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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Re: How can we care for the caregivers?

by dogmom on Sun Apr 03, 2016 1:27 pm

Lisa, I so agree. It is important not to get lost in the medical and keep the relationship going as normal as possible.

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58

Re: How can we care for the caregivers?

by Ladyaero on Mon Apr 11, 2016 5:03 pm

Having the outlet of a counselor has been a great help for me (I see her about once a month).

My husband was diagnosed 6 years ago and we have never been able to go more than a few months without him needing treatment of some sort (he relapsed from his SCT in ~7 months, but he had other medical troubles during that time). I try very hard not to "borrow trouble" by going through what-ifs, and my husband is actually pretty self sufficient (read: stubbornly independent), so I'm not under a lot of pressure as to actual caregiving.

BUT, it is incredibly difficult to watch your spouse suffer, it is like a punch in the stomach every time you think he's in the clear and another tumor pops up (he has had dozens of extramedullary tumors, despite having an m-spike of 0 since his transplant 4 years ago), it is heartbreaking to see the effect it has on his relationship with our son (who was 9 at the time of diagnosis), it's hard to be the sole breadwinner and primary parent.

So, having someone to whom I can say "this is HARD" without feeling like I'm whining over my small part in his fight is a huge weight off my shoulders.

Ladyaero

Re: How can we care for the caregivers?

by mrozdav on Mon Apr 11, 2016 5:36 pm

Hi, Ladyaero. I am sorry that you and others have to face these so difficult situations.

You say that your husband has had a zero M-spike these four years and yet has had numerous extramedullary tumors. Did his immunofixation (IFE) test also not indicate detectable myeloma? Does he have a form of myeloma where these tests, i.e., M-spike and IFE have appicability? Thanks. m

mrozdav

Re: How can we care for the caregivers?

by wekebu on Wed Apr 13, 2016 7:17 pm

Ladyaero wrote:
I try very hard not to "borrow trouble" by going through what-ifs.

Oh ... what if I had started buying organic produce 20 years ago, what if he never bought that damn diesel truck 28 years ago, what if we had cut out processed meats earlier? I can drive myself crazy, then I dismiss it as something we'll not know in my lifetime.

wekebu
Name: Wendy
Who do you know with myeloma?: Hubby
When were you/they diagnosed?: Jan 2016
Age at diagnosis: 55

Re: How can we care for the caregivers?

by Kperl on Fri May 06, 2016 2:49 pm

If it makes anyone feel any better, my husband got multiple myeloma after 25+ years of being a clean living vegetarian. It's a great skill not to practice "if only," learned gradually through time. Not that I'm that good at it.

Kperl

Re: How can we care for the caregivers?

by wekebu on Fri May 06, 2016 7:16 pm

Thank you. Yes, it helps.

wekebu
Name: Wendy
Who do you know with myeloma?: Hubby
When were you/they diagnosed?: Jan 2016
Age at diagnosis: 55

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