Next week, I am coming up to two years in remission. For me and so many of the friends I have made since entering this world it is a strange time. Often people view anniverseys,birthdays, points in your life as a positive think a time to reflect on how far you have come from this point last year.
But the difference I have to deal with, at least at the moment is yes it is a chance to look back. It is also a reminder that although it might feel like life is long in the grand scheme of recovery from being diagnosed with cancer, you or in this case I am only half way there to being able to get your life back. Remission is remission and all clear is all clear, they are not the same thing. It has surprised me how many people I have to remind of that fact. So if you are prepared to follow me down this rabit hole of self indulgence I have tried to split it into three sections. Where I am now from where I was, how have I got there and finally a broader point about being in the adult world, and having to adjust to their perception of you in your twenties. Whilst at the same time having to feel like being the only person in the room, who has your experience.
The point of this, is to try and explain to you primarily where I am at because I can and should only claim to speak for me. But to maybe give you a slightly better understanding about the difficulties other young people in there 20’s have to deal with when you are diagnosed.
Where am I now from where I was
Today I am a 23 year old with a job. I am aware of how fortunate, and to some extent, I unfortunately, really buck the trend for to many of my friends. At the same time I have more titles than I care to admit at parties because I am really not interesting. Yet at the same time, I am someone every four months has to walk into a hospital knowing I might not be walking out to the life I walked into it with. I am someone who has had to deal with, transitioning to a new hospital which took seven months for me to get settled in the system. I am someone who, I am realising nearly every day, am viewed by others as pretty much having it all. I am someone who has to deal with work colleagues, who assumed I do all the work that I do the charities etc, simply because I am 23 and wanted something to do with my free time.
Since moving to London it has brought me back into contact with a lot of people who knew me from before cancer. From that I often get one of two reactions from people. Either and this is my least favourite one he’s gone through cancer and nothing has changed or its had no impact on me. However the one thing this reminds me, is that when ever people say that to me, it means I need to be honest with them about how everything has changed for me. So that the next person they know who has cancer, they don’t hold them on the pedestal they view me. Or I get the people who only want to talk about my health. Now again I know people mean well. However, as I hope the above shows, the last two years in remission has meant people either ignoring the concept of cancer impacting me. Or it’s people who don’t give me the decency of an identity outside of my condition. The balance between the two is something I have struggle with basically since this day two years ago.
How have I got there
In last the last two years, I had to deal with not getting the opportunity to graduate with my under grad class. I didn’t get my ending. I have had to move full time back in with my parents studying, and meeting new people who have never meet what was the old me. I have had to work out what is “me”, am I cancer guy, am I going to pretend it didnt happen, or am I going to be some where in between. Is there an in between, that I really have not worked out. Twice I have had to go through this cycle of not working out who am I go to be in this place. You also have the joys of working out what role cancer has in that for me. Something which has also been challenging for me, is dealing with a world which primarily discriminates against me because I am dyslexic, but I also have to remind that yes I have gone through cancer. To some extent that has been the most challenging about it is accepting, that in order to make change to make my life easier I need to accept the fact I am going to have to be the one who works from the inside. A) to make my life easier, but B) to try and make the world for the person who comes into its next with my life experience a little easier. Growing up in a world where I felt like I could rely on adults to get me through realising, that now you are going to have to be that adult not only for yourself but the next generation.
What does that take away from me that others have
The really point of this piece, is to briefly really explain the impact cancer has in the long term. When you operate in a world which doesn’t really care about you, especially so soon after your experience, you don’t have a choice. Either make people care or you suffer in silence. The other aspect you have to deal with, is operating in a world with “adults” who view you as nothing more than a 23 year old with “so much to learn”.
One example I want to highlight is around your twenties. I now work in an environment, with many people in there 30’s and 40’s who talk to me about what they where doing at my age. Travelling here, travelling their you get the picture. What cancer takes from you is that feeling of freedom just at the time you are meant to be able to take advantage of it. I never planned to be living in London. When I was 20 I planned for this year to have that travelling experience when I am 23. But I don’t have that choice, because I can no longer just pack my bags and go. A countries health system, has to be my prime focus. Now this will hopefully only be something which stops me until I am 25. But another area where choice has been taken away from me relates I took this job, not because I choice, it was because I either took a job which was offered to me or continue to stay at home with my parents.
As I look back, on the last two years. I am only now beginning to understand how that has changed for me mentally. I am slowly being able to understand, how it has changed my physically. But the most difficult thing of all, is that realise the the choice you had spent most of your teens waiting for, your twenties straight out of uni has gone. I am, and have been for the last two months have only now begun grieving for the life I wanted and planned for. I am probably not quite done yet.