New Video Series: CLL patients and Carers share their own story

New Video Series: CLL patients and Carers share their own story

10/12/2014 The video series of Patient/carer personal stories continues with more insights from friends and members Jan, Chonette, Andy and Nick.

This is a series of brief videos from friends and CLLSA members living with CLL; their own stories, insights and lessons.

Nick's Story: CLL diagnosis; impact and challenges for the family, and talking to his children

Nick shares with us: How he was diagnosed How hard it was to adjust to that diagnosis, How he gained information to help to do this, What this meant for his family, How he discussed this with his children, How others with CLL in support groups; in person and on-line gave him insights that made a difference, How the family lives with diagnosis and the impact of this on them, The support they have given him and the guilt.

Jan's Story: CLL diagnosis, treatment & family, gaining information and meeting others with CLL

Jan shares with us: How her CLL diagnosis has altered her life, How the support of her family helped her through treatment, How joining CLLSA and meeting people in person and on-line who "get it" has been a great help, How family can help people learn to use the internet. Jan also wishes for improved access to specialists.

Chonette's story: CLL diagnosis, changing plans, treatment, the forming of CLLSA and reaching others

Chonette shares with us: How diagnosis 12 years ago changed her plans, How the internet brought her together with a small group of UK people with CLL in 2005 to start the CLL support Association; To help people find reliable information and meet others, How ten years on Chonette remains in full remission following treatment with a transplant five years ago and the CLLSA has grown to what it is now and how others can become involved with CLL Support

Andy's Story: CLL Diagnosis, his challenges of understanding and living on watch and wait.

Andy shares with us: What led to his CLL diagnosis, how he received the news, the conflicting message, how this impacted on Andy, his challenges living with symptoms while on watch and wait, understanding the concept, how it took time to be "reasonably comfortable" living with CLL & watch and wait and how if more information was made available to him earlier on it would have helped.

Earlier releases

Brian's Story: A Husband and Wife's CLL Diagnosis, Understanding and Coping Together

Brian shares with us: how he learned of and reacted to his wife's diagnosis, how that affected him, what he understood and how they discovered what this meant. how they both gained their knowledge to put things in context, how learning and information networks were key, how on-line resources countered some of the isolation while they supported each other.

Julia's Story: From CLL Diagnosis To A Doctorate Study Of How CLL People Use The Internet.

Julia shares with us: her experience of CLL diagnosis, first questions, the general doctor’s knowledge, how being selective when sourcing information is important, Julia discusses the importance of relationships and working together with her doctors, and following what's happening in the community. How this all lead to Julia’s interest into how people use on-line communities and information resources to support and inform each other, That not all have access, are able or confident using the internet and there is a large older group of CLL patients we don't know much about.

Derek's Story: His CLL Diagnosis, 'Watch & Wait', Involving Others, Hopes and Activities

Derek shares with us: how he felt when he was diagnosed with CLL and his journey since then ,how he copes living with 'watch and wait' and involving family, friends and doctors, his hopes for the future and his activities that keep him busy.

Arthur's Story: His CLL Diagnosis, Challenges, Treatments and Future Hope.

Arthur tells us how he felt to be diagnosed with CLL, How this and CLL has challenged him, where he is now in his CLL treatment journey and what his hopes are for his coming years.

Celeste's Story: Living With CLL, Treatment & Trials, CLL Information & Support in Spain

Celeste shares with us: her insights if you are considering a clinical trial, how very few CLL information and support resources are available in Spain for a CLL patient and their family, how as an English speaker, on-line information and support resources have been a lifeline to aid her navigate and learn about CLL, what clinical trials and new treatments are available and how important her family has been in supporting her navigation.

How Derek Became Involved In Supporting Others With CLL

Derek shares with us how he became involved with CLLSA: how meeting people with CLL at CLLSA meetings encouraged him to become involved with CLLSA as a trustee to increase resources, Derek outlines the types of fundraisers CLLSA are involved in and how members and the public are needed, how important it is to raise the profile of CLL, how this year there have been some great fundraisers that have generously raised funds to support CLL, If you wish to become involved you can contact Derek through the website: cllsupport.org.uk

Picture above CLLSA fundraisers on Everest

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2 Replies

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  • Videos of patients & carers experience - wonderful idea - thank you

    Need to ask - photo ? please tell us more

  • These are great! The patient's and carer's perspective are always so important and insightful. Thank you for sharing.

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