I suspect I am not the only one concerned about loss of energy and lack of desire to do some things. I started losing interest in many things (going out dancing, movies, bicycling, and other physical things) about 10 years ago, which was the same time I seemed to have lost energy. Now, my wife constantly is on my case to do things--things I really do not want to do. I have taken several trips since my diagnosis--Hawaii last summer, Mexico last December, Newport, RI in May of this year, and I will be going to Puerto Rico and Hawaii in August of this year.
I noticed, however, that I simply do not want to go to concerts and many other things, particularly those where I have long walks from the car to the event. When I come home from work, all I want to do is rest.
My wife, on the other hand, never wants to be home and becomes agitated when I state No, I don't want to go. I really do not feel like it. I was wondering if other individuals have had the same experience in their relationship and how they might have dealt with it.
Jim
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Getting partner to understand cancer/chemo effects
- By diamond
- Posted June 26, 2009 at 9:52 am · 46 replies
- In Family members and caregivers
- Shared with the public
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Exercise Cancer Chronic bronchitis Falls Acne Chemotherapy Tarceva Bronchitis Zoloft Stress Asthma Arthritis Stroke Diabetes Taxotere Pain Memory Depression
46 replies
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- Newest first
- By merylee
- Posted June 26, 2009 at 10:07 am
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Hi Jim.
I'm wondering if it would help to have your onc speak to your wife about the effects of chemo? Maybe he could help her to understand your situation?
I'm also wondering if you are suffering from some depression? Maybe an antidepressant would help your outlook and help you to regain some of the pleasure you once enjoyed when going out or traveling?
I would be shocked if a diagnosis like we've had didn't send someone into a depression. We are all painfully aware of how precious life is and how short it may be. Why spend that time unhappy when there is so much help available?
Possibly you could suggest that your wife do some things with a girlfriend or one of the kids?
- By stage4survivor
- Posted June 26, 2009 at 10:31 am
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Diamond Jim,
Jeeze! You make me work! Had to look at some of your earlier posts to get a handle on where you're at.
Did they ever decide on dx, NSCLC, SCLC or what?
Are you receiving chemo now?
Merylee brings up some good points.
What do you enjoy doing?
G
- By terryl
- Posted June 26, 2009 at 11:27 am
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When I found that all I wanted to do after work was NOTHING, I decided it was time to quit work. Life is too short. March 29 2009 was my last day at a job I held for the last 15 years. I am doing things again. Fun things. making memeories with my family. It is just too hard to do chemo and work . There is more to life than work and sleep and I wanted my life back.
- By texaszan
- Posted June 26, 2009 at 11:34 am
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I guess your wife will just have to get agitated and then find a girlfriend to go out with. I have RA so I know what it's like to be tired all the time. I should think she'd have a little more sympathy for your situation instead of only focusing on what she wants to do.
- By diamond
- Posted June 26, 2009 at 12:40 pm
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I have sclc, nsclc, mixed cell cancer--lungs with mets to liver--I never do anything half way. I had the first treatment with cisplatin + etoposide--four cycles; 2nd treatment with taxotere--three cycles; and am now on Tarceva--pill.
I just really am worn out so much. Much of the time, I simply to not want to be around lots of people. I don't think I am depressed--maybe I am but I do not think so. I still get high on fishing!
Jim
- By diamond
- Posted June 26, 2009 at 12:44 pm
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Quitting work or retiring--I can--seemed like a good idea until I realized the financial mess it would cause. First, my health insurance would increase from about 350 per month to nearly $1200 per month. Second, my life insurance death benefit from work would drop a lot--important I leave wife sufficient funds to live on, as well as my various retirements.
I appreciate the input by all. I am temporarily moving to the beach for a year (or less) and I plan to do a lot of fishing and boogey boarding. I will still work; I am working on a special research project that allows me to work from anywhere.
Thanks all!
Jim
- By sheilake
- Posted June 26, 2009 at 1:16 pm
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Jim, I am so glad you are taking stock of what is important to you. I, too, found it very frustrating to have friends and loved ones want to pretend that I was the same person I was before. During the first months (before Tarceva) my right lung had collapsed because of fluid build-up and I couldn't walk 10 feet. Yet friends would seem irritated that I didn't want to do trips to the Ghetty museum or walk up hill.
I finally used stronger words with them, "I just can't do it." That helped. When you have low energy, crowds are too much as is entertaining lots of people. Finding events that use less energy might be a way to help your wife's need for stimulation. Also
Merylee's suggestion about encouraging your wife to go out with girlfriends might help.
Think its great that you have decided to work and "go fishing" at the same time. What time is left is precious. Hope you find joy in every minute of it.
Best wishes,
Sheila
- By cuddles53
- Posted June 26, 2009 at 1:23 pm
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I have to agree with texaszan, I also have been there and still don't want to be on the go all the time, or even at all, and I don't work. So if I were you I would let that woman know that you just can not keep up the pace like you used too, maybe she doesn't realize how hard it is on your body, if she does, than I would assume she doesn't worry about it, and is only concerned about her own happiness. I will not let people push me anymore, I used too but no more, when I say no I am not going out I mean it. I am in charge of myself now. I hope the best for you, it looks like you found yourself a younger wife, and this could be the case, she is on the go more, and of course younger aged means more energy.
This disease we have can also make or break a relationship, good luck to you.
Sandy
- By Granny888
- Posted June 26, 2009 at 3:01 pm
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I found the same problem, not having a s/o but having family. They want get up and go to be part of the i'm going to live through this package, and maybe it should be most most days I'm not quite there -- when I start to be short on breath I know I'm not 'doing' enough and I yell at myself, otherwise I'm quite content reading that book and that occasional (too occasional according to my family) family get-together.
I wish there was an easy answer. "I can't" helps. "I don't want to" --- ehhhhh ... I seem to to best with "by or on such and such a date ..." but I don't know. I figure I may or may not make it to retirement, I get to goof off a little, right? Being unhappy is one thing, being lazy is something else. Can we reach a happy medium ... that is my eternal hope.
- By diamond
- Posted June 26, 2009 at 3:17 pm
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For the record: My wife is only two years younger. She is, however, a physical fitness whatever--good for her. (I am 62 and she is 60). I find that I cannot (or am unwilling to do) do even the simpliest of things. I really like to just rest and do basically nothing.
For about 40 years, I have done the cooking, house cleaning, my laundry, my ironing, all the grocery shopping, paid all the bills, did all the outside work, fixed broken stuff in the house including drywall, plumbing, and electric; helped raise the children; managed to hold down a full time job, and have my own business. She did, however, have the four babies; I was just along for the support. Now, I am just too tired to do it all--eating out more often is an option but not a healthy option. Right now, I have a huge mess in my driveway because I asked my son to take everything out of the garage so I could decide what to get rid of and what to keep. I just do not want to even go over the mess.
Jim
- By stage4survivor
- Posted June 26, 2009 at 3:33 pm
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Diamond Jim,
There is a "thin line" between emotional fatigue and physical fatigue. Not wanting to be around large crowds suggests to me some emotional fatigue. Is it depression? Don't claim to know but, from my own personal experience we can't recognize it in ourselves.
OTOH, when our loved ones push us to do more, they think this is helpful.
I remember going to Montauk 2-3 years after being diagnosed and OF COURSE my 8-9 year old sons wanted to climb to the TOP of the lighthouse. I estimated it was probably a trillion steps, or thereabouts! What was I supposed to tell them?
Guess what? We all got to the top together and I was shocked I was no more SOB than anyone else! I think my wife was shocked too but, said nothing.
Sometimes doing things for others helps us more than it pleases them.
G
- By who-me
- Posted June 26, 2009 at 4:04 pm
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Diamond,
So sorry to hear about your zapped energy level. I can't even begin to understand what you are going through, but from a family members point of view....
Perhaps your wife is in denial. Perhaps she refuses to except your diagnosis. Perhaps she is afraid and hopes to keep you doing the things you used to do to keep things "normal" in her mind.
A serious honest heart to heart might be in order. I wish you both solace.
- By peyz33
- Posted June 26, 2009 at 4:50 pm
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Jim - I'm single - so I don't have your problem - but if she is the independent type and has "lots of friends" and you wouldn't mind - tell her to go enjoy these things with her friends. It's a horrible feeling to feel trapped as well as horrible feeling forced to do something you don't want to do - If she says she doesn't want to go "without you" and then resents the fact that you don't want to go you have a real problem that you need to work thru...but if she's ok with going with friends and knows that you are happier at home resting, reading a book or watching TV (no resentments on either side) it should be fine....no?
Good Luck
Karen
- By terryl
- Posted June 26, 2009 at 6:41 pm
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I want to apologize for my earlier comment. I made it sound like retirement was the answer. I know that it is not that easy for everyone, for many reasons, not the least of which include financial and insurance issues. I have been in chem since September of 07 and just retired in March, it wasn't an easy decision but fortunately I have both long term disability insurance and a very supportive husband that carries the medical insurance through his job. He also understands when I say I just don't feel well enough to do certain things. I hope you find the answer you seek,,,,perhaps you could get your wife to read this thread....
- By drawing3d
- Posted June 26, 2009 at 7:07 pm
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Jim;
I am a big proponent of listening to your body. If you feel like resting, I would say, rest.
I noticed a drop in my overall energy level a couple of years prior to my diagnosis. Looking back, I knew something just "wasn't right" even then. I found myself making more and more excuses to opt out of family events, etc. I think that was my body holding reserve energy for fighting the disease.
Chemo is very hard on the body. Be kind to yourself, mentally and physically. It's perfectly fine to just sit quietly, read a book, take a walk, take a nap even. There should be no guilt. And I don't think you need an antidepressant!
Explain to your wife that you need to let your body heal and rest. If she is a fitness expert, she should understand the body's need for "recovery". And then she may just be a very high level person too, and you may not be.
We are different people since being told we are "expected to die". Let's be real here. The days of innocence without looking over our shoulders are gone and at times we feel as if we live on different planets than the rest of the world. Every day we are fighting to find our momentum and balance - even our sanity - again. And that's okay. In time, a new "normal" will settle in.
God bless you Jim. Keep smiling.
Ellen
- By Granny888
- Posted June 26, 2009 at 7:12 pm
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Oh, it wasn't the looks or -- anything. I'm "only" 52 and I was looking forward to this retirement. I suspect anybody who hasn't already retired was still looking toward their retirement when diagnosed. What a sucky thing to deal with! But -- I figure I'm as 'entitled' as anyone, lol, are any of us though -- entitled to retire? That I haven't stopped to figure out, just figure it's gotta be some time around now, though I'd be pleased if it was in another 10-20 years.
- By cuddles53
- Posted June 27, 2009 at 12:34 am
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Whatever you end up doing, I wish you well, I am sorry I suggested you were older than your wife, all of that fitness training did her good, as one can see she looks like a youngster! so glad she is fit and healthy, but now you are not, and need the time to regain any more strength you can muster up, even if you are at the top of the line here, and are at your best, this is where you will need to draw the line as what you can do, and what you are willing to do. There must be a happy medium here someplace. As for me, I get very sad when I see someone doing something as simple as riding a bike, being on a kayak on the water, where would I put my oxygen tank, just doing all of the little things in life I loved doing, now I can sit back, and watch others do them. I can not do what I used to be able to do, try as I might, I can not, I just can not get enough air in to my lungs. I have tried walking and doing more, and more each day, but the fatigue just overwhelms me when I do try and overextend myself, so I know, I just can not do it. People have stopped asking me now to do things and go places, and you would think I feel bad about it, I don't, I feel better, not under as much pressure. If we could do those things we did before we would. Take care, I hope you find some happy medium to make you both happy in life.
An aunt of mine died now of cancer, but when she was diagnosed, she told nobody except her own husband, and her own son and his wife, we all felt bad about it on my side of this family, as we adored her, her name was Lily. She had decided as soon as she found out she had cancer that she would not take any treatments, and therefore she knew she would begin to detirorate rapidly, she never wanted anyone to see her go down this way, she wanted all of us to remember her as she once was, fit and fun, laughing, someone who would just make you feel like throwing a party!, she was a real character, and so much fun to be around. In this time in her life she did not have to make up stories or do anything to anger anyone she just stopped seeing any of us. she then died and the funeral was so small, with all of her family and loved ones not present at her request, she died the way she wanted to die, alone in her own misery without anyone peeking in and giving advice, I have been very sad about her dying this way but sometimes especially when I read a post like this one, and realise their is so much more to all of this than just the cancer, there is also human feelings involved from friends and from our families, these feelings can be hurt veryceasily by just coming out with the wrong words at times. in this way it makes me wonder if my aunt Lily had been right, to end her life in solitude where noone expected anything more than she could give. just my thoughts on all of this, and thought I would share them. God bless Sandy
- By diamond
- Posted June 27, 2009 at 8:02 am
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Sandy et al.:
The responses and suggestions have been excellent and very helpful. No one needs to apologize for suggesting my wife is younger than me--she is, by two years. She does not fit the classic concept of a trophy wife, but she is my trophy wife. And yes, she is very physically activie-bicycling, swimming, walking, exercise at wellness center, etc. Good for her.
What I am trying to do is get her to understand that I just cannot do the things I used to do. I cannot surf anymore--never really could anyway. I can still boogey board and body surf, which I enjoy. I still maintain the housework, cooking, bill paying, some of the yard work (my son helps but is a bit expensive). She goes out 5-6 nights a week; most of which makes no sense to me (like shopping at the Mall and running errands that seem unnecessary--to me). She is affixed on concerts--I mean heavy duty rock and roll (actually I can't describe the music but to say that when I hear it on the radio, it makes me angry and wanting to hurt someone--terrible stuff).
Last night was another one of those evenings in which she badgered me to do something. First, it was to go out to eat; I really did not want to, but I relented and did. Sat in a smoke filled bar and ate. Starting July 1 of this year, smoking will be prohibited in all bars and restaurants, excluding private clubs. Then, she wanted me to go to a local park having a rock band with dancing. It was about 98 (with heat index), no wind, and lots of mosquitos. I refrained and watched InkHeart--an alright movie.
I used to box; competed internationally in Tae Kwon Do; played baseball (not professional); lifted weights; canoed and kayaked (not sure if really a word) frequently; and did my fishing. This damn disease really robs one of their ability to do lots of physical things--not to mention, apparently, engage in sex (not sure if more psychological than physical).
I have begun longer walks to try and gain some strength in my legs; I tried running but looked like a crazy chicken. I do some light weights--mostly arm and lateral curls; can't do push ups because of shoulder.
Anyway, thanks all for all suggestions.
Jim
- By Nitatx
- Posted June 27, 2009 at 8:19 am
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I had two bouts and part of a lung removed. I will be three years NED in August. I am still trying to build up my endurance and like you can't really enjoy a long walk as get winded....working on that. I am 71 and have decided that there are just some things I am uncomfortable doing or just don't want to do. I giggle a lot and definitely not depressed. Perhaps your wife is frightened and wanting to keep you active. I agree that she needs to know what happens to your system, bone pain, shortness of breath, shoulder pain when in bed, and so many misc. nerve damage signs popping up. You do need to work on restoring your body, but give yourself time, I improve slowly, and spend my time on people and things that are important to me. Lots of luck. When you need to sound off, this is a great place to do it. Hugs
- By Wayseeker1
- Posted June 27, 2009 at 8:26 am
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Well I have an opposite problem, my partner tends to hover, wants me to ask for her help all the time since I'm becoming tired very easily. Trouble is she has Lupus/Scleraderma and lacks energy herself. When I heard that I had been misdiagnosed, I asked for and got permission to increase my anti-depressant which has helped. Might be advisable to have your partner participate in a caregivers support group or just read some of the postings here. Good luck to you and your struggle.
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