Blood cancer doesn’t stop: Shelley’s story
For Shelley, life facing COVID-19 is in some ways “business as usual”, but in other ways, means changing the way she and her family go about their daily life.
At one hundred and ten days post stem cell transplant, Shelley is navigating a ‘new normal’ type of life as she adjusts to living back in the Bridgestone Australia Leukaemia Foundation Village in Adelaide with her husband and carer, Jason. Her two children, Jett and Jayda-Star, have been mainly living back in the Riverland over 250km away, under the care of Shelley’s sister.
We caught up with Shelley to learn more about how she is feeling.
We have been down here in Adelaide for nine and half months now, so a lot longer than we originally thought.
When I found out I had leukaemia, it just completely flipped our world. I was asked by my local GP in Loxton to go to the Royal Adelaide Hospital for further tests. When the registrar came to see me, he told us it was leukaemia and that I wouldn’t be going anywhere for a month. We were in complete shock.
Dealing with anxiety
I’m at 110 days post-transplant and I’m still immunosuppressed. I’ve also found out that my cytomegalovirus (CMV) has returned. This is a common infection after a stem cell transplant presenting like a mild flu, but can be serious for someone with no immune system.
COVID-19 coming along has been intense. It brings up all my anxiety and nervousness. I’m in the four percent of vulnerable people because I’m immunosuppressed and have no vaccinations. Adding coronavirus on top of this makes me even more susceptible. This is what I’ve explained to family and friends, so they can be understanding.
Finding a trusted source of COVID-19 information
I’m making sure I get information from a reputable source, as there is that much information going around. Speak to your doctor if needs be. I look at the Leukaemia Foundation website to find my information and updates, rather than watching TV and reading newspapers, because I think the Leukaemia Foundation is a trusted source. I just thought, go to someone who you can trust, who knows what they are talking about.
Changing the way appointments are done
My doctor’s appointments have become phone consults. I do know some people who have been having nurses come out to them to prevent them from having to go anywhere.
I’ve found a quiet medical centre to have my bloods taken. I sit in the car and they call me when they are ready. But it’s still nerve-wracking putting yourself out there to a place of possible exposure.
I guess for us (people with blood cancer), we are used to being in self-isolation. This is what we do, this is how we live. Everything they are trying to educate the public about is everything I have been doing for the last nine and half months. Washing hands, masking up, reducing who I see, not seeing people who are unwell.
So it’s business as usual for us. Just do the right thing so we can get through this.
A pause on integrating back
A few months ago, I was getting really down. I felt like I was by myself and the world was revolving around me with everyone getting on with their lives. Meanwhile, my world had stopped.
After the stem cell transplant, I was recovering and starting to do little things. I’d started to go to the supermarket with Jason for a little shop, because for me, that was special! It was normal and I felt like I was integrating back into life. And then COVID-19 has come along and there goes my integrating. I feel like suddenly, I’ve gone back to being by myself, with the world revolving around me.
Slowing down and finding calm
In a way however, it’s nice too. I’m using time to reconnect with family and friends over facetime as the world slows down.
I’m writing in my gratitude journal, because finding a few things that you are grateful for every day can really change your mindset. I’ve also got my vision journal, where I’m putting together all my plans for my garden at home.
If I’m having a bad day, I use meditation. Or I watch a good comedy, something light and carefree!
A village of support
Staying at the Bridgestone Australia Leukaemia Foundation Village during this time has been amazing. We feel so safe and secure here. It’s a real community and from my experience here, it’s just full of love and kindness. The positivity, considering everything that is going on, is great. We need somewhere safe and calm to heal.
How to show support for Australians with blood cancer during COVID-19
I know that everyone is dealing with it in their own way and for some, humour is the best medicine. But just please be mindful of who you are sending funny COVID-19 memes and jokes to, because for some of us, it’s not a joke.
For some of us, we’re trying to avoid the constant talk of coronavirus. Talk to us about life…there are other things we can talk about.
And do the right thing. Wash your hands, cough into your elbow, stay home, self-isolate.
Doing things like that is how you can support us.
We’re vulnerable right now, both in body and in mind, so please take that into account.
And check in, have a chat, but let’s not focus on the negatives all the time.
Share your story of living with blood cancer in the COVID-19 crisis.
Tell us how the outbreak has impacted your every-day life and how the Australian community can best support you through this uncertain time.
Also share your message of support for other blood cancer families and advice for keeping safe during the outbreak.
We may then share your story with our blood cancer community.
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