Humbled and embarrassed by generosity

Former healthcare worker Sue Gunn is now on the receiving end as she lives with multiple myelomia - a terminal blood cancer. Photo / Dean Taylor

At 65 years old, Sue Gunn didn't plan to retire from her job as a caregiver, but she has. She certainly wasn't thinking about the end of her life – but now she knows she is dying.

Sue has worked in healthcare all her life, but when she was feeling some pain in her neck and shoulders of her own at work just over two months ago, she initially ignored it as she thought it was simply a symptom of working too hard.

But the pain got worse so Sue visited her GP. Soon after a text came to her phone when she was at the movies with her granddaughter – and it was alarming.

She had to get home straight away as a St John Ambulance had been called to get her to hospital.

Sue was diagnosed with multiple myeloma – an incurable blood cancer.

The pain in her neck and shoulders had moved down her arms and to her hands. Sue had numerous tumours in that part of her body and they had caused a T1 spinal fracture and sensory nerve damage – peripheral neuropathy - which means she had no feeling in her hands.

Nine weeks down the track as you read this and Sue is basically housebound, with limited mobility and struggling to do basic tasks because of her hands.

She says she forgets every now and then, and so far has dropped and broken plates, mugs and glasses, plus her iron, because she can't hold them.

Her husband Steve works as a butcher for Greenlea – a job the couple now depend on as Sue is spending nearly $2000 per month on Lenalidomide and vitamin C infusion treatment to help keep her going. She is also on a cocktail of other funded medications, but says she is over the threshold so has to pay some pharmacy charges as well.

Thursday's Pharmac Budget announcements didn't offer any financial help for Sue and Steve.

Her pain is still extreme, and she hates being on the other side of the medical system.

"It feels wrong for me to be getting care, when all my working life I've been giving it," says Sue.

But this isn't a story about Sue's plight – she contacted me because she felt humbled and slightly embarrassed about the amount of generosity people are showing and wanted to pay tribute to those people.

Her friends have told her it is payback – so enjoy it.

I told Sue I thought she was incredibly brave. She acknowledges she feels as though she has gone from a healthy, happy and active person in society to an old stay-at-home woman in the space of a few weeks.

But she hasn't lost her sense of humour.

After the first interview last week, Sue emailed me on the weekend with so much information she had forgotten – memory loss being another outcome she's coming to grips with.

Last week was the first time we had met, but at the end of the email was a bit of a personal comment that was lovely, followed by "I can say things I feel without embarrassment, since I'm dying. LOL."

She's also waiting for a sign to be finished for her new mobility scooter, because she admits she's sometimes been a bit judgmental about healthy-looking people getting about on one. It reads "Not lazy, fighting cancer."

The generosity started when she first got the text at the Regent Theatre.

Sue and her granddaughter had been dropped off, and Steve was coming back to get them at the end of the movie. But the call came before the movie even started and she couldn't get hold of her husband, so called T.A A2B Taxis.

Sue says the driver, owner Mike Lewis, could tell she was distressed and would not take a fare.

When they got to her home she didn't have a key, so Mike helped get her comfortable on the patio and then came back about 30 minutes later to check she was all right.

She had all manner of tests, so while she was waiting for her biopsy results, she and Steve decided to have a few days away.

Their cat went to Pirongia's Brackendell Boarding Kennels and Cattery as usual, and when the owners heard Sue's story they wouldn't charge.

Clarke Devoy of Devoy Signs is making the aforementioned sign for Sue's scooter – and he won't charge either.

The next kindness came when Sue contacted Eden Orchards about their natural juices.

Sue wanted to know if cherry juice and blackberry juice would help with nausea after chemotherapy. She knew she needed to hydrate, but was sick of water.

The company wasn't sure, but sent a carton at no charge, which arrived the following day. Sue says it not only helps with nausea, but also helps her sleep.

She believes much of her good care is the result of having a great oncology nurse – Jo Ballard.

"Jo really looks after me and my needs," says Sue.

"I'm lucky to have her – she's someone who knows how to get the ball rolling."

Sue says Jo also makes sure other agencies are aware of Sue's needs, and Sue says even after a lifetime career in health she is amazed that care comes from places she hasn't really thought about.

The Cancer Society of Waikato/Bay of Plenty is a prime example – a non-government funded agency that does wonderful work.

"Leoni and Zoe turned up with 20 beautiful frozen meals," she says.

"They are wonderful and supportive care nurses and they are full of the right information."

The society also helps with a driver to get her to and from chemotherapy treatment.

"Doreen takes me in her own car and won't take anything in return," says Sue.

"She always asks if there is anything else I need to do while we are out and it means I can get a few small jobs done.

"She is amazing."

Friends and family also get huge thanks – colleagues from Tarahill Rest Home, especially Michelle Curran who has been hugely helpful and caring, Ness and Scott Tarrant, Shelbi Tarrant, Robyn Wyber and Michelle and Rob Kingi - the gadget man.

She is also grateful to Greenlea for giving Steve the time he needs to deal with this sudden change in our life, and mostly to her "poor husband" who "has to do everything for me as well as a hard day's work".

Sue didn't say how long she might live, nor how much extra time the drugs might give her, and I didn't ask.

"I'm staying positive, I still have my sense of humour and I have amazing support," she says.

"I can't do exercise any more, but I'll be out on my scooter, so look out for my sign and say hi."