Clinical trial begins

Since the last post about my health, I’ve had a bit going on… mainly tests to see if I’m eligible for a clinical trial.

During the appointment with my Medical Oncologist at Peter Mac, where I was diagnosed with “secondary breast cancer”, it was mentioned that there was a trial taking place at the Austin Hospital and my oncologist thought I should go talk with them to see if it was something I’d like to join.

So that gave me a choice – stay at Peter Mac with the team that I was just starting to feel comfortable with or try my luck at the Austin Hospital.

The paperwork for the clinical trial was 25 pages of tests and side effects. My partner and I asked a few medical friends to look over it and point out anything we may overlook. This was a two week process of reading, researching and asking questions.

After meeting with the Clinical Trial Coordinator and the Medical Oncologist at the Austin, I decided to at least go through the screening process and see if I was eligible. How would I know if it was an option and how could I decide, if I didn’t have all the information?

The screening process took another 2 weeks. CT scan, bone scan, bone density scan, blood test, urine test, ECG and echocardiogram. This was a few hospital visits, but also just a tough time mentally. Feeling like I wasn’t yet a patient at the Austin and I was no longer a patient at Peter Mac. I was also no longer a person with curable cancer. Where did I belong in all of this? Where was I?

I did manage to find a physiotherapist (private) to help with my arm movement and cording from the lymph node removal. Yep, I still had issues from my surgery to deal with. I also started to see a psychologist (through Peter Mac). These two people kept me in check and helped me to deal with the physical and the emotional repercussions of cancer. They helped me to cope with this strange life transition that I was experiencing.

I also had some family visits (including my partner’s family) during this time and that was a great distraction and a great support. It helps put everything into perspective when you get to share such special moments with loved ones.

By now, I had decided that if I was eligible for the clinical trial, then I would participate. I’d already gone through the many tests, so it would get a little easier from this point. And so I was accepted and I began the trial on Tuesday 5 April.

Now I have an injection every 28 days (goserelin) and take some tablets daily (letrozole + trial drug). I visit the Austin Hospital every two weeks for progress tests. The medication is cutting off the oestrogen hormone in my body and so I will go through early menopause. I may also be receiving the trial drug which will hopefully stop the cancer from growing. Otherwise, I may be receiving a placebo drug which does nothing. Either way, my cancer’s growth should slow as it’s not getting the hormones that feed it.

It’s early days and apart from some mood swings, I’m feeling pretty good. I am starting to look ahead more than a day or a week. All in all, I’m feeling more positive and more like myself, not that I ever stopped, but I do think there has been a shift. Here’s to beautiful beginnings…

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Update to NiB Post

Since the last post, written by my partner Jen, we were approached to start a petition. This petition has given us a platform to tell our story and given people a chance to support us in a call for NiB to change their basic hospital policy. We have now reached over 4,000 signatures!

From this, my partner was approached by NiB’s customer resolutions team, as well as one of their senior group executives to discuss our concerns. Choice magazine issued a report which confirmed that NiB’s Basic Cover is a “junk” policy. This week, our story was also shared on The New Daily news website.

All of our concerns have now been put into a seven page letter to the federal Health Minister, the Hon. Sussan Ley and it will be interesting to see whether her office provides us with a response. Our story is particularly timely because the Department of Health has been investigating issues surrounding health insurance since last October.

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