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Accommodation project takes step forward to support people with blood cancer

Accommodation project takes step forward to support people with blood cancer

Illustration of proposed Murdoch Health & Knowledge Precinct
Illustration of proposed Murdoch Health & Knowledge Precinct

It’s a promising time for Western Australians living with blood cancer.

The Leukaemia Foundation team is working closely with developers Fini Group to support the outcomes of the Murdoch Health & Knowledge Precinct in Perth, Western Australia.

Aiming to bring this revolutionary share-building space to life, the project will centralise the treatment experience and relocation options for people with blood cancer.

The precinct will include short-stay accommodation, residential apartments, aged care services and allied health services (and much more!), positioned between two major hospitals.

It will also be the home to charities and not-for-profits, driving opportunities for collaborative and innovative services for the wider community.

You’re Caring for Carers

You’re Caring for Carers

Being a carer for a loved one who has a blood cancer can be rewarding, stressful, overwhelming and isolating.

Two hands holding a small red heart ornament

Across Australia, more than two million people regularly care for a spouse, partner, brother, sister, parent, friend or child. Their care and support vary, from a couple of hours a day or week, to around the clock.

With the help of our kind supporters, the Leukaemia Foundation has developed an e-learning course, Caring for the Carer to meet the needs of those in this important role. Blood Cancer Support Coordinators have designed and this program especially for carers of people living with a blood cancer.

Not only will completing this online course help carers to recognise and support their emotional and practical needs, it also provides access to all the services, support and guidance that is available to them.

You can explore our Caring for the Carer course here.

World CML Day Webinar

World CML Day Webinar

Every year on 22 September the blood cancer community unites to recognise people living with chronic myeloid leukaemia (CML) and raise awareness, celebrate breakthroughs in treatment and acknowledge what still needs to be done.

We’re proud to bring you a free, live webinar featuring CML expert Tim Hughes.

Speaker

Professor Tim Hughes – Haematologist, Blood Cancer Taskforce Member, International CML expert.

Topics:

  • CML overview
  • Blood Cancer Taskforce
  • Current CML treatment
  • TKI treatment
  • ICMLF theme of ‘life without CML’.

There will be opportunities to ask Tim questions in this interactive webinar. Please register to ensure you receive updates and notifications about the event.

Heartfelt thanks to our partners for supporting Blood Cancer Awareness Month’s patient information and education:

AbbVie logo

World Marrow Donor Day Webinar

World CML Day Webinar

Every year on 22 September the blood cancer community unites to recognise people living with chronic myeloid leukaemia (CML) and raise awareness, celebrate breakthroughs in treatment and acknowledge what still needs to be done.

We’re proud to bring you a free, live webinar featuring CML expert Tim Hughes.

Speaker

Professor Tim Hughes – Haematologist, Blood Cancer Taskforce Member, International CML expert.

Topics:

  • CML overview
  • Blood Cancer Taskforce
  • Current CML treatment
  • TKI treatment
  • ICMLF theme of ‘life without CML’.

There will be opportunities to ask Tim questions in this interactive webinar. Please register to ensure you receive updates and notifications about the event.

Heartfelt thanks to our partners for supporting Blood Cancer Awareness Month’s patient information and education:

AbbVie logo

World Lymphoma Awareness Day Webinar

World CML Day Webinar

Every year on 22 September the blood cancer community unites to recognise people living with chronic myeloid leukaemia (CML) and raise awareness, celebrate breakthroughs in treatment and acknowledge what still needs to be done.

We’re proud to bring you a free, live webinar featuring CML expert Tim Hughes.

Speaker

Professor Tim Hughes – Haematologist, Blood Cancer Taskforce Member, International CML expert.

Topics:

  • CML overview
  • Blood Cancer Taskforce
  • Current CML treatment
  • TKI treatment
  • ICMLF theme of ‘life without CML’.

There will be opportunities to ask Tim questions in this interactive webinar. Please register to ensure you receive updates and notifications about the event.

Heartfelt thanks to our partners for supporting Blood Cancer Awareness Month’s patient information and education:

AbbVie logo

Thank you for keeping Gavin’s family close during a bone marrow transplant

Thank you for keeping Gavin’s family close during a bone marrow transplant

Gavin Hill outside in the garden
Gavin Hill, ALL survivor

Gavin thought leukaemia was only a children’s cancer until the day his shock diagnosis completely changed his family forever.  

 In early 2019, Gavin and his wife Jen had just returned to their home in Bundaberg after travelling around Australia.  Their beautiful daughter Dusty has just started school 

Life was good.  

“Work was going well for me, and my partner, Jen finally had the opportunity to go back to Uni,” said Gavin.   

Just like many of us might think, Gavin suspected he was simply working too hard when he became run down and struggled to shake a couple of infections 

Jen encouraged Gavin to go to the GP to get checked out.  

Before he could catch his breath or make plans with the familyGavin was flown straight to Brisbane from his family home in Bundaberg and was diagnosed with acute lymphoblastic leukaemia (ALL). 

Gavin Hill
Gavin during treatment

It didn’t really mean much to me at that stage. I knew next to nothing about it,” admits Gavin.   

This is the moment support like yours comes alive. The moment just after his wife Jen and young daughter Dusty drive hundreds of kilometres to be by Gavin’s side, not knowing how long he’d be there or just where they could stay.  

We connected with the Leukaemia Foundation and were offered a unit at the Patient Accommodation Village and lots of great information.  

“It blew me away what the foundation was providing for the people in our situation every day of the week.”  

After two full cycles of chemotherapy failed, Gavin was lucky to find a suitable bone marrow donor from the Australian Bone Marrow Donor Registry.  

“There was no option B for me – if I didn’t get the transplant, I didn’t have a hope of surviving.”  

Gavin, Jen and Dusty continued to stay at the Leukaemia Foundation Village while he completed the 100-day recovery.  

Gavin and his family recently returned home to Bundaberg and slowly but surely, they’re returning to everyday life.  

You’re there for teenagers with blood cancer through every setback and every victory

You’re there for teenagers with blood cancer through every setback and every victory

Siobhan Hoy and her mum Sally
Siobhan Hoy and her mum Sally

After suffering a devastating relapse last year, Siobhan Hoy knew her Leukaemia Foundation family would be there for her again.

Siobhan was just 14 years old when she was first diagnosed with blood cancer in 2015.

“I was a fit, healthy teenager with a few bad bruises and a couple of bloody noses,” said the now 19-year-old. “A blood test and one phone call later and my life changed completely.”

Siobhan and her family stayed at a Leukaemia Foundation Patient Accommodation Village while she received life-saving treatment.

“My first diagnosis was really hard. I didn’t want to talk to anyone and felt so embarrassed and ashamed of my illness,” remembers Siobhan.

“I wouldn’t leave the room for anything until my mum convinced me one day to go down to see the Leukaemia Foundation support staff in the office.

“I was introduced to Maryanne, a Blood Cancer Support Coordinator you help to fund, and we just clicked straight away.

“There was no shame in what I was telling her. We would talk about all my teenage issues and she would laugh and reassure me through it all.”

When Siobhan relapsed in 2019, she felt assured by her first experience with the Leukaemia Foundation, knowing she would have access to all the supportive care she needed.

“I walked in that first day and said to Maree at the front desk: ‘I’m back, buddy, let’s do this!’,” laughs Siobhan.

“Maree and my mum, Sally, also became really great friends. They would go walking and work out in the gym together.

“That was really important for my mum’s mental health as well because being a carer is not easy.”

Siobhan is grateful to you for the family she built while staying at the village and keeps in regular contact with Maree and Maryanne.

“They see you at your best and worst, experiencing every setback and every victory together.

“I consider them my lifelong friends and actually really miss them now as happy as I am to be getting on with my life.”

Siobhan is now in remission – and we miss her, too!

You helped Jenny navigate her diagnosis

You helped Jenny navigate her diagnosis

Jenny and her son
Jenny with her son, Joshua who flew in from Western Australia to Queensland to be one of her carers.

Because of kind supporters including you, Jenny von Pein connected with the vital information she needed to find her best treatment and take on her blood cancer with confidence. 

Jenny was first diagnosed with a long-developing blood cancer called chronic leukaemia after a routine blood test.

“I got in contact with Sheila, a Leukaemia Foundation Blood Cancer Coordinator,” explains the 57-year-old. “I needed to go where the most valid knowledge was and, if necessary, where the clinical trials were.

“Sheila was excellent at talking me through the terminology, what to expect with the treatment and what it means to have a chronic leukaemia.

Having to travel four hours from her hometown for treatment, Shelia also helped Jenny to access a patient travel subsidy scheme and find accommodation.

“You don’t know what you don’t know. Shelia was just excellent; she was in constant contact with me throughout the whole journey.

“She has been a real leveler, easing my anxiety over the travel to treatment and through chemotherapy.

“We’ve already started to chat about whether I’ll be well enough to go back to work.

“I now know what I’m entitled to.”

Jenny is focusing on her recovery with her medical team monitoring her condition closely with weekly blood tests.

“It’s so important to understand your illness and talk to the Leukaemia Foundation to get direction and assistance on where you’re heading next with your disease,” said Jenny.

Jenny was recently told she is blood cancer-free and is feeling grateful for all the support she received to find the right treatment pathway for her.

You’re putting the human into blood cancer treatment

You’re putting the human into blood cancer treatment

Sherma Beasley
 Your kindness connected Sherma Beasley (pictured) with a lifeline of support

After being diagnosed with an aggressive blood cancer, Sherma Beasley was one of the many Australians left without access to the supportive care they need.   

“I had absolutely no idea what I was in for when I turned up to my first chemotherapy appointment,” said the 57-year-old.    

“I saw a different doctor nearly every time I was there and wasn’t told much about anything.”     

Feeling isolated and unsure, Sherma wasn’t getting the psychosocial, practical, nutritional or financial supportive care she desperately needed – nor did she know how to find it.     

Luckily, it was at that point your kindness reached out to change Sherma’s life forever. With your support Sherma was able to call on one of our Blood Cancer Support Coordinators, Jacqui.  

“Jacqui has been wonderful through all of this,” said Sherma. “She will always have a proper chat, is a great listener and doesn’t treat me like just another person to check off the list.   

“She gave me real encouragement and support, telling me what services I could access to make everything easier.   

“She fixed up my transport to the hospital, provided food vouchers and made sure I was asking my doctors to sort out the side effects of my treatment.”   

When we spoke to her Sherma had successfully completed six cycles of chemotherapy and was awaiting further blood tests.  

COVID-19 delivers difficult times for blood cancer patients – and more challenges lay ahead

COVID-19 delivers difficult times for blood cancer patients – and more challenges lay ahead

Thursday May 28, 2020

The Leukaemia Foundation has more than doubled the support of people living with blood cancer since COVID-19 hit Australian shores and is warning of more difficult times ahead.

Today, on World Blood Cancer Day, the Leukaemia Foundation is concerned Australia is also about to face a spike in diagnosis rates as post COVID-19 after-effects start to appear.

Leukaemia Foundation General Manager – People Living With Blood Cancer Kathryn Huntley said recent reports had shown around half the usual number of Australians had visited the GP or pathology services during the height of the pandemic. Cancer diagnosis rates have also seen a drastic drop[1].

“Sadly, it’s unrealistic to think Australians have stopped getting blood cancer. Blood cancer never stops – not even through a pandemic,” Ms Huntley said.

“We expect there to be a sudden spike in blood cancer cases and all of those Australians will need access to health services and support from organisations like the Leukaemia Foundation.

“Our Blood Cancer Support Coordinators have seen increased demand for supportive care as those Australians already diagnosed with blood cancer continue to ride the roller coaster of COVID-19.

“They are trying to adapt to the changing health service landscape while managing anxiety due to their increased susceptibility to the disease because of compromised immune systems,” she said.

“We are urging Australians not to postpone trips to their GP or specialist and to address any health concerns immediately.”

Ms Huntley said the symptoms of blood cancer could sometimes be subtle or similar to other conditions such as a virus. However, ongoing symptoms like recurrent infections, increased fatigue or bruising or enlarged lymph nodes should be immediately discussed with your GP.

She said early diagnosis could play a key role in surviving blood cancer – particularly more aggressive types.

The Leukaemia Foundation has been adapting its services to support the Australian blood cancer community, utilising telehealth and conducting Patient Support Groups through virtual webinars and chat rooms, all to help patients navigate new pathways through COVID-19 restrictions. It has also been increasing access to information and responding to a huge jump in website traffic.

Ms Huntley said Australians living with a blood cancer could continue relying on the Leukaemia Foundation to guide them from diagnosis through treatment and towards a life of living well with and after cancer.

“We will work hand-in-hand with the Australian blood cancer community to ensure that all Australians who are diagnosed with blood cancer have access to the right information, treatment and supportive care whenever they need it most.”

“Australians who have blood cancer are particularly susceptible to COVID-19. These are still dangerous times for them and we urge Australians to please continue to practice self-distancing and strict hand hygiene and help to protect our most vulnerable. We also encourage all Australians to download the COVID-19 app to continue to help Australia to minimise further spread of the virus.”

Australians who contract COVID-19 while fighting blood cancer are also more likely to die from the pandemic, with recent UK research suggesting patients with blood cancers are at a higher risk of death if they contract the virus (6-11 per cent)[2]. The fatality rate in people living with blood cancer with COVID-19 is also the highest amongst all cancer patients (33 per cent)[3].

There are 110,000 Australians living with blood cancer, and currently, 41 Australians are newly diagnosed every day.  Sadly 20 lives are lost to the disease each day.

The Leukaemia Foundation’s State of the Nation: Blood Cancer in Australia report projects that these numbers will more than double by 2035. Prevalence of blood cancer will sky-rocket to 275,000 and 100 people are to be diagnosed with the disease and over 40 people lose their life to blood cancer every day.[4]

In light of the Blood Cancer in Australia report, Federal Minister for Health, The Hon. Greg Hunt MP, supported the Leukaemia Foundation to establish Australia’s first Blood Cancer Taskforce.

The Taskforce is now working towards delivering Australia’s first National Strategic Action Plan for Blood Cancer which will provide a blueprint to tackle key issues facing people affected by blood cancer, today and into the future. The National Action Plan is due for release later this year.

If you or someone you know is diagnosed with blood cancer and would like support, please contact a Leukaemia Foundation Blood Cancer Support Coordinator on 1800 620 420 or visit www.leukaemia.org.au.

– ENDS –

[1] Recent reports show that in April alone, visits to the GP dropped by 50 per cent https://www1.racgp.org.au/newsgp/clinical/drastic-drops-in-cancer-and-heart-attack-patients  – a statistic that was mirrored by a 50 percent drop in referrals to pathology services at GP and community clinics https://pathologytechnology.org.au/resources/Documents/Position%20Paper%20-%20COVID-19%20Continuity%20of%20care%20April%20%202020.pdfOpen this document with ReadSpeaker docReader
[2] Wenhua Liang,Weijie Guan,Ruchong Chen et al. Cancer patients in SARS-CoV-2 infection: a nationwide analysis in China. The Lancet Oncology Mar 2020 DOI: https://doi.org/10.1016/S1470-2045(20)30096-6
[3] Hui Li, Liang Liu, Dingyu Zhang et al. SARS-CoV-2 and viral sepsis: observations and hypotheses. The Lancet. Published online April 17, 2020 https://doi.org/10.1016/S0140-6736(20)30920-X
[4] http://www.leukaemia.org.au/how-we-can-help/advocacy-and-policy/state-of-the-nation-my-life-counts/state-of-the-nation-download/

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