Consumer Engagement Program News

November 2024 – snapshot of consumer involvement

Below are some highlights from members of the Consumer Engagement Program where we hear first-hand what their experience and involvement has meant for them.
 

Kate Gale

Kate was involved in a consumer activity in August 2024 as she joined our Education team online delivery in our webinar series.

‘I was asked to be a guest on a webcast by the Leukaemia Foundation speaking about my experience about going back to work after treatment. I figured if my experience could help somebody else then why not? I was pleasantly surprised to get out of it more than I felt I put in. Hearing others’ points of view and listening to the other special guests was fantastic. I realised I wasn’t alone; the things I was experiencing were normal and I’m not the odd one out. There is a big community out there and we can all lean on one another. I wouldn’t hesitate in taking part again!’

Mitchell Tisdell

Mitchell was able to film himself in a fun way sharing his passion for his below Sydney Swans and whilst identifying as someone living with blood cancer and teaming up with our Social Media team in doing so.

‘I am a big Sydney Swans fan, ironically, they are nicknamed “the bloods”! As part of this I made a short video for the LF social media answering some questions about being diagnosed and treated for AML and my life after treatment. I found the whole process therapeutic. It forced me to think about and talk about some things that I hadn’t acknowledged for a while. It was extremely well received by my friends and family with lots of them sharing the posts. The whole process was easy, the hardest part was me not fumbling my words, I would be the world’s worst actor. Hopefully by sharing my story it will help to create awareness of what people with blood cancer endure and generate some support for the LF to continue their vital work. I have put my hand up for a number of CE activities now and I would encourage everyone who can to also get involved!’

Nicole Blanch

Nicole was involved in a consumer activity in October 2024 as she joined our Education team online delivery in our webinar series.

‘In October I participated in the “Psychological Effects” webinar which allowed me to share my story about the psychological impact I’ve experienced since being diagnosed with myeloma. Mental health remains a difficult and sensitive topic due to its invisible nature. This webinar provided a unique and important opportunity to openly talk about issues I hadn’t even discussed with friends, let alone publicly. I described some of my fears associated with cancer, how they live in my head each day. Although I looked the same on the outside, my relationships and priorities significantly changed. I hope my story highlighted the considerable effect that cancer has on mental health and helped those watching feel a little less alone in their thoughts.’

Kerry Boyenga

Kerry engaged in a Video Shoot in recent months which allowed her to share her story, and which ultimately ended up being shared in our ‘Fair Go’ awareness campaign.

‘The interview and photo shoot took most of the day but there were some lovely photos and recordings of myself, our family dog ‘mudj’ and the beautiful Moruya River by the end of the day. I didn’t realise how exhausted and mentally and emotionally drained I would be afterwards. It was like reliving the whole thing all over again but I’m very glad I did the interview.

One very important message I was trying to get across was that I felt there was a delay with my diagnosis. I felt that I had had my Lymphoma for at least six months before diagnosis which was picked up eventually by another GP rather than my regular GP. By the time I was diagnosed I was at Stage 2.’

July 2024 – snapshot of consumer involvement

Below are some highlights from members of the Consumer Engagement Program where we hear first-hand what their experience and involvement has meant for them.
 

Belinda

Belinda was involved in a consumer activity in May 2024 as she spoke in front of a room full of supporters to our cause, organised by our Member Branch in Warwick, QLD.

‘In May 2024 I was invited to speak at the Lavender Morning Tea run by the Warwick branch of the Leukaemia Foundation. It was a very special event, and I was treated like a VIP. I spoke of my experience with my husband through 11 years of a blood cancer before he died in 2021. I was able to share how much we both valued the LF’s support through those years and what that meant to us and our extended family. LF helped us both financially, with housing close to the hospital when we needed it as well as funding research for most of the treatments my husband had in those 11 years.

I have supplied a photo of John-Michael and I on our wedding day in 2008, a mere 12 months before he was diagnosed.’

Wayne Douglas

Wayne joined the Consumer Engagement Group last year and was more than happy to team up with our Business Partnerships Team, which has forged a new partnership with Norstar Steel Recyclers. Wayne shared his patient journey with our new partner, and they have embedded his story into their website so as to highlight the impact of Leukaemia Foundation.

‘Earlier this year I was re-connected with the Leukaemia Foundation and Norstar to correspond my journey with myeloma. I have been fortunate to have received wonderful support and encouragement from the Leukaemia Foundation. Hopefully my story inspires and encourages support for the Leukaemia Foundation, to find a cure for all blood cancers.’

Jenny Nixon

Jenny responded to a call-out for someone to speak at our internal organisation-wide meeting to launch our Online Support Service (OSS). It was themed around ‘cancer-related fatigue’ and she shared her story and how fatigue impacts her life.

‘I was still suffering from cancer- related fatigue after my first transplant in 2018, due to myelodysplasia, when I was diagnosed with acute myeloid leukaemia in 2022. After transplant number two my fatigue became worse. When the Leukaemia Foundation approached me to speak about cancer- related fatigue versus “normal” fatigue at an online meeting, I didn’t hesitate. It’s something we need to educate family, friends and the public about as it’s rarely understood.’

Eve Cossette

Eve had a recent engagement helping to facilitate our webinar delivery.

‘Last May, I participated in the Grief and Loss Webinar which allowed me to talk about my experience as a young adult diagnosed with cancer. As my first time speaking about my story publicly, I was able to mention how grief and loss have impacted different aspects of my journey. Grief and loss appear in so many ways for people living with cancer, and it is important to make light of it.’