To the next one
This is for you, the next young person told they have Cancer, unfortunately, there will be more, from someone that survived, I want you to know a few things I learnt during my treatment and in the years since.
You won’t understand everything straight away:
Whether your 15, 18 or 22, you won’t understand everything you’re told. You will probably struggle to get your head round the words “You have Cancer,” no matter which way the consultant approaches it it’ll take some time. Remember you don’t have to ask all the questions straight away, you’ll be confused, scared, probably unsure of what to expect and you’ll have questions but they may not come until you’ve left that initial consultation, jot them down and be sure to ask them next time. I’d advise writing down anything you’re not sure about and asking your consultant, nurse or support worker when you have chance.
This is your journey, no one can tell you how to deal with it:
Yes, 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 your treatment plan, prognosis or diagnosis, it’s your journey and 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 alot…shock, fear, confusion, anger…that’s ok, all of those things are normal, a normal response to an abnormal situation. Don’t try to conform to what the people around you or even you think you should be feeling or doing, you have to do what’s best for you during this time, if that is 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 that’s 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 at least trying to get out the house every couple of days, even just for a coffee, 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, at times you will probably 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, 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 alot 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 jewelry, 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 it makes me unique and it will you 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 anymore, 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 if’s:
Let’s talk about the what if…the one thing most people are reluctant to discuss with you, your family and 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’s not working? I’m not going to sugarcoat it, it’s a possibility and I’d always be the first person to tell you to stay positive, to 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’m going to 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. The important thing to know is 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 but try writing down your concerns or talking to a fellow cancer patient that’s been through it, believe me they will have had those thoughts.
One of the best things I ever did sounds slightly crazy and really depressing but it actually wasn’t, it was…a weight lifted I think, it put my mind at ease about the what ifs. That was to write down everything I would want at my funeral if I hadn’t made it, I did this with a close friend who I’d met during treatment, she did the same. We’d talked alot about the what ifs…what might be next and decided to write down what we wanted, 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…with not wanting 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, or at a support group or on the internet there is going to be a time during your journey that you feel totally alone. Although everyone seems to hear about childhood and young adult Cancer is 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’m a survivor 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 clue 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, that didn’t know what it was like to be stuck in a hospital room while their friends were out at the cinema. It’s natural to miss the person you were and all the things you did before Cancer.
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, 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 the things that long term, once you try to get back into normal life, they will be the things you might struggle with, 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 that’s also something that can be hard for people to understand so can make you feel even more alone.
You see, you grow up fast but in alot 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 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 with 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 that have been through Cancer, 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 that all of 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 that, they’d 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 experience to push you forward. Alot 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 alot 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 people just yet, I want to achieve those things on my own, I started mine while I was on treatment and have added to it over the years, it doesn’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 help with this one!)
- Go on holiday alone.
- Go to a beach party (this was so much fun!)
- Go to the top of a Volcano.
- Be there for my sister when she had a baby. (She’s always wanted one!)
- 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.
- Sail (this was a recent one that I wanted to accomplish after I had long term effects to deal with, thanks to the Ellen MacArthur Cancer Trust for making this happen.)
- Find a way to improve the way Cancer is handled for young people in the future. (This was important to me after my experience and I’ve been able to achieve it thanks to CLIC Sargent.)
Above from L- R: At the top of a volcano, with my niece and sailing.
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.
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, I want you to know that 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 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.
Cancer will change your life and your future but it can open your eyes to possibilities you never imagined, to goals you never realised you needed and to what it means to create memories worth treasuring.
For support and information take a look at the following:
CLIC Sargent (A range of support including practical, emotional and financial for children, young people and their families.) www.clicsargent.org.uk/
Teenage Cancer Trust (Supports young people with Cancer.) www.teenagecancertrust.org
Teens Unite (Support for young people including events, opportunities to meet others and build on life skills and confidence.) http://teensunitefightingcancer.org/
Macmillan Cancer Support http://www.macmillan.org.uk
Ellen MacArthur Cancer Trust (Rebuilding young people’s confidence through sailing.) www.ellenmacarthurcancertrust.org