Life with Leukaemia: A family’s story of navigating the emotional, physical and financial challenges of living with blood cancer, by Amy Atkinson
If you’re new to my column then welcome and here’s a little backstory…
I started writing and speaking out about our cancer journey after my husband’s blood cancer diagnosis, more than two years ago, because I so desperately wanted to stop another family going through what we had to.
For nearly two years I watched the man I love wither away in front of me. I stayed up at night listening to him in pain, I watched him lose weight and become a shadow of the person I knew and loved.
We must have rung the GP more than 30 times. We took him to A&E twice, we moved GPs for a second opinion. Nearly two years passed of us fighting for a diagnosis – some of that time during the pandemic – until Joel was diagnosed with blood cancer in a state of emergency.
I want to take this opportunity to say that no one knows your own body like you. You know what’s normal for your body and you shouldn’t stop asking for help until you get the treatment and help you need to feel better.
Since starting this column I have spoken to people who have read my words and gone to their GPs and got a diagnosis of blood cancer. I know people who have used my words as a tool to navigate and inform themselves after a loved one has been diagnosed with cancer.
I feel an overwhelming need, after walking the corridors of cancer wards hand in hand with my husband for nearly three years now, to normalise talking about cancer. It will save lives and it will reduce the social isolation of those fighting it. I think some people shy away from talking about cancer, scared they will say the wrong thing. But people need to be free to talk about cancer as when you have it, or someone you love has it, it takes up a lot of your life. It shouldn’t be an awkward topic.
My husband remains in remission and my husband remains on chemotherapy as a preventative measure. And I remain in disbelief, in constant disbelief, that we have survived these couple of years. I am grateful for every second we have as a family, but sometimes I put so much pressure on the moment. Like it needs to be marked and magical because there was a time when I thought we wouldn’t have these days together.
There are a lot of emotions around watching a loved one live with cancer due to the fear of relapse, the uncertainty. Recently I stopped writing for a few weeks, I had a break from social media and made space for myself to try to process what we have been through.
Living through a pandemic these past few years has been a rough ride for a lot of us in one way or another. With a cost-of-living crisis now to navigate, I think a lot of people in the community feel the struggles, the anxiety and mental health implications of life in 2023.
I think being there for one another is so important, now more than ever. Something as simple as smiling at someone passing in the street can be so powerful.
Sometimes I feel so isolated by our experiences. I’m 30 years old and I don’t have any friends that have walked the path I have, no one that can normalise or rationalise my feelings. People are carrying around their thoughts and feelings, but when things get heavy we need the world to remind us we aren’t alone. We need the world to make the load a little lighter.
I write about life with leukaemia, I write to inform people of the symptoms of blood cancer because it will save lives, I write about the amazing charities that help those diagnosed with cancer and those caring for them, I write about where to go for financial help whilst battling cancer.
But I’ve come to realise that I write this column because I need to make something positive come from our cancer journey. Writing creates a space for me to make some good come out of all the bad cancer has brought into our day-to-day lives. If reading my words inspires someone to book an appointment to donate blood or stem cells or donate to a cancer charity, then the column has served its purpose.
When it comes to cancer, knowledge is key, awareness is power and funding research into beating it will create a brighter future for us all.
As always, sending light and love to those in the community whose lives have been affected by cancer.
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