[ellenModerator]

Hello everyone. As you know we do suggest you read our forum guidelines and the registration terms to get the best out of using this forum

It may help to try and be mindful of other users, they may be in a different place and if the diagnosis is fresh they will feel very vulnerable, very anxious and will perhaps be feeling very sensitive.

 We all deal with things differently, some for instance will use humour as a way to cope and to relay their experiences, but for others, who perhaps haven’t quite got their head round things, this can come across as insensitive.

Others are quite forthright and ‘say it how it is’ and this may feel quite harsh to others who are more sensitive in nature.

It is so hard trying to convey emotions on an open forum and sometimes things come across the way they aren’t meant.

 I thought I’d take this opportunity to highlight a few pointers from the Forum Guidelines:

•  Emotions are easily misunderstood when you can’t see faces or body language, and you can unwittingly upset someone. Please think about how your message could be construed before you send it
• Your messages are most likely to be read if you come across as friendly, tactful and constructive.
• If you write when angry, upset or frustrated, try not to send your message straight away. Instead come back to it later and consider the effect it may have – you may find you want to rethink your wording.

All the best

Ellen

• This topic was modified 9 years, 10 months ago by  ellen.

[alicenorthParticipant]

I’m an occasional  lurker. I have to be honest and say that the reason I don’t contribute anymore is because of some “forthright” replies I received on a topic that the responder clearly didn’t agree with or had opposite views. They would have done better to have kept quiet, in my honest opinion. That and the new forum format has stopped me from actively participating. A shame, but I guess you can’t please everyone.

[wallaceParticipant]

Can I ask what prompted this friendly reminder?

[eveParticipant]

Hello Ellen,plus Alice and Wallace

I must admit I am forthright and say it as it is,so what can I say except I am sorry if I offended anyone.

I am a carer and do use the carers section,concerning my own husbands Journey,because I realise that hearing from someone who is on a down wood path,is not good news.
everyone has a point of view and everyone’s point of view should be respected,but why post if you are just expecting people to agree with you,this site I thought was about information,helping people who feel they are all alone,plus just replying to say welcome,we can help you!!!!!
If you look off Topic I think you will find what promoted the friendly reminder?

Many months ago I said that there is no place on here,for people in the position of loosing there loved ones,I have since then always been in to minds about posting,as I said before this when people need support,plus knowledge as things go from bad to worst.
I would have liked to have known how difficult it is concerning many of the aspects we are facing now ,but most people just fade away,from this site,what a lonely place to be in,Sue said it when her husband was given 3 months to live,friends,niebours ,found the biggest stone they could hide under,the O/T tells my they hear of this so often,people just do not know what to say!!!,this is one place were you should be able to come on and be forthright,or say it as it is,with no offence ,and expect support

• This reply was modified 9 years, 10 months ago by  eve.

[john62Participant]

Hooray I think am in
come on lets get this site back to haw it was it has gone flat,

I am probably the worst with email than all of you,

Just a few words of encouragement and reply to say well done,

love you all
john PS Those men and women in the trenches gave there lives
to give us fighting chance we will not let tem down

[eveParticipant]

Hi John

Without are lovely Dai it has gone flat,a great loss,.

Hope your still laying cement without to many aches and pains,may it go on for a long time,
Never asked you what part of mersyside do you come from,or are you a wooly back!!!!!
Eve

[PerkymiteParticipant]

I think all forums go through phases. The change over of forum format was a little traumatic some people just gave up posting I think. It will come back.

Kindest regards to all – vasbyte

David

[webteamKeymaster]

Hi Folks

As ever I’m completely open to suggestions and feedback regarding the forum (or the site in general). If you’ve had any difficulties accessing the forum or have any suggestions as to how we can make it better please either post on the forum or send me an email at webteam@myeloma.org.uk.

I’ve noticed a few comments from people saying that they struggle to access the forum but without feedback it’s very hard to work out why. This forum exists for you, so if it’s not delivering I need to know about it.

Looking forward to your feedback.

Stuart
Myeloma UK Web Team

[rebeccaRParticipant]

Hi John, Nice to hear from you again – hope you are super well – don’t think you ever posted your final SCT results? hope it did the trick.

Rebecca

[CarolsymonsParticipant]

I gave up posting too as the site wouldn’t allow me to sign in, but today hey presto it worked! I am afraid I am forthright too (unfortunately I think it is an Australian trait and often gets me into trouble) like Eve but surely in an open forum it should be for everyone to express their fears, views and thoughts openly. Otherwise why have a forum?

Carol

[hikernickParticipant]

There’s a community here which is obviously long-established. Unfortunately it doesn’t seem to welcome newcomers, which is the reason I gave up posting. I hope it will prove useful to some. You need a thick skin to persevere, though.

[CarolsymonsParticipant]

Hi Nick
I don’t know about your experience, but I never felt unwelcome when I was a newcomer. I am still a relative newbie really, as it is only 14 months since the myeloma gremlins ate my collarbone.

Carol

[eveParticipant]

Hi Everyone

I suppose as I have been on here 3 years I am an older now,as some of the people who use to post,there partners or themselves have passed away,

I always use to reply to a new comer even if it was just a welcome,but a lot of general information has changed in three years,so I am out of date with new info.plus it really bugged me,when you make the effort and they do not reply plus all my news is going from bad to worst and newbies do not want to hear the bad side they want hope and knowledge that’s up to date!!!

May be wrong but I like to see and have some knowledge of the person I am speaking to,I remember when I first joined,Min telling me not to be shy and show my face???? It was not intentional I just did not know how to do it,in fact if I wanted to change photo,I don,t think I could do it again, it’s grey matter.

To me it does not matter if you are 30 or 86,we all live in this Myeloma Bubble and over a period of over 3 years,it’s the people on this forum who get you through the hard times,I also understand when people get remission,they lock the Myeloma away ,and go out with renewed vigour and enjoy life as much as possible.thats the way it should be. Eve

[CarolsymonsParticipant]

Well said Eve…thinking of you and Slim with your new challenges….sending positive vibes your way.

Carol

[john62Participant]

Hi Rebecca
Just got back home rained off installing a big waist water tank in
the ground.

SCT 13 December 2012 out on 28 December back to work three weeks
Babington about the same time.

I do agree that you have to listen to your body
but you have to not let the week side of your mined dictate your decision.

It didn’t take me long to say to the lads were not working in this

the week side of my mined made this decision,

Its been 2 years last April 28 since I was diagnosed,

I new I had to go through this on my own

[Author]

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