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Re: How can we care for the caregivers?
Lisa, I so agree. It is important not to get lost in the medical and keep the relationship going as normal as possible.
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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?
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.
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.
Re: How can we care for the caregivers?
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
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
Re: How can we care for the caregivers?
Ladyaero wrote:
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.
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.
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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?
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.
Re: How can we care for the caregivers?
Thank you. Yes, it helps.
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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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