[DaiCroParticipant]

It it just me or has the board become inordinately quiet recently?:-S

I know we all take small breaks and holidays for myriad reasons and there has always been a fine mix of regular, semi-regular and intermittent contributors… daily chatters, shakers and movers, information givers, responders to such information and those that lurk, reading often and responding now and again.8-)

I suppose that the forum will continue to inform and support new members and old as per usual… but I miss the regulars (Min and Sarah etcetera understandable.. but they were rocks around here)… and other stalwarts, myself included, are irrevocably moving into later stage and all that that brings,:-|

I just feel that the loss of that 'family feel' on the board makes it a more functional, matter of fact, info exchange forum and that is a pity.:-(

But I understand that, I really do… when you consider how many mm'ers there are out there and how few take advantage of Myeloma UK and the forum in particular… well., for me it goes to prove how many frightened, inward looking, insular sufferers there must be out there. 🙁

The majority of those that do find us use us for purpose and then disappear… nothing at all wrong with that but a lot of the answers they seek can, apart from occasional lurkers, only come from the experiences and memories of long term contributors… and those, the 'family, are disappearing or retreating at an alarming rate.:-/

Just thinking aloud.:-)

Dai.

[brochoParticipant]

Hi Dai funnily enough I have been thinking the same thing lately I really miss the chatty lighthearted moments on here This board is brilliant for finding out facts re mm and even more so for support but its so nice to be amongst like minded people and relax too. I probably have been a bit quiet lately si I will get back to normal I think love Bridget x

[DaiCroParticipant]

Bridget,

You have been an absolute rock to so many of us for so long and yet you always manage to make us smile and feel relaxed… you do more than your part to make such an intrinsically morbid place to be into a delight at times.:-)

God bless you, I love you.8-)

Dai.

[DebsParticipant]

Hi Dai,
I don't tend to post regularly anymore because I find it all a bit tough at times.
Post transplant, I have been pretty much constantly ill with coughs, colds and illnesses. That alongside trying to run my family in some sort of normality,and organise my ball just takes it out of me, so I suppose that is perhaps the same for others.
I do look on occasionally, but the problem for me is that it doesn't always help me and sometimes drags me down when I am struggling to keep going anyway. I know you guys are amazing in the support you offer, but I think that people need to be in the right place to ask for help, and sometimes when in remission, just need to try to stay positive by forgetting as much as possible about the MM.
I am seriously considering taking a massive step back after my ball in November, and trying to almost pretend I don't have this bl*ody awful cancer – I have tried to support the charity and a number of individuals over the past 3 years, and hope I have done that, but also feel that I owe it to myself and my family to try to be as happy as I can be for as long as I can be…and that doesn't seem to be happening when I spend too long on here….does that make sense?
I know it's a hard one as this is one of the first places I come when I need support – maybe I'm being very selfish. But my five and seven year old don't understand when they see me sad or in tears because I've read something else that makes me realise the fragility of our situation.
If it helps, I don't think the family feel has gone….I think you just have different people contributing now to those who contributed 2 years ago.
You guys are all great…..I will try to be more involved for the next few months if I can….
Debs x

[eveParticipant]

Hi Dai

I think you have said what a lot of people feel,you see so many people coming on here for advise help or just to explain how they feel,some never to be heard from again,and some just can not cope with the whole process,and as we have both said some who cope for years and then just post. I would not pretend to know why they post and we never hear from them again.May be as Deb says,she has a young family and needs to turn away to cope with her family.

At the moment I have to look to the future,Slim is in a better place than he has been for more than a year,but I do recognise I have only got through this with the help of my cyber friends people that I will never meet.I often think about people who have stopped posting,without giving a reason,I just hope its because they are well.

I am no longer up in the early hours and this was my time for posting,because of this I do miss some posting,when I see a post,that is new I try to reply plus if I think I can help with something I reply,but at the moment,I have few problems,Slim is as well as he can be in the circumstances,and we wait for 23 of April.

Glad to see you are sleeping a bit better,your body will get use to the dose,but its like most things at least your sleeping love Eve

[MinParticipant]

I think debs hit the nail on the head with regards to popping in when your i'll and need the support, but its a different kind of support that people in remission need in order to move forward.
But I look in regularly can't help myself, just need to know your all OK.
Cant just shrug of my cyber friends and confidantes
Similarly saddened to see new members, knowing the utter torment of a diagnosis.
The widows group I belong to as lots of people in the same boat, trying to help one another from afar when you can't find the answers or your just needing some e contact.
Who would have imagined the internet twenty some years ago.
Shame the medications dont progress as fast as technology!

[susannahParticipant]

Hi Debs I was really moved by your post and although I dont reply on here very often I do look in now and again. Michael my husband has never been on this sight, he to was very young when diagnosed and our girls not much older. Im the one who has gone to discussions groups etc, he has just taken his treatment,and tried to live as normal alife as he can, he doesnt even tell me when he has pain, but i know and im always there to support him, he does and he has over the years support MUK

I think everyone copes differently, I find it really hard sometimes and im not the one with MM, but Michael always supports me
I dont think its the board thats changed its new people coming along with new treatments etc I find it difficult to post now because Michael has been through all the treatments some have worked longer than others, some people want to know all the ins and outs and some dont. So its not a matter of not wanting to post or give support sometimes its very hard
God Bless you all

Suex

[DaiCroParticipant]

Hi All,

I hope it doesn't come across that I am decrying people's contributions, far from it. I understand just how easy it would be for me to withdraw quietly and fight my corner… with Janet and those I love beside and behind me.

The MUK discussion forum is just that… a forum… it doesn't say which direction the forum should take or what kind of community builds up around it, it allows us to determine that for ourselves.8-)

I imagine that the persona of the forum will change several times over the years… from informative and supportive , to familiar and free… and back again, depending on the current incumbents.

There are still a few of us here who remember the old board. That was informative, friendly and fairly free, without ever having that familiar close-knit felling of the past 18 months or so. But I was so grateful to find it… to latch on to Stephen and Gill as they approached and then took on the dreaded SCT procedure. But they (Gill) kept a blog… a blow-by-blow account of the procedure, complete with tips and techniques. They, and our lovely friend Gaye, made the place (the forum) accessible and friendly… far more than just a forum. 🙂

It was a time and a place… just right for me and I gladly jumped on their coat-tails. They are the reason I stayed… the presence of people displaying the openness of friends… to strangers.8-)

Perhaps that is all we need… kindness, openness and the human face… whose face doesn't really matter. I will rely on the fact that the worst kind of condition, terminal illness and all that comes with it, brings some people to the fore… with a willingness to fight corners, inform those just behind and raise questions that helps us all deal with a hand we never expected or asked to play.:-|

In the meantime I will enjoy the closeness of my friends (bugger cyber) for as long as I can… and hope that our friendship draws them in to stay awhile… and perhaps take up the mantle when we move on.:-)

Dai.

[BADGERParticipant]

Di
I always enjoy the closeness of friends:-) I really appreciate this site I dont always have loads to say but I have felt so much care from strangers
I have needed the support on many times so I feel I will always add my thoughts if they can help others when I was diagnose I nowhere else to turn to it saved my sanity 😉
Love Jo

[jmsmythParticipant]

Dia

Jo has voiced my thoughts as well about the Forum. Would be lost without it. Hope the pain has eased.

Love Jean x

[andygParticipant]

Hi Dai
Just thought I'd add a newbies perspective.
Since I've only been a member a few weeks I can't comment much on the history of the forum however since I plucked up the courage to post I have got nothing but praise for the forum. The support, advice and kindness from my friends that I have gained on this forum has humbled me. I now have somewhere I can rant and rave freely and get nothing but help and support from friends who take time out from their own personal battle with MM to reply.
I am struggling to get my pp's down towards a sct and at time feel I'm battling up a very steep hill but I do know I'm not the only one battling this horrid cancer. As I gain experience I will hopefully be able to give out advice and support.
Thank you to every friend that has increased my knowledge of mm
Keep on posting – as and when you feel appropriate.
All the best
Andy. xx

[PerkymiteParticipant]

I think all forums do go through phases as people come and go. I am a member of about 6 forums, dealing with different things of course, but the Myeloma UK forum is the only one I check into most days and read the posts. I do not always respond it will depend on what I am doing that day.

I think you must also take into account the limited number of people in the UK who get Myeloma, fortunately, there are never going to be hundreds on the site, just a "select merry band".

I am glad I found Myeloma UK and I am glad I met all of you, although I wish it was in better circumstances.

Kindest regards – Vasbyte

David

[BADGERParticipant]

David
I am glad I met you too
😉
Love Jox

[MariParticipant]

I will always be very glad that I found this forum and all of you here. I dont contribute very often because there are times when I dont feel i have anything useful to say. If I can offer support I do. I am very grateful for the support we have been given when we have needed it and would not want to think I was 'cutting and running' taking the support but walking away in the 'good' times. I am sure this is sounding all wrong, I am truly grateful and would wish to support everyone else as we have been supported, but at times I find it very difficult to find the right words,

Mari

[eveParticipant]

Hi mari

Last we heard,Stephen was going on Velcade I do not know if I have missed any post,but did the Velcade work,it has worked for Slim and he goes for SCTend of month. If I am correct Stephen did not get a lot of remission last time.!!!!

Hope things are good with you both.Eve

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