So I made it! I talked in a recent blog post about there being an event that I wanted to attend, and that I was worried I wouldn’t be able to make it if I wasn’t feeling well, and I made it! So let me tell you about last weekend.

I finally got to meet other people  who also have ACC. Thanks to the amazing patient information day run by AMEND (information below)

Community and shared experience is such a fundamental part of the human experience. We all seek community in one way or another, I mean just look at things like Beatlemania people who follow a sport team, and collectors of various things. We all seek a group to share interests and experiences  with. That’s easier said than done when you’re living with a cancer that is diagnosed in one in one million people worldwide annually.

I have spoken to a handful of people online, who also have ACC but have never actually met anyone with it and that can feel quite lonely at times.  So it was quite a bizarre, and comforting feeling to be in a room full of people who had all got the same experience as myself, who had all had the gruelling  surgery, had the same medication, the same fears and held the same anger towards this truly unfair and frustrating situation.

There was one point throughout the day where we were sat around a table having one of several tea breaks, we are British  after all! Sat there, amongst these other people I found myself thinking how I wasn’t alone, and that everyone sat around this table has a scar just like me, affectionately known in the ACC community as a “shark bite”.

It felt good, I felt understood.

There were workshops throughout the day, an expert speaker, who talked about ACC, treatment and a little about research, this also allowed the group to get to know one another and share their own experiences, hearing peoples stories from diagnosis to surgery to now was emotional, and hard at times, but valuable, the kind of insight I gained  from people who have been there is more than I could ever get from a doctor in many ways.

Second was a session about living with cancer and fatigue. Something that’s very pertinent to my situation. Tired doesn’t even come close to describe how I feel most of the time. The session was about both the impact of fatigue but also little ways that you can manage it, try to improve it for yourself.  There were lots of little tea breaks and a longer lunch break where I was able to talk  a little more to the other people there who had ACC.

That evening a small group of us went out for Thai food and continued sharing our experiences, some much further down the line, some very new to their journey  like me. But all kind, and willing to offer insightful and honest reflections of their time living with this horrible disease. 

So thank you to the organizers of the patient information day,  I came away from it feeling at the very least a little less lonely.

ACC support UK:    https://accsupport.org.uk

AMEND:  https://www.amend.org.uk