Meet Steve, our Support Group Leader in the West Midlands.
Having experienced first-hand the difference a supportive community can make after a WM diagnosis, Steve is now keen to make sure others can find that same sense of connection and support.
We asked him about his WM journey, what inspired him to become a Support Group Leader and what he hopes to bring to the group.
What has your WM journey looked like?
I was diagnosed back in 2021 – during the height of COVID and the lockdowns which came with it. It was all very fast for me, I had my official diagnosis on a Friday afternoon and the next Monday I started treatment – Bendamustine and Rituximab in my case.
It worked well, and within just a few months, I went from barely being able to go out for a walk, to living a relatively normal life (including keeping down a full time job). Now, five years on, I’m still doing well and I keep my fingers crossed that continues to be the case.
What helped you most in the early days after learning you had WM?
Two things in a nutshell! Firstly a great consultant in Dr Neil Phillips, at Royal Stoke, who has a special interest in WM and gave me great care and support.
Secondly, WMUK. I attended the 2021 conference online and quickly went from having never heard of WM to be fairly knowledgeable. Add to that, the online support groups – I joined two – the Midlands and also the North West – and it not only gave me great support but also empowered me.
To be able to speak with others in a similar situation to me was invaluable (remembering also that there were no in-person meetings back in those COVID days).
What inspired you to become a Support Group Leader?
That’s a very easy one to answer! It’s the support I received from being a part of a group when first diagnosed and right up to present. I know, first hand, how valuable the groups can be, and I want to strive to ensure that they successfully continue, well into the future.
What would you like to bring to the Support Group as the leader?
Enthusiasm, ideas and maybe a bit of a refreshment. But mainly a listening ear, a sense of community, and a culture where we each help and advocate for each other.
What is your message to the Support Group?
If you’ve never attended a group, or haven’t for a while, I would love for you to try us again. Together, we can shape the group so that the meetings reflect exactly what fellow WMers in the Midlands want it to be.
We can build a great and supportive community and I would love as many as possible to be involved. Give it a try! Our next meeting will be in early December, via Zoom.
Where is your favourite place to be?
Wherever the family is. That’s where the love is, that’s where the support is. That’s where I’m the most happy. It could be anywhere, but, so long as we’re all together, then it’s all good!
If you had a theme song for your Support Group sessions, what would it be?
It would be ‘Rise Up’ by Andra Day. It’s a beautiful, powerful and soulful track about moving forward in the face of adversity – and seems very appropriate in the case of WM
And we’ll rise up
High like the waves
We’ll rise up
In spite of the ache
We’ll rise up
And we’ll do it a thousand times again
We have Support Groups across the country that meet in person and online to share experience and offer encouragement.
Find a Support Group near you.