Thursday, 26 January 2017
Declining a Trial and Leaving Hospital
10 years ago today I was suddenly told I could go home in the afternoon. After being told I could potentially be in hospital for months, this was a huge shock. And I didn't feel ready to leave.
I knew the nurses. Got to hang out with Doctor Dave (who I know got into a lot of trouble from the nurses because of this!). George my drip kept me company. I had friends come and see me all the time. I also had time on my own to just be. An en-suite room. TV, DVD player and a little fridge. It was warm. Mugs of tea appeared. Why would I want to leave?! It was my little bubble of safety.
My consultant wanted me to take part in a trial. Put huge amounts of pressure on me to take part in this trial. I was young. Rare. Unusual. Interesting.
I was never told I could drop out of the trial if I wanted to. Critical knowledge to have been told.
Every day my consultant would come in and ask me if I had decided yet. I wanted my parents to decide. They couldn't. I was an adult. It was my decision. Even though I very much felt like a child again.
I was told about the trial. (Bearing in mind I was reading History of Art. I knew nothing about how clinic trials worked. I didn't have the knowledge I have now). Normal treatment that I was going to get anyway- chemotherapy pills. Double the amount of normal treatment. Injecting myself with a drug.
I asked if I could pick the option. No I couldn't.
Being told I had cancer and then 3 days later being told I might have to inject myself with drugs was just too much. So after debating for 5 days and for feeling so incredibly guilty for saying no (the nurses were amazing at helping me and telling me it didn't matter if I said no) I was then kicked out of hospital by my consultant. Who never liked me from that moment. My parents witnessed the change in their behaviour and attitude towards me.
Not only did the thought of injecting myself put me off (ironically I had to 8 months later to have eggs frozen) but I asked what happened if I started to show side effects on the double dose option. They said they would drop me down to normal dose until I was ok and then increase the dose again.
Thank fuck I said no. The standard dose was too much for me. I was so unbelievably intolerant to it and my consultant ignored me and my pain and how I felt. Because. Research said I wouldn't feel like that.
I dread to think how I would have been on the trial on double dose or injecting interferon with them ignoring me and how I was feeling.
I have a lot of anger towards that fucking awful egotistical consultant who couldn't have given two flying fucks about me. All they cared about was that fucking trial.
So today. 10 years ago. A rather bewildered and let's face it, scared, me was unceremoniously kicked out of my warm bubble of safety after being told the day before I could be there for months, back to the cold reality of 'normal life'.
And remember Katherine, you are so lucky for being diagnosed with CML. Your life will be exactly the same and even better than it was before! You will never know you were diagnosed or taking chemotherapy daily....
What an utter twat.
With love and hope and thank god they are now retired