Myeloma battle took dad’s eyesight, now he fights on after cancer returned

Andrew Castledine went through hell on the path to remission, through a brutal stem cell transplant and ongoing chemotherapy, but the 63-year-old said he had to keep going for his family.

A father of four, Andrew was diagnosed with Multiple Myeloma in February 2010 after doctors first thought he had kidney failure.

It took months to be diagnosed, though, he adds: “I’m a keen walker and climber, and it was on a walk in Scotland I first noticed I was having problems when I couldn’t keep up with my party. I just thought I was out of shape, I was telling myself ‘you’re unfit, you’re lazy, you need to toughen up’, so I went to the gym, and I just didn’t have the energy to do the basics.”

By December 2009, he wasn’t feeling well at all. “I had no energy, headaches. I went to the doctor and his words were: ‘You’re blood is an absolute mess’.”

Considered incurable but treatable, Myeloma affects the production of plama blood cells inside the bone marrow, damaging the bones and making plasma cells reproduce abnormally which in turn affects the body’s ability to fight infection.

And during Andrew’s first bout of chemotherapy, disaster struck as his immune system diminished and he contracted an incredibly common virus, Cytomegalovirus, which most people are exposed to in their lifetime, but for Andrew in his weakened state, damaged his retinas irreparably.

“It was scary, losing my vision was really distressing. But in a way I was just so focused on the cancer, and dealing with that, it wasn’t important.”

And the shock change to his life came at the worst time, as he had to deal with blindness while going into extensive care for a bone marrow transplant, which is followed by intense chemotherapy, leaving the body extremely vulnerable.

“It wipes out your immune system, so I was shut in an hermetically sealed isolation room for three weeks.

“I was on my own, blind, sick, not enough energy to get out of bed. All your normal bodily processes go out the window. It wasn’t a pleasant process. I was convinced I was going to die. After three or four days I didn’t think I was going to make it and neither did the doctors, so they agreed to let my wife move in the room with me. It was frightening.”

But the stem cells worked, and they bought Andrew years after being told he would live only 18 months. It took three and a half years before the cancer came back.

“I knew it would buy me time,” he says. “But it wouldn’t be forever. Some people get a year, some people like me get three, or five year, and some people don’t get any remission at all.”

Losing his eyesight was a cruel twist of fate – while everyday is a blessing, Andrew is significantly restricted in what he can do each day.

“The blindness is very debilitating. It’s little things I wish I could do in the day that upset me, like driving to the shops, or mowing the lawn – so many things fall on my wife now.”

And according to his wife, Hazel, 59, it’s been difficult to watch Andrew go through chemo again.

“He has his good days and his bad days,” she says. “Myeloma adapts and learns, so it’s only a matter of time before it becomes immune to the chemo drugs and they’ll have to put him on something else.

“But we’re a very positive pair and we aim for the future, and when he’s really bad you have to concentrate on just that day and not look too far.

“Before this we couldn’t comprehend how anybody lives with cancer. As hard as it is, you know this is what you’ve got to live with and you get through it.

“Nothing prepares you until you’re on the journey and then you’ve just got to keep going.”

But even after taking the hit of the cancer’s return last year, Andrew is still telling himself to toughen up today.

He added: “I never look back. You’ve got to keep fighting, and I tell myself I’ve got to keep going and push forward. When people ‘I wish I’d done this, that and the other, I say you can’t do anything about the past, you’ve got to focus on the future.”

Andrew and Hazel are running their annual Coffee Morning/Craft Fayre at Pentrich Village Hall, Pentrich on Saturday, November 7 to raise for Myeloma Support.