Palace of Care – Accelerating towards the finish line

Photo by Daniel Lloyd Blunk-Fernández on Unsplash

The poor old lady had been through a lot in recent years. Cancer had treated her harshly, and had spread through major organ systems, her liver, lung, and most of the bones in her body. A cruel disease that robbed her of her independence, and dignity. The years that she had the cancer had been relentless, multiple lines of treatment including chemotherapy, radiotherapy, targeted therapy. Despite all of them the cancer continued to progress, to cause havoc, and to ravage her body, and eventually her mind.

The past month had been the worst time of all. Her final decline started with a fall, it was not clear why she fell but she ended up fracturing her wrist. A painful injury that caused her to cry in agony. Her lower arm was placed in a cast for comfort and to give it the best chance to heal. Three days later she fell again, with her other hand outstretched, causing another wrist fracture. Two forearms were now encased by fibre-glass casts. This rendered her unable to wipe her bottom or wash herself. Increasingly dependent she had trouble feeding herself, the casts were of the light weight sort, but when your illness has stolen away precious muscle, the additional weight made brushing her teeth impossible.

Continue reading

Palace of Care – Smiley

Photo by Jacob Vizek on Unsplash

I had finally completed my examinations and could start my specialist training. I had been drawn to both Medical Oncology and Palliative Medicine from a relatively young age and I could try working in each speciality for six months before deciding which one I wanted to pursue in the long-term.

One morning during my six months working in Medical Oncology I was in clinic with an Oncologist who I considered to be my mentor. Standard practice was for me to see the patient first, then present the case to my mentor, who would then come and see the patient.

A big friendly smile in the form of a slim 26 year old man walked in with his pregnant partner of similar age. They were accompanied by his cousin who was in his 40s. Smiley’s story was a sad one and had begun eight weeks prior to his clinic appointment. Life was good, he had a steady income from a job he enjoyed. In the weekends he loved playing rugby in the local team. He and his partner had been together for five years and were going to take the next step. Baby was on the way, and was due in five months’ time. Everything was going well until it wasn’t.

Continue reading

Palace of Care – Two of a kind

Photo by Fallon Michael on Unsplash

He was never alone when he was young, his sister would always be with him. They started off their friendship in the womb but didn’t really see each other for the first time until they came out into the light. Ah, that’s what you look like, quite similar to me, but different. I’m the oldest out of us two, even if it is only five minutes between us. The eldest is entitled to greater respect. Their siblings suddenly had two more siblings to make up the family, a little boy and a little girl.

They went to the same schools all the way through primary, intermediate and high schools, and it was only in university that their paths diverged. Ending up in different careers and then meeting their partners, always maintaining the bond of their twin-ship even across thousands of miles of ocean. The next generation would also have multiple births, he and his wife had a set of twins but unfortunately their little youngest did not survive. One of their biggest tragedies, the death of a child, so against the natural order of life. Life had to move on, they had the rest of their children to bring up. Life was busy with work, family was always emphasised as being the most important.

Children grow up so fast, and theirs became useful additions to society, good people that he had guided to adulthood. He was proud of them all, and then the grandchildren arrived to make a good life even better. Lovely young kids that enjoyed hanging out with Grandpa and Grandma, also lovely that at the end of the day they could be given back to their parents. Grandparents are there to provide good fun, but not to be the unpaid caregivers was their policy. It had worked so far. Their overseas daughter video-called them, they hadn’t seen her in person due to the effects of Covid over the past two years. She couldn’t contain her smile, she glowed when they talked to her. “Mum, dad I’m pregnant, it’s going to be twins!” Continuing the family tradition into the next generation. Things were really good.

Continue reading

Guest Post – Naomi’s Notes – Precious

Part 1

Photo by charlesdeluvio on Unsplash

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.” 

Continue reading

Palace of Care – Opportunity Cost

Photo by James Bold on Unsplash

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.

Continue reading

Palace of Care – Hold On

Photo by Hu Chen on Unsplash

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.

Continue reading

Palace of Care – No Surprises

Photo by Raychan on Unsplash

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.

Continue reading

Palace of Care – Father and Son

Photo by Vinicius “amnx” Amano on Unsplash

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.

Continue reading

Palace of Care – Welcome to Hospice – Part 2

Photo by Brittani Burns on Unsplash

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.

Continue reading

Guest Post – Naomi’s Notes – Doing Your Best

Photo by Thomas Lipke on Unsplash

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.

Continue reading