Dear Rebecca
I am pretty sure that there is nothing on this educational tool for nurses that you do not already know and that is EXACTLY why I do not understand why this information could not be made available for us all should we want it. Obviously it would need to be in a slightly different format & without the continuous assessments that are included for healthcare professionals. This educational tool will be updated regularly therefore it is an excellent up-to-date resource. The information in the tool is all collected together in one place and can be gone through methodically at an individual’s own pace of learning. It has sections as follows:
Epidemiology
Pathogenesis
Diagnosis & Staging
Treatment & Management of Side Effects & Complications of Myeloma
Transplantation
Drug Development & New Treatments
Anaemia
Bone Disease
Maximizing Quality of Life
I have the FACTS of my Myeloma already as I am sure you do Rebecca. BUT I do not have the deeper UNDERSTANDING that I feel I need and have been grappling with for ages & trudging through the internet for. There IS no horror show on this educational tool. But rather there are excellent materials including animations and podcasts (the podcasts are from the Myeloma UK TV so you will have already seen them) to aid learning & give a deeper understanding of Myeloma. I feel a deeper understanding of Myeloma can help sufferers make more informed decisions about their future, if that is what they want.
I have found out fairly recently that my Myeloma consultant needs to be asked specific questions. If he is not asked, he will not tell me. We may be going our separate ways because of this but one thing I have learned from that experience is that if I was not on the internet researching prognosis I would not have had the knowledge to ask him about my genetics and my flc ratio. Because of this I got another opinion which came with the recommendation that my bloods need to be monitored monthly, my mri’s and bmb’s need to be done 6monthly. I feel I am on top of my condition because of my trudge through the internet. Do I regret it? No… but I do regret the laboriousness of it 🙁
Often, we do not know what we need to know until we know it. That is why for me if I know as much as there is to know, then I have more chance of knowing what I need to know 🙂 & staying on top of my Myeloma.
Rebecca, from my consultation re my genetics I was given the reassurance that there are drugs that are fairly far along in terms of being approved for our High Risk group & there is lots going on researchwise. In terms of how this learning tool situation can be changed, I suppose this is a starting point. I am hopeless on computers but I am pretty sure there will be someone with the technological knowledge to make it possible. I suppose, though, we have higher powers here at the decision-making level that would need to approve it and would look forward to their views on it on this forum or failing that maybe Ellen can give advice on how to pursue this? My best wishes to you Rebecca. Take care for now.
Kay 🙂
