Temporary setbacks or forever symptoms?

AnotherSurvivor

I'm two years post, and

I'm two years post, and finding my condition stabilized at six to nine months post, and now doesn''t change much.  I have thicker saliva and pretty much have xylimelts stashed in all rooms and cars.  I have numbness in the area that got radiation burned, but can minimize that by wearing scarfs and keeping it warm.    My jaw muscles on my radiation side need massage and stretching daily, and if I neglect that I pay when I try to bite in to something like a sandwich or apple.  Taste is mostly back, but some things don't quite taste the same.  I used to love hot Korean Kimche and now just find it painful.

My weight is stable, but I monitor it fanatically and ramp up diet and exercise if I gain a pound or more and it sticks around for more than a day.  I'm 45 pounds under start-of-treatment and intend to stay that way.   The biggest problem tho, is as I exercise more the extra pound comes in more frequently, and my level of exercise is up beyond pre-treatment, so my weight battle that had been waged for decades is still going.  My wife, who also battles weight but has not had the benefit of cancer-starvation-therapy, sort of hates me because she is much more diligent, and diet and exercise just keep things where they are.

Mental funkiness is a different story.  I'm just not interested in some of my old activities.  I have been having a pretty rambunctious retirement for the last ten years, eight of those pre-treatment.  I hesitate now because I'm just not as confident, and there are things like whitewater rafting where hesitation will get you in trouble.  I should be planning trips and trying to bargain with friends that got lucky on permits, and nada.   So I've maybe moved from the "young old" to "active elderly".  My mountain bike sits on its hooks, and I rack up street miles on my much more mellow e-bike.   I used to make a point of skiing blacks for a day, just to show I still can.  This year I decided to not bother, have worn ruts in my favorite green trails.  Aspen got 5 ft of snow last week, and I'm sitting in Denver trying to decide if I should do something about it, but will probably work in the garden instead.

I have recovered and moved on, but I definitely know I got hit.

AnotherSurvivor

My part of the west seems to

My part of the west seems to see two kinds of river years: So dry you constantly get stuck on things, So wet being on-river before July looks like suicide.  This year is starting to look like suicide.  I don't think I can swim Class III-IV rapids like I used to, so I probably just ought to start handing over equipment.  But, my son is back east and rafting there, and my son-in-law is here and just getting started, so I am the neutral site for gear storage.  Mentally I can't quite accept that it's over, but when you start looking at calendars it becomes sort of obvious; next year I will be 68.  The best boater I know quit at 73, but he was so much better than me.  Being an adult is just sooo boring.

ERomanO

AnotherSurvivor said:

I'm two years post, and

I'm two years post, and finding my condition stabilized at six to nine months post, and now doesn''t change much.  I have thicker saliva and pretty much have xylimelts stashed in all rooms and cars.  I have numbness in the area that got radiation burned, but can minimize that by wearing scarfs and keeping it warm.    My jaw muscles on my radiation side need massage and stretching daily, and if I neglect that I pay when I try to bite in to something like a sandwich or apple.  Taste is mostly back, but some things don't quite taste the same.  I used to love hot Korean Kimche and now just find it painful.

My weight is stable, but I monitor it fanatically and ramp up diet and exercise if I gain a pound or more and it sticks around for more than a day.  I'm 45 pounds under start-of-treatment and intend to stay that way.   The biggest problem tho, is as I exercise more the extra pound comes in more frequently, and my level of exercise is up beyond pre-treatment, so my weight battle that had been waged for decades is still going.  My wife, who also battles weight but has not had the benefit of cancer-starvation-therapy, sort of hates me because she is much more diligent, and diet and exercise just keep things where they are.

Mental funkiness is a different story.  I'm just not interested in some of my old activities.  I have been having a pretty rambunctious retirement for the last ten years, eight of those pre-treatment.  I hesitate now because I'm just not as confident, and there are things like whitewater rafting where hesitation will get you in trouble.  I should be planning trips and trying to bargain with friends that got lucky on permits, and nada.   So I've maybe moved from the "young old" to "active elderly".  My mountain bike sits on its hooks, and I rack up street miles on my much more mellow e-bike.   I used to make a point of skiing blacks for a day, just to show I still can.  This year I decided to not bother, have worn ruts in my favorite green trails.  Aspen got 5 ft of snow last week, and I'm sitting in Denver trying to decide if I should do something about it, but will probably work in the garden instead.

I have recovered and moved on, but I definitely know I got hit.

My furnace humidifier is

My furnace humidifier is working again and the indoor humidity is now around 39%.  That makes a huge difference! It was mostly my throat that would get dry and a little irritated, but that doesn't seem to be the case now.  We'll see how it goes from here.  I'll still run the humdifier in my bedroom at night all year long... and use Xylimelts.

I lost 30 lbs last year while getting treatments (and a few weeks afterwards), but I've gained most of that back after 8 months.  So I'm back to "the struggle".  I think I'm still down a little from where I was last year at this time, so if I can drop just a few and hold it I'll be just fine.

My main interest is playing music.  I play guitar in a couple different bands and play many duo/trio gigs as well.  The neuropathy - before Gabapentin - was killing me at first.  It kind of hurt when I played and the vibrations from the strings were unbelievably annoying.  But since I started taking the Gabapentin I feel much better.  In fact, I hardly even notice the neuropathy when I'm out playing. There have been a few nights where it was killing me after I got home, but so be it, if I'm just going to bed.  I don't know how many years I'll be able to keep this up, and I know there are a lot of musicians that are healthy that give it up because it's too much effort.  But so far I still get energized from it so I want to go as long as I can.

I've thought about getting some friends, and maybe my kids, and go whitewater rafting again.  But it's been over 30 years since I went, and I'm not so sure I'd be up for it now.  Juat hitting the bike paths this summer will be fine with me.  It'll be mostly about water management (how much will I need and how much can I carry).  Last year, about 12 weeks post treatment, I went on 3 bike rides, about 15 miles each, 2 days apart, and each time I increased my pace a couple mph avg.  On day 3 it was still slower than what I was doing the previous year, but it was just nice to be outside and getting a little exercise.  Hey, I'll take what I casn get.

One of the nurses that was checking me in when I made one of my weekly stops to visit my docs during treatments told me "It won't be long until this is all just a bad memory.  I think she was completely wrong, and there's a song from the 80's that sums it up - "There is always something there to remind me".

Drivingdaisy

To All Suffering, Welcome to Treatments After Effects

Jan 2016 was My turning point.  Went in for Allergies/sinus issues to an ENT.  While there mentioned an extremely small red spot, Nickle size, in the left back of My Throat that I asked every Dr & Dentist I saw what was it?  3 yrs I asked All the same response......Nothing, don’t worry about it.  So for 3 yrs I traveled Europe, ate what I wanted, drank what I wanted, smoked.  But the ENT thought different.  Took a scraping for biops, came back HPV +, SCC, stage 2-3, No lymph nodes involved, left tonsil only.  Next thing ASAP into treatment, not at a top center, never had time to research, or learn more since did not get much info from My Rad or Chemo Onocologis, just Do it surprised they were not wearing Nikes!  Now I am I formed after they did All their damage.  So angry.  Tried to correct the Salivary Duct problem on My own, unfortunately all I got was Chemo Saliva.  All I have heard since treatment was you “ Have Rad/Chemo damage”.  Welcome to your new life!  Yes, I am very angry,  Can’t get over NO Saliva, NO Thyroid, all damaged....why.  They just wanted to boost their records with another Survivor, which I never call My self, I’m a Warrior!!  But No one wants responsibility for what they caused.  Now I have a very bad, below average Sodium issue.  The more I drink for dry mouth drives My Sodium down.  But instead of helping with a simple IV Infusion bag, I am forced to eat a ton of Sodium pills, & Sodium enriched process food.  Ask for help, but they all refuse...go to the hospital where they lock Me up 3 days feed the wrong doses, “liability issues”. & I get worse & pay for this abuse.  I’m so done, if I have more Cancer than let Me die instead of another stroke since you would not help Me that time.    Always My responsibilit, but I didn’t do this you did, so HELP.  Ready to get a lawyer & Sue, their big fear but not what they did but that you won’t help.  Just watch Sodium levels.  Surprising HOW Important they are & Chemo can change a normal person into an abnormal one!

ruben1

neuropathy

I too have it,  and it sucksMy ONC  says it's here to stay,  but then lets me know that I am also alive so thats not a bad trade off.   I deal with it,  it hurts some days,  I take GABA  also  but I also need a neuropathy glove and I use a perafin wax for my hands  somedays,  they get sooo cold.  Dry mouth is terrible somedays more than others  but gum and water bottles are everyday life now,  this is my new normal,  I am  not the same,  that person is gone and adjusting to this person will take time,  I am 1 year survivor so far and I just look forward to making it 2  and so on...It's hard to explain to people the effects treatment takes on your body,  my wife looks at me somedays and she is so sad because I struggle,  but I tell her it will be okay... treatment does effect all of us differently but I am happy for all of us that made it through... 

ERomanO

ruben1 said:

neuropathy

I too have it,  and it sucksMy ONC  says it's here to stay,  but then lets me know that I am also alive so thats not a bad trade off.   I deal with it,  it hurts some days,  I take GABA  also  but I also need a neuropathy glove and I use a perafin wax for my hands  somedays,  they get sooo cold.  Dry mouth is terrible somedays more than others  but gum and water bottles are everyday life now,  this is my new normal,  I am  not the same,  that person is gone and adjusting to this person will take time,  I am 1 year survivor so far and I just look forward to making it 2  and so on...It's hard to explain to people the effects treatment takes on your body,  my wife looks at me somedays and she is so sad because I struggle,  but I tell her it will be okay... treatment does effect all of us differently but I am happy for all of us that made it through... 

I'm 3 months behind you as I

I'm 3 months behind you as I will reach the 9 month mark tomorrow. I'll go visit my docs on April 4 and don't expect anything to have changed.

Yes, the neuropathy really stinks, but I'm starting to realize that it's only a percentage of the day when it's actually bothersome, and that percentage isn't all that high... maybe 10-15% of any given day.  When I'm active I don't notice more than a light buzz in my hands and toes (mostly the big toe on my right foot).  When I sit down to watch a movie I'll notice more of the sharp needle jabs and occasional pain in some joints.  Sometimes I'm feeling more when I go to bed, but once I fall asleep it's a non issue, and I usually feel pretty good in the mornings.  I'm still trying to figure things out, but overall I think I'm dealing with it just fine.  If it doesn't get any worse I'll be fine.  I really wasn't expecting it because I asked my oncologist if the cisplatin will cause heuropathy, and his reply was "It shouldn't", but I know there are no absolutes in this game (as I found out).

I hear you loud and clear regarding gum and water bottles.  They have become a stape of life for me as well. I think the dry cold winter air made things worse, and the fact that my furnace humidifier wasn't functioning made it terrible.  The humifdifier is now fixed and that has improved the indoor air quite a bit.  I'm probably not helping matters by drinking 3 or 4 cups of coffee every morning and a couple (light) beers at night.  Both probably contribute to dryness, but I really enjoy them, so I'll just work around them.

You and many others here are fortunate to have a spouse to help you get through this.  I know it must be hard on your wife, but she is there with you and that must be some comfort.  My wife passed away 13 1/2 years ago and meeting someone new to share my life with was challenging before the big "C", but now I think it'll be damn near impossible. For now my hobby (playing music) keeps me busy, but that will go away someday and that's when I'll have to really step up to the challenge.

Take care