Today the world arrives in skinny bands that
I can barely process so I drop into
harbour beauty to block out the pain

A nurse changes the dressing and
the clouds gather roads and garden gates
I lip read the cloud stories
and remember the comfort points

 

Paula Green
from ‘The Venetian Blind Poems’

 

Today blood cancer treatment is on RNZ Morning Report, specifically bone marrow transplants and a particular case, because the prolonged waiting time is putting more and more lives at risk.

Heartbreaking.

In 2022 I received a bone marrow transplant at Auckland Hospital, within the ideal time. For over five weeks, I stayed in my single isolation room, and saw my two nominated family members each day. I was cared for by an extraordinary team of doctors, registrars and nurses. A young anonymous donor had gone through the necessary procedure to gift me some of their healthy stem cells. Yes, this was a physically challenging time, but I look upon it as incredibly special, a time that showed me life through the gift of kindness, skill, care, patience, aroha. I know it sounds weird, but I loved this time, this life-gifting time.

Bone marrow transplant patients need ongoing care, especially those, such as myself, who develop Graft versus Host Disease, when your cells go into battle with the donor’s incoming cells. It is tough, it is tiring, it is often hard to diagnose clinically, and there is no clear end date. It may last years. I continue to take a strong immune-suppressant drug that comes with its own downsides as well as vital life-saving benefits. So yes, I am still dependent on the expert and caring support of an extraordinary haematology team. But as someone who has been visiting the day ward for over two years now, I am witnessing a system stretched to the limit.

Heartbreaking.

The past four or five months have been the toughest since my time in hospital. Not because of the daily nausea, pain, weight loss, fatigue and three or five hour sleeps. I manage well. I have developed ways to do this, ways to best use my tiny energy jar and to find joy each day. Especially through my connecting blogs, my own writing, by cooking nourishing meals that I eat like a sparrow, by falling asleep to audio books every afternoon. But when three months of antibiotics and treatment from my dedicated and caring dentist didn’t fix a chronic dental infection, I needed molars removed at Greenlane. And it felt like tipping over my coping edge.

Ah, the tipping edge. Creating my Janet Frame feature helped. Creating my next poem theme (Sun) helped. Talking with my partner, daughters and a dear friend helped. Sending an email to another dear friend helped. Zooming with my psychologist helped. It was spilling the beans on my dark time. Usually I want to celebrate books, writing, poetry, children’s writing . . . not blather on about health challenges.

Last week I had several important hospital appointments, and again, I am mindful of a stretched to the limit health system, and how I am still dependent upon it. After all this time, when I am in a miracle remission, I am still needing help, and I am still getting it. I am still getting this incredible help.

I hear the story on Morning Report, and how tough it is for patients, whānau and staff now, and my heart is breaking.

My heart is breaking.

I don’t want to hear a Government fudging numbers, dodging hard questions, having questionable priorities. Put your words where our breaking hearts are and do something for our vulnerable people, make a difference to our wellbeing, and most importantly, place the wellbeing of our planet at the foremost of your doing.

My heart is breaking.

Catastrophe and calamity slip through
like fettucine but I close my eyes
to the unbearable pain of humanity
and picture myself on Te Henga’s tideline

A nurse asks if I need anything
even when she is rushed off her feet
I sip Chia Sisters ginger and turmeric juice
hoping beyond hope for world peace

 

Paula Green
from ‘The Venetian Blind Poems’

 

FROM RNZ:

Cancer Control Agency regional manager Cushla Lucas said: “We’re very concerned that people aren’t getting the treatment in a timely way. We’ve spoken with many people with blood cancer and whānau and heard stories of the impact, both emotionally and on their health, as well as on the staff working in transplant units.”

Leukaemia and Blood Cancer NZ chief executive Tim Edmonds said there had been nearly 15 years of under-investment in transplant capacity, “while also knowing that this increased demand was coming”. With the current financial headwinds, he feared Health New Zealand was even less likely to sign off on the full business case, which would cost “tens of millions of dollars. We understand they’re looking at a proposal to partially increase resourcing. Such a piecemeal approach was not good enough, because the queue would just get longer and longer. “We’re used to the term ‘wait list’ being used for elective surgery and hip replacements or cataracts, but this is a matter of life or death for blood cancer patients. They’re having to wait months, and in the meantime they’re relapsing, their cancer is returning and it’s putting their lives at risk.”