A woman was scared her brain would "pop out" after a doctor showed her a scan of her head.
Doctors were stumped when Dorothy, from St Michael's, suffered a series of infections affecting her chest and urinary tract, and experienced back and bone ache with no apparent cause. When she lost the ability to open and close her left eye, she thought she'd had a stroke.
That turned out to be a "horrible" bout of Bell's palsy, usually caused by infections, but tests revealed nothing more sinister. Dorothy, who was a special education needs teacher at the time, said: "I thought I'd just get on with it and find out what it is at some point."
READ MORE: Paul O'Grady's secret wife breaks silence after star's sudden death
Eventually she did. A new GP at her practice, worried by yet another infection, this time in Dorothy's spleen, suggested a specialist blood test at Royal Liverpool Hospital. After taking a bone marrow sample from her hip, a consultant told her she had multiple myeloma.
Dorothy, 69, told the ECHO: "I'd never heard of it. I didn't even know what it was. I thought it was just another infection that we're going to deal with. You hear so many words, so I just thought, 'Oh yeah, I'll have some antibiotics and I'll be fine'. But that's not true."
Less than a third of people live longer than 10 years after diagnosis with this elusive bone marrow cancer. Usually picked up through routine blood and urine tests, it may not cause any symptoms in the early stages.
There's no lump or tumour, it just eats away at bones around the body and disrupts the production of healthy blood cells, weakening the immune system.
Most cases of multiple myeloma can't be cured, although they can be treated. For Dorothy, they were able to leave it smouldering away for another six years before needing treatment when blood tests showed the cancer was spreading.
Dorothy, by then a head teacher, needed to start chemotherapy just two days later. She said: "That was a bit of a shock. Your first thoughts are always, 'What's next? How long do I have?' I think it's fear and then it's acceptance, and then the treatment takes over and that becomes your normality."
She was also offered a spot on a clinical trial using thalidomide tablets to kill myeloma cells, alongside chemotherapy. Thalidomide had a reputation for causing disability, deformity and missing limbs in babies born to people on the medication during pregnancy, thanks to a scandal that broke in the 1960s.
This made Dorothy pause until she learnt it really only affects babies in the womb. She said: "My thoughts were, if you go on a drugs trial, and it helps you and it helps other people and it helps research, then I'll do it."
After a year of treatment, Dorothy was booked in for a stem cell transplant for a better chance of preventing the cancer from being active again. First, she needed to have a high dose of chemotherapy stripping her body of bacteria.
Dorothy said: "I don't think anyone is prepared for how intense it could be, but I was well prepared by the staff at the Royal who were absolutely incredible."
Afterwards, they restored her stem cells through a sweetcorn-scented liquid injected through a cannula. The process left Dorothy exhausted. She said: "All you want to do sleep. You don't want to talk to people, you don't even want people to be in the room. It can be pretty horrid."
She was still tired months later, but with the support of family, friends, neighbours and the NHS, Dorothy recovered. Soon she was back to work and life as normal. Dorothy said: "When you first go back to work, you get a cold and think, 'Oh no, am I going to get an infection?', because you still have a weakened immune system. It's still not brilliant. It takes a long while for your immune system to recover.
"But after a while you just can't do can't think every sneeze, every cough, every child that comes towards you with a runny nose, is going to cause you a problem, because it would drive you mad."
Dorothy didn't think much of it when she started suffering aches in her back and head a decade later. She put it down to all the time spent driving around as, by then, an Ofsted inspector.
She said: "Then one day in May 2014, I remember it well, I was out to lunch with my friends and my phone rang. It flashed up as the hospital. I thought it was strange they were ringing me, but I just shrugged my shoulders and carried on with my lunch.
"I didn't even phone them back straight away. I waited until the next day because I didn't think it was anything wonderfully important. When I phoned back, they said 'You need to come in today'."
Dorothy felt fine, but a routine blood test showed the myeloma was active again. Telling her kids was the hardest part. She said: "How do you tell your kids your cancer has returned? I said to them, 'If I need treatment again, I'll have treatment again, and it will work again."
When her doctor at the Royal showed a scan with specks of shadow like a colander, or salt and pepper on her skull, with another shadow at the top of her neck, Dorothy worried her brain would "pop out through the holes".
The cancer had eroded 70% of two bones in Dorothy's neck, leaving an extremely high risk it could damage her spinal cord and leave her paralysed.
Dorothy said: "It sounds absolutely stupid, but you do wonder if you've got holes in your skull, what happens to your brain, what happens to the fluid? Does it come out?
"When they discovered how badly the bone had been affected, I had to wear a neck brace to hold my head in the right position for a few months. My spinal surgeon told me to be careful how I move my head.
"I was terrified of needing to sneeze or blow my nose or tie my shoe laces. Fortunately it was only for a very short time because they were able to do an operation, which was absolutely amazing.
"But one of my biggest fears was going to bed because what if a turned over in the night? I was scared to get a shower because I had to take the neck brace off, and as soon as you I got out, I'd put it back on. I didn't want to leave my head free to wobble."
A surgical team placed "scaffolding" around Dorothy's fractured bones and injected crushed bone to help repair the damage in a pioneering, nine-hour surgery never carried out in Liverpool before. A team in Nottingham assisted via video link.
After more chemotherapy and another stem cell transplant, Dorothy's cancer stayed away for another seven years until it was found again in her hip and pelvis. This time she needed her Covid-19 vaccines before starting treatment because of how weakened her immune system was, and how much weaker treatment with a range of drugs would make it.
Dorothy, who still goes for check-ups at Clatterbridge Cancer Centre, said: "I've now been having treatment for so long that I've known my current consultant since he was a junior doctor. The team at The Clatterbridge Cancer Centre have been fantastic and treatments have changed so much over the years."
She added: "Myeloma doesn't get the publicity of things like breast cancer or ovarian cancer because it is a complicated cancer. It's not easy to diagnose, it's not curable at the moment, and I just want to raise the awareness that you can live with myeloma. There's so much research happening at the moment, I am hoping and praying that a cure will be found in the very near future."
Receive newsletters with the latest news, sport and what's on updates from the Liverpool ECHO by signing up here
READ NEXT:
