Fiona’s Story

In this interview, Fiona, 61, describes the shock she felt when, after months of tests, she was diagnosed with mesothelioma. Recently having moved to the Welsh countryside, she talks about the support she’s received from her Mesothelioma UK Clinical Nurse Specialist, as well as how using tools such as mindfulness helps her well-being.

How were you diagnosed?

“I was diagnosed last October, but my symptoms had started in February. I was 61, reasonably fit and healthy, but found myself increasingly breathless. We have a little track that leads up to our cottage, and I was getting increasingly out of breath while going to get our post each morning.

Initially, I thought it was a post-Covid thing, but it kept on getting worse, so I went to the GP. They sent me for a chest x-ray – they could tell just by doing an external examination that my chest didn’t sound right. Indeed, the x-ray showed I had water on my lung. I was then sent to the respiratory department where I had a CT scan. That’s also when they started draining some of the fluid and did more tests to try and find out what was wrong.

This continued for about 3 months. All the tests came back negative. They asked about my history, such as working environments. But I had no obvious occupational exposure, which left the respiratory consultant quite puzzled. At this time, they still weren’t directly talking about asbestos or mesothelioma, so I was really none the wiser.

One of the nurses from the respiratory team came to see me. She asked if I needed support or help with any symptoms. At the time, she didn’t introduce herself as a Macmillan nurse, but when she left, I looked at the card she’d given me and thought, ‘this might be more serious than I’d realized’.

 

“Looking back, I guess that’s when I should’ve asked a few more questions. But as far as I knew they thought it was still infection based, and I guess that’s what you want to hear at the time.”

 

In July I was still no closer to a diagnosis, but I did finally have a biopsy, they also drained off about 4 litres of water from my lungs. They left a tube in so the procedure could be done more easily in future (known as an indwelling pleural catheter, see our booklet for more information).

 

“When he told me they specialised in asbestos and mesothelioma, well, it was like getting hit with a cricket bat.”

 

It then took months to get the results because when it came back from the lab, it was inconclusive, so they sent it to a specialist. On the 13 September, I got a call from the respiratory consultant. I remember I was in a department store; it wasn’t the best of places. I should’ve asked him to call me back, but that’s when I pressed for who the specialist was at the test lab. When he told me they specialized in asbestos and mesothelioma, well, it was like getting hit with a cricket bat. Even so, the actual conclusive diagnosis still didn’t come back until the middle of October, and when I got my diagnosis, it was one of those bottomless pit type moments.

 

“It was so brilliant because she [Mesothelioma UK CNS] knows so much.”

 

A couple of weeks before I got that diagnosis the consultant said he’d been in touch with a clinical nurse. That turned out to be one of the Mesothelioma UK Clinical Nurse Specialists. I didn’t speak to her in person until the day after the diagnosis when she rang me. It was so brilliant because she knows so much and gave me practical advice but was really supportive at the same time. The first thing she said was ‘every case is unique, please don’t go researching this yourself on the net because you’ll just scare yourself’. This was exactly what I needed to hear. I’d done a bit of searching already but had just felt overwhelmed with the medical and legal sites that had come up.

 

What has your life been like living with mesothelioma?

It’s certainly been taken over by the treatment. Whilst the treatment itself might only be on the day, the after effects last at least two-to-three weeks. With some help and guidance from the Mesothelioma UK CNS we started out on immunotherapy. It wasn’t offered initially but she pushed the point and I got approval in December. But unfortunately, one of the immediate effects was that it gave me something called immune thrombocytopenic purpura (ITP), a blood disorder that messes up the platelets, so they had to stop treatment straight away, and after a month or so I moved across to chemotherapy.

I had my first treatment on 24 February. The first three days around it aren’t too bad as they give you drugs that stop you feeling lousy, but then after that my side effects seem to change or develop different nuances after each treatment. Fortunately I’ve not been physically sick but I have felt nauseous. I experience tremendous tiredness, and the nerve endings on my feet and hands feel a bit numb. Some months there was only about a week where it was back to normal-ish as the blood disorder meant I had to get blood transfusions which meant even more trips to hospital.

But the positive side is that it’s a very early stage and the last scan I had shows it hasn’t really progressed over the last 6 months, so all the aggro has been worth it!

 

What help and support have you had?

“The Mesothelioma UK CNS is always there to have a conversation with, and we keep in touch. We also have joint calls with my partner, and it’s really helpful to be able to involve him in this way.”

 

The hospital triage line has been great. If you’ve got any concerning symptoms such as a temperature or any unexplained bruising, or in my case mouth ulcers, they’ve got a traffic light symptom which helps you gauge urgency. Then if you ring them they’re on the case straight away making sure you get seen. And my lesson is use it. You think after you’ve had one or two months of it, “Oh well I know that now” and you start getting a bit lax, so my big thing is don’t be afraid to call if there’s any concern whatsoever 24 hours a day.

The Mesothelioma UK CNS is always there to have a conversation with, and we keep in touch. We also have joint calls with my partner, and it’s really helpful to be able to involve him in this way.

 

“I was a bit hesitant [to apply for benefits] because I don’t feel awfully ill a lot of the time. I felt a bit guilty. But everyone I spoke to said there’ll be days when you’re tired and exhausted and that blue badge will really help.”

 

Macmillan were also very helpful with things like benefits, getting monthly payments to help with the additional costs. That was good because they did all the leg work, but I must admit I was a bit hesitant because I don’t feel awfully ill a lot of the time. I felt a bit guilty. But everyone I spoke to said there’ll be days when you’re tired and exhausted and that blue badge will really help. You won’t have to struggle with carrier bags to the other end of the car park. They’re right, because of course, in amongst all this, you still have to do your daily shopping and stuff. Coupled with this, there is the psychological element – it reminds you that you have something that is serious enough to be getting these things in the first place, and that is difficult to come to terms with.

If you’d like to find out more about benefits, see here.

 

How did you tell people?

It took us a while to get our own heads around it before we were ready to share the information. To start with we only told a few people, such as my mum. It was then at least three months before we told other close friends, and that was when we were face to face so we could gauge their reaction and know how much to tell and not tell. And we still don’t have all the answers, especially about prognosis, there isn’t a lot of research out there about my age group and sex.

Do you have any tips for people?

“…keep talking, especially to those closest to you because they find it more difficult than you in some ways.”

 

I’ve been doing mindfulness for about five or six years. That’s really good – you stop and pause and try not to immediately react to things. I go to an online group session every Monday. Since we’ve moved to such a lovely place in the Welsh countryside, it’s even easier to go and sit outside and practice! And just keep talking, especially to those closest to you because they find it more difficult than you in some ways.”

If you would like to find out what support is available to you, for example by speaking to one of our Clinical Nurse Specialists or finding out about local or online support groups, call 0800 169 2409

 

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Disclaimer: These stories are based on personal experience and do not constitute medical advice. We recommend you speak to your healthcare team or phone our support line if you have any questions relating to your care or treatment.

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