Need Advice

my boyfriend will be three weeks post treatment this coming tuesday...his mucous is still horrible.  he also is still sleeping for most of the day.  he only gets up to put nutrition in the tube, cough up stuff and use the bathroom.  i am not sure if at this point he should be at least awake for more of the day and able to do a little more for himself.  i have to really encourage him to get in the shower every few days - he at least has kept up with his teeth!  when i am at work he may get one can of nutrition in and then we have to catch up when i get home. 

right now i am not sure if i should be encouraging him to do a little more for himself...quite frankly i am exhausted from the combination of his care and working 6-7 days a week.  i dont want to push him if he really isn't capable of it at this point.

so...my question is...what are most people's days looking like 3 weeks post rad?

~meesh

My days were pretty much like his, eat sleep, pee, sleep,shower, sleep.

My wife had to really ride me to get me to eat (via PEG tube) too. Truth was, I felt so crappy I really had nointerest in it.

He's at the point though, where he should start feeling a little better, and be willing to do more about getting better. Maybe give him another 2 weeks, but not much longer. You could ask the oncologist to talk to him at his next visit if thats soon enough.

Good luck, and Best wishes,

Mike.

Meesh,

            As Mike mentioned, your boyfriend should be nearing the stage that he would want to get back to normal. I felt that mental attitude was allot with fighting this cancer.  I got up and showered each morning to feel fresh and clean the area around my PEG . 

           Nutrition is very important, so is allot of water. Exercise, no matter how small is important. Just walking to the end of the block and back felt good to me. As I mentioned in another post. You have to say to yourself, okay cancer, you knocked me down, but I am back up and dusted myself off, I'm getting on with my life.

           I hope he starts feeling better soon, it isn't easy, get out of bed and start watching some TV, home repair shows, anything. After watching the home repair shows, I wanted to fix something, got me tinkering around the house.

           My best to everyone

thank you for the advice...i won't feel guilty anymore for prodding him along...

funny you should mention watching home repair shows...we are not tv watchers (we don't have cable and get all of 2 stations!) but when i got home from work yesterday he said that he stayed awake and watched some home building things on public tv!!  he had also had finished up with his feedings for the day.  this morning he got up and prepared his own "breakfast". 

perhaps things are looking up...we see the oncologist tomorrrow and i will ask him how much he should expect to be doing right now.

again...thanks for helping me get some perspective on all this.

~meesh

On 5/11/2008 meesh wrote:

my boyfriend will be three weeks post treatment this coming tuesday...his mucous is still horrible.  he also is still sleeping for most of the day.  he only gets up to put nutrition in the tube, cough up stuff and use the bathroom.  i am not sure if at this point he should be at least awake for more of the day and able to do a little more for himself.  i have to really encourage him to get in the shower every few days - he at least has kept up with his teeth!  when i am at work he may get one can of nutrition in and then we have to catch up when i get home. 

right now i am not sure if i should be encouraging him to do a little more for himself...quite frankly i am exhausted from the combination of his care and working 6-7 days a week.  i dont want to push him if he really isn't capable of it at this point.

so...my question is...what are most people's days looking like 3 weeks post rad?

~meesh

Is rad    meaning radiation.   I had radiation treatment for cancer and it was no big deal.  So, I wondering what this is.  I'm sure I missed out on a previous message, but I don't know how to get back to one.

Anyway, sounds like he is turning the corner.  I wish you both continued Good Luck!

Yes, rad is radiation. Where were you radiated? Everybody reacts differently to it and it may not be so bad in most parts of the body but in the head and neck area it's absolutely terrible. 2nd and 3rd degree burns in the throat, mucositis (it's much worse than it sounds), constant pain, the inability to swallow even saliva, damage to the mouth and gums (blisters, thrush), permanent damage to salivary glands (saliva is a very underrated fluid, you don't know how much you need it until you lose it), etc... Many people (myself included) lose the ability to swallow and have to relearn it. Thankfully most ill effects are temporary and the permanent ones can be dealt with.

I hope I didn't scare any newbies. It's always good to hear someone who goes through it easily. It gives the newly diagnosed some hope that it won't be so terrible for them.

Good luck.

Joe 

Meesh:

My husband (nasopharyngeal stage four) was much the same following treatment, but I'm not as nice as you.  I rode him a lot.  Fortunately, he is used to my overbearing personality and took it well.  I was never unkind, but I did push a lot and often thru and post treatment.  By week three post treatment he began to turn around and was eating by mouth mostly.  It seemed to happen overnight. 

Then, they hit him with adjuvant treatment number one and boom, same crap all over again.  Poor guy was devastated, as well he should be!   He is today on week three post adjuvant number two and has turned a positive corner again. 

So, hang in there and push a bit but don't shove.  :)  His ENT told me in the very beginning to encourage the use of anti-depressants and anti-anxiety drugs.  We were never opposed to this as I believe it is well warranted during H&N cancer treatments.  He never used them, but didn't get to that point.   

Bottom line - we are all different and have different experiences.  Keep track of his mental state now more than ever.

he has been taking ativan at night to help him relax and sleep.  he has been on adderal for ADD for years...and hasnt taken it through his radiation treatment.  i am encouraging him to get back to taking it...i think it helps him stay focused and motivated.

he did a little more for himself today and actually asked if after his doctors appt tomorrow i would take him for a drive to see the ocean!!!!

of course i said YES!