Cancer and mental health on RUOK? Day

The Australian Institute of Health Welfare (2021) indicated 1 in 5 Australians (5 million) will suffer mental health conditions, however, a staggering 54% of these people do not access treatment.

An estimated 163,000 people are projected to be diagnosed with cancer in 2022,  and the impact of cancer on mental health is often overlooked.

40% of cancer patients experience clinically significant mental health issues, including depression and anxiety, making the need for care evident. (Cancer Council Victoria)

If you are living with cancer and need support, there are a number of reputable organisations equipped to help.

You never walk this road alone.
Cancer Council 13 11 20
Lifeline 131114
Beyond Blue 1300 22 4636
Canteen Connect online service – https://canteenconnect.org/

Those living with sarcoma nationally have access to clinically supervised free of charge support services through the Fergus McCulla Psychological Support Programme.

Call Keith Cox or Tania Rice-Brading  02 93575378 or go to the link in our bio to arrange a consultation.

Finally when you ask anyone the question RUOK? It’s important to really listen to the answer, encourage relevant action and check in regularly with that person to see how they’re doing.

A very sad goodbye to a special young man

Vale Jarrod Anderson

19th August 1995 – 5 September 2022

Jarrod was your typical 26 year old living each day to the full .

Life changed forJarrod in the blink of an eye when he was diagnosed with osteosarcoma 11 short months ago in October of 2021.

The months that followed his diagnosis saw him fight his cancer with every ounce of his strength, with his loving and devoted mum Michelle by his side throughout, together with his siblings Jodie, Stephen and Sarah who provided support to their precious brother.

Two weeks ago Jarrod celebrated his 27th birthday with his remarkable family, and many special memories were made.

Early Monday morning, we were deeply saddened to learn Jarrod’s courageous battle with this cancer had ended surrounded by the love of his family – his one constant throughout.

Jarrod was never left in any doubt as to how much he was, and is, loved.

Tonight we send our heartfelt condolences, our love and strength to Jarrod’s family.

“Photographs are proof that once, even if just for a heartbeat, everything was perfect.”

The Anderson family would like to thank the staff at the Mater Hospital and the Palliative Care Team in Waratah.

A day for our Father’s & significant others

Father’s Day is a day when we turn our thoughts to our dads, and those who fill that role for many.  A day that can bring with it many mixed emotions.

It is also a time we pause to remember those who no longer have their child to walk beside them, and those who no longer have their dad to hold their hand. Each of you holds a special place in our hearts.

We wish each of you love, peace of mind, and a special day, no matter what shape that might take?

A day to reflect upon beautiful memories from the past, and a chance to make many more.

#missingyoucoops
#fathersday2022

When words are not enough to thank you…

When a child/ adolescent receives a cancer diagnosis, their world changes in the blink of an eye.  Often forced to grow up quickly, contemplate their mortality, & endure great emotional angst together with unimaginable pain and suffering.  They watch as their friends continue to live the life they place on hold.

Random acts of kindness make the world go round for young people living with a cancer diagnosis.

We have the greatest privilege of working with the best ambassadors (and human beings) many of which were Coop’s friends.

This week was a truly special one & while these people work quietly behind the scenes, & without fanfare, there comes a time when words need to be found to say thank you.

Yesterday CRBF ambassador & a man with an enormous heart @wippa1 and the  wonderful @camillawithlove together with Camilla’s remarkable team, Alexia and Brooke joined forces to make the day of a little girl, valiantly fighting osteosarcoma for 4 years.  Her challenges & her courage in facing these challenges literally defy words.

Without cameras, media, & with more love than you could ever begin to imagine, a little girl’s dreams came true.

Wippa & Camilla joined forces in 2021 on the celebrity challenge team that raised $183,000 for paediatric sarcoma research at the @childrenscancerinstitute on @celebrityapprentice , through the Wipfli Family Sarcoma Research Fund.

In another part of the world new grandfather and all round good guy @paulroos1 was busy working on making another dream come true for a young @sydneyswans supporter.  Despite his willingness to do what he can for young sarcoma patients, getting the Swannies into the GF may just push the envelope.

Finally the amazing @billysmith___ @art_stanley_ , @thesilverfox68 , Dan & Lisa Miller, @amyparmenterr , Em Rothfield, Yael Bradbury, the team @accorstadium , @allianzstadium & @mcc_members ,  working so hard on very big projects to deliver joy to our beneficiaries over coming weeks.

Weeks like the one past, take a village.  How do we ever thank each of you?

September is Childhood Cancer Awareness Month

Cancer claims the life of three children/adolescents each week in Australia while 66% of survivors suffer severe long term effects.

The Children’s Cancer Institute of Australia reports there are more than 1000 new diagnoses of child and adolescent cancer in Australia each year.  Up to 20% of those children and 10% of the total adolescent numbers  will receive a sarcoma diagnosis.

The AIHW once again predicts in 2022,  bone and soft tissue sarcomas combined will be the leading cause of cancer related death in the 10-24 year age group.

Hope lies in research.  Australia is home to a collective of brilliant scientific minds, who continue to work toward cure.

Funding the work of these remarkable individuals is central to advancing all childhood cancers, and in particular, those like sarcoma, that have not shown the progress other childhood cancers have over past decades.

“The future we want to see is that all children, adolescents and young adults with sarcoma have access to their own novel combination drug therapies – chosen to match individual genetic and drug testing of their tumour tissue.”  Prof Glenn Marshall, Head of Translational Research at Children’s Cancer Institute

It is a matter of when –  not if…

International Dog Day – research for sarcoma

Because it’s International Dog Day, we pay homage to the work our canine friends are doing in the name of research for sarcoma.

This research is taking place worldwide, with special emphasis on WA, where our colleagues @sockittosarcoma are funding innovative research which is another step closer to finding the answers to cure.

Just around the corner is our long awaited range of bandanas for dogs, which will be a fun way of highlighting a very serious topic –  Scarves 4 Sarcoma – Bone & Soft Tissue Cancer.

Over the coming weeks some very well known Australian media identities, sports stars, and musicians to name a few, will lend their celebrity status to this campaign, and team with their dogs, and most importantly, some of those living with sarcoma,  to promote awareness nationally.  Sarcoma awareness is a 365 day a year.

They say never to work with dogs or children… And today we learned why?   Betty, CRBF’s very own bulldog is very comfortable working with patients and families.  Today she frocked up to front our new campaign. The diva emerged and the shoot was all but abandoned until the food came out….

Betty joins @banjo1538 who by the way the complete gentleman.

 

 

Chris’ story of a Desmoid tumour diagnosis

In June of 2020 I noticed a very hard lump in my biceps area. I ignored it as I go to the gym regularly. My best friend Drew is a representative level athlete and knew it was not a sporting injury. He pushed me to call my mum. She made me immediately go to the GP.

The GP was very good and organised an immediate scan and ultrasound for the very next morning. That was a very stressful time for me. I was relieved to find out it was not Osteosarcoma or Fibrosarcoma like they were concerned about. It was put down to a muscle tear. My mother was not convinced and requested an urgent MRI the next day. The result came back as a rare 3 in a million desmoid tumour. It was very confusing. I was told I needed systemic chemotherapy and had to be seen by a Sarcoma Specialist yet it was not normal cancer. Rather a chronic sub form of sarcoma.

The sarcoma surgical team at Chris O’Brien Lifehouse were excellent. They fast tracked everything to be safe and knew not to remove the desmoid as can trigger its return with a vengeance. The necessary surgical biopsy however triggered it. Sometimes desmoids can turn off so a wait and see approach can be useful at times. It was clear mine was growing however and luckily my mother was doing extra MRIs.

Desmoids behave like sarcoma in every way apart from they rarely metastasise. They are locally aggressive and grow like a vine eating everything in their way . As they are aggressive when in the head, neck or intra abdominal areas they can be deadly. They often do not respond to chemotherapy or radiation. Just like other forms of sarcoma.

I did not want to face amputation or a lifetime on and off chemotherapy. Radiation was also being repeatedly suggested despite globally being the last treatment option due to the medium term risks of a deadly radiation induced sarcoma. I was determined to find another way as was my mother, and we were not OK with the suggested further wait and see approach when it was clearly growing.

Luckily we found out about an Israeli trial by Dr Eldad Elkanave via the wonderful support of the DTRF in America, and we switched teams. I felt a sense of relief I cannot adequately describe once I changed. Interventional Radiologist Dr Glen Schlaphoff from Spectrum Imaging/Director of Liverpool Hospital Interventional Radiology and Dr Antoinette Anazodo from Prince of Wales Children’s Hospital changed my life. They gave me hope. They both have the most outstanding patient centred approach alongside incredible medical knowledge and skill-sets in their fields. They backed my wish to have TACE (chemo-embolisation) followed by cryoablation.

I have had five procedures to date. My tumour had grown from 5cm by 2cm by 3cm to 15cm by 9cm by 10cm before treatment started in February 2021 under my new team. Dr Elkanave was involved from Israel which I will not forget. It is now back down to 5cm by 2cm by 2cm. I am the first patient in Australia to do this and first globally to do this first line treatment  for my tumour type. It has allowed me to get on with life in between treatments without the harsh cardiac, fertility, mental health and immune related side effects on systemic chemotherapy.

I would not have completed my HSC or now be at University likely without my parents, Glen and Antoinette’s determination to help change the trajectory of desmoid patient treatment outcomes. Antoniette attended every appointment – even regular check ups with my lovely burns nurse Alison. Their Oncology nurses Fiona and Cathy are the best too. Glen is my hero for the rest of my life!  There may not be a lot of fancy advertising but Prince of Wales Hospital walks the talk when it comes to comprehensive Oncology care for their adolescent patients. Many others with my tumour type are now choosing the TACE and Cryoablation treatment pathway where feasible globally which makes me so happy. I would like to work with stakeholders to see Cryoablation covered by private health funds like it is in the USA and Europe.

Lastly, I know my medical journey is not over. A desmoid tumour diagnosis is a chronic condition. One must have a warrior attitude. The reality is I have many battles ahead to win the war. It is so confronting to sit next to other patients with more deadly forms of sarcoma knowing what that prognosis means. Cooper was the same age as me when diagnosed. His tumour was in the same location.

It is just not OK that Osteosarcoma and Ewing’s Sarcoma have not seen improvements in 40 years. I will help in any way to change this.  Any progress with one form of sarcoma helps another form. For Cooper, for every patient I sit next to on my check up days, for all the rare desmoid patients, and future sarcoma patients I wish for nothing short of a cure ASAP and better support while we achieve that.

I want all patients to have doctors that are patient centred, have sound consultation skills, are determined by nature, and up to date with the latest clinical knowledge. Explaining ALL options available and involving patients in decision making is also key. I want patients who do not have parents who are skilled researchers to have somewhere to turn to in Australia. Be it private or public ALWAYS seek a second or third opinion if concerned and look into trials.

Always remember what extreme talent we have in our Teaching Hospitals! –  Christopher Sabahi 2022

Superheroes don’t always wear a cape

“I believe a real-life superhero is someone who has extraordinary or superhuman abilities or skills. They are people who deserve our gratitude.

During my cancer journey I could name a few, however right at the top of this list is my oncologist Professor Stewart Kellie, the best of the best in my eyes.

After being diagnosed on my 12th birthday with high grade metastatic osteoblastic osteosarcoma, I thank the universe every day for Prof Kellie being assigned to me.

He told me that over the next few months things were going to be tough, I would lose most of the bone in my leg and would have to undergo many rounds of chemotherapy to beat this disease (no different to anyone fighting this hideous disease). But he also promised me that he would always tell me the truth, he would never lie to me no matter how hard his news was. That I had to trust him always and we would get through it all together.

He kept his promise to me, he made me feel so safe and protected and I knew he had my back.

I had a lot of time to think about things while being treated. How dedicated the doctors and nurses were, wondered what their families were like, and how hard Prof Kellie must have worked to become the amazing man he was. I was grateful for him from the beginning.

After many operations and many months of chemotherapy it was also Prof Kellie who delivered the news to me that I was cancer free and I was able to go back home to my hometown, some 300km from the Sydney Children’s Hospital at Westmead.

When Prof broke this news to me, you can imagine the relief for me and those around me. In our last appointment before we left that day Prof said to me “Molly, any more questions before you go?”. I said “Yes Prof I have one. You are one of my real-life superheroes, and I’ve always wondered what superheroes eat. Prof what did you have for dinner last night?”.

We laughed, he answered my question, and I was lucky enough to go home shortly after.

When I relapsed more recently it was again my superhero Prof Kellie that delivered the news after a routine scan. I knew it upset him too, but he again had the ball rolling and I knew I was in the hands of the best.

After my surgery, where they removed the sarcoma nodules from my lung, one of the first people by my bedside on the ward was Prof Kellie.

When I spotted him I burst into tears. Prof said “I’m glad I don’t have this effect on all my patients Molly” before my Mum said “Moll why are you crying, Prof doesn’t make you sad does he?”. I responded with “No he doesn’t. He makes me feel safe and I’m so glad to see him”.

And that why he is my superhero – he is extraordinary, he is so skilful and super, super clever. Regardless of the news he has had to tell me, he has always made me feel safe and he deserves my gratitude.

So, Professor Kellie, this superheroes week for 2022, I hereby rename you – Superhero Professor Stewart Kellie.

You are my real-life superhero and I salute you. Today, always, and forever.” Molly Croft

Meet Lisa Greissl – Founder The Big Hug Box


Lisa Greissl is Founder of Newcastle based “The Big Hug Box”

Lisa’s remarkable body of work came to the attention of all at CRBF in early 2018, after she reached out to us, and a meeting followed during one of the trips she does regularly to Sydney, to deliver the boxes of joy, that have lifted the spirits of all who received them for many years.

We came to know Lisa as a very special young woman, who despite her own experience with cancer, spends every day brightening the lives of those now walking this road behind her.  She is a true force of nature.

After experiencing a her own rare cancer diagnosis in 2015, Lisa advocates for patient wellbeing, health and support and acknowledges the importance of the little acts of kindness that play a significant part in contributing to patient wellbeing which contributed to The Big Hug Box being born.

The Big Hug Box sets out to make the journey of those living with a cancer diagnosis, a little more bearable. Filled with products that are sourced from small business in Newcastle wherever possible, Lisa chooses natural and organic products.  Lisa and her team also encourage random acts of kindness amongst the community by encouraging people to purchase a RHoK Box (Random Hug of Kindness Box) whereby members of the community can by a box that will be delivered and given out randomly to patients at Chris O’Brien Lifehouse, where Lisa was treated.

The team at The Big Hug Box  have raised over $36,000 for cancer research in Australia.

“I am so proud of what The Big Hug Box has achieved and continues to achieve. We have built an incredibly supportive community around us who value the importance of kindness and are aligned with our values and our purpose. Together we will make a positive impact on the lives affected by cancer with a Big Hug and supporting cancer support services and organisations with profits from every sale” Lisa Greissl.Go to https://thebighugbox.com/ to bring joy to the life of someone you know who may be in need of a Big Hug.