Nicola Handley, Senior Associate Solicitor at Irwin Mitchell sat down with her client Terry to talk to him about his personal experience of what helped him following his diagnosis of mesothelioma and the advice he would give someone else after a diagnosis.
1. Can you tell us a bit about yourself and what is important to you?
My full name is Terence Cowell but my friends call me Terry. I’m 76 years old and I live in Huddersfield. I’m married to my lovely wife Karen and have two daughters, Melanie and Emma, a granddaughter Millie and a great granddaughter Daisy. My daughters also have two dogs Nancy and May that we regularly look after as well.
2. When you were diagnosed with mesothelioma how did it make you feel?
I was diagnosed with mesothelioma on 08 February 2019 and I remember the first thing I said to the Consultant was that “I hadn’t had a cigarette for 30 years”. She then told me it wasn’t smoking related and that there was no cure and life quickly became a whirlwind of appointments and discussions.
Of course, I felt a bit down because I’m normally a very jolly person and all I could think about was how I was going to tell the girls and all the lads at work.
To be honest, it felt quite overwhelming having to deal with how I felt about the diagnosis at the same time as having to share the news with friends and family and worrying about how it would impact them. My brother was really upset at the time and wanted it to be him.
We also spent some time looking online and when I think about it now, I wish I didn’t. It was all doom and gloom and gave us both more to worry about.
I was also told very early on that mesothelioma is related to asbestos exposure and I knew it my early years spent working as a central heating engineer, removing and installing heating systems and stripping boilers and asbestos lagging from pipework was the cause of this disease.
3. How has life changed for you since the diagnosis of mesothelioma?
The diagnosis has changed my life significantly and it’s difficult to describe to others the impact that it has actually had.
At the time of the diagnosis, I was still working in my own business. We manufactured and sold fish frying ranges across the country. I loved working in the industry and travelling the country meeting various fish and chip shop owners, measuring up the shops and then travelling back down with the team and fitting the ranges.
I loved being sociable and out and about and my job gave me real purpose and I was very proud of what I’d achieved. I had been the President of the Members of the Fish Frying Federation and it was a huge part of my life. I still remember now having to tell the other Directors of the business that I would have to retire and in complete solidarity with me, they all said that they were retiring as well.
We decided to sell the business much earlier than we would have done and this was a big step, not only for me but for everyone working at the business at the time because of my diagnosis of mesothelioma.
After I sold the business, I did feel a bit lost but thankfully I got on well with the new owners and I still go in once a week to see how everyone is doing.
I also enjoy playing golf regularly and would often walk around the golf course for five hours a day. Straight away this was something I couldn’t do any more but I realised I could still play golf and just had to get a golf buggy instead.
Karen and I also enjoyed travelling abroad and loved going to different places including Portugal, America and Croatia. Being out and about was a huge part of our life and that is something that had to change as well. We became very conscious about being unable to go away if I was having treatment and being in far flung places where I might not have the medical support I needed if I became unwell.
Your world can shrink after diagnosis of mesothelioma.
However, over time, we’ve managed to put back in place other ways of enjoying life and still try to get away when we can in the UK and places closer to home.
4. What treatment have you had since the diagnosis and how have you coped with it on a day-to-day basis?
I initially had six cycles of chemotherapy which was the first line standard treatment option at the time. I did find it bearable at first but became anaemic over time. I had to have a blood transfusion but I felt really well supported by all the nurses and consultants at the hospital.
Things then started to improve and everything was going on great. I started doing a bit of work for the new owner and bringing some drawings at home. It was fantastic to have a bit of normality back in my life which was really needed.
I was then told in December 2019 that the mesothelioma had started to grow again and that there were no other treatment options for me.
I felt like someone had hit me with a hammer. I truly felt miserable at this time and became very quiet and as Karen would say, a bit grumpy. Thankfully I had a lot of support from my family, my solicitor Nicola, SARAG an asbestos charity and the Mesothelioma UK support group in Yorkshire known as Messy.
I was quickly able to access the knowledge and experience of others and professionals which gave me the insight and inspiration to carry on and not just give up and walk away.
At first, I investigated clinical trials but I had an existing kidney function problem that meant I may not have been eligible and the CONFIRM Trial had just closed for recruitment in our area.
After having further discussions with others, I realised that private treatment might be an option for me and around the same time the Defendant admitted responsibility in respect to my legal claim.
I met with an oncologist at the Clatterbridge Clinic and he recommended that I start immunotherapy treatment which was not available on the NHS at that time.
I had my first cycle of Nivolumab on 7th May 2020 and it was a scary time. We were living through the height of the covid pandemic and nobody knew what they were doing from one day to the next and I was travelling miles to receive this treatment. I didn’t know whether it would work but I felt positive because I was doing something to stop the disease from progressing.
Four years on, I had my 50th cycle of Nivolumab on 23rd May 2024 and the nurses gave me some scones and jam at my appointment to celebrate how far I have come.
My treatment path has not always been easy, I have had some side effects particularly with skin problems and fatigue but I have tried to deal with these as best as I can. Karen is always great at finding solutions and speaking to the clinicians on my behalf and we both remain hopeful for the future and that treatment can continue and options remain open to me.
5. How has legal support made a difference to you and your family after your diagnosis of mesothelioma?
The legal support that I have had from Nicola and her team at Irwin Mitchell has been amazing. It’s given me a confidence that I didn’t know I needed at the time and reassurance that I have somebody supporting me now and in the future.
The team ensured that I got a settlement which provided funds for treatment but importantly also introduced me to other professionals, patients and organisations where I am able to share our experiences and challenges and take great comfort in knowing that you are not alone and that you can get through this with the support from others.
I would normally say that solicitors can be a pain in the neck and either not contact you when you need them or contact you too much. It’s never been like that with Nicola, she’s a true professional and really cares about you and always has time to listen.
The legal process can be worrying at times and particularly trying to recall what you did so many years ago is tough. There was also some doubt about whether seeking financial compensation was the right thing to do.
However, I’m forever grateful that I did. The legal process was so much easier than I anticipated and both Karen and I felt relief once the claim was settled because we knew that I would have the financial support for the care and treatment I would need going forward. Nicola and the team also remain in touch and are always happy to help with any queries or support that I may need, even if it’s not related to the claim.
6. How has attending a Support Group benefited you and your family?
I have been a member of the Mesothelioma Support group in Yorkshire known as Messy since my diagnosis. It’s run by our local mesothelioma UK nurse, Simon Bolton.
I can remember before I joined the group, I called Simon up on the phone and even before he’d met me face to face he was able to reassure me about some concerns I had with my health at the time.
Simon is fantastic in his role as a mesothelioma UK nurse and in particular supporting everybody in the group. There are lots of different people in the group, different characters and at different stages of their mesothelioma journey but he has time for everyone.
Two retired nurses, Jo and Alison are also part of the group and they are always around to lift your spirits when needed.
We also have a WhatsApp group that helps us all keep in contact with each other and celebrate the milestones whether they be another cycle completed or a birthday or trip abroad.
When new people join the group you can see the concern on their face and when they walk out the room you can physically see them more relaxed and relieved that they are not alone.
I’m grateful to be able to help others and talk to them about my diagnosis and my treatment because I know it gives them hope for the future.
7. What advice would you give someone who has recently been diagnosed with mesothelioma?
I would suggest that they reach out to their local mesothelioma UK nurse and join a support group if there’s one in their region. I would also advise them to talk to other people in the same position. Sadly, two people I know were also diagnosed with the disease after my own diagnosed and being able to support them has meant a lot to me as well.
It’s also important to include your family members in your efforts in learning more about the diagnosis and finding out about care and other things that you can do. I know it means a lot to Karen as well to be part of the mesothelioma community and she gets a lot from attending the group as well.
8. And finally, what are you looking forward to in the future?
I want to enjoy living my life as long as I can with my family and friends. Maybe a few more holidays and a couple of rounds of golf wouldn’t be bad as well.
