“Having the same GP throughout the journey is important. My GP was able to support me as a mother…establish an avenue for communication with your health care providers. It might just be that you need to ask, ‘This is happening, is that normal?”
Marilyn is Brydie’s mother. She is a nurse and talks below about the experience of supporting Brydie through a diagnosis of, and treatment for, borderline ovarian cancer.
What were the main challenges for you?
Processing the information and making decisions
The challenges have been in processing the information – what does it mean? Is it life threatening? Are we doing the right thing? Have we chosen the right doctors? Are we supporting her to make the right decisions around treatment? Do we do the Zolodex? What are the long term effects? And having to help her manage her feelings and anxieties. Managing our family’s reaction to it. And the whole fertility thing. Should we be looking at harvesting eggs? These are all the things that go through your mind.
People not believing that Brydie had cancer
I think some people thought, ‘Oh don’t be ridiculous, you can’t possibly have that diagnosis, you’re only young. You’re probably making it all up’. It is shocking. People still don’t believe that young people get cancer. It’s hard to get support from people you think you’re lying about your cancer
What worked best for you?
Getting credible information
Like most people, initially I sat and Googled. The information (about ovarian cancer online) is just so mixed – you’ve got one website telling you something horrible, and another telling you something not so horrible. Different countries have different ways of approaching treatment, so it was a bit tricky.
I started to filter out and look for more credible information in medical journals. I also tried the Australian-based websites. Ovarian Cancer Australia’s Resilience kit lists some websites. I looked for things that were backed up by Ovarian Cancer Australia or ovarian cancer research. Initially I was looking at everything and anything – but then I tried to be a bit more rational, and I mainly looked for patient information that was more readable.
Supporting my daughter through this
Brydie had never had a gynaecological examination, let alone an internal pelvic scan – which she was now having to have frequently. Trying to maintain her privacy, and supporting. It was like, ‘Well do you want me to come in and hold your hand’, versus, ‘Do you really want me sitting there while you have an internal examination?’ It’s a fine line between the innate desire to support your daughter while respecting her right to privacy. We have perhaps had conversations that most mothers and daughters will not have thought they would have unless they were in a similar situation.
Caring for myself
I’m generally a person who copes well, but people don’t understand that this is an out of the box situation. So if I’m not coping, then allow me to not cope for a bit. Comments were made like, ‘Thank god it was your daughter that was diagnosed, because the rest of us wouldn’t cope with that’. And you’re thinking, ‘Really?’ They’re well-meaning comments, but I don’t think anyone should be diagnosed.
I was able to access some counselling through my employer’s assistance program. I took myself off for some sessions. It was about me at that point and how I was managing the situation. I also used a bit of journaling, to get things out of my head, and that helped me to get a bit of clarity and helped me to form what questions I felt were unanswered.
While I say that I’m a really strong person, I realised that this was an exceptional situation and that I needed to take some time out for me so that I could then be available for my daughter.