[susieParticipant]

I often come on this site and have found it a great comfort during my myeloma journey. I have noticed for some time there are very little new posts. So where has everyone gone ? If it’s the facebook support group I don’t have an account.

Best wishes to all

susie

[davidainsdaleParticipant]

Hi Susie

Hope you are well. I couldn’t agree more.

It is a pity that the number of users appears to have dropped off.

The main advantages for me with this Form is that it has a good search engine which means that earlier posts retain their value and that the content is overseen by staff from Myeloma UK.

Hope this helps.
David

[tmcintyreParticipant]

Hi Susie,

The Facebook group is very active although I came off it a couple of months ago as I was becoming emotionally involved with so many people’s journeys and found it too distressing when they passed away. Of course there are lots of lovely people managing very well too and the “real time” feel of it was very reassuring if you had questions. Now that my husband has had his SCT and been told to get back to normality I felt that I needed to stop letting Myeloma dominate our lives even though he is still on the 4 weekly cycle of maintenance treatment and check ups.

So, I visit this forum now and then, and also the Macmillan Myeloma forum,

Teresa

[susieParticipant]

Hi David

How nice to hear from you and thanks for replying.

It’s such a shame the forum is not being used as it once was. I know I learnt so much about everything to do with MM when I was first diagnosed in 2014. I’ve just finished treatment at my 1st relapse. Unfortunately the VMP hasn’t held my parapeoteins down and they’re rising already. So I don’t think it will be long before I start treatment again.

I hope you’re keeping well. Let us know how you are getting on.

Very Best Wishes

susie

[susieParticipant]

Hi Teresa

Thanks for replying.

I think you’re very wise to try and forget the myeloma. I wish I could. Living on my own doesn’t help I suppose. I also use Macmillan forum,it seems to be expanding.

I hope your hubby remains well.

susie

[docmikeParticipant]

Hi Susie
You are right to say that the forum is less well used these days .And hopefully this is due to more people being in remission, when you try to put myeloma on the back burner . However given that treatment in the uk (outside trials) is 5 years behind the us and probably most of europe ,unfortunately earlier relapse is more likely and the treatment options then are limited by NIce and Nhs england and thats why this forum becomes important again . If myeloma uk wants to make myeloma history it has to stop the rationing and distortion of clinical trial evidence by nice and nhs england so we get access to the drugs ( triple or quadruple therapy combinations) which give us longer remissions with LESS SIDE EFFECTS; thus myeloma becomes a chronic disease a step forward towards a cure .
Despite being a retired doctor i know a lot about patients forums and their unique value (how? that a different story). This is the best forum but sometimes you need to be contraversial to encourage debate when the truth, however unpleasant becomes evident ,and then you can move forward.
Michael

[davidainsdaleParticipant]

Hello Michael ( and all)

Hope you are well. I totally agree with your comments.

I worked in the Civil Service for many years and have first hand experience of the importance of Policy work. It may seem dry and boring to most but the power of the pen should not be underestimnated. In giving feedback to Myeloma UK I have always tried to stress the importance of this aspect of their work.

Don’t forget Jim Hacker and Yes Minister!

Hope this helps
David

[rebeccaRParticipant]

Hi Susie, I wonder the same as I do check regularly to keep updated re. people from old. I am not on Facebook as feel bombarded with such social media so find it a shame that there are few posts. I do not like the new website layout (seems new/different on my phone now?) but continue in case people give updates. I fear this forum will eventually be unused/redundant which is a shame. Not sure what the solution is but when new people come on and see such few posts they will automatically assign to Facebook.

[davidainsdaleParticipant]

Hello Rebecca

Perhaps Myeloma UK should be pushing the patient engagement aspects of their work harder eg the `official’ forum and the local support groups.

Glad to see that I am not the only one who is having difficulty with the new website layout. Perhaps a case of ` emperor’s new clothes’?

Hope this helps

David

[patsyannParticipant]

Glad to see some familiar names, Michael, David and Rebecca. I hope you’re all well at the moment. I’ve never really posted much – it’s my husband who has Myeloma – but have found posts and encouragement from many people such a support over the past 5 years through SCT and several treatments since then. I do wonder how Andy, Helen and Jan are doing. I’m not on Facebook either and reluctant to sign up for it. I don’t really like the new site either and am struggling to find my way around it. All the best to all of you, new folk as well as more familiar names, as we all battle on as best we can.

Pat

[susieParticipant]

I too, do not like the new site. I find it drawn out to navigate to the page I may want. I have no intention of signing to Facebook so I’m sure we miss out a lot. I know Andy went there. Each to their own of course.

I don’t know if it’s me, but I somehow feel this whole thing appears to have ” quietened down ” since Eric left. The info nurses are of course brilliant as always. I depended a lot on this forum, coz my haematology unit gives little or no emotional support.

Best wishes to all

susie

[rebeccaRParticipant]

I didn’t like to mention my dislike of the new changes but now I know it’s not just me! Funny how little things can change ones perspective/interest in a site.

[peterlParticipant]

Hi All,

Yes, I do sympathise with some of the posts above, but the new Myeloma site could be a lot worse! When MicroSoft (MS) introduced an all ’tile’ presentation in Windows 8, there was a great deal of adverse comment from loyal MS users. MS tried to capitalise on the tile apps presentation used in mobile phones and tablets. But in my view, finger tapping on a mobile app icon to access a specially structured app for mobiles (say Whats App), is a completely different situation than introducing tiles in a software update – to a once classical point and select web page. The latter if now tile based can be difficult to navigate, unnecessary and the old adage “if it works, don’t alter it!” applies in my view. Myeloma UK have now gradually introduced more point and select options, rather than hiding in a cluster of tiles as they originally did at the software update stage. Probably because they had such a poor response from users, who frankly have other things on their mind, rather than trying to struggle through to get to the forum section say. I also wonder whether the latest web page change was contracted out? Or done in-house? And either way: what was the driver for this and of course the £££?

Peter

[davidainsdaleParticipant]

Hi Peter and All

You make a number of very valid points. If the average age of myeloma patients at diagnosos is around 70, then I suspect that most patients will not be users of latest technology including mobile phone apps, tablets and social media applications. But then the website may be aimed at other groups such as younger health care professionals.

Speaking personally, I can manage with the new website on my laptop using point and click but it is certainly less easy to navigate than the old one.

Hope this helps

David

[janwParticipant]

It’s taken me sometime to navigate around this new site. Also I relapsed in April 2018 after my second SCT in September 2016. Currently on Ixazomib, Revlimid and Dex cycle 3 which has thankfully reduced my light chains from 3000 to 400 but the side effects of fatigue, constipation, sleepless nights with steroids and then crash days with the steroid withdrawal have been taking a little while to get used to so I haven’t been using this site as often over the past four months.
Jan

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