Shane's story

In this short video Shane shares his story with us and tells us 'the sun will always shine tomorrow'

My name's Shane and I'm from Leeds, the best city in the world. Unfortunately, I was diagnosed with Adenoid Cystic Carcinoma of the Lacrimal Gland two years ago.

Can you describe your diagnosis and treatment?

It started with headaches, during the summer, a couple of years ago. I was treated for migraines initially, but it turned out to be Adenoid Cystic Carcinoma of the Lacrimal Gland and everything moved really fast after I was diagnosed.  Terrifying, is probably the best way I can put it, right at the beginning. But now, if I could look back and talk to myself when I was first diagnosed, I'd say, deep breaths, relax, nothing's going to happen overnight. You've got a lot more time to process stuff. I'm a worrier and I think about things all the time anyway.  I was researching everything, looking online, reading outdated information and scared myself to death. So I think, yeah, I wish I could go back in time because I wasted the last two years worrying far too much.

Luckily I had a good team.  My GP said to me I would have a scan 'just to be safe', and if you don't hear anything in two days there's nothing to worry about, and then two days later, sorry, the following morning, the doctor rang me. So I kind of knew something was going on. And then he says, there's a mass behind your eye. Could be anything. Sent me for tests. I had a surgical biopsy where they broke the temple and took a bit of the tumour.  Luckily the pathologist diagnosed it straight away. They removed my eye, did a loads of amazing stuff and gave me radiotherapy. So after that, it was sore for a little bit, but since then, everything's gone well.

How has life been since your treatment?

I'm two years out of treatment, they removed my eye, I had radiotherapy. I had gold standard of treatment as far as what you'd expect. When they did the pathology report from the biopsy, I was lucky to be diagnosed correctly the first time, which is often not the case for a lot of people with ACC who are misdiagnosed, which causes a lot of different issues. So I consider myself lucky that I'm in the position that I am in today. I don't know if I've got anything inside me right now because I have been checked for 12 months, but I'm going to hopefully be getting that done before Christmas and then. I just live one year at a time, the way you should do anyway, not stressed about stuff too much.

How have you coped with the changes in vision since your treatment?

One of the main reasons that I'd like to be used as an example on the videos to the new patients if they come to Salivary Gland cancer UK. Is the anybody who's looking at vision loss as part of the treatment of it, like my eye, it's by no way, shape or form as bad as you think it would be. Your brain adjust to the loss of one eye. You don't see a dark patch. All your vision comes through one eye and your brain compensates for the fact that your scope of vision. So I when people talk about peripheral vision, peripheral on my right, and I can even see my hand on my right hand side and I feel it's amazing, the way the way the brain adjust to it's fantastic.  I do building work and have had no complaints, and so I think, yeah, it's comforting to know that it's not as life changing as you think.

How has being part of Salivary Gland Cancer UK helped you?

Salivary gland cancer, I found after it was recommended to me through a friend who had ACC as well. The biggest thing that he's given me is a reliable source of information that's relevant to people living in Britain and the most up to date research.  I'd say the best part of it is the people that I've got in touch with, about 10 different people I'm in regular contact with now that I've never met before. Never. So, yes, it's a good shout.

What have you found helpful through your journey?

My two sisters come up trumps for me when I was first diagnosed. My sister, Vicky, she did a triathlon for me, and raised some money just to see me through and my other sister, Becky, she helped me out financially because she could. And it's not just the practical side of stuff. It's just like once you get a diagnosis like this, people tend to just pull together. I've got a friend who's recently been diagnosed himself, suffered throat cancer, and you just want to help, I mean, I think it's human nature. You just want to help.

The one piece of advice I could give people, please don't be stubborn and accept accept help that you offered because you're going to get offered a lot of it. And don't try and be a hero and take things on, the world, on yourself, because you don't get a trophy at the end of it and you need to accept help and acceptance, accept your situation and realize that you you've got lots of time to get through your initial treatment. It's not all dark clouds and what do they say 'the sun will always shine tomorrow'.