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Re: Multiple myeloma - problems with the culture you live in
No he didn't have any other therapy. By poor quality of life, I believe a man who never works again and still relatively young, that's very unhealthy.
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Bobvancleef38 - Who do you know with myeloma?: My father
- When were you/they diagnosed?: 1994
- Age at diagnosis: 40
Re: Multiple myeloma - problems with the culture you live in
Hi Bob. I'm sorry for the very negative impact multiple myeloma had on your entire family. Treatments are so different now. Has your father been evaluated lately? It's possible that with the new medications, his quality of life will improve. (Yes, I know, they all have side effects.)
Speaking for myself, I was a single mom with a daughter graduating from college when I was diagnosed. Myeloma certainly made me re-think my priorities and change what I was going to do now that my daughter had graduated, but it didn't change who I was. Granted, myeloma did not affect my spine or kidneys, and I didn't break any bones, so I was lucky. However, I was also very sick (stage 3) when diagnosed.
I was determined not to let it beat me. I was able to get to complete remission, which lasted for more than 2 years, and am still more than 95% in remission. I work, I have a social life, I garden, I take care of my house, I travel, and I have a life with my daughter.
I think what I'm saying is that state of mind is very important when dealing with a disease like myeloma.
Has you father had a mental health evaluation?
Speaking for myself, I was a single mom with a daughter graduating from college when I was diagnosed. Myeloma certainly made me re-think my priorities and change what I was going to do now that my daughter had graduated, but it didn't change who I was. Granted, myeloma did not affect my spine or kidneys, and I didn't break any bones, so I was lucky. However, I was also very sick (stage 3) when diagnosed.
I was determined not to let it beat me. I was able to get to complete remission, which lasted for more than 2 years, and am still more than 95% in remission. I work, I have a social life, I garden, I take care of my house, I travel, and I have a life with my daughter.
I think what I'm saying is that state of mind is very important when dealing with a disease like myeloma.
Has you father had a mental health evaluation?
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Multiple myeloma - problems with the culture you live in
Yes, darnold your state of mind is very important with myeloma. Unfortunately, for some reason my father's self-esteem was just completely destroyed. Of course, with his back (deformed) and ribs being badly attacked by the cancer, there was never going to be an easy solution.
As far as I know he has never had an official mental health examination, although he has spoke to doctors a number of times over the years. In our culture (the UK) there still seems to be this norm against males seeking help from doctors. I don't know if he felt very uncomfortable talking to doctors about his situation or if the doctors themselves were uncomfortable or uninterested (i.e. 'not my problem' attitude). I honestly don't know for sure. There's lots of factors, but something in his mind was terribly amiss.
Also, darnold, can I ask what job you did after your illness? Also, can I ask what age you were when you got your illness?
As far as I know he has never had an official mental health examination, although he has spoke to doctors a number of times over the years. In our culture (the UK) there still seems to be this norm against males seeking help from doctors. I don't know if he felt very uncomfortable talking to doctors about his situation or if the doctors themselves were uncomfortable or uninterested (i.e. 'not my problem' attitude). I honestly don't know for sure. There's lots of factors, but something in his mind was terribly amiss.
Also, darnold, can I ask what job you did after your illness? Also, can I ask what age you were when you got your illness?
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Bobvancleef38 - Who do you know with myeloma?: My father
- When were you/they diagnosed?: 1994
- Age at diagnosis: 40
Re: Multiple myeloma - problems with the culture you live in
Can I ask what gender each one of you is. Also, what did your partner and children make of your illness?
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Bobvancleef38 - Who do you know with myeloma?: My father
- When were you/they diagnosed?: 1994
- Age at diagnosis: 40
Re: Multiple myeloma - problems with the culture you live in
Hi Bob,
I'm a male and was diagnosed at 47. My kids are grown but were devastated. However, my spouse had a bit of a different reaction as she was also a cancer patient. Her reaction was more like disbelief. It's strange having the same oncologist.
My wife still works as a preschool teacher and loves what she does. I, however, am disabled from all of the bone damage in my lower spine. I am by no means happy with my situation and would love to be able to work again but I refuse to allow this monster to destroy whatever time I have left with my family.
I'm sorry things have been so hard on your father. This disease has no mercy.
I'm a male and was diagnosed at 47. My kids are grown but were devastated. However, my spouse had a bit of a different reaction as she was also a cancer patient. Her reaction was more like disbelief. It's strange having the same oncologist.
My wife still works as a preschool teacher and loves what she does. I, however, am disabled from all of the bone damage in my lower spine. I am by no means happy with my situation and would love to be able to work again but I refuse to allow this monster to destroy whatever time I have left with my family.
I'm sorry things have been so hard on your father. This disease has no mercy.
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Multiple myeloma - problems with the culture you live in
Hi Bob. I'm hesitating to answer your questions because my situation is so different from your father's, and I consider myself very blessed (even with myeloma!!). I was 52 when I was diagnosed 5 years ago. I am a single mom. As I indicated in my previous post, my daughter was about to graduate from college when I was diagnosed. I actually ended up in the hospital with hypercalcemia and missed her graduation.
My daughter was upset that I have cancer but is incredibly supportive. For example, she insisted on being my sole caretaker during my stem cell transplant. She lives with me while she is in a doctoral program. We're kind of symbiotic. She does certain things for me that I can't or shouldn't do. And she still yells at me if she thinks I've been doing too much yardwork.
My family doesn't live near us but has been supportive. Well, almost. In my mother's case, my being sick was (and still is) all about her, so I don't count on her for support. Friends, colleagues from work, and friends from my synagogue community were amazingly supportive and will be again if I relapse.
I am a policy analyst for the federal government, which is the kind of job that can be done by telework. At the time I was diagnosed, I was also chief of staff for the office I worked for and had to give up that role.. However, I was able to continue working on a part-time basis during treatment and have been working full time since recovering from my SCT.
My daughter was upset that I have cancer but is incredibly supportive. For example, she insisted on being my sole caretaker during my stem cell transplant. She lives with me while she is in a doctoral program. We're kind of symbiotic. She does certain things for me that I can't or shouldn't do. And she still yells at me if she thinks I've been doing too much yardwork.
My family doesn't live near us but has been supportive. Well, almost. In my mother's case, my being sick was (and still is) all about her, so I don't count on her for support. Friends, colleagues from work, and friends from my synagogue community were amazingly supportive and will be again if I relapse.
I am a policy analyst for the federal government, which is the kind of job that can be done by telework. At the time I was diagnosed, I was also chief of staff for the office I worked for and had to give up that role.. However, I was able to continue working on a part-time basis during treatment and have been working full time since recovering from my SCT.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Multiple myeloma - problems with the culture you live in
Hi Bob,
When I was diagnosed at 43 my children were 6 & 10. At the time of diagnosis (we needed the money) I was in charge of winding down production for our company, working part-time as a university lecturer/biochemistry demonstrator, giving gluten free cooking classes, doing a part-time course in hospitality, being a parent helper in my youngest child's classroom, working as a consultant for an after hours agricultural helpline while taking care of the children's after school activities & the shared household things with my husband. My spine was fractured as was a rib (yes, I was in pain).
Have I worked again in any of the above? Not the way I used to, and I am unlikely to. Lecturing requires standing for considerable times (my back is not up to it) & contact with students who may be harbouring all sorts of viruses (I am on immunosuppressors after my allograft). I can't see myself giving cooking classes or helping in classrooms for the same reasons.
I am a practical person with a dogged determination for finding solutions to problems. If I can't give cooking classes face to face, is there another way that I can present the information? It is only this year, 5 years after diagnosis, that I have relaunched our company's website - it now contains recipes & information.
That's me - but what about my family? Along my family's myeloma journey we have had some really rough patches, I have been close to death twice. We had to tell the children when they were 8 and 12 that there was to be no more treatment. I was told by one of the oncologists to go out and enjoy things now with my family. The whole family is thankful that the decision was changed.
Has it affected the children? Yeah. But we have discussed it as a family and when necessary sought professional help. As each year passes that I am still alive, I see them learning more about life and how to find their own solutions to problems. We have also been fortunate to have the support of our families and local community.
My husband, fantastic guy, kept himself and the family going when I was in hospital and all through my treatment. He suffers from depression. I think over here (Australia) there is more of a perceived stigma associated with depression rather than a cancer diagnosis.
Low self-esteem can be associated with depression. If I had a friend who I knew had low self-esteem (depression) and then they were diagnosed with cancer, I would try and find a way to get them to seek professional help.
All the best for you and your family,
Libby
When I was diagnosed at 43 my children were 6 & 10. At the time of diagnosis (we needed the money) I was in charge of winding down production for our company, working part-time as a university lecturer/biochemistry demonstrator, giving gluten free cooking classes, doing a part-time course in hospitality, being a parent helper in my youngest child's classroom, working as a consultant for an after hours agricultural helpline while taking care of the children's after school activities & the shared household things with my husband. My spine was fractured as was a rib (yes, I was in pain).
Have I worked again in any of the above? Not the way I used to, and I am unlikely to. Lecturing requires standing for considerable times (my back is not up to it) & contact with students who may be harbouring all sorts of viruses (I am on immunosuppressors after my allograft). I can't see myself giving cooking classes or helping in classrooms for the same reasons.
I am a practical person with a dogged determination for finding solutions to problems. If I can't give cooking classes face to face, is there another way that I can present the information? It is only this year, 5 years after diagnosis, that I have relaunched our company's website - it now contains recipes & information.
That's me - but what about my family? Along my family's myeloma journey we have had some really rough patches, I have been close to death twice. We had to tell the children when they were 8 and 12 that there was to be no more treatment. I was told by one of the oncologists to go out and enjoy things now with my family. The whole family is thankful that the decision was changed.
Has it affected the children? Yeah. But we have discussed it as a family and when necessary sought professional help. As each year passes that I am still alive, I see them learning more about life and how to find their own solutions to problems. We have also been fortunate to have the support of our families and local community.
My husband, fantastic guy, kept himself and the family going when I was in hospital and all through my treatment. He suffers from depression. I think over here (Australia) there is more of a perceived stigma associated with depression rather than a cancer diagnosis.
Low self-esteem can be associated with depression. If I had a friend who I knew had low self-esteem (depression) and then they were diagnosed with cancer, I would try and find a way to get them to seek professional help.
All the best for you and your family,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Multiple myeloma - problems with the culture you live in
I believe that a diagnosis at a young age and a severe illness that results in permanent disability is devastating for both men and women. Regardless of culture, young adults are expected to be "productive." A permanent severe disability negates such productivity -- whether as a paid employee or in some other role -- and makes one feel less than a person.
Perhaps there is a culture which doesn't judge one for not being a productive adult, but there are not many.
I think another critical variable is whether or not the ill person has caretakers and loved ones who can be both physically and emotionally supportive over years of difficulty. I have heard of more than one man who walked out on a woman who was diagnosed with cancer, yet women often have good social support networks.
So it all depends.
Rather than asking which gender has more difficulty coping with a devastating illness, I think it's more useful to talk about what can be done for the unfortunate persons who experience that situation, as well as for their caretakers and family members.
What I hear in Bob's question and replies is ongoing anguish (and the accompanying anger and grief) about his father's and his own experience.
So I have questions for Bob: What would have helped you 20 years ago? And what would help you now?
Perhaps there is a culture which doesn't judge one for not being a productive adult, but there are not many.
I think another critical variable is whether or not the ill person has caretakers and loved ones who can be both physically and emotionally supportive over years of difficulty. I have heard of more than one man who walked out on a woman who was diagnosed with cancer, yet women often have good social support networks.
So it all depends.
Rather than asking which gender has more difficulty coping with a devastating illness, I think it's more useful to talk about what can be done for the unfortunate persons who experience that situation, as well as for their caretakers and family members.
What I hear in Bob's question and replies is ongoing anguish (and the accompanying anger and grief) about his father's and his own experience.
So I have questions for Bob: What would have helped you 20 years ago? And what would help you now?
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: Multiple myeloma - problems with the culture you live in
Well, 20 years ago I was 5 and a half years old (my sister 7 and a half), so we, the kids were in no position to help. The biggest things that would have helped would have been my dad's sisters helping him out, ie. fully supporting him (instead of saying 'we don't want this') plus financial support from them. The money would have bought the family time; ie. my mother would not have been forced back into full-time, we wouldn't have had to rush selling the house etc.
So basically, the full support of my dads family.
In regards to what could help/what can be done about it. Absolutely nothing can be done now, that's the problem.
So basically, the full support of my dads family.
In regards to what could help/what can be done about it. Absolutely nothing can be done now, that's the problem.
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Bobvancleef38 - Who do you know with myeloma?: My father
- When were you/they diagnosed?: 1994
- Age at diagnosis: 40
Re: Multiple myeloma - problems with the culture you live in
Hi Bob, It has been very poignant reading about your relationship with your father and the rest of your family. It must have been very difficult for you growing up to see your father and mother struggling with his myeloma. From what I know of myeloma treatments back in that time, it was very tough, and one was lucky if one survived.
What I think would be tragic is if you were to let this family situation cause you to be unhappy too. Obviously you are supportive of your father, and as a caregiver, you need to look after your own emotional well being also. Maybe some sort of counselling for caregivers would help you too.
Wishing you all the best.
What I think would be tragic is if you were to let this family situation cause you to be unhappy too. Obviously you are supportive of your father, and as a caregiver, you need to look after your own emotional well being also. Maybe some sort of counselling for caregivers would help you too.
Wishing you all the best.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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