My sister, her strength and Palliative care
Manamea Apelu-Schwalger is my sister.
My name is Lumepa, in short mepa. Ever since I can remember, I am often referred to as Mana’s sister. Her name in short is mana. Yin and yang, she wrote about us.
It is true. We are the north and south pole connected by the equator, an invincible line that nearly, though not entirely, defines our shared strengths.
When I sat up last night to try to write this, I smiled at the last laughing session my sister and I had at 3am. We were discussing politics, one of our favourite things to mind stretch about.
She broke into song as we both agreed that a certain politician should not have regretted something important he did not do to begin with.
“It’s too late to apologize.” A loud mana in the middle of the night, no birds awake, every leaf asleep and the wind was still, yet, she broke the night and our serious rant with her singing. “ It’s too late to apologize.” She stood up and danced as I burst into laughter like a silly goose.
Mana was never the quiet creek, no. She was the thundering river and the roaring waterfalls. But to know her, as you and I know her, is to love her.
To honour my sister’s many wishes I take a humble stand before you on her behalf, for the sake of her own immediate family, her husband, Su’a Alan Schwalger who is here with us today; her children, Sade, Tyrone, Zulaika, Manamea and Tuifeamalo Moanalei. Also in my honoured speaking space, I join heart with her parents, her families near and far, her friends, and strangers from all corners of the world, who reached out to her during her journey as a cancer patient. They all represent mana here with me today.
To introduce her video, I chose to include in my introduction a dear friend to us now, one of Mana’s doctors, the one I like to refer to as the humane doctor, “Dr Dyxon Hansel”. I asked Dr Hansel to help elaborate on the technical things only he and mana understood because she had mastered the language of cancer terms herself. I am still struggling with the terms vasectomy and mastectomy.
But I wanted to say a few words on Mana’s mission on creating awareness for cancer care in Samoa, for healthy living, for empowering Samoans to look after their own. Mana’s first operation, a mastectomy, another cancer term, was done in Motootua. She opted to do it. I was beside her the next day as she did not allow anyone besides her Alan to sleep by her side that night, and yes he was on the floor.
Lack of empathy
The patient next to her was a man of about 60 plus years. We heard that he was refusing operation. He had cancer in his stomach. The family said that they had spent a lot of money to come to the hospital, to pay the neighbour’s car to carry him. And they had been coming to the hospital more than three times already. That day, he was told of his cancer. They were to decide on whether to operate or go home. He opted to go home to decide. Mana heard all the whisperings, and she offered her food from her many visitors to them. I gathered all the fruit baskets and orange juices and gave them to his daughter. They looked uncertain as much as we felt unsure. He was in so much pain, that he could not eat anything. But they bought him a bowl of noodles and said that that was what he ate at home.
Mana and I giggled at the nurse who came to his side. We gave him our spare sheets which were blue, to cover his bed but the nurse was grumpy. She said while shooing our sheets away, “We have white sheets.” She stomped off and returned with what was meant to be hospital sheets. When she laid them out on the old man’s bed, she gasped. The sheets had a big hole in the middle and blood stains. When she left, I gave Mana’s spare blue sheets to the old man and his children, which they used. I slowly closed the curtain separating us and the old man’s family to avoid the embarrassing look on the nurse’s face.
Mana said to me, “Mepa, wait, did you know that our blue sheets are not good enough for the hospital?”
“We giggled so much in her corner, about the grumpy nurse, that our eyes burst into tears because we could not laugh too loud.”
“Mepa, what’s wrong with your blue sheets again?” She kept asking me when I fell quiet. If the curtains between us and the patients next to us could speak, they too would be gagging with laughter.”
Mana’s cancer opened her eyes to the reality of illnesses in our country, the suffering, the tired hospital staff, and the things that were lacking to help the patients. Yes there are many good things happening for our people, in terms of health care. Still, there can be more done to improve on it.
The second time she received diagnosis, the doctor on duty gave her the bad news on the counter. What I took from this was the unkindness in such an approach. My sister looked at me with tears behind her eyes and held my hand tightly. I remember being angry at the doctor. I remember wishing he had manners. Wasn’t there a private room or a seat somewhere to let my sister sit on before the news was given to her? Whether or not that is the way of caring for a patient of any kind, I firmly disagreed with it. Mana said to forgive him months later but I still have not forgotten. What I would like to say on behalf of all patients with terminal illness, is for doctors and nurses to be more than doctors and nurses. Doing your job takes us all to a newer level when we are all doing our jobs. We have to Be kinder.
We have to be compassionate. We have to be true Samoans.
The pathway to finding treatment is a first hurdle. Who do we ask? Who has the answers without us running around or leaving the hospital in despair for a lack of answers? My one question which I posed for Mana, was, “Who in here really cares?”
But the lack of empathy drove Mana to reboot her energies, to fight cancer but more so to fight an invincible threat to other less fortunate families. She wrote and spoke profusely about lifting the despair. It was not a strike against anyone in particular. It was a cry out for change of the usual passiveness, the mundane ways, the carefree average thinking that everything will happen in good time. Mana wanted to say that change can happen now if we each do our jobs.
“Do your job!” Her favourite line when she was addressing us at home or people that would some day touch the lives of cancer patients and their families.
She was pointing to everyone, the business community, the ordinary citizen, the parliament, the nurses and doctors, the advocate, the students, and she saw no class or creed other than your and her own humanity. Her anguish included weeping letters for the benefit of all to her prime Minister.
Did you see the facebook post she blessed facebook with? She was charging for positivity, for humility and a belief in better people, better Samoans. It was posted in the last month of her life with us.
Mana would be proud today to see that Palliative care is being talked about by the professionals and the community. She believed in community care so much that she wanted to be on TV to talk about palliative care even when she was very weak. And she insisted that I speak as her primary care taker, because she wanted Samoans to see that looking after our own is ideal, and we can do it with the right knowledge and tools.
Tiana, her friend in TV 1, cried as she interviewed her. Mana’s direct and loving connection with the media gave her hope more than anything. She had intimate discussions with the editor of Samoa Observer who could not be here due to funeral preparations of another cancer stuck friend of Mana’s. But Mataafa Keni Lesa was empowered by Mana’s courage and his own support for her thoughts, gave her more courage. The media has a powerful role in helping cancer patients and for that matter, all ill struck people in our country who need help.
Mana left me with many treasures and some of them includes whisperings about the care for cancer patients. She wanted me to say that Palliative Care is what will help all Samoans and their families suffering from cancer. It will allow Samoans to live a quality life towards the end of their lives surrounded by their loved ones and still be at home, Samoa. She feared dying in another country. She did not want anymore treatments when she could have had one more, because she felt the cost was profound on her families. The government helped as best they could. But she worried about the choices made and the lengthy processes and the queue of cancer sufferers. “ Who lives and who does not?” “ Who gets picked from a small pool of money to survive a damning disease?” The endless uncertainties and silence from the government fund despaired her so much in times of her illness that she wondered of people who did not know the system as well as she had come to learn of it. She told me that from that silence, she feared non responsive emails most of all. It was a bargain for life or death, decided on by humans.
In the end, she made peace with cancer. She lured all she could to fear nothing about it. Her courage, larger than life, continues this journey for us, speaking loud on her behalf.
Towards the end of Mana’s life, she pressed each of us to endure the process of her care. So, in terms of being here, the process of palliation is something a family member has to learn to endure. Sitting by the patient, looking into their eyes, holding their hand, knowing their thoughts if they were quiet by reading their body language.
She wanted to show us that endurance bears a hidden strength for all of us. If we endure with a loved one, as they are suffering, and we face the hardship with her, this kind of endurance will help us. IT will help us be stronger for our children, our families and for those who need to be helped, and those who need to be reminded to help.
The confusion of where to find help during emergency times was like looking for answers as to why that long earthquake happened and what to do from the first moment of despair, of fear, of remorse. We had one doctor to help us, and he is here sitting with me, enduring this talk with me. My contribution to this weakness in the system is that there is no way for you to find out where an oxygen tank can be obtained unless you ask the doctor helping you at the time. Mana’s dream is that one day, our Samoan people won’t have to look far for help in these simple things, as she was teaching us how to cope with it. “ Why not have a palliative care unit?”
That said, I want to express our deepest gratitude to Shelley CEO of Samoa Cancer Society for being there for Mana from the day since she met you. This is the kind of care we all need, someone who will take the extra step to help. Congratulations for the occasion of hosting this with the Ministry of Health.
I shall end my long rag with a written thought by Mana, who was co-writing a book with me about her illness and about my pain in losing a daughter in the tsunami. The following script is when she is writing to the Prime Minister and to Savea sano Malifa, both her idols.
Savea, the P.M., this is the last storyline
The day PM daughter came to bring a card and gift from her parents, I had just arrived in my landscaping boots.
I was landscaping Savea Sano Malifa’s gardens. He came out of his house to help me admire my own handiwork. That day I shared my pinati with Hemingway and Obama, Sano’s most loved pets, his dogs. I was struggling to write my article to acknowledge the role of government in prolonging my life. And it dawned on me, your favourite author Sano, Hemingway, was going to be our opening quote. He said, “ Write one true sentence. Write the truest sentence you know. “And so I wrote the truest sentence I know to the Prime Minister, about what it is like to have cancer in Samoa.
The significance of that day for me, is such that, the two most powerful men in Samoa had entered my day.
You both love your country. You both work with conviction. There is good in everything.
One can move the nation with the flick of his pen. The other one moves the date line. Such is the gift of God to Samoa. We are a determined nation because we are founded on God. You tolerate reliegion and nurture humanity. I know, because you nurtured me. There is good in everything. It is by God’s grace we live.
When I am writing to both of you, politics does not enter my sphere. That is the Bahai in me.Mepa and I have written a book. For any money raised from this book, will fund some treatment, some life prolonging drug for any Samoan. Do the things that are tangible. God will do the rest.
We are a nation of determined people. Empower them. Send them out to become specialists, oncologists. So that our people can be treated, cured or die with dignity in the arms of their loved ones at home. It takes a collective effort to battle cancer in Samoa. E ufitia tatou I le alofa o le Atua. God is ever so gracious.
Before I hand over to the doctor, I want to say, I know as Mana’s sister that she did her job as a cancer patient. I have faith and hope that where-ever you are in the scheme of life, you will also do yours to make a great difference for our Samoa. God bless.
*Lumepa Hald was one of the presenters during a regional Palliative Care Forum held in Apia this week. This is the paper she presented there.