Hi, as I said in my introduction, I am the son of a father who had multiple myeloma when he was aged 40. The myeloma was worse in his ribs and back. He had to get full body radiation and chemotherapy. He got a bone marrow transplant, before stem cell was normalised. He has survived now for almost 20 years (docs say due to his young age and fitness at the time), yet his quality of life has been very poor. He never went back to work again.
My father's back was permanently deformed, he lost height, lost thick hair, etc. His and my family's life was completely ruined. Unfortunately, my father's original family shunned and shamed him, and so only his wife (my mother) was the adult there to help. He was previously a sales person but after the illness his job prospects were very poor.
I think part of the reason my father was never motivated enough to get back to work was because of the stigma and discrimination of multiple myeloma. He became very bitter and the victim. We live in the UK and I feel the culture here is partly to blame. The good side of living in places like the UK, the USA and Australia is that you supposedly receive 'the most advanced medical care.' After being treated however, the flip side of these cultures is that you are going to be victimised, shunned and ignored. ESPECIALLY FOR MALES, you are going to have an extremely hard time.
There continues to be a huge stigma and taboo surrounding serious male illness. multiple myeloma is one of those taboos. People don't understand it fully, don't take it seriously, ridicule it, downplay it, or in some cases, exploit its weakness to over power the sufferer. It's a hideous disease, BUT MY GOD, pray you will recover in a more compassionate culture.
Thanks for listening.
Forums
-
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
That's sad to hear. Multiple myeloma isn't contagious nor a product of bad choices, so it's hard to understand why compassion wouldn't be the norm.
-
Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Multiple myeloma - problems with the culture you live in
Yes, compassion should be the norm.
A relatively young/middle-aged male faces a hideous catch-22 which is:
On the one-hand he absolutely requires;
- as much family/extended family support as he can get.
- help to get back into a job.
- help rebuild self-esteem
- help rebuild mental health
- offered financial support
BUT on the other hand, his culture says he should;
- "rebound" back as much as possible.
- deal with the problem ALONE.
- become self-reliant and self- sufficient also "as soon as possible"
- never talk about multiple myeloma to the general public as it is deemed a "private matter" and "a problem nothing to do with us"
- never be 'needy' or 'ask for help' because it is not masculine and shameful.
So overall, dependency is a big no-no. This is part of the whole problem of male cancer survivors. F#ck.
A relatively young/middle-aged male faces a hideous catch-22 which is:
On the one-hand he absolutely requires;
- as much family/extended family support as he can get.
- help to get back into a job.
- help rebuild self-esteem
- help rebuild mental health
- offered financial support
BUT on the other hand, his culture says he should;
- "rebound" back as much as possible.
- deal with the problem ALONE.
- become self-reliant and self- sufficient also "as soon as possible"
- never talk about multiple myeloma to the general public as it is deemed a "private matter" and "a problem nothing to do with us"
- never be 'needy' or 'ask for help' because it is not masculine and shameful.
So overall, dependency is a big no-no. This is part of the whole problem of male cancer survivors. F#ck.
-
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 van Cleef,
Thank you for sharing this perspective about your father. It seems to me that not only your mother is very supportive of him, but so are you too. I hope that he is doing better now, after these years with myeloma.
One thought I had when reading your posts is that your father might enjoy being part of a myeloma support group. There, people are generally quite accepting of each other. For one thing, people in support groups have a lot more in common with each other in regards to myeloma than does the vast majority of the population. Caregivers also come to support group meetings.
I have met many interesting people at my local support group, which has let me know that I am not alone in regards to the problems that myeloma can bring into one's life. We do useful work in our support group too. We put on educational events, welcome newcomers, raise funds for myeloma research, and put on an annual walk/run.
Thank you for sharing this perspective about your father. It seems to me that not only your mother is very supportive of him, but so are you too. I hope that he is doing better now, after these years with myeloma.
One thought I had when reading your posts is that your father might enjoy being part of a myeloma support group. There, people are generally quite accepting of each other. For one thing, people in support groups have a lot more in common with each other in regards to myeloma than does the vast majority of the population. Caregivers also come to support group meetings.
I have met many interesting people at my local support group, which has let me know that I am not alone in regards to the problems that myeloma can bring into one's life. We do useful work in our support group too. We put on educational events, welcome newcomers, raise funds for myeloma research, and put on an annual walk/run.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Multiple myeloma - problems with the culture you live in
Yes, your right to say myeloma/cancer support groups can help. I think my dad did go to some groups years ago, but unfortunately it led to nothing. They do have a place, and can be a great help.
Nancy (assume your female) I can tell you the consequences of having had multiple myeloma are far worse for males than females. The illness itself is as destructive to either gender, but my god, being a male and a father with it ... the worst.
Nancy (assume your female) I can tell you the consequences of having had multiple myeloma are far worse for males than females. The illness itself is as destructive to either gender, but my god, being a male and a father with it ... the worst.
-
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
Bob,
I have heard that thought expressed too (that men have a more difficult time with a cancer dx)! But, I think one cannot really know what another is thinking about, and women can also have psychological problems with having cancer of any sort.
Maybe in our current age, some of the fear and stigma is evaporating about having cancer. I think it is remarkable that your father is such a long term survivor, and probably in a support group others would like to listen to his 'journey' also. Or he or you might like to post his journey online. Just a thought though!
I have heard that thought expressed too (that men have a more difficult time with a cancer dx)! But, I think one cannot really know what another is thinking about, and women can also have psychological problems with having cancer of any sort.
Maybe in our current age, some of the fear and stigma is evaporating about having cancer. I think it is remarkable that your father is such a long term survivor, and probably in a support group others would like to listen to his 'journey' also. Or he or you might like to post his journey online. Just a thought though!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Multiple myeloma - problems with the culture you live in
Support groups suit only a percentage of people and men reluctantly relate any feelings etc let alone present to a group. Outward, confident people who enjoy telling their story are comfortable there but for many men, me, such a forum is the last thing they need.
My one visit to a group developed into a screaming match on who was the sickest, who had the better doctor and why wasn't I smiling and enjoying life. Couldn't get out quick enough.
After 35 years of work, reward, management, leading and being a male, myeloma can reduce many men to a shadow of themselves, requiring a mental adjustment and calibration of their role in the family and among friends.
I hadn't heard of myeloma when it presented in 2011. I still look in the mirror each day in shock, do what I can each day at home and sleep for hours. I watch the pink cancer with its slick promotion and wonder when men's myeloma might get a PR manager too
My one visit to a group developed into a screaming match on who was the sickest, who had the better doctor and why wasn't I smiling and enjoying life. Couldn't get out quick enough.
After 35 years of work, reward, management, leading and being a male, myeloma can reduce many men to a shadow of themselves, requiring a mental adjustment and calibration of their role in the family and among friends.
I hadn't heard of myeloma when it presented in 2011. I still look in the mirror each day in shock, do what I can each day at home and sleep for hours. I watch the pink cancer with its slick promotion and wonder when men's myeloma might get a PR manager too
-
Terrence
Re: Multiple myeloma - problems with the culture you live in
A relatively young male who gets multiple myeloma is the equivalent of taking away that man's masculinity. It blunts the knife.
It would be interesting to know what the situation here is with people's families. Are you married? Do you have kids. Because obviously getting multiple myeloma will put a huge strain on this.
To Nancy, in terms of my father's story well there's not much to tell. His survival and long-term survival (20 years) has actually been a huge curse in many ways. Because of what happened to him in he basically refused to get back into some kind of work. He became very isolated also. As a result of all this, his wife (my mother) and his son (me), were seriously disadvantaged. I grew up my entire life without a father figure/role model (i.e. an older male who works) etc. I have an older sister only and I have no uncles (bar one who lives in another country). The only other male i had was an old grandfather who was selfish and well, of no use.
It would be interesting to know what the situation here is with people's families. Are you married? Do you have kids. Because obviously getting multiple myeloma will put a huge strain on this.
To Nancy, in terms of my father's story well there's not much to tell. His survival and long-term survival (20 years) has actually been a huge curse in many ways. Because of what happened to him in he basically refused to get back into some kind of work. He became very isolated also. As a result of all this, his wife (my mother) and his son (me), were seriously disadvantaged. I grew up my entire life without a father figure/role model (i.e. an older male who works) etc. I have an older sister only and I have no uncles (bar one who lives in another country). The only other male i had was an old grandfather who was selfish and well, of no use.
-
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
Speaking for myself, I will say that multiple myeloma has NOT taken away my masculinity or any part of the man I am. Sure I have lessened abilities to do certain things. However, I am still me. I have never defined myself by my work, abilities or material things. I don't see myself as a lesser of a person because I have multiple myeloma. If I judge myself by my abilities to do certain things, then age is just as big of a culprit in destroying me and I don't subscribe to that view either.
I refuse to let a disease or circumstances or age define who I am. I am the same father and grandfather I was before diagnosis. Yes my life is different now as a result of multiple myeloma. However, when I turned 40, I couldn't do some of the things I did when I was 20. Did that make me less of a man? I don't think so at all.
My wife was diagnosed with DLBCL in 2010. Underwent chemo and beat it back. I was diagnosed with multiple myeloma in 2011. I am currently in CR. In 2012, not long after my SCT, my wife was re-diagnosed with Follicular Lymphoma. She beat it back with chemo as well. Shortly after, our son-in-law was diagnosed with Hodgkin's Lymphoma. He has beaten it back and is currently undergoing treatment in preparation for a SCT.
That brings us to this point. My wife's cancer is back for the third time. She is scheduled for a biopsy next week to determine exactly what it is so treatment with either chemo or SCT can be determined.
None of us are the same. However, we are still the same people we were before diagnosis. Cancer doesn't define any of us.
I refuse to let a disease or circumstances or age define who I am. I am the same father and grandfather I was before diagnosis. Yes my life is different now as a result of multiple myeloma. However, when I turned 40, I couldn't do some of the things I did when I was 20. Did that make me less of a man? I don't think so at all.
My wife was diagnosed with DLBCL in 2010. Underwent chemo and beat it back. I was diagnosed with multiple myeloma in 2011. I am currently in CR. In 2012, not long after my SCT, my wife was re-diagnosed with Follicular Lymphoma. She beat it back with chemo as well. Shortly after, our son-in-law was diagnosed with Hodgkin's Lymphoma. He has beaten it back and is currently undergoing treatment in preparation for a SCT.
That brings us to this point. My wife's cancer is back for the third time. She is scheduled for a biopsy next week to determine exactly what it is so treatment with either chemo or SCT can be determined.
None of us are the same. However, we are still the same people we were before diagnosis. Cancer doesn't define any of us.
-
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
Bobvancleef38 wrote: "Hi, as I said in my introduction, I am the son of a father who had multiple myeloma when he was aged 40. The myeloma was worse in his ribs and back. He had to get full body radiation and chemotherapy. He got a bone marrow transplant, before stem cell was normalised. He has survived now for almost 20 years (docs say due to his young age and fitness at the time), yet his quality of life has been very poor."
Hi Bob, May I ask, did your Dad ever take maintenance therapy or any additional chemo after the one marrow transplant? Might I ask what you mean by poor quality of life.
Hi Bob, May I ask, did your Dad ever take maintenance therapy or any additional chemo after the one marrow transplant? Might I ask what you mean by poor quality of life.
26 posts
• Page 1 of 3 • 1, 2, 3