This blog is great!!!!

I have only just discovered this blog, and think it is really great. At last I can be part of a community of people who understand what CLL means and have similar challenges, experiences [and fears]. I am in Year 4 of 'watch and wait'. The first year was the hardest, not only in my [and the family's] understanding what was going on but where to find emotional support. I am more than happy with the support from my GP and the hospital clinic. Friends and family have been wonderful by caring but not being over-dramatic. The hardest part has been not having any contact with anyone going through similar experiences. I went to a couple of CLL conferences, but got lost in some of the very technical stuff and didn't need the graphs that looked like the stock market on Black Friday. At one conference a woman stood up at the end and said she was newly diagnosed and felt very scared..... we all knew how she felt and thanked her for speaking out for us. Long may we have this forum to chat, feel reassured and have friends "in the know".

Last edited by

3 Replies

oldestnewest
  • Welcome - can agree with what you say. Nice to see that the medics are now starting to think about Quality of life for those on Watch and Wait. I must admit that I like to see some graphs in talks especially when they tell a positive story. I was lucky to attend a CLLSA meeting soon after diagnosis. Full of good science and lots of support - would recommend going along to a meeting near you - they are full of people on a similar journey and very reassuring that you are not alone.

  • Good to hear from you, Mitzi2. I think lots of us echo your feelings.

  • I live in Cornwall and feel very isolated.

    I am trying to start a Devon/Cornwall support group.

    Went to a CLL meeting In Oxford last March.

    Great to meet lots of people and hear the experts.

    Only problem is nothing doing in the south-west.

    Have asked for meetings in Bristol or Taunton.

You may also like...