A Medical Anomaly

I should already be dead. I am a medical anomaly.

Today my doctor said to me, “You are the only Multiple Myeloma patient I know of who has survived this long without medical treatment. It is unheard of.”

I am preparing for my next transfusion in a few day’s time. The decision to have regular, 8-weekly blood transfusions was one we reached together almost 6 years ago.

The donor blood doesn’t stop the cancer in my bone marrow from developing but it tops up my haemoglobin which dies off much faster than a healthy person. So far the transfusions have helped prevent organ damage happening. But the exhaustion and pain never cease. My body is always playing catch up after blood and my levels are rarely normal.

When I took the gamble on myself eight years ago, I didn’t decide to be a Maverick because I had a plan. I had no f-ing idea what I was doing after being diagnosed with an incurable bone marrow cancer. I just knew not having medical guarantees were not worth the gamble. Live five years of hell, in and out of hospital and destroy my body with chemo and drugs, or live five years my way.

A study last year by Oxford University found that lifestyle has a greater impact on health than genetics.

Eating well (avoiding ultra processed foods, takeaways, and refined sugar), improving your lifestyle (abstaining from smoking, vaping, drinking alcohol, drugs) and prioritising sleep and movement daily will shift many potential medical issues. It will indirectly also make you fitter, stronger and of course boost endorphins and make you look great. But like all things you need consistency. It isn’t an opt-in when you feel like it. And humans are lazy. Most people will make excuses why not to do something than find reasons to do it.

We never appreciate the greatest gift the vast majority of us are born with, our health. We set off on a path to destroy it for pure unadulterated pleasure seeking. At least I did.

A functioning alcoholic for more than 15 years I screwed up my DNA on a cellular level. Once the cancer switch is flicked on, it stays on. But I have accepted it is part of me now and that has erased all fear. Living with cancer or dying as a result of it doesn’t scare me.

Many of you won’t realise your internal damage until old age and by then it will be too late, because you will find reasons to complain and blame the doctors for not fixing your mistakes. People are always looking to shift accountability.

I was given an opportunity in 2017 – change or die. And that is really how I see my illness now. A bittersweet reality check.

It has been the hardest challenge of my life living with this disease and I am so tired. Drained from stupid, ignorant comments from people who make no effort to understand the difficulty I live with; and drained from battling with my mind and body which hurts more as the years go on. But I am not giving up.

In my experience real compassion is not common. Those who have witnessed loved ones suffer or have a first-hand experience of long term illness have it, yes, but everyone else are heartless c***s. They are the ones who spout “well-meaning” comments without engaging their brain. Who are oblivious to the cruelty their words cause because they are clueless.

Jean Paul Sartre said, “Hell is other people,”. Such wisdom!

Today at hospital we decided to check the cancer levels. I haven’t run tests in 2 years, because I think sometimes not knowing can be better than stressing yourself out. But I don’t feel well and I want to know on a cellular level how much disease burden I am now carrying. And to be prepared for anything unforeseen.

My blood results are pretty consistent and doc reiterated today “your cancer is not aggressive. Keep doing what you’re doing,”.

I won’t know my results for a week or maybe longer. Lots of lab work. They took so much of my blood today – ugh!

Regardless of the outcome I will strive to stuff as many more adventures into my life as I can. This year is looking packed again….watch this space.

If you are sick or know someone else sick, please pass this on. It is never too late to start to change. You owe it to yourself. Sitting on your ass and feeling sorry for yourself isn’t going to help you. Clean up your life. Be patient, it takes time, but keep putting one foot in front of the other. Move forward.

Look at it as a second chance rather than the finale. You have nothing else to lose, so pull your finger out!