Mrs Hsu*, age 47 has been a caregiver for 12 years to her husband Mr. Hsu, diagnosed with rare neuroendocrine cancer. Read how they both took control of his cancer journey and became a firm believer that with good knowledge and support, we can help a patient survive more than 4-6 months.
I am caregiver to my husband Henry*. Some 12 years ago, he was diagnosed with a rare cancer, a pancreatic gastrinoma neuroendocrine tumour (NET). He was 50 at that time.
His symptoms started with severe vomiting and diarrhoea, which occurred every few months. There were no other complaints. When we met the doctor, he told us it is a gastric issue and not to worry. He gave us some medicines. Henry used to keep very busy as an engineer. He always lived in the belief that he was absolutely healthy, so did not pay much attention to his gastric problem. We just continued with the medicines prescribed by the doctor.
But, despite medication, his gastric problem continued for almost 5 years, and it kept getting worse. We thought we should get an abdominal scan done, but the doctor said there was no need for it. ‘It is just gastric; take the medicines and rest at home,’ he said.
One day, when my husband's insurance had matured, we were required to take a blood test to renew the policy. When the result came, the doctor was shocked. He asked Henry: ‘Have you had any blood loss recently? Because your red blood cell (RBC) count is alarmingly low. This is very serious. You need to be admitted to the hospital immediately.’
The doctor drew me aside and said that Henry’ condition was extremely critical. ‘He has only three to six months to live.’
Biopsy
We got an abdominal scan and biopsy done immediately. This was in 2011, around Christmas. The results showed malignancy. But the doctors were not sure about the type of cancer. They suspected it was some kind of rare neuroendocrine cancer. It had reached stage IV.
Tough times
This news was a big blow for me. Both my children were still young – they were in primary school. I saw my world crumbling before me. I just couldn’t imagine my life without Henry. We never thought of cancer. We had no knowledge. We missed detecting it early and working ahead of time.
I think that phase was the toughest in my life. It was very difficult. I used cry most of the times. But somehow I continued to work because we needed the money. My husband was not able to work after December 2011. He was very weak. I told myself that I need to be strong that time. I was doing two jobs then. In the morning I was working with at the airport. After that I would return home, rest for 10 minutes, then rush out for my second job as a tuition teacher. I had classes all day and would get back home only at night. I would be crying in the car most of the times. Just before entering my student’s house, I would wipe my face clean and behave as if all was normal.
I also had my own illness to manage. Since young I have been troubled by severe headaches. So it was not easy. I always faint. But after my husband was diagnosed, I stopped getting headaches. But felt very tired.
But amidst this trauma and crisis, I kept my hope alive. I just didn’t believe my husband will leave me so soon. I said No. I had to take control of his cancer journey.
Treatment
We started going to the National Cancer Centre (NCC), Singapore once a month to take an injection (Octeotride) to control the cancer cell growth. One day while at the hospital, I was sobbing while waiting for Henry to finish. A nurse came up to me and asked me what was wrong. When I told her about Henry, she said: ‘I know a patient who used to take some injections which benefitted him. He lived for many years even though the doctors had given up. So don’t lose hope.’
I asked the nurse if I could have the person's contact number so that I could get details about his treatment, diet and other details that could probably help Henry.
PRRT – radiation therapy
From him, we got to know about a treatment called PRRT - the Peptide receptor radionuclide therapy. Luckily Henry is very knowledgeable so he had heard about PRRT. We came home and did our own research. We studied about PRRT exhaustively. We learnt that PRRT is a molecular targeted therapy used to treat neuroendocrine tumours. It delivers high doses of radiation to tumours in the body to destroy or slow their growth and reduce disease side effects. After speaking to doctors, relatives, and friends and armed with our own knowledge, we decided to go to Germany (Zentralklinik Bad Berka )for PRRT. This was in 2012.
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We had to travel to Germany every 6 months for the PRRT. Sometimes the frequency would increase depending on his condition, his gastric inflammation, vomiting, etc.
I think we made the correct decision. Thanks to PRRT treatment, Henry is alive today. I think sometimes it is not just money you need; you have to have the knowledge. Over the years, Henry has become better informed and conversant with neuroendocrine cancer than many doctors. When people live with a condition for so long they actually get to know more their illness.
Support
My mom helped me a lot. She gave me a lot of courage. I did not tell anyone about our problems. I just asked people to pray for us. I have a lot of friends from China. They would come to visit me frequently. They would get some food which Henry liked and which are considered good for health. I always believe that God sent them to help me. They just got what we needed. I could also turn to my relatives whenever in need.
Children
My children would get depressed often. Because of Henry’ illness, we were not able to go out or holiday with them as a family. I would speak to them and tried to spend as much time with them as possible. You have to make them stronger and help them face the situation at home.
Treatment in Australia
We have recently shifted Henry's treatment from Germany to Australia. There were many reasons for it. Henry has become considerably weak. He finds the flight distance between Singapore to Australia shorter and less tiring. He prefers the weather and food in Australia. Henry's daughter also lives there. She is able to fly to Perth whenever required. I am getting older and Henry is getting weaker and weaker. You know, if you have some support overseas, it makes it comfortable. Most importantly, we find the hospitals in Australia amenable to patients. Even communication with hospital authorities has become convenient. When we send a mail, even during the weekend, to Australia we get a reply back immediately. Overall our experience has been very satisfactory.
Present situation
Henry has changed a lot over the years. He has lost tremendous energy. He cannot do many things. He does not like to meditate, and is not able to exercise. Even gentler forms of Tai Chi or Qi Gong does not suit him. He has also been recommended Traditional Chinese Medicine (TCM), be he does not believe in it. Being an engineer, he has a more scientific bent of mind.
My Message to Patients and their Families
Some people are scared to face ill health. They don’t want to do anything. As a result, they die early without a fight. You need to use your mind. You need to think and make your own decisions. Of course you need to have family support. If you are surrounded by people who love you, you can survive longer and better. Love is very important; air and food comes second.
When ill, thrive on hope. Seek inspiration from individual personal journeys of survivorship. People should know there is Hope. With good knowledge and support, we can survive much more than 4-6 months. We can even have a quality life.
A key message to the caregivers is that self care for the caregiver is equally important. I am always rushed. I do try to go jogging in the morning once or twice a week.
Caregivers should ask for help. Ask friends/ family to cook something once in a while – it could be something that the patient would like or even the caregiver. You can ask them to run an errand for you.
