Finished 28 of 33 rads I see a peg coming

tgcap
tgcap Member Posts: 14
in Head and Neck Cancer #1

We have not posted in forever. No excuses just trying to "geter" done. However we read all the posts and you guys have been so wonderful supporting those who need support and giving information straight from real experiences. That is a huge help. 

Brief update hubby finished 7 weeks of chemo. The deadly Erbitux Rash did go away. Took awhile. He really tolerated chemo fairly well.

now, as our radiation doc said, this is where the rubber hits the road. Hubby was about 4 weeks into rad. He had over come must of the anxiety of the mask, with Ativan before treatment. Then the throat started getting sore and ulcers. We have followed every instruction religiously. Baking soda mouth washes, throat and mouth excersises, emaculate mouth care. I hate to see what would have happened if we didn't. I think looking back those  must  be done faithfully. From then on things got worse. he could still eat a little until the 23 treatment with only 10 left you think he should make it. Thick slimy mucous that put the Musinex slugs to shame. Red,bleeding throat,no appetite or taste. only get sips of water down and then "dry" heaving your guts out with mucous. This isn't for sissy's. I don't ever want CA, but I can tell you if I had to choose. a CA it would not be H&N. 

Now with 5 to go WE are in the hospital due to fever and pneumonia. Not aspiration, that for me is up for debate. One good thingis before   rad he is be getting IV ativan which will help the panic attacks now coming from the mucous plugs logging in his airway. As an inpatient they can proviide it given this way which works better. He had to stop 3 times but after an hour of trying,the techs were fabulous he did it. The mask is pushing on his wind pipe causing to much pressue.

We have also made the decision to have the feeding tube placement. That is going to be done monday. Our date for finishing is to be Dec 19,2013, after the 33rd and last radiation. We have been away from home since August, when we were having a beer in Gleenwod Springs, CO. enjoying our summer, when the doc called and changed our lives forever. 

Our next quest will be getting home and set up with feeding. I bought cases of boost vhc and now they recommend isosource. Oh, well we have learned that might change too, so just wait and see.  Thks again to all. I will post again I am sure.

Merry Christmas to all of you.

 

 

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
    getting close

    tgcap,

    Those last few weeks can be terrifyingly terrible.  I had a utility room sink dedicated to my new found habits of coughing, choking, rinsing, spitting and dry heaves.  I have said it before, but the noise we make is enough to dial 911.  The caretakers really do have to have tough skin.

    Use the PEG as much as needed, try to relax and recover.  Also, keep sipping water and swallowing.  The 19th will be here soon and this will be behind you.

    Hang in there,

    Matt

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    you are about to begin to see the light

    at the end of the tunnel. Yup, it can be pretty rough at the end, but better days will come.  Don't get rid of the Boost VHC, just because someone prefers another product. The boost is a high quality product and will work just as well. 

     

    The mucus is simply a huge problem for some.  People who haven't been through this cannot understand how pernicious it is.  I likened it to coughing up banjo strings.  That will last awhile after rads, but then it improves.  Keep the faith, you will get there.

     

    Pat

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Almost there!!

    you're almost in the single digits, and the countdown will be on!  Getting the PEG tube will be a blessing, as he will only have to swallow enough per day to keep his swallower going.....everything else can go down the tube...I was given Amifostine during rads to protect my saliva glands....don't know that it did so much for that, but it did protect me from the mucous, for that I'm grateful!!

    As Pat said, keep that Boost VHC on hand.....I kept a case of it around for 3 months after treatment....Not everyday is a good day for eating afterwards, and it is a quick way to get in 540 calories either via the tube or drink.  It was darn handy in the 8 weeks or so following rads. 

    Glad you checked in....stick closer to us....we always wonder where people go when they disappear!!!

    p

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #5
    The tube is your friend

    For all of the negatives that go with a feeding tube, the positives far out weigh them.  If he can get in the mindset that food is medicine, then the tube is just another way to get the meds he needs.  If he thinks of the tube as a step in the wrong direction and that he's getting cheated from eating real food, then its becomes a much bigger battle.  For almost all of us, the tube was temporary, so let's hope that's the case for him, too.

    Mike

     

Discussion Boards