Meet & Chat online sessions
On the last Monday of each month our online Meet and Chat opens from 10.00 am until approximately 11.00. I say approximately as we always overrun, so much to share! Our meetings are mainly made up of patients with the occasional caregiver/loved one joining us. Everyone is most welcome and the general atmosphere is one of friendship, support and sharing.
This year we’ve had between 6 and 20 participants, averaging around 12 from all around the UK. Topics covered are wide and varied, we have no agenda or set topics, unless there is something we, as a group, would like to promote or research to share. It is your opportunity to share anything you are going through, good, not so great, exciting, troubling or simply how to live life on life’s terms – nothing is off limits, hopefully we can give each other the support, encouragement and empathy we all need from time to time.
Over the last few months we discussed the following areas:
Other people’s reactions to us as patients and how to respond; “oh but you look so well?” “so you must be in remission now?”, “when does your treatment end” or they simply don’t know what to say and almost ignoring what we are dealing with.
Exercise – what sort, how much, how often – it’s good to hear what others are doing, which ranges widely from climbing mountains to simple walks with the dog, to Qidong to online exercise classes, we’ve tried all sorts.
Variety of treatments – everyone is different, anything from different amounts of TKI medications, chemo; lots of varieties, drug trials, radiotherapy and combinations of all. Plus sharing side effects; and solutions both medicinal and other.
Scanxiety – the very real fear of waiting for a scan, having the scan, then waiting for results, and coping with a “stable” result when our hopes were for reduction, no sign of disease, learning that stable is good in our world. Then doing it all again 3 months later.
Advocacy work – research, projects, raising awareness. Supporting the work our Charity does as well as individual activities through research projects, fundraising activities, participating in external research and patient advocacy.
Details of the zoom login is posted both via the EGFR+ UK Facebook Events Tab as well as generally on our closed Facebook group posts. Everyone is very welcome. We look forward to seeing some of you online on the last Monday of the coming months.
Lizzi B, Trustee & Host