It’s been some time since I wrote about Dad’s situation and indeed, there’s been a lot to write about, which makes it even harder to get myself down to writing without organizing my thoughts. But I decided to let my brain do the sorting as I write. Pardon me if they sound disjunct.
I’m not sure if I’ve mentioned it before, but Dad was “lucky” in the sense that, his stage 4b cancer was in the nose and nose cancer has one of the highest survival rates among cancers. So I hope this information can help others whose family or themselves may be experiencing the same situation.
You know how people say don’t go for medical checkup before taking up insurance? Since Dad’s misstep in cancelling his insurance and then getting diagnosed with cancer, I’ve also learned that you should go for medical checkup before cancelling your insurance. That would take a lot of financial stress out of your family if anything is actually happening with your body without you realizing already. But again, thanks to Medisave and Medishield, Dad’s treatment was pretty much adequately covered.
During the week I was back in Singapore to take Dad for checkups and make preparations for treatment, D had been a wonderful support. It’s not even her Dad and on days when she’s really tired, she could’ve just slept in at home. But no matter how early I had to take Dad to the hospital, and even if she was visibly tired, she always came with me to lend me her support and her presence was really huge to me. Her knowledge and experience on financial assistance also really saved us a lot.
Before going further, I’d also like to thank R, a long-time friend whom I mentioned in an earlier post and is also recovering from nose cancer because when he learned that Dad had nose cancer, he very generously shared his experience, knowledge and links to quality information on it and was always ready to answer my questions.
The Cold Scientist
Dad was assigned to an authority in the field of cancer who has done tons of research and is very respectable in his field. And that was what he was, i.e. a researcher; a scientist; not so much a doctor. When he spoke with Dad about his situation, there was no tact in his words. He explained the side effects Dad would have to go through during radioactive and chemotherapy treatment and how bad it would get and that was it.
An extract of his words: “Your saliva will get sticky, your throat would start to get dry, food will become tasteless, you will get sores and ulcers in your mouth such that it can get very painful to eat or drink, and your neck area will turn black, skin will start to peel off, you will lose hair at the back of your head, and if you are unable to eat, we will have to put a tube into you and make you pump 6 packets of nutritional packet everyday to make sure you maintain your health.” He continued, “Out of 100 people who go through the treatment, all 100 people will experience this. Do you have any questions?”
I could tell Dad was very afraid at this moment. He asked, “Everyone will get all the side effects?” And the doctor replied very coldly, “Yes.”
I didn’t realize then that Dad had already decided he didn’t want to go through the treatment because of what the doctor said.
Dad asked, “I’ve been taking Chinese medicine and I feel like I’m getting better, can I try that first?”
The doctor replied, “I can wait, but the cancer cannot wait. You’re already stage 4b, if you wait some more, the side effects may not just be what I just told you and I may not even be able to help you at all. And no, you cannot continue to take Chinese medicine during treatment because we don’t know what it contains and whether it will interfere with the chemo medicine.”
The Humane Doctor
While we were seated at the waiting area on our next trip to the hospital for another round of checkups and preparation for the treatment, Dad suddenly turned to me and said, “Let’s not do the treatment.” I got a shock and my heart sank. “Why not?” And he said what the doctor told us previously made him feel that the treatment is not worth it as it will just ruin his life.
I was determined to make sure Dad goes through the treatment and we wanted to speak with the doctor again. Luck would have it, the doctor wasn’t around and the lab assistant called a younger assistant doctor to speak with us.
We raised Dad’s concerns to him and he explained from the beginning again. He took out a piece of paper, drew the timeline and told us what to expect after each week of radiotherapy and how the hospital will help Dad cope with it. This piece of information below will be good reference for people to have an idea on what patients with nose cancer going through treatment can expect (but do remember your situation may differ so consult your doctors).
At the end of week one, your saliva will start to get sticky. At the end of week two, your throat would start to get dry and food will have blander taste than usual. At the end of week three, you will get sores and ulcers in your mouth such that it may become painful to eat or drink. Some people are able to bear with the pain and make themselves eat because it is very important for you to maintain your weight and health. You cannot afford to fall sick and halt treatment because the cancer can come back stronger during the break. That is also why you are asked to drink at least two packets of nutrition pack a day on top of your regular meals prior to treatment so that you can gain weight and when treatment begins, you will lose weight back to your original weight. If it gets too painful to swallow, the hospital will give you morphine to take. Apparently, according to our doctor, he said Dad can take as much as he needs to ease the pain. If the oral morphine doesn’t work, they will give a morphine patch whose effects can last longer. The morphine can cause constipation, so if it gets bad, the hospital will give you laxative to make sure you pass out the waste in your body. If the situation is so bad that you really cannot eat or drink even with the morphine, they will have to put a tube into your nose to your stomach and make you pour six packets of nutrition packs in everyday so that you will get all the nutrition you need. Your skin will turn black from your chin down to your neck and skin will start to peel but the hospital will provide cream to apply to protect your skin.
At this point, I could almost see a light bulb appear over Dad’s head as though he got an epiphany (or like Oprah would say, an “ah-ha moment”). He said, “Oh, the tube is put through my nose? I had thought you’d have to open a hole in my throat and put it in.” Suddenly, I literally saw his shoulders relax and the kind doctor continued, “Yes, and we will have a review session each week to check how you are doing and help you accordingly. For every side effect, we have something to help you cope with it. We’re not just going to let you suffer. Take a look at other patients sitting outside later as you go out, they are all dealing with it well. So far, I’ve had only one patient though who could eat steak during his treatment.” And I chipped in, “Maybe you can be the second!”
The occasional smiles by the doctor and small appropriate jokes really made the atmosphere less tense and Dad asked, knowing he probably would get a no, “Is it a must for me to get treatment? I still want to give Chinese medicine a try.”
The doctor drew on the paper again, the picture of the skull and a tumor saying, “Your tumor has already spread to your lymph nodes and it now seated right below the back of your skull. Now, this is the only part we have to do radiotherapy. If you wait further and it spreads to your eyes, we will have to radiate a wider radius and it can potentially damage your eyes permanently. If it gets to your brain, we may not be able to help you anymore but only provide palliative care.”
I turned to look at Dad and he said, “Ok, I’ll do it.”
The Chinese Medicine
The Chinese doctor Dad had been seeing was overseas then and wasn’t around to advice Dad any further. Before, he told Dad to trust him, but at the same time, he was responsible enough to tell Dad, “I will not tell you to not go for Western medication treatment because it is your life. I will tell you what I can do for you, and you go hear out what the Western doctor has to tell you, and make your own decision.”
I went online to search a lot about it and most of the results are not positive. And to be honest, I was a bit relieved because I didn’t want Dad to take the risk with Chinese medicine that is undocumented. But many sites also suggested that it is possible for patients to take Chinese medicine after the treatment is over so as to build up their immunity.
Throughout the period of waiting till his actual treatment, Dad was actually still wavering. Occasionally, when I was just sitting at home, he would come to me and say, “I still think I want to give the Chinese medicine a try. Let’s postpone the treatment and go for it only when the Chinese medicine doesn’t work.” But like the younger doctor said, he was already on stage 4b and cannot afford to “try.”
Part of his worry was that we still had a housing loan to pay for and he felt that he couldn’t afford to stop working so to make sure he goes for treatment, I had to assure him that I will take care of the house loan and utilities. Thankfully, after a few days of coaxing, he set his mind to go for it.
The Treatment and Logistics
Before Dad started treatment, I heard from one guy whose father just finished treatment for nose cancer that since the patient will be going through radiotherapy every weekday for 7 continuous weeks, the body waste will be quite toxic so it is recommended to have the patient use a separate toilet for himself and clean the toilet daily with Dettol (doesn’t have to be Dettol) to get rid of whatever bacteria and toxins there may be. So there was a lot of logistics to get done and although we couldn’t find it while I was still in Singapore, Mom said she will take care of it (because you can always count on the mother). Dad also had to get his teeth checked and, if necessary, extracted to make sure his oral cavity is in good shape to prevent infections that can affect his health during treatment.
Because Dad’s cancer was diagnosed in Tan Tock Seng Hospital (TTSH), scans done at Farrer Park Hospital, and eventual treatment at Singapore General Hospital, we also had to go around to collect all the scans and make the different payments since none of them are under the same group. So, if possible, try to stick with one hospital (or at least those under the same group). That was also when I learned the difference in quality and speed of service between public and private hospitals because calling TTSH regarding the report, we had to tell them Dad’s info including name and IC number and when we arrived, had to wait to make payment and then wait another 20-30 minutes for the data. But with Farrer Park, all I had to tell them was Dad’s name and when we arrived, the nurse immediately stood up with Dad’s scans ready in a nice folder placed in a paper bag all without me having to say anything.
There’re a lot of horror stories online about how badly the mouth can rot and also about the weaker immune system so, I was most worried about Dad when the treatment goes past the 3rd week not knowing if he could take the pain. Further, as I wouldn’t be around, I wanted to make sure he’s got the nutrition packs when he needs them, so I bought some 13 cartons of it to last him up to 6 months. I think the 13 cartons cost about $1,000 but D was very resourceful and found an online shop selling the nutrition packs much cheaper than other places, and because we bought over 350 packs, we managed to save some $200.
When I checked with Dad a couple of weeks into treatment, I learned that he had no problem eating, and I continued to check in on his condition now and then. Dad was really fortunate as he was able to eat without problems through the entire 7-week radiotherapy despite some pain. He said his friend gave him antelope horn to make into a drink to keep him healthy. Since antelope horn is supposed to reduce “heatiness,” I guess that might have improved the situation. But again, there is no medical proof of this, so it could’ve just been a coincidence. What’s most important was he was in good shape.
Midway through the treatment though, Dad suffered from serious constipation and had to be hospitalized. Thankfully, it didn’t cause any huge problems to the treatment and I had thought that was partly beneficial in the sense that he didn’t have to travel to-and-fro for his chemo that week since chemo is the one that takes the toll on your energy and immune system.
Chemo can really damage your immune system so it is important to protect the patient as even a cough or sneeze from someone could cause them to fall ill and suspend treatment. So, Sis bought Dad face masks to make sure no one will transmit their bacteria to Dad and also paid for Dad’s taxi trips to the hospital so he didn’t have to expose himself to the train and bus loads of germs.
Days after Radiotherapy
A few weeks ago, Dad finally completed his 7 weeks of radiotherapy and 3 sessions of chemotherapy. He sent me a picture of his radiotherapy mask and of his burnt out neck with peeling skin. He was supposed to rest for a month and then go for chemo once a week for the next month and then rest for another month before going for the last 4 weeks of chemo in December once a week*, but through my mom and dad, the doctor said he’s recovering very well and there may be no need for further chemotherapy (?). I was elated but confused by this statement as I had the idea that treatment has to be completed regardless. If it is true that his treatment has finished, I’m very happy for him. I’m still a bit doubtful about that but I definitely hope that is true. It’ll still be a couple of weeks before his next review with the doctor, so we’ll wait and see what happens.
A few days ago, I was checking in on him and he texted me his picture and I was so glad his skin is almost back to before, looking nice and beautiful despite him having lost quite a bit of weight. According to him, he’s lost about 7-8 kg, but hopefully he will drink more of the nutrition pack I got him so that he can gain back the weight.
* Note: There are different schedules of treatment depending on the hospital and depending on countries so I shall not attempt to detail them here
The King of Karaoke
While Dad still has to go for review to make sure he’s recovering fine, when I think about it, it feels like this might have been a positive thing for him. Dad is already past retirement age but he’s still working and if this hadn’t happened, who knows he may just be working forever? This was a good chance to let him slow down and enjoy his life. Like I’ve said before, Dad is a fishmonger, he wakes up at 2 am every day and has to move around containers weighing over 100 kg each. I’m not exaggerating because I’ve been to help him at the market before and he makes purchases at the fish market in units of 100 kg. So now, it’s time he gets to sleep in and wake up to the sun.
Checking with my mom, I learned that Dad is back to enjoying his favorite karaoke now and I’m really happy for him. I still recall the time when I was 10 and he said he “bought me” a karaoke system because I did well at school. So sly. Lol… But that’s a story for another day. Or maybe a story that I will just keep and reminisce privately.