Could I make a cheeky plea?

I wonder if site members would feel able to provide even basic information on their profile as it makes it so much easier to relate to a person if you at least can identify their gender. I know it's a bit cheeky and I wouldn't dream of asking people to provide any identifiable information or anything of a personal nature but I find it frustrating to be conversing with a fellow 'sufferer' knowing nothing at all about them.

I haven't provided a geographical location or in-depth personal details but it helps enormously to have some idea of where on the CLL 'journey' people are or indeed if they are a carer or medical professional with an interest.

Do others agree?

In support,

Newdawn x

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  • I don't think it's cheeky to ask this Newdawn and I agree completely with what you ask. Nobody has to divulge much at all - just the basics... it is difficult sometimes not knowing anything about who I am speaking with ie gender etc.

    Thanks for mentioning this

    sparkler x

  • Thanks for the post Newdawn. Please can everyone complete some detail in their profile a minimum of information, what country and if carer, patient or other would be a help.

    Nick

  • Thanks Sparkler and Nick, I half expected to be lynched for asking this as I know people can be touchy about divulging information but as you say, it really is only basic stuff (unless you feel able to share more).

    Cheers,

    Newdawn x

  • It it set up correctly, for example when I look at Newdawn in the directory I can read the little blurb about you but not where you are from/gender/age etc!

    I have added my DOB, geneer and where I live can you see this?

    Rileyesq

  • *gender

  • Rileyesq you are correct personal details are hidden from view, The map does give an approximate location and as you are not identifiable does show location. (however some people are shown in the water or in an area with no land marks? HU are working on this

    It will help if we write a sentence in our profile that states if we are a patient and reveal as much as you are comfortable with.

    (i am male by the way LOL) We need to work on this

    About me

    Diagnosed with CLL 2009 untreated on "active monitoring". AKA "watch and wait". Trying to substitute the "i" in living life to an "o". Hanging out with you guys helps.

    Working as a volunteer for our national support charity.

  • Oops, yes you're absolutely right Riley, I have included the information in the basic info box but just read that this isn't displayed to the community. Have amended it.

    I did initially give my geographical location but freaked a bit when I saw my little town identified next to my name so I confess I felt compelled to remove that.

    If I'm honest I'm really more interested with where people are in terms of their CLL and how they're coping as I indicated in my initial question but I appreciate not everyone wants to give more than the basics on the profile.

    Newdawn x

  • Rileyesq, when I go into the directory it gives me a geographical location for you with a little map but next to your avatar, it says, 'not available' so there's actually no information. Still don't know your gender etc. unless we are seeing different things?

    Newdawn

  • Hi,

    That is because personal info that is added is not made available to the public unless you add it into the basic info box! Will update some info in there but not sure why gender is relevant!

    Rileyesq

  • Have re posted as this went straight to rileyesq above

    Rileyesq you are correct personal details are hidden from view, The map does give an approximate location and as you are not identifiable does show location. (however some people are shown in the water or in an area with no land marks? HU are working on this

    It will help if we write a sentence in our profile that states if we are a patient and reveal as much as you are comfortable with.

    (i am male by the way LOL) We need to work on this

    About me

    Diagnosed with CLL 2009 untreated on "active monitoring". AKA "watch and wait". Trying to substitute the "i" in living life to an "o". Hanging out with you guys helps.

    Working as a volunteer for our national support charity.

  • I have just used the "update my profile function" and put in the minimum . Please if you could provide information using this function it will help conversations/comments and assist when questions are answered.

    Example:

    About me

    "Male, patient , pre treatment, diagnosed three years ago. UK"

  • yes, I agree. I would like to find any other younger patients north of the border. Would be interesting to know kif anyone else out there.

  • I agree. I am now going to check my profile.

  • I've updated mine, hope all can see.

  • I can see you're in the sea LOL

  • Surely it should be left up to the individual member, and without any pressure, to decide if they feel comfortable with divulging any personal information. This is a support association, and its purpose should be to accept and respect members' anonymity. As we should be aware, cancer affects people in various ways and this 'Support Association' should accommodate that diversity. If a question is posted on here, then it is a member's choice if they wish to respond to it, regardless of gender, stage, geographical location or where they are in their CLL journey.

  • Hi Adam I agree with the sentiment of your comment, and am not suggesting people divulge personal information. We do have slightly different protocols and approaches on different continents, knowing what country someone is in would help them as well as the poster providing information. It is up to the individual and.

    This is a reasonable request and of course is optional..

  • Hi again, in the 'cheeky plea' question, geographical location wasn't the issue, conversing with someone without knowing anything about them was.

    I can understand how different protocols and approaches would be important and maybe should be established or accommodated within a response.

  • Adam, sorry if the request offended you. It is of course optional and there was no suggestion that anyone should supply anything that they feel uncomfortable with or which they feel compromises them in any way. Which is why I've given my gender, age and condition status without divulging geographical status.

    I had hoped that this site wouldn't simply be a question and answer exercise but would engender a common sense of community and support with people who share my rather unique condition. As such it requires a degree of mutal trust and even a degree of vulnerability at times. Personally I find that a bit difficult if someone couldn't even feel able to divulge their gender or how long they've had CLL.

    Does that really compromise anonymity? I hope not because I wish to preserve mine without losing the valuable support and advice people on here can give me.

    Warmest regards,

    Newdawn

  • Adam

    yes sorry how much information you divulge to help others with there reply is up to you. I am used to always checking someones profile before responding in the Macmillan CLL group. Knowing something about someone seeking information or support does aid with the relevance of the reply or comment..

    I am assuming that people will in time provide more information, from experience this has been the case, following a settling in period after joining people do tend to update before posting. It does help with conversation. Also many never post and are happy to be a silent part of the community that has always been the majority. I hope this facility is useful to all.

    Nick

  • Hi Adam.

    I'd just like to add, that if we have to explain each time we post any comment, what stage of CLL we are at, when diagnosed, if treated, male or female ... we may be a carer and not a patient, then there's going to be a lot of repetiion. Far simpler to at the least put up these basics on our profiles, for all to see.

    After all we have all joined a CLL support forum...

    sparkler x

  • Just like the Macmillan site, this is not an environment I which to be part of.

    My mistake.

  • I am sorry to hear that Adam.

    Rileyesq

  • I too am very sorry to hear that Adam. And I'm particularly upset because it was my question.

    I asked the question with no intention of creating upset or offence. It wasn't meant to suggest a mandatory response (who am I to suggest that, I'm just another member), nor was it to embarrass people into divulging more than they feel comfortable with. This is the woman who hasn't even disclosed to her family after all!

    The common denominator we all share is that we have CLL but even that is so different for everyone and I personally benefit from the richness and diversity of the experience and advice shared. I'd like to feel that in time we come to know each other as individuals but that doesn't mean prying into private details about family, work, finances or anything else that is unique to us. People give what they feel comfortable with and that's how it should be.

    And yes maybe I'm wrong wanting to understand the uniqueness of the person I'm speaking to on here. But this is a cancer support site and I don't want to have to go all pc. I'd just like to know in order to give a more appropriate response. For example when I joined another site after diagnosis, I had sweats which mimicked CLL night sweats but were actually attributable to the menopause. People were able to advise me on the possibility because they knew I was a woman of the right age (or wrong age!). And we can see from the other posts that people are looking for fellow CLL'ers with their profile. It does help.

    I've felt hurt overnight that Adam felt he had to leave and I did try to message him without success. I sincerely hope he didn't feel 'ganged up on' because we unfortunately all overlapped in our responses as can happen on here. I just wanted to explain that.

    Hope all are as well as possible today.

    Newdawn

  • Newdawn,

    Please don't take an individuals comments to heart. People will give what they are prepared to give, and clearly knowledge and support whilst maintaining anonimity is why most would show an interest; so your point was, and is, relevant. I have told my partner and daughter of the CLL, but kept silent to all but a few key friends so I can very occasionally talk about my feelings. I'm "well" and living life to the full, for as long as I can get away with it! I too hope that Adam finds what he requires.

  • Thanks Robert, yes I hope he finds what he needs too. Appreciate your comments.

    I hope people will indeed feel free to make their views known but it does concern me when they feel compelled to leave a site.

    Regards,

    Newdawn

  • Entirely agree - just updated my profile

  • Good for you being an active runner in spite of your health condition pilch, long may it continue!

    Newdawn x

  • I have just updated my profile, hope you can see it.

  • Hi Olyocl, took a look but nothing in your profile. Maybe you've updated the profile that's not for public view?

    I see you also live in the middle of a field far away from civilisation too according to the map! Lol! I think they're working on that little glitch.

    Hope you're well,

    Newdawn (aka Jue) x

  • I just 'enhanced' my profile. In the public part there is now a me: and a cll: can someone please let me know if it is visible? Thank you,Rob

  • Yes it's visible Rob.

    You might need an avatar pic, that assigned one looks suspiciously female! (or a male with a full curly perm! Lol!)

    Newdawn

  • Thank you Newdawn, hehe.

    Actually, it might be slightly closer to the truth than you think. One of the unnecessary risks I identified as I started treatment was having a haircut. Hairdresser waving scissors Aros my head and sitting for half an hour with a load of people unnecessary. I currently look more like I did in 1972 than since apart from, I had no beard at school.

    If I find a beards avatar I'll get it changed, thanks for checking the profile, rob

  • Fine by me, any thing you want to know?

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