Life with Leukaemia: 'With a transplant potentially on the horizon and the consultant’s words ringing in our ears, we decided to get away for the week to be among trees and nature'
A Bishop's Stortford family's story of navigating the emotional, physical and financial challenges of living with blood cancer, by Amy Gannon
Cancer has been in the press a lot lately. With cancer care in the NHS still suffering from the Covid pandemic causing disruption to health services, the ‘cancer backlog’ is still very much a concern.
Now, more than ever, it is so important to promote cancer awareness and encourage people to get help and go to their GP if they feel something is not right.
Headlines have been full of Deborah James – known online as ‘BowelBabe’ – being made a dame for her tireless efforts to promote awareness of cancer. Whilst receiving end-of-life care for her terminal bowel cancer she has raised over £6 million for cancer research. She is truly an inspiration. Her sheer lust for life and desire to continue living is just so pure and inspiring.
My fiancé Joel’s blood cancer diagnosis has changed the whole way we view the world. This year showed me life is not just something you wake up to, it is not just a given.
Life is something you have to fight for, and if you’re not fighting for it, if you’re just inhaling and exhaling and walking through this world without a worry, then you truly have everything.
After a tough appointment with Joel’s consultant, who told us that for a cure Joel would most likely need a bone marrow transplant, we had a big think about the way we wanted to spend ‘now’.
The consultant said: "You need to start living for now, not in fear of the battle that is to come."
Those words stayed with me as we walked down the corridors of Addenbrooke's Hospital in Cambridge to the car. Those corridors hold so many memories. The words said and treatments given in the rooms off those corridors hold so much power over people’s lives, emotions and existence.
Our appointment really highlighted to me the importance of bone marrow and stem cell donors. With only 30% of patients able to find a compatible donor within their family, it is so important to have people of all ages and races signed up to the donor register.
DKMS is a charity dedicated to fighting blood cancer and blood disorders, giving people a second chance at life through its donor database.
To register to donate stem cells, it couldn’t be easier: go to the DKMS website and register online. You’ll be sent a swab kit. Simply swab your cheeks and return to DKMS. Once your swab has been analysed you will be added to the register and available to save the life of someone anywhere in the globe!
With a transplant potentially on the horizon and the consultant’s words ringing in our ears, we decided to get away for the week. We headed to Center Parcs to be among the trees and nature. We turned off our phones and focused on us.
Watching Joel walk alongside other people, he looks a picture of health. He blends into the flow of the crowd. Nothing notable that screams ‘I have cancer’. Sometimes, for a moment, I forget that he has cancer all together.
While the majority of the country has ditched masks and returned mainly to normal, we still have to be very careful. We lateral flow test regularly, avoid crowded places and still wear masks. We have to trust in people making the right decisions; immuno-compromised people were somewhat neglected when the Government stopped compulsory isolating and access to free tests.
The reassurance and protection that frequent testing and isolating if Covid positive offered society’s medically vulnerable have vanished, and trying to socialise in safe ways has become even more challenging.
This last fortnight has taught us to stop just existing and actually start living life with Joel’s leukaemia.
To anyone battling this cruel illness, you are more than your cancer. Cancer is part of your life but it doesn’t define you.
Living alongside cancer is tough, but that doesn’t mean it has to be all your life is about. You can still be yourself – let your old self shine through the illness.
Sure, life has to change in certain ways; benefit versus risk has to be weighed up a lot. There are many challenges and it’s not easy, but I promise you can still find ways to be happy.
You can strive to not just simply exist but to actually live with cancer.
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