I have found myself getting out of sorts over the past few days. I am not sure if I am anticpating that treatment is over soon or if I am just wore out. I can't put a finger on it. My husband has been extremely irritiable as well. I know that he has a lot of pain and is try to deal with. He has to use his peg tube now because he can't swallow food. He is still swallowing water and encouraging him to do his mouth exercies.
Sometimes i just feel really upset mad not sure what about but just not the way I usually act. I don't want to be that way. I want to be as supportive as possible. I feel that I do more damage when I am out of sorts.
Do any others on here get that way?
My mom is here with us and that does help, she helps with my laundry and dishes and cooking for her and me.
I take Rex daily to radiation and then go to back to work and work my 8 hours. Our drive is 45 minutes each way. Thursday we will be done with treatment and that may help.
I am scared when we no longer go to treament becauase I won't see the dr.s daily.
I think I am a little confused right now and I don't know what to expect next. I am scared and full of fear.
Pat

Pat,
You have every right to be "out of sorts". Seriously, you've earned it. Your lives have been turned upside down, shaken, and thrown about. You didn't ask for this, and you wouldn't wish it on your worst enemy. I felt better when I finally learned to allow myself to have bad days. I realized that those feelings are part of the deal, and that they won't last forever. It's good that your Mom is there to help. Moms are good. Remember that you've earned the right to not have to be a superhero every single day. For me, things became a lot easier when I gave myself permission to just give in to it now and then. And, Rex and your Mom probably understand more than you know. Hang in there, Pat.

Being a caregiver ,while also being scared out of your mind about the future and well being of your husband and your family and life is hard. 101 things you have to do in every day life and also the 1001 new things that have to be done during tx,leaves you exhausted and mentally drained.you wouldn't be human if you didn't feel tetchy and waspish on occasions,and the burdens you now have to shoulder while your man just tries to stay upright and functioning are a heavy weight to carry.

dont be despondant this is all perfectly natural and may even get worse for a while but come here and share your feelings with those of us who have been there and got the tee shirt.it does help pat.

love liz

Pat
Gosh your post put me right there in my mind and it has been almost five years ago. You are pretty "normal" for where you are in this journey so do not be discouraged. " My friend called it hitting the wall" and I hit it hard several times during Bobs treatment and recovery.
You should take that extra time that won;t be used on driving to treatment for a little minute/minutes of Pat time. Take a walk, go to a coffee shop before work and just sit and relax..take a Pat break and give yourself a minute to think..

You are right to be concerned about the week/weeks immediately following the end of rads treatment. Not because you won;t be seeing the Drs but because they are sometimes the hardest as the effects of the radiation seem to really have an impact. Bob said it was the worst time of the whole ordeal. He pretty much slept the whole first week. It was the worst time he had for mucous and breathing etc...He had worked up until the last week of rads but then was down for the count for about two/three weeks.

SO be kind to yourself SHARE your feelings and questions here!! Everything Liz said is dead on!!

and the good news after those "bad" few weeks following treatment I started to see my husband come back..very slowly but surely he started to improve everyday. As he felt better his determination to eat and drink and do what he needed to be doing came back!! As he did he got stronger, as he felt stronger his attitude and irritablity improved.

There are brighter days ahead but in the meantime feel however you feel no guilt, do a little thing just for you no guilt and lean on the folks here ... no matter what you are feeling someone else has been there and done that YOU are not alone.
Peace
Denise

Pat, very soon this will all be over. As the caregiver your job is very difficult. You must not only take care of the patient but try to be positive as well. I dont know how you have managed to work full time thru this. You are a very strong person, be proud of your accomplishments.

Try to take some time for just you. Even 10 minutes a day to just catch your breath away from all your pressures and responsibilities.

Very soon will be the time for rest. When treatments are first finished your husband will rest alot. I stayed in bed about 22 out of 24 hrs per day. I only got up right before my kids got home so they wouldnt be worried that I didnt get out of bed. I went from bed to couch then after spending a little time with them I was right back to bed. Your husband is so lucky to have a caregiver, I didnt have one and dont know how I got thru it.

Hang in there the end of this whole thing is coming up very quickly. Remember, all the doctors are just a phone call away. Since your husband has the peg tube, your hospital might have a visiting nurse. I am also 45 minutes away from where I was treated and I had a nurse come once or twice per week to check on me. It was only for a couple weeks, but it was very reassuring. Ask at the treatment center if thats available. It would give you a hand.

Christine, you hit the nail on the head. Caregivers have to make sure they're taking care of their own needs! As they say on the plane, "Put on your own oxygen mask before assisting others."

Pat,

You're doing great and the end is in sight! But please do take time for yourself, every day. Even if its just a short walk, or a 5 minutes of meditation, or whatever suits you. It is so important.

- Margaret

I want to thank everyone here for replying. It comes to a point where I get lost and confused. I just need some reassurance that I am really ok.
Once again thanks so much...
Pat

Oh Pat
How could someone not feel lost and confused. This fight is not a natural thing that anyone is ever prepared to deal with..since we can not prepare all we can hope for is the strength to keep stumbling on through trying to do our best...
YOU ARE SO OK!!

Pat,
you really are ok. What you are feeling is normal and expected. I would be more concerned if you didn't feel this way. As others have already said, you must take care of yourself as this will be the hardest time of all. The month or 2 post Tx is very hard. The effects from radiation keep on building and healing is very slow. His pain meds may put him on the edge so he might even be delusional or abusive. Make sure that you utilize family and your support network to help you through this. Respite care for you is a very good thing. A caregivers support group could benefit you as well.

I want to thank everyone that responsed to my message. I have not been on because things have been a bit overwelming. I am so glad that I came to this site. In mind after the treatment everything should go back to the way it was and he should be fine. WRONG He is worse that he was. The burns on his neck look bad, but we continue to soak and medicate them. This morning he had a low grade fever but this evening it was gone. Thank God.
I am glad that you are all here
Pat

If it wasn't for this forum i think thats a mistake a lot of us would make pat.The month post tx is undoubtedly the worst.

you will get through this .

love liz

Please understand that for the vast majority of us, the 3 to 4 weeks POST Tx are by far the worst, then one day he will wake up and just know something is different and that he feels just a tad better than the last day and that's what I call finally walking out of that tunnel he's been in for so long. Also remember that even after that he will experience bad days and then some good days but slowly the good days will outnumber the bad days until the bad days finally go away for good.

It really took a long a time for Bob to get used to his new normal and "lighten up" even after he was physically in good shape. I kept expecting this "I have to embrace life and smell the roses " attitude since he had fought so hard and was cancer free. It was more than a year after treatment before he shook the post treatment blues, they were not severe and did not require medication but subtley he was definitely a little down. I was at first very confused by this until I read of so many others having the same experience here. It helped me be patient but it truly was a little frustrating to say the least.

It's hard to imagine what one feels like experiencing cancer but I know even what used to be a simple sore throat post Tx brought on horrible recurrence thoughts. Anything that felt different in my throat brought back the fears of cancer but as they say, time heals.... so now when I have a sore throat I just think it's a cold (well mostly, lol).