A year of living with leukaemia

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

Sitting down to write this week’s article, I struggled to think of an update on our situation. Since I last wrote, not much has changed for us.

I paused and thought how grateful I am of that fact. To have had Joel home for all this time, to see Isla with her daddy every day and to have him feeling better within himself is such a blessing.

Somehow, without realising, we have learnt to live alongside Joel’s cancer, it is part of our life and after a year it has become part of our natural routine.

Monitoring appointments every Tuesday, bone marrow biopsies every three months, consultant meetings and regular bloods.

Masks in crowded places, endless use of antibacterial gel and hospital-strength cleaning products enable us to give Joel the best chance at avoiding infection and staying with us in the family home. We have slowly acclimatised to this strange new way of life.

It is amazing how quickly you can get used to what was once so life-shattering.

Cancer. It affects so many of us in the community. Isla understands that Daddy has cancer and asks lots of questions about it. Mainly "Is Daddy better yet? When will Daddy not have to go to all these appointments?". But I am glad she can speak about her dad’s health without getting upset.

The game really changes when you open up and talk about cancer. Speaking to others and writing about our experience is so helpful for our mental health.

In the early days we never shared, we kept our journey private. Almost not wanting to scare people off with the intense news of cancer. But sharing and speaking about it really helps – it helps to accept the situation. It helps others to feel comfortable to ask questions and understand more about the condition and the needs of the person fighting cancer.

Never feel like you have to hide your condition or illness. Never be scared to speak about the truth of your life. Real friends and good people won’t be anything other than accepting and supportive of you for opening up.

September is getting closer – Blood Cancer Awareness Month. It has filled me with a renewed desire to spread awareness of the symptoms and how blood cancer presents itself.

The thing we struggle to accept the most as a family is managing the anger and frustration at how long it took for Joel to get a diagnosis. We are turning this frustration into making a positive difference. Raising funds to enable cancer charities to spread awareness, to brighten the futures of those fighting blood cancer and enable people to get help and diagnosis more quickly.

Joel’s cousins, Sophie and Dom, and auntie Steph are training to run the Royal Parks Half Marathon in October. They have raised £625 so far for Leukaemia UK. Go to www.justgiving.com and search for 'Sophie Tyler'. Joel’s friend George has signed up to run the Brighton Marathon for Blood Cancer UK next April. We wish them all the best of luck. It gives us a huge boost to know we are surrounded and supported by people willing to dedicate their time to such fantastic and important causes.

The countdown to our wedding has begun. We get married on Sunday (August 14) and I couldn't be more excited to be Joel’s wife. I am so proud of all the steps he has taken (quite literally after learning to walk again during his time in intensive care) to get us to a place where we can both say "I do". The next time I write will be as a married woman – I think we have definitely got the 'in sickness and in health' part of the vows covered!

Little ways YOU can help to make a BIG difference in the fight against blood cancer...

• There is a shortage of people donating blood and platelets. With so many people relying on life-saving transfusions it would be amazing to see people signing up to give blood. Please go to the website NHS Blood. It searches for centres near you and you can register and book to save someone’s life.
• Speaking with Blood Cancer UK this week, they have highlighted how beneficial people leaving donations to the charity in their wills has been. There is so much value to Gifts in Wills, as around a third of Blood Cancer UK research is funded this way. People don’t always talk about the importance of having a will. I guess the topic is a bit depressing, but how amazing to leave such a positive gift behind. There is more information on the Blood Cancer UK website.
• If you shop through Amazon.smile.co.uk you can select a charity to donate to every time you shop with Amazon. There are little ways every day you can make a positive difference.

To everyone fighting cancer within our community, I am sending so much love and strength. You are not alone. My inbox is always open. Keep the faith.