Calling all CLLrs in Ireland

[KateEvaLen]

Hi to all. If you are, or could be, in Dublin, Ireland on Friday 18th November, perhaps you might consider supporting a really good cause - CLLIreland. We are planning a fundraising Table Quiz in Na Fianna GAA Club Mobhi Rd Dublin 9 at 8pm in aid of our fledgling Blood Cancer charity. This is our first fundraising event and we could do with lots of support. All proceeds will go to the first ever national CLL Public Information Day planned for March 2017. A fun night is promised. we have an amazing quizmaster and a great mix of table quiz questions. Music and spot prizes are also planned and of course we will have a bar in place! It is only €10 per team member and we need four for each table. So please do come along. Or even better, bring a team of four. If you cannot attend, perhaps you could donate a spot prize? Everything is welcomed! Do let us know if you can help us.

[Donegal]

Hi Kate - delighted to hear that you're getting a CLL association off the ground here in Ireland. Well done. Unfortunately I won't be able to travel as I've been in hospital recently with a virus and neutrapoenia and am still pretty weak but please keep me posted. I have heard of someone else in Maynooth and will try to contact her. I attended the CLL support conference in Glasgow in September which was really good.

Good luck with the quizz. How could I send a spot prize?

Deenie

[KateEvaLen in reply to Donegal]

Hi Deenie

Thank you so much for replying. We are such a small group here in Ireland, we really need to band together and support each other. I'm so sorry to hear you haven't been well and are still under the weather but hopefully you are on the road to recovery.

Don't worry about missing the quiz night. The most important date for you will be the March national public information day, which hopefully you will be well enough to attend. From attending the Glasgow event, are there any hints we could learn from - good ideas/ things that didn't work in Glasgow/ things that could be added? Doesn't matter how basic - it will help us get it right for Ireland's first national information day, and will be so welcome. I'll send you detail towards end December re our plans.

Please do let your Maynooth CLLrs know. He/ she might be able to come.

Re Spot Prize: I have contacts in the library service who might be in Dublin over the next week or so. are you close to or use a Library in Donegal? If you let me know, I'll contact the County Librarian Eileen Burgess and see if she can help.

You've lifted our small group's spirits just by posting a reply. Looking forward to meeing you in the not too distant future Deenie.

[Donegal in reply to KateEvaLen]

Hi Kate

You certainly had a bad time earlier this year too. I'm just totally creamcrackered and steamrollered at the moment!!

I could send you a book token for a prize and also the agenda and notes from Glasgow if you like.

Regards. Deenie

[KateEvaLen in reply to Donegal]

Hi Deenie

FCR is hard - there is no two ways around it! I guess some people are fortunate but not me with regard to treatment! Here I am, after 16 transfusions, and still would serious blood issues! I'm still neutropenic but hoping that my bloods have stabilised at last. However, I am grateful for remission and the return of close to normal energy levels. I'll certainly need them to help us get CLLIreland up and running. We are a very small group as yet so all the help that's forthcoming is very welcome.

We really do need spot prizes! <email address removed by admin>. I could give you my postal address and you could post the voucher. We will be taking photos at the Table Quiz night, including of all winners! All this should appear on our website when it is up and running. But our focus is getting the March meeting planned and delivered.

The agenda of the Glasgow meeting would be great, so please do send it to me via email. Even better, would be your take on highlights and what, perhaps was missed or could be done better. We want to make the Irish event as worthwhile as possible for all CLL patients here and their carers.

[AussieNeil Administrator in reply to KateEvaLen]

Hi Kate,

I've deleted your email address for your protection. You've left your post open for anyone to find via an Internet search engine like Google (appropriate for a call to Irish CLLers). The downside of this is that you could get your email address added to spam mail lists and be sent malware attachments, etc. Please use the Private Messaging facility for the exchange of private information; that's what it's for!

support.healthunlocked.com/...

[KateEvaLen in reply to AussieNeil]

Thank you! Much appreciated Neil.

[Lyra]

Count me in! I'm not sure if I can get anyone to come with me but I will come after work if I'm allowed squeeze onto a table ☺

[KateEvaLen in reply to Lyra]

That will be fantastic. We can finally meet. We will get you onto a table no problem at all. See you then and thanks for the support.

[Lyra]

I didn't see the other replies when I posted mine. Deenie - I hope you feel stronger v soon. And Kate - hope you aren't too exhausted from all of this organising. It'll be lovely to put faces to the names ☺

[KateEvaLen in reply to Lyra]

Definitely. It will be so important to get a strong community of CLLrs here in Ireland supporting each other on this journey of ours and making sure that we are doing all we can to support the medics in getting new treatments available for us here in ireland.

[veroincawithers1953]

Hello Kate.

Thank you very much for the great work you are doing to get our own association set up, despite the tough times you have had to endure. I am very interested, though my husband will not be able to go. He has had a similar experience to you, and thankfully he is now stable and back at work, in a sterile environment, luckily (pharma production). He us safer in work than anywhere else! He cannot go to events indoors where there are lots of people though. So I will check and see if anyone I know can come along. If I cannot get someone I probably won't make it. In that case I would like to give a donation. So if I do manage to get there I look forward to meeting you and other CLLers which I never dreamed would be possible only six months ago. Is here the best place to let you know about a donation if I cannot attend?

Vx

[KateEvaLen in reply to veroincawithers1953]

Veronica, thank you so much for your reply. It is good to know that you are interested in an Irish CLL Support and Advocacy Group and see the crying need for it. Your reply lifts me personally and also lifts our small Group and gives us the knowledge that we are on the right track. It would be lovely if you can make it to the quiz night and do make yourself known to us if you come along. You will be so welcome. But don't worry if you cannot make it as the most important date is the date of our Public Information Day, Saturday 11th March 2017! Put it in your diary today. Hopefully you and your husband can both come along to that event which will be a first national day for CLL patients and carers. Don't worry about a donation as yet! We hope to have an online system in place by Christmas for donations. However, the most important thing is the establishing of links with CLL patients and carers across the country. We are working hard to put a great line up of speakers together for March. We also hope to ensure that there is plenty of time for everyone to talk and meet each other. I'm sure that you will not only enjoy our March event, but establish links and learn more about this disease of ours. If you do make it to the quiz, I look forward to meeting you on the night.

[veroincawithers1953 in reply to KateEvaLen]

All the best Kate and all going well I will see you on the 18th

😊

[KateEvaLen in reply to veroincawithers1953]

Hope you can make it Veronica. Looking forward to it. Hoping the Quiz night is a massive success!

[veroincawithers1953 in reply to KateEvaLen]

I will see you later Kate. I I think I have managed to get two teams of four. I hope to be there by 7.45.

Vx

[KateEvaLen in reply to veroincawithers1953]

Thats fantastic! Looking forward to meeing you veronica. Safe journey.

[Emerfly]

Hi KateEvaLen , I am a newcomer to CLL and wonder if you have succeeded in setting up a support group ? I live in Dublin. Kind regards. Emer

[Jimmy789]

Guess I'm two years to late