First written on December 3rd, 2020.
Dear friends, I don’t have that many friends, you know who you are, if you’re reading this, thanks for being my friend. You might’ve noticed I’m kind of off-grid for a while, I want to let you know that I’d been busy taking care of my dad. He had a stage IV lung cancer.
He was first diagnosed in early September 2019 in MRCCC Siloam Hospital, a month after my 30th birthday. He fell sick and hospitalised in Siloam Asri Hospital. The doctor there suggested that we do bronchoscopy but we were in so much denial cos we weren’t ready for something bigger than “asthma”. So after a discussion with my family, we took him to Siloam MRCCC Hospital for a specialist, they did biopsy through bronchoscopy and TTB core biopsy to the mass, and from the Pathology Anatomy result we know that my dad is diagnosed with stage IV lung cancer, Non Small Cell Lung Cancer (Karsinoma Sel Skuamosa).
I was in Penang on a holiday with my friends when I heard that news. The whole family was in shocked cos my dad had no significant symptoms. We began to look for second opinion, and some people suggested cancer treatment in Penang Malaysia since they have better and faster service, also better medical equipment. We even tried using BPJS (govt medical aid) for his chemo in Jakarta, but first experience, we waited for more than 6 hours for a consultation, went home at 2 am in the morning, we knew we want to give him a better treatment while we can, and we were blessed cos Dad had a health insurance that can cover all expenses for his cancer treatment (also the treatments in Malaysia).
In 3 weeks, he started his medication i.e chemotherapy in Penang, Malaysia. We went for 4x to Penang for chemotherapy. Spent the weekend there every 3 weeks. After chemotherapy my dad spent at least 3-6 days in the hospital in Jakarta for post-chemo treatment, this was where things got ugly. His electrolytes and blood counts dropped off, his stomach hurts, he had nausea and vomiting until his electrolyte drops. Hence, IV injection with drugs like Ondansetron, Omeprazole, antibiotics, blood transfusion, leukogen injection, etc, until he’s better and discharged, and ready for his next chemo.
During that 6 months, I’d been in the journey with him, took him to the hospital for consultation, travel to Penang, kept a record of his medication, stayed with him in the hospital, day in day out. I know now almost every corner of MRCCC Siloam Semanggi Hospital, except for certain floor that I haven’t been into. Each time was a new experience. One time my dad’s electrolytes was so low that he has delirium. He sort of losing his consciousness, don’t know where he is, he peed on the floor, he spoke to me in Chinese, he couldn’t communicate with the nurses and refused to stay on the bed. The doctor suggested we put him in the ICU. He needs an intensive care. They boosted his electrolyte with 3% NaCL. My family came to visit, mom and my sisters cried. It was traumatised for me to witness my dad losing his consciousness. The next day when we visit, he was okay, he said he didn’t remember what happened last night. He asked me if he’s went into the ICU because his asthma went severe. I just said yes. But that seems to bother him, the fact that he couldn’t remember it.
After that, we decided to continue his treatment (the 5th chemo) here in Jakarta (because he was weak and travel takes a lot of his energy), at MRCCC Siloam Hospital under the care of Dr. Sita Laksmi. She’s one of the best Pulmonologist + Oncologist in Indonesia. She’s been caring for him for all his post-chemo treatment in Jakarta.
The 5th post-chemo was again bad, he was hospitalised for 10 days, to this point we had hired someone to take care of him (stay the night) at the hospital, and continue at home. I took turn with the caregiver in caring for him during the day til night. The doctor suggested we take a break in his chemo and improve his vitality first. She suggested immunotherapy for the next treatment.
Sometimes I can take things easily but sometimes I just wish life gets better and easier. I sacrificed part of my life, but that’s okay. I only wanted to take care of him while he’s here.
Ps. caring for sick parent is not easy, so if you can, do it in your own term, plan it with your family, hire a nurse based on your need, some needs a caregiver, while some case needs a professional nurse. Second, take turn with your other family members, make a schedule for roster in taking care of the patient, share the love. Don’t take responsibility all by yourself. Talk it out with your family, ask for help. It wasn’t always easy but you are all in it together.
In January, he had his first immunotherapy. He started to feel the pain in his upper back shoulder. Maybe because he stopped chemo, and the cancer is reacting. He took palliative care of opioid drugs. We tried which one suits the best to ease his pain. But everything seemed to not working. He was still in so much pain. Writing this makes me cry. My dad wasn’t ready to come home, so he was in the hospital for more than a month. In March 2020, COVID 19 pandemic started to hit Jakarta. The procedure to visit in-patient was more strict so we had a nurse 24 hours with him, until his condition went bad, he had trouble breathing (more than before), he got admitted in ICU, put in a ventilator machine for about a week, until he lost his heartbeat, with all of us beside him.
Suggestion:
- Early detection is always better. If you have genetic factor, or in the risk factor for cancer, it’s important to get yourself checked regularly. It will be much better to detect it while it’s in early stage as there will be better options for treatment, including surgery, radiotherapy, etc or, better yet, nutritions and maybe herbal/holistic approach to try.
- Learn and inform yourself about the conditions. It’s important you read from trusted source, and the newest update around the treatment. Don’t read articles or studies from 10 years ago since it’s not valid anymore (and can make you paranoid). You want to know only the latest treatment for cancer. It’s also good to prepare yourself of what might comes.
- Whether you, the family, or patient choose herbal or medical treatment, it’s important to come to agreement especially if the patient knows what he/she wants for him/herself.
- When doctor suggested biopsy, do all the test available for histology like EFGR, ALK1, or whatever it is to know about the characteristic of the cancer cells and the right possible treatment to explore. The more you know about it, the better is the choices for suitable treatment.
- Learn that not every cancer is the same, it’s even valid to say it’s different for each patient. Symptoms, reaction to treatment, side effect of treatment, performance of treatment, stages, metastases, psychological factor, there are many factors, again, it’s life, you never know.
- With cancer, it’s going to be a rollercoaster ride, up and down. Celebrate the ups, stay strong on the downs.
- Spend times with your loved ones, patients want to get support and time from the people they love.
IN LOVING MEMORY – GOUW HUAP TJHE (Our beloved father, husband, grandpa). 01.06.1957 – 08.04.2020
