The Myeloma Beacon

Independent, up-to-date news and information for the multiple myeloma community.
Home page Deutsche Artikel Artículos Españoles

Forums

Please introduce yourself to other readers. We would like to hear your story.

Re: Coming out ... sort of

by Hopeful1 on Wed Feb 08, 2017 10:23 am

Thank you for your support! Still waiting on the call Friday with the multiple myeloma specialist.
Everyday is a new beginning. Cazzamac, hang in there. I lost my mum. Visit yours as much as possible. I know how difficult it is. God bless you both.

Hopeful1
Name: Hopeful1
Who do you know with myeloma?: Self
When were you/they diagnosed?: March 2016
Age at diagnosis: 56

Re: Coming out ... sort of

by DMR on Wed Feb 22, 2017 2:58 pm

Hi there,

Today is the first day that I have made any kind of posts. My husband and I have been introduced to multiple myeloma just this past January right around his 50th birthday. Our story is similar to the fact that we have only told close family and good friends. My husband didn't want all the sympathy, meals, etc. My kids are 20, 19, and 17. My two oldest boys are away at school and my daughter is a senior and will be going away to college in the fall. With that said, we don't need help with all the kid stuff.

Thank you for sharing your story. My husband isn't into all the research stuff as much as I am so I will be here quite a bit following stories and taking in all the info that I can.

Stay positive!

DMR
Name: DMR
Who do you know with myeloma?: Husband
When were you/they diagnosed?: January 2017
Age at diagnosis: 50

Re: Coming out ... sort of

by Elaine2033 on Thu Jun 22, 2017 8:24 am

Hi hopeful 1,

You have to go with what you are comfortable with in telling people when you are ready. I too found it difficult at first when I was diagnosed with smoldering multiple myeloma last year. I only told family and a couple of close friends. Eventually I told my co-manager as I was having time off for appointments, etc. This worked quite well until I progressed to active myeloma this year, which was a shock as I was considered low risk. Because of the nature of my work, my consultant advised me to cut back on my community visits. when I started my induction treatment this month. This made it impossible in keeping it quiet as the rest of the team needed to know why I was out of action so to speak. I decided to just come out and say that I have cancer. It seemed the easier solution. All I can say is people have been very supportive. I did have a couple of moments when I saw people I haven't seen for awhile who greeted me with 'wow you look well Elaine'. I did find I couldn't tell them I was actually not well even though I appear to be!

I too am being referred for a stem cell transplant and I'm too feeling very anxious but I have read Mark's journey and others and take their experiences and tips, etc, as very positive and en­cour­ag­ing. I live in England. I know who I'm being referred to, and I know people who have been treated at the hospital and with same consultant, so in some ways that makes it a bit easier for me.

I wish you all the best in your journey. I hope it's a smooth one.

Take care Elaine xx

Elaine2033
Name: Elaine
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Smoulder myeloma may 2016 myeloma may 17
Age at diagnosis: 57

Re: Coming out ... sort of

by Hopeful1 on Thu Jun 22, 2017 1:59 pm

Hi Elaine,

Thank you for the kind words. Should all the pre-tests clear me, I will have the transplant. I've never been more frightened in my life; not just about the procedure, but life during and after, finances, job security, and overall quality of life.

I am single so I will rely on a couple of dear friends to aid me through recovery. In the fall, my middle son will move home to assist. Needing help that requires others to turn their lives upside down has been very difficult for me, actually set in some guilt. I am told this is the best option to "prolong life". I am high risk for relapse, my understanding id yhsy the transplant should give more time without the disease progressing.

I did not get any personal referrals to my doctor at the cancer center, and, frankly, was not fond of his "bedside" manner, but nonetheless, forward I will go. I, like others, will have to move an hour and a half from my family and friends for the transplant, and that makes me very anxious, as they are my support.

I still have not shared my disease, but will as soon as I have total confirmation and a date for transplant. I do believe keeping this secret while one looks well made it easier for me. To each their own.

England? Aww, I was born (military brat) in London. My Mum passed at 87 in October, life long resident of the States, but never gave up her British citizenship or lost her beautiful accent.

Blessings to you. Thank you for your response. This site has been an amazing outlet of knowledge and friendship for me.

Hopeful1
Name: Hopeful1
Who do you know with myeloma?: Self
When were you/they diagnosed?: March 2016
Age at diagnosis: 56

Re: Coming out ... sort of

by Hopeful1 on Sun Aug 06, 2017 7:31 pm

Hello all.

I have broken my silence and am moving towards my auto transplant. Stomach shots began Friday. Tomorrow I will go and hopefully be able to begin my harvest. Actual transplant ... chemo is set for the 15th. I will be a inpatient for two to three weeks, and in a nearby motel for four to six weeks. Doctor has suggested a tandem transplant, I have requested a meeting to further discuss why he feels this is best. I am high risk, but the 2 blasts of chemo concerns me greatly.

Thank all of you for sharing your experiences, I am very positive this transplant will be successful! Blessings to all.

Hopeful1
Name: Hopeful1
Who do you know with myeloma?: Self
When were you/they diagnosed?: March 2016
Age at diagnosis: 56

Previous

Return to Member Introductions / Personal Stories