Vicky has been living with WM for 12 years, managing the disease without going on treatment. However, when her most recent blood tests showed a change in her disease, her world turned upside down.
“I saw my sister go through chemotherapy, and the prospect scared me,” she explains. “Having supported my sister and being a carer to my two elderly parents, I have always been able to advocate for my own care. But when I got the call about my blood tests and my scan, I lost all my confidence. ‘This is it,’ I thought. ‘I’m going to die.’
“Fortunately, Bob was there for me.”
Bob Perry is WMUK’s Patient Support Manager. A WM patient himself, Bob is there for anyone affected by the disease – patient, family member or friend. Anyone can call or email him to get a listening and supportive ear.
“By the time I emailed Bob, I was panicking,” Vicky says. “I was imagining all the horrible things that the scan might have shown, and how I was going to tell my two children – 19 and 21 – that I was going to die. I really wasn’t at all my usual level-headed self.
“Bob emailed me back right away, and asked whether I’d like to speak directly to him. He called me as soon as I shared my phone number and we talked for 45 minutes.”
Vicky isn’t alone in this. Callers to the charity sometimes spend as much as an hour talking things through with Bob, trying to get clarity about their situation and finding peace of mind in talking with someone who truly understands what they’ve been through.
“He grounded me, and it was like this dark cloud that was hanging over me just floated away. We talked through my fears about going on treatment, and Bob was able to share his own experience of chemotherapy – so different to my sister’s – which was really reassuring. We also talked about the best case scenario, which I hadn’t even considered.
“After speaking with Bob, I actually slept that night and instead of going into my appointment anxious and scattered, I was rational and confident.”
This phone service is a crucial part of WMUK’s work in supporting the WM community, but Bob is just one person. Next year, we’re aiming to launch the WMUK Support Line – a phone line for the WM community staffed by a healthcare professional with expertise in WM.
“For me, a fully staffed Support Line would be a safety net,” Vicky says. “Imagine having a medical professional you can call, who can spend time with you before you go to your appointment and empower you to ask your consultant the right questions about your diagnosis or treatment, whilst giving you personal support when things feel rough.”
The WMUK Support Line would act as a complementary support to your healthcare team, able to spend however long you need talking through things like results, claiming benefits, clinical trials or treatment options.
We want to get the Support Line up and running as soon as possible. Which is why we’re launching Walk for Waldenstrom’s – a fundraising event you can do from home. Challenge yourself to walk a distance and route of your choosing, and ask friends and family to sponsor you, to raise funds for the WMUK Support Line.
“The WMUK Support Line would not just empower me but give me hope in my darkest moments, and I’m sure it would do the same for so many other patients and their families,” Vicky says. “That’s why I’m walking for Waldenstrom’s.”
Vicky asked for a second opinion with a WM specialist who could advise on clinical trials. With a WM expert clinician’s input, they decided it was best for her to remain on active monitoring.
“I’m so glad I spoke to Bob. If I hadn’t, I’m not sure I would have been thinking clearly enough to ask for a second opinion and might have ended up going on treatment perhaps unnecessarily.
“Calling WMUK and speaking to Bob really made all the difference.”
Join Walk for Waldenstrom’s and help us create the UK’s first Waldenstrom’s macroglobulinaemia Support Line to help more people like Vicky.
Need a listening ear? Call us today: 0300 303 5870
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