Hi everyone, today we have Ms Theresa and Mr Sunny who have been married for 33 years, Ms Theresa was diagnosed with ovarian and uterine cancer in 2009 and Mr Sunny was diagnosed with bone cancer in 2016 and they are here today to share their experie nce with us.
Hi, hello.
Thank you for joining this webinar with me.
Thank you for having us.
So maybe we can start off by Ms Theresa, sharing us your story.
Yeah, sure. Hi everybody, my name is Teresa Liew. I'm 55 this year, oops a bit old. I've been diagnosed with ovarian cancer since 2009, I lead a very active lifestyle, very, very active person. seldom sit down and not a couch potato so I suddenly have pains and all these things, one after another, especially abdominal pain. I always thought it's just a normal ladies monthly period pain, didn't give it much thought. And because it's the pain is more acute, towards the end of 2008, so I always think that because my workload. my my work pressure is very high. And usually, year end is crazy. So I will say this is just pressure work from pressure. nothing. Just rest a bit, relax a bit. nothing but every time the period come, it gets more and more intense as every month goes back until December, when I was having a period for the month of December 2008. The pain was bad, that I had to lie down totally. And I remember I ate a total of 8 Panadol. No difference, something different now.. Why yeah? Still never thought of anything bad. Just push it aside. Until December 2008, yes the pain was very very bad, then January 209 It was so bad, I was in the middle of a meeting that I suddenly turned pale. People in the meeting was also, eh, what is wrong with you? Your face so pale? Because I felt the period was so heavy that I know a lot came out and the sudden loss of blood was a lot. After that meeting, I straight went to see my gynaecologist, and then my gynaecologist checked and said, oh, I cannot do anything. Wait my gynaecologist have to wait for me to finish my period, then only I can go back and do a very good, clear scan. So that's how it started. Once scanned then we found a very big cyst, and immediately the doctor orders a biopsy because it's as big as a fist, there's no waiting, after the biopsy was done, I think very fast. He gave me only one week, But a bargain for two weeks because it was Chinese New Year. Please after Chinese New Year. So the 3rd day of Chinese New Year I was already in the hospital, and I did keyhole surgery to remove the cyst. But the minute the cyst was removed. The doctor says something is not right, sent the cyst for analysis. And to get a confirmation and within 24 hours, came back to say that it was malignant, it was cancer. then three days later, whatever, full hysterectomy surgery was performed immediately. So there's not much time for me to relax or think about it, or whatever. So that's how it is. But then, while after the chemo surgery before the surgery. I had a PET scan done as well And that's when the doctor found out that I had uterus cancer as well. So that means I had two cancer simultaneously. So, this kind of things. Nobody knows. And mind you, I always have my yearly scan, and I don't miss out on my appointments, I always have my annual pap smear done, and nothing was odd about it, everything was okay, but the symptom is very abnormal heavy period, very painful. I can't stand, I can't walk. I need to lie down flat. So that's that's how the early symptom was. After that, everything was okay. I did not stop working after 60 days of normal MC. I'm back to work. But of course, half day lah. It was a very trying period, I still continue to work but after two years. My body gave me signal to say that I cannot do it anymore. The body is giving way, meaning that I'm having symptoms such as dizziness, my hands started shaking. I'm heading for a breakdown, that means, when the stress is too much already on the body, and is the way to say that, enough. So I went back to my gynaecologist and as well oncology unit and they check and and they asked me what is wrong, I got scolded by my doctor!
Post-operation, one day, three days, one week, monthly, all that I passed with flying colours but after the two years, my results started going down. Everything starting going off. So, then the doctor did a full scan, full checkup, full everything and come back and tell me. Okay, the results you want the good news and bad news? The good news is, he knows what is wrong. Bad news is I have to stop work immediately, or my doctor will cease to be my doctor, he will ask me to look for another doctor. So it's a shock to me. So in the car. After the hospital visit, it was very quite, my husband Mr Sunny said, don't say a word. When I go back I'm going to draft a resignation on your behalf. I just need you to sign on it. Next day, go back to office and hand it in. That's all. No talk, no negotiations. Resign. Okay. My job actually, I need to give minimum three months notice but the minute I handed in my resignation letter. I hand in on a Monday. I walked out on the Friday, that shows how many days of leave, paid leaves. I have accumulated. So, I have to walk up, because I'm choosing life I'm choosing my life to get my life back. Not the work. So this is how it is. What I'm trying to say is, don't die for your job. It's easy. From there onwards, I don't really follow a strict diet or change to a vegetarian diet. No, my doctor also told me, Don't do it because your body is so used to whatever you're eating, we might have changed, or suddenly changed my diet totally. Your body has to cope up with that again, the sudden change weight. So whatever you do, just do it moderate. I enjoy durian, okay, I enjoy asam laksa also. I enjoy my curry and everything. I'm a Malaysian I'm love food. I'm a foodie. Don't overdo. Don't overdo it at all. And of course the doctors, whatever the doctors advise, follow. I'm not on strict medication. Neither am I on any hormone replacement therapy. It's a definite no-no for me because the minute I do anything HRT, my cancer, because it's an ovarian cancer, it will come back. So also I was cautioned, I cannot take anything that will affect my hormone. So at one time, whatever I said was because it was so new to me, and there was no support group, whatever, and during my time, I felt so lost, I do not know who to ask for advice, sharing, so, I have to rely on the doctor, and let go of stress, let go of stress. I mean, in my case, while I was in the hospital they sent him a psychologist, and found out the cause of my cancer, or a very large contributuion is because of stress for my case ,70 over per cent. So I learned a lesson there don't put yourself under undue stress, It will cause the body to go haywire, and if you don't look after yourself, like how I did, then that's not good. That's my advice to a lot of people out there and a lot of people don't think about it. I'm really an Energizer Bunny. So how can it happen to me. No, not possiible. I'm not a choosy eater. I drink a lot, I hydrate myself pretty well. Exercise, so much walking around, and 10,000 steps are no issue, a day. That kind of thing, okay, how can it happen to me? I thought it only happen to people who are sickly, who are not active, but no, it happens to everybody. It can happen to anyone, So I was not given any treatment, but I was under strict supervision by a doctor. I was not on chemo, because of my age unless my condition, post operation deteriorates, so that is it because mine was H1A and H1B. My ovarian cancer, stage H1B, my uterus cancer stage is H1A.
So because number one is early stage number two because of the active lifestyle I lead. So the doctors do not want to put me on chemo or HRT or anything like that, but he monitors my activities, and all my vital signs and everything are very very rigidly and until he's okay with me, then I'm relaxed a bit. So, initially, I must be very good girl. Whatever doctor say, must follow. I increased back my sleep a lot, or there wasn't any supporting group at all I did not know who to turn to, I felt very lost so because of that, of what I've been through. Now I would like to help or even just sharing with other patients, because sometimes people just, huh cancer, die lah? It's a death sentence like, I also thought the worst and then come to terms with it, then accept it. So now, I would really love to assist or help who just want to hear from another patient's point of view or cancer survivor's point of view, because it's very difficult to share, if the other party is not a cancer survivor, there will be a lot of common ground, and people will start asking questions: what do you eat? What do you do? Everything, a lot of things, which normally, we don't think, but later when we learn. Then we start sharing. Sharing is caring. That's how I see it.
Wow. It takes a lot of strength.
Luckily I have my husband, he was. He was really pillar of strength, He helped me a lot.
Yes, there's one problem I want to add before the doctor told her. The doctor told me first and thought I can take the news even better, which is not true. About her having cancer, the doctor put me aside to tell me first. The wife probably like that, like that before the actual diagnosis called biopsy. So I had a few days of stress. Maybe that's why I had the cancer later.
Maybe Mr Sunny, ou can share your story now.
All right. In the year, 2016, and the month of April, I was doing some things in the back of my house you know and and lifted something heavy, and turn around, I had a back pain, so I thought I twisted it, I had this problem, but that back pain became worse and worse and it didn't improve, so it came to a day in November from April, you know I was suffering and all that, until one day in November 2016 I could hardly walk in, I couldn't even stand, so I thought if this is a slipped disk, I need a confirmation, so I got Ms Theresa to bring me to private hospital to get an X-ray done. And when they came out with the result, they told me, Mr Lim, you have three fractures in your spine, I started shouting I was so mad with them. I said you must be crazy, if you have one fracture in your spine, you wouldn't even be able to move. Don't tell me I got three practice in my spine. Okay. So that poor lady just issued me a letter to say, I give you a letter of referral, you can go see a bone specialist, and I spoke to a bone doctor, and after the, he examined everything and looked at the X-ray and told me, Mr Lim listening to your story, I believe you. You know I tend to be on your side, whereby you have this fracture you won't be moving around at all, but looking at your X ray, they are right. You have three fractures in your spine. So they're very surprised. You know how do you think this can happens, So, they make me go through all the tests: X-ray, PET scan, CT scan, MRI, I went through everything. And finally, in the ward hospital, on the hospital bed, my doctor came with another specialist and he said, we have found that your bone has been eaten up. It's all porous like a sponge, and because of this, it's so fragile that one of your column your spinal columns collapsed. Crushed totally and you have another two lesions, it's a fracture, and he said, why this thing happened is because you have cancer in your blood, called multiple myeloma, and this cancer attack your bone. So what we can do is we can try to address the cancer but we can't do anything about your bone. It's already like this, you have to live with it, you cannot fall down, you fall down, you're likely to break a few bone. Fracture. Treat it with chemotherapy. I, as a layman only read about chemotherapy on my phone. You see all those videos and all those things and I told my doctor. Look Doc, I'm a layman, I don't know much about these things, but one thing I read about chemotherapy, it only benefits the pharmaceutical companies. Yeah, all these drugs cost a lot of money and all that. What if I don't go for chemotherapy? My doctor looked me straight in the eye and said once, two words. You die. So direct, so straightforward. If I don't go for chemotherapy, I die. So we started treatment, quite immediately, and two days later. One day in the ward in the hospital bed. And I was pressing the emergency button and I was calling the nurses for help. So they put the, they put the oxygen mask to my face, and I keep sucking the oxygen but I couldn't breathe, and they put it to the maximum but still couldn't. And then they call the doctors, the doctor rushed in, and he said, push me in the ICU. Only then I could breathe, because the pressure of oxygen is higher in the ICU than wards. Then they discovered that my organs started failing. I think it's because of the chemotherapy, and virus has infected, my lungs. My, my lungs, my kidney and my heart started failing. Then they brought in all these specialties to address, all these three issues. I had, I think seven dialysis for my kidney, and then I was put on some machine, with a lot of pipes all over connected and, you know, strapped to my head and then I was like a spaceman in a space suit. And I actually got claustrophobia and it's really stressful and I'm thinking, wow, being on the life support system, what happens if I got to depend on it. My whole life, looking at the machine and looking at the walls. Every time, just breathing, just breathing in order to stay alive, was really stressful. And then, slowly, slowly, it improved a little bit until they stopped the machine for a little while for me to rest. And then they put it back on again. You know after a few hours they stopped a little while and then they put it back on again, and one day they stopped the machine. I told the person attending to me to not put it back on, and he was shocked, because I was in the evening time the doctors was not there. He said, you need this machine to help you breathe?. How can I don't put it back on? I said no, you stop the machine, I don't want the machine. So they call the doctor, you just stop it.
And you monitor him very, very closely, while I breathe, according to the timing of the machine. I didn't sleep that night. I just concentrate on my breathing the whole night until in the morning. The doctor came and checked on me, and he told the nurses there. Okay, it's okay. He doesn't need the machine anymore. The other thing is, my back. My back ache was so painful that, when I was in hospital, they have this remote that adjust the hospital bed in a position that you want, whether you sit up, or you lie down or whatever it is. And I held on to the remote and I told all those nurses that are attending, and even my doctor. I said, y'all do not touch this remote, because the minute you move it, my back will hurt very much. If you need me to sit up to take any medication or food, let me know, I will adjust it myself. Do not touch it. And at one time, my doctor told me. Okay, I'm going to put you on morphine - painkiller. It felt like starbust, very high and very nice sensation but I lost control myself. I just couldn't control my senses and in another world. They administered that to me twice, and I did not like it at all. So I told the nurses, okay stop. I'd rather bear the pain than to have morphine, I don't want it. They said, okay, we'll put you on Celebrex, okay, that's another painkiller, so even that stopped, I cut it off all myself. No, I don't want it. I'll bear this pain. And I want to fight this pain myself, because I'm not going to be lying down in bed paralysed cannot move in pain, so I stop all my painkiller, and I fight the pain and slowly somehow, thank God, I managed to do it, and when my doctor came and saw me one day, getting up to, he asked me. Mr Lim, can you please put your bed flat down and sit up? I said okay I declined the bed and I set up on my own, and she said, can you just get up and walk. So I just stood up and I walk up and down in a straight line without suffering any pain. And she had nothing to say. She called the nurses, she said, is he on his morphine? The nurses said, she said why? Who stopped it? The patient stopped it himself, and the doctor asked is he on Celebrex or any painkiller? The nurses said no, he stopped it himself. The doctor just shook her head and walk out. So this sharing is for you and everyone, to think. In any difficulty, any trouble. Never give up, fight for it yourself, try our best, of course, we need assistance like equipment or doctors or specialists or whatever, but ultimately the last step is still yourself
Wow, it takes a lot of willpower Mr Sunny, definitely.
So the thing is in hospital, like I said when the doctors told me, I have cancer. And I and I need chemotherapy. It's like a punch in the face. Where is difficult for you to wake up from it, and I like to stress that doctors, no offence man but try to find a more subtle way to tell your patients news like this, and also, you know, hospitals, you have psychologist on standby and or to counsel the patient when they receive news before and after. So this is one thing lacking in our society, I think it will be good to have this, if possible. The other thing I like to say is, don't just follow the diet, you should eat whatever you can eat. Try to eat more healthy food, like vegetables and fruits. But then again, whatever you feel like eating also, do it moderately, like what Theresa said because at that time you will not overeat also. Your body needs nourishment, please, consume the food that you want. And the other thing is, like what Theresa mentioned, a lot of cancer survivors should got out, join cancer survivors groups. One of the group we are very involved in is MAKNA, we offer a lot of support, a lot of help to cancer patients, reach out to us.
We also reaching out we go and do home visits, we share and we advise patients home visits and hospital visits also we do, or even milk, halfway houses near hospital or patients who cannot afford a hotel nearby when they go for treatment and things like that, and we have a small subgroup, which consists of survivors and especially go and visit patients and advise them and their caregivers, you know like what I'm saying now, and we even have sharing of experiences and even our relatives. My mom was a cancer patient, she's a survivor as well, she has cancer, deep down in the throat, and that was about, more than 10 years or 20 years ago and she's very healthy now, she drives around she goes and play Mah Jong. And she is 92 years old, my mom's sister, that's my aunty, also has colon cancer, she also went for treatment and now that she survived this thing 20-30 years ago, she is now 97, or 98, years old, and she can still walk around. So, when a person is diagnosed with cancer, don't think that okay that I'm dead and gone.
In today's technology, medical advancements, there is hope, there is no guarantee 100% that you can be cured. In fact they don't use the term cured, they use the term remission, but there is hope, and there is quality in life after cancer, and there are a lot of people who have to get help right now, me and a group of survivors are also starting groups to help even further, and even in terms of financial, a lot of cancers, become more victimised in theie corporations, where the management will take advantage saying that, Oh, now you have cancer, you can't perform as well and all that, they cut your pay or they terminate you, you know, you're taking leave, when you go for chemo everything break, every time taking medical leave, all sorts of things. So we are setting up funding that will assist them in earning a living well before in the pipeline, there's a lot of things going on for cancer survivors cancer patients, there is hope, there is life after cancer.
Wow, Ms Theresa and Mr Sunny you guys have really gone through a lot, and at the same time you've overcome all those things. What is the piece of advice you would like to give someone who is diagnosed with cancer?
As we said before, if someone was diagnosed with cancer, it's not the end of the world, don't think that okay you have cancer, you are gone. That is the first thing you know, we have talked to a lot of cancer patients is what comes into mind, the first thing they feel depressed and all that is to say is today's medical facilities are. There are a lot of treatment. In many ways, and don't listen too much to the old wives tale of traditional and miracles cure because if you put aside the Western or the normal hospital, doctors, advice and try an alternative, you may delay the treatment, and your cancer may advance in stages where it gets too advanced to be addressed, making it worse for yourself, try to go for the doctors advice and do all the treatments, and then later on you can look into traditional methods, even IKN, institute Kanser Negara has a department, or a traditional complementary medicine department, which gives you, help the body recover better. After all the chemotherapy and other treatment so look in the right direction and wisely. Don't just listen to people take to papaya skin, sweet soursop or mangosteen juice. I'm not saying that those things are not good but just do the right thing as what your doctor has said first. Consider all other things, and during chemotherapy, it is advisable to not take any supplement or herbs at all.
I think the number one thing, the minute the doctor announce. Okay, you have, whatever kind of cancer, the number one thing is don't panic. Let the news sink in the, slowly put it into action, because always remember medical is so advanced now. During my time it was ten years ago, now it's even better.
Another thing is, don't ask why, why me, why this, why that? There is no answer to that nobody, you did not get punished with cancer. It just happened, don't ask why, just get it treated right, recovered and join us to help other patients. That is why, maybe you get cancer so that you can recover from it, and you can help other people.
And the final question, is there a piece of advice you would like to share with someone who is taking care of cancer patients?
Caregiver? For caregiver, support. Moral support can be physical support. For something simple like fetching children to go to school, the cancer patients', children, For example, go to school or go for classes, tuition class, So that the cancer patient can concentrate on the medicine or for treatments and not worried. While in no way to the treatment. Have you already alone over the lunch after that, you should know mine is wondering and worrying.
Here you are, the patient is receiving treatment. But then, at the same time the patient is also thinking of all the things. So it's very good, if you know the family of friends, colleagues, or whatever they can do that, and I like during my time, my colleagues, or rather, even my my staff, they were so careful that if I go to the toilet, in the office. They'll follow me, they were scared I would faint in the toilet. They will just follow me.
Don't give unnecessary advices, all wives tales like eat this, eat that. You need to concentrate on the treatment first.
Just a small help, goes a long way. Just a small,
Or even cook some food. His cousin helped to cook dinner for us, because I was too busy running around, for me as well and for the both of us to drink. Things like that everyday in the hospital and all these things come back in time there's no time for anything we are exhasuted, things like this, but it matters a lot. And it helps a lot.
One more thing I also like to mention to the caregivers is. Take care of yourself as well. If you are not healthy enough, you cannot help the patient.
thank you so much. This has been a great pleasure actually I've learned a lot. We're coming towards the end of the session so before we end, just a little medical disclaimer that this medical information is provided as a general information only this medical information is not intended as a medical advice. So if you or your loved one are in need of medical attention please consult your nearest doctor to acquire the medical attention that you need,
Thank you so much Esther for giving us the opportunity to share with everyone.
Thank you, thank you so much, Mr Sunny and Ms Theresa.