Lack of communication is terrible I think in the cancer world. I feel like I've had a lot of trouble with getting the right advice. 

I felt that everything was explained, but it's kind of always different when you're going through it. Some of the information just lost. 

It surprised me how much relied on seeing the same people, know you and understand what you've been through.

It's as if I was talking to myself. Nobody was actually listening.

What we want is education. Education is what people need.

I was diagnosed with stage four lung cancer and ALK+ three years ago. 

I had a routine CT scan, the day after I was told that I had, lung cancer, which was mind blowing. To be quite honest. 

How can I get it? I'm like in my 30s.

Why me? never smoked. and I'd never had any health conditions or any before.

If there can be any good news, it's a ALK+ lung cancer and it's therefore something that we can treat.

I was given information, from the drug company with all the side effects.

The pharmacist, she would help me with counteracting the side effects. The oncologist didn't know of the side effects, so I found the pharmacist and the nurses, more useful than the oncologist.

What if the healthcare team should have done better is communicate, the information to me, give me a better breakdown. Information on side effects. 

There's also, an element of the bedside manner. We've had an experience where we've had basically exactly the same information given by two doctors…I was crying in the morning appointment and I went and saw my professor, And I came out feeling better.

I was approached by a certain consultant who looked at my notes and came to me and said I need to issue you with a do not resuscitate order. You've got lung cancer, You’re not going to survive any resuscitation anyway. And he's put his arm around my shoulder and touched me on the back and said, well you've had six years of survival, just accept it?

Things for me changed when one particular nurse, came into play. She asked me about me really. She took special care to explain things to me. She made me less angry about the whole situation.

What’s been really sweet about my professor is he actually cares about me as a person. He said to me when he was looking at my scans, he actually felt his heart skip a beat because he was worried for me.

My cancer specialist nurse has been incredible. Always there and no problem is ever silly or not important enough.

My oncologist doctor is absolutely superb. When we finally met physically, I was with like ten members of my family and he was bombarded with questions for like two hours. And he answered it with so much patience and so much grace.

I think the biggest support to me as family and friends like really rallied round.

My wife, who is, amazing. Helps me out on the not so great days. 

This whole thing is kind really brought us together. We got married last year and he’s been caring for me ever since, yeah.

My advice to someone recently diagnosed with ALK+, would be it's a roller coaster.

Take whatever help you can get.

Join the support networks. Just to be able to feel that you're not alone.

Get to know your oncologist. You will get more from it and you will be able to understand things more.

Don't panic. Don't be afraid to ask questions. Don't be afraid to push for better.

Help is there don't be afraid to ask for help.

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