The Ann Edgar Charitable Trust (aect) charity offers a support network to people with nets, carcinoid syndrome and their families and friends in Scotland. The charity works independently as well as working in association with UK charity – Net Patient Foundation.
As part of the support services. Folk affected by nets & carcinoid syndrome get together – informally and socially. We chat, share experiences and very often laugh loudly. Gives a chance to air our views, meet new people and strike up friendships.
Yesterday was my hubby’s 49th birthday. There was a meeting arranged for the same day. I asked Steve if he wanted to go to meeting or give it a miss since it was his birthday. Not everyone’s idea of a perfect birthday night – spending time with people talking about injections, bowel habits, surgery etc. Steve being Steve wanted us to go. So we went out for dinner one our own and then headed to meet the others.
When we arrived at the pub the others were sitting at a large table in the bustling pub blethering away. As usual a warm hello from everyone. The pub setting is and ideal location. Far away from hospitals; this non clinical setting Allows you to drop your guard and open up. You find yourself sharing and telling of what has gone on since we last met up. While friends and family can be a lifeline offering support and help sometimes I find myself halting and not actually saying how I really feel or how things have been. The group has a very relaxed atmosphere and when you share an experience you do know others know how it really is. Nothing helps better to lift the weight when someone says to you, yes I understand or I know how you feel.
Last night was the first meeting since Anne passed away. I was feeling apprehensive. It was anne that would tuck a label in whenever it was showing, grab my cheek softly with her index finger and thumb and ask how I am. Anne was such a loving friendly lady who had time for everyone. Her smile, kind words and sense of humour is what I will miss most.
Five minutes in and the knot in my tummy had subsided. Sitting on the table was a large cake box. Barbara, one of the members had baked a cake for Steve’s birthday. Everyone was chatting away, talking about all sorts. While we do share health experiences, we do actually talk about our everyday lives, our families, etc. as well as football, golf, TV, holidays, and much more. We had a newbie and her husband last night. I’m sure she got a lot out of it and will be back.
An hour and a half in and we all shared Steve’s cake. Barbara is a wonderful baker and the cake was delicious. Conversations were flowing and everyone appeared to be relaxed and at ease in chatting. The great benefit of the group is there is no cliquieness. I’m sure even though it was a first social meeting for two of the people there they felt welcome with no awkwardness and able to talk freely. As a group there are never hard and fast rules. There is no fixed agenda or timings. You can stay for as long as you want or have the time. No one would take offence if you came for half an hour and left or if you stayed for the duration of the evening.
We arrived at the pub at 7.40pm and left at 10.30pm. On the way home in the car, Steve and I chatted about our personal feelings of the evening. The half hour journey home flew in : probably due to the pair of us nattering. Usually I am tucked up in bed by this time. I guess going out and meeting the others had me wrapped up in conversation and even gave me positive energy.
To think I was sceptical of going to meetings. Worried they would be unwelcoming and regimental with rules and a set schedule. I shouldn’t have been doubtful in the least. I’m looking forward to our next hook up.