3 weeks post treatments update: how long did it take for you to really start feeling better?

RodgerM

Hi,  The journey continues ...

Last 2 weeks of treatments were brutal.  Ill spare you the specifics, but i can tell you fentanyl and oxy were my friend. Post treatment recovery started out slow especially with the continued mouth sores and sore throat.  3 weeks post treatments I am still experiencing some new mouth sores and sore throat and lots of  fatigue.  I think I could also be experiencing some cancer depression , having a hard time enjoying anything.   I was hoping I would be further along by now , but radation is the gift that keeps giving I guess.  All in all I've done well lost about 25 lbs didn't need a feeding tube and have been able to eat food except for 2 days during treatments, taste buds are gone for now and the new mouth sores and soreness making the desire to eat difficult.  So I keep telling myself that it could be a lot worse hoping that will keep me grateful and provide me the needed Patience to help me thru this stage of cancer.   I am so looking forward to my first slice of pizza ?.  So I ask how long post treatment did it take you to start really feeling better mentally and enjoying food and drink again?  
Any suggestions on what we can do to improve things during this recovery stage?

Thanks Rodger 

 

 

DarcyS

6 weeks

It took about 6 weeks before my husband started to slowly eat some solid foods and begin to feel better. He had stage 4 ssc of the piriform sinus T1N2bM0.  6 weeks of chemo, then 50 radiation treatments with concurrent chemo. He was encouraged by his care team to increase his protein intake, ensure and jevity for him,  and this would speed up recovery.  Though this was very difficult in the first weeks after treatment, it did help.  Hang in there and take care of yourself, time does heal.

The Cincinnati Kid

33 rads and 3 chemos,

33 rads and 3 chemos, finished 1 week ago and though I'd like to say getting better, I cant. Neck burn getting worse and although the mouth / taste isnt getting worse it isnt improving either.

Cant wait for the day when a hunk of cow and a glass of red is edible and tastes good....heck, ill take tastes ok.

RodgerM

The Cincinnati Kid said:

33 rads and 3 chemos,

33 rads and 3 chemos, finished 1 week ago and though I'd like to say getting better, I cant. Neck burn getting worse and although the mouth / taste isnt getting worse it isnt improving either.

Cant wait for the day when a hunk of cow and a glass of red is edible and tastes good....heck, ill take tastes ok.

35 rads and 5 chemo's ..

35 rads and 5 chemo's ...Sorry about you neck.   The Docs prescribed me burn kit had some guage and saline with some cream in it kit, healed in about a week. I went off treatments with 6 rads to go l, my burns where so bad, then resumed And finished. yea i am dreaming of some pizza  , I am missing the variety as well as the flavors of food so much right now.  

 

 

tbret

Roger, I didn't eat for quite some time after treatments.  I was drinking my meals and I'm sure that delayed my recovery.  I don't *know* that, but it feels right.  When I finished my last radiation my doctor said, "Now you can go home and curse me for the next two weeks." 

I had NO idea what she was talking about, but I learned.

Yeow!

My last radiation was the day before Thanksgiving (2016) and I didn't "feel better" until the end of December or early January.

I couldn't climb steps or balance on one leg for months.

I was "recovering" by April 2017, but didn't feel "good."

By New Year's Eve 2017 (yes, the next day being 2018) I was feeling REALLY much better.

I had heard from others it would take about a year to feel "normal" again and they were right.

NOW - having said that, there are people here who jogged (exercised) through their entire course of treatment.

I guess we all heal at our own pace <no pun intended> with that pace depending on many variables.

Really *enjoying* food took months for me.  Eating food - I was back on almost entirely solid real food by sometime in June of 2017.  Dry foods (white meat chicken, pork loin) were almost impossible for a long time.  What I enjoyed, though was all the stuff that's "bad" for you.  Fried fish, fried dark meat chicken, sausage (particularly spicy).   Mostly, early on, I was eating for maintenance instead of pleasure.  About the only two things I really liked were typical: sugar and salt.

Drinking for pleasure was faster.  Coffee, tea, green tea, seriously sweet lemonade, Pellegrino fizzy water - those were pretty fast.  Really acidic things (real fruit juices, for instance) took much longer.

DON'T DISPAIR – It’ll happen when it happens and you will barely remember what “now” was like.

I understand the depression settling in.  A lot has changed.  I know.  People changed while you were "busy" and the things you did for fun have changed and the combination of this pandemic and cancer treatments, too.  It's horrible.  It IS horrible.  It would be STRANGE and UNUSUAL for you to feel "good" about anything.  I'd worry about you if you weren't a little down.

Making things better --- gosh, I didn't recover in a pandemic, so I had options, but I guess I remember going for walks with my wife and daughter helped lift my spirits just by getting out of my chair and out of the house (I worked on the computer from home, so I *really* needed to escape). I enjoyed jigsaw puzzles with my family, but I couldn't concentrate for very long.

<chuckle> my son took me to an Alice Cooper concert to try to lift my spirits <smile>  That really did happen.  I hadn't been to an Alice Cooper concert since "Welcome To My Nightmare."

I could look back at it as "fun" now, but at the time I didn't know if I could make it through a concert.

I chose a new pair of headphones and a new music service subscription and an Audible audiobook membership and I went for drives.  I know this sounds morbid, but it wasn't; my wife and I went to graveyards and looked-up long dead relatives in about a three hour radius.  It was something to do together when I couldn't do much.

If I can think of something else, I'll be back to add it.

 

 

 

RodgerM

tbret said:

Roger, I didn't eat for quite some time after treatments.  I was drinking my meals and I'm sure that delayed my recovery.  I don't *know* that, but it feels right.  When I finished my last radiation my doctor said, "Now you can go home and curse me for the next two weeks." 

I had NO idea what she was talking about, but I learned.

Yeow!

My last radiation was the day before Thanksgiving (2016) and I didn't "feel better" until the end of December or early January.

I couldn't climb steps or balance on one leg for months.

I was "recovering" by April 2017, but didn't feel "good."

By New Year's Eve 2017 (yes, the next day being 2018) I was feeling REALLY much better.

I had heard from others it would take about a year to feel "normal" again and they were right.

NOW - having said that, there are people here who jogged (exercised) through their entire course of treatment.

I guess we all heal at our own pace <no pun intended> with that pace depending on many variables.

Really *enjoying* food took months for me.  Eating food - I was back on almost entirely solid real food by sometime in June of 2017.  Dry foods (white meat chicken, pork loin) were almost impossible for a long time.  What I enjoyed, though was all the stuff that's "bad" for you.  Fried fish, fried dark meat chicken, sausage (particularly spicy).   Mostly, early on, I was eating for maintenance instead of pleasure.  About the only two things I really liked were typical: sugar and salt.

Drinking for pleasure was faster.  Coffee, tea, green tea, seriously sweet lemonade, Pellegrino fizzy water - those were pretty fast.  Really acidic things (real fruit juices, for instance) took much longer.

DON'T DISPAIR – It’ll happen when it happens and you will barely remember what “now” was like.

I understand the depression settling in.  A lot has changed.  I know.  People changed while you were "busy" and the things you did for fun have changed and the combination of this pandemic and cancer treatments, too.  It's horrible.  It IS horrible.  It would be STRANGE and UNUSUAL for you to feel "good" about anything.  I'd worry about you if you weren't a little down.

Making things better --- gosh, I didn't recover in a pandemic, so I had options, but I guess I remember going for walks with my wife and daughter helped lift my spirits just by getting out of my chair and out of the house (I worked on the computer from home, so I *really* needed to escape). I enjoyed jigsaw puzzles with my family, but I couldn't concentrate for very long.

<chuckle> my son took me to an Alice Cooper concert to try to lift my spirits <smile>  That really did happen.  I hadn't been to an Alice Cooper concert since "Welcome To My Nightmare."

I could look back at it as "fun" now, but at the time I didn't know if I could make it through a concert.

I chose a new pair of headphones and a new music service subscription and an Audible audiobook membership and I went for drives.  I know this sounds morbid, but it wasn't; my wife and I went to graveyards and looked-up long dead relatives in about a three hour radius.  It was something to do together when I couldn't do much.

If I can think of something else, I'll be back to add it.

 

 

 

Thanks, well I didn't jog

Thanks, well I didn't jog thru treatments?.  Just concerned about this lagging sore throat pain, especially during and after eating.  Probably the sore throat more noticeable after I got of the meds.  Mouth sores seem to have stopped and I feel like maybe I can taste a little bit of my coffee this morning.   Sweets forget it I cant taste anything.  Dieing for some good chocolate cake along with so much more...  

Thanks  for the in site.

 

wbcgaruss

tbret said:

Roger, I didn't eat for quite some time after treatments.  I was drinking my meals and I'm sure that delayed my recovery.  I don't *know* that, but it feels right.  When I finished my last radiation my doctor said, "Now you can go home and curse me for the next two weeks." 

I had NO idea what she was talking about, but I learned.

Yeow!

My last radiation was the day before Thanksgiving (2016) and I didn't "feel better" until the end of December or early January.

I couldn't climb steps or balance on one leg for months.

I was "recovering" by April 2017, but didn't feel "good."

By New Year's Eve 2017 (yes, the next day being 2018) I was feeling REALLY much better.

I had heard from others it would take about a year to feel "normal" again and they were right.

NOW - having said that, there are people here who jogged (exercised) through their entire course of treatment.

I guess we all heal at our own pace <no pun intended> with that pace depending on many variables.

Really *enjoying* food took months for me.  Eating food - I was back on almost entirely solid real food by sometime in June of 2017.  Dry foods (white meat chicken, pork loin) were almost impossible for a long time.  What I enjoyed, though was all the stuff that's "bad" for you.  Fried fish, fried dark meat chicken, sausage (particularly spicy).   Mostly, early on, I was eating for maintenance instead of pleasure.  About the only two things I really liked were typical: sugar and salt.

Drinking for pleasure was faster.  Coffee, tea, green tea, seriously sweet lemonade, Pellegrino fizzy water - those were pretty fast.  Really acidic things (real fruit juices, for instance) took much longer.

DON'T DISPAIR – It’ll happen when it happens and you will barely remember what “now” was like.

I understand the depression settling in.  A lot has changed.  I know.  People changed while you were "busy" and the things you did for fun have changed and the combination of this pandemic and cancer treatments, too.  It's horrible.  It IS horrible.  It would be STRANGE and UNUSUAL for you to feel "good" about anything.  I'd worry about you if you weren't a little down.

Making things better --- gosh, I didn't recover in a pandemic, so I had options, but I guess I remember going for walks with my wife and daughter helped lift my spirits just by getting out of my chair and out of the house (I worked on the computer from home, so I *really* needed to escape). I enjoyed jigsaw puzzles with my family, but I couldn't concentrate for very long.

<chuckle> my son took me to an Alice Cooper concert to try to lift my spirits <smile>  That really did happen.  I hadn't been to an Alice Cooper concert since "Welcome To My Nightmare."

I could look back at it as "fun" now, but at the time I didn't know if I could make it through a concert.

I chose a new pair of headphones and a new music service subscription and an Audible audiobook membership and I went for drives.  I know this sounds morbid, but it wasn't; my wife and I went to graveyards and looked-up long dead relatives in about a three hour radius.  It was something to do together when I couldn't do much.

If I can think of something else, I'll be back to add it.

 

 

 

tbret Thanks For

Your description of recovery I can relate to much of it as my recovery was similar. It does really beat some of us up more and it takes a couple of months to feel decently in shape again. I finally did start eating but as you say your taste is off and slowly comes back to some percent of taste of course varying per individual. I was eating pretty good for a while and then suddenly got a piece of turkey from a sandwich caught in my throat and had to go to the hospital to have it removed. I got a total of 4 dilations after that which helped my swallowing a lot. Take Care-God Bless-Russ

Jimbo55

35 Rads and 3 Chemos

For me, I woke up one morning about 3 weeks out from treatment and thought to myself, wow I feel a little better. Not that I felt great or even good, but to me it was a teensy noticeable improvement that morning from the previous days and weeks. And it was a slow but steady gradual improvement from that morning on.

Getting the taste back took longer, but eventually that all came back, fortunate me. I remember my first bite of pizza post treatment. Some friends came over and brought pizza with them. It smelled sooo good. I took one bite and it tasted like stale cardboard. The first things I could really taste were radishes and onions.

My suggestion to help with the fatigue is to try to get some exercise, even just a walk around the block. Try to increase it bit by bit. You need to begin to build your strength back up. This will help with the fatigue. And just getting out and doing something, anything really, even something as simple as taking a stroll down the street, can work wonders on the mental aspect.

Stay strong and cheers!

motorcycleguy

Rodger,

It's a tough time, because you've gone through ALL of that treatment process, and you want nothing else, but to get back to a sense of NORMAL!

The good news is that you will get there .... the bad news is that it takes a bit of time.

I could eat very limited food a week or two after treatment. I remember when I could FINALLY eat some normal food (chicken wings and beer) ... about 3 months later.

When you're going through it, it feels like the challenge will last forever. Then, it starts to come back - pieces at a time.

Suddenly, you realize you're normal again, and enjoying simple things that you once took for granted!

I wish you the best!...

mg

Logan51

As long

as it takes, Rodger. Everyone is different to varying degrees with the C tx for H&N. I returned to work a month after my last Rad session, and was still using my Feeding Tube. Did not have near the energy before, of course, but that gradually increased. As a metalworking Inspector, I did have to walk a lot around the factory for exercise. But that's me, post-tx, and everyone's C is a little different as is the application of Rads and Chemo. Good luck, and know better times are ahead.