[meliaganteParticipant]

I’ve had MGUS for over 20 years…but last August’s blood tests triggered a bone marrow biopsy which confirmed that it had progressed to Myeloma. My haematologist ordered an “urgent” MRI before my appointment but there was a mix up with the hospital and I’ve ended up having to wait until a month after my diagnosis to get one. Now I’m still waiting….this time for the results to get to the haematologist and the MDT meeting. It’s like being in a slow motion car crash. I can’t plan for anything until I know whether I have symptomatic or asymptomatic myeloma….and it’s the waiting that I’m really struggling with.
I know that myeloma is treatable but not curable and I’m fortunate enough not to be panicking about it (after all I’ve had 20 years of dancing with this possibility and three bone marrow biopsies so I know the drill) I’m just not a patient woman and it’s the not knowing that is just getting to me at the moment so I’m feeling a little frustrated and sorry for myself….

[gcParticipant]

Hi. Sorry you are having to wait for your results. The not knowing and uncertainty are hard to deal with. As you say you’ve lived with the possibility for some time but I’m guessing right now that is little consolation
You are allowed to feel sorry for yourself so dont be hard on yourself. This forum is a good place to come when you feel overwhelmed or finding things hard. There are positive posts too!
I hope you get answers quickly – so much easier when you know what you are dealing with.
In the meantime, just be good to yourself.

[meliaganteParticipant]

Thank you….I’ll try 😊

[mulberryParticipant]

Hi meliagante, I think the waiting bit is the hardest, for us all. Once you know whether you will benefit from immediate treatment it will be easier- either you wont, because you are smoldering, and you are sort of let off the hook- or you will be swept up by the Haematology team and intensive treatment will be started, a process that sort of takes over life, but where you will be well supported by the nurses and the team (In my experience anyway).
When I was at this uncertain stage I was totally preoccupied by myeloma all the time from waking until last thing at night. But this doesn’t last, eventually I acclimatised to living with myeloma, and I’ve had a good quality of life over the past almost 5 years since recovering from a stem cell transplant.
I hope you get your results, and that this waiting torture is over soon.

[meliaganteParticipant]

Thank you…I’m certainly at the preoccupied stage at the moment 😊

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