My name is Carol. I am new here. I'm 65 and have 5 grandchildren ranging from 1 to 18. Four months ago I was diagnosed with having smoldering myeloma (moderate).
My doctor for the past few years said I probably had cyclic neutropenia. He left the practice and then my new doctor referred me straight away to a hematologist. Very grateful for that. Had all the tests and no damage found. Being monitored closely. Having monthly blood tests.
Up and down days, but I believe there is a rainbow as it has been picked up early.
Feeling really tired and get forgetful and foggy in brain. Still getting on with my usual activities. Seeing a myeloma specialist now.
Nice to be here and I do feel the support from reading your posts. Best wishes on your journeys.
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4 posts
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cazzamac - Name: cazzamac
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2016.
Re: Carol, 65 years old, with smoldering myeloma
Hi Carol,
I'm smoldering too. It's quite a complicated illness, and it's very important for you to educate yourself as much as possible about it. 'Doctors differ and patients die'. I've been to a few doctors (for bloods) in the last year and am amazed by their incompetence. I only hope my consultant is as good as I think she is.
This is a disease where you have to be educated, and feel confident in yourself when dealing with your carers. Don't hesitate to ask questions, or occasionally demand answers if you feel you're not getting all the information available.
Hope you keep smoldering for a long time.
Regards
I'm smoldering too. It's quite a complicated illness, and it's very important for you to educate yourself as much as possible about it. 'Doctors differ and patients die'. I've been to a few doctors (for bloods) in the last year and am amazed by their incompetence. I only hope my consultant is as good as I think she is.
This is a disease where you have to be educated, and feel confident in yourself when dealing with your carers. Don't hesitate to ask questions, or occasionally demand answers if you feel you're not getting all the information available.
Hope you keep smoldering for a long time.
Regards
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Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
Re: Carol, 65 years old, with smoldering myeloma
Thank you for your reply. I'm still having monthly checkups, and all is OK. I'm very keen to get a lot of information, It helps to be prepared. Hope all is going OK for you as well.
Cheers,
Carol.
Cheers,
Carol.
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cazzamac - Name: cazzamac
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2016.
Re: Carol, 65 years old, with smoldering myeloma
Hi Carol,
I have some results back from my recent bloods. A few have been travelling the wrong way. But the next time they could go the other way. Still waiting for some of the more crucial results. My haematologist, in a letter, said she 'might' want to see me after she receives them! I don't lose any sleep about any of this. My wife does though
With my friends (and everyone else), I've been very nonplussed about the 'condition'. And will joke about 'Not being there in a few years'. But the reaction I'm getting now (from some) is 'Ah, you're just looking for sympathy!'
It's like, unless you can say 'I have a tumour this big, in a given organ' it's not really cancer!
I'll take whatever this disease throws at me, will go through any (well most) procedures without sedation. But what gets me (someone who feels everyone else's pain) is the lack of empathy!
Hope you are surrounded by people who cherish you, and stay smoldering
I have some results back from my recent bloods. A few have been travelling the wrong way. But the next time they could go the other way. Still waiting for some of the more crucial results. My haematologist, in a letter, said she 'might' want to see me after she receives them! I don't lose any sleep about any of this. My wife does though
With my friends (and everyone else), I've been very nonplussed about the 'condition'. And will joke about 'Not being there in a few years'. But the reaction I'm getting now (from some) is 'Ah, you're just looking for sympathy!'
It's like, unless you can say 'I have a tumour this big, in a given organ' it's not really cancer!
I'll take whatever this disease throws at me, will go through any (well most) procedures without sedation. But what gets me (someone who feels everyone else's pain) is the lack of empathy!
Hope you are surrounded by people who cherish you, and stay smoldering
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Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
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