Sharing your stories does help others, the heterogeneous nature of CLL means we are likely to experience our own version of the disease and will handle it in our own way. But I remember when first reading other's experiences how much these helped me.
This year Christmas feels whole for me for the first time in many years, My kids are still young enough to feel it's magic it seems to have rubbed off on me. I wish the very best for you all during the holidays. Hoping that you are able to enjoy the family festivities to some degree and this occupies the greatest part of your minds allowing thoughts of CLL to melt away for a while
Thank you all for sharing your experiences, keep them coming. In the meantime I have posted Healthtalkonline patient experiences that may be useful for those looking for further stories during the break. These may prompt you to share some of your own.
Wishing you the season's best.
Nick
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The Healthtalkonline website uses video snippets of patient experiences to support information. An interesting project to help others relate to what they may experience. I have provided links to a few of the leukaemia sections. Much is about CLL always check what you are reading. is relevant..
Patient experiences, Symptoms and diagnosis: Reactions to the diagnosis: healthtalkonline.org/Cancer...
Patient experiences, Symptoms and diagnosis: Telling others about the diagnosis: healthtalkonline.org/Cancer...
Patient experiences, Symptoms and diagnosis: Other people’s reactions to the diagnosis: healthtalkonline.org/Cancer...
Patients experiences, Symptoms and diagnosis: living with the symptoms of CLL: healthtalkonline.org/Cancer...
Patients experiences, Symptoms and diagnosis: Watch and wait: healthtalkonline.org/Cancer...
Full list of topics accompanied by patients sharing experiences.
• Symptoms and diagnosis :
What is leukaemia?
Symptoms of leukaemia
Getting a diagnosis of leukaemia
Reactions to the diagnosis
Telling others about the diagnosis
Other people’s reactions to the diagnosis
Watch and wait
Living with the symptoms of CLL
• Tests and treatments :
Leukaemia tests and investigations
Chemotherapy and how it is given
Central lines
Intensive chemotherapy
Being in hospital
Stem cell or bone marrow transplants
Radiotherapy
Biological therapies
Supportive treatments
Unwanted effects of treatment
Hair loss and body image
Infections and other treatment complications
Treatment-induced infertility
• Living with it :
Remission and recovery from treatment
Recurrence or relapse
Complementary approaches and lifestyle changes
Work and daily life
Self-image, sex and relationships
Support from a spouse or partner
Other sources of support
Coping with young children during leukaemia
Finances
• healthtalkonline.org/Cancer...
Thiese experiences led to the recent UK paper by The Health Experiences Research Group at the University of Oxford.
INCURABLE, INVISIBLE AND INCONCLUSIVE: A QUALITATIVE STUDY OF WATCHFUL WAITING FOR CHRONIC LYMPHOCYTIC LEUKAEMIA AND IMPLICATIONS FOR DOCTOR-PATIENT COMMUNICATION.
herg.org.uk/publications/20...
The paper although lengthy is well worth the read to learn of other’s experiences and findings that may resonate with your own. In time we hope that the findings and recommendations reached by the researchers help with raising awareness of our plight and how clinical care can be improved to help us.
Aussies, please consider enrolling in this study into the personal impact of CLL and help our world wide CLL/SLL community
Combination therapy for our CLL
