Julie Waines knew something was wrong with her health when she started falling asleep at work and had to spend her lunch breaks taking a nap in her car.
But the 65-year-old data processor, who works for Northern Powergrid in Stockton on Tees, had never heard of Multiple Myeloma and when, after a series of tests, she was told she had the condition she had no idea of its seriousness.
Now Julie, who has undergone more than 12 months of treatment and is waiting to move onto maintenance drugs to manage the illness, wants to broaden people’s understanding of blood cancers.
This month (March) is Myeloma Awareness Month and Julie hopes her story will help others to learn about the disease and have a better understanding of the symptoms to speed up diagnosis.
She is also grateful to her work colleague, Lucy Abbey, 37, from Hartlepool in Teesside, who is preparing to run the 2025 TCS London Marathon on April 27 on behalf of our charity.
Lucy was moved to take part in the event on behalf of our charity because of Julie’s experiences. Lucy said: “I was very sad to hear the news about Julie’s diagnosis and I instantly knew I had to do something to help. We’ve worked together for seven years, and she is hugely missed in the office – she’s a lovely, friendly person who is bursting with warmth and kindness.”
Julie was rushed to hospital in December 2023 with serious stomach pains which doctors initially believed could be caused by gallstones. She was also told she could be suffering from shingles.
But when blood tests and a bone marrow biopsy revealed she was suffering from Multiple Myeloma Julie, who has had a lifetime affected by anaemia, was shocked to discover the details of a condition she knew nothing about.
She said: “When I was taken to hospital I was in a lot of pain and on morphine, so things were a little hazy, but I remember being taken into a side room by a doctor and told that it looked like I had Myeloma. I had no idea what Myeloma was.”
“I’ve since spoken to a lot of friends and they had also never heard of it. I think there is a need for more education about the condition and I believe doctors are now looking out for it when patients report with symptoms like extreme tiredness and severe lower back pain.”
After being sent home from hospital Julie saw her GP. “I was booked on a Caribbean cruise a few days later and the doctor said to me: ‘forget all about the Myeloma and go on holiday,’” she said. “I had an absolutely brilliant holiday!”
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When she returned from her trip her treatment started in earnest, including gruelling sessions of chemotherapy and a stem cell transplant which she said left her with no energy and feeling “horrific.”
Julie, who lives in Billingham, County Durham, was treated in the Freeman Hospital, Newcastle and the James Cook Hospital in Middlesborough. She is continuing her oncology care at North Tees Hospital.
Her treatment has robbed her of all the protections against common illnesses and she is having all her childhood inoculations and vaccinations again. She has also lost her Covid protection and will need new coronavirus jabs.
She said: “The last year has been pretty difficult. Because I am so vulnerable to infection, I haven’t been able to go out very much or mix with people and I have missed seeing my twin grandsons, Tommy and Freddy – who are just four and have started school.”
She had her first weekend away in many months during February and went to London with friends to see the ABBA Voyage show at the ABBA Arena located at Queen Elizabeth Olympic Park.
She is now waiting for an oncologist’s appointment to hopefully get conformation that she is stable and can begin to take the drug Lenalidomide which should keep her healthy and the cancer at bay.
She said: “I know that I am not cured, but fingers crossed the condition can be managed and I can get back to a normal life.”
To find out more about myeloma and other types of blood cancer, visit: https://lmruk.org/blood-cancer-stem-cells/
