Not only is the 21st of April World AML Awareness Day but it’s also the day that I was given my life changing diagnosis. Four years have now passed since that day, the day the life I’d been living ended and another began. I’ve lived three lives, the first before diagnosis, the second during my 6 months of treatment and the third post treatment because I’ve been three different people during each one.
Emotionally & psychologically AML has had a significant effect on me;
There’s been several different stages of adjustment and even now I’m not sure I will fully be at peace with it. The best way to describe is that I am constantly evolving, it is like someone pressed reset on my whole being that day and I’m continually rebooting.
Now I live with major uncertainty because relapse is a reality for those of us in remission, indeed AML only has a 15% long term survival rate so I’ve had to come to terms with this hanging over me.
Health is something you take for granted, the comfort blanket we all carry around with us… not feeling the coldness it leaves until we don’t have it around us anymore
My mind-set has completely changed and the impact of this has meant I just don’t fully fit into the life I was living in before, only partly. I can’t plan the future like most, can’t relate to the issues others find important, can’t function in the same way as many of my peers.
I now seek positive minds, like minds & those who only want to thrive alongside me; One of the things my diagnosis has given me is enlightenment and the confidence to live a purposeful life. There are so many opportunities I missed in the past due to outside influences and looking back they were only thinking of themselves, so now I say no when I need to.
Physically AML has had a massive impact on my body;
Every single day I have pain in my joints and muscles and the chronic fatigue makes me feel like I’m constantly thigh deep in treacle. Every time I feel like I am making progress I get knocked back by illness or become so exhausted I can’t function.
I suppose I shouldn’t be surprised that my body feels so battered, but this is something no one tells you and naively I didn’t think would last. Treatment for AML is one of the harshest of all cancer treatments, the consent form I had to sign included mortality, organ damage and secondary cancers. Indeed I am aware of many patients developing secondary cancers and living with serious debilitating after effects. The after effects are overwhelming, long lasting and not something that can be rectified with a bit of rest and recuperation. Here is why (there are several issues involved);
- The bone marrow has been damaged by the disease and treatment so doesn’t work as efficiently as a normal persons does, it never recovers either.
- Months spent in hospital, with treatment so harsh that patients inevitably spend time in intensive care and isolation leads to excessive muscle wastage (I was unable to even feed myself)
- In my case the nausea and vomiting was so extreme that my weight loss, lack of fluid and calorie intake meant more medical intervention, a tube through my nose and into my stomach and IV fluids. Consequently the lack of nutritional intake for such a long time had a long term effect on my body. I still have issues with food 5 years on
- Unfortunately chemotherapy not only attacks the cancer cells but also healthy cells and has a cumulative effect in the body therefore taking at least 3 years to be broken down after treatment.
- Chemotherapy has a detrimental effect on the brain inhibiting the way it processes information, this has improved for me but is still and issue and in the beginning it was very extreme. I couldn’t speak sometimes, couldn’t understand questions and my memory was terrible. This is something many cancer patients talk about, often referred to as ‘chemo brain’. It affects the way your brain processes information and decision making.
My Life now
I now spend much of my time helping others because paying it forward has become extremely important to me and becoming involved with charity Blood Cancer UK, Know AML, Macmillan and the Blood and Transplant Research Unit at University College London has given me the right place to channel it. For all those who unlike me, did not get this second chance, who I know would have given anything just to be able to see another day, week, month or year I will make sure I earn my place as a survivor.
I am happy to say that now I am in a much better place despite living in remission, my mindset is such that I practice self care, believe in myself, my judgement and self worth. My life is calmer, happier and I am certainly fulfilled.
I never used to be so confident in my own mind, I used to let myself be influenced by others, usually the negative types. I know my worth, that I have integrity and am a good person and I have a lot to contribute. This mindset is incredibly liberating and has given me an inner strength that I never knew I had.
I’ve had the privilege of meeting and become friends with some truly inspiring and people who remind me constantly of the true meaning of life, kindness and selflessness. I’ve been the recipient of wonderful acts of generosity and thoughtfulness which has renewed my faith in humanity. In many ways my heart is full…
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