THRF’s Under Our Roof project patient story

Under Our Roof will offer purpose-built accommodation to cancer patients and their families who have to travel from regional SA to treatment in Adelaide. The Hospital Research Foundation (THRF) has allocated Dry July funds to this project for the past few years and anticipates the units near The Queen Elizabeth Hospital will open in 2015. Here, Amanda Morris has kindly offered her story to tell how Under Our Roof will make a difference to people like her.

Leaving Her Children to Treat Cancer – Amanda’s Story

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For a mother of two young children living in country South Australia and being treated for stage 2 breast cancer, Amanda Morris believes that The Hospital Research Foundation’s Under Our Roof project would mean the world to people like her.

Diagnosed towards the end of 2014, Amanda, who lives in Kadina with a five-year old and a one-year old, had surgery in February this year and is currently undergoing radiotherapy treatment for her fortunately curable breast cancer.

“You just don’t think it will happen to you and I’m very lucky that I noticed the lump when I did,” she said.

“There were actually two lumps and one was a reasonable size that had tentacles going through the breast and into the lymph nodes. It was quite shocking.

“As soon as they confirmed it was cancer they did tests for two weeks and I was back and forth to Adelaide sometimes nearly three times a week – it was exhausting.”

To Amanda, finding out if her breast cancer was treatable or not was what made all the difference.

“While the diagnosis was a huge shock, all I could think of was that I couldn’t die…I have two kids,” she said.

“Once I had my peace that I was going to live, I just got on with it.”

Amanda had chemotherapy treatment in Adelaide before her surgery and her mum would drive her while her husband would stay at home and look after the kids.

“While the treatment itself was two-three hours, when you include the travel it really is a whole day – we would leave early but arrive home after dark.

“Chemo was awful and I experienced pretty much all of the possible side effects, but fortunately it worked because when they did the surgery the cancer had shrunk so much they couldn’t even find it,” she said.

During all of this, Amanda made sure that her five-year-old son Ethan would cope with the changes she was going through.

“I have a really lovely relationship with Ethan and explained to him that I would lose my hair but we made it light and funny and agreed that he could draw Captain America on my head,” Amanda said.

“We talked about the cancer being the baddies in my body and the treatment I was receiving was the goodies fighting off the baddies.

“When I would leave to Adelaide he would always say ‘Mum, don’t forget to tell the doctor to give the goodies lots of guns, swords, bullets and shields to keep the baddies away.’”

For Amanda, having an Under Our Roof home to stay in during her treatment with her family would change the experience for her completely.

“Being away from my kids is heartbreaking. Thank you to each person who supports Under Our Roof – I can’t wait to see these two homes open up to provide a sanctuary for people like me.”

You can support the vital Under Our Roof project by choosing The Hospital Research Foundation as your Dry July Beneficiary.

https://au.dryjuly.com/our-community/beneficiaries/who-we-help/south-australia/the-hospital-research-foundation/

Chris O’Brien Lifehouse Patient Ambassador: Simone

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Simone Georgiou has kindly stepped forward to support Chris O’Brien Lifehouse as a patient ambassador. Here Simone shares her story:

I was married in November 2013.

Nine months later, I was diagnosed with bowel cancer. Just over a year after walking down the aisle I have become the first patient to have major surgery at Chris O’Brien Lifehouse and the first patient in the new Intensive Care Unit.

Bowel cancer, I have since found, is the second biggest cancer killer in Australia. If you get it early enough, it’s so much more curable. I think back, and if only I’d known the danger and the signs.

In my case, the signs were there. I first noticed warning signals during my honeymoon in Mexico – but they were disguised because I had managed to pick up a bowel parasite that was later treated successfully with antibiotics when we got home.

Then I fell pregnant, and with pregnancy you have even more changes with your bowel. But after I miscarried the problems continued. My GP got me to have a check-up and, even knowing my family history, everyone was saying: ‘Don’t worry, it’ll just be Crohn’s Disease or gastro or ulcers’.

When the diagnosis came, even my specialist was surprised, given my age at 39.

Immediately, my husband and I began a round of IVF, and now have three embryos frozen. We are waiting for the right time to be carried by a surrogate who has selflessly offered. Obviously I now can’t carry a child.  And it was overwhelming to have this offer. It’s just so… so big.

So I am now through the first round of chemotherapy and radiation therapy, and the removal of my entire large bowel and a full hysterectomy to prevent any recurrence of the cancer.

Lying in my bed recuperating from surgery, I’ve had plenty of time to think. I think how, if I hadn’t lost my baby, I would now be dead. Sometimes good things can come from really bad things.

Going through this so young changes your outlook and perspective on life

I often hear people complain about their bad day at work or that they are unable to lose some extra kilos, and it’s sad that they don’t know how lucky they are, they have this amazing thing called ‘health’. I also used to take that for granted, but never again. It’s the little things at the moment that make a big difference.

So I’m looking at what I can do with my life that’s positive and the way my story might help others.

I want to urge younger people to have a check-up if they have a history of cancer in their family.

My grandfather and his siblings died from bowel cancer. My father would have been a carrier of Lynch Syndrome, which predisposes carriers to bowel cancer, but he died of melanoma. I always knew I would get cancer because my family has cancer on both sides, but not so young. I thought I would be older.

I want to do something to support other younger people who get cancer. Under 50, it’s not something you expect. If there’s a way I can make it a little bit easier, to make other people feel they’re not the only one out there, I want to do something, even if it’s just saving one person from this.

Gentle Yoga and Gym programs at the Sydney Survivorship Centre

The Sydney Survivorship Centre is part of Concord Cancer Centre at Concord Hospital. Both the Gentle Yoga and Gym programs have received funding from Dry July.

Gentle Yoga

Thursday morning is the busiest day at the Sydney Survivorship Centre. A cross section of people gathers every week, united in their love of yoga but more, the bond they share as cancer survivors.

Almost no one leaves the same way they came in. Most are chatty and more relaxed than when they arrived. Many in Zhang’s class will attest to how it has helped improve their mood and energy levels and reduced stress and anxiety.

One attendee said ‘having yoga at least once a week provides a break away from our day-to-day activities and rush. It helps with muscle and core strength as well as providing relief and relaxation. I enjoy this class very much’.

Gym

“Until one year ago I’d never set foot inside a gym. It’s now become part of my weekly routine and I miss it if I don’t go. I’ve been motivated to push myself beyond what I thought I was capable of.  I feel so much fitter and healthier.”

                                            – Judith

The gym at the Sydney Survivorship Centre (SSC) is an integral part of the multi-disciplinary service that assists with lifestyle changes including improved exercise, exercise nutrition and behavioural support.

Programs held at the gym include, cancer and exercise research trials, weight management program and the Mesothelioma Exercise Program

Exercise physiologist Jane Turner who has been with the SSC since its inception in 2009, said exercise is a positive and beneficial therapy for people who have experienced cancer. “It is associated with improvements in fitness, strength, and functional ability, improved quality of life, management of cancer related fatigue and other treatment-related side effects, reducing psychological distress-and most importantly forming new support networks and friendships with other exercisers,” she said.

Arts for Health at Calvary Mater Newcastle

Calvary Mater Newcastle’s Mercy Hospice, part of the hospital’s Department of Palliative Care, is a place of care and compassion for patients facing serious illness.

The Fig Tree Program is run in the Hospice and provides an opportunity for palliative care patients to participate in a range of creative activities in a supportive group setting. It has been running for over 18 years and the positive impact it has on both patients and their families and carers, cannot be over stated.

Thanks to recent Dry July funding, the program has been able to enhance its creative offering with the skills and fresh ideas of two Novocastrian artists, Dr Annemarie Murland and Marika Osmotherly, to engage in an ‘Arts for Health’ project.

It has long been recognised that art enriches peoples’ lives in many ways, be it in the form of music, visual arts, or performance. Art in the hospital environment fosters the exploration and expression of thoughts and feelings in relation to a person’s illness.

The artists conduct a session each month facilitating new ideas around the theme, memory and leaving your mark in time and place. The art projects have been designed to allow for personal narratives to capture the essence of the art they are creating.

Additionally, once a month, Annemarie and Marika are artists in residence in the Fig Tree Room. The artists are perfectly situated within the Hospice to interact with families and friends of visiting patients, as well as staff. A place where memories and experiences are willingly shared, the artists’ practice and direction is informed by their environment - a cathartic experience for all involved!

Both Annemarie and Marika are no strangers to arts in the health setting with both artists placing a heavy importance on the need for a felt experience to inform the visual.

“When people engage in creativity there is a shift in the person’s presence and a sense of empowerment is created. It allows a sense of contextualising for the participants which is important in a hospital environment,” says Annemarie.

Jo Davis, an Occupational Therapist at Calvary Mater Newcastle and one of the Program Coordinators, says, “Patients attend the program for a variety of reasons. Some have complex care needs but by maintaining this link to the Hospice it means that these patients can carry on living at home. Others attend to give their carers a couple of hours respite per week, while many come for the social interaction and enjoy taking part in new creative experiences.” Whatever the reasons, there is a common thread, the wish to live an everyday meaningful life despite health circumstances.

“The Fig Tree Program, unlike a hospital clinic, is structured to simply bring together people to enjoy every day social connection and creative activity despite serious illness. The program is very much guided by the needs and interests of those who attend. The great thing about art is its non-confrontational; it is accessible to everyone. I think this is what makes the program work so well,” says Jo.

People from all walks of life have participated. “Every person involved in the project has got something out of it. The beautiful thing about art is that it can constantly surprise – artists, facilitators, friends and families of the participants – it just has that potential,” says Annemarie.

Since the Dry July funded ‘Arts for Health’ project has been running, a number of pieces of art have been created that combine the participants’ individual work to create a visually stunning piece. Individual colourful drawings pieced together to create a patchwork rug effect, plaster casts of participants hands individualised and then created into a hanging art installation of bird like sculptures, portraiture, to name but a few.  

All pieces created both in the Fig Tree Program and by the artists in residence sessions will cumulate in an exhibition later in the year for participants, staff, friends and families to enjoy.

SolarisCare Patient Ambassador: Robina Crook

“Once I started to visit SolarisCare I could not stop. It is a place I could look forward to going to each week. It was an outing each week that gave me such a positive experience. There was no chance of hearing bad news at SolarisCare it was a really important place for respite from any invasive treatments.” 

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Robina Crook was diagnosed with breast cancer at a point in her life when everything seemed to be going well. A successful and talented woman, she faced her diagnosis bravely and appreciated the support offered by SolarisCare. Here’s Robina’s story.

Trying to Keep Things Normal

Life was working out. I was passionate about my job and most importantly, my partner and I had moved in together and were starting to make lots of lovely plans for the future.

I still remember my diagnosis, I was referred to a breast clinic by a doctor but life was hectic and work was busy, a trip to the doctor just seemed more of an inconvenience.  I had these scares before and they had ended up being nothing so all the time remained surprising calm. However this time was different, within days things started to unravel.

I don’t remember telling my partner I was diagnosed with breast cancer, we think we probably nervously laughed about it, and decided just to do all we could to fix it. Telling my family was harder, we had to overcome the vast distance between us and the tough exterior associated with being farmers.

During it all I was still calm. Determined to keep working and have a sense of purpose in my life. As I progressed down this journey, I knew more and became more frightened. Life took on this strange give and take momentum.

Treatment started, it was scary. Surgery followed by the need for chemotherapy, this is when my life really started to change; I was told I could not have children naturally. Tears became the norm.

Surgery, chemotherapy, radiation therapy and a mastectomy were going to give me a chance at life, but it was also taking away our chance of a family and my femininity. Chemotherapy had taken my hair, my chance at continuing my work and it affected my ability to regulate my body temperature.

I fell into a bit of a hole. While I was terrified, I had previously been able to get myself out of bed and go to work but now it seemed like everything was being taken from me.

It is when life seems a bit too hard that magical things can happen. Friends and family helped in any way they could. It was such a comfort to my partner and I to have a constant flow of friends sending us messages, food or sitting with us. To help, I enrolled in a meditation course; I just wanted to find a way to slow down my mind, this was when I was introduced to SolarisCare.

Once I started to visit SolarisCare I could not stop. It is a place I could look forward to going to each week. It was an outing each week that gave me such a positive experience.  There was no chance of hearing bad news at SolarisCare it was a really important place for respite from any invasive treatments.

When diagnosed and going through treatment, it can be difficult to see family, friends and colleagues. Often, unintentionally they would say something to make me cry. Interaction with people became an emotional minefield. At SolarisCare, each appointment is one hour of rest and relaxation with no chance of emotional confusion.

I decided that I needed to give myself a chance to recover in the best possible way. Recovery for me included stilling my mind, massage and reflexology was an important part of that. Each week I managed to get myself off the couch to go see the positive and happy team at SolarisCare. Over the last year, the volunteers at SolarisCare have gotten to know me well and I really look forward to seeing them each week.

The volunteers would tell me how they managed to recover a passion for life after their experience with cancer. One wonderful volunteer at SolarisCare brought in her needle-work she had created during her treatment. It was beautiful and inspired me to be creative. I decided to enter into a costume competition. This was a wonderful way of focusing on something other than me. I named my costume “Alarum (Latin: wings)” it represented a colourful and beautiful metamorphoses rather than the one I felt I was going through.

Now, my partner and I are beginning to explore our options for a family. I never thought I would be in this situation and it seems very surreal. For us family is about a group of people that love and care for each other, it can come in many different forms. We don’t know where this will lead us.

But what we do know, together we will make the most of it, whatever comes our way.

The SolarisCare experience is such that it has motivated me to willingly volunteer to support the Foundation to raise the much needed funds for this incredible free support service to continue. 

I am proud to be a 2015 SolarisCare Dry July ambassador and encourage the community to sign up or donate.

SolarisCare Patient Ambassador: Deb Walker

“I can thank my cancer for lots of things and contrary to mainstream belief, most of them are positive.”

Deb Walker, a former patient at SolarisCare’s Cancer Support Centre in Albany, has kindly stepped forward as an ambassador for Dry July. Here’s Deb’s story.

Christmas Eve 2013, I was diagnosed with stage 1: grade 3 breast cancer.  

I was now a member of the “C Team” and you wouldn’t have a clue what that means except losing your hair! Confusion reigned supreme.

I prepared to surround myself with professionals who would guide me through the cancer maze.

Frustrated and angry, I realised I had a voice and I can use it to nurture myself, so I asked questions and demanded that this busy Cancer Industry listened to me.

It was about this time on my journey I sought help for my mental, emotional and spiritual state of mind.  Something I find mainstream medicine knows nothing about, they have to remain analytical.

SolarisCare Great Southern at the Albany Campus was my haven, within the walls of traditional medicine I found I could make appointments for free massages, reflexology, reiki or just sit and have a chat and a cuppa. I regained some faith that modern medicine was accepting the importance of healing the whole body not just the affected site.

After six rounds of Chemo I travelled to Perth for six weeks of radiation treatment and had to re-start sourcing my support team however, I knew to go straight to the SolarisCare Sir Charles Gairdner Hospital. Again I had found the haven that is a privilege to those in “C Team”.

I sought free counselling, offered by SolarisCare, because I needed help relating to others after my life and changed so much.  After the “seriousness” of the last 8 months I needed to relearn and accept how this was going to affect my life from this point forward. Through SolarisCare I was able to empower myself.

I will forever be grateful to the SolarisCare Foundation for giving me these precious, priceless spaces and moments of healing.

This is why I did not hesitate to support Dry July because it raises funds to support for ALL cancer patients and their families.