“I went to the GP that morning with non-specific symptoms and I was admitted to hospital that night with a confirmed diagnosis of Chronic Myeloid Leukaemia”
Katie Ruane, Trustee of Cancer on Board
22nd November 2018
On Friday 19th January 2007 I received a phone call that would change everything. I went to the GP that morning with non-specific symptoms including lack of concentration, weight loss, fatigue and I had nearly fainted twice that week. I was sent for a blood test and was told to come back in a week. I was admitted to hospital that night with a confirmed diagnosis of Chronic Myeloid Leukaemia. I was 22. To say this was a very unexpected shock is an understatement!
Living with a chronic blood cancer for nearly 12 years has had its ups and downs. The first positive is I’ve never had to consider dying or plan a ‘bucket list’. My cancer was never going to and will never kill me. This is still the case, as a new oral chemotherapy seems to have removed my need for a ‘quality of life’ stem cell transplant which, until two months ago, was highly likely. I have also never lost my hair so I’m ‘user friendly!’ Now the debilitating chronic fatigue, a side effect of treatment, also appears to have gone. The biggest down-side is my ‘chemo plague’ (spots) that comes and goes.
Whilst I haven’t allowed this invisible disease to take over and dominate my life completely, I have been hindered. However, since starting my latest treatment I don’t think I have ever felt this good on treatment. I’m 3 weeks away from being 34, and I have my life back for the first time in 12 years.
Another positive was being introduced to a twitter account – Cancer On Board – around 3 years ago. I had used twitter for ‘brain vomit’ and constantly complained about needing a seat while using public transport, but never being offered one as it didn’t look needed. I don’t look like a cancer patient, even though I’m on oral chemotherapy treatment for life. There’s no end date in sight for me. I look completely healthy. However, until 10 weeks ago, I couldn’t really stand for more than 30 minutes and would lean against things for support after a minute or so. I’d worry about getting on the tube and needing a seat, as I felt like I had been punched in the face from exhaustion. I’d frequently cry on the phone calling home before getting on the tube because I didn’t know how I was going to find the energy, knowing I wouldn’t be offered a seat; that is until I got my Cancer On Board badge.
From that moment my life changed so much for the better. I stopped worrying about diving into a seat and being glared at for not moving when someone who looked like they should have it stood near me. I stopped feeling guilty for not standing up. I could tell everyone I needed a seat without saying anything. People would even say kind things to me like wish me luck or squeeze my arm as they got off of the tube.
I haven’t worn my badges since starting my latest treatment (Asciminib), except for a couple of times. I really hope this continues.