Joanne was diagnosed with secondary breast cancer in 2017, but has since had her treatment changed due to the COVID-19 crisis.

Joanne smiling in front of the Sydney Opera House

I want to live a normal life

When I was diagnosed, I’d never heard of secondary breast cancer and I didn’t know it was incurable. My husband was the one to explain it all to me, and then to my family when I was in the hospital for 10 days after my emergency surgery.

I googled it and read an average life expectancy. It was awful, I was in hospital on my own connected up to so many tubes, and just kept thinking I was going to die in two years, and all the things I’d miss out on, like seeing my children graduate or having grandchildren. I cried for a full day.

But I decided to have a positive mindset and plan for all the things I could do. The cancer hasn’t spread to any of my organs at the moment, and I want to live as normal a life as possible. While it’s always in the back of my mind that I’m not going to make it to old age, I don’t want to spend time worrying about it.

This feels out of my control

Since May 2017, I have been treated with palbociclib and letrozole. Aside from some radiation treatment last summer, that is the only treatment I’ve consistently been on.

However, after a routine scan this March, I was told I would need to pause palbociclib for 12 weeks, as the risk of getting coronavirus was determined to be higher than that of my cancer progressing.

I wasn’t very happy about it when I was told this, and did ask if there was a chance I could continue, but it was a definite no. Everything just feels so out of my control at the moment, which is really difficult.

Then, a month after stopping palbociclib, I started getting pains in my right hip, which got progressively worse until I couldn’t walk. I called The Christie and they were concerned about possible spinal cord compression, so an ambulance was sent.

When I arrived at A&E I had a range of scans and x-rays, thankfully none of which showed any cancer progression, so I’ve been put on morphine and was discharged two days later.

Lots of others are in this same position

After being in isolation for seven weeks with my family to reduce my risk of coronavirus, I then had to spend two nights in hospital and – without being tested – I was worried about whether I may have picked it up. Fortunately, I didn’t.

Ending up in hospital soon after I came off palbociclib felt like too much of a coincidence at the time. I had been relatively well for three years on a treatment that works for me and now being this unwell, I feel like someone with cancer.

I try not to think about what will happen over the next two months, but I do worry about what my scan in June will show. There are a lot of people like me, who’ve had to pause their cancer treatment and not all of us will have good results at the end of this.

If my disease were to progress, I’d feel like I had wasted a treatment option and the time it could have given me. Striking off such a valuable treatment not because of my cancer becoming unresponsive, but because of the risk of the virus, doesn’t seem fair.

Thinking about the future

I really worry what may happen if the risk of coronavirus continues and I need to stay off the treatment for even longer. I’m just hoping that the risk drops low enough soon so that I can restart palbociclib.

I also wonder when I might start to be able to leave the house again. It seems it may not be for a long time. I don’t want to think about that too much.

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