Upgrades to the CLL Canada Bulletin and Website
Changes are afoot in CLL Canada’s online presence. We have created a new format for our bulletin, which you are now reading. Our website has been updated and is being translated into French.
Ten years after the launch of our first eBulletin, we are pleased to announce a new format for the renamed “CLL Canada Bulletin”. From here on in, subscribers will be receiving emails every two months in the format you are currently reading. Two articles will be summarized in each issue, with a link to the full article on our website. Gone are the pdf attachments, the multiple articles and the “e” prefix of the Bulletin.
Those of you who visit our website will also see some changes that are being implemented as this message is sent. The treatment access page has been revised and updated. The bulletin page will soon have a new look, making access to individual articles much easier. We are translating our website in Canada’s other official language; French pages will be appearing soon. Also in the pipeline are new links in our CLL Information and Resource Centre.
These changes are in keeping with our mission to inform, educate and advocate for people with CLL and their care partners. The more a patient knows about their CLL, the better they are able to live well with the disease.
One does not have to study medicine to become well informed about CLL’s symptoms, how to manage them and what they tell us about the evolution of the disease.
When it comes time for treatment, we are now asked for our opinion. Fixed duration or continuous? Which continuous therapy to choose? While the opinion of our doctor is very important, there are non-medical aspects to these choices, for instance, do we want to be on a pill for the rest of our life?
A patient living far from a hospital may prefer a treatment that does not require travelling long distances to get infusions or the “ramp up” time required for specific treatments.
Having CLL can make us feel we have lost control of our lives; that our existence can suddenly be thrown into turmoil. Being informed is a way to get back a measure of control over our lives. When we know what is happening and why, we are better able to participate in making decisions about our care.