Mum diagnosed with incurable disease after months of 'severe tingling'

Carol (left) wants others to go to their GP with their symptoms.
-Credit: (Image: Myeloma UK)


A mum who felt as if she was "plugged into the mains" has been diagnosed with an incurable disease after months of suffering.

Carol McGachie, from Scotland, experienced severe tingling in her fingers and toes and found herself unable to sleep at night. Then, in November 2021, she was diagnosed with an incurable blood cancer called myeloma.

Now the 56-year old-nurse is encouraging others to consult their GP and is determined to spread awareness about the critical symptoms "before it's too late".

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The mum of two, who also has two stepchildren, said: "I was exhausted all the time. I used to regularly bake and cook, I loved gardening. I would walk our dog for miles - but I just didn't have the energy for it anymore. I declined invites to social occasions because I knew I would suffer the next day.”

Carol believes that GPs are not sufficiently informed about blood cancer and failed to connect the dots in her case. As a nurse, she was aware of myeloma but did not fully understand what it was or its effects, reports the Daily Record.

She added: "I would not have associated back pain with blood cancer. That's why awareness is so important. Now I try to raise awareness through work and I've told some of my patients about my diagnosis and symptoms.

"I think I left it too long and tried to manage the pain myself. My advice would be: You know your own body so be more vocal and push a bit more with the doctor, rather than accept their word that it's nothing to worry about.

"You know what you used to be able to do before but can't do now. If you don't go in and ask questions you're not going to get any answers."

Carol revealed her first symptoms appeared in late 2020, when she began experiencing back and hip pain. Her doctor quickly dismissed it as sciatic pain, prescribing painkillers and recommending physiotherapy. She then suffered two episodes of shingles that winter.

Carol added: "I'm a nurse so I'd put it down to having 'nurse's back'. But things kept getting worse and that's when the tingling in my fingers and toes started at night. It went on for months and months. I thought it might be something along the lines of MS."

It took several months before she was referred to a haematologist and received her diagnosis. She added: "I felt relief that I wasn't going mad and that there was actually something wrong.

"But it was also hard because it was not something they could cut away. You hear the word 'incurable' and you know it's a cancer that's going to be with you forever."

She added: "I'm not sure why it took so long to get diagnosed but thankfully they found it before I had any organ damage. Since I was diagnosed and attached to a consultant, the care has been impeccable and having a direct number to the myeloma nurse specialist is invaluable, no question is too small."

Carol started her chemotherapy treatment at the Western General in October 2022 and is now celebrating her remission. She expressed her renewed zest for life, saying, "I'm more determined than ever to live a full life."

Looking forward to embracing her role as a grandmother, she remains optimistic due to advancements in medical treatments, despite knowing the nature of her condition: "I know it's incurable and it will come back."

She shared the emotional toll of living with the disease: "Every time you get aches and pains you think 'is it back? ' Sometimes it feels like you live from test results to test results every three months. But I've got quite a logical mind and I've had a few years for it to sink in. There are so many treatments now."

Carol and her family have adopted a seize-the-day attitude: "We were always living for today but even more so now. We're just enjoying life and this year we're going to travel to Canada to visit our son Ross."

She also has joyous family events on the horizon: "Then our daughter Emma is getting married in November. In the beginning, my whole life was myeloma. I know it's always going to be there and I don't block it out, but I try to move on a bit and it's not my central focus anymore."

Carol now sees a brighter future ahead: "Now I see a future, more so than I did a few years ago."

Myeloma UK highlights that around 5,900 people are diagnosed with myeloma annually in the UK. A Myeloma UK spokesperson commented on the challenges of diagnosis: "Despite being the third most common type of blood cancer, myeloma is frequently missed, as its symptoms, including back pain, easily broken bones, fatigue and recurring infection, are vague and often linked to general ageing or minor conditions."

"One in four people wait more than 10 months for a diagnosis. These are some of the longest delays out of any cancer in the UK. Yet, a simple blood test can, in most cases, pick up signs of myeloma."