Yes, we've had our ups and downs, but thanks everyone for staying involved (about 45% or 900 of you in any given month) and making this community so supportive. Many thanks to those that keep us informed on developments towards a cure for CLL/SLL and how to live fuller lives with this still incurable cancer. Particular thanks to all who make the time to check if they can support those asking questions. Even just acknowledging that someone is listening and that further responses can be expected from others that know from personal experience what the poster is going through and can offer some helpful suggestions make us feel less alone.
It is just over two and a half years since this community commenced. Just look back at what has happened in the CLL world in that time and think about how different living with CLL (or even living without it!) will be in another two and a half years!
Don't forget that this site has a secure Private Message (PM) facility, by which you can safely share private information with other members - including email and contact information, which you should never do in posts/replies for your own security.
For those that have never sent/received a PM and aren't sure how it works, read these help pages:
Why not take the time to personally thank someone via a PM who has significantly helped you in the past? If you'd like some help, I'm happy for you to send a test PM to me (but please, not all of you at once ). Likewise if you've used the PM system and would like to help others become familiar with the process, just reply to this post, inviting other members to send you a test PM.
And if you haven't posted or replied, here are the help pages explaining how to do that:
If your post/reply doesn't turn out how you intended, you can edit it any time - and that includes making your post private to this community. (If you want someone else's post set private so your reply is private, ask for the poster to do that in a reply and it will be done by them or one of the administrators.)
Finally, thank you everyone for keeping this community's friendly, extended family atmosphere that was established so successfully by the early volunteers and members. It's a huge credit to all of you that we've grown without losing that feeling of belonging to a close knit, supportive group that deeply cares for its individual members.
Neil
Written by
AussieNeil
Administrator
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Thankyou, thank you, thank you!!! I have just filled out an online survey about blood cancers & I said if I had known about Healthunlocked when I was first diagnosed I would had all my questions & more answered. I believe finding out more information about CLL has taken away my anxiety & realising I am not the only one with CLL!! This site has changed my life so thank you.
Thank you Neil for all your hard work .I haven't been a member of this family long (and it is a family ) but I have found comfort and support from here that I never knew was possible.I feel already that I know so many people on here . I am no longer so frightened as when I first joined as there is always some one That will take the time and trouble to answer my questions to put my mind at rest .
You do great work with all your knowledge .Thank you .
Thanks Neil for doing such a fab job for our community and for us as individuals. You and the other admin/volunteers are always so prompt with responding to postings when so many of us are in real trouble and are looking not just for empathy but some informed comments or references to available links. Big hug!
I've been closely watching for the number to hit the 2,000 mark and it's a bittersweet moment really. Yes it's absolutely fantastic to see our site flourishing and supporting, but every new member brings with them a diagnosis they'd rather not have.
We can all remember dx day and to me it felt like a black fog descending. To be able to reach out at that time through the fearful darkness felt like a lifesaver to me. This site wasn't in existence then but many of the same people were and thanks to Nick and the original members who contributed to the development of this community, we now have a 'soft place to fall' and a place of complex but invaluable information sharing. And thank goodness for our resident gurus, CLL nerds and those who enrich us from the experience of their own hard knocks in life!
Ok it's a site with its technical frustrations but hopefully it's becoming more user friendly for most. I know Neil will not have started this post to attract attention to his efforts but they cannot be ignored. Good admin keeps a site focussed, mutually respectful, purposeful and free of the scammers and snake oil sellers and we are lucky to have Neil and Nick to ensure that happens. And happens tirelessly.
Onwards and upwards together...we have SO much to be hopeful for now on the CLL landscape. And one of these days they'll be no need for a CLL/SLL site because it will be confined to medical history as 'one of those old diseases that the medics cracked years ago!'
Yes it is a bittersweet occasion Newdawn, particularly when each year there are roughly 10,000 in the USA diagnosed with CLL, a further 4,000 in the UK, 1,500 in Canada and 1,000 in Australia. So for these countries that comprise 85% of our membership, there are roughly 16,500 people diagnosed with CLL each year. The total membership of the major CLL forums is under 15,000, with quite a few members having multiple memberships.
We can hope that we'll be talking about that number cured rather than diagnosed each year in the near future and that the CLL forum memberships will be in decline, with much of the discussion over which treatment provides the best chance of a cure with the least side effects.
I'd like to add my thanks to everyone else's.. to Neil and NIck and all the volunteers, and everyone who so generously responds to others and shares their joys and sorrows.
It will be great if a time comes when, as Newdawn has said " they'll be no need for a CLL/SLL site because it will be confined to medical history as 'one of those old diseases that the medics cracked years ago!'
On the other hand, if that happens, I will miss everyone... I've met some wonderful people here...
Maybe, as Neil says, the site will continue, but with discussions more about which treatments are best for different genotypes, and dealing with side effects, aging etc.
All I can say is goodonya to Neil, and all the wonderful contributors to this great site, I don't say much here but check in regularly, I would feel very alone if I didn't know you were all out there somewhere going through the same things as me, although I do so wish we didn't haven't to be here😂
Cheers to Nick, Neil, Chris, NewDawn and all the other Admin & Volunteers that support the site.
Despite being one of the newest of the sites for CLL, CLLSA has become the most active and most informative IMO. Great content and excellent user interface.
Like most websites and apps today, constant attention, upgrades and refinements are needed to stay current, otherwise the user expectations will rise and the user interface will become outdated in a few months.
I just want to echo all of the above comments , this site has given me so much in terms of comfort , knowledge and understanding since my diagnoses, thank you Nick and all the regulars xxxx
Love and thanks to all the admin and the regular contributors - I don't always understand everything you post but know it will be there come the sad day when I need it.
The hard work and determination of us all has paid off. WELL DONE EVERYONE
It only seems like yesterday when we were kicking the group off that Chris sent us a message "build it and they will come". Yes bitter sweet that there are now so many of us here, but it is the many that provide the content and activity in supporting each other that drives the sites development . There are many who are no longer alone and the information we provide each other makes a daily difference, your reach is now immense.
I am one of the newer members of this community...each morning I check in with all of you as I drink my morning coffee...I am comforted, educated and challenged by what I read and the photos are incredible ... I truly appreciate your shared challenges and encouragement! To think that this international team has come together all because of AussieNeil...thank you!
No, not me. Nick (HAIRBEAR) and a small group of long serving volunteers started this community in October 2012. I became involved a few months later. It was those earlier volunteers that set the welcoming, supportive and sharing atmosphere for this community that others have appreciated and in turn supported that has made it what it is.
My thanks also to our HU family. Aussie Neil, NewDawn, ygtgo (love your humor Steve!!), Bubnjay, Paula S, Stunned, you all responded quickly when I made my first post, with the emotional support I so desperately needed then, and I remember feeling that I had 'arrived home' and become a member of a very special family. The relief and support I felt was enormous. The emotional rollercoaster ride that cll is for me, is hard to cope with at times, but I always find support here when I need it. You are all very special people - Thankyou
Thanks for all the great info. I had no idea that this site was put together so recently. I stumbled upon it and have learned more from this site than from my medical practitioners!
And I love how supportive everyone is on the site. I don't feel so alone in having this diagnosis. I actually feel a lot calmer about the whole thing knowing all the advances in TX that are happening and hearing from people who have had a dx of CLL for a long time. Very encouraging.
I am slowly learning what all the acronyms mean. It's too much to understand all at once.
Thank you to all the volunteers.
I wish all the best to everyone on this most difficult journey.
Agree with all previous comments. Very new to the group and have found it comforting to have found people who actually know what it's like to have a CLL diagnosis and are a wealth of information and advice too. At a time when I can't sleep, can't eat and seem to be shutting out my lovely family who are trying so hard to keep me upbeat, it's nice to have somewhere to just 'be myself'. Thank you all.!
What you wrote in your post about can't eat/can't sleep etc after diagnosis will ring true to all of us on here.
My most vivid memory, was that my brain went into ' overdrive' mode, especially at night when trying to get to sleep. It slowed down in its own good time.
Your post also contains the most positive of phrases ... my lovely family.
All the thanks above and more to the wonderful people who continue to support, encourage and enlighten us. I knew nothing about CLL when I joined, and have learned loads since then, all of which makes me stronger.
Thanks to everyone who has had a hand in making this site what it is. It is my first port of call each morning. It is a great source of information, but with a human touch - much appreciated!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
). Likewise if you've used the PM system and would like to help others become familiar with the process, just reply to this post, inviting other members to send you a test PM.
Changes I made since diagnosis
Covid-19: What, if anything, can we learn from integrative oncology experts?
