This week I am wearing my Hauora Tairāwhiti District Health Board hat.
Around our table we read a lot of reports filled with technical language and pages of numbers. ASH rates, falls, targets etc. The data is very important, and when paired with lived experiences, can be powerful.
Whether it’s an X-ray, visiting loved ones, or being admitted, all of our board members have some level of hospital engagement. Up until recently I thought that level was going to be the extent of my foreseeable engagement with our hospital.
And then my sister got cancer again.
She was living in Lower Hutt, receiving her treatment in Wellington and during my visits I could see she was weary. She was taking public transport for two hours to her treatments, which could last up to four hours, including wait times. Then after being pumped full of chemicals she would take her two hour trip home.
My mum and I were able to convince her to move back to Gisborne on a trial basis. She came home and started treatment. We immediately saw an improvement in her! There was more colour in her cheeks and a sparkle in her eye. All of that was missing while she was in Wellington. She told me it was the five-minute drive to treatment and having on-to-it hospital staff that were ready for her when she went in. “They remembered my name!” she exclaimed to me.
I knew at this point that she was receiving treatment in the right city, at the right hospital. I was ecstatic because we were going to save my little sister’s life. She hadn’t moved home fully by this time but I could tell she wanted to. And as her older brother, I wanted her to move home too.
Tragically, right before we finalized her move home my sister was diagnosed as terminal. Her cancer was so advanced that even undergoing treatment she had little to no chance of survival. So like many people we all know, she declined to have any more treatment.
My sister passed away on the 16th of August, 2018, about five months after being diagnosed. And I miss her so much.
Those final months of her life were made liveable by Hospice and the staff of Ward 5. My sister wasn’t the easiest patient. She would run away from the ward to go sleep at mum’s or go to a party or just sit at the beach. She would do things to fill what remained of her life, with living.
And while she was driving everyone up the wall, the staff were liaising with mum about my sister’s care and having very amenable conversations with my sis to try and coax her back into the Ward. Knowing full well she was probably going to say ‘No!’ It was a stressful time for us, the staff understood and responded appropriately.
When my sister did go back to Ward 5, where she saw out her final days, she only wanted her loved ones to wash, bathe and care for her. The ward respected that. Everything we wanted to do to make my sister comfortable, the Ward tried to make happen.
You can’t capture any of that in a report. I have heard all the jargon before, FCT, clinical costs, wait times, treatments costs etc, but my sister’s experience will be what I remember every time I sit at the board table and read the technical language and pages of numbers.
On behalf of my family, thank you. You make a difference.
Rest in peace, my sister. I love you.