Philip Newton

Hello everyone,

Louise here.  My beautiful darling husband Philip passed away on the 26th July 2025 after struggling for 18 months with AL amyloidosis.  He leaves me, his daughter and his beautiful granddaughter whom he idolized and she idolized him.

He got ill at the end of 2023 and went to the doctor. Had lots of tests, they didn't find anything wrong, October 2024, he deteriorated rapidly, ended up in hospital over  the Christmas and New Year period. Then February 2025 we got the awful news that he had AL amyloidosis.

To say we were shocked and obviously very upset, is an understatement. But I was prepared to do everything I could for him. Attending a Zoom meeting with the AL Amyloidosis NZ Support Group gave me hope, a reason to smile and I even told my darling Philip that in 2 years he would be walking around the Mount.

The amazing wonderful specialist we had and said " I love your enthusiasm but remember we diagnosed him after 18 months of his illness."  At that stage I didn't care. We had been together for 32 years and we were going to fight this together.

It was of course tiring getting up at least twice a night to clean him up after terrible bouts of diarrhea. But he was my husband and I was determined to care for him. I had to work 40 hrs a week and then tend to him but that’s what you do for someone you love. We did get 5 mornings a week care for him so they could shower him. But if you knew my husband, he was a very proud man and didn't like people fussing over him though he did accept it.

The night before he passed, he was so sad. He was having chest pains which I didn't see, (for which I am also glad because he probably would have passed in the hospital and I would have hated that). We had talked about 24 hour care for him and he sadly agreed but he wouldn't have liked that. I kissed him, said our usual thing we always say to each other, " love you mostestestestestest" and tucked him in to bed.

The next day he didn't get up like he usually does for his pills. At 8am I found he had passed away. He was still warm so we believe he may have passed away about an hour or so before I found him.

Do I feel guilty? Yes absolutely. My head is spinning with

1) Did he ring his bell and I didn't hear him?

2) Did he call out for me but because his voice had been attacked he couldn't yell too loud?

3) Did I upset him by talking about the 24 hour care?

Did he think I was just trying to get rid of him? Everything I did was to make him happy and comfortable. Did I fail as a wife?

Now to the angry side of me. This fucking disease killed my husband. He was an active man, running after racing cars, jet boats, he was in a club called the rescue crew who help with cars and boat races. He was a lions man.

He won lots of competitions; Suzanne Paul's make over challenge, Mr Plunket, he was on good sorts, he was my granddaughter's role model. He supported my daughter when her husband committed suicide 13 years ago. He was loved by so many people. So why out of everyone was my husband attacked when he would never hurt a fly. He used to mow the neighbour’s lawns. He would help some stranger if they needed help.

So what can we do about it? The neurologist and the specialists at the cancer centre were all stumped. They have never heard of this awful disease.

Mr. Ollie Brake who is an amazing man sent me a beautiful message after my husband died and said it had left a huge hole in their profession and they need to do more research. But what can we do as a community? I am a humble woman, I have no money, I am not brainy, I have been a ECE teacher for 30 plus years but I want to do something so that no one else has to go through what we went through. We endured 18 months of constant appointments.  I watched my husband cry, and I saw him slowly shrink from 140 kg to 84 kg. My husband never cried although he had a soft heart but he cried and kept apologizing to me.

No one should go through what he went through. It was heart breaking and I would often wear "my mask" and be positive in front of him and cry heaps when I was by myself or at work I was always breaking down. Watching him have lots of horrible tests like the bone marrow biopsy and lumbar punch.  I watched him trying to be brave.

What can we do? What can I do? Talk to the media? Have a public meeting? Call a meeting with the specialists, neurologists? Something needs to be done.  I will never get my Philip home and trust me that's so hard to believe. My days consist of waking up every morning, crying heaps into my pillow, then getting up to try face yet another day without him knowing he won't be there to smile at me when I get home.

BUT!!! We have to do something. Because no body, NO BODY should go through this, nobody!

Kindest regards,

Louise Newton