An interview with Katie and Will

by | Feb 19, 2024 | My story

We spoke to Katie and Will about their experiences with retinoblastoma and shared interest in performing musically. 

Hi, my name is Katie, and I am 19. I had retinoblastoma when I was 8 and had to have my right eye removed. Back in July, I put on a concert to raise money for CHECT as well as awareness of retinoblastoma. It was a huge success, and one of the most special parts was singing a vocal quartet with Will, another Rb survivor who I met through CHECT’s teenage meet-up days. We hit it off straight away (we must have been about 15 at the time) as we discovered a shared interest in music, although I am sure there will always be a rivalry- can a singer and a violinist really get along?! As we’ve grown older, we have attended more CHECT events and somewhere along the way, realised that we could communicate outside of these once-a-year meet ups. Since then, we have been to each other’s birthday parties; attended concerts and finally sung together in the concert in July.


What was it like singing together?

Katie: It truly was a special experience singing together, as, for me, music has always been an important way to express my emotions and a way to escape during difficult times. To be able to share that with Will, who has had such similar experiences to me, really touched my heart and made me so grateful for the support I get both from CHECT and from playing music.


Will: Singing in the concert with Katie was an amazing experience! It was quite surreal to realise that both of us had come from battling cancer to performing some wonderful music together, to what I’d say was a very high standard too. It was also so heart-warming to see the whole concert which Katie had organised come together in the end. She put in so much hard work, and it really paid off- it’s definitely inspired me, and I’m sure many others, to get involved with and to hopefully one day plan my own event such as a concert for charity.


What do you think the concert would have meant to your younger selves?

Katie: I think for me it would prove to me that really anything is possible and give me the confidence that my artificial eye will never hold me back and that I could use my experience in a really positive way, as raising awareness and helping other young children and families has always been really important to me.


Will: I don’t think my younger self would have ever expected to be doing something like that. To be able to think how far I’ve come to be able to take part in concerts alone, on top of helping to give a little back to CHECT after all they did to help Katie, myself, and many others, would have certainly made my younger self feel immensely proud.


Has retinoblastoma had any impact on your relationship with music?

Katie: For me, music is a really special space and a chance to express myself when emotions become more complicated. But it is also a space where having one eye truly doesn’t matter and when in a group of musicians all that matters is the ability to connect with the music and the technical ability of the instrument, and that has always been very refreshing for me. Of course, there have been some challenges in the past, as at some points I have found communication between other players during a performance more difficult to pick up on, however, I have always found ways around this, not to mention the fact that it is wonderful to have a supportive community of friends within any activity you love. At the end of the day, words from a past conductor will always stick with me: “no matter what changes in your life, good or bad, music will always be there’.


Will: Retinoblastoma has definitely impacted my relationship with music in positive and negative ways. Of course, there were the annoyances when I was younger of dealing with the importance of sight in choirs and orchestras, but fortunately, experience has led me to adapt to my greatly reduced peripheral vision. Playing and performing music has always been a large part of my life, as I’ve grown up around a family of musicians, but I feel that going through experiences such as retinoblastoma has deepened and strengthened my emotional connection to music and other aspects of my life. Performing music, especially singing, is all about truly expressing yourself and who you are. For me, this has meant coming to terms with and accepting every part of myself, including my prosthetic eye. While of course this is an ongoing struggle for me, performance has definitely built up my self-confidence, allowing me to put my true self out into the world. Without music in my life, I wouldn’t be the person I am today, but if I didn’t go through the experience of retinoblastoma, I certainly wouldn’t be the musician and performer I am today either!


What is it like being friends with someone else with Rb?

Katie: The only way I can describe it is like family. I think the fact that we are united by the same experiences, issues and challenges means that it doesn’t matter how long we haven’t seen each other for, we are always up for anything and there for each other. We don’t talk about our experiences that much, but it is so nice knowing there is someone to turn to if I have a question or just need someone who will understand, especially as we both navigate university life away from home!


Will: The word I would use here is comforting. Having someone who has been through the same experience as me here has been so helpful, as while we may not talk about retinoblastoma all the time, I think that we both feel like ourselves around each other in this regard. That being said, whenever I’ve needed to talk about anything retinoblastoma related, however small or large the matter of conversation is, Katie has always been my go-to. I’m so lucky to have someone like Katie as a friend who just completely understands that side of me! Moreover, I think we’re both so fortunate that we have music in common to bond over too.


What has been the most challenging thing about having had retinoblastoma for you?

Katie: Overcoming the mental block of “this is hard because of my eye”- for me that always upset more than whatever I was actually finding hard. I have come to realise that sometimes I just need to take more time and my eye won’t stop me from doing anything. I think the other thing that I have struggled with in the past is feeling isolated due to the rarity of retinoblastoma (Rb), and I particularly found this difficult during the first years of secondary school, when I was finding my feet in a newly expanded world. I also started to feel like that a few months ago as I started university, however, this time round I knew that it was normal and had the wonderful support of Will, CHECT and my other friends. For me, talking about it with my friends (RB and non-RB) has always helped me feel understood and less alone and I am so grateful for their support in listening to me!


Will: I think the most challenging side of having retinoblastoma is its effects mentally on you. I’m fortunate in the fact that I had retinoblastoma at a young age of 4, where I really didn’t think much of it at the time. However, growing up with a prosthetic eye has always consciously or sub-consciously played on my mind. Feeling like you stand out and are different in a room of other people (whether people notice my prosthetic or not) has always led me to want to try and fit in with others, and for a while, I really struggled with accepting my prosthetic eye as part of myself. Yet over the years, with the support of some very close friends, I’ve learnt to see it in a far more positive light. Of course, the other side shows its physical challenges too. I’ve always loved playing sports, especially football and cricket, which both require hand-eye coordination. With little ‘real’ depth perception, learning to improve at these sports at the same rate as others has certainly proved challenging. It still hasn’t put me off doing sports at all though, and in some ways, I love to embrace the challenge of being a little behind everyone else in this regard!


What achievement are you most proud of?

Katie: Probably getting into medical school- it is something I have wanted for as long as I can remember, and I worked really hard for it.


Will: Getting into university has to be my proudest achievement! I’m so grateful to be able to be studying a course which I enjoy so much, and all the hard work in school has certainly paid off. I can’t wait to see what I’m going to end up doing with my degree in the future- Geography could really lead me down any path.


What advice would you give other young people who have had Rb?

Katie: You can achieve anything you want. There is always a way to do it, even if you have more to work through or find a different path, you can achieve any goal you set. I have never seen a group of people with a better work ethic than the retinoblastoma gang! I also think it’s important to be aware that having retinoblastoma, whatever your treatment was, will affect you differently at different stages in life (physically and mentally). It’s ok if suddenly everything seems to come to the surface again, or your artificial eye suddenly becomes irritated. There will always be people around to support you with that, whether they are from CHECT, doctors or others with similar experiences. That is something I definitely feel so grateful for having Will as a friend, as he has really helped make some challenging things a lot easier.


Will: The first thing that I’d say is never let anything stop you from achieving your dreams. Having retinoblastoma has of course been a set back in life, but I’m a strong believer of the idea that if you love something, you shouldn’t let anything or anyone tell you that you can’t do it. Also, never be afraid to reach out to talk to someone about your experience of retinoblastoma. I don’t think I realised until recently how much of an effect its had on my life, and that can be tough to deal with. CHECT are so good at offering extra support and just some chats, and I’m very lucky to also have Katie to talk to about my experience. Finally, don’t be afraid to ask for extra help too! Be confident in voicing how you feel or about what extra support you might need related to retinoblastoma – for me, it was as simple as small things like using my own music stand in an orchestra when I was younger, but even the smallest of things can make the world of difference.


Would you recommend CHECT’s teen and young adult meet ups?

Katie: Definitely! I have made so many friends, and even if you are scared to start with (I definitely was!) everyone is so friendly and supportive, not to mention you get to do some pretty cool things.


Will: Absolutely! They’re great fun in general for a day out, and you’ll never quite know who you’ll meet at the end of the day- that’s how I met Katie after all, alongside many other amazing people too!


If you’d like to attend a future CHECT event, check our events page for news on our next event.

If Katie and Will’s story has sparked inspiration for your own fundraising ideas, get in touch with our expert Fundraising team via fundraising@chect.org.uk or call on 020 7377 5578. We’d love to chat through your ideas and how we can support you. If you’re seeking more of a personal challenge, explore the exciting events we’ve got lined up for the year on our CHECT website here: https://chect.org.uk/other-ways-to-help/events/

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