Leukaemia: Facing the challenges and fighting back | Leukaemia Foundation

Leukaemia: Facing the challenges and fighting back

Blood Cancer Awareness Month hub

Jane has felt the impact of a blood cancer called leukaemia. The following are all Jane’s words, shared with the Leukaemia Foundation to help raise awareness of blood cancer during September’s Blood Cancer Awareness Month 2019. You can share your story, too, by clicking here.

One minute you are a normal young family. Trying to find a good work life balance and fit everything into a busy week.

You don’t have time to slow down and watch the sunset and forget the sunrise. If you can sneak those extra minutes sleeping you do. You wish away the working week, looking forward to the weekend, which always passes in a blink of an eye.

And then the phone rings. Without hesitation your loved one is given the diagnosis leukaemia. No holding back. Go straight to hospital, there is no $200 for passing go. And in that minute, that moment, life stands still.

You are no longer a normal family charging through life. You have joined an exclusive club that no one wants to be in. A club where everyone’s world is spinning widely out of control. Where grown men cry, and family sit by hospital beds and wait. A blood cancer diagnosis brings so much waiting.

Hair loss after chemo

You quickly become an expert on all medical terms. Induction. Consolidation. Transplant. You know where the ‘shh’ button is on the IV pole. The beeping as a transfusion is finished is annoying. The beep of the flush four minutes later can send even the most calm person over the edge.

You anxiously wait for the patient’s hair to fall out. Isn’t this what leukaemia is about? A shiny bald head and chemo. Truth is, the bald head comes and goes without even a blink of an eye. It is something small, and in this club, you no longer sweat the small stuff.

You finally notice the sunset. You see it every evening through a space between the high rises of the city. You no longer appreciate the beauty. It symbolises the outside world. The world where you used to belong and hope to one day go back to. A world where you can make plans for dinner, catch up with friends or even book a holiday.

Everything stops with a blood cancer diagnosis. Your plans are made minutes ahead, at best an hour.

Sharing experiences

The sunrise you see always brings equal parts relief and exhaustion. If you see the sun rise, you have probably been up all night worrying, or not even left the hospital. Things are probably not going well. It’s also a relief, that you have beaten another day, the sun will continue to rise no matter what the outcome.

A MET [Medical Emergency Team] call for the ward rings out. The nurses and doctors are walking faster than their normal fast walk, grabbing the emergency trolley on the way. You look away and close the door. The fear for the family is gut wrenching, you’ve been there and all you can do is cross your fingers and hope you see them still on the ward later.

Whilst you are waiting to beat this blood cancer you meet other people from the club. You chat about your experiences, talk about what day you are up to. But you stay at arms length. It’s fine when everything is going well, for both of you. Its comforting when it’s not, for both of you. It’s a huge level of unfair when it’s not for one of you, and that is you.

Going home after treatment

Finally, your days are up. Many months have passed and the year is almost over. You are all scarred and scared to death. You have experienced things no one should ever have to. You have faced the challenges and fought back cycle after cycle. You leave the hospital with your loved one and their brand new immune system and your fingers firmly crossed.

You go home to recover physically, mentally, emotionally and financially. Your kids, who have spent all year in a permanent state of anxiousness keep asking when is it time to go back to hospital. You say with a smile never, it’s all over, while pushing the thoughts of a relapse back. You want to be one of the lucky ones.

You know it will never be over. It is five long years of appointments before you will hear the word cure. There will always be doubt. Always.

Posted on September 9th, 2019

Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.

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