[Beacon Staff]

Weekly Poll - Hardest Thing About Myeloma

by Beacon Staff on Wed Sep 05, 2012 11:32 am

This week’s poll asks what is the hardest thing about living with multiple myeloma?

A few clarifications:

First, this poll is for anyone who has been diagnosed with symptomatic multiple myeloma or who has been treated for smoldering myeloma.

Second, if you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf.

As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers.

Especially, if you have selected "Other," please let us know what has been the hardest part of myeloma for you and why.

[barbsarb1]

Re: Weekly Poll - Hardest Thing About Myeloma

by barbsarb1 on Wed Sep 05, 2012 3:15 pm

The hardest thing for me while I am in remission is waiting for the "other shoe to drop." Knowing that at some point the M-spike will go back up and treatment will begin again. My life expectancy is shortened, but I am hoping for many more years yet.

[terryl1]

Re: Weekly Poll - Hardest Thing About Myeloma

by terryl1 on Wed Sep 05, 2012 4:35 pm

Having been diagnosed still in my forties, nothing even comes close to the fear of leaving behind my two young kids and wife. This aspect of myeloma really can affect you psychologically if you let it. Most times it doesn't, but when it does, it royally stinks. Terry L

[Nipon Ginko]

Re: Weekly Poll - Hardest Thing About Myeloma

by Nipon Ginko on Wed Sep 05, 2012 9:08 pm

HI I posted OTHER on this questionare not that many of the items don't pertain to me but being 74 years of age a lot of them are not as revelent to me as to younger victoms. So other than the obvious ,I think the other disease's that have came along to accompany the Myeloma are really distressing -namely the fact that I can hardly walk more than a few feet any more due to disforming of my feet to where I can just barely stand - my oncologists description-( large lasting bullous changes of the skin of his hands and bottoms of his feet , along with sensory neuropathy in his feet, caused by treatment with Thalidomide & Dex.) I also have severe back problems due to a decrease in height of 4" due to compression of my spine. I have also had Prostrate Cancer. N.G.

[lys2012]

Re: Weekly Poll - Hardest Thing About Myeloma

by lys2012 on Thu Sep 06, 2012 2:28 pm

I put other because my biggest thing is Myeloma has ruined my career.

I spend my 20's going to nightschool while working full time as a legal secretary to earn my Bahcelor of Arts (honours) degree in Human Resources and Labour Relations. I finally graduated in 2009 and less then 6 month later I wqas diagnosed with multiple myeloma. I had gotten a really good promotion into a management job in my field a few months after graduating but I was terminated while I was on sick leave recovery from my stem cell.

I had to come back to work to my old secretary job which I am really unhappy about, and because my degree is now three years old, and I barely worked in my feild I can not seem to get another opportunity. I am not able to look outside my current employer since I need the sick benefits / disability / pension lined up since I now will be living with multiple myeloma the rest of my life.

I am turning 35 next month.

[m219]

Re: Weekly Poll - Hardest Thing About Myeloma

by m219 on Fri Oct 12, 2012 9:42 pm

Myeloma...has cost me a relationship. It has put a uncertainty in my life that is unknown to others, scares me. It has taken away my prior life. And, people around me, has put this stigma onto me.