Living with Myeloma

I started this blog as a means to an end….a way of surviving my diagnosis of Multiple Myeloma that has turned our life upside down, but now, 8 years down the line, has allowed us just to see it as a different way of living.

I was diagnosed with Smouldering Myeloma in 2009 and finally started treatment in 2010, with my first Stem Cell Transplant in 2011. As of May 2017, I am in a Very Good Partial Remission – in my mind that should just be Remission. I am doing well and now feel like I am at 99%….the life that I never thought I would get back, I am living to the full having tried new roles and new things. In addition, over this period, with family and friends, I have been able to raise over £115,000 for Myeloma UK. 

I hope that my blog will allow others to see that while the journey you take with myeloma isn’t always easy, that there is always hope that things can be good.

 

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2 Responses to Living with Myeloma

  1. Hi deb, I read your article in the myeloma uk magazine and realised afterwards that you are in wycombe, i am in langley, have tried to send you a message on Facebook but I don’t have the option to? Have sent you a friend request instead.

    I have myeloma too and will be having my first stem cell transplant fairly soon. Would love to talk to you?

    Sue Murphy

    Like

  2. Dana Hansen says:

    Greetings,
    My name is Dr. Dana Hansen and I am faculty at Kent State University, College of Nursing. You may view my faculty website page at http://www.kent.edu/nursing/facstaff/bio/~dhansen1/.
    We are contacting you because you are listed as the contact person of this blog. My research team and I are interested in learning about the family caregiver’s experience with reading their loved one’s illness blog.
    I was inspired for this research during my sister-in-laws journey through breast cancer. She created a blog and after interacting on that blog I began to wonder what the experience of reading the blog was like for my brother-her caregiver. After consideration, we are conducting a research study and are inviting you to participate. Below are details of the study. You can also find out more by going to our study website: https://nursing.kent.edu/caretaker.
    If you are not the family caregiver of the person with a serious illness, please forward this information to someone who is.
    Family caregivers are eligible to participate in the study if:
    • Both you and your loved one are 18 years or older
    • The family caregiver must participate in the blog by responding to the blog or reading the blog
    Procedure and Time Commitment:
    The family caregiver should go to our website where they can click on an icon labeled “participate in study” and will be asked to leave their contact information. I will then contact them to review the procedures of the study and determine if they are interested. If they are not, they can decline to participate. If the family caregiver agrees to participate, they will complete a consent form and we will determine a time to conduct a 1-2 hour interview where we will ask questions about their experience as a caregiver interacting with their loved one on an illness blog. A nominal onetime payment of $50.00 will be sent to the participant once the interview is complete.
    Participation is voluntary and participants may withdraw from the study at any time without penalty or loss of benefits to which they are otherwise entitled.
    Thank you for your time and consideration,

    Dr. Dana Hansen
    Dana Hansen RN, PhD
    Assistant Professor
    Kent State University, College of Nursing
    113 Henderson Hall, P. O. Box 5190, Kent, OH 44242

    Like

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