My radiation recovery - 1 month

stevenpepe
stevenpepe Member Posts: 234
edited August 2016 in Head and Neck Cancer #1

Well, I'm happy to report it's been a whole month and 2 days since I completed treatment. It's gone quick but it hasn't been easy.

The first 3 weeks were pretty tough. Vomiting issues due to mucositis and those Boost/Ensure shakes I was drinking to maintain my weight. I've lost maybe 5 lbs and still look and feel the same. Last week, I ditched the Boost for veggie and protein shakes packed with all sorts of high calorie dense foods. My stomach tolerates them much better and they're healthier.

The fatigue was perhaps, the biggest issue, along with tongue sores. I was laid out on my couch for most of the day with my head feeling like it weighed 100 lbs. A walk down the hall felt like a marathon. I'm noticing a 2 step forward, 1 step back type of progress with the fatigue. It's much better now. Still there, but manageable.

I left work during the last week of treatments and stayed out for another 2 after that. The 4th week, I returned half days, then full days the following week. It was a bit rough even sitting at my desk, but here I am typing this report and feeling pretty good.

I still take a swig of Oxy if the sores bother me too much, but I'm pretty much done with the meds. They were a Godsend.

My biggest accomplishment to date: I was able to eat some solid foods for the first time last week. Not going crazy but I ate a bowl of rice almost pain free and had an apple yesterday. Cut up, of course but no pain in my throat. My taste is slowly coming back.

My oncologist is very optimistic. From the beginning, she didn't believe in PEG tubes and says I'm doing well, overall. I asked her about accupuncture for dry mouth and she recommended it. But only after 6 months because she insists I shouldn't need it. My saliva production will improve. She's been right so far, so I'm hopeful. In fact, I do notice a bit more production coming back.

Brushing my teeth is almost painless and back to normal now that the gum sores are healed. They disappeared rather quickly, most within 3 weeks. Mucous is much less now, also.

For those behind me, prepare for the worst conditions presenting after treatment ends. That's when everything really accumulates head on. You will most likely be out of work, so be prepared to take time. I didn't think that would happen since the treatments weren't affecting me terribly until week 6. Then, I knew I would need time off. You will experience what I call "radiation head". It's a condition where you're not quite right up there and it feels so damned heavy. That, in itself, is enough to lay you out. Seriously.

My first post treatment PET Scan is in mid September. I will post the good news when I get the results. Optimistic thinking.

Thankfully, the election season and HGTV kept me entertained for hours. 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    1m 2d post

    Steven,

    You do have radiation brain……..the election season.  Keep at it, you are improving right on the H&N plan, slow and steady.

    I had trouble enjoying eating for months, but was always trying.

    Matt

  • cardoza33
    cardoza33 Member Posts: 81
    I was wondering how you were

    I was wondering how you were doing, hadn't heard from you in a while. I'm glad you are improving so quickly.  It took me several months to get back to work.  Keep it up.

  • LiseA
    LiseA Member Posts: 266
    I would say for me, the first

    I would say for me, the first week and a half after, I was wiped out. No energy and no appetite.  The mucus caused some choking into the 5-7 week and the last two weeks have been better. Hope you have continued to improve. You'll be mad at me when I tell you that I had a gluten free pizza made at home (no sauce) with tomato slices, mushrooms, Gruyère cheese, ham and shrimp.  Could taste the ham, but nothing else.  Still, it made me feel good :-)

  • dygit
    dygit Member Posts: 40 Member
    edited August 2016 #5
    Congrats!

    Glad to hear you have made progress so quickly! Hoping mine goes well now that I just finished. One thing a nutritionist asked me the other say - she said how is your smelling? I told her that my nose was very sensitive and could pickup smells more than normal. She said that is a good sign for getting your taste back. We will see! The rad doc said I am left with 40% of my large right salvitory gland and all the others were fried. He was hopeful too..... Best to you Steven!

  • Kari2007
    Kari2007 Member Posts: 108
    dygit said:

    Congrats!

    Glad to hear you have made progress so quickly! Hoping mine goes well now that I just finished. One thing a nutritionist asked me the other say - she said how is your smelling? I told her that my nose was very sensitive and could pickup smells more than normal. She said that is a good sign for getting your taste back. We will see! The rad doc said I am left with 40% of my large right salvitory gland and all the others were fried. He was hopeful too..... Best to you Steven!

    Smell

    That is good news about the smell because this whole time I've been able to smell wonderfully. Sometimes even too well! 

    Kari

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    the nose knows

    A highly sensitive sense of smell is common to many H&N members

  • Kari2007
    Kari2007 Member Posts: 108
    CivilMatt said:

    the nose knows

    A highly sensitive sense of smell is common to many H&N members

    I wonder

    I wonder if our bodies try to make up for the lack of taste by heightening the sense of smell?

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited August 2016 #9
    dygit said:

    Congrats!

    Glad to hear you have made progress so quickly! Hoping mine goes well now that I just finished. One thing a nutritionist asked me the other say - she said how is your smelling? I told her that my nose was very sensitive and could pickup smells more than normal. She said that is a good sign for getting your taste back. We will see! The rad doc said I am left with 40% of my large right salvitory gland and all the others were fried. He was hopeful too..... Best to you Steven!

    Question for digit.......

    Aloha,  How did your Rad Dr. know or test for your Salivary Function?  I have asked but was told no real way, I would be the judge on how well I was gaining back saliva by a year.   I would love to know what is functioning and what wasn't.  I can go a week doing ok not horribly dry and bam, 2-5 days.......desert dry to the point of wanting to rip my lips off.  Drink so much water I could float.  Urrrrrg, Lisa

  • Fritz
    Fritz Member Posts: 106
    Congrats!

    Good for you Stephen.  I hope your recovery continues in a positive manner.

    Freddie

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    Smell

    Doing good Steve......keep it up!  My smell became more intense during treatment and is still going strong.  Wish my saliva was like that.  Had saliva throughout treatment and it went to practically nothing post-treatment. Let's hope by 1yr we all have saliva filled mouths chowing down favorites! 

  • dygit
    dygit Member Posts: 40 Member

    Question for digit.......

    Aloha,  How did your Rad Dr. know or test for your Salivary Function?  I have asked but was told no real way, I would be the judge on how well I was gaining back saliva by a year.   I would love to know what is functioning and what wasn't.  I can go a week doing ok not horribly dry and bam, 2-5 days.......desert dry to the point of wanting to rip my lips off.  Drink so much water I could float.  Urrrrrg, Lisa

    Salivary gland

    doc based it on the amount of rads that I was given on the right side of my neck (had no cancer there) and what was to be expected based on that. Seems depending on where the radiation is taking place will determine what happens to those glands.