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I lost my husband to mesothelioma
Ana lost her husband, Alan, to mesothelioma. She shares his story to highlight that more needs to be done for people with this devastating disease.
Alan isn’t around anymore to tell his story, so I’m doing it for him. I fell in love with Alan 20 odd years ago because of his big heart, smile and positive attitude - even when things weren’t smooth. After being his full-time carer for over 4 years, I saw first-hand the damaging effects mesothelioma can have.
It’s important we don't talk just about the few success stories. Much more needs to be done to improve the treatment and outlook for people diagnosed with meso. That way people can have real hope.
Getting the mesothelioma diagnosis
When we lived in Spain, Alan had pain in his left shoulder and was in hospital for 6 weeks where he had a quadruple bypass surgery. He recovered but didn’t feel right. That’s when we decided to move back to the UK for Alan’s health. In that time, Alan was in and out of hospital a few times with chest problems without real diagnosis. Viral infections were the usual suspect!
I don’t like to think too much about dates, as these aren’t anniversaries I like to remember. We first noticed Alan’s severe breathing problems when we ran for a flight. We both knew something wasn’t right and made a doctor’s appointment. Alan had a scan, pleural effusion and a biopsy, and within a month we got the diagnosis of mesothelioma.
Alan went through a rollercoaster of treatment. He had pleurodesis, pleurectomy with decortication and then chemotherapy. Chemotherapy led to 6 months of a non-existent life, with terrible side effects and constant tiredness. He took part in clinical trials and would always say that although he might not benefit from it, others would. At times they made the cancer shrink, but then it would grow again. Then it all went downhill.
My beautiful husband passed away after battling mesothelioma for over 4 years.
When you feel down, you don’t want to fight
During all this, I was Alan’s full-time carer. It was incredibly difficult – my husband became my patient. When I held his hand, it wasn’t purely out of love, it was to make sure he was steady. When I would see him stop on the stairs to catch his breath, I pretended not to notice, because I didn’t want him to see how scared I was!
Alan couldn’t run around or kick a ball with our son, something he was desperate to do. Alan did everything to put on a brave face to spare our son the details of sickness, tiredness, pain and everything else associated with the disease.
This disease took away any certainty - we didn’t know what was around the corner.
Watching Alan slip away was heart-breaking. This disease took away any certainty - we didn’t know what was around the corner.
In my opinion the depression was one of the worst parts, which doctors often overlooked. It needed a bit of convincing for them to pay attention to his depression, and even then, a pill can’t fix such complex problems. I believe cancer patients should be seen by other specialists as well as oncologists and surgeons. When you’re down, you don’t want to fight. We were both scared, but he had me by his side telling him ‘we can do this, I’m here’. I’m grieving now, but I know I’ll learn to live with it. I can see a future. What about Alan? What future did he see?
You do everything in your power for the person you love
I’m a dentist, so I’d heard of mesothelioma before Alan was diagnosed. My medical knowledge meant Alan relied on me to make a lot of the decisions and I can only hope I made the right ones. I was always researching, exploring new treatments, and Alan was always willing to try out new things. He fought to stay with us.
Lives are changed because of diagnoses, and people should be given more time for the explanation they deserve.
When people sit in my dentist’s chair, I don’t feel their pain or worry. I don’t know what it’s like for them, and in the same way, I don’t know exactly what Alan was going through. When you’re in those doctors’ appointments, there’s so little time to get a proper explanation of what is happening, let alone to get your head around it and ask questions.
I think it’s important to remember that patients are people, and not just a statistic. Lives are changed because of diagnoses, and people should be given more time for the explanation they deserve. We were so lucky to have had knowledgeable and caring doctors and nurses involved in Alan’s care, but they were all short of time.
We made the decision to not let cancer become our life, Alan used to say: ‘cancer is in my life, but it’s not my life’ and I cherish the many happy memories we have.
I hope that by sharing Alan’s story, I’ll help to raise awareness of the dangers of asbestos. Who would have known 30 or 40 years ago that exposure would have led to this? We need to challenge the government to do more to help those affected, and we need more research to find better treatments and a cure.
Right now, there's no cure for this deadly disease. But you can help change this. We've spent over £8.6 million on mesothelioma research but there's still such a long way to go. Will you make a donation and help us find a cure?
Do you have a story to tell? It could be about your lung condition, a friend or relative you know who lives with one, or how caring for them impacts your life. We'd love to hear what you've got to say!
This information is for people who have been diagnosed with mesothelioma, their friends, families and carers, and for people who want to know more about the condition.
5 reasons to support mesothelioma research
Penny explains why we need more funding for mesothelioma research.