CLLSA appeal and some ramblings

Topic Made On: Nov 02, 2011 04:21pm

Gender: Male
Posts: 104
Hi all, Robert I hope this is OK?

The Chronic Lymphocytic Leukaemia Support Association (CLLSA) is a charity formed in August 2005 by a group of four CLL patients who initially made contact through international CLL groups on the Internet.
The association has grown and achieved much. The main aim of the CLLSA is to provide help and support for patients with CLL (and similar related conditions) and their carers.

We provide:
• A website
• A unique contact list of consultants in the UK who specialise in CLL
• Latest news and developments on CLL
• Regular patient meetings
• Information leaflets
• Newsletters
• Patient conferences with expert speakers on CLL
• Liaison with NICE on CLL matters
• Fundraising

We are appealing for Trustees and volunteers
In accordance with the wishes of the present Trustees we are asking for more volunteers for the posts of trustees. Applicants should be of a mature outlook. Trustees are required to attend up to 4 trustee meetings per year, and support the organisation with its work. These are voluntary positions and only legitimate expenses with receipts are reimbursed. If you are selected for interview then your expenses for travel would be reimbursed. Due to the fact that the volume of work is conducted by e-mail, you must have easy access to a computer, be able to use a word processing program and send e-mails.

Please respond by sending an application of no more than 300 words giving your reasons for wishing to become a trustee and what strengths you would bring to the role.

Send your applications for the attention of The Trustees PA

Training: We will support and encourage you to enrol and attend accredited cancer support courses that will assist in yourself development and to work together with us and the community. Details of what is available on-line or in your area can be provided upon application. In house training is an ongoing process.


Are You a Good Listener? We have spaces on a FREE one day Macmillan cancer support, listening and responding course, organised for CLLers. For those in easy reach of the M4 corridor, on the 15th of December. Alternatively there are spaces on other regional Macmillan listening courses, details can be provided on request. Or sourced directly with the Macmillan learning zone at:

Most of us have been helped by having someone to talk too at some time of our lives. We were grateful for the support and comfort their listening has provided. Now we need people in the CLLSA who are willing to become volunteer listeners; people with CLL or their carers who understand some of the special problems that we have.

If you think that you can help, let us know with contact details and a sentence or two about why you feel that your background would help you to be a listener. We can then talk to you about enrolment.

This free workshop will help you to identify the differences between listening and other helping strategies such as providing information and advice as well as developing and practising your listening and responding skills in a supportive environment.

How do I find out more?

You can contact us by Email at

Or by the Post Office to:
Trustees PA
CLL Support Association
c/o 39/40 Eagle Street

Replied On: Nov 02, 2011 10:23pm

Gender: Male
Posts: 104
After two years I am still very new to things, but do sometimes imagine or recognise that look or feeling of oh “it’s him again”, when visiting the doc. When you want to know why, how, what, if and when something could be done. A human answer in understandable English would go some way in addressing you as a person. Perhaps Doctors find the need to distance themselves with “doctor speak”, without realising that often you leave more confused, more frustrated, more alone and more frightened with your feelings. Or perhaps doctors don’t consider how shut out of our own life decisions we are when “Doctor speak” is used we try hard not to put their “noses out”, but it’s inevitable when you wish to question or have a role in decisions.

I was given some words today that have struck a chord. That remind me of our need to be able to form things correctly in our own minds. That often a simple explanation by a doctor would prevent us being blinded by big words and terms. We enter consultation with many thoughts and questions listed, but end up leaving without being able to raise them. Or if they are answered we just don’t understand the answers. Carers and patients are often left themselves to pick up the pieces of these days.

This has allowed me to reflect on how important it is to keep things real how we people live with this disease and have to cope with the myriad of day to day issues it throws up for us. Before diagnosis I wonder how many of us knew what CLL was. It was such a shock to find out at diagnosis how such little time is provided to help us cope and understand what this all means for us. It was so refreshing to find a place here where people can be real and are able to share what’s on their mind.

Finding others in the same boat who shared their trials and tribulations brought me back to ground. It has been the community and not the health provider that has pointed me where to find information about the disease and CLL life. Frankly in the beginning I felt more alienated, misunderstood and alone with each visit to the GP or specialist. Now after adjustments, learning the alien language and the “system”, I fair better. But I am no longer alone anymore.

I am in Wales (fairly out there), but have the fortune of being close to University Hospital Wales who are world leaders in CLL research and treatment. But remain isolated without the internet and CLL support. My frustrations at not being able to find others or many UK sites did cause me to start new online groups, one at Macmillan and one at Maggie’s on line communities, places easy for people to find as they join our numbers following diagnosis. From there with a little shared understanding and compassion people can find the places like here to expand their horizons while sharing time with others who do understand. Likewise I joined the CLLSA to access facilities they provide, primarily to be able to attend patient meetings and lectures, so have recently stepped up to the plate and joined the management team to help develop and continue these for us. Much of the CLLSA site may not be easy to understand, we do supplement by providing information booklets using less terminology and jargon. We are to improve this and update our sources of further information for readers. Part of the reason for the appeal for trustees and volunteers, is to source potential candidates that may wish to contribute to CLL support their abilities, in a way that may suit their capability and the experience they may bring with them. The CLLSA website does not have an interactive forum for members, so I am looking forward to continuing to be a part of this space here with you all. Thank you for all for being here.


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