My husband Michael died on 14 Nov 2010, only 6 months from being diagnosed with metastases on his liver in May 2010. He was 68.
We live in Forest Lodge, about 10 minutes from the palliative care team at RPA so we were very, very lucky. We saw someone from the team about once a fortnight during his last few months and then in the last week they came on most days. They were completely splendid. For us - Michael, our daughter, Mollie, and me, palliative care made the difference between a good death, and a NOT good death.
The story starts in 2007, when Mike had funny vision in one eye. He went to the optometrist who sent him straight to an ophthalmologist who said ‘you’ve got a detached retina, tomorrow morning be at Sydney Eye Hospital’. But the specialist there said ‘Yes, you have a detached retina but it’s being caused by an ocular melanoma’. We were shocked.
Straight to our GP. It was very nerve wracking but the x-rays and scans showed no obvious metastases. We were overjoyed. Then to another specialist who irradiated the melanoma and it gradually disappeared. He lost a lot of the sight in that eye but Mike was happy as it was better than the alternative.
That was 2007 and for the next two-and-a-half years he was fine. Life went on normally and in 2010 we went to Paris to visit Mollie who was studying there. It was her 21st birthday. Mike started to feel sick and I was petrified because I thought it had metastasized. He said don’t be ridiculous, I’d be dead by now if it had. We came home and went to the GP. Within a week we were at the Cancer Centre at RPA where he was diagnosed with a metastasized ocular melanoma; the cancer had gone to his liver. As soon as it was diagnosed, Mollie came home from overseas and we started chemo.
By August/September, when he was on the 3rd round of chemo, the oncologist recommended a referral to the palliative care team. We said fine but they came round straight away which was very confronting because he wasn’t too bad, and we were still going for the chemo. We found ourselves sitting around the table with a district nurse and a palliative care specialist and we said “gee we feel a bit funny because we know what palliative means”. But they told us what they would be doing and said it was their job to make Mike comfortable, to make us both comfortable really. We agreed that they’d come once a fortnight because we were managing well.
They talked to us about the progression of Michael’s illness. I was terrified about seeing him in pain. I didn’t know how I would handle that. When Mike wasn’t there one day, I asked them about what to expect and they reassured me that Mike would not be in pain and that he would slowly drift off.
Probably one of the worst days was when he was on the third round of chemo. Our oncologist said that it wasn’t having an effect and there was no point in continuing. She gave him a hug and a kiss and we walked out of the hospital. I remember Mike saying “How can anyone do this alone?” So we came home and started getting ready for him to die.
Around this time Michael said that he wanted to die in a hospice. This was a terrible shock. I was devastated as I knew he detested hospitals. So one day I said to the palliative care nurses “look, he really doesn’t want to go to a hospice. I can’t see any problem with him staying home”. They agreed and spoke with Michael alone for half an hour. They came down and said ‘it’s ok, he’s staying here. He’ll die at home. This was fantastic. He didn’t spell it out to me but it was the palliative care nurses who changed his mind.
About a fortnight before he died one of my close friends moved in so I didn’t have to cook or do anything. I could just be around Michael who was spending more time in bed. In the last week the palliative care nurses were coming most days. Mollie was in Canberra and her last uni exam was coming up but Mike said “I don’t think I’ll last long that long” and I said, “I don’t think you will either darling”. I called Mollie so she came home on the Friday before he died.
Mike and I slept together in our bed every night. He was getting weaker and weaker and was sleeping a lot, but he wasn’t in obvious pain. On Saturday morning, a palliative care nurse came and said he mightn’t be able to swallow the morphine anymore so she put a port into his thigh and showed me how to inject into it. She also left me a number of morphine syringes.
In the end I didn’t need to call the palliative care team because they had completely prepared me. I never needed to inject the morphine because Michael could still swallow but I was completely confident that I could’ve.
The night before he died Mollie and I were just sitting on the bed, with him, talking. At one stage we had to move him and he said “Oh you’d make a fine couple of nurses” and we were all laughing. He was drifting in and out of sleep.
I slept with him all night and about 6 o’clock on Sunday morning I became conscious that his breathing was changing. I had my arms around him saying I love you, I love you because I thought he might hear me. I didn’t call Mol. I just kept on saying I love you, I love you. And he just stopped breathing.
That was a good death. I remember thinking this is how I want to die too. At home in the arms of my beloved.
The palliative care nurses made Mike’s wonderful death possible. They gave me confidence, and because of their expertise and experience they were able to reassure and convince him, when I couldn’t, that dying at home was the very best option. My memories of his death are full of love and comfort. I am forever grateful...
When our loved ones are diagnosed with a terminal illness they deserve the best possible care and support. But, right now, that’s not always possible because there's a shortage of specialist palliative care in NSW. That’s just not good enough. We need the NSW Government to fund an additional 139 doctors and nurses and to meet the palliative care needs of Aboriginal communities.