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PapaPaul's journey continues

PapaPaul's picture
Posts: 33
Joined: Jan 2013

Hi everyone! Again I need to apologize for not posting is such a long time. I have been checking in (almost) daily, however just haven’t taken the time to do any posting…Please forgive my laziness! Tomorrow (Monday) will be 15 weeks post treatment! I wish I could say that it went ok, but there were some setbacks and issues early on following treatment. Those were covered in my last post (April or May). Since then I am completely off my pain meds, my saliva and taste is at about 50%, although it comes and goes. Sweet and salty seems to have the greatest flavors. My energy level is the best it’s been since prior to my first surgery last November. But I still have a long way to go to get to feeling somewhat normal.  I was able to return to work the first week of June and will be able to begin traveling for work the second week of July. Needless to say, I am looking very forward to my first trip! During the last visit with my ENT surgeon, the doctor ran the scope up my nose and down the back of my throat. He said that even with the expected radiation changes in my throat, things were looking very good. He wouldn’t commit to whether those changes are permanent or not. I still have some soreness and a swollen feeling back there. Although it is still difficult to swallow some foods (anything grainy such as hamburger), I am not using the feeding tube at all (and haven’t for over a month now). I have an appointment on Tuesday to have the PEG removed. I will be happy to lose it, however am not really looking forward to the process of having it taken out (looks painful). This has been a long and tough (but doable) process. Improvement has been measured in months and the setbacks disappointing. However with all that, improvement does happen and strength does return. My turning point came when I finally decided that I had to increase my caloric intake. I went from 1000 – 1500 calories daily to 3000 daily. I took myself off the “drip feed” pump and went with the bolus feeding. This forced me to eat 3 times daily instead of staying tied to a pump 24/7. The next big change came when I was finally able to quit the pain meds (with doctor assistance and approval). I hated the way the meds were making me feel. The greatest milestone occurs tomorrow morning; I will have my first PET scan following treatment. I won't get the results until Tuesday. Probably will be a couple of sleepless nights for me. I hope this post is encouraging to all of you that have just recently started and or finished these treatments. Like I and several others have said, this is tough but very doable process. Hang in there and take each day one at a time. Celebrate any victories and small steps. Keep your head up during any setbacks. As we continue on this journey, those small steps will become milestones. This trip will make you a stronger person with a greater appreciation of the things that matter most (family and friends) in life. As always, I pray daily for all that are on this forum that our God will strengthen and comfort you during this trying time.

Posts: 1914
Joined: May 2012

You sound like you're moving ahead.  It's slow going, but all sounds wonderful !  I'll be keeping you in my thoughts for the upcoming scan.  Katie

CivilMatt's picture
Posts: 4303
Joined: May 2012


It is a delight to hear you on the positive side of post treatments.  It truly is success measured in inches.

Pop the PEG, no big deal, firm grip and pull (pop) a little belly juice squirts out and you are done.  Then you get a bucket of chicken from KFC and a Big Gulp and celebrate (or something like that).

Keep on healing,


phrannie51's picture
Posts: 4672
Joined: Mar 2012

right along!  Like everyone says....it's a slow process, but it's always a forward process even on the days it feels like you've taken a step backwards. 

Getting my PEG removed was a BIG deal, too.....I hated tucking that thing in to my pants, and having a bulge in everything I wore.  Like Matt said, it's no big deal getting it out.....hurts enough to make ya cuss, but only for about 30 seconds, then it's done (I did not cuss, just wanted to Smile)...


CherieLW's picture
Posts: 472
Joined: May 2013

It certainly is inspiring to read posts like this.  I'm a newbie and have come here for support to get my dad through his cancer.  I really enjoy reading posts like this one!  Glad you are making improvements and I hope you continue to heal fast!



Skiffin16's picture
Posts: 8286
Joined: Sep 2009

Looking forward to hearing nothing bt good news from you soon...



Posts: 839
Joined: May 2013

for sharing your update and such encouraging words!  I hope there is nothing but good news for you from here on out! 

debbiejeanne's picture
Posts: 3095
Joined: Jan 2010

welcome 2 the road of recovery!  i know things will continue to go forward.


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