Yesterday scared me - We're 4.5 weeks in IMRT with 1.5 weeks to go and in the middle of watching a movie last night he just began to cry and I mean cry hard.

He SO misses his "real life" - in particular, he so wants to eat something. He says he's so tired of feeling bad (N & V) plus a "feeling" he says he can't explain but he just "feels bad" all over. Because he can't describe it any better I don't even know how to treat it. He also said he feels like his life revolves around tube feedings (the PEG tube went in last week and I hang a feeding every 4 hours X 4 each day.)

All I could do was cry with him, validate that his feelings are normal and reassure him that his quality of life *will* get better.

But it's going to get worse before it gets better, isn't it? I don't know if I can hold on...I feel like I'm falling apart.

Hi Debra, Hopefully some of the caregivers here will be along soon to talk about the feelings you have about this. From the other (former patient) side, I can say that, although I didn't cry much, I did have days when I felt exactly the things your husband was feeling last night. In fact, I think for me the fifth week was the worst because I was feeling pretty bad by then but I knew there were 2 more weeks to go of rad and then the 2-3 weeks after where you feel just as bad or worse and I couldn't imagine how I was going to get through another month or more of feeling so bad!

It really becomes a necessity at this point to take one day at a time, and that is something he'll need to do for himself--there's only so much you can do for him.

I will say that if his mood starts to seem this way constantly, you may want to talk to someone at M.D. Anderson about whether he needs an antidepressant. I never felt I did but many people do during this treatment because it's so hard to take.

I also understand what your hsuand means when he says he has a "feeling he can't explain but he just feels bad all over". It's the radiation causing that--I felt it both times I had rad (I also fought a batle with breast cancer last year). They don't talk about "radiation sickness" for nothing! But this too shall pass in the long run....one day at a time.

Nelie

Hi Debra,

I just posted your last message. Ditto to what Nelie says.

The feeling your husband has is normal for what he is going through. It is tough road but he can at least know it will bve done fairly soon. The last week is hard, but I perked up a littel becasue I knew treatment was ending and I could begin top heal. It will take a long time to fully recover. I'm two years out and still feel the effects. Have they checked his TSH. His thyroid is probably fried by now. Synthroid really helped my overall mood and energy. You should know, I was on the PEG from the middle of October to Jan 29th. For some others the tube stays longer, others are able to eat much sooner. It is a testament to his fortitude that he just began to use the tube. Right now, he needs your strenght to help him fight.

Debra,
You will never forget this time. Your feelings, his pain, the way your life centers around cancer from dark to dark everyday, BUT.....

I always felt like the days passed faster for me than for him because I was running a million miles an hour to take care of everything and all he did was lay in that bed unable to do anything. I just kept telling myself that tomorrow would be here soon and to keep on trucking.

As for your fear of not making it through... you will. What will happen is that when you begin to feel like you are right there on the edge of where you feel like you cannot step another inch forward, something inside will take over and you will bring it up and use it to make it through.

I can't tell you what that thing is because it is different for each of us but caregivers just DO and you WILL.

The crying is normal. Although my husband never cried in front of me I heard him from time to time and I got so good at it that I could be in some totally happy environment and just cry out of the blue. When I was driving down the road, standing in a line at the store, watching TV and movies became impossible for a while because it took so little to trigger emotional reactions.

Over time, after treatments, you will find that the sensitivity will relax a little. To be honest though, we are almost 2 years since treatments and I still have problems watching TV and movies sometimes. I have accepted that it takes a long time to recover from cancer txs, not just for the patient, but for the caregivers as well. It is just a one day at a time kinda thing.

Finally, the end of rad txs is so difficult. After 6-7 weeks of the daily trek down to the rad center and the pain and misery that the patient is in it is not surprising that many want to quit. My husband tried everything to stop me from taking him down there. He almost pushed me to the point of picking him up myself and shoving him into the car. At the rad center it was a fight. A literal fight to get him on the table for the last 5 txs. I had to coach, play cheerleader, enlist the personnel at the rad center and yes, even threaten once. But I did it because in the back of my mind was the constant nagging voice always reminding me that this is something that MUST BE COMPLETED. Has to be done! And why go through all of that pain only to quit when he could see the finish line? The life threatening implications if he did not complete the radiation I couldn't even consider.

So all of this long winded rambling is simply my way of offering to you that the view changes everyday. Enjoy each moment, work yourself through the other moments and help him to hang on. Once the rads are finished he will start feeling better rapidly. Before you know it things will get better and all of this will be like a bad memory.

Best to you both!
Cindy

Debra
There is not much I can add to Cindy`s brilliant post. What he is going through IS very normal, Like Cindy`s hubby mine tried so very hard to hide his feelings. The only time I heard him cry was when I walked in on him in the shower one day, to this day he does not know I witnessed his breakdown...no point in telling him it was normal...he is what he is.
I cannot imagine what the patients go through...one day they are in complete control of their lives and the next dependant on us for the littlest things.
I know this is hard on you but trust me the reward is priceless.... I look at him in wonder every day... unable to imagine life without him .
Hang in there Debra...you can do it and so can he.

Marica

Debra - That 'feeling' your husband describes may very well be radiation sickness (as mentioned above). Every person has a unique experience with radiation. And, treatment is not just physical, there is a potent emotional impact too. Those tears of his are likely not just about being in pain, but can also be an accumulated frustration and feeling of helplessness that most guys don't like - really don't like.

It is my belief that every patient needs to be actively involved in daily care and routines. I did my own peg feedings and helped monitor my meds and had some minor things to do around the house. Being completely dependent is bad. Get him to participate in small ways - it will be hard, but very empowering for him. He needs to feel some connection, and activity/responsibility is the way to do that.

You two can make it through this. You are stronger today than you were yesterday. You will be stronger tomorrow than you were today. You and your husband are at war with cancer. One side will win. We are with you. Tom

Debra, Yep, your world and his, have[temporarily]fallen apart.And you have heard that "When the going gets tough_______]".Please Keep in mind that on the one hand, your issues are the same because you are a team - but they are also very different. He's dealing with this on a basic survival level and you are dealing with his survival and everything else. You are4 gonna have to be VERY strong, Lady. Can you do it? Amy

Thank you all for your heartfelt replies - each touched me in a profound way with advice I've taken to heart.

Thankfully, Sunday was a "good day" - we talked and laughed during the 3 hour drive to Houston and he was "himself" again (it was one of those rare days when he wasn't feeling sick). It reassured me that there will be "bad days" with this but there will also be "good days", still.

Thank you for getting me through one of the darkest days I've faced so far -

Hi Debra,

The physical part of radiation treatment is tough but I found the emotional part the worst. I suspect your husband is feeling what I felt, reading your post sounded so familiar to me. I called it and likened it to being homesick............I missed my old life and the old me with every ounce of my being. It took over me for awhile during treatment. We start treatment feeling SO ready to fight.....then by the middle of it, we realize that it's harder to DO then it was to IMAGINE doing it. He has a few rough months ahead of him, make him aware of that and also make him aware that his feelings are normal. Then tell him that he'll be typing advice to a newbie in no time! I'm telling you, that homesick feeling is powerful and saying goodbye to our old lives and old selves is one of the biggest struggles.
Minnie

I took Tom J's advice above and didn't "do his feeding" for him today. I hung all of them over the weekend when he was feeling sick, but today he's feeling good and I left him to do it himself.

Tom, it wasn't easy - but when I read your post I immediately thought, "Yeah, he needs to own this"