Fay, hailing from the UK, has written this beautiful piece for the Youth Cancer Europe blog which we’re very proud to host. Entitled “To The Next One”, Fay’s blog is a letter written for the next young person to be diagnosed or currently going through cancer treatment. It addresses the questions, fears and different emotions that young people living with cancer face following their diagnoses, offering advice and perspective from a fellow former patient that shows that you are indeed not alone in your fight. A thoroughly recommended read not only for patients and survivors, but also for those who wish to gain a little more understanding of a patient’s journey. Fay, thank you so very much for your collaboration.
To The Next One
This is to the next one, the next young person told they have cancer. From someone that survived, I want you to know a few things I worked out during my treatment and in the years since.
You won’t understand everything straight away:
Whether you’re 15, 18, 22 or 28, you won’t understand everything you’re told. To begin with, you will probably struggle to get your head around those words, no matter which way the consultant approaches it. It will take some time.
You’ll be confused, scared, probably unsure of what to expect and you’ll also have many questions, even if they don’t come to you until you’ve left that first consultation. You don’t have to remember them straight away; write down anything you’re not sure about and ask your consultant, nurse or support worker when you next have a chance.
This is your journey, no one can tell you how to deal with it.
Sure, it’s not what you wanted, expected or planned for and it’s rubbish. Unfortunately for people like you and me, we have to deal with it and no matter what your treatment plan, prognosis or diagnosis, it’s your journey. It won’t be the same as the person next to you with exactly the same diagnosis.
You’ll find as you start treatment or other procedures, you’ll go through a lot… shock, fear, confusion, anger… that’s ok. All of these are a normal response to an abnormal situation.
Don’t try to conform to what the people around you, or even yourself think you should be feeling or doing; you have to do what’s best for you during this time. If that means to ignore it when you’re not in the hospital and carry on going to work, school, college or university then go for it. If it means staying in bed on some days because you don’t know how to face the world just yet… that’s ok too. Though I’d advise to at least try to get out the house every couple of days, even just for a coffee or to see a friend. Try not to shut yourself away for too long.
You’ll go through stages at different times and no reaction is wrong.
Side effects are rubbish and you will probably at times hate them more than you hate cancer.
Some of the most noticeable side effects you might have to deal with are hair loss, weight loss or gain and the dreaded sickness. For many cancer patients, hair loss is inevitable; when we live in a world where growing up has become so much about the perfect selfie, losing your hair can be devastating, and you’ll likely cry (yes boys, I’m looking at you too, it’s just as traumatising for many males as it is for females.)
Just know… it doesn’t have to be the worst thing ever. Wigs are amazing nowadays, so good even that you often can’t tell – and you can have some fun with them too! Ever fancied trying bright red hair? Rainbow? I’m sure there’s a wig for all of those wacky styles you always wanted to try. Losing your hair will knock your confidence in a lot of ways. Try making a list of all the other features you like about yourself or the things you can do that make you feel better about how you look. On my list were my eyes. I also like to wear jewellery, especially bold necklaces; it just gives me that boost.
Weight gain and loss can also impact how you feel about your body image during treatment; just know that as much as you might not like how you look right now, you’re beautiful, handsome, whatever word it is that makes you feel good: you’re that. Your looks will change – for some dramatically, for others not so much. This can include scars too; I kind of see my scars as a collection of what I’ve overcome. Yes, I look in the mirror and sometimes wish they weren’t there, but they make me unique and they’ll make you unique too.
It will be hard and you’ll want to give up at times, you’ll want to pull out the drip, throw away the tablets and give in – I get it. You don’t want to feel sick or be in pain anymore. It takes strength, a strength you’re not sure you have but it’s in there somewhere. You can do this even if you have to take it a day at a time.
The What Ifs:
Let’s talk about the “what ifs”. The one thing most people are reluctant to discuss with you, your family or friends might shy away from the subject, but you will have those thoughts. What if I don’t make it? What if I go to my next scan and the treatment isn’t working? I’m not going to sugarcoat it, it’s a possibility and I would always be the first person to tell you to stay positive and keep your head up. But I know it’s something you’re going to think about, because I did and I’ve seen the reality of that situation play out in so many people I know.
There is no easy solution, so what I say to you is discuss it; talk about your fears, worries, wonderings… talk to your consultant, to any support workers you might have, to a charity – you’re not going to be the first person to wonder and you won’t be the last either. The important thing to know is that you’re not on your own; there are people you can chat to about it if you don’t feel like you can with your family. I only have a little practical advice on this because it totally differs from person to person, but try writing down your concerns or talking to a fellow cancer patient that’s been through it. Believe me, they would have also had those thoughts.
One of the best things I ever did (this may sound slightly crazy and really depressing, but it really wasn’t) was… a weight lifted I think, it put my mind at ease about the what ifs. It was to write down everything I would want at my funeral if I didn’t make it. I did this with a close friend who I’d met during treatment, she did the same. We’d talked a lot about the what ifs and what might be next, and decided to discuss what we might want. I’m blessed that I never had to hand that to my family, I never had to let anyone else but her see it. She did… but in a weird way, losing her was made easier for me knowing that everything she’d talked about wanting, everything we shared… she got to have that. She got to be remembered exactly how she wanted. So if you are struggling with the what ifs and don’t want to worry your family or friends, try writing down what you want. You might feel better knowing you’ve thought about it just in case.
Please remember it’s a hundred percent ok to be scared, to be terrified. Let yourself have those moments or they’ll build up. What you’re going through is scary but you’re not alone.
Which brings me onto my next point…
You’ll feel like you’re the only one:
Whether you meet people on the ward, at a support group or on the internet, there is going to be a time during your journey when you’ll feel totally alone. Although everyone seems to hear about childhood and young adult cancer, it’s actually not that common. It’s strange once you’re thrown into that world… after a while it feels so normal, but even now when new people find out I have experienced it they’re surprised, they have no idea about that world. You will have to face that, you’ll have to deal with your friends probably not having any idea what you’re going through, with them not understanding its impact and how much that journey will change you. You might not realise it at first but it will change you. You’ll grow up fast, you’ll have to face and think about decisions you may not have ever considered before… you’ll have to work out what your priorities are right now and you’ll find that you probably won’t go back to being the person you were before cancer. It’s ok to grieve for that person, the one that didn’t have to worry, who didn’t know what it was like to be stuck in a hospital room while their friends were out at the cinema.
It can be a hard change – you might hate it, but there are communities out there, little pockets of survivors, of other patients that will get it. They’ll know exactly what you’re going through without you saying a word.
Everyone’s journey is unique, but we all know what it’s like; the things you didn’t think would change but do. The friends may drop away at times because they can’t cope, or you might have to miss out on education for a year and feel left behind… it’s those things that no one tells you are going to change. Those are things that long term, once you try to get back into normal life, will be the ones you notice, and going into remission isn’t always the end of your journey. I realised that recently. You may have long-term impacts from your treatment; that’s all part of your journey too, and it’s something that can be hard for people to understand, so it can make you feel even more alone.
You see, you grow up fast but in a lot of ways you’re also held back from progressing like your peers. You can get through that. Make connections, find out if your hospital has a group you can attend to meet other young people with cancer. Reach out online; there are lots of us who blog or look for Facebook groups and national charities that create opportunities for you to meet others. Only do this when you feel ready – some patients don’t want to meet anyone else and want to carry on as normal; in my experience they do end up reaching out in the end, but it’s all about your preference. Just remember the support is out there, don’t be afraid to reach out for it; you might just find the very people you need.
You may have to deal with losing those people you meet:
You might meet people who are treated alongside you; you might reach out and you might have to deal with losing those people. Survivor’s guilt is a thing, and losing the people you meet and connect with is never easy. There’s isn’t a good way to deal with that. So why, you wonder, would you even bother reaching out?
The thing about us young people who have been through cancer, or are going through it… we’re a bit like a family. We connect on a level that you probably won’t find in many other situations. If you lose a friend, please try to remember all those things about having them there that made your journey easier; you were those things for them too, you made their journey easier just by being there, by being a friend and there’s no reason you can’t make the most out of every single day for the both of you. Being exposed to this situation as a teenager or young adult puts life in a very different perspective and that’s ok; your friend would want you to be happy, to do whatever it is you’ve always dreamed of and you don’t have to feel guilty for doing so. They would be right there next to you, supporting your dreams.
A different perspective can be an amazing thing
Yes, there are the downsides I’ve discussed and you might feel like you no longer see things the same way as the people around you. That’s good; it’d be boring if we were all the same… and you can use that as motivation; you can use your own experience to push yourself forward. A lot of people I know have had bucket lists, things they’ve wanted to do but never got the chance and are determined to. This kind of list can work in a lot of situations; during treatment, for those who are terminal and after treatment for survivors. I’ve seen it work for so many of my friends and it gives you a sense of accomplishment.
I have my own list, only two people have ever seen it because I don’t want to share it with anyone else just yet. I want to achieve those things on my own; I started my list while I was on treatment and have added to it over the years. They don’t have to be outlandish goals. It can be, dream as big as you want to but don’t feel any pressure; each item has to mean something to you… I’ll tell you some of the things I’ve ticked off mine:
- Going to prom (this was one of the first things on my list when I created it during my treatment)
- Seeing my sister go to her prom
- Gain some A-Levels
- Swim in a waterfall
- Visit 3 countries in a year (thanks to my cousin for the help with this one!)
- Go on holiday alone
- Go to a beach party (this was so much fun!)
- Support someone else through their treatment or long term journey (I’ve been lucky enough to do this more than once)
- Work a full-time job for at least a year
- Find a way to improve the way cancer is handled for young people in the future
- Go to University (started this September!)
You see, not all of those are big dreams; some were a little trickier for me. Full-time work seemed a million miles away at one point, and abseiling… well, that was always going to be a will I, won’t I moment but it was worth it. There are things I’m yet to tick off but have plans to, and things that I know I’ll get to one day. The point is, it’s a motivation. It’s all of the things that my eyes were opened to that I probably never would have thought about if I hadn’t had cancer; and the things that for other people seem so obvious, were big for me. Going to Prom when the year before I had no idea what my future held – that was important. It’s also an amazing way of looking back and seeing what you’ve accomplished. It just gives you that extra little thought on how special life is, and you won’t want to waste a second of it.
I just want to add a message to anyone reading this that may have been told there’s nothing more that can be done. I don’t know what that’s like, I’ve supported friends through it and I’ve seen the different ways they dealt with it. Please know that you’re not losing your battle. Cancer hasn’t won, you win every single day just by smiling, by interacting with your friends and family, by being yourself. Maybe cancer can change and shorten people’s futures, but it could never take away the person we are, the strength it takes to face that… and the lives you’ve touched. My best friend and the first person I lost to cancer used the saying: “It’s ok to cry but it’s even better to smile.” So smile and know that you’re loved, and when you don’t feel like you have any strength left, know that there is a community of us right there with you.
Lastly: you can do this. Whatever your diagnosis, whatever the consultant says about your future… you can do it, you can deal with it and come to terms with whatever you’re told. You won’t feel strong enough at times; you’ll want to scream, cry and hit something – that’s ok. Do it if it helps, then take a deep breath and find a way to channel those emotions, whether it’s talking, writing, drawing, reading, just immersing yourself in movies; do what you need to and never stop being proud of yourself for simply getting through the day.