After her initial visit to her GP with a cough she couldn’t shift, it took further visits and nearly a year for Emma to get a diagnosis of mesothelioma. In this interview Emma, now 49, describes the impact it has had on her and her family and how, in the 10 years since her diagnosis, she has learned to live with mesothelioma.
How did you get diagnosed?
“I got diagnosed on 26 November 2012, about 10 months after my first visit to my GP. I was working with special needs children in a mainstream school at the time, and I just couldn’t get through a lesson without coughing or needing a drink of water – it was very distracting.
“Eventually I went to the doctor. But he said my chest seemed fine and that there was nothing to worry about. A few months later it was still there, and people were starting to comment on it, so I went back again, and he told me, ‘Emma – there’s nothing there, I can’t hear anything.’
“I had no idea what a lesion was, I got into the car with my friend who had dropped me off, we talked about what it could mean, could it be this, could it be that?”
“But still it persisted. The third time I went I got another doctor, who noted I’d been a few times already so referred me for an x-ray. I didn’t hear back from them for a few weeks, so I rang them, and they asked me to come in the following day. I saw the same doctor as before and they said that the x-ray had identified a lesion, but that I’d get a letter explaining everything in more detail.
“I had no idea what a lesion was, I got into the car with my friend who had dropped me off, we talked about what it could mean, could it be this, could it be that? When I got home mum started reeling off all these possible diagnoses, she thinks she’s a medical doctor via Google! But at no point did we think it was anything particularly serious.
“In the meantime, the GP had wondered whether my cough was from a nasal drip, so he’d referred me to Ear, Nose and Throat. But I got a letter from them saying they weren’t concerned about the x-ray and that ‘it’s too pretty to be anything sinister’, in other words too symmetrical for what in their experience usually signified cancer. Nevertheless, they asked me to come in for a biopsy.
“On the day of my appointment, I came in and sat down in the waiting room. My appointment was at 1:30pm but I was still sitting there at 2:30pm, everyone else had gone. My husband said to me, ‘You did tell them you were here?’ I said ‘Of course’. Eventually a doctor came out, didn’t look around, but just shouted my name. I followed them into the room, and that’s when they said, ‘I’m really sorry to have to tell you it’s come back with something called mesothelioma.’.
“We were just in shock. I felt like I’d stepped onto a conveyer belt.”
“We were just in shock. I felt like I’d stepped onto a conveyer belt. A cancer nurse descended and took me off to see another doctor and then a surgeon, who said I needed a second biopsy as he wasn’t certain of the diagnosis given my age. So, there we were, first I’m told I have mesothelioma, a cancer I’d never heard of, and then I’m being told I might not have it. My mind was spinning, and I just didn’t know how to break it to the rest of the family.
“We’ve got two sons, one was at university, but the other was at home. When we got back that day my son asked how it went, but I needed time to come to terms with everything before telling him, so said I wasn’t going to be getting the results till Wednesday. Then I just remember going upstairs and crying. We couldn’t even remember what the name of the cancer was. They’d said to us don’t Google it, but we couldn’t anyway because we couldn’t remember the name of it!
“Two days later we went to cancer clinic and met the oncologist. I asked them if there were any clinical trials. She said there aren’t any, we’re just going to throw this chemo at you and hope for the best, and that I’m probably looking at 12 to 18 months. We walked out feeling less hopeful than the day we were told.
“We couldn’t even remember what the name of the cancer was. They’d said to us don’t google it, but we couldn’t anyway because we couldn’t remember the name of it!”
“This was the day I was going to break the news to everyone (my mum and two boys), but when we got home, I sat in the car and said to my husband that I couldn’t do it. He asked me if I wanted him to, I said ‘yes’. He did ask everyone not to cry, which didn’t go down too well with my mum, but I think he just wanted to protect me from the inevitable whirlwind of emotion.
“When I went to get the results of the second biopsy, the doctor told me it’s come back showing no cancer. I said ‘…but that first one did?’ She said ‘yes’ and recommended that I had the whole thing removed. I had the procedure, but unfortunately it burst as they took it out, so I had to have radiotherapy and then six cycles of chemotherapy.
“It was at this point I joined a support group. The name Professor Fennell came up in relation to clinical trials, I’d been told there weren’t any, so I sent him an email. It was the best email I ever sent. He said to come down to Leicester. He told me there were two or three trails going on, but the first thing he needed was my baseline and a CT scan.
“When I got my results, he said he was so sorry, but that it’s already grown. It wasn’t that long after my last treatment, but he said he was going to give me some chemo and we’ll scan you after two and see if it’s doing anything. Well, after two it had shrunk, and after four it had got a hole in it. I think I’ve been eight years since then.”
Has having mesothelioma changed your priorities?
“When I was first diagnosed, I was determined to go back to work. My job involved working with children who could have challenging behaviour, which I loved, but it wasn’t something I could return to until I was physically and emotionally ready. Fortunately, I had a really understanding head who told me I must finish my treatment first and not to rush back.
“So, I was devastated when he told me he’d got a new job. I went in to meet the new head, but they didn’t even ask me how I was, and just expected me to take on a load of new responsibilities. It just wasn’t the same as before and I felt totally unsupported. I walked out and sat in my car and cried. I decided then that I couldn’t go back.
“So now I help my sister-in-law, who, since my brother died, has the sole responsibility of looking after two children with additional needs. I also see my mum a couple of times a week. Being able to spend as much time with my family is very much my priority now. It’s funny, every Christmas I think to myself I want to make it a good one in case it’s my last, and every year my husband will say ‘Can we just have us two this year?’, and in January I’ll agree, but by August I’m like ‘no chance!'”
How do you feel about asbestos and current management of it?
“You’re not aware of where asbestos is until it impacts on your life.”
“I don’t know where I got exposed. I grew up in a house that had asbestos, I went to primary school that had asbestos, and when I became a teacher, the schools I worked in had asbestos. You’re not aware of where asbestos is until it impacts on your life. But it’s everywhere. I know it’s going to cost a lot, but I think it should all be removed.”
Living with mesothelioma
“In some ways my anxiety levels have got worse the longer I’ve been healthy, I’m always waiting for that other shoe to drop.”
“Living with it day to day it depends. In some ways my anxiety levels have got worse the longer I’ve been healthy, I’m always waiting for that other shoe to drop, even when a scan shows no growth, I’m relieved but I’m also anxious because I’m already thinking about next time. I’m particularly anxious the two weeks in between the scan and appointment, it’s a hellish time for my husband because I’m a bit short tempered and the cooking often gets burnt!
“We all know that we’re going to die, but finding out every three months that you’re back on the path to dying is a bit different. I’ve got my own coping skills and there just comes point where I need to vocalise them to someone, and it be not a family member or friend.
“I’ve nipped in a little bit to counselling here and there. But I’ve yet to find the right one. The first time they talked to me like I’m dying and on my death bed so that made me retreat. I don’t want someone who is just going to rub my hand and say, ‘Oh dear.’
“I follow some of the online support groups, I don’t regularly post, but I do get messages from people that have read my story on the website. They are often looking for a bit of reassurance, and just a chat really from someone who knows what they are going through.
“Looking back on it all now I was very naïve – there’s more questions I would’ve asked initially knowing what I know now, but you’re just in this shock and bubble. I think possibly the best thing you can do is when you’ve got that diagnosis is, unless it’s really urgent, go to a support group, talk to some people, let it all sink in, just think about all of the options before you get on that conveyer belt. Because, for me, going to Leicester made all the difference, not just in terms of treatment, but also the way they were – I didn’t feel like a number, whereas that is exactly how I’d felt at the previous hospital.”