[ellenModerator]

We are aware that there have been some very emotional posts of late and that, sadly we have lost some much loved members. We are very keen to address this and take on board the suggestion to have a separate category where the topic of end of life can be discussed without upsetting those who perhaps find it too difficult.

However we don?t want to rush into creating a new category without giving it some thought and due care and attention

We would be very interested to hear your thoughts and suggestions around this very sensitive subject

Ellen

[GillParticipant]

Dear Ellen

I have decided to bite the bullet and be the first to voice an opinion on this.

It is my husband that has mm He was diagnosed at the age of 53 in October/November 2008.

I hope that there is a cure found for mm tomorrow and that Stephen and I will both live to a ripe old age and then die at the same time and turn into intertwining trees like Baucis and Philemon were in Greek mythology.

Unfortunately that is not going to be the case. When the inevitable does happen do I have to walk away from all the support and friendship that I have found on here aswell? I hope not.

If a category for discussing end of life is added then we all have the choice to look at it or not just as we can with any category.

Stephen never posts on here but is always very interested in what is said and the information that can be found. He also thinks that a category for end of life is sad but needed.

All the best Gill Nash

[tomParticipant]

Hi Ellen

Thank you for kicking off this difficult subject, but here is my thoughts::::

I am the one that has MM and am helped by My Wife, three sons, three daughter in laws and five (soon to be six:-D ) Granddchildren, and yes we "My Wife and I" talk about "end of life" and yes Elaine said she would look forward to the help and advice that could/should be given after the loss of a loved one and for those that post on here shouldn't feel as if they have to leave because of the loss of a Partner.

So for me I say yes we need another thread/link to help those who have lost their loved ones way too early.

Regards

Tom "Onwards and Upwards"

[brochoParticipant]

Hi Ellen thankyou for responding to us on this very sensitive subject . I do think there is a need for this category for those who have lost their partner , parent or sibling but also for those of us who after several years of treatment feel the need to look at choices for the final stage of their myeloma journey It would be heartbreaking to think that those who have lost someone felt there was not a place for them on here, in fact they are a vital part of our group and would be very much missed. For those who feel its not for them it can easily be avoided if it is a seperate category Thankyo again we are very lucky to have such proactive support from you all Bridget

[eveParticipant]

Hi Ellen
I have been posting on here since February this year,and found some thing I believed did not exist(cyber friends),so yes I mourn their loss,it also brings it home,this is going to happen to me.:-(
I would have loved my husband to have sailed through this horribly treatment,and come out the other side,like Jet,who only wants positive vibes in her life,most people would want to maintain a sense of well being 100%.
We have to find a balance,so people with good news do not feel guilty about posting,and people who are desperate for help,do not feel guilty about up setting people with their problems.I do not know how you can achieve this?

I do think,talking about death,could be helpful and practical,but to make it a separate issue,could isolate people,

You cover most topics on this forum,every thing is informing and practical,funny and sad at times,and we all try to share this.Its like the saying if you did not laugh you would cry.So I am sitting on the fence on this one:-S Eve

[ElizellenParticipant]

Thank you for considering adding a special section for posts around the topic of grieving and the end of life.

I think it wil be useful for people to know there is somewhere they can post without fearing they are "ambushing" anyone's feelings of not wanting to think about the subject.

[gina45Participant]

Hi Ellen, as you know its my mum that has mm. i think its a good idea to have this new category as like others have said it then gives people the choice to look or not as for some it may be too soon or too hard to face it.
Gina x

[teds31Participant]

Hi Ellen, as a newby, and never had any treatment my opinion doesnt carry as much weight as some but I can see what you mean from the point that people may not post when they know the end maybe approaching,because they dont want to upset people who are trying to be upbeat,this must be true because here I am trying to write this with out saying the word (dying).So long as the special category doesnt exclude these people from useing the rest of the forum. Ted

[MariParticipant]

Dear Ellen,

As a carer who is facing the eventual but certain loss of my partner ( with mm) and as someone who hs witnessed the grief of those who have recently lost their partners I can only say, Yes Please we need somewhere we can talk about grief and loss

Mari

[zasrsParticipant]

Dear Ellen
I think another post is needed, I have had such suppourt from this site and to leave now will give me another hurdle to overcome with Gordon and my father dying within 6 weeks of each other any help is gratefully recieved, plus hopefully we can help each other, it is great to know that i am not the only one going mad, becoming very angry with everyone, particulary mobile phone companies. I am also very aware that it is so easy to say the wrong thing in the wrong way and upset many friends on the site who coping with mm, some of who are having wonderful good news at the moment, those who do not wish do not have to acsess the site. Thanks Ellen and all at muk for being on the end of the line or cyber space.
Sarah xx

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