Guest Post – Naomi’s Notes – Precious

Part 1

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At school two little six year olds had an argument.  They were both very upset when I called them over to talk to me.

I asked the first one what the problem was.

Pointing at the other girl with a quivering finger she said, amongst sobs, “she called me a F F F FAT BANANA. Why are you laughing?”

“Well,” I said, “are you a banana?”

“No.”

“Are you fat?”

“No.”

“Is it true?”

“No?”

Softly I said to her, “so darling if it were true it would be serious, but it’s not true so it’s funny isn’t it?”

I asked the other girl, “why did you say that?”

“I wanted her to be my friend but she didn’t want to,  so I called her a FAT BANANA…  Naomi,  I really love bananas.”

I smiled and said to her, “darling if you want someone to be your friend, that’s not the way to do it. First you  have to  help them if they need help, be kind to them and laugh at their jokes.   Then they will want to be your friend because they can see that you are a kind and caring  person.” 

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Palace of Care – Opportunity Cost

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In my misspent youth I studied Economics during high school and into my first year of university. Opportunity Cost is the cost that you incur when you make a choice. Because you have chosen A, you miss out on B, or vice versa.

The New Zealand school ball is an important event in a young lady’s life it is a coming of age event. The proud parents will see their daughter off for her first school ball. This can be a big deal especially for the father. The ball was scheduled to take place in a week’s time. Our patient had his blood tests done as he was looking pale, was fatigued, and slightly short of breath. Symptoms and signs of anaemia, low red blood cells in his body. His counts were dangerously low, and if we didn’t do something about it, he was at risk of dying before the day of the school ball. He really wanted to be there for his daughter, it was his only chance at providing the whole family with this milestone memory. He agreed to our plan of transfusion, a top up to give him the best chance of being there for his daughter.

In the days after the transfusion he was able to walk further without losing his breath, his thinking had sharpened, almost as good as normal. Looking in the mirror his skin tone no longer reminded him of the vampires from the Twilight series that his daughter and her friends all loved. He would make it to the ball, and the whole family was excited about it again. They could proceed with the pre-ball party at home, he would go home for a few hours of leave. A nice dose of normal family life to break up his cancer story if only for a brief respite.

After the weekend the pre-ball photos were shared with us, and they were lovely. The only clue to his illness was that Dad was thin, and looked tired in the photos, otherwise a beautiful New Zealand family celebrating a special night together at home. A snapshot frozen in time, if only the image would stay like that, no changes occurring, no one deteriorating, no brightness fading from their eyes. But that is still life, real life is about the changes that occur with each passing minute, hour, day, week.

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Palace of Care – Hold On

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We’d been trying to admit her for weeks, but she had not been keen. We had her on the admission list for a whole week but she said that she had to sort out something for her children and couldn’t come in. I thought that it might be an excuse, as a lot of people are still scared of hospice. Most people have not had anything to do with hospice but they may have some pre-conceived idea of what hospice might be. Often this is inaccurate, and can generate a lot of fear.

It took some convincing by the hospital palliative care team before she would finally agree to coming in to hospice. She was still nervous but her favourite cousin had promised that she would go in with her. They had grown up together and they were best friends, but this had been taken to a completely different level once the cancer diagnosis had been made five months ago. Something was wrong as she had lost a lot of weight, without trying to. Life had been busy for many years with her five children, and her partner could not always be counted upon. It was her cousin who had attended all the Oncology appointments with her. Her cousin had been there for all the chemotherapy sessions. Having her cousin accompany her to hospice was comforting and if there was anything scary, she would be there for her.

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Palace of Care – No Surprises

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Is it the medication making him drowsy, there’s been a big increase in the medications since yesterday, I want them cut back down again.

I’m really worried about your Dad. I don’t think it’s just the medications changes causing him to change. His pain and nausea have worsened a lot over the past three days. It’s a shame as he was doing so well the other day.

It’s not right, he should be getting better, not going backwards. You know he was an alcoholic, I’m worried that he’s become addicted to the pain killers. He hates being confused, that’s what he was like when he drank, he really doesn’t want to go there.

I don’t think that addiction is the problem here, his pain and nausea are worse, I think it’s the cancer causing this. If I decreased his medications now, he would become much more uncomfortable. I don’t want him to suffer.

What about his radiotherapy appointment, that will give him a boost right?

He’ll get the side effect right away, but the benefit might not occur for some weeks. I’m really not sure if he has weeks left to live. I’m worried that if he keeps on deteriorating at the same rate, that he might only have days left to live. We usually say if you are changing over months, you might have months left, same applies to weeks and days.

Really, you think he might only have days left?

Yeah, so I’m not sure that he will be well enough for radiotherapy. I know he wanted it and so do all of you, but I’m not sure that he will be well enough to make the appointment.

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Palace of Care – Father and Son

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Covid 19 the gift that keeps on giving. Why does it have to be so generous? It has affected everyone and everything in the world, and the hospice is no different. We have had to impose visiting restrictions on our patients and their families in order to limit spread of the virus. Covid restrictions and quarantine requirements have led to some of the most upsetting situations that I have witnessed during my career.

When someone is dying, it is natural to want to be with them, to support them in their moment of need. They were there for you when you needed them the most, and you want to reciprocate if you can. Even before Covid it could be difficult to travel back home thousands of miles, trying your best to make it before your loved one dies. During Covid it has been that much worse.

My patient came in because of severe pain, a common reason for admission for many of my patients. His wife accompanied him, and they both looked exhausted. His pain had been poorly controlled over the weekend, and the nights had been especially long. The medications did not seem to work for long, they gave him a brief period of respite before the pain would come right back. It was almost cruel to be granted that small packet of relief, and then it would be roughly dragged out of his grasp again. This cycle repeated itself over what felt like a long two days. By Monday they needed help and he was admitted into hospice.

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Palace of Care – Welcome to Hospice – Part 2

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She had spent her whole life looking like her sister. They were always compared to each other. The older one is taller, the younger one can sing better, the older one can run faster, the younger one is better at Math. Despite all of the comparisons the two sisters had always gotten along fine. Their relationship had started nine months before they were born, they hadn’t just been room-mates growing up, they had actually been womb-mates right from the start. Identical twins who looked the same on the outside but were actually different people. Their life paths had followed each other closely before wildly diverging at the age of 26. The older one became unwell two years ago, the younger one carried on with her life.

The family had been scared of hospice, they didn’t really know what it was all about, but most people associated it with death and dying. Not something that is usually discussed in the Island culture. They resisted the hospital palliative care nurse’s attempts to send them over. What changed the older one’s mind was another patient on the same ward. A Maori lady who had been in hospice before. She had told the family what it was like, that it wasn’t a scary place at all, that on a previous admission, that they had been kind and were willing to do things in the traditional way. This lady was actually going to be heading over to the hospice that afternoon. She convinced the older one and the family that going to hospice to control symptoms would be a good thing.

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Guest Post – Naomi’s Notes – Doing Your Best

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It was three weeks before Christmas and she asked me to visit her in Wellington, preferably before Christmas. I was leaving for India the following week and no cheap flights meant it was not possible. I phoned her and told her I would visit when I returned from India.  

Whilst in India, my Teacher got an email saying she had been admitted into hospice.   I was unsure that I would get back in time. However, my Teacher was confident that it would be okay. At least I was in one of the holiest places and attending a prayer festival.  I sponsored some group prayers for her as well as doing my personal prayers for her.

I met the Tibetan family that my friend sponsored. They were very grateful for her kindness and generosity and very sad that my friend was terminally ill.   They requested me to take a beautiful woollen shawl back to New Zealand for her. 

Within a few days of arriving home, I flew to Wellington to see her.  She was out of hospice and back in her own home, being well cared for by one of her sons and her sister.  Upon arrival, I was greeted by a much thinner version of my friend who was still quite mobile due to the loving care of her son and sister.  I stayed two days with her.

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Guest Post – Naomi’s Notes – Saying Goodbye

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She was a solicitor used to dealing with other people’s problems and separating the emotion from the facts.  But today she looked tired, worn out, and close to tears.

“Noticed your not your usual self what’s the matter”? I asked.

“I’m caring for my dying mother at home and have been doing it for the last two months. I need to get home as quick as I can”.  

“Do you have anyone helping you”? I inquired

“Sometimes my sister helps but she has three kids. Mostly it’s just me and mum, I had to move in with her temporarily to take care of her because she couldn’t manage on her own. I’m not sure if I can manage.   I sleep in the armchair next to the bed”.  

“Would it help if I sat with her while you do your work at home”?

A smile fleetingly replaced the stress on her face.  ‘Here’s the address she said and my number if you get lost”.

“Ask your mum if I can come and see her, phone me if she says yes, no problem if she says no”.

Later that evening she phoned confirming it was okay.

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Palace of Care – Like father, like son.

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The little old Chinese man, looked so pale, he didn’t know what to do with himself. His short-term memory had been impaired for some years but had worsened in recent months as he deteriorated.

We both used our second language to communicate with each other, Mandarin. Both speaking with thick accents, but able to understand each other. His supportive daughter had come over from China to look after her parents. They had lived in New Zealand for over twenty years.

He had always been terrible at reporting his discomfort. His daughter talked about when he had appendicitis and had not told anyone until he almost died of an intra-abdominal infection after his appendix had burst. His stock answer would be to say, “I am fine,” but his body language was a give away for his wife and daughter. He didn’t let anyone know that he had painful shingles until he was found writhing in bed, crying because of pain, telling his family that the pain was so bad that he wanted to die.

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Guest Post – Naomi’s Notes – Time

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He was 84. He had been sick for a long time with his liver and recently had his gallbladder removed.  He was tired and grumpy as he struggled to make sense of the illness.   He was tired of taking medicine and being unwell. It was a far cry from the strong funny man that used to make his family laugh.

As a father when he made up his mind to do something he would always follow through.  Like the time he decided to take a night class in pruning fruit trees.   He would come home from class and prune all the fruit trees which were quite substantial.  The trees all had a slight lean to them and his family was not convinced he passed that class but the trees bore great fruit.  

He decided he wanted to become a welder so he enrolled in a night class and completed the course.  His family thought it was an extension of his pruning class because he did some welding maintenance around the fruit trees.  When he wasn’t watching, his children used his welding hat to play Darth Vader in Star Wars but he used to laugh when he thought they couldn’t see him. 

It was early morning when the phone rang and she knew immediately something was wrong.

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