little over 3 weeks out from last rad/chemo

Klynten
Klynten Member Posts: 29
in Head and Neck Cancer #1
Well Hello there!

What can I say, I made it through treatment. I was hospitalized a few times, had a pretty rough road but I am finally turning the corner and life is much better. All of my superficial burns have healed, I got my PICC out 2 days ago. I have been dry swallowing pretty well and am gonna start thick fluids today. My goal is 5 - 8 weeks and perhaps I can have my peg removed. But I am only 3 weeks out from last treatments and I will play it by ear. My fatigue is much worse than I thought it would be. I went out with a friend for 2 hours. Stopped by my old work spots and visited friends! I slept for 10 hours after that and still slept normally the next day. I was wiped out! I am currently waiting for SSDI to come through, I am confident I should meet criteria. I expect to go back to work in some degree, but think realistically I should give myself at least a year or more to get some of my strength back and really be on the road to recovery, really just focus on my family and my recovery! Make my recovery my job for the next 12 months.
I really thought I would never make it to this stage. I was so sick and dehydrated and dealing with terrible nausea and vomiting. I swear I got sicker with each dose of chemo and I think the concurrent radiation didn't help matters much. Plus I was having difficulty with my PEG tube, or maybe it was my digestion or something, we never found out. All tests came back negative, but I definitely couldn't get my nutrition for awhile r/t vomiting. I am so happy that I feel good enough to visit family, hang on the couch and do little things here. The mucositis continues to be my biggest issue and is the only reason now I have any retching. I am sleeping through the night for the most part and I am comfortable most of the time. My pain needs have decreased considerably, now I only take 10mg roxanol 2 times a day, which is much less than the 20mg every 4 hours I was requiring only a month and a half ago. Which has helped other issues, ie constipation ect. And some days I only take one dose of the Roxanol, just depends.

Anyways, I heard that the mucositis can last, in some regards, for quite awhile! My doctor also said that in the next 4 weeks it should get considerably better. I was wondering what others have experienced. Also I know I am in longterm survivors rearview mirror, as he put it, I am curious how your recovery is going this time. If anyone else wants to chime in about mucus and post treatment, leave a reply. Thanks so much for this forum, I have went through so many emotions and it's been rough. This forum gave me a outlet to vent and gave me people to connect with and share my experience and not feel alone. So from the bottom of my heart, Thank You.
Clinton

Comments

  • osmotar
    osmotar Member Posts: 1,006
    #2
    Job Well Done
    Job Well Done Clinton!!! Take the time to heal, both my onco and rad onco said too many times we feel better and try to jump right back into the life we knew before taking this cancer journey..and what happens is we become stressed , frustrated and it wears us down. we need to heal ...sooooo do what you can when you can , rest , stay hydrated and eat what you can...each day gets better.

    Linda
  • KTeacher
    KTeacher Member Posts: 1,103
    #3
    I'm a two timer
    I have gone through the battle twice since 2010. The first time the mucus did not last for a long time. I did have amifostine shots to help with saliva the first time also--not able to do it the second time around. We are all different. I do ok at night, don't have to wake up to drink, but very dry during the day. Energy was worse the first time, I did return to work about 3 months after rads finished, but was exhausted by early evening. I went back to work sooner this time, but I think that I am paying for it now. Hopefully I can get some energy back during spring break, if not I am thinking about early retirement.
  • robinleigh
    robinleigh Member Posts: 297
    #4
    KTeacher said:

    I'm a two timer
    I have gone through the battle twice since 2010. The first time the mucus did not last for a long time. I did have amifostine shots to help with saliva the first time also--not able to do it the second time around. We are all different. I do ok at night, don't have to wake up to drink, but very dry during the day. Energy was worse the first time, I did return to work about 3 months after rads finished, but was exhausted by early evening. I went back to work sooner this time, but I think that I am paying for it now. Hopefully I can get some energy back during spring break, if not I am thinking about early retirement.

    Mucositis
    Can definitely attest to the fact that this goes away. I watched my husband, Andy, go from standing over the sink most of his waking hours to carrying a "spitoon" everywhere to carrying a whole box of tissues everywhere to now not having to even think about mucous! Things get better and sometimes it takes months to look back and see progress...not days or weeks. Wish we had kept a daily journal of all the milestones because seeing progress is so encouraging! It happens! Hang in there!!!
  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    Way to go, Clinton!
    I'm in your rearview mirror so I can't help with any of your questions...but I did read your posts during your treatment, and knew you were having some tough times.

    This latest post gives me another shot of confidence...knowing that you did it, that things are getting better...and you sound darn near light-hearted.

    Congratulations on emerging from the "tunnel"!

    p
  • Klynten
    Klynten Member Posts: 29
    #6
    phrannie51 said:

    Way to go, Clinton!
    I'm in your rearview mirror so I can't help with any of your questions...but I did read your posts during your treatment, and knew you were having some tough times.

    This latest post gives me another shot of confidence...knowing that you did it, that things are getting better...and you sound darn near light-hearted.

    Congratulations on emerging from the "tunnel"!

    p

    In my rearview......
    phrannie51.....

    I am so much more optimistic and "light-hearted" than I was awhile ago. The meds and my depression during treatment was making me take things the wrong way when it came to my wife, she has been very supportive, sometimes a little short but she's dealing with a lot too... so if she can forgive me for some of the crap I've done and said, then I can definitely forgive her.

    Anyways, we come from the tunnel mentally and physically exhausted.. but it is amazing when you start to see the little things add up and you start to feel better. I absolutely wish you the best in your treatment and recovery.

    Clinton

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