After years of struggling to receive a diagnosis for metastatic cancer, Tom receives Marie Curie hospice care at home. Here he talks about the difference it's made to his pain and wellbeing.
It started when I was a security guard working in Aberthaw. I'd been there for about a year, and I started getting more and more breathless. Just walking would make me breathless. I kept going to the doctors, but they were certain it was asthma.
“It took years for someone to investigate”
The breathlessness went on from 2018 to 2020. And all the while, my life plans fell apart. I was dependent on charity and on my family to take care of me because I couldn't work. Without a diagnosis, I couldn't sign up for benefits. There was universal credit, but I couldn't look for work because I could barely leave the house. It was horrific.
One morning my GP called me because I missed an appointment. She told me to come over right away because I sounded so bad over the phone.
The GP listened to my chest and said: "Your lungs don't seem to be working properly." Two years after my first appointment, my GP sent me for an X-ray, and it came back with shadows and everything. I finally got an official diagnosis: metastatic cancer.
By that point, it was too late to get treatment, so I was straight into the hands of Marie Curie for support and pain management.
“Having Marie Curie support means having someone who's in your corner”
Before Marie Curie, the doctor's idea of pain management was "give him morphine, give him morphine". It's pain relief, but living your life on it is no existence whatsoever. It takes a toll on the body. The doctor doesn't know about the specialist medication Marie Curie does.
Getting transferred into the care of Marie Curie and getting competent pain medication that doesn't make you hallucinate and doesn't make you itch all the time was a major relief.
Marie Curie makes sure my quality of life is the best that it can be for the state that I'm in. Taking Gabapentin has been the biggest saving grace of the last few years, to manage the nerve pain. Most of the pain I'm getting is nerve pain, so Gabapentin is a wonder drug for that. It still works after three years, which I'm chuffed with. The medication they give me means I can get out of the house, see my friends and my family and maintain something of a normal life.
Spending time with my family, going out for lunch, doing the mundane, normal stuff really helps me. My family – my mum, sisters, nieces and nephew –they're always in and out. They make things a lot easier, and I'd be miserable if I didn't have them in my life.
The Marie Curie Nurses visit me every couple of months, and I get phone calls every other week. I always felt like medical professionals were judgemental towards me, but with Marie Curie I have real, no-judgement support. The nurses are people who want to look at things from your perspective.
They support my mum as well, which is a big help. That's my main concern: the wear and tear on my mum, and my family's lifestyle. It's nice to know there's somewhere for them to go for support as well.
“I felt lots of anger, but you can't do anything about the past”
Anger was my primary driving force for the first year after I was diagnosed. Going out and meeting friends and family, enjoying what life you do have, helps. The anger is still there, but you learn to control it and get on with things.
You can't do anything about the past. I'm happy now that I don't have to die in agony. That's the best I can hope for, and I'll take it. Dying slowly and painfully is no fun, but I know I have people in my corner, like Marie Curie, who will help me and that makes it easier.
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