5 years on the Cancer Journey…..
So this is my second go at this article as my first attempt was accidentally deleted. But given it was running over 10 minutes a read, I hopefully can now create something that is a little bit more readable.
Today marks 5 years since I was given the news, which has changed my life. For those new to my blog at the age of 21 I was diagnosed with testicular cancer in my final year of undergraduate. What I will try to do below is just focus on 5 lessons and things that I have learnt which might be interesting to you, but hopefully makes you think about the issue of cancer slightly differently.
Before I get into my lessons, I just kind of want to outline exactly how much I have been able to pack into the last 5 years,, just in case this wasn’t self-aggrandizing enough. I got a masters, I have had three jobs and really if I look back on my plan for myself at 20, I feel proud to say I have pretty much nailed it. I have been a “youth advocate”, to a major national charity, our NHS and a major cross European Charity on how can we make the experience of young people having to deal with major health conditions easier. To becoming a “ambassador” what ever that means, going to events to raise money for CLIC Sargent at events ranging from local school fundraiser to large corporate dinners. I have learnt to love a big check me.
Since I have joined the civil service I have had 5 jobs. When I joined the civil service at 23 what I found was an organisation which didnt represent the fact cancer impacts peoples live. I have created cancer networks in two government department and have supported the growth of the current cross government network. In my world at work, as I come to 5 years on from diagnosis I take pride in the fact people who are diagnosed after me won’t have to ask if the Department they work for, has a place that they could come to for support. But instead asks how can that be better.
Personally I have moved and left the big smoke. I have got to meet and know some amazing people and I think I have had something close to the experience I though I would be having in my twenties when I dreamt of the freedoms of adult hood when I was 18.
I would also be remissed to not thank(mainly because I will hear about it), my family and friends I have made along the way without who personal and financial support would not have got me to were I am today. But also partners who have been in life the last 5 years. Without them and helped me to learn exactly who I am, but also had to deal with me processing a lot of the mental barriers that I had built up off the back of my treatment.
- 2016/17 “the are you okay year”
I am going to keep this short but at least for me, if you have a conversation or meet someone just after they have gone through a major life threatening illness. Let us be the one to bring up how we are doing .Or at least if you do want to bring it up, maybe bring it up as the third or forth point of conversation not the first. When you have had your identity removed by surviving, help us to at least feel like you view us as a normal human you knew before and not just this diseased vessel.
2. 2017/18 The what do I do next year
For me something that I think has helped keep my mental health mildly good, has been the fact I have always kept myself busy. I have been able to do that because of the priviledged situation I found myself in after my degree. I was able to stay with my parents, to study a master, I then got a job in London which has kept me busy the last few years.
So I guess my point here, is that if you have that person in your life who was in a similar position to me. Take the time to help them to work out what is and could be ahead of them.
3. 2018/19 the you most be so wise year
Being in your early twenties entering the working world, you have to get a pretty thick skin to being looked down on as having no understanding of the world.
But something I often got from people at work when I talked about my experience, is this assumption that I was this wise young man. Who must have this amazing zen temperament. Yes I was 23 at the time of this conversation, so how do you think my temperament was holding up. My ability to deal with the crisis of a deadline, is not going to be dimished by me remembering how grateful I am to be alive.
I guess my point here, is you probably think what I am asking for is to having both ways. But really all I am asking for, and people you know that might be in a similar situation to me is to be treated like a normal human being. I want to learn what I don’t know, but just because I look like i’m 11 that doesnt mean my lived experience will have been exactly what yours has been since you finished school.
4. 2019/20 the you have to know when to fold them
When I entered the world of youth advocacy, I did so because I really thought I would be able to use my experience to make a difference for the next set of young people who would be following me after that.
When I entered the world at 21/22, i thought I had a good few years before I hit the dreaded number of 25 and you are no longer “a youth”. But as the years went on, I learnt to appreciate that, despite getting my photo in the guardian (does great things for your ego) you have to remember that you are no one special. By that I mean you appreciate that you are not going to be that person who will be able to change the world you thought you would be able to. However you should be able to take some pride in what have you been able to make forward.
I am proud that hopefully for the current generation of youth advocates, they are not trying to get the system to answer the same questions that you asked it.
But I think linked to that you also have to recognise when you and the people that you entered this world in are probably going to part of what you are folding in. I hope those of you reading this who I have meet over the years, know that I hope you still see me a friend but losing the kind of relationship you had before is hard.
You realise in the life path that you are the one going left when everyone else is going right, even if you are 100% sure you are making the right decision doesnt make the feeling of lonliness any easier.
5. 2020/2021 so this is me
I entered the world of youth advocacy appreciating that I should only have this position, if I am able to use my recent experience to make the system better. As I have got older and have been fortunate enough for my health to have stayed stable my experience has become less relevant to knowing the problems with the system. So many organisations that are making the world of cancer different, should be supporting those who’s experiences change the system as it is. Not what it was, and some times recognising you are what it was has to be best for the bigger picture.
As such, I have drifted out of the system to just being someone like everyone else in their twenties just trying to make to work out the kind of questions you all are. Do I enjoy my work where do I want to live, etc. I would be lying if I pretended I didnt miss getting invite to similar events like the NHS 70th anniversary. I do miss not seeing my lovely face in the Guardian.
Being a youth advocate for me has meant the system giving you this elevated sense of importance only for the system to spit you out at the ripe old age of 25. Know I have got to work out how to do this whole adulting things, I am so grateful to be in that position.
PS…..
If you have a few extra quid there are probably 4 organizations without whos support I would not have been able to pull off have of the above.
I mean outside of the social work support which saw me through not only trying to move on, but also moving to London the platform and the amazing people who work for this charity which puts young people at the centre of how they try to make their lives easier I would not be were I am today.
When I moved to London, and my “youth” support disappeared on me, these two great charities through the events they run in London and around the country to help the forgotten group of young adults trying to work out how to live, when the world around you just expects you to be an adult like the rest of us.
