I’m Fay, a 23 year old Hodgkin’s Lymphoma survivor; I underwent treatment as a teenager after a late diagnosis and have been dealing with the long term impact of cancer and its treatment since. CLIC Sargent found that one of the top priorities for young adult cancer patients and survivors was the financial impact of cancer. This isn’t surprising given how expensive it can get, the costs quickly mount up. You can read more about this here on their website.
During my treatment my parents ha d to continuously worry about finances because they both worked full time to support the family and having a child with cancer means time off work, we were lucky that other members of our family would come and sit at the hospital with me for hours so my mum and dad could go to work or spend time with my sister. As a young person it sometimes made me feel guilty that my parents had to take time away from work to be with me, cancer wasn’t my fault but I still feel responsible for its impact.
The financial impact has continued since my treatment, working full time and saving for your future is hard enough for young people but I have to deal with constant fatigue, physical limitations, having to explain my long term effects to employers and taking weeks at a time off work when my mobility is reduced and I’m too tired to leave the house.
I received disability benefits until just after the end of my treatment and was then told I wasn’t eligible anymore because I could do too much for myself, I’m now reapplying but it’s a humiliating process when you try your hardest to work full time and take care of your own finances, unfortunately for people like me who have had cancer or still deal with its impact it’s just not that easy. The system for applying for disability benefits such as PIP is a bit of a minefield, you need a manual just to tell you where to start.
I was never very interested in voting to be honest, it just didn’t seem very relevant to me but as I’ve become more actively involved in some of the policy work CLIC Sargent have been up to I see that even sometimes the smallest of voices can make a difference and why shouldn’t this be any different in the running of our country? If enough young people vote and have their say then at least we will have had a chance to decide our future and the future of our children. If we never vote we’ll never know will we?
I’ve decided to vote for the first time because I’ve always tried to raise awareness of the issues affecting young people with cancer and I want my voice no matter how small, to make a difference, one of the simplest ways to do that is by voting. I want to make sure the process from diagnosis to long term impact is better for the next generation of young cancer patients and the only way to do this is by speaking up. Whoever you decide to vote for on the 8th June, just make sure you’re having your say about the things that affect you.
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.
Being happy isn’t always a matter of having the nicest house, the job that pays the most money or having that family. For some people it is those things but it’s not for everyone. I’m not sure what it is for me yet, we all have those dreams in school and college, that life plan and no matter how much people say “everyone reaches milestones at their own time” it doesn’t change the fact there is still society’s expectation of what you should do with your life, what you should have by the time your 25 or at least the idea of a “successful” life or career. It places alot of unrealistic expectations on young people and for me I find that it places expectations on those of us who had their dream screwed up by their health.
Slimming World, those two words everyone hears and thinks “diet plan.” It’s not a diet plan as such, more a healthy lifestyle change but let’s all be honest, whether it’s a healthy lifestyle change or a diet plan…it’s damn hard and really, who doesn’t want to go for a bowl of chips over a side salad?
I’ve discussed my weight loss progress here before and those that know me will know I’ve been attempting this Slimming World thing for about a year and a half now, whilst I’m some of the way there having lost more than two stone I’m nowhere near where I set out to be…yet I find myself losing the will to even try. Getting my head in the game seems to be the biggest challenge.
A couple of weeks ago I spent a day with the Executive Team and the Trustees of CLIC Sargent, as a young adult volunteer for the charity we were giving them a bit of an insight into what life was like for a young cancer patient these days…or actually, any young person, we focused alot on social media and to be honest, I realised alot more than I expected to. It was something that was said about the long term impact of having cancer as a young person, it’s hard at any age but in later life often your life is established, you’ve followed the path you chose and you’ve built an education, career, family even. As a young adult, cancer comes along and changes your future and I hadn’t thought about it until I talked a little about my long term conditions because of my treatment, the way my closest friends are all survivors or still undergoing treatment, all of those things are a part of my cancer journey, I deal with the impact of cancer every day and we all paint the rose colored picture of our lives on social media. I know I do at times, post a happy, smiling selfie when I’m so tired I could sleep for days, mostly to take my mind off being so exhausted but actually it’s about time we started acknowledging those things and maybe it’s about time we all started celebrating what we have dealt with.
Do you ever look around you and wonder why on earth you can’t quite fit? I know I have this festive season. It took me a long time to realise that being me was ok, that being not quite so open, not quite so social was actually ok and is how I am happiest, the trouble I have at family gatherings and sometimes in general is that none of those traits about me are always seen as positive, through no one’s fault, it’s simply that we’re different.
It’s a strange relationship I have with weight loss, I always thought I was terrible at it, but yesterday I was awarded my two and a half stone loss award…two and a half stone?! I know crazy right? I guess maybe I’m better at it than I thought.
Taking the first step is hard but regret is harder.
One of the most frustrating things for me about having put on so much weight was the fact that I always felt like I couldn’t change it. Alot of my weight came from my cancer treatment, the steroids, the not being able to dance anymore, not being able to walk any further than the end of the street without feeling like I might collapse from the pain. So you can probably see why I struggled to figure out how to lose weight, even after I’d finished my treatment all those years ago it left me with a joint condition so really, I’ve never been able to get back to the same level of fitness.