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Fatigue or depression?

RevLee
Posts: 50
Joined: Jul 2009

My husband John, as most of you know, finished his chemo treatments on 9/25 and his radiation treatments on 9/28. Fatigue set in on 9/25. It is so bad that, for example, today he slept from 9PM last night to 10:40 this morning. I called from work to see if he was okay and I asked him if he had anything to drink. After screaming at me on the phone and telling me to stop bothering him, I hung up. He then got up around 11:30, long enough to drink about 2 bottles of water, read the newspaper and sit in his recliner. He called to apologize and I said how important it was for him to drink and keep himself hydrated. He went back to bed at around 3:30PM, before I got home from work, and is still there as I type this at 6:45PM. He was infused with fluids at Fox Chase Cancer Center yesterday and is scheduled again for the same thing tomorrow. This makes it 5 times he has been infused since 9/25.
After talking to my daughter and his sister, we are wondering if this is also depression. He knows he has to drink fluids yet does not even try. I am thinking of talking to a social worker at the hospital tommorrow before he goes for his infusion.
Everything I have read about the fatigue stresses that too much rest is not good and can make it worse. Also, it states that you have to have some activity. I tried telling him this to no avail. He was great during the treatments. This is like a totally different person. Anyone else experience this?
Lee

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

Lee,
Hi....I can relate.....my husband Charlie was dx with stage iv EC in March...surgery not an option. He underwent 4 rounds (each 120 continuous hours in the hospital) of chemo. He would become more and more fatigued after each round....which is understandable. But I started to think the same thing...is this depression?? He is on anti anxiety and an anti-depressant but I thought maybe the paxil dosage had to be adjusted. I started looking into seeing a professional but in the meantime we went to the cancer center and checked out their resources. We spoke with someone and she gave us (out of a medical journal) the symptoms of chronic fatigue and depression. I guess if you have a certain # of these symptoms, you can be considered depressed. Well Charlie didn't have enough of the symptoms to be considered depressed. Since then we have been going to a support group which I think is helping him a little....at least it gets him up and out of the house. After the last chemo treatment, they started him on Xeloda which also makes him tired. So I find I really have to push him to get up and out. We have been going for little walks in the evening after dinner....and I have been asking him to do little chores around the house. I have even gotten him back on his bicycle. But he still naps everyday and I still worry he is depressed. How could you not be given his prognosis. We go to our support group tomorrow and this is suppose to be the subject matter. There are many people in the group wanting to know the difference between the 2. In our first meeting, there was someone there that thanked his wife for pushing him to get up off the couch..he said it was the best thing she could have done for him. Therefore, I push Charlie...and thankfully he doesn't get mad at me...he knows I am doing it for his own good....
Not sure if I helped...but I do think it is a good idea to speak with someone.
Take care and stay strong.
Jane

RevLee
Posts: 50
Joined: Jul 2009

Thanks Jane,

John is done treatments. He only takes percocets when he needs them and a anti-nausea pill when he needs it. He has taken 2 anti-nausea pills today because he said he feels nauseous. I told him it was because he is taking the percocets on an empty stomach and not putting anything into it. Does not listen. I tried to push him and got screamed at for it, so I just decided to back off. I am going to talk to the doctor tommorrow and try to get in touch with a social worker. Maybe he will listen to them. The doctor told him not to go up and down the stairs too much and John takes that to mean don't do anything. I am compassionate and sympathetic to a point but when you will not even attempt to help yourself, I stop and step back. Of course, me having to have MOHS surgery for a basal cell carcinoma lesion on my cheek next week does not help my stress level. But I try to push that aside. I am trying to see if I just step back and not baby him maybe he will start moving himself!

Lee

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hey Lee,

I call it "CRANKY CHEMO ITIS" most us as caregivers have been exposed to it at one time or another. My remady is alittle retail therapy. Al is retired and I have been off of work on
work comp for since I had spinal surgery last February. You need to have some time for yourself you guys need some space. I find little things and ways to trick him into doing things. I don't know how long John has been finished with his chemo but it taks a long time to get out of there systems.Sorry I read He only stoped chemo less than a month ago
I really is'nt out of his system yet. I took Al like about the 4-5 week to even start to feel normal. Cut him some slack but not to much.

Hope this helps,
God Bless
Kath

RevLee
Posts: 50
Joined: Jul 2009

Thanks Kath for the heads up on how long it takes to get out of his system.
I work for a residential juvenile justice system placement and have a lot of social workers around me. I am not one, I am the resident computer geek. But they suggested that I call the social worker department at Fox Chase. I did and a very nice woman who has worked there for 30 years went and talked to John today while he was being infused with more fluids. Her 1 1/2 hour talk with him did wonders. She told us she is there for both of us. The change in John was amazing. He really got a lot of fears, frustration and tears out while talking with her. AND he ate a small dinner tonight. He knows he has to drink fluids all day. They are going to infuse him again on Friday to help him keep his energy up. His magnesium level is low so they keep giving him that via IV rather than pill form since the pill causes diarrhea. John thinks that is clearing up now, and that makes him feel better. He knows that I only got on him because he needs to hydrate himself. I do not care if he rests all day as long as he drinks fluids. He has been retired for 10 years from a job with the city but he worked part time to keep himself occupied. Being home and not busy was another thing that was bothering him. I could not thank that social worker enough.

Lee

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

Lee,
Happy to hear John is a bit better and the social worker was able to make some progress. I find that when Charlie feels good, he feels better mentally. When he feels like crap...he tends to be down in the dumps....but lucky for me...he never snaps at me or gets mad at me. I don't know what it is about drinking the fluids....I could never get Charlie to drink enough either......after his first round of chemo he had to be hydrated. He was in such bad shape....the next few rounds weren't as bad....he did drink more but not as much as he should have. I would get so frustrated.....so you are not alone!
Stay strong.
Jane

RevLee
Posts: 50
Joined: Jul 2009

Thanks for the post Jane. John normally does not snap at me, so I knew there was something amiss. But today he got up and tried to drink his Carnation Instant Breakfast. He got 2/3 of it down. Then he unloaded the dishwasher for me (it took him 4 tries to do it, sitting down after each part). I told him he did not have to do this but he said he wants to help me. He has tried to eat a bit today and is drinking. We walked down our block and back. Compared to 2 days ago, this is wonderful! I know he could be too tired tomorrow, but he is due back at Fox Chase for more fluids tomorrow. I think they are going to do this every other day until he seems on the mend so to speak.
But it is frustrating and scary. You so want them to get well, especially when he will have the surgery in 5-7 weeks.
Hanging in there,
Lee

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

Lee,
Happy to hear John continues to make progress. I remember when Charlie first was able to take a little walk with me....it made me so happy to be doing something normal.
Hope the hydration goes well tomorrow and continue to be strong.
Jane

RevLee
Posts: 50
Joined: Jul 2009

John is eating as much as he can now considering his esophagus is sore from the radiation and he is drinking as much as he can. He walked around a store yesterday! This is the same man who could not even get out of bed on Tuesday. He credits a lot of this to the social worker who just let him talk and did give his a little advice and a lot of encouragement. Plus, some of the side effects are no longer bothering him like the tingling in his fingers and the metalic taste in his mouth. Hopefully he has turned the corner and now is on the road to getting stonger and better before the surgery.
Today is our anniversary and his improvement is the best gift he could have given me!
Lee

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

Lee,
Happy to hear more good news. It is amazing how quickly things can turn around.
Happy Anniversary...and I hope you have many more. We are off to Amelia Island (in FL) tomorrow to celebrate our 35th anniversary...it is on Monday, the 12th of Oct. Looking forward to it.
I pray things continue to progress for you both.
Stay strong,
Jane

aunti_m's picture
aunti_m
Posts: 42
Joined: Oct 2009

Hi Lee,
I'm new to the site but saw your posting. My husband was dx with stage iv esophageal cancer this past May and has good and bad days. For example, this past weekend he slept til 11:00 on Sat. after going to bed at 8:00 that night. On Sun. I woke him at 9:00 to go to church with me but said he didn't feel like it. When I got home at 12:00 he was still in bed, finally got up around 1:00 and at 2:00 he finally took his pills he was still tired and fell asleep on the couch around 4:00. I worry that the reason he feels so crummy is because sometimes he misses taking his pills. I thought too, maybe it was depression because you're right how could you not be depressed after getting such a terrible dx. We scheduled a meeting with a family counselor, hoping that helps, he wants to find a support group to attend but is he's having a hard time finding a one in the area. My mother-in-law tells me it's normal for him to be up some days and down the others. I'd like to see him take his medication consistanly to rule that out. I am constantly on him to eat, he has lost his sense of taste says everything tastes like cardboard and has lost quite a lot of weight. I try to tell him without food he won't have energy. I thought about slipping a few ho ho's in while he's sleeping but then though maybe not such a good idea :). He is also like a totaly different on those bad days and I try to be sympathetic because I don't know how he's feeling. Hope your husband is feeling better soon.

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Hi AuntiM
you are so great to be a caregiver! It is harder than it seems---
I love the thought of sneaking in some Ho-Hos!
I am kind of new here too---my dad is stage 3 or 4---but my mom is going through exactly what you are right now! My dad dad is recuperating from 6 weeks of chemo radiation at DUKE, but my mom is frustrated that he is not always trying to get enough fluid or his other meds in as much as he should.. I am far away---but worried that he may get dehydrated with out realizing it.

I did send them (a while ago) a cookbook with recipes for esophageal cancer.... she forgot but it but was going to look at it. My dad is also having that issue of nothing tasting right.... I am not sure of the answers, but it actually is comforting to know we are not the only ones dealing with this---

hang in there---some one may post some great suggestions... my mom has been so patient, but now I can feel the frustration---we all have the same goals in mind...

take care!
KIM

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

The chemo I was on made everything taste very dry and like cardboard as well. I found that anything like bread/ plain chicken, etc, made eating horrible, but spaghetti with a lot of sauce, chili, macaroni, etc. were all very good and I craved them. Popsicles were good too! Unless you're on Oxiliplatin, then stay far away from cold items!

aunti_m's picture
aunti_m
Posts: 42
Joined: Oct 2009

Hi Kim,
It must be hard to be far away, I'm sure they know how much you want to be there if you could. My husbands sisters and brother live very far away but I know he still feels the love and care from them, no matter what the distance.

Thanks for your post, my husband is the Love of my life, we are lucky to have had such a wonderful relationship. I'm glad that I'm able to be his caregiver in this aweful time. I know he would do the same if I was sick. We've been through a lot together. He is a recovering alcoholic, has been sober 8 years now. I've decided to take on this disease as I did with alcoholism. I will not let the disease run my life. I have control of myself not the disease, so I will either continue to live as happy a life as I can or be miserable and sad. Don't get me wrong, I still cry almost daily, but then I give my worries to God, then I feel o.k. I will get through the rough days and there will be brighter ones ahead.

It's such a hard thing to see so many on this site, so many affected by cancer. It can do terrible things to people, I hope they all stay strong. I guess that's why we meet here, for strength.

Thanks Kitten for the spagetti, chili and macoroni ideas. Just so happens I can make a great sauce and the best thing is my kids will eat it too. I'll have to stock a bunch in the freezer. He is on Oxiliplatin and cold does bother him, but he just can't resist his ice cream no matter how much it hurts. Last night, he had to have a mint concrete mixer from Culvers, but his whole mouth was tingly afterward. He said it was worth it!
take care

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Aunti M
wow---this site confuses me! I try to check it frequently. but just saw your post---warms my heart. I can not talk to many people about what my dad is going thru (& mom)-so this site helps. My parents are very private-so they would not like me divulging all their "info"...so I try to balance anonymity and truth. My parents have been together for about 50 years so this is hard...of course it is for all going thru this. Thanks for food ideas. He is a small guy and can't afford to loose any more weight---but can't seem to get in enough calories to keep up his weight.
I know what you mean bout the emotional ups and downs...I know God has things under control-but... then I "think" to much and that may get the best of me. worry. I just pray for the two of them and that they both truly feel God's grace in their lives...even now.

I am going to try to cut and paste all the great food ideas to give to them somehow---with out them knowing I posted them on the WEB---forgive me....

thanks & good luck with the hubby! he is lucky to have you! hang in there..
Kim

RevLee
Posts: 50
Joined: Jul 2009

I am sorry for the late rely. John is doing much better thanks! He is talking things out now and a buddy of his came from church yesterday and they had a good 2 hour chat. I let them be. I got caught up in my basal cell carcinoma tale. I will not repeat it but I posted something called John is fine and now it is me. It did take John's mind off of himself for a bit to help me. We feel like the land of the walking wounded!

Lee

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