These are some of the thoughts of women who have attended the support group.
“This group is incredibly important to me.” Natalie
“I think the group works very well the way you and Mary allow us to direct the conversation but you are always there in the background to pose questions where relevant, offer support and information. It is also very important to me to know that I can email or phone you both for support.” Brighid
“There are no answers as to why my life has presented me with such challenges, but I have learnt to seek and appreciate the positives.
I feel we are truly Blessed to have such a special bond and the support for one another in our group” Maria
By BRIGHID MAXWELL
My name is Brighid Maxwell and I am 45 years old. My husband Graham and I live in Toowoomba, Queensland with our two boys, William (13 years) and Jack (8 years).
It was late December 2010. I found what I thought was just a blocked milk duct in my breast. I saw my GP but sat on the referral for a scan she gave me until the boys went back to school.
In February, I went for a mammogram. The scan showed the ‘blocked duct’ was a lump. A biopsy confirmed the lump was malignant. I was 42 and had early breast cancer. I was in shock.
I mentioned to my doctors an ache I had had off and on in my left shoulder blade, a pulled muscle I thought. However, an x-ray showed I had a pathological fracture.
It was a Saturday morning and my surgeon came to my house. He is such a caring man, but even he could not soften the news. He told me I had Stage 4 ‘advanced’ breast cancer – it had spread to my bones. There was no cure. I would always need treatment.
I felt numb. “I just can’t die, I can’t leave Will and Jack,” I kept thinking in disbelief.
Cancer took over my life. I attended a string of appointments and scans. I went in and out of hospitals. There was no time to think. I listened and I did what I was told.
Toowoomba is a beautiful community. I have no family here, but I made close friends through playgroup and preschool. They rallied. Meals were delivered, my boys were picked up from school and friends regularly phoned and visited me.
However, I felt so alone. Cancer put me on the outer. Death was shadowing me. I saw others get on with their lives. I recall having morning tea with friends who were talking about our children just starting prep. I felt like I was physically present but elsewhere, like I didn’t belong anymore, I just felt so different.
I needed to feel empathy with other women in a similar situation to me.
Two months after diagnosis, I was at home alone. Fear overwhelmed me. I couldn’t leave Graham and my beautiful boys. My son William has autism and I kept thinking, “Graham won’t be able to do it on his own! I couldn’t either.”
I phoned the Cancer Council in tears, desperate to speak to someone who understood. I knew of a support group for women with early breast cancer but I didn’t think I’d feel comfortable attending, I represented what these women might become one day and I had no chance of celebrating surviving this illness. I was given the number of a woman who had secondary breast cancer and she referred me to the Advanced Breast Cancer Support Group.
I was so relieved the first time I phoned the Support Group. I felt connected again. I shared my story and heard the stories of other women. I felt joy when one woman said she had been living with secondary breast cancer for over 10 years. I could hope again! I might just get to see Will and Jack grow into men.
The support group is vital to my treatment.
My amazing medical team helps me physically fight cancer.
My Medical Oncologist, Surgeon, Radiation Oncologist, GP and Oncology Nurses have kept my cancer stable. I have had a bilateral mastectomy, radiation, removal of my ovaries and a hysterectomy. I am on a hormone tablet that blocks oestrogen from fuelling my cancer, and each month have bone strengthening treatment and blood tests. I have regular scans too.
The Advanced Breast Cancer Support Group helps me live with cancer.
It gives women the psychosocial support we desperately need. It also takes the pressure off the hospitals. We talk about our incurable illness, treatments and how to manage the side effects. We learn how to hope, how to laugh and how to help our families cope. And we talk about death – a very difficult topic.
Two psychotherapists facilitate the group. Every Tuesday at 1pm, women from all over Queensland phone in. Twice a year we meet in Brisbane with our partners and other support persons to attend workshops with health professionals and for creative expression.
The Support Group gives me the energy to live a full life and to keep the dark thoughts at bay. But they do creep in, especially when waiting for results or when a new ache starts. The group is vital for me to share my fears candidly.
Sadly Brighid died in May 2017.
“I just want to give you both a big bouquet. Our group is functioning beautifully. We are emailing each other regularly and taking great comfort communicating with women who have the same prognosis. And it is due to your organization and will to establish a group of women who can feel so isolated with their disease. It is a great comfort to us all to have each other.” Vicki 6/12
“This Service is unique and the women who have joined the group gain much comfort being able to speak with other women who are following the same path, all with no hope of a cure. The (group) phone call is a highlight of the week and for some, the only thing that keeps us from falling into deep depression. Some women are not in the group for long as the disease overcomes them quicker than others. Some, like me, are lucky to have survived longer but at what cost? Women in my situation live with the constant anxiety of waiting for the next scans that may show that the disease has progressed.
This service in my case has helped my psychological wellbeing and enabled me to cope with my disease.”
Since becoming a member of the Advanced Breast Cancer Support Group, I have found it to be an absolute highlight in my life. The weekly telephone Group meetings have helped me to find a measure of peace with my illness and an acceptance that the end of my life will come all too soon. It has ended the isolation I felt before becoming a member but the camaraderie I have found with these women has been incredibly uplifting, even though on occasion, the purpose of the Group which is to support us through sad events becomes reality.
“In 2011, I was diagnosed with secondary cancer. As I had done in the past I reached out to the organization that had helped me with my first diagnoses only to find that there were no resources available for women with secondary cancers. After a search of 2 years I come across a group called Advanced Breast Cancer Group. The group’s specific role was to provide support to women with secondary cancer throughout Queensland. I met with the group founders and felt real kindred to both the women. I met with the group in the next week and it felt like a home coming. The issues that were discussed were the same issues that I was having and the problems that were discussed were the same problems I was having.”
“As I’ve said often on the phone, I value the unselfish sharing of the women living with secondary cancer. While I am considered “well” at the moment, the feelings shared by the other women at varying points on the continuum of this diseases progress, will add to my fund of resilience for the future. I am humbly grateful for the generosity of all the women I’ve connected with in this service.”
“With help from this group, we prefer to see the glass as half full.”
“Knowledge is power & I feel so powerful.”
“Sharing the end stage of other women’s disease has been a privilege. I feel it is part of the journey we all wonder / worry about and seeing other women deal with it gives you the inspiration that when your time comes you will be able to cope too. It also helps with closure in losing someone you have formed a close bond with in a relatively short time. A quote I like is – A Beautiful life has touched us all.”
“For me, the support group has empowered me to be able to “live” with ABC. Rather than just existing on a day to day basis.”
“The bond between the women is as strong as concrete.”
“This group saved my sanity.”
“Being told that one has a disease for which there is no cure, only palliative treatment, is a huge emotional challenge. It has been of great benefit to me to be able to talk about this and related emotions with women who are dealing with the same issues. As loving and caring as our partners, family and friends are it is not possible for them to really understand how it is for us and at times it is frustrating and tiring to be ‘putting on a brave face’ with those around us. With the women in this group, including the therapists, one is able to really be oneself and be truly honest. This is a burden shared and therefore alleviated to a great extent.”