Hi Bob.
I am sorry to hear about your father's experience being so hard on him and your entire family. My sympathies to him and the all rest of us living with this disease.
I suggest you look at things from a different angle, instead of continuing to emphasize that "your father's experience is the worst because he is a man, father, with no support etc." Not to downplay his experience, but many of us, have had difficult consequences we have had to deal with due to myeloma. Regardless if we are a man or a women. They may not be the same as your dad's but trust me when I say they can be equally devastating on us and our families. Many of us have had our careers disrupted, have dealt with isolation due to a diagnosis, have had our fertility stolen from us so that we can’t even have kids. Yes Myeloma patients are most often in a later stage of live, but there are an increasing number of younger patients like your father and myself living with this disease.
places like this forum are where we find support and understanding and I feel this is generally a positive forum, unlike the other poster's negative support group experience.
No one's life will ever be the same once you hear the words your have cancer.
We can never truly understand the effects of myeloma on other people, because we are not in their shoes.
Forums
Re: Multiple myeloma - problems with the culture you live in
I believe something could help you now Bob. It seems to me that you came here for support, that may help you. I'm sorry for the effect your fathers illness has had on you and your family. But it sounds like its still dragging you down 20 years later. Have you sought out any type of mental health counseling? You could very well be depressed. You could very well just need to talk about this now that you are an adult yourself. But please don't let this define the rest of your life for you. Continue to seek out the type of help you need to make your own life more fulfilling, maybe you will be an example to your father.
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cindyl
Re: Multiple myeloma - problems with the culture you live in
Well, unfortunately me and my family already had enough problems without myeloma happening. I have struggled with a bad case of love-shyness (Google the term) for many years.
A number of men struggle with love-shyness yet it get little attention. Love-shyness is prolonged, sometimes permanent datelessness or partnerlessness. Some love shy males have had a previous partner, but for various reasons have been unable to attain another partner in their lifetime. Other love-shys have always been without a partner and instead look to escort services or overseas prostitutes to fulfil their sex lives. Regardless, love shy males do struggle to find love. I'm going a bit off-topic here...
Getting back to the culture thing, there definitely seems to be a stigma surround a younger person with cancer. Say, for example, a male cancer survivor goes into a local bar; people there just don't want to hear about the in and outs of multiple myeloma. They change topic or they say what's that got to do with me. It has a a big 'taboo' sign above it in our culture.
A number of men struggle with love-shyness yet it get little attention. Love-shyness is prolonged, sometimes permanent datelessness or partnerlessness. Some love shy males have had a previous partner, but for various reasons have been unable to attain another partner in their lifetime. Other love-shys have always been without a partner and instead look to escort services or overseas prostitutes to fulfil their sex lives. Regardless, love shy males do struggle to find love. I'm going a bit off-topic here...
Getting back to the culture thing, there definitely seems to be a stigma surround a younger person with cancer. Say, for example, a male cancer survivor goes into a local bar; people there just don't want to hear about the in and outs of multiple myeloma. They change topic or they say what's that got to do with me. It has a a big 'taboo' sign above it in our culture.
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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
In my experience with myeloma I have never experienced any discrimination from having cancer. At my work they were very concerned about the possibility of losing me and my not coming back. If anything now I have to sometimes remind my employer that I still have what is considered a terminal cancer and they should not put me in role where I could be a single point of failure or move me into any kind of long term leadership position as I may have to drop out again at any time. My problem is not being shunned but having more responsibility put on me that may become a problem when I eventually go through a relapse period.
The only stigma as a young male I have encountered is when people do learn that I have cancer. If I do not tell them it is myeloma, the assumption is that I have either prostate or colon cancer, which is not really a stigma. Then I have to explain what myeloma is -- few have ever heard of it.
Myeloma is not a “male” disease and I do not see how it is any worse on men than women. Imagine being a women and pregnant with myeloma. I have heard of a few cases of this and I am sure there are more. I do see how myeloma can be far tougher when you are a parent with young children than having no children like myself.
My grandmother passed on a bit of wisdom to me before she passed away. She learned as she got older that young people do not like to be around old people complaining about their health problems. She learned that if you are old and want to have relationships with younger people, you do not talk about your personal problems and aliments unless asked and try to keep the conversation about more cheerful subjects that are not depressive downers. There is only so much of this people can take.
I try to do the same when I am talking about myeloma. I try to do it with an optimistic tone about the progress being made to treat the disease and how well I am doing if I am doing well. I do not believe people go to a bar or social place, at least the ones I go to, to hear depressing tales of cancer or other depressing subjects. They are there to socialize and have a good time.
The only stigma as a young male I have encountered is when people do learn that I have cancer. If I do not tell them it is myeloma, the assumption is that I have either prostate or colon cancer, which is not really a stigma. Then I have to explain what myeloma is -- few have ever heard of it.
Myeloma is not a “male” disease and I do not see how it is any worse on men than women. Imagine being a women and pregnant with myeloma. I have heard of a few cases of this and I am sure there are more. I do see how myeloma can be far tougher when you are a parent with young children than having no children like myself.
My grandmother passed on a bit of wisdom to me before she passed away. She learned as she got older that young people do not like to be around old people complaining about their health problems. She learned that if you are old and want to have relationships with younger people, you do not talk about your personal problems and aliments unless asked and try to keep the conversation about more cheerful subjects that are not depressive downers. There is only so much of this people can take.
I try to do the same when I am talking about myeloma. I try to do it with an optimistic tone about the progress being made to treat the disease and how well I am doing if I am doing well. I do not believe people go to a bar or social place, at least the ones I go to, to hear depressing tales of cancer or other depressing subjects. They are there to socialize and have a good time.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Multiple myeloma - problems with the culture you live in
Not always, people in pubs often seek refuge there, to drink away their problems. Many people bemoan any problems they have in their life whilst also talking about their positive experiences. Cancer should be openly discussed a lot more. Even if only for 5 minutes.
Another thing I discovered about my dad was that (due to his back being deformed and very weak) if he was in a situation where he was in a fist fight or pushed over (be it an accident or deliberately) there was always a very good chance he would become paralysed (in a wheelchair). He always avoided male environments (pubs, sports venues, etc.) and I know it was because if he was in an argument with a guy or if he was in the wrong place at wrong time he would face the usual "fight like a man," "stand up for yourself" norm in which he would have been completely powerless. Even being lightly pushed over or falling to the ground could have led to paralysis.
That's a very frightening thing to know your body (back) is extremely fragile at all times (that's very hard for a man to live with in our culture). So yeah, he was always living on edge, always living in fear in whatever situation he was in.
Another thing I discovered about my dad was that (due to his back being deformed and very weak) if he was in a situation where he was in a fist fight or pushed over (be it an accident or deliberately) there was always a very good chance he would become paralysed (in a wheelchair). He always avoided male environments (pubs, sports venues, etc.) and I know it was because if he was in an argument with a guy or if he was in the wrong place at wrong time he would face the usual "fight like a man," "stand up for yourself" norm in which he would have been completely powerless. Even being lightly pushed over or falling to the ground could have led to paralysis.
That's a very frightening thing to know your body (back) is extremely fragile at all times (that's very hard for a man to live with in our culture). So yeah, he was always living on edge, always living in fear in whatever situation he was in.
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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
Slash/burn/poison ... that's the treatment for multiple myeloma. Surely, we've come up with something more cutting-edge than that. Completely destroying a man's immune system, having it build up again naturally only to a weak level, leaving endless side effects and symptoms of daily pain. That's hardly an "effective" treatment.
High dosage chemotherapy and radiation ... that's all we've got? Bull.
(I've done a hell lot of research, there's no way there aren't other "ways" to treat such a severe cancer.)
High dosage chemotherapy and radiation ... that's all we've got? Bull.
(I've done a hell lot of research, there's no way there aren't other "ways" to treat such a severe cancer.)
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Bobvancleef38 - Who do you know with myeloma?: My father
- When were you/they diagnosed?: 1994
- Age at diagnosis: 40
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