They Said I Was Lucky… But Then the Pain Set In
I was told when I was diagnosed by a consultant that I was lucky. That I would never know that I had cancer. That I would feel better than ever before. All I had to do was to take some pills every day for the rest of my life.
No, my cancer wouldn’t kill me. Yes, I could still drink. Yes, I could still have babies. What was there to worry about?
So when the pain started, it knocked me sideways. It wasn’t expected. I hadn’t been warned. I was young. I wouldn’t get any side effects. I was lucky!
Apparently, I wasn't so lucky
But no. That consultant didn’t think I would be a sensitive responder and unable to deal with a full dose. No, that consultant didn’t see me as me. Only a 22-year-old on paper would be absolutely fine. No, that consultant didn’t listen to me. Ever.
So, a few weeks after diagnosis, I was a very ill person on the sofa at home. With only 90 minutes of pain relief a day. Two, hot, 45-minute baths. One to get me out of bed. One to get me back into bed. I refused to be an ill person in bed. So, I managed to get onto the sofa downstairs every day. And phoned my consultant every day saying how much I hurt.
No, you don’t. Take some painkillers.
I ended up on Dihydrocodeine and ibuprofen every 2 hours, day and night, because every time I moved in my sleep, the pain woke me up.
But, I wasn’t in pain. I couldn’t be in pain according to that consultant.
When someone finally listens
It became too much at the end of April, I think. I had only been on treatment for a few months. But, I was beyond miserable. I wanted to die to be out of the pain. I phoned the hospital once again. I was crying so much down the phone I couldn’t get words out. My sister took the phone from me and spoke to the on-call hematologist whilst I calmed down enough to be able to speak.
I don’t know who it was, what their name was... I was never able to thank them. That wonderful man listened to me and told me to stop taking the Imatinib. He couldn’t believe I was still on it. Told me never to take it again. Without him, God knows what would have happened.
That is probably the worst of what has happened. Well, other stuff hasn’t been great. But, when you have been on treatment for over 11 years, there will always be some not good stuff.
I’ve had 4 consultants, and hope I always have my current one. I know that one day our paths will part, and at this moment in time, I genuinely don’t know what I will do without them. I also tell them this. They laugh and say I will be fine…
Do you worry about relapse?