Letting hope in
Given the timing with Matariki and the formal acknowledgement of the Māori new year with a public holiday it seemed right we were sitting by the fire pit reflecting on the past couple of years.
Adam got his diagnosis of cancer in November of 2020. Several scans and appointments later and on Christmas eve the multidisciplinary meeting discussed the best plan of treatment.
Chemotherapy started in February 2021 and after 6 cycles, there was a slight interlude and then 20 sessions of radiotherapy. Wrapping up in August 2021, the work really started. The symptoms and side effects built and lingered. The impact of the ongoing hormone treatment results in loss of muscle mass, strength and reduced energy.
While a follow-up scan showed a good result from the treatment, something uncertain had shown up in the lungs, a few more appointments and scans, and this reassuringly looked like it was associated with a chest infection, that had hit at the end of chemotherapy.
While the 3 monthly blood tests were equally reassuring, odd aches and pains remained and caused concern. After sitting with the pain for a while, we reached out and a few more scans were performed.
Thursday morning we sat waiting for the follow-up and the results of the latest MRI.
We were told, nothing could be found that was of any concern. Then we were walked through the MRI and the report with a reassuring nature and informed that a good result from treatment was seen. To hear the words ‘PSA is still undetectable’ and that we would now discharge you, for the GP to continue the follow-up and monitoring.
There was this load lifting, a relief, a pause and a moment to breathe.
Before the appointment, I reflected that this would never end. Even with good news, we’d be back. It will be back, the blood test will change. I would be sitting again, watching and walking alongside, the bad news and the tests and the treatments and feeling helpless.
For a moment, I had to let the hope back in.
Sitting by the fire we talked about the moments of darkness, those truly awful moments in the beginning. When nothing was fast enough, even though we knew it was fast. Wondering how anyone who doesn't understand the system can possibly bear the agony of waiting and not knowing.
We remembered the people who had made the difference. While technical skills, amazing drugs and treatments delivered safely are essential, it was the moments of connection that made the difference. Being seen as a human. As the partner, walking alongside Adam, I was rarely acknowledged within the hospital system. Adam reflected on how important that person is, how the support is essential, and how much more tolerable things felt while I was there.
As the fire crackled and we sipped champagne in the darkness, I asked Adam what he would tell himself if he travelled back to the beginning.
Don’t let it consume you. Hold onto the moments. Be present and realise that this is life, here and now. Don’t sweat the small stuff and most things are small stuff.
He reflected on the perspective it has now given him. How having spent years looking after people a number of them with cancer, he sees more clearly the lack of empathy and connection in the busy shifts of today. How having values is only good if you put them into action and seeing someone as a human being with all they carry, is so vital for care to be of value.
We pondered on the position of being on the other side and what we do with that now we have it. How do we share the story of what matters? Particularly at a time when the healthcare system is under pressure and facing great change. Is this the time for that story? Will anyone want to listen?
For me, I had to ask how to let hope in.
I looked back and saw how my life had changed and how it had stayed the same. I held onto hope throughout. One of my core values is hope and yet here, now with this good news, I struggled to let the hope in. I was scared to be hopeful. I was reminded of what Austin Channing Brown talks about in the ‘shadow of hope’. I began to understand more viscerally that hope can be a step that seems too far away. That hope comes with vulnerability and loss, it’s wrapped up with joy and looking forward. I realised that my relationship with hope isn’t one-sided, it’s a complex spectrum throughout my whole life.
The celebration of Matariki this year has brought hope. Hope for a continuation of a movement that will address the effects and impacts of colonisation. Hope that will let people rise. Hope that the wisdom of Te Ao Maori will be listened to, embraced and given a chance to shine.
