How are KCSN Facebook groups different from other kidney cancer groups?
It is very important to us that when you join one of the Kidney Cancer Support Network (KCSN) Facebook groups, you know you are amongst friends.
Sarah Yule, an early member of the KCSN and a patient herself, had the idea to provide a safe place on Facebook for patients to share their experiences with each other. Our Facebook groups are managed by the patients themselves, or by someone caring for a patient; you will be joining a very special community of over 500 patients and carers who truly understand what it is like trying to cope with the emotional and physical effects of kidney cancer. Every member of our Facebook groups has had his or her life changed by kidney cancer. We know the fear and confusion that a diagnosis of kidney cancer brings with it, and we are here to help.
When you strike up a conversation with someone else in the KCSN, whether it is a post on Facebook, or an email or a call to our helpline, or perhaps as part of one of our organised get-togethers that take place around the country, you know you are connecting with other patients and carers who all know exactly what you are going through and can offer you support, information and a very special type of friendship.
Our main Facebook group is called the “UK Kidney Cancer Support Network”
This is a closed group; we restrict who joins the group to kidney cancer patients, carers and immediate family members, allowing you to talk openly and freely, and in complete confidence. We know that sometimes patients don’t feel able to talk freely to their families or their friends because they don’t want to cause additional worry. So being able to discuss emotional issues amongst other patients who feel the same way is a tremendous relief. It is a safe and secure place where you can talk in complete confidence to other group members, or to our admin team. Nobody else can see or read your posts.
Our KCSN community is a place where you can ask questions only another patient will be able to answer. You need never feel alone when you belong to the KCSN; you can usually find someone there to talk with, even in the early hours of the morning. We believe passionately that by sharing our experiences and offering mutual support to each other, we can make dealing with this awful disease a little more bearable.
The KCSN is a great community to be part of; as we say when we welcome a new patient or carer into the network:
“Welcome into the group no-one wants to belong to, but we are glad you found us because we are here for each other”