When I was first diagnosed with early breast cancer, the services were great – parking vouchers, money towards a wig and my electricity bill, and a breast care nurse to help me navigate cancer. But when I was diagnosed with metastatic breast cancer at 48, my world fell apart. The support just wasn’t there. There was no contact with a breast care nurse to be my source of information as I was processing this diagnosis and its implications. It was a confusing and scary time. I saw the palliative care team, which was really confronting.
It made me think, ‘Am I dying?’ – I didn’t realise that palliative care can actually be helpful at all stages of metastatic breast cancer. Financially, the support is just not there, even though my needs are greater. There’s no money to cover parking costs and time off work, even though I have to go to the hospital every three weeks. I had chemo and lost my hair for the second time, but there was no money for a wig this time. My oncologist looks after me, but otherwise, I feel on my own.
I found dragon boating, which is fabulous for exercise and support from other women, and I heard about a service through the hospital in Brisbane, where someone interviews you and captures memories for your children. These are great things, but I had to be proactive and find them myself, at a time when I was feeling so vulnerable, and learning to live with an awful diagnosis. Women with metastatic breast cancer desperately need extra support. I would love to have a breast care nurse to help me through, but it hasn’t happened