By Brian Cassidy
“To all newly diagnosed (and existing) mesothelioma sufferers I would say ‘do not go into your own bubble, there is lots of support out there – nurses, doctors, consultants, psychologists, and other sufferers who have been there and done that, who will give you advice, help, support and a listening ear.’
“I was given a maximum of 6-9 months to live five and a half years ago. My concern is how many people take that prognosis as a given, walk away and don’t do anything else. You’ve got to give people hope. Instead of [doctors] saying bluntly, ‘you’ve got this cancer and you’re going to die within 6-9 months’, they should be saying that ‘you’ve got this cancer called mesothelioma through exposure/working with asbestos, we have had some people dying within a year but there are others who have lived for 10, 12 years, it depends on at which stage you are, the treatment you have, etc, etc…’ and go from there.
“Hope is very important. Not panicking is also important when you initially receive that diagnosis. You feel on your own, but trust me, there is lots of support out there.
“That’s why I’m quite active on social media. I’ll post updates on how I’m doing and respond to people who have just been diagnosed and offer my experience/advice because when I was diagnosed, I was given nothing except a death sentence. I had to find out myself through organisations such as Mesothelioma UK and HASAG, and it was only through my own investigations and belligerence that I was able to get on the immunotherapy trial at the Royal Marsden – I had to really push for that.
“My local hospice is brilliant. There might be a general perception about them being all about palliative end of life, but they give me great advice and psychological help. Being able to talk about how I’m doing/feeling is so important. It’s very difficult to continually talk to your family all the time about your illness and how you feel. Not that you want to hide it from them, but they’re in fear over what’s going to happen to you.
“I have a lovely family and friends, and when I see them, I’m truly happy, I’m smiling and positive, but when they’ve all gone, I sit down and fall asleep because I’m totally exhausted. But you can’t keep putting all your troubles and woes on them all of the time because it wears them down more than it does you. That’s why I talk to external people. They’ve heard it before, they know and they can give good advice.
“There must be a cure for this out there. Maybe it won’t be in my lifetime but I will continue to assist research whenever I can to ensure that this dreadful disease is eradicated for good someday.”
