Living with lung cancer: “I think my illness is caused by asbestos in schools or hospitals”

I am a registered nurse and have survived the pandemic. In February 2020, the number of Covid patients really started to rise, and two months later I got Covid myself. I tested positive for six weeks because then we were tested every week before going back to work.

I had chest pains after Covid and couldn’t figure out what it was. At some point it wears out. I had my first Covid shot in December 2020, after which my chest pains returned. I then decorated the house and thought that I had torn my sternum, so I took anti-inflammatory drugs for a couple of weeks and again the pain went away.

In March 2021, I received my second Covid shot. The pain returned and never went away. All of my symptoms seemed to be associated with gallstones as I had right upper quadrant pain radiating to my shoulder blade. So I had all the risk factors for gallstone disease: female, white, overweight, 40 years old, fertile. So I thought that was it.

I went to a good surgeon who said the best thing to do was an ultrasound that found a pleural effusion. Have two pleurae [a thin layer of tissue that covers the lungs and lines the interior wall of the chest cavity] – one on the outside of your lungs and one in the cavity, and you have some natural fluid between them. A pleural effusion is a collection of this fluid that compresses the lungs.

I had no symptoms at all – no shortness of breath, no cough, nothing else. So they cleared that and the cytology [an exam of a single cell type, as often found in fluid specimens, mainly used to diagnose or screen for cancer] Came negative from liquid. But if you test 10 people for lung cancer, about seven of them will have a negative cytology result.

The fluid accumulated again for about a month. I then went to a cardiothoracic surgeon who said that we would drain the fluid again, but this time we would do a talc pleurodesis, in which they put surgical talc between the two layers of the pleura to prevent the fluid from accumulating again. And they took a biopsy.

Five days later, on August 6, 2021, I was diagnosed with pleural mesothelioma. [a type of cancer that develops in the lining that covers the outer surface of some of the body’s organs].

Since I worked as a respiratory nurse, as soon as I found out that I had a pleural effusion, I knew that it was something serious.

Over the years, I have seen patients with all kinds of respiratory problems, including mesothelioma. But when I thought about what was happening to me, mesothelioma was one of the things that I just brushed aside because, like everyone else, I view it as a disease of old age. So I went ahead and thought it might be a different type of cancer or an advanced lung disease.

The information available on the internet about mesothelioma is rather vague, but with my scientific mind, I felt like I didn’t fit into all of those categories.

I am not your typical mesothelioma person. I have been a woman since the beginning. I was 38 years old when I was diagnosed. I just wasn’t in that demographic. For the first month after my diagnosis, my feet did not touch the ground. It was just a whirlwind. You don’t know how to deal with it. There is no cure, so start doubting your mortality. Psychological impact, financial impact, social impact. can i do my job My life changed dramatically at that moment.

I was an advanced intensive care physician in an intensive care unit in the North East of England, similar to a resident’s unit. I loved my job. In my head I thought it was gallstones, so I imagined a storytelling job. “It’s okay, I’ll have my gallbladder removed and I’ll be back.”

It was actually a colleague and friend, one of the ventilator consultants, who diagnosed me. The first question I asked him was, “Can I get back to work?” He said, “Maybe it’s not your priority right now.”

However, it was almost a year before I made the decision to retire for health reasons. I didn’t think it was good for the NHS that I was sick all the time, was in the hospital and had to get out. People wonder if I’ll be at work, if I’ll get chemo or other treatment in my spare time, it’s not good for my colleagues or for me to sit at home feeling guilty about being sick. I wanted to control my life. I wanted to choose what I want to do.

I completed six cycles of chemotherapy from September to January 2022, strong treatment. Dual immunotherapy was not available on the NHS at the time, so it was not an option. I had a positive scan in March 2022 showing shrinkage, no growth and no metastases.

A follow-up scan in June showed growth, so I was included in a clinical trial in Leicester called MiST. [Mesothelioma Stratified Therapy] (5) Research funded by Asthma + Lung UK. I’m on immunotherapy every six weeks and I take a parp inhibitor every day – it’s like a double-sided cancer attack.

If this continues to work, I can get immunotherapy within two years. You can use a Parp inhibitor for five years if it works. As for the forecast, I never asked for it and do not want to. I just want to live as long as possible.

At the moment I am in good shape and healthy. I do a HIT session twice a week. If you looked at me, you would not know that I have lung cancer. I don’t look like a person experiencing this. Other than going to Leicester for treatment and staying there for a few days, I don’t really mind. I’m just living my life the way I would.

Mesothelioma is almost always caused by exposure to asbestos, so I must have been exposed over the years. Asbestos is present in 85 per cent of British schools and more than 80 per cent of British hospitals – and these are the places where I spent most of my time. I was born with a cleft palate, which caused me to spend a lot of time in the hospital as a child. I had 13 surgeries. I went to a high school that had asbestos. I went to the university where there was asbestos. I’ve worked at the hospital for the last 23 years, and we know it contains asbestos, so it’s likely that it was found in one of these places.

Now I appreciate things in everyday life more. I really got rid of many negative things in my life – people, things, tasks. I had no more room for her. Often we put up with something because we want to be polite or because we don’t want to rock the boat. But that doesn’t bother me now. I want to do what I want.

I have all my ducks to write my will, plan my funeral, write letters to people – that element of regaining control. I’m not working now and I feel like I’ve lost a bit of my personality. But then, just like that, I can choose what to do every day and do a lot of fun things, which is good.

I’m going on vacation – we’ve just returned from a holiday in the Dominican Republic. I just learned to ride a motorcycle. I passed the exam in October. I used to ride scooters when I was younger and always said I would, but I never thought it was the right time.
I have a list in my head of what I want to do. It’s really about the experience. I wanted to blow the glass, I wanted to throw the pot, that’s what I did. I wanted to fake, I did, I wanted to make a gin, I did.

It was hard for my family. You don’t want to make people angry all the time, so it’s hard. I have a husband and three children who are very supportive of me. It helps a lot the fact that we are all so honest and that I am a pragmatic person – I do not hide my head in the sand and speak openly about things, it helps. My family also supports me in raising awareness about mesothelioma and the dangers of asbestos. It’s quite a catharsis for everyone.

I joke about it with my husband. I will ask him to make me a cup of tea, and if he refuses, I will remind him that I have lung cancer. We’re broadcasting it, but we’re just as realistic and honest about it. Sometimes we get angry about it, we cry about it, but then we move on. I’m not the type to get involved.

For more information on mesothelioma please visit the Asthma + Lung UK website or call 0300 222 5800.