Specialised care for our youngest patients | Chris O'Brien Lifehouse
 In Fundraising, Inspiring Stories, Lifehouse News, Patient Stories

Sarcoma is a rare and devastating cancer that primarily affects adolescents and young adults. Little is known about the cause of sarcoma, why it develops in young people, and why it often returns after treatment and is harder to eradicate.

Chris O’Brien Lifehouse is the main referral centre in New South Wales for bone and soft tissue sarcomas.  With the help of our donors, we have been progressively establishing positions, resources and services that will enable us to take meaningful strides towards better prognoses for sarcoma patients.

Clinical Nurse Specialist

Thanks to the incredible support of our donors, we have established a new position at Chris O’Brien Lifehouse to support the unique needs of this group of patients. Katie Thomson is our first Sarcoma Clinical Nurse Specialist (CNS). A CNS is a highly skilled and specially trained advanced practice nurse with extensive experience and knowledge in a specific area of care.

Katie is the main point of contact for a sarcoma patient throughout the treatment journey. She provides specialised and compassionate care for the whole family.

Having a CNS available to young patients with sarcoma is a vital part of the Chris O’Brien Lifehouse Sarcoma Centre. Katie says, “I’m the link between the patient, the doctor and all the other services available to them. I attend clinics with the doctors and am available for all my patients at any time. I make sure they are linked to all the services they need, especially in the case of younger patients who are at university or have just started jobs.”

“When I first meet patients, I get to know them and their background. I do an initial assessment and identify what their needs are. There are usually siblings involved as well, and parents and partners, and they all need some level of support. I’m here for all their questions about the cancer or treatments. It’s often most difficult for the parents. I find young patients so resilient and strong, and they have a lot of hope. It’s always important that they have hope.”

“I think this experience makes them question everything in life, and what was important to them before their diagnosis is not generally important to them afterwards. You watch them grow up very quickly. Something that threatens your life is always going to have an impact on the way you view the world. A lot of these patients just want to travel and see the world, whereas before that wouldn’t have really been that important to them. Having cancer gives them a new outlook on life.”

“My favourite part of this job is working with these young people. They can confide in me and I love having conversations with them and just listening to them.”

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Living through sarcoma

Celeste is an ex-Olympic swimmer and an exercise physiology and psychology student. She was diagnosed with Ewing’s sarcoma in 2017 when she was 22, just a few months after she and her husband George were married. Cancer threw an unimaginable challenge in her path, and she faced it with the grace that epitomises this special group of patients: strong, brave and resolute in the face of incredible adversity, and also determined to live life with cancer in the best way they can.

Celeste is grateful for the support she received at Chris O’Brien Lifehouse,“The support was crucial to my journey, particularly being able to talk to a psychologist. I understood that cancer was going to mess me around physically, but I had full confidence in my ability to deal with that. What completely blindsided me was the emotional and mental impact. This isn’t often talked about. I had never had to deal with depression and anxiety before, I didn’t know how to overcome the stress.”

“I’ve had thoughts about dying and wondered if I’ll get through it. But my husband and I try not to think too far ahead. It’s not helpful in this situation.”

“After my first few rounds of chemo, I recognised how my body was feeling, what I was good with and the things I needed help with. Focusing on these helped me move forward.”

Celeste took full advantage of the range of services on offer at Chris O’Brien Lifehouse. She says that having access to the nurses in Day Therapy and the Sarcoma Nurse Specialist was hugely positive, “they always made me feel happy and important.”

“I joined in the art therapy activities and enjoyed the choir. I had weekly reflexology session and the exercise physiologist Michael Marthick gave me programs of exercise to do at home. The social worker helped us with vouchers for food, groceries and travel. There is a whole team of people who introduce themselves at the beginning and are with you the whole way through. They recognised my age and understood my experiences. I felt so supported.”

“I hate to think of where I would be without all that help. It’s hard to put into words. All I can say is thank you.”

Celeste has finished her treatment and is excited to finish her studies and pursue her passion for helping others by speaking about her experience.

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