10 Years Since I Graduated from Edinburgh
10 years ago I had just graduated from the University of Edinburgh with my ‘fake degree’. A general arts degree. It means nothing. My diagnosis and having to take a year out, a very unhelpful academic tutor, and not wanting to do a year at university without my friends meant I didn’t leave with my full history of art degree. I’m probably still angry about that. Time helps. I’m not proud of that piece of paper. My parents were. Are. I suppose it takes a determined child to carry on at Uni over 400 miles away from home after a cancer diagnosis. But I had been told I was lucky. I wouldn’t know that anything was wrong with me. That life would be better than it had been before.
But I did know. It made an impact very quickly. My skin told me first and then the pain.
Setting goals and then changing goals
I asked fairly soon after my diagnosis what blood test results I needed to come off treatment and was told 0.00% with the leukaemia rate (PCR test) that is done at most, if not all, appointments, and to maintain that result for at least 6 months and then they would think about taking me off treatment.
I have lost that goal over time. That focus. That drive. I was so positive I would get those results. I was young. The meds would work. Why wouldn’t it happen for me?
11 and a half years later, and 10 years since graduating and leaving Edinburgh for the last time as a resident, I am in major molecular response. And have been for a long time. Can’t remember when I got that first all-important 0 after the decimal point. It took longer than they thought it would. I think it took nearly a year and a half. But that then shows how many leukaemic cells were in my body. How ill I was when I was diagnosed. How serious it actually was. Yes. My bone marrow doesn’t make new leukaemic cells anymore. But the longest I have been allowed off treatment is 6 weeks. Within 6 weeks, I come out of the ‘safe zone’. I lose the magic 0.0% and the worry of my bone marrow ‘waking up’ becomes a serious concern. And if that happens, would I still be responsive to the treatment? It’s a gamble I’m willing to take, but sadly my consultant isn’t. And I’m not brave enough to just do it without their consent and see what happens.
Coming to terms with never being treatment free
So will I ever be treatment free? I suspect not. And I don’t know how this makes me feel. In a way it allows me to relax about it all. To succumb and just allow. Maybe I’ve been so focused on it, too focused on it, used up too much energy on it. I don’t want to be on meds for the rest of my life. I don’t want to be a drain on the NHS. I don’t want things to be dictated to me by my treatment rather than me being allowed to decide it.
So I feel that this is another thing I’ve had to let go of.
And does this mean I’ve given up? Given up on myself? Given up on hope? I really hope not.
I’m so different now than the girl who started at Edinburgh all those years ago. But hopefully, I haven’t given up on her and all that she wanted to be.
How long did it take to be properly diagnosed?