Good Evening,
I seem to find myself convincing myself I will die from cancer every time I hear that someone else has sucuumed from cancer. Is this totally the incorrect way to think?
I am rather young (36) and have had this disease for 4 years now. I am doing great, but am going thru a very very slow relapse. I am very worried what the future holds, but I need to start believing I am not a statistic!
Forums
Re: The Grim Reaper
You are not a statistic. None of us are. And when you think of it, we are in a whole new world in the treatment of myeloma. We have no idea what the outer limits are yet. More and more people are sustaining longer remissions. There is hope. It is natural to wonder and ultimately we must make peace with our mortality. But it does not mean death is right around the corner. There is hope.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: The Grim Reaper
I had an interesting discussion with my specialist today about the cancer and the fact that the younger you are with an incurable cancer the more likely it is that the cancer will kill you before something else does. Basically as it stands at the moment once you have multiple myeloma you will always have it and in all likely hood, be it five, ten, twenty or even thirty years when you pass it will likely be from the cancer or something the cancer has caused. Does that mean that we are terminally ill or is there another way to look at it? In some cases it appears to be possible to lead a life as long as you would have, had you not had this disease, while some, sadly will pass well before their time.
I have had a lot of difficulty getting my head around the diagnosis, in part because there are no set answers, no reliable prognosis for any individual. It seams that some people respond very well to treatment and enjoy very long remissions, sometimes stretching into decades while others need to battle with no treatment ever being wholly successful. Not knowing which you are can be very hard. I don't know about how others feel but sometimes I swing between feeling as if I will beat this and be here for decades, other times I feel as if its almost over and fear I wont see my loved ones again, that everything thing I do could be the last time I do that thing. Mostly I just wish I knew how long so I could plan and get my affairs in order so as to better enjoy the time I have left.
I have had a lot of difficulty getting my head around the diagnosis, in part because there are no set answers, no reliable prognosis for any individual. It seams that some people respond very well to treatment and enjoy very long remissions, sometimes stretching into decades while others need to battle with no treatment ever being wholly successful. Not knowing which you are can be very hard. I don't know about how others feel but sometimes I swing between feeling as if I will beat this and be here for decades, other times I feel as if its almost over and fear I wont see my loved ones again, that everything thing I do could be the last time I do that thing. Mostly I just wish I knew how long so I could plan and get my affairs in order so as to better enjoy the time I have left.
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: The Grim Reaper
Paul,
I understand your point about swinging from one extreme to the other. The reality is that none of us, whether we have myeloma or not, knows how long we have. I can remember periodically before my diagnosis suddenly having that wave of fear that I might go at any time and not have the opportunity to do and see all of the things that I wanted to do and see.
The only difference post diagnosis is that we now believe that we know what will be the cause of our demise. Really, all this means is that the unknown that was always there has more of a face to it.
But because myeloma is such a diverse disease and affects us in different ways, we really don't know much more about our fate after diagnosis than we did before. I think that is important to keep that in mind to temper the panic we sometimes feel when our condition seems to be taking a turn for the worse.
Sure we are in a fight and must be vigilant. But no more so than we need to be about our health in general to maximize our chances for a long and productive life.
I understand your point about swinging from one extreme to the other. The reality is that none of us, whether we have myeloma or not, knows how long we have. I can remember periodically before my diagnosis suddenly having that wave of fear that I might go at any time and not have the opportunity to do and see all of the things that I wanted to do and see.
The only difference post diagnosis is that we now believe that we know what will be the cause of our demise. Really, all this means is that the unknown that was always there has more of a face to it.
But because myeloma is such a diverse disease and affects us in different ways, we really don't know much more about our fate after diagnosis than we did before. I think that is important to keep that in mind to temper the panic we sometimes feel when our condition seems to be taking a turn for the worse.
Sure we are in a fight and must be vigilant. But no more so than we need to be about our health in general to maximize our chances for a long and productive life.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: The Grim Reaper
Hi guest!
It is very scary, the unknown! I had a discussion with my mom's doctor a few weeks ago (he is a general oncologist). He said he has one patient currently in a 6 year remission, one patient is only 28, he has only had one patient ever who did not respond to RVD, and he said he treated one patient for 19 years, just as a sample of his experience.
Hang in there! There is hope - it's the uncertainty that is scary.
It is very scary, the unknown! I had a discussion with my mom's doctor a few weeks ago (he is a general oncologist). He said he has one patient currently in a 6 year remission, one patient is only 28, he has only had one patient ever who did not respond to RVD, and he said he treated one patient for 19 years, just as a sample of his experience.
Hang in there! There is hope - it's the uncertainty that is scary.
Re: The Grim Reaper
I think you need to have faith in the calender. It has been true in the past that cancer has had the upper hand when it came to longevity, but that is changing.
I lost my sister to multiple myeloma in 1995 after roughly a 2 year battle. I was diagnosed in 2009 and I'm moving into my 6th year and my present condition doesn't predict any end soon.
You could well see a long and fruitful life with the disease kept in check, or even cured.
Keep your chin up.
I lost my sister to multiple myeloma in 1995 after roughly a 2 year battle. I was diagnosed in 2009 and I'm moving into my 6th year and my present condition doesn't predict any end soon.
You could well see a long and fruitful life with the disease kept in check, or even cured.
Keep your chin up.
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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: The Grim Reaper
Flip the question:
Who are you going to call on your 60th B-day....and scream at, cause they were wrong about your life expectancy ?
Think about it...
Good luck.
Who are you going to call on your 60th B-day....and scream at, cause they were wrong about your life expectancy ?
Think about it...
Good luck.
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Rneb
Re: The Grim Reaper
I opened this thread, read it and thought, hey I don't remember writing that, but it sounds so much like me!
I am 36 and have been living with multiple myeloma for 4.5 years I am also going through a very slow relapse / reoccurrence! Low M-spike, but it is back after being in CR for 4 years since my stem cell transplant. I have not started treatment again.
I don't know what I'm feeling. Kind of relieved it is back in a way. The three month blood work and constantly waiting for multiple myeloma to come back was very difficult for me. Just constantly waiting for it to come back.
In terms of my life, I was able to get healthy again, get back in shape, loose weight (eating healthy going to the gym), and doing stuff same as my friends again. Finally after three years of trying to kickstart my career, I've been able to get a job back in HR, but still not management level like I was working when I got sick and lost my job.
If I have to take a leave again and do more treatment and another stem cell transplant, I just don't see myself being able to go through all this again.
So yeah it sucks to think about what might happen.
I am 36 and have been living with multiple myeloma for 4.5 years I am also going through a very slow relapse / reoccurrence! Low M-spike, but it is back after being in CR for 4 years since my stem cell transplant. I have not started treatment again.
I don't know what I'm feeling. Kind of relieved it is back in a way. The three month blood work and constantly waiting for multiple myeloma to come back was very difficult for me. Just constantly waiting for it to come back.
In terms of my life, I was able to get healthy again, get back in shape, loose weight (eating healthy going to the gym), and doing stuff same as my friends again. Finally after three years of trying to kickstart my career, I've been able to get a job back in HR, but still not management level like I was working when I got sick and lost my job.
If I have to take a leave again and do more treatment and another stem cell transplant, I just don't see myself being able to go through all this again.
So yeah it sucks to think about what might happen.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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