[blessthischickParticipant]

Hi Everyone

I am aware that we are all different both with our Myeloma experiences and our need for knowledge. I have spent the last 8 months at different stages of my learning curve trying to grapple with the internet, most recently, in the process of exploring and trying to UNDERSTAND genetic abnormalities of which I have a few.

I was HEARTENED to see that Myeloma UK has released a new educational tool for healthcare professionals which is free and can be accredited. As a nurse of 27 years (perhaps soon to be retiring due to Myeloma) I accessed this course and was immediately DISHEARTENED by what I saw. Don’t get me wrong, the course looks very comprehensive and has invaluable information on Myeloma for healthcare professionals. I am just so gutted that this invaluable information has not been made available to me, one of the patients grappling with finding information for my Myeloma. That says to me that a healthcare professional’s need for knowledge in Myeloma is superior/more important than mine, the Myeloma sufferer (albeit smouldering).

I am well aware that an organisation like Myeloma UK needs to cater for a diverse population in terms of information needs. The need for information is not always related to someone’s level of intelligence. Some people who would be considered highly intelligent do not want to know anything about their disease and conversely someone who would be considered less intelligent (perhaps like me) wants to know everything there is to know about their disease.

I think the keyword here is CHOICE. There are ways of asking people about how much they want to know and as adults surely we are capable of making that CHOICE? Having Myeloma does not take away our ability to make a CHOICE. Surely that CHOICE should be given to us especially that by virtue of the fact our CHOICE for many other things people take for granted have been taken away due to this disease.

“If you study to remember, you will forget: if you study to UNDERSTAND, you will never forget.” It is EXTREMELY important for me to know my enemy, my Myeloma. I have been given the FACTS i.e. I have HIGH RISK genetics which means I have a poor outlook regarding prognosis once my disease becomes active, but I have been desperately trying to UNDERSTAND it and therefore have spent many hours trying in vain to find info that has already been available (but not to patients) at Myeloma UK. Why should we have to grapple with the internet like I have done in the last 8 months eating into my precious smouldering time when this info could have been given to me freely at the touch of a CHOICE button?

Yours (feeling extremely let down)

Kay 🙁

[rebeccaRParticipant]

Would say thanks Kay but a bit disheartened that what I want is out of reach. I have spent far too long trying to research – and inevitably researching a lot of negative stuff in the process. Yes I would like access to this information though would probably read some it through closed eyes like watching a horror film! Annoys me as much as when my consultant just says he’s “happy” and trying to end the consult without giving any details at all (not an unfamiliar story). I so want this info now and yet am aware that, like my lovely consultant, depending on where you are in your journey some information could have a negative impact. I have poor cytogenics and this was withheld from me until I found out accidentally – it was only then that I was very grateful not have known for the previous few months when I could have spiralled further down – but was in a better place when I found out and was then glad to know. I guess my researching skills aren’t that clever because I know others have managed to find so much more depth than me but I would love the opportunity to access such info easily and be allowed to judge for myself when I am ready to “look”. How do you think we can change this?
Can what you/or others have accessed be shared or is this contravening professional codes.

Rebecca

[blessthischickParticipant]

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 🙂

 

 

[mhnevillParticipant]

Hi Kay

I’m with you. The more knowledge the better! It sounds like someone should edit the
“professional’s material” in a form that is suitable for the lay person who wants to be as clued up as possible. It strikes me some new sort of flow chart is needed.

Like every other resource, only those who want to need access it.

Hope things go well with you on the next part of your MM journey.

Love.

Mavis x

[tallulah55Participant]

Hi

I wonder if you have accessed the US based Myeloma Beacon website, I like the depth of information on trials and research, the weekly polls conducted through the forum and the general layout which I think is easy to navigate. However as it is US based,  standard treatment regimes are not the same as in the UK and different terminology and units of measurement are referred to.

regards

Nicki

[Author]

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