Can you share your barriers to posting on the ... - CLL Support
Can you share your barriers to posting on the site? (This poll is primarily for members who rarely or never post/reply.)
Still learning. I will provide input as I gain in knowledge and experience.
I have answered the poll, as the upgrade to make HU more mobile friendly has had the effect of changing the way that I use/interact with the site.
I find the new layout poorly designed.
a) Because I am visually impaired, and
b) Because it doesn't open with content that would make the first time visitor feel that the contents apply to them.
Since I joined HU, I have always tried to help those who have newly appeared at their most distressing and frightening time ... allbeit that I have only my own CLL experience since 2006, as yet not treated.
Personally, the upgrade has meant that I have lost the feeling of belonging to a community. I suppose I would say that ... 5 - Don't feel the content ... and 7 - Feel that the site is restricted ... are the main points of the poll for me.
Steve
If the search facility is useless, then anything written just disappears and any new member has not read it and cannot find it….
WHY IS THE CLLSA USING HEALTH UNLOCKED ANYWAY ….????
IF HU do not soon correct all the various problems, then I would support a move by the CLLSA to move to another site or create their own.
I suspect that these days there would be regular ‘off the shelf’ software available that would easily provide the required forum for members.
Steve, you'll be pleased to know that we plan to use our next poll to find out the most annoying issues with the new site. You are not alone in your concern about the deficiencies in the 'welcome' page, i.e. the first page seen when you first go to healthunlocked.com/cllsupport.
And in a brief answer to Dick (Kwenda), the first HealthUnlocked site was quite different from what we have now. Most importantly, it had manual tagging so that we didn't lose content. An assessment of how well the current HU offering would meet CLLSA's needs for an on line presence may well have resulted in a decision NOT to use HU. Also, the HU site IS built with 'off the shelf' software.
Neil
Neil you wrote above ' Also, the HU site IS built with 'off the shelf' software.'
While the software in use might be acceptable for some of the other HU communities, clearly it is NOT for our CLLSA group.
This should be brought to the attention of HU with some force, as they have not in the past taken much attention of the problems raised, other than the usual vague marketing replies.
There is much 'waffle' in their replies and on the management pages, but no real positive and clearly defined action points.
Some rigorous analytical engineering thought processes and answers are needed.
I find your site to be wonderful. My husband was diagnosed at age 60 when we lived in Florida. We were told it was no big deal, would probably die of something else. Recession hit, my husband's business tanked, could not get insurance because of pre-existing blah blah blah. At age 64 he became very ill and almost died. I was able to find insurance for pre-existing conditions through government site so our $125,000 hospital bill was mostly covered. My husband is now 66 (67 in October). We live in SC, our oncologist is wonderful. We are now on Medicare with supplemental. My husband has had 2 relapses after chemo so has now been started on Imbruvica (also in a clinical trial wtih ubiluximab and Imbruvica). So far it is our miracle. I have been able to keep up-to-date the past 2 years by first belonging to the CLL FB site and now this site. It helps being a caregiver easier. I have recommended this site to 2 more CLL patient's that I have come in contact with recently. Thank you for all your help, it is truly appreciated.
I enjoy this site because it gives great information and reading what others think also gives me insight into how others deal with cll.
How strange, at the top of the replies it states there are 15 replies, yet I only see seven. Is it replies (like this) or responses to the survey. (1, 10, 11.... 1111, how difficult is that for a computer).
Rob
So, decided to edit my reply to apologise to all for the IT 'in-joke/humor) and I'm not allowed to because the title has to be between 1 and 140 characters. Something is really falling apart here.
rob (with apologies for IT humour and replying to own reply.
Rob,
I too noticed the count discrepancy, but wasn't aware of the edit bug. I'll report this to HU in addition to the inability to share a poll via Facebook or Twitter.
Yes, those of us who have worked in IT or digital electronics know that "There are only 10 types of people in the world: those who understand binary, and those who don't."
Neil
But 1 and 1 is eleven isn't it?
Are polls locked or unlocked? I recall discussing this with HU and pointing out that they cannot be shared unless as a poll is able to be locked because of the privacy issue with regards to comments. perhaps this has been taken on board???
Polls have always been unlocked; there's never been the ability to set them private. That's pointed out in our community's pinned post on security. Google doesn't know about this poll (yet?) but the poll and replies are visible to non-members...
01000111 01101111 01101111 01100100 00100000 01001111 01101110 01100101 00100001
roubaixinteractive.com/Play...
01111001011011110111010101110010011100110010000001110111011000010111001100100000011000100110010101110100011101000110010101110010
This may sound rather selfish (and head in the sand) but, as I am in a "watch and wait" situation, I try and forget that I even have the condition. I don't want to read something that affects someone else and start thinking "have I got that" ...etc. My next blood test and review appointment is due at the start of September. Each time I fear I will hear the dreaded words "you need to start treatment". As my Hb is low and I have neutropenia, I think it can't be far off. Just want to forget about It till it happens!
Holly, I'm in a similar situation to you, but also with falling platelet levels, so like you, I've been wondering if I'll also hear "you need to start treatment" at recent haematology appointments. Neutropenia is not a trigger for starting treatment, but worsening Hb could be, if it is evidence of progressive marrow failure, or due to autoimmune anaemia not responding to standard treatments. I hope you find that reassuring and that you get a further reprieve next month.
Neil
Thanks Neil. While I do not participate much in this forum, it is always reassuring to know that you are not alone and the forum can be turned to for support. Best wishes.
It would be so interesting to know what the 'other reasons' are if members feel able to elaborate.
Newdawn
I feel that as someone who has been on watch and wait for over 14 years, and living life as before my diagnosis, I cannot contribute to knowledge of those who are more unfortunate. I am currently on annual check-ups.
Hi circian111
just knowing that one could still be on W & W 14 years on is encouraging, especially for the newly diagnosed.
Thank you for posting here.
Long may you continue, best wishes
Bub
It's posts from CLL'ers like yourself circian that give so much hope to people on W&W. Every time I read a post from a fellow sufferer who has had the condition for a decade and more and is still in reasonable health, it gives me such hope so please don't underestimate your value.
Newly diagnosed people love to hear CLL journeys like yours. Long may it continue!
Regards,
Newdawn
Diagnosed in 2005, still riding my bike up to 40 miles a day or hiking in the mountains..
CLL is not always totally debilitating or a threat of imminent demise.
' The Median is NOT the message ' Stephen Jay Gould.
And that's exactly the message myself and many others want to hear Kwenda! Long may it continue for you and give inspiration and hope to those who don't experience debilitating effects and respond well to treatment. We are all moving at different paces.
But I hope we can be there with shared experience, information and support for those less fortunate on the CLL path.
(Which includes a family friend who died recently and very rapidly from the condition.)
Newdawn
Bad news travels faster than good news…
Those who ask questions are those needing some assistance, we don’t hear from the ‘ Lurkers ‘ who are having a long period of watch and wait, or who have had a successful treatment.
I have a friend with serious CML so know first hand what some leukaemia patients have to go through. Also one notes from reading on other forums that some regular members are no longer with us. We have not completely beaten down CLL, but I take great hope in the new drugs that are starting to be used or which are coming down the pipeline..
Hi I was diagnosed in March this year and have been trying to familiarise myself with the lingo before putting pen to paper. On watch and wait with 3monthly appts, which I absolutely dread! Also have been aware of adopting non productive British attitude of "not making a fuss", which is ludicrous...if not now, when? There may also be a bit of denial of diagnosis, and putting my hand up to join the gang and not merely being part of the audience has somehow been difficult. My G.P. initially did not want to bother with testing for C.L.L. saying he had loads of patients with it and it really wasnt something to worry about. Luckily my son is a Dr and insisted on my being checked out as I had shingles for months and was the median age. So these were the restrictions holding me back from posting. However am feeling very mature now about "owning" this disease, and will not hold back in future. Have found site to be incredibly informative and supportive.
I'm tired of changes to the format. I'm totally irritated by the fact that I can't see the first line I type - first two today - because they're covered by the green bar. Fixes are not user friendly. Default should be members only, NOT everyone. Many don't understand the implications of posting to "everyone" or realize that the choice is at the bottom of the post.
It seemed like it was all the same people at one point but I realise now its all very supportive of us new uns.
I have certainly gained in confidence and will certainly reply and post more in the future. Although I do not have all the knowledge.
No one could honestly claim to have all the knowledge, but as a sharing community, we do cover a great deal of what it's like to live with CLL. Most questions seem to be responded to with helpful answers after all 
.
If we used just 3 years (say) of experience of living with CLL, then collectively, this community has about 50 lifetimes of personal experience - and that's without considering the links to CLL world experts,encapsulated in papers and videos!
As someone who works solely in social media, I am careful to not promote my posts over the importance of patients and caregivers sharing and learning from each other. When an appropriate moment comes to insert something valuable into the conversation, I do so, but never at the expense of the others' needs.
@Kwenda - I ended up a volunteer on another HU group because HU took me to the wrong group, but it is one I relate to. I can assure you that this format works less well for that group, because it does not have members with the IT knowledge that many here have. I have passed on things I have learned from people here to that groups Admin. Every change in format makes this site less user friendly. I tend to go to other sites instead more and more. I am tired of needing to explain to members on the other site how to find information and other points about using the site. Those things should be obvious. And now to edit I can only see two lines at a time. Using this site is increasingly irritating. I don't know if the other post went through. AGH!
The posts from people on "Watch and Wait" resonate with me. If we are to "get on with our lives" then there has to come a point where we no longer check on here for every new development in treatment or rare complication. I still believe a more personal approach would be obtained if we had the ability to chat one-to-one or in groups in real-time: something I have posted about before.
I also believe that there is nothing wrong with not posting and it is starting to feel as if there is, as this topic has come up at least twice in the last few months. Why shouldn't people just watch what others says?
Regards,
zentangle
Zentangle, I'd say that the genuine concern about not hearing from our many readers is encapsulated in option two of the poll. We've obviously got some work to do as a community, given that the second most common response to the poll now has 19 responses, showing that more than 25% of our quiet members are intimidated from contributing. Stunned says it well what kind of community we wish to aspire to in healthunlocked.com/cllsuppo...
Neil
Neil, I don't doubt the good intentions of the group's enquiries, but would suggest that, if you keep asking reluctant contributors why they don't contribute, you may run the risk of further intimidating them, which I am sure you know. When I did jury service, there were 7 of the 12 jurors who did not wish to contribute to the discussion. Some people just don't want to post, and won't want to post why they don't post.
Regards,
zentangle
Good point Zentangle, but members can complete the poll anonymously without comment. This poll could aid us determine what may be preventing those willing to post from posting.
there are a few early trends , of course this this poll could be self selecting participants.
from HU: "It’s a known fact that 50 - 90% of online communities consist of silent observers, aka ‘lurkers’ (Zhang, W., Storck, J. 2001). HealthUnlocked Communities are no exception to this, "
Our CLL community is still one of the most active and engaged groups of members across the entire HU platform of 200 groups and is an exemplar of what a healthy community should be.
I am personally proud to be a part of this group. Those not posting are very important as they make up the vast bulk of our activity and the high level of site activity proves people are using this resource. we may have no control over functionality but we can work on content ourselves.
According to the CLLSA community analytics 50% of community members were active during last month that was .
594 in July
number of July sessions: 26,514
number of July visits: 91,463
Average July session duration: 00:10:37
These figures are a marked increase on June and activity has been climbing consistently for a while.
My take from this so far is we are all doing a great job together and perhaps could do better to help people feel confident. The trending popularity of poll questions 2 and 7 are already suggestive.
More non-scientific CLL discussion and general conversion may help many more.
That jury situation is shocking zentangle! Thank goodness 11 out of the 12 didn't want to contribute or it would have been a very dangerous decision. Did the non contributors offer a verdict or simply leave it to the contributors to decide?
The jury should have been discharged and replaced if so many were unable to contribute to a balanced decision surely?
And I'm not suggesting for one minute the analogy bears any resemblance to members on here who choose to participate but not post. I think the poll is useful because it's highlighting reasons why people may not only choose not to post but also the barriers as to why they feel unable.
Surely there is a difference that as a community we would want to address? We are all in this together and even people who are not symptomatic can choose to help others from positive experience.
It's not all doom and gloom, we get some really heartwarming and encouraging stories on here! They certainly help me.
Newdawn
My wife has been diagnosed with CLL so I really appreciate being informed and kept up to date with developments in the treatment of CLL. Please keep up the good work. Many thanks.
I can think of a number of "other" reasons I don't post regularly, but I don't have time right now to reply in full - I hope to do so at some later date.
(my reply above might, in fact, be my #1 "other" reason. Finding the time and energy to respond fully, coherently, and intelligently often seems daunting to me, which makes me admire those who do post regularly and makes me especially appreciative of the 'givers' on this site who are continually providing their expertise, experiences, thoughts, ideas, and resources. A corollary to not posting due to time and strength constraints is that the probability of writing always diminishes the longer I put if off as what I intend to do usually does' t come to fruition once it becomes part of my mile-long [kilometer-long?]
'mean to-do list'. I have had to settle for being proud of myself just for keeping up with current posts, especially when I read through included links).
That's an incredibly helpful and honest answer Gemit. One of the reasons I posted how useful it would be to know 'other reasons' is not out of intrusion but simply that the poll allows for a limited number of options and it occurred to me at the time that time constraints/exhaustion and health restrictions might also feature.
Regards,
Newdawn
just enjoy reading it ever day
I joined the site to gain information about CLL for/and to help me adjust to what CLL means for someone close to me who has been recently diagnosed but would never access such a site. Therefore as this is not my own personal experience I can only contribute on issues that I feel I have either knowledge about or give support to other members when/if appropriate.
Lotus153, you are far from alone in your self adopted caring role, so thanks for reminding us of that significant proportion of our membership. I know of many instances where someone (usually a partner) takes on the challenging role of helping someone, for whom they care deeply, live better with CLL, where the person with CLL can't or won't do so. We do have a specific category for carer related submissions, but sadly we could do with much more content there...
Is there a reason why poll responses won't accept recommend ticks? I've tried with a few posts and for some reason they register then disappear again which is a shame.
Newdawn
Well spotted Newdawn! I'd recommended a few replies but hadn't noticed that they cleared when I came back to the poll. Refreshing clears them too. Another bug to report...
Hi as i have said in a post before, I don't understand most of the acronyms and have suggested a glossary. That said I do post when its something I feel I can add to, to give support to newly diagnosed folk or share the happiness of those who have had good news.
I'm SLL not CLL and even though the medical profession treat them the same my experience is totally different from what the CLLers post. I know we are very much in the minority so I read mainly to keep up with latest treatments.
I'm just not used to interacting with people online and feel slighty inhibited by it. I use email more than social media forums.
I have read posts and resources provided for this site for about a year, but have not posted. I'm 63 yr old and was dx in late 2012 after a routine blood test for a physical. I'm in stage 0 on watch and wait, with only incremental changes since that time. I truly appreciate the existence of this site, because it gives voice to many of my private anxieties about day to day minor health issues. I know I've been lucky so far, but since my father died of lymphoma and a first cousin also has it, I don't take anything for granted--even my oncologist's good prognosis for me.
When I've had other issues in the past, I've learned as much as I could and advocated vigorously for myself when necessary--to my own benefit. Perhaps because I'm in an early stage of CLL, I vaciliate between wanting to learn more and wanting to just live as joyously as I can now and not consume myself with worry. It's as though I dip my toe in the pool regularly to recognize that I do have cancer, but I don't want to be wet and shivering all the time. I know that many of you understand this way of living. It gives me great comfort to know that you're all here sharing your experiences with and for each other, and that when I need answers or empathy, I can just ask. Thanks for that. Having been involved in my father's care during his chemo and then taken on total responsibility for my mom's healthcare until she died a decade later, I have endless empathy for both caregiverers and cancer patients. It doesn't feel that odd to have walked around the window from one point of view to the other. Shifting perspectives is what teaches us and enriches our lives, but it makes a world of difference to have company.
I post if I feel I have something useful to contribute.
I would reply to others posts if I thought I had something of value to contribute from my own experiences, but my knowledge of the condition itself is limited and I feel others are much better qualified to reply. The site is invaluable, I feel reassured reading others posts and experiences and no longer alone and isolated with this condition, so thank you so much for its existence.
Why am I getting this in Portuguese? This started about a month ago.
Dragonlady12, please forget my earlier response. You can change your preferred language setting here: healthunlocked.com/settings
(You can reach this page by clicking on your username in the green menu bar and selecting 'Account'. The preferred language setting is about half way down.)
Sorry for the confusion - I've not come across anyone with this problem before.
Hi,
Firstly I would like to say what a great forum the CLL Support Association is. I have used it for a couple of years now and have read many useful and helpful topics regarding the treatment and day to day living with CLL. I myself have made a few contributions.
I would like to tender my personal view to the question regarding "sharing your barriers to posting on the site"?
One of the comments already made in the voting is "Feel that the site is restricted to 'regulars' and I don't know how to feel part of it" My own view is similar with the exception of the "and I don't know how to feel part of it" bit. I believe there are a lot of people like myself who would like to respond/reply to some of the topics raised but find someone has already beaten them to it. I often find an email with a topic I would like
to reply to only to find that it has already been addressed by several of the regular contributors. It is rarely the case that what I would have liked to say and respond with hasn't already been covered, and in a very short space of time since the question was raised. Sometimes the timestamps on the replies from the regular contributors
are only minutes after the timestamps on the original query. Please don't get me wrong, I think the regulars do a sterling job and probably have far more experience that most. I am also a member of the "UKCLL Forum UK" (cllforum.org.uk) which is a lot smaller in the scale of things, but because there are no regulars as it were that answer questions almost immediately all members are able to respond to many more forum questions, and do so.
I believe these views may be held by other members as well.
Kind regards
Kevin - Essex, UK
Thanks for your informative response Kevin. I guess one of the adverse impacts of monitoring the site content for members in your situation is that I do see the opportunity to respond earlier and the same goes for other regulars that monitor Newsfeed rather than wait for notifications. It's a difficult balance. I often leave a post for someone else to respond to and only reply if there has been no response for many hours. Sometimes I too reply and find that by the time I've done so, someone else has provided a far more helpful reply than me.
I think one of the reasons for the growing popularity of this community is that people generally do get a helpful response fairly promptly. Along with many other regulars, I'm well aware of how frightened and alone some of our members feel and don't like to leave such anxious posts unanswered for long. I think it is great to see that in these situations I often see a reassuring post from another member that doesn't actually answer the question asked, but reassures the poster that they are not alone.
I don't know how much visibility this topic will get buried in a reply to a previous poll. If there are little or no further replies, I'd ask you to please post your reply above as a new post and ask for community feedback. It is a very important topic that you've raised. You may well have a good deal of company.
"UKCLL Forum UK" started out a year before this site I think and I know that there are quite a few like you that are members of both sites.
Neil
PS Love your username - know the feeling well from CLL induced fatigue, etc.
Seems that there are a few individuals that have something to say about everything. Others are here looking for emotional support and get there fix of sympathy. Wading through this there are some very good links to actual information about treatments and lifestyle changes that promote better outcomes and quality of life. So far I have found nothing on how the business of cancer works. Whether your in a universal medical program or a pay for serve program following the money path will give a very good picture of the actual goals of the players.
