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06
Feb
My Medication Mayhem

written by

Leukaemia Care, Charity

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By Venessa Taylor

 

I was diagnosed with acute lymphoblastic leukaemia (ALL) on the 13th of February 2015.

Last week I started a new cycle of treatment called maintenance, which I will be on for the next two years. This is because I actually need a stem cell donor but sadly, in this whole big world of ours, there isn’t another person on the register that matches my uniqueness.

When I started the cycle I was given chemotherapy intravenously and two types of chemo tablets to take. The nurse explained how and when to take them and my daughter who was with me wrote it down and gave it to me. Sorted, or so I thought. Once I got home I didn’t think about it - it was all in my head just like all my other medication - so I started taking them as I thought I had been instructed.

Nearly a week later I noticed that I didn’t have enough tablets to get me through to my next appointment. When I looked at the bottle in big bold letters it said ‘take three daily’. I don’t know why, but I had been taking four. I didn’t panic; I called the helpline and they told me not to worry, not to take any more for a couple of days and asked how I was feeling. The registrar wasn’t concerned so I wasn’t concerned. However, a couple of days later my consultant was concerned and I had to go back to the hospital to have my blood checked etc. Fortunately, everything was fine.

However, mentally I was not fine. I was so upset with myself, I could even say angry with myself. How could I have made such an error and what if the outcome had been different? How could I have been so careless and put myself at risk? I was really beating myself up.

This reminded me of an episode I had a few months ago. I had experienced an episode of Methotrexate-induced encephalopathy. The way I can describe this is I lost two days of my life. I don’t recall what happened.  My family described my behaviour as me not being myself and I was admitted to hospital, where it took a week for the doctors to work out what was wrong with me.  The consultants referred to it as me suffering from confusion.

When this episode started, my family didn’t know what tablets I had taken or should be taking and when. I had lots, many I wasn’t taking anymore and somewhere the prescription had changed.  In this world of leukaemia things can change so quickly. Therefore, it is crucial to keep a visible, up-to-date log of current meds. Not just for your benefit but for the benefit of your loved ones. I do now.

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