Breast Cancer Research Centre - WA

Life on Trial

Life on Trial

So here I am again, wide awake, blinking in the darkness of the night. This time, though, I am not pacing or sweating or clinging to the toilet bowl or trying to negotiate another side effect.

This time I recognise it is only the benign, somewhat privileged, effect of jet lag.

Treatment soon after landing may have exacerbated the lag; my body and busy, busy mind are finding it hard to shake off the confusion of day versus night. I have just returned from a glorious overseas holiday with my adult daughters. Wonder-filled sights, so many new places explored, characters met, constant chatter, great joy and lots and lots of laughter.

We squeezed in 20 days around my current 21 day treatment cycle, as a participant in a clinical trial for a new metastatic breast cancer drug. Planning this trip involved multiple schedules – those of each of my daughters, that of Professor Chan, permission from the Trial Sponsors and the schedule. This holiday was not feasible in January when a progression in my bone metastases was detected, and definitely not in February – March when my body was adjusting to the new drugs. Then suddenly, an adventure while on trial was possible: thanks to persistence, expert monitoring, and the containment of a long term relationship with the Professor: faith in her guidance and knowledge of the remarkable new advances in medical science.

This is my third trial. The first began when metastatic disease was identified in 2009. Once the preliminaries – scans and bone biopsies were done, there were 16 weeks of regular chemotherapy, with all the usual accompaniments. The next phase of living with a 21 day treatment cycle (plus or minus 3 days) and Herceptin infusions felt like a picnic! A new treatment routine developed – blood tests the day before, visits with the trial nurses collecting all the numbers (blood pressure, temperature, weight) and counting up any miniscule change to drugs taken and symptoms, then to see Arlene, then Pharmacy, grab a coffee and up to the Chemo Suite. A routine familiar to so many of Arlene’s patients, it whittled down to a short intrusion in my life – one filled with the warm smiling faces of women taking great care of me! I did this for some 4 years before there were other additions, a round of radiotherapy, extra drugs added and ultimately changes of drugs. And the constant monitoring and extra scans were critical in detecting any small change.

My second trial was all about exercise. This time just 6 weeks of huffing and puffing through an exercise programme – mostly because I chatted to the physiotherapist the whole time! The result was I felt stronger and fitter and away I went, inspired again to engage and be present in my life.

And here I am again – the 3 week schedule still in place for Trial 3, and I am past the stage requiring so many vials of blood to be taken each visit. Science has been good to me – provided me with access to the newest drugs and protocols. I manage my response to this new drug being mostly coffee, alcohol, lactose and spicy food free. Even once the jet lag resolves, I will be careful with my diet and rest. I am returning to work after taking Long Service Leave. There’s a lot to balance – aging parents and my grown family is growing again. I am joyful in the moment, full of hope and gratitude – but I really need some sleep!
Life is complicated … would you have it any other way?

– Joanne MacDonald