Image source, Carol McGachie
- author, Angie Brown
- role, Edinburgh/East Scotland correspondent, BBC Scotland
Carol McGachie says she felt like she was receiving electric shocks every night when she went to sleep.
She paced back and forth with intense tingling pain running from her legs down her arms.
The mother-of-two, from West Lothian, lost no sleep because of the pain.
When she went to the doctor, she was prescribed painkillers to ease her back pain, but Carol thought there must be something more serious wrong.
“It felt like I had been plugged in,” the 56-year-old told BBC Scotland News.
“It’s an intense tingling sensation that doesn’t go away. I can’t feel anything in my skin or hands.”
“It’s worse than a needle prick, but it feels similar and hurts a lot more.”
Image source, Carol McGachie
When it started happening in the daytime, Carol got scared and panicked.
So she went back to the doctor and, after almost a year of tests and scans, was diagnosed with myeloma, an incurable blood cancer.
Carol underwent six months of chemotherapy at Western General Hospital starting in October 2022 and is currently in remission.
“At first, you definitely feel self-pity,” she says.
“I know this is an incurable disease and it will come back.
“Every time I feel pain I think: ‘Is it hurting again?’ It’s a bit of a nightmare.”
Image source, Carol McGachie
So now she lives in the moment and tries to forget about it.
“Sometimes it feels like you’re living from test result to test result every three months,” she said.
“I know it’s always going to be there and I don’t block it out, but I’m trying to move on a bit and it’s not my main focus anymore.
“Having fun with my husband, Michael, really takes my mind off things. He’s a great guy.”
She has more travel planned, including a trip to Canada to see her son Ross, and her daughter Emma, who is due to get married later this year.
Carol, who has two stepchildren, is now taking medicine for nerve pain to help tame the sensation of being in shock.
Image source, Carol McGachie
“My fingers and toes still hurt, but I no longer feel pain in my legs or arms.
“If I get unwell or have a virus or a cold, the symptoms come back a little bit.
“My fingers felt like they were burned and now they’ve been that way forever.”
Dr Sophie Castells, chief executive of the British Myeloma Society, said myeloma was the third most common type of blood cancer but was often overlooked.
That’s because symptoms such as back pain, easy fractures, fatigue and recurring infections are vague and often associated with general aging or minor illnesses.
“Every day counts while waiting for a diagnosis, but a third of patients visit their GP at least three times before receiving a diagnosis,” she said.
“One of the biggest obstacles is identifying symptoms quickly before too much damage is done.
“We know that doctors and patients can use completely different words to describe the same symptoms.”
“I don’t know why it took so long to diagnose it, but we were lucky they caught it before it caused any organ damage,” Carol said.
“My advice would be to be a bit more vocal and push back a bit with your doctors, rather than just taking their word that you know your body and there’s nothing to worry about.”
“You have to trust your instincts and not be embarrassed to go to the doctor multiple times.”
She encouraged doctors to ask for blood tests if they see patients with similar symptoms.
“I read an article the other day that said myeloma is so rare that it’s something you have to think about when examining patients to rule it out,” she added.
“Now I have it and I think my GP is making good use of it.”
