Patient Perspective – An update from lockdown

Vickie is back with her latest blog, where she discusses having to unfortunately go back on her medication, and how she’s coping during these unprecedented times.

As many of you will remember, I came off my medication after being on them for 10 years. My doctor advised me to come off them in November 2019, and they would keep an eye on me by having a lot more blood tests done and more consultations. I was very nervous to come off them as I have taken my medication for 10 years and they are part of my life now. I came off them all nervous, but everything was fine to start with. I could feel the side effects being different, but I put up with them as I had to give it a chance as my tablets have been in my system for 10 years.

All was going well—like I said, a few side effects, but nothing to worry about. Then I had a consultation with my haematologist, and she didn’t have good news. She said my bloods were slightly rising and I would have to go back on medication. I was shocked and confused. I hadn’t really been off my medication for that long—three months. She asked if I wanted to try a completely new tablet as I used to take imatinib. I had quite a few side effects on that and she advised perhaps trying something else. So, I said why not, and I am now on dasatinib. Again, I have to wait for these to get into my system and see what side effects are to come. I was very disappointed that I had to go back on medication as it was nice to not have to remember to take my tablets, to not worry about the side effects. However, this is not the case.

Isolating is my next subject. Having to stay in for 12 weeks, not allowed out at all. To be told you are a vulnerable person is hard to accept. I want to be a normal person, but with this coronavirus it really makes you think twice about what you have. It brings back how it really is important for us to stay away from the outside world, even though I miss my walks with my family and dog, taking them to the park and seeing my family. It is hard to stay at home and keep active. I have been helping my husband decorate my son’s bedroom, so that’s kept us busy. I love gardening, so I have spent time in my back-garden planting, weeding, sitting outside. My kids keep me entertained as well. They make dances up, we do art.

It’s a scary world we live in and when this does come to an end, I don’t think I will be the same again, especially with my health. I will take it more seriously and stay away from anyone who is ill. I’ll keep a hand sanitiser with me in my bag to use. I will always be on my guard now. Don’t get me wrong, I will live a great life, but my CML has put things into perspective now. We have blood cancer, something to take extremely seriously.

Staying isolated means you can perhaps try and do things you have never done before, like baking a cake, doing that meal you have never tried before. Who cares if you get it wrong? Try again! Practice makes perfect. Catch up on movies and box sets. Don’t stay in and become so bored that you won’t do anything at all. As a sufferer of depression and anxiety, I know how it can feel, being in that dark tunnel you think you can’t get out of. We have to try, no matter how hard life becomes. We can do it. From one fellow leukaemia sufferer to another, take extra care of yourself. Don’t let it beat you. Have fun at home. I send my love and extra hugs at this dark, hard time in life.

Mindfulness

Mindfulness is a psychological, self-help therapy involving being aware moment-to-moment of your subjective consciousness that can be developed using meditational practices.

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