Re: I got MDS for Christmas......
Posted: 31 Dec 2014 20:05
Hi to all but particularly to Kirsty and Ian
Sorry to hear of your recent diagnoses and distress. Most of us will have had the same experience of long, desperate waiting for bone marrow biopsy results and then not being quite sure if we have been told the full story.
I was just as panicked at the beginning and, to a large extent, because the course of MDS can be very variable, one never really knows if (and when!) to start worrying! All I can say is:
1. It is NORMAL for bone marrow biopsies to take several weeks to fully process as these days there are a lot of different chromosome and genetic mutation tests performed which are essential to coming to a correct diagnosis and prognosis for your particular type of MDS. Without this full information it is simply not possible to give us as patients the sort of information we need.No amount of ringing up either haematologists or GPs will bring forth this information if it just isn't all ready yet.
2. Sometimes there are clear cut indications right from diagnosis of how serious or mild the MDS might turn out to be but at other times it really is a case of monitoring blood counts over time to see how the disease is behaving. It's not that medical staff are being cagey, it's just that the medical understanding about the development of MDS, although vastly improved over the past 5 years, is still really developing.
3.Health professionals do need more training on how to break bad news to patients... they could at least suggest you talk to a clinical nurse specialist or give patients information about this MDS support group. Were you told about us or did you have to look for yourselves?
4. The anxiety will lessen with time and as you gain more information about what MDS means for you but do speak to specially trained counsellors if you are still worrying a few months down the line.
We all wish you the best and hope that you soon feel better "in your heads" about your diagnosis. Take care and speak to Sophie, post on this Forum and talk to your loved ones. It all helps.
Best wishes
Chris
Sorry to hear of your recent diagnoses and distress. Most of us will have had the same experience of long, desperate waiting for bone marrow biopsy results and then not being quite sure if we have been told the full story.
I was just as panicked at the beginning and, to a large extent, because the course of MDS can be very variable, one never really knows if (and when!) to start worrying! All I can say is:
1. It is NORMAL for bone marrow biopsies to take several weeks to fully process as these days there are a lot of different chromosome and genetic mutation tests performed which are essential to coming to a correct diagnosis and prognosis for your particular type of MDS. Without this full information it is simply not possible to give us as patients the sort of information we need.No amount of ringing up either haematologists or GPs will bring forth this information if it just isn't all ready yet.
2. Sometimes there are clear cut indications right from diagnosis of how serious or mild the MDS might turn out to be but at other times it really is a case of monitoring blood counts over time to see how the disease is behaving. It's not that medical staff are being cagey, it's just that the medical understanding about the development of MDS, although vastly improved over the past 5 years, is still really developing.
3.Health professionals do need more training on how to break bad news to patients... they could at least suggest you talk to a clinical nurse specialist or give patients information about this MDS support group. Were you told about us or did you have to look for yourselves?
4. The anxiety will lessen with time and as you gain more information about what MDS means for you but do speak to specially trained counsellors if you are still worrying a few months down the line.
We all wish you the best and hope that you soon feel better "in your heads" about your diagnosis. Take care and speak to Sophie, post on this Forum and talk to your loved ones. It all helps.
Best wishes
Chris