How do you keep their spirits up at the worst times?

[battleofbrooklyn]

My mother (63, extensive small cell) was diagnosed in April, underwent six cycles of Cisplatin/Etoposide chemo with great results, then quickly relapsed and started Topetecan regimen. After two cycles, onc canceled the chemo because it was doing more harm than good (chest tumor had not shrunk and mom was terribly weak, lost her voice, had bad SOB). He decided radiation was way to go for now, and she started last week while in the hospital being treated for dehydration (leftover nausea from chemo) and pain.

Through all this, she had really kept her spirits up, believing she was going to be that one in a million person who lives 20 years with small cell, or that she could hang on until some new drug came along. With every setback, she has reminded herself that it's temporary and that she'll try something new.

Until now.

Four days into radiation, she has become incredibly fatigued and tired. She spends about 18 hours a day sleeping and has lost her appetite completely. When she does get out of bed, she seems very shaky. And she says she "feels so sick" though her pain and nausea are under control. On Christmas Day, she told my father she's dying and this morning she asked him if there were pills she could take if she couldn't handle it anymore. When I came over to take her to radiation, she said she didn't want treatment anymore - that it was making her feel terrible and it was pointless because the cancer was just going to come back.

I promised her that I would never make her do anything she didn't want to, but pointed out that the doctor had warned us about the tiredness and said it would probably ease up in a few weeks. She seemed to rally a little and went to radiation, but was still incredibly depressed when she returned home.

I'm just not sure how to handle this. I don't want to push someone past their point of futility or make them keep fighting for my sake, but I also don't want her to quit if this is really just a three-week setback and she will feel much better next month, maybe for a decent amount of time. Has anyone else been in similar straits and how did you handle it? Should I call in some friends and family for visits, even though my mother says she doesn't want to see anyone when she feels so terrible?

Help!

[Don Wood]

Sorry your mom is having such a rough time. It is hard to see the loved one go through so much. Hang in there. Don

[J.C.]

Radiation for many people cause tiredness,

as it is killing bad cells but also a few good ones.

She was told about the tiredness, and she needs food

to keep her strength for the rest of the treatments.

Encourage her to eat even a few small meals and drink

some Ensure or any other high calories drink.

Be there for her and help her get the rest of the treatments.

Hugs

Jackie

[bunny]

if only there were something we could DO that would MAKE their spirits be great. I'd kill for that button sometimes. all you can do is be there for her. I know sometimes when I try my cheerleading routine (which I am terrible at, my brother is better) my mom feels like I am talking her out of how she feels. I've started to do kind of what you're doing - validate how crappy and depressing all of this is, but suggest that 'this too shall pass'.

counseling is also a good idea. she may resist, but if you do some research and propose it with specifics (time, day etc.) for when she's stronger again (rather than as an abstract "you should talk to someone") she may go for it. anti-depressents may be something to consider as well.

it's so hard to hear your mom wanting to give up, or be so discouraged. it's so counter to what moms are supposed to be. I think I am only now realizing how hard it has been to hear that stuff. not that she shouldn't say it, by any means, but make sure you have an outlet (here, friends, counseling of your own) for the impact it's sure to be having on you, too.

hang in there.

xoxo

amie

[gerbil runner]

My mom used to have brief "pity pot" sessions, and end them by saying she really shouldn't complain. I used to tell her she had every right to complain; then I'd find something hopeful to say.

Validate the horrible experience your mother is having. Tell her the decisions on treatment are hers - whether it's to stop everything or travel the world in search of "snake oil". Your honest support will give her some strength.

When it comes to cancer treatments, especially for such a tenacious beast as sclc, there is no "right" or "wrong" choice - just the patient's choice.

Make your mom a milkshake in her favorite flavor. Calories are vital. She'll feel better if she drinks a lot of fluids, too.

Spoil her rotten. Why not?

Wish I could say something more helpful. Keep hope alive as much as possible, but put your mother's wishes and comfort at the top of your priorities.

[Leslie221]

When I feel rotten physically, it's really hard to keep spirits up or to think about the future in any kind of positive way. Think back to some time when you had a really debilitating, nauseating flu and how you wished you could just get knocked out and sleep through it.

My experience in the past with people thinking suicide is the best option has many times actually turned that they want very much to LIVE, they just feel like an animal in a cage with no other way to escape the misery they experience. If what's making them miserable stops, they can rebound and go on.

Can her doctor be more active in doing things for her body that will improve the nausea, at least? I'd focus on getting those side effects under control, and I think she'll be able to lift out of this depression a whole lot faster. Hope so.

Hang in there and share with us when you need.

Leslie

[dchurchi]

My Husband slept about 18 hours a day during his

radiation treatments and I told him it was his body's

way of helping it heal itself, seem to work.

Also is your mom on any antidepressants?

Alan's Dr. perscibed them right away as I think

many cancer patients go through some level of

depression. Who can blame them.

I wish I had more words of wisdom, but I don't.

sounds like your mom is a fighter, I will keep you

both in my prayers.

[Sheri]

I've never seen my father so sick as I did when he was a few days into his radiation. I still have vivid images of him buckled over on the couch almost in tears he felt so horrible. He told me he didn't want to live if he was going to feel so bad.

We made it through that night and he's glad he went through the pain to get to where he is now. Assure your Mom others have been through it and recovered from the effects. It took a while for him to recover from the fatigue, but he never felt again, as sick as he did that one night. Hang in there!

I wanted to add, if she say's she doesn't want company when she feels so bad, believe her. I learned through my Dad's experience, talking to friends and relatives requires them to exert energy. As little energy as it seems to us, it's like trying to move mountains to them. When I would stay with my Dad on the weekends, I just brought over every funny movie I could find. We didn't have to talk and it got him through the rough times.

[Don M]

I am sorry your mother is feeling so bad. I have had chemo but never had radiation. I understand that the radiation can really whack you for a while. I took antidepressants for a while and I think it helped me. And, when I felt lousy during chemo, I just slept through it. If I was feeling as lousy as your mom, I would probbaly want to sleep a lot also. I hope your mom gets through the radiation treatment and can feel better again.

Don M

[kamataca]

My mom had a terrible bout of depression after having all of her energy zapped out in radiation. Although her Dr told her she would lose energy, she never actually "heard" that. Maybe your mom just didn't expect it to this level, and it can be very frightening.

My mom is doing great now--was able to enjoy the Christmas holiday, and is taking off with us to a cabin for NYE. This is a tough, tough road, but it does get better.

God love ya, I'll keep you in my prayers. Remember to take care of yourself, while taking care of your mom.

Kelly

[Maryanne]

See honey, it seems from the replies to your posts that many people go through this when they have rediation. It is in the norm. But as you see, it will pass and could get her to the next level.

I know you want to respect her wishes as you should. But try to encourage her to keep fighting as she can win this round.

She needs her strength, try making her milk shakes with boost or some smoothies. Anything she can get down. Some people said that Kool Aid and popsicles worked and that is so good to keep from getting dehydrated.

Just keep telling her this is just a temporary normal feeling.

I pray for strength for her to get through this hurdle.

Maryanne

[battleofbrooklyn]

My mom seems a little peppier today - a combination (I think) of the radiation tech telling her that her fatigue was expected, that she should not fight it, and that it WILL pass, and my reminders to her of how miserable she was at some points during chemo but managed to get through it.

She ate a small bowl of cereal for breakfast and then had a small bowl of chili soup for lunch and didn't sleep the entire day away. She even got on me about my long-delayed plans to buy a car because, she said, "we have a lot of things to do when I feel better." I know if she's nagging me, things are looking up!

Thanks for all your advice and especially for letting me know that what she's going through is "normal."

[bunny]

I know if she's nagging me, things are looking up!

ain't it the truth!?

[Leslie221]

Good news! Here's to more of the same. Sounds like Mom is on her way back!

Leslie

[Maryanne]

Okay now I feel better.

Maryanne