Oxford CLLSA meeting. .... thank you

Just back to my daughter's in Abingdon and while I remember....

Big thank you to all those that helped in organising the meeting, the speakers for clear interesting presentatilons and those other attendees at the meeting. I really enjoyed the day and now sitting in the sun (under shade) enjoying a cuppa reflecting on how good the meeting and dis discussions were.

Rob

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  • Hi I would also like to thank everyone involved in today's meeting. The info we received and the catering were wonderful.

  • My first CLLSA meeting.

    Great to meet everyone, and impressed how well everybody looks, and the level of positive thinking.

    That was a real tonic.

    Need to try to make sense now of my notes - lots of significant points

    Hope you all had a good time in Oxford.

    Many thanks to everyone,

    Ernie

  • Hi Ernie - great to meet you yesterday. Still digesting it all today. Keep well. Shelley

  • My first CLLSA meeting too. I thought very well organised, all talks were great and, as mentioned above, the sense of positivity from us all was very uplifting.

    Many thanks to all who organised

  • Yes, a very professional and well organised meeting.

    This was my first meeting too and I was a bit disappointed not to have met anyone at my stage of the disease. Most people I spoke to were newly diagnosed and on Watch and Wait. It would have been nice to exchange experiences with people who had been on more than one treatment, had P17 deletion, were considering a Trial etc. Perhaps these 'old timers' didn't feel ( mistakenly) they had anything more to learn about CLL or perhaps they were too old or ill to attend.

    Still very much worth coming and I hope to make the next one at Barts.

  • Hi Isambard

    Thanks for your feedback. this is an important observation. it could have been down to chance as tables at this meeting were not pre-groped by preferred topical discussion as this had been successfully tried at the two before. The table I ended up on was a mixed bag of us , another I noticed was mainly veterans,there were several veterans and 17p in the room, we will have to consider a way to allow different groups to connect more easily. Observations/suggestions given to us here will be provided to the Bart's meeting organisers.

  • One minor suggestion from me, personally I like to have an image in my mind of a person when talking on here, what would be useful would be if we had our userids here on the printed badges at the meeting. I wrote mind on by hand, The mere fact it was there started one conversation (a tick in my books). I'll continue to do it anyway.

    Most likely won't be at ST Barts, but hope to be at Edinburgh.

    Rob

  • 3rd december

  • Invitations should go out in the next few days

  • A good meeting with a good turn out. I would have said unusual that 50% attending were first timers. There were several attending who had been through treatment - not always easy to tell when in remission often more energetic that those on W&W!!

    Thanks to all who offered help with web - will be intouch

  • Would someone like to provide some feedback on the meeting. I have been to 2 meetings at Southampton, 2011 and July this year and provided feedback on the MacMillan forum (and probably should have done so here also!).

    Thanks

  • Hello Mikey and all, rested and replenished after a very good CLLSA members Oxford meeting and travel home to Wales in the evening after a few follow up meetings I am pleased to provide you with a little Update. Although not yet advertised get your names down for the next at St Bartholomew's London on December 3rd as places do go so quickly, email Sarah Tobin at; membership@cllsupport.org.uk these are free meetings for CLL Support Association members which is also free (make sure you are registered CLLSA at the same time either with Sarah or on-line here : cllsupport.org.uk/php_files... ) The first two meetings next year will been in Edinburgh in early spring and Cambridge in June.

    Thanks everyone who was able to attend and enrich the meeting.It was a very well attended meeting and again a privilege to hook up with many from on here and share thoughts etc.

    A report of the meeting is being prepared by a community member from here allowing them to share their experience and perspective. this will be posted by them a little later in the week. Of course several of us will be able to add any key aspects of information that may be beneficial for those unable to attend.

    Mikey thank you for your report posted to the Macmillan forum , As agreed I have written a report and your feedback has been a great help, this will inform others who could not attend Southampton. This is going out in the newsletter and our Association website any moment should be updated (sorry for delay,) I will post it here, please then add your observations and experience too..We did receive further clarification from Dr Anna Schuh yesterday on vaccination requirements and guidance which differ from those recommended by Southampton primarily because of lack of hard evidence available- I will explain in the relevant thread here.

    Mikey thanks for keeping us posted on your treatment Journey too.

    Again iIt was great to meet so many us on-liners, drop in and share your experiences in this thread if you can.

    Nick

  • Although I had tickets, I was unable to attend as I was too unwell, so I shall await the report with interest. Thanks to those who are giving up their time to put it together.

  • Nick, i thought least one person including Arthur said "March meeting in Edinburgh" yesterday. Your comment says Exeter. Both places on my list of 'places to see/visit/explore' but just to double check, Exeter or Edinburgh?

    Rob

    (Maybe I just misheard it)

  • Ooops yest Exeter was discussed by CLLSA for later next year Appologies for mistake (and leak). The first CLLSA meeting next year is Edinburgh, will edit my first post post.

    thanks for being on the ball

    Nick

  • Edinburgh research first then :-)

  • I would be very interested to attend the meeting in Edinburgh, could you please let me know when you have further information.

    Thanks.

  • Hi olyocl good to hear from you, maybe now we get to meet?

    As soon as we can confirm the details they will be posted.

    Nick

  • Hi Olyocl,

    I've received notifications automatically in the past, guess same thing will happen for Edinburgh.

    rob

  • Hmm sounds like it was a good meeting.

    Unfortunately I couldn't make this one as I don't have enough leave left, yes I am lucky enough to be on W&W and still working. Sounds like it was interesting and productive.

    From a personal viewpoint I wouldn't like to be herded into groups in future meetings, I think it is better to turn up and mingle amongst each other, we had plenty of opportunity to m,ix and chat at Southampton and if you felt the need to speak to others in a similar situation to yourself you could move tables and join in.

    Keep it free and pen for me, just my viewpoint of course.

    Hope to make the next meeting.

    Kirk

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