his nose instead of going down. You should have seen the face of the SLP when she gave me the news. Of course, she assured me that it would eventually melt and so, no harm done. 😬


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: Aug 2018
Posts: 345
Likes: 8
ConnieT Online OP
Platinum Member (300+ posts)
OP Online
Platinum Member (300+ posts)

Joined: Aug 2018
Posts: 345
Likes: 8
oh my! I wonder how it got into his nose?

He is somewhat cooperative with these ladies. I told them I would drive the 2 hours every week if he was willing to do what they say. The medical people we have encountered in this journey have been beyond wonderful.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5