"Stage four breast cancer patient"

Was referred to SCGH for a trial. Explained in my first appointment that I have a lot of medical trauma from previous Stage 1 treatment including when I had a clot and was dismissed and told it was a bruise (at another centre).

Started the trial testing and communication about the testing appointments was poor. I was appreciative of the opportunity but it is difficult to be flexible when I have a 4 year old in kindergarten and a 9 year old to take care of, and it was school holidays so they were home every day and I wanted to make sure they had enjoyable holidays. I found myself constantly having to follow up to find out times of appointments and dates. The team were kind but I get the impression they were over worked because I was not getting enough notice and information to be able to provide care for my children. One test was an eye test and I asked several times if I would be able to drive after it. I finally called Lions and it turns out I was not. The trial team kindly reshuffled the test and removed this aspect from it but if I hadn't have checked I would have driven myself to this test and had no way to get home pick up my kids or take care of them and our only family car would have been stuck at Lions!

Finally I was meant to have a doctor appointment on the day of my child's birthday, I really wanted to know the time of this appointment so that I could organise an enjoyable activity for my child. I called twice and this was how I found out I am not eligible for the trial or immunotherapy ie my treatment options are very limited. This was a really crappy way to find out such bad news. They then booked an appointment in the middle of the day on my child's birthday anyway, so they didn't get to do anything fun that day.

I was grateful to start chemo right away and I told the doctor that I would like a port as I previously had a clot and wasn't believed and as a result of the scarring I can't even get blood drawn from my left arm. During chemo I mentioned this to the chemo nurse and they said they will make sure I get a referall. I'd like to add that I rode my bike to chemo and back. It's important to note that I have been very healthy this whole time and strongly value being able to exercise. I am a strong and fit person and while I have anxiety around medical appointments due to my previous trauma at the hands of another centre, I also have a high pain threshold and a good understanding of what is happening in my body.

The very next day I had clot symptoms. I called the cancer urgent symptoms clinic and left a message, then prepared to go to hospital to get an ultrasound. The clinic called me back and said for me to head in 'and we will give you an ultrasound'. Hopeful that I wouldn't have a repeat of my traumatic experience at the hands of the other clinic, I headed in. But unfortunately the Doctor was dismissive, told me it's not behaving like a clot, asked me if I bumped my hand or got a sting! I said this is exactly what happened last time I had a clot and was dismissed, and I want an ultrasound. The doctor told me that they would only refer me privately as it is not behaving like a clot so they can't refer me publicly. I sat there for thirty minutes and finally I was giving up and leaving as I felt this Doctor is going to harm me and I need to see someone who will sort out the clot. I started leaving and they called out to me and handed me a private referall and appointment for the next day in the afternoon - more than 24 hours later. And once again I'm scrambling to find last minute child care. They told me to take Panadol and use an ice pack!

I left in tears and distress that once again a Doctor has treated me like I am not worth listening to.

The next day at the scan we found of course it is a clot. I went to my GP for care because I knew the hospital weren't going to follow me up. They didn't contact me until the following day mid morning. During that phone conversation I was told I had a port booked for the next day at 2pm! You have got to be kidding me, another appointment with less than 24 hours notice where I am scrambling to find childcare? My poor kids are so over it at this point.

The hospital moved it to Monday morning which I am appreciative of, but then booked an oncologist appointment for me on Friday. When I told my child I wouldn't make it to their sports carnival they cried. My kids have missed so much due to the disorganisation and lack of communication from the hospital. Why should my kids keep paying for this? I called the hospital in the morning and left a message asking to change the oncology appointment to telehealth and went to their sports carnival. No one got back to me about the oncology appointment.

I tried to contact the customer service liaison about the Doctor that was dismissive about my clot and have heard nothing back.

I am too scared to go back for the port and chemo. What if there is a complication - the doctors won't believe me again. And then what?

I am seriously questioning if having treatment is going to shorten my life rather than lengthen it, and I have even less faith in doctors than ever.