Should Have Listened!!! :-( Need Help

I finished may last radiation on Thurs. 5/15!!

and as happy i was that it was over i am more scared now and very lost!

my treatments where 200 miles round trip from my home so everyday was very full just to get them done:

get up (tired)

have breakfast (2-3 scramble eggs if i could or some jevity in PEG)

 do my mouth (clean,floss,floride paste,paste on mouth sores)

get in car to treatment ( 5 hours latter  in bed for nap)

do the same for dinner as above

So now on my own i am lost????

Yesterday I said "WILL TAKE MY OLD LIFE BACK!!!"

Did a lot of things pushed myself hard talked to many people,eat three meals (all soft things but no peg, because i want it out!!)

Well by 8:30 I feel off a cliff:

so tired I fell asleep doing my teeth

could not swallow PAIN so great!! need to take a perocet

Now i feel the worst I have in weeks !!

scared John 

Hello John,

                John, the next several weeks are going to be pretty rough. You are on the right track with your positive attitude. As hard as it will be for the short term, keep pushing yourself daily. I'm  not saying, go out and run, but just get out and walk down to the end of the block. Do a little chore. Take a nap if you need to recharge yourself. Your still in recovery mode.

                I played a little mind game with myself. I told myself that I was tired from doing things around the house. I would make myself chop some wood daily after the radiation treatment. I couldn't do it long, maybe 10 minutes, but I said to myself, now I can be tired and would take a nap.

                 As it has been mentioned before, your treatment isn't over just because your not on the table getting radiated. It is still cooking and working on you. I was told by my Oncologist, that I would become anemic and would run into fatigue issues for the first year, off and on. This did happen and on occassions, still does.

                 Hang in there John, your almost there. If you want, send me a private message and I'll talk with you more.

                 Take Care

I'm glad you have a positive attitude going, but, like Pop-pop said, youre gonna still be cooking inside for 2 or 3 more weeks, after that you'll start to feel a lot better. Dont overdo it. Too much too soon can really set you back. Also, your immune system is practically nonexistent right now, so be careful. Some thing  simple like a cold could really turn into something serious. I'm 7 months out of treatment, yet I spent last Saturday night and Sunday in the hospital with an infection in my throat where my tumor used to be.

Take it a bit easy for a little longer, OK?

Best wishes,

Mike

i understand your feeling of being alone and on your own.  my s.o. and i have felt the same way since treatment ended...we depended on the interaction and guidance from the folks we saw everyday at the cancer center.  it is rather frightening to be on our own!!!

mike is spot on when he says give it time.  my guy is a month out of treatment...there are good days and bad days.  he had a tough course of rad because of an unknown primary.  a good day is getting all his own tube feedings in with little help and maybe a trip to the mailbox.  he is still sleeping most of the day.  getting showered, doing teeth care etc..are the focus of his day. 

i commend you for being able to withstand the daily travel time you endured during rad treatment...we had just a 1/2 hour commute each way and found it difficult at the end.

hang in there...we are all here to support you.

~meesh

John,

Everyone above has said it all. A few days after I was done w/ treatment I posted "Now what?" I felt the same way. All through treatments you are so focused on the task at hand, then, just like that. It's over. But you still feel like hell. You'll continue to feel like hell for a spel. But that is normal and typical. Slowly but surely you'll come around.

3mos. later, I'm almost 100%. Still scared it'll come back, still worried that I'll feel a lump. But, heck. We've been through a rough time and it takes time. Don't push it, just accept it. You'll be fine, just becuase you asked and explained how you feel to all of us shows me you-re on the right track.

You'll make it buddy. Slowly start getting your life back. One day at a time.

God bless,

Rick

John,

It might help you to know that I am 12 yrs. out from my treatments and remember well those first weeks and months afterward. You need a lot of rest and time to build your immune system back up. Just give yourself that time. A month after my treatment I felt the same as you because my family had left to go back home and I was then on my own. If I really was down I learned to call a friend to talk.  I tried to be postitve because your mind is very powerful. I did visualizations each day to enforce the positive results. I researched diet and saw an alternative practitioner for help to build up my immune system. Each time I had a good report from my dr. I rewarded myself with something.

The most important thing is to rest and be positive.  You have gone through a lot and it will take some time to regain your health. I read a lot of books on healing that were also very helpful.

Take Care-- things will get better!!

Nora

Like thoses above, I also discovered the necessity to GO SLOW..I'm almost 3 months post last chemo and still have fatigue episodes that come and go.

I can also relate to feeling "abandonded"..while the treatments are onging EVERYONE is eager to help and assist..but once that's complete, if feels like they may have forgotten but that's not true... folks need to get back to their lives and I've had to repeat that a few times to remember it myself.

I loved the comment from one above who said to get out of the house every day...I am going to do that now that I have some strength back and can drive without concern.

 Celebrate EACH daily victory...For example, when I could button clothing by myself again!

Good luck to you and keep the faith, be patient with yourself!

Lyn 

John - I assume you are doing better now (June 8th) than you were when you made your post. The preceeding great advice and encouragement has probably helped you quite alot. I'm lucky that all my medical team is only 10 minutes away and they are insulted if I don't stop in weekly to say hello.

However, one bit of advice I might offer relating to the matter of energy to get you thru the day is tied to caloric intake.

 Most people participating here are either helping someone or have themselves lost a hugh amount or weight. As the weeks after treatment ended becomes months, one of the last normal body functions to return is the sensation of hunger. I don't feel hungry during the day when I have only 4 cans of Ensure (taken by mouth now). However, by mid-afternoon with only 1,400 calories ingested I do feel fatigued. I could probably eat nothing some days and not feel hungry. Snacking on whatever I can get down in reasonable time or maybe another few cans of Ensure always always gets my energy level up. It also improves my mental attitude.

The day it finally dawned on me that feeling tired much of the time was a direct result of the number of calories I was taking in, was the day I became a full functioning person once again. I even stay up past 10 pm now and get up at 6 am and do a 4 mile walk. Can't wait until tues. to get this tube out. Anyone know, though, if it's OK to pull it out yourself? I'd love to do it right now.

Let us know how you're doing now, John. We're very interested in your continued positive progress on the road to your return to a normal life - both physically and mentally.

Good luck!                                                                                       Steve

Steve, this message is for you....PLEASE whatever tube you are referring to; don't pull it out!

Most tubes are either stitched in place or there is a balloon at the end filled with air or fluid to keep the tube from slipping out accidently...To pull it out can do damage..Lyn

On 6/8/2008 surferboy wrote:

John - I assume you are doing better now (June 8th) than you were when you made your post. The preceeding great advice and encouragement has probably helped you quite alot. I'm lucky that all my medical team is only 10 minutes away and they are insulted if I don't stop in weekly to say hello.

However, one bit of advice I might offer relating to the matter of energy to get you thru the day is tied to caloric intake.

 Most people participating here are either helping someone or have themselves lost a hugh amount or weight. As the weeks after treatment ended becomes months, one of the last normal body functions to return is the sensation of hunger. I don't feel hungry during the day when I have only 4 cans of Ensure (taken by mouth now). However, by mid-afternoon with only 1,400 calories ingested I do feel fatigued. I could probably eat nothing some days and not feel hungry. Snacking on whatever I can get down in reasonable time or maybe another few cans of Ensure always always gets my energy level up. It also improves my mental attitude.

The day it finally dawned on me that feeling tired much of the time was a direct result of the number of calories I was taking in, was the day I became a full functioning person once again. I even stay up past 10 pm now and get up at 6 am and do a 4 mile walk. Can't wait until tues. to get this tube out. Anyone know, though, if it's OK to pull it out yourself? I'd love to do it right now.

Let us know how you're doing now, John. We're very interested in your continued positive progress on the road to your return to a normal life - both physically and mentally.

Good luck!                                                                                       Steve