Wednesday, June 14, 2006

Radiation Therapy - First Day

After so many delays, I was so relieved and happy to be starting radiation therapy. I was a bit nervous about it a month or so ago after reading so much about radiation causing secondary cancers, but I’d finally come to the conclusion that I was better off getting radiation – better the devil you know than the one you don’t.

I walked into the treatment waiting area, smiling at the other patients and greeting the staff. Considering what I’d been through so far, I was truly in a great mood and looking forward to radiation. Then it was my turn and I walked into the treatment room. There were three women in there. None of them said “Hello”. One of them said, “Put your bag on that table and remove your top and bra.” That was all. I had walked in there with a spring in my step, ready to meet the team that was going to treat me for the next six weeks and get to know them personally, and instead, I didn’t get so much as a greeting. I literally stopped in my tracks, I was so taken aback. I did as I was told, then plucked up the courage to say, “A ‘hello’ would be nice.” Then I immediately wished I hadn’t said that since I’d have to deal with this woman for the next six weeks, and it certainly wasn’t wise to get on her bad side, especially since my life could be in her hands. But I don’t know that because I don’t know who she is.

Not only did none of them greet me, none of them told me what her role was. The woman who told me to put my bag down and remove my clothes might have been a nurse, the radiation therapist, the radiation technician, a medical student, the cleaning lady, for all I know. She didn’t tell me who she was and neither did the others. There were about five minutes while I was getting undressed and getting onto the treatment table during which time they could have introduced themselves to me and told me what each of them did. Normally, I would have chit-chatted with them and asked them about themselves, but I was so stunned by the reception I got upon entering the room, I was almost speechless. And it takes a lot to make me speechless.

With that single moment upon entering the room, my mood went from optimistic and confident about my treatment to confused and anxious. And it went downhill from there. I lay on the table and the women moved around the room and hovered over me occasionally, checking measurements and equipment, presumably. But again, I have no idea because they didn’t tell me anything about what was going on. I think one of the women said something about making some more markings or something. I wasn’t sure. Since I wasn’t given any specific instructions about what to do or descriptions about what was happening, I just lay as still as I could the entire time, worried that I might throw off the measurements or something if I so much as took a deep breath. Then Dr. Lee walked in, but I didn’t know it for a while because I was lying still and couldn’t raise my head to see him come into the room. He didn’t say anything to me like, “Hello Shin, I’m here to check the markings.” Or whatever he came in to do. I don’t know. He didn’t tell me.

He and the other women (Three or four of them? Not sure.) hovered over me and drew on my chest for a while and then suddenly, they were all gone. They didn’t say, “We’re going out of the room now to start the treatment. You need to lie perfectly still. When you hear the loud humming noise, that will be the radiation being applied to your body. This first one will come from your left side and aim at your chest. It will last about three minutes and then we’ll come back to line you up for the next dose. If you need to talk to us to say you need to sneeze or anything like that, just speak out loud and we’ll be able to hear you from the other room. Do you have any questions before we start?” That’s what I expected them to say to me, but they didn’t. One minute they were all in the room and the next minute they were all gone. I didn’t know if they had started, how long it would take, whether I needed to take shallow breaths or what I should do if I needed to sneeze or what part of the procedure they were doing, or anything. I had no idea what was happening.

When they all came back, I asked them if they’d started and asked them to communicate with me about what was going on. Dr. Lee laughed a bit shyly and said it was a cultural thing. After that, he told me when they were leaving the room again. And the woman who was marking me told me a little bit about what was happening. It could very well be that they told me a thing or two even before I asked for more communication, but I didn’t register it or hear it above the sounds of the equipment and such. If they did tell me anything, it wasn’t clear or enough information for me, because I still didn’t know what was going on.

I think a person in my circumstances needs a bit of leeway in the processing of information. I’ve been to 16 doctors in two countries. I’ve read a dozen books and about a hundred articles on the Internet. I’ve talked to many other cancer patients. My head is full of information that I’m struggling to understand with my limited knowledge and lack of medical training. And it’s not just the intellectual or mental struggle.

I’ve spent the last six months going to doctor meetings and hospitals, as many as 13 times in one week. I had to tell my three-year-old daughter that I’m going shopping instead of telling her I’m going to another doctor appointment after she told someone that “Mommy’s going to the hostipal. She’s going to die.” I’m walking around trying to live as if I’m going to live a normal life span, but knowing that statistically, I have a 16% chance of being alive in five years. I think about what my children would be like without me. Then I read about new research and I think if I can just hang on for another ten years, they’ll have found a cure for my cancer. I think my treatment’s going well, and suddenly, some complications occur and none of my doctors can figure out what’s wrong and what to do about it, so I have to take the initiative and find another doctor. I think my doctors know what they’re doing and are communicating with each other to design the best course of treatment, then find I have to be the team leader and make sure they’re speaking to each other. I’ve had to remind nurses to give me blood tests they forgot or medication they said they’d give me then forgot to give me. I’ve had to remind doctors to order tests that they forgot to order. I feel like my life is in my hands and it’s my job to make sure all the doctors and nurses are doing their jobs because if I fail in that, then I’ll die.

This is too big a responsibility for a mother of two young children who is seeing very little of them because she’s too busy trying to save her own life. I’m not trained or experienced in this. I’ve never had to save my own life before and I don’t really know what I’m doing. I’m doing the best I can by educating myself about my cancer and participating as much as I can in my treatment. I think many Singaporeans hand their lives over to doctors and expect the doctors to do all their thinking and make all their decisions for them. I can’t do that. I’ve already suffered too many setbacks in my treatment due to mistakes doctors have made. And after all, doctors are human. They have their own lives, families, and worries, on top of the responsibility of people putting their lives in their hands on a daily basis. I don’t believe patients should leave everything to doctors. I believe doctors and patients should work as a team. A patient can’t expect her doctor to diagnose a condition if she doesn’t tell the doctor about the symptoms she’s been experiencing. That’s a failure of the patient. But a doctor can’t expect a patient to communicate such things if he doesn’t create an environment where the patient feels comfortable and safe in asking questions and sharing information.

Back to the communication problem as a cultural issue. I’ve lived here for ten years now and I know that people in Singapore don’t communicate as they do in the U.S. Back home, you say hello to the person at the supermarket check-out counter and often exchange a bit of friendly conversation as the cashier is tallying up the groceries. Here, the cashiers don’t even make eye contact, and when I say hello to them, half the time they don’t even answer back. I’ve gotten so used to this distance and lack of social interaction that I’m not as openly friendly as I used to be and have started treating store clerks like nothing more than machines that do a job for me. That’s sad. I’ve grown up in both Asian and Western cultures and I understand that there are cultural differences. But if the treatment of patients I’ve seen so far here is a cultural thing, I think medical personnel should be trained to put aside their Asian culture in favor of basic human courtesy and kindness.

No matter what the culture, I think when you are about to treat a cancer patient who is most likely extremely anxious, terrified of dying, and confused about what’s being done to save her life, you can greet that patient with a smile and a hello at the very least. Some friendly, reassuring words wouldn’t be bad either.

With cancer, I think medical staff need to be especially sensitive. Most of the time, I feel like I’m being treated as a disease and not a person. It’s all routine for them and they just see me as a part of their job, not as a human being. I used to be a teacher, and I bet that if their children were in my class and I saw their kids as merely a job rather than as individuals with unique needs, they wouldn’t like it. Well, there’s certainly more at stake with cancer patients.

I’ve been to doctors who wouldn’t even look me in the eye. They kept their eyes buried in my medical file while talking to me. If they don’t invest in me emotionally, then I suppose they won’t care if I don’t make it. Maybe that’s why many doctors learn to be emotionally detached. That way, they won’t feel anything when the patient dies. Maybe these doctors think that emotional investment in the patient will impair their judgment and ability to reason. But I think there’s a middle ground between being completely detached and emotionally buried. I believe a doctor or nurse can do his job better, and with more fulfillment, if he looks at every patient as an individual person, rather than a disease or case number.

I think my doctor understands this more than most doctors here. I’d heard that he was warm and friendly and that’s why I sought him out. And today, he asked me about my kids and when I told him what ages they were, he wrote it down into my file notes. So now my file tells him not just that I’m Stage IV breast cancer, it tells him I’m a mother with two young children. But he’s unusual for Singapore. He, Dr. Whang, Dr. Hong, and Dr. Hoe are the exceptions here, and I suppose that’s why I went through every oncologist in Singapore before settling on them. But they have a lot of work to do before the rest of the medical community, including their own staff and nurses, catch up to them.

And even these doctors, as exceptional as they are compared to others here, could use some advice from patients about how to treat them – providing information clearly, making patients feel comfortable and encouraging questions, making patients feel they are taking control of their lives and actively participating in their fight for life and not just putting their lives in the hands of strangers, however competent these strangers may be.

I did a research project a while back about medical tourism and the Singapore government’s plans to make Singapore a medical hub for foreigners seeking treatment. Westerners preferred going to Thailand, India, and the Philippines because the people in these countries were more friendly than in Singapore. If Singapore wants to compete, its medical industry needs to do some serious training on communication skills, interpersonal skills, bedside manners and basic common courtesy and etiquette. They need to train nurses here to say hello and introduce themselves to patients upon first meeting. They need to be trained to talk to patients and tell them what’s happening and what to expect. It may be a cultural thing, but I can’t believe that even Singaporeans wouldn’t appreciate a little smile and common courtesy, especially when they’re going through something as emotionally challenging as cancer treatment.

I still have a lot of questions left unanswered, but I felt I was testing my doctor’s patience after he lost his patience with me twice for asking so many questions. So I decided I had to just go with his recommendations since I couldn’t understand everything he was saying. I’m trying my best, but I can’t possibly understand everything my doctor does because if I did, I suppose I could be a doctor myself.

But because of some of my outstanding questions and the lack of communication of the radiation team, as well as the feeling that I’m just a job and not a person to them, I’m losing faith that I’m getting the best treatment possible. If I were their sister or mother on that table today, would they have been as cold and uncommunicative? If they were on that table today, would they have wanted to be treated the way they treated me, or would they have appreciated a bit of courtesy and some explanations as to what was going on?

If they’re seeing me as nothing more than a case number and not a person, then I’m afraid they’re probably not being as careful or conscientious about what they’re doing. Their markings seemed a bit haphazard and lacking in care and attention to minute movements. I think if I were in their position and I was marking up my own mother or sister for treatment, I’d be oh so careful and sooooo very attentive to the patient. I don’t feel like I’m getting that. It may be that what I consider to be haphazard markings really aren’t. Maybe they’re supposed to be like that. But in the absence of any explanations or reassuring words from them, I can only imagine that they don’t really care how accurate they are and they’re actually thinking about what they’re going to eat for lunch or wondering what’s on TV tonight while they’re marking me up. I don’t feel like they’re putting their best into this. I know that asking people to do their best every single time is a big request. But this is not a project or business proposal; this is a person’s life. I’m afraid they don’t think of it this way.

I was so appalled and frustrated with the radiation team’s behavior today, I thought to myself that people who treat cancer patients should have cancer themselves. They should at least imagine the life of a cancer patient. If I were a nurse there, I’d lie down on that table for a while to see what it felt like. I’d lie there and try to imagine what it must feel like to be so scared and worried about dying. I wonder how many of the nurses have even tried that. Or the doctors, for that matter.

I’ve run out of options and time so I can’t change my radiation team now, but I need to find a way to make peace with my uneasiness and fear that I’m getting less than the best treatment. I need to find a way to feel comfortable with the treatment I’m getting now because I can’t go for the next six weeks feeling this way. If I do and the cancer comes back or I have a secondary cancer, I know I will blame it on the radiation. I’ve read a study that shows a high incidence of secondary cancers in patients who received either the wrong dosage of radiation or inaccurate placement of radiation. And today at my chemo doctor’s office, I met a woman who had breast cancer 8 years ago and had radiation. Now she has cancer in her chest wall and her doctor thinks it was caused by a too-high dose of radiation. So I’m afraid that any tiny error in the dosage or aiming of the radiation will lead to recurrence or secondary cancer. That’s why it’s so important to me that I have confidence in my radiation team – that they’re doing their very best to be accurate and spare my healthy tissue and organs, that they’re seeing me as a person whose life they might prolong or shorten.

I keep reading and hearing about how a cancer patient’s faith and confidence in his doctors and treatment team is related to how long he survives. I’ve even read about some extraordinary cases where patients are cured by their faith alone – they were given placebos but they believed they would be cured so they were cured. I feel if I don’t have faith in my radiation team, the radiation will kill me in the long run. I had complete faith in my chemotherapy and in my surgery. I went into both with confidence that my doctors and I had made the right choices about treatment and that we were working together to fight the cancer. I don’t have that feeling now with radiation. I need to do something about this as soon as possible or the radiation will do me no good and I’ll end up dying from worry and negative energy.

But how do I do this? Do I talk to the doctor and the radiation team? Would that just anger them and turn them against me? Would they understand my concerns and learn from my feedback? I don’t think they’re bad people or even bad professionals. I just think they treat patients the way patients expect to be treated. And since people here are passive, don’t speak up, or take an active role in their treatment, the staff just go along with that and everyone just does their bit. But if the radiation team took my advice to be more human, kind, and communicative, it would benefit everyone – even the passive patients who don’t think or question, as well as the staff themselves. I’m sure this could be a more fulfilling job if they made personal connections with the people they see every day for five weeks in a row, instead of just going through the motions of a monotonous routine. And don’t they WANT to feel like they’re saving lives? Or do they think their job doesn’t matter in the patient’s outcome? Do they realize how much a kind, reassuring word can do for a patient’s outlook or how much power they have over a patient’s faith and confidence? They should know they’re not just mechanics in the process. They should know what a difference they can make in the lives of the patients. Someone should tell them.


Anonymous said...

i will tell them.

Shin said...


Who are you? THANK YOU! Thank you, thank you from the bottom of my heart, lungs, and every other vital organ!