Maggie's

See what's happening in the Community

You are not logged in.   Log In

Blogs

What is a blog?

A blog is an online journal. Read other member's blogs or start one of your own and share your thoughts.

Find A Blog

Read our blogs and post your own comments

Meet the team

As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

Psychologists and experts from other Maggie's Centres and partner organisations also facilitate some group and individual sessions.

Personal Blog

Selected Blog

CLL Life

by Anonymous

19 November 2011 at 15:26

Making a difference, a CLL paper

Hi again thought this may be of interest to all CLLs. I have posted it under group information to. But feel this is of general interest. congratulations to patients and carers who came forward and took part.

This is written in English, not "medi Speak", If you steer away from reading published papers. Try to read this one, you may even wish to print it out for others. it's lengthy but there is a lot of patient input and identification of issues we all experiance from day to day.

It seems all stages of living with CLL can be an emotional rollercoaster. Any information that helps us, those that support us and the medical profession understand what we are going through is important in my book. Maybe In time it may help us and our loved ones gain a little more Psychological support, understanding and compassion when we need it? 

Links to the paper.

The Health Experiences Research Group, website: http://www.herg.org.uk/

The PDF download of the complete paper.


Incurable, invisible and inconclusive: watchful waiting for chronic lymphocytic leukaemia and implications for doctor-patient communication.

http://www.herg.org.uk/publications/2011/incurable-invisible-and-inconclusive-a-qualitative-study-of-watchful-waiting-for-c

or
http://tinyurl.com/c2drtol

Nick



Tagged with: Living with CLL


Registered Office: Maggie's, The Stables, Western General Hospital, Crewe Road, Edinburgh EH4 2XU   Registered Charity Number: SC024414
The Maggie Keswick Jencks Cancer Caring Centres Trust is a company limited by guarantee   Company Number: SC162451