September is Blood Cancer Awareness Month, and throughout the month we are raising awareness of myeloma, its signs and symptoms by sharing patient stories.
To kick the month off Myeloma UK and eight other blood cancer charities got behind the Make Blood Cancer Visible campaign, which aims to raise awareness of blood cancers. The campaign launched with an installation in London’s Paternoster Square that features 104 three dimensional letterform sculptures representing the number of people diagnosed with a blood cancer every day in the UK. It will be on display until 30 September 2017.
Hotel owner and art enthusiast Susie Suter, 48, from Crickhowell in South Wales was diagnosed back in August 2013. Susie originally thought that her pains were sports injuries but after several months of visiting her GP and taking painkillers, she was eventually diagnosed with myeloma.
“Blood tests were taken on a couple of occasions but nothing unusual showed up. It wasn’t until about 8 months after my first appointment that, after a lovely walk in the hills with my husband, my back went into spasm and I went back to the doctor and started making a real fuss. I asked to go and see a back specialist as I thought maybe I had slipped a disc.
“After waiting another 3 weeks I saw the specialist who decided to do a scan just to look at my back as he said I felt a little stiff. What came back from the scans was devastating: many of my vertebrae had tumours and holes on them and I was told that I probably had secondary cancer from an unknown primary.”
The three months that followed involved biopsies, blood tests and visits to many different specialists. The myeloma diagnosis came at the end of this stressful time for Susie, “It was a difficult diagnosis because I did not have the usual myeloma pointers such as paraproteins and I was also quite young for myeloma. Chemo started for me as soon as it was decided what I actually had and it was such a relief to get started on a treatment.”
Susie has also had a stem cell transplant and is currently on maintenance chemotherapy. She still experiences some of the side effects of myeloma but has said that some normality has returned to her life.
With a degree in Art History, Susie was excited to take part in the installation which she described as an emotional experience, “It’s an inspiring piece of work and really very emotive. It’s very humbling to see that so many people are living with Blood Cancers and some of them are so very young too. Having people’s stories attached to the names makes it all so real.”
Susie has also been a big supporter of Myeloma UK over the years and took part in this year’s London Paris Bike Ride. She managed to raise over £26,000 for this event alone and continues to be a big supporter and fundraiser for Myeloma UK.
“The London Paris Bike Ride was an incredible event to take part in. I thought about it for a while and got my husband James and friend Piers involved. I was told I wouldn’t be allowed to ride a bike for a few years, so it was a great achievement to complete the ride and raise money for Myeloma UK.”
Would you like to take on a challenge to help raise money and awareness for Myeloma UK? Visit our Get involved page for some inspiration.