UK CLL Forum, UKCLLFORUM

Making a difference. A patient study and paper revealing some of life with CLL

Topic Made On: Nov 19, 2011 03:16pm
Nick

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Posts: 104
Hi again thought this may be of interest to all. I have posted it under research papers 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?

More direct 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




Replied On: Nov 23, 2011 11:44pm
Nick

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Gender: Male
Posts: 104
Hi ALL

following on from the HERG study available at http://tinyurl.com/boh5hly

"discussing the difficulties of physician-patient communication about a CLL/SLL diagnosis and subsequent challenges during the wait-and-watch vigil.

A short article has just appeared in the Journal of Clinical Oncology, Vol 29, No.33, 20/11/2011, titled "The Sad Smile". The theme is difficulty in doctor-patient communication, in this case considering the doctor, at the critical moment when a cancer diagnosis is pronounced to the patient."

The article is at
http://jco.ascopubs.org/content/29/33/4462.full.pdf

Thiught I would pass on this information added by a patient following my previous post on our difficulties at diagnosis. This is a thought provoking piece.

take care

Nick





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