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Life with Leukaemia: 'Our daughter Isla’s first sports day was a day made of dreams... There have been days when I thought I wouldn’t have Joel by my side for these moments'



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A Bishop's Stortford family's story of navigating the emotional, physical and financial challenges of living with blood cancer, by Amy Gannon

Somehow it has been nearly a year since that fateful day Joel was diagnosed with leukaemia. I walked into our bedroom to wake him and he was blue.

We found out from his consultant over speaker phone on the way to hospital in the back of a blue-light ambulance that he had blood cancer.

Since then, time has turned elastic. It stretches and bends, and days, weeks, months blur into one. Somehow, we have been on this cancer journey for a year.

It made me think of those that have just been diagnosed or with a loved one that has been diagnosed.

In these early days, support is so important. Every appointment and hospital visit I attended was like a science lesson – I had to learn so quickly the medical jargon. We had to become knowledgeable about the complex science of blood cancer.

The charity Blood Cancer UK recently released a programme called This is Blood Cancer. If you are newly diagnosed I highly recommend watching it to get accurate information quickly. Or even if blood cancer isn’t in your life, it is always good to be informed about how people are affected and having to live their life.

Blood cancer is when something goes wrong with the production of blood cells. Over 40,000 people are diagnosed with it every year. There is so much less awareness of blood cancer, with half of adults in the UK saying they cannot name a single symptom of it.

I am so passionate about changing this and ensuring people are more aware of these symptoms. I want to approach local GP surgeries and healthcare settings to encourage them to display the symptoms graphic designed by the Indie which is included in my article every time.

I think if Joel and I had seen a poster of this nature our fight for a diagnosis wouldn’t have taken nearly two years.

Blood cancer symptoms (57728210)
Blood cancer symptoms (57728210)

There is more complexity in the symptoms of blood cancer than in some of the other cancers; for example, there’s not a particular ‘lump’ to look out for. Blood cancer displays a series of symptoms and the dots need to be joined. Earlier diagnosis brings people more treatment options which will ultimately save lives.

Blood cancer can affect anyone of ANY age – Joel was 30 when he was diagnosed. Often GPs think ‘You’re too young to have cancer’. This simply isn’t the case. Cancer does not discriminate.

In the last five years there have been outstanding breakthroughs in treatments as a result of research Blood Cancer UK has funded. Joel’s treatment is guided entirely by one of the most recent breakthroughs, MRD (minimal residual disease) testing. This enables doctors to test in such depth if any cancer cells remain after treatment and to plan next treatments for patients or, in some cases, highlights that treatment can stop as absolutely no cancerous cells are present.

Me and Joel at his liver biopsy appointment - results since have revealed he has suffered liver damage as a result of his chemotherapy
Me and Joel at his liver biopsy appointment - results since have revealed he has suffered liver damage as a result of his chemotherapy

The idea of prevention of blood cancer is on the horizon. Blood Cancer UK is working towards creating a prevention screen test for it after discovering that mutations that lead up to blood cancer can be present and tested for up to 10 years before the cancer develops. Research funded by the charity is so vital to enable more life-saving breakthroughs.

Fundraising is so important. The progress made in cancer treatment comes from research and very often this is funded by charities, by members of the public coming together to make a positive difference.

I remember when my friends told me they were going to fundraise for Blood Cancer UK. They did a karaoke marathon which raised nearly £3,000. This was such a boost to Joel and me. We felt so honoured that our journey had inspired those close to us to engage with a charity that is directly fighting the cancer Joel has.

For those on the outside unsure how to support a friend, colleague or family member going through this, fundraising for a charity shows solidarity and shows you really care. It provides a united feeling.

If you would like to organise a fundraiser, then please visit https://bloodcancer.org.uk/get-involved/fundraise-your-way/sign-up/. Additionally, I would love to help with fundraising locally – please contact me via the Indie on 01279 216515 or email letters@stortfordindie.co.uk.

Isla before her first sports day, where she won the egg and spoon race
Isla before her first sports day, where she won the egg and spoon race

Last week we were able to attend our five-year-old daughter Isla’s first sports day and see her win the egg and spoon race. It was a day made of dreams.

There have been days when I thought I wouldn’t have Joel by my side for these moments, when I’m screaming and cheering for my little girl (yes, I am that mum!).

We got away for the weekend again, to Norfolk to enjoy some quality family time.

Isla and Joel on the beach in Norfolk during some quality family time
Isla and Joel on the beach in Norfolk during some quality family time

Joel’s treatment has stopped. We took a phone call from his consultant at 9pm saying results showed Joel has developed liver damage from the chemotherapy. After a few sleepless nights and anger at yet another hurdle to overcome, the future looks a bit unclear once again.

We have adopted the attitude that every day together is precious. We try to list all the positives rather than drown in the negatives.

It’s important to take it a step at a time, to take life day by day – looking too far ahead just encourages the fear to mount.

For now, I cling to the hope for a breakthrough in gentler treatments. I pray for the day when we can fight cancer and win every time. And I continue to spread awareness of the symptoms of blood cancer in the hope no one has to wait in the pain my Joel was in for those years.

Blood cancer symptoms (57728210)
Blood cancer symptoms (57728210)

Useful links

Blood Cancer UK's programme which shines a light on blood cancer: https://bloodcancer.org.uk/news/this-is-blood-cancer/.

Anyone interested in organising their own fundraising can sign up for a free pack at https://bloodcancer.org.uk/get-involved/fundraise-your-way/sign-up/ or get involved in an event or challenges at https://bloodcancer.org.uk/get-involved/fundraising-events-and-challenges/.

For further information on breakthroughs see 13 blood cancer research projects to receive our funding | Blood Cancer UK.



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