57 replies to this topic

[tazdad08]

I have seen post where people say that there spouse/other half has left them because they couldnt handle the stress of the disease. But how many of us has drifted away from our other half because of what we are dealing with? I don't blame it on depression. I think it is more of too much pressure to provide, not knowing what my role is in life, or maybe just ever changing desires. Am I alone in this struggle? If its not too personal, share your thoughts about the root cause of your struggle. 

[JPD]

Well, you hit on three big areas:  the pressure of dealing with it, speculating on your "role" in life, and changing desires.  The first one stands alone, I see the second two as being closely related.  The pressure is what it is - we are expected (for the most part) to just "get on with life" - as Ive said here before "take your pill, live your life".*  But its not that easy, of course.

 

The second two things are related because after getting such a diagnosis - it accelerates the self-examination of our own lives & makes us wonder "what have I done with my life" and/or "what do I do with my life now".  We've suddenly been shook out of our comfortable little American (Western) nothing goes wrong ever eggshell mindset.  We realize damn quick - HOLY SHIT, I AM NOT INDESTRUCTABLE (Memento Mori!)... so, I better get on with living MY life as I want to live it. 

 

Anyway, my struggle bounces from being cynical/defeatist/nihlist ("I dont give a shit, nothing matters") to being inspired ("live every day to the fullest - savor every moment".

 

 

*I stole this

[chrissy778]

I feel sorry for my husband because he tries very hard, and I am embarrassed to say sometimes I worry so much it keeps me from enjoying life. I am so busy with the what ifs and health anxiety that I sometimes forget how lucky I am to have this second chance on life. A year and a half ago I would have done anything to be where I am now and sometimes I take it for granted. I need to remind myself to live and be loving and kind and stop worrying about if I am going to die and being negative about things that are not important.

[Billie Murawski]

Ron has been very supportive with me, sometimes I feel so guilty because maybe I'm not trying hard enough to do the things I used to do. I don't know if it's my age or cml or depression I just can't seem to function very well right now I feel like a motionless blob. When everybody says they have fatigue does that mean no energy but they can still function or they just can't move. I know I have to get outside, but we had another 3 inches of snow this morning I feel like my body went on strike! UGGH (thanks for letting me vent).

[chrissy778]

Billie, I am a blob most of the time also lol This was a very long depressing winter. My husband started walking and I am such a loser he asks me to go and I will say no with out trying. This posts makes me realize I need to change.  

[Billie Murawski]

Billie, I am a blob most of the time also lol This was a very long depressing winter. My husband started walking and I am such a loser he asks me to go and I will say no with out trying. This posts makes me realize I need to change.

chrissy, I'm so glad I'm not the only one (now we have two blobs) maybe we can support each other and cheer each other on. It.s a half mile around the block and as soon as it warms up I'm going to walk everyday, and you can yell at me if I don't do it. I can see it now I'll make it halfway around and have to give myself cpr. I used to walk a lot no matter what the weather was like, but now I get so cold I can't stand it. Does the cold affect you also? I wonders if tki's contribute to it. Gotta blame something .

[pammartin]

The CML changed my marriage in many ways.  I was always the 'doer'.  I started projects, I tore things apart, and I made the plans for doing things.  My husband helped me finish a project, put whatever back together, and go along with the plans I made.

 

Since I have been ill I don't have the energy to do projects so much anymore.  I don't bother tearing things apart because I don't want the mess or waiting to put them back together.  We rarely go out with other couples, we enjoyed them all but we have stepped away from participating in that without really acknowledging it.  We have turned into a couple that lives together but in many ways we live separate lives.  It sounds like it is a negative but it may be more a sadness.

 

We don't fight, we don't argue.  Today was our anniversary, we spent it traveling to Cleveland Clinic for CML oncologist because my local one is not comfortable seeing me anymore.  On the way home we were both worried about our dogs, they were alone at the house for over 7 hours.  They probably had their paws crossed.  We stopped at Quaker Steak and Lube and had an awesome wing buffet.  I think we told each other happy anniversary twice over the course of the day.  At this point in life, I will take comfortable.

[chrissy778]

Billie, I am with you we can motivate each other and we will drag Pam along with us, lol. Pam many of the feelings you described I have felt or feel also. We should all try to break this cycle together. We need to be strong even though its not easy but with encouragement and ideas I think we can help each other. At least we are aware and that is a great start.

[Billie Murawski]

Happy Anniversary Pammie           !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

You have a way with words, You put it so eloquently our lives are different but we can live comfortably. Maybe we're to hard on ourselves, I too was the doer my husband never knew what I would be up to when he came home from work, and like you I don't want to start any projects and make a mess. I really do want to sell this house, Ron doesn't. Maybe he'll change his mind when summer comes and he realizes how much work is involved. He has been out of it for over two years so he's in for a rude awakening. I want to downsize and move into a condo next to a restaurant!

[chrissy778]

Here is a start, you pick one for everyday of the month or you can pick as may as you want.

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[Billie Murawski]

Here is a start, you pick one for everyday of the month or you can pick as may as you want.

I love all of them, I'll let you know how I make out! Thanks chrissy

[Gail's]

Happy anniversary Pam! I love the list of fun things to do, Chrissy. When I saw the one about reading a book together, I had to laugh. When our son was a teen, he and his dad ended up reading the same paperback. Since my son was farther into the book, they tore it apart so my husband could read while my son finished the book! Smart thinking! Billie, I've tried to hit on what is different about the fatigue of cancer and finally decided it's tiredness that doesn't go away with sleep. It's like my mind is still awake while my muscles are worn out. Try not to be hard on yourself but give yourself a big pat on the back while you work down Chrissy's list.

[dede5]

My situation is similar to all of these. When I was diagnosed, I just shut down. Most of my family lives in denial, and they insist that I do things I don't want to do, so they can continue to deny a problem. Sometimes it's a good thing and I enjoy myself, but mostly just annoying because I would rather stay in pj's and wrapped in a blanket. My husband is the most understanding and just goes along with whatever I do or don't want to do. He indulges me and supports me, when I give very little in return. I can't be what I once was, but I appreciate him more than he will ever know. He's my rock.

[alexamay09]

My husband has gone through my breast cancer diagnosis then my CML.  He behaves as if neither had ever happened!  I guess this is good?

 

alex

[Dona_B]

TazDad08,

I was thinking about your question over the past couple days and realized it's ironic. The shoe is on the other foot now. The first half of my marriage I was very unhappy about how much time my husband spent helping his folks. Then they became invalids for years. They did not want to go into assisted living or a nursing home. It was very time consuming and I resented the unrealistic expectations put on him by both his parents and his siblings. The second half the shoe is on the other foot.  And the thing I hated the most could very well be the thing that's holding us together and I'm thankful to have stuck it out.

[hannibellemo]

I was very touched. Steve lives and works away from home Monday through Thursday so he hasn't always been here, but he was always here when I needed him most. He told me he cried when they talked about Gleevec on "Cancer: The Emperor of All Maladies". He gets more emotional about my CML then I do!

[Billie Murawski]

Thank You Taz,

   This post has got us all thinking, sometimes we are to hard on ourselves, the reality that we have cancer,and thankfully it's treatable.

but we still have to cope with the side-effects and it's pretty hard to tell our loved ones we feel like crap when we look healthier than them. I'm really screwing this up anyway that C word is always in our head and every crazy thing we feel makes us wonder if we have had a relapse or another kind of C. This is the third time I've played around with C and it's wearing me out. If we could only find the right words!

[Billie Murawski]

I was very touched. Steve lives and works away from home Monday through Thursday so he hasn't always been here, but he was always here when I needed him most. He told me he cried when they talked about Gleevec on "Cancer: The Emperor of All Maladies". He gets more emotional about my CML then I do!

That's wonderful Pat to have that kind of support, we all know how terrific you are, and it's great to hear that Steve thinks so too.

[hannibellemo]

That's wonderful Pat to have that kind of support, we all know how terrific you are, and it's great to hear that Steve thinks so too.

Thanks, Billie, I think we are all pretty terrific on here (and I know you do, too)! Everyone has something to offer and you keep everyone in stitches with your humor and "down home" wisdom. Not everyone can be brilliant about our disease like Trey is, but we all do what we can to lift everyone's burden because we understand.

[pammartin]

Very well said, Pat.  

 

Billie, if I don't start using the restroom before I read your posts I am going to have to buy protective under garments.  My bladder isn't as good as it used to be.  I am too old and too old to admit to peeing my pants.