It grieves me to inform that sister has passed on peacefully on 3rd May at 11:04pm local time, 33 hours after in ICU.
However, we are going to be looking at the lighter side of life that she is now no longer suffering from the physical pain she has endured since her pregnancy last year.
Yes, her Diffuse Large B Cell Lymphona was suspected developed during that time and it was only after she delivered she went for the scans and biopsy to find out that she was diagnosed with said cancer.
When she was conscious before to ICU she was already suffering from shortness of breath and got frighten at the worst hours. Then in ICU the doctors sedated her to ease much of the pain and causing her to be somewhat in a trance/unconscious mode however you call it. But sis was aware and could hear us during visiting hours.
Three times I read the Amitabha Sutra for her and it was on the third reading that I suddenly felt somewhat calm. As I held her cold hand I said to mom, "Strange that I would feel so calm right now." And mom replied that "The Sutra reading merit has empowered you to be calm at the last hours."
When my eldest brother-in-law took notice of the blood pressure dropping, he came and told us that her heart rate will drop really fast once the pulse was under 100. Eldest sis was there first, then myself and mom lastly and saw her final breath drawn. I could have swore that when I held her hand one last time and telling her to follow the Golden Light to the Pure Land, I felt a small grip on my hand. Mother thought that was a good thing -- that sister heard us and she responded that way.
Right now I am at KL Kwong Tong Cemetery Management as mom and I wish to chant as much as possible (while that husband of sis went back for other necessary things such as newspapers printing and photo framing etc) because I want sis to be at ease that we are here til the end of the wake ceremony.
She has had a colourful life of happiness and sorrows, and had fought her cancer bravely to the last breath.
I am proud of her that she survived this extra 6 months since the start of her chemotherapy on November. I can find no other comforting words for myself, but that I am glad I had been with her until the very end.
Dearest sis, while you shall be missed, know this : You are forever in our hearts.
I love you. Be at peace in the Pure Land of Amitabha
The coughing started to show streaks of blood and the MRI and CT scan were cancelled due to doctors think her body may not able to tolerate those things for the time being.
We were able to get our minds off things by watching some anime.
Chest X rays were done to follow up what's wrong with the lungs and that the image (according to them) showed signs of worsening.
Then, things happen on the wee early morning of 2nd May.
Sis first wanted to pass motion and after I did so around 1am and 2am. At 4am she starts to shiver pretty badly and I covered her with three blankets. I thought something was amiss and I asked the staff nurse to contact the doctor on call.
The necessary things are made , including chest x ray, contacting the ICU MOs and getting their equipment ready. At first it was a device similar to oxygen gas mask but much stronger than what sis has. The sensation made her uncomfortable, but after much persuading from the doctors, she put it on.
Then I gave a call to mom at 5.30am to notify her, and asked if she can come down.
Mom did by catching a 7.30am bus, and was just in time to see sis before they pushed her bed to the ICU unit. Sis was either having a panic attack, or the effects of one devices (to get her blood pressure up).
Then brother-in-law came and we were told of the situation at hand.
The infection got worsen and there was some kind of internal bleeding in the lungs, and they want to first stop the bleeding and extracting one of those phlegm out by incubating a tube from her mouth to the lungs (or so I understand it.. the sight is not pretty to see) . Since it's ICU we were not allowed to even stay long.
We were also told to prepare for the worst, as this is a 50-50 chance of survival. It's either on or off.
I couldn't help crying then (and perhaps now, too) because we have no idea what is going to happen.
The last time I see sis before I write this is about 30 minutes ago. I can see the situation is under control. But the statistics (blood pressure, oxygen level, pulse rate etc) is concerning.
I hope she pulls through.
26-29 April 2013
Eh, first things first as far as I can remember since the last update.
On Friday sis is sent to HKL for neurology conduction test to find out what may cause her legs to get so painful.
The doctors came up with two possibilities : Either before the chemo her lymph nodes went about the legs and interfere with the nerves, or post-7th-chemo reaction that got the lymph nodes to spread and some went to the legs' nerves and interfere. The latter seems to have a better possibility because if it was the former it would have happened so in the earlier months. The doctors in here (HA) are awaiting the fax from HKL to confirm it. So far the HKL's advice is modify the newest chemo regime and continue give morphine to ease the pain a bit. (Or sis would have trouble sleeping from it).
Since Friday we (mom and I) start to notice small streaks of blood in her phlegm when she coughed. Suspect the pneumonia or lung injection caused her this. She still vomit food after consumption, though. But so far not all the time. However, her appetite seems lessen. She's now not taking much solid food but only on fluids like milk and juice and glucose drink, and the amount consumed is noticeably less. I keep wanting her to take less but frequent meals but it seems she still wants me to "not wake her if she's sleeping".
Mom and eldest sis made their visit last weekend and mom was again staying over to help with the nursing and being there to give sis the much needed support and place to let out her frustrations and all. I asked mom in private how could she be so calm seeing sis like this. She simply said that "it's like when you got lost your way, and once you know where to go it's not so frightening anymore." I saw something in her bag that confirmed she was ready to face the worst if the worst is coming. I do not know how mom can be that strong (only seen her cry about twice in my lifetime so far) . I know I am not.
While the hospital was planning for MRI and CT scan today (monday) but so far nothing conducted yet.
I write this because sis seems to get some rest and I remembered mom said to sis on Saturday, "To some, if they can sleep for 3 days and nights, the body will work their way to fight the diseases". I thought that was quite possible. Sis did not cough much when she's sleeping last night and I think that was a good thing.
The coughing part and vomiting part is what pains me to see. But I also need to understand that if she can cough those out, it would mean lesser of those in her lungs now. The doctors here also controlling their medicines by giving the necessary antibiotic and all.
At night I still could not sleep too well if I hear her cough or being visited by the night nurses (to change iv drip or taking blood samples) . I still remember how I almost sleep walk to find the vomit bag and bed pan. There's also that worry to see her breathing going shallow and not as deep as I thought she would be.
However, just yesterday (Sunday) she told mom she wants to go home to Pg and I think that it may do her some good. The arrangements would be tedious but I think mom already started contact the necessary relatives to make those arrangements. Now all we can hope for are : control / clear the infection, stabilize her body (they probably would delay her chemo now anyway) , making sure her emotions are calm, and that we get the permit to refer her to Pg hospital for home leave. Even at least 2 weeks, I am sure she can feel some comfort at the old home.
She was saying she dreamed of dad and grandma again. Makes people like us (especially Chinese?) to wonder if they are watching over her or sending her preparations ?
On 18th night she slept at the living room sofa (as well as I did) in hopes that the air-conditioned living room could help her sleep. Apparently it was not the case yet, and the morning on 19th I suggested to bro-in-law that maybe cal the hospital and see what can be done.
When bro-in-law called and told sis that we'd be going to the hospital ER, sis was quite upset over the idea. And it's no reason why..
At the ER when she described her legs condition and insomnia and fever etc.. as the ER MO examined her, they referred her back to the ward and admit straight away
I told sis that if she wants to hate, hate on me because it was my suggestion after all. She pretty much rant out about it on things like "What for coming here? See? Putting on IV drip, antibiotic drip. Give panadol just the same as home! Syrup morphine also not working!" All that jazz.
I got so upset that I called mom, and she would try to get a night bus here.
That night when checking for Blood Pressure (Bp) and temperature (temp) I suddenly just asked if they can check her oxygen and it turned out she's lacking oxygen (86% or so) and the nurses gave her oxygen tube.
Night time was terrible as sis moaned and yelled with the leg pain and we got really sleepless nights. I didn't get straight hours' sleep for days and the same goes with sis--or in her case, not even a wink.
Mom really did arrived at 7am or so and the instant I saw mom I hugged her tight and cried out my frustrations, anxiety, worry and fear. I know mom is busy with baby sitting and preparing to babysit another grandchild and that I should not had asked for her to come down, but I was devastated. I really longed for home in Pg. But I know this selfish act would hurt sis on the inside. Then after some meals and the doctors did their round, they suggest the actual morphine (low dosage of course) to see if it would help ease the pain a bit and helping sis to sleep.
As sis is aware the side effects of morphine she said to me, "I might start to mumble nonsense.. don't be afraid." and I tried my best to not over react.
I do not know if sis realised, but she did cried out to mom on some things (some I left the scene so that mom and sis have their privacy) and at one point I heard her rant out on her own husband and money problems. She is aware that the bro-in-law (or I'll refer to him as MF) had the means of getting a new house by using her EPF and insurance money, and she's upset that the insurance is meant for her medical expenses for a year. Mom can only comfort her by saying karma will come to him when the time is right, for the act of abusing her money for the wrong purposes.
That night mom probably got my share on how I go through during night times. Only this time the morphine does seem to work and sis managed some sleep... if were not for the cough and phlegm.
But it was still a restless night as her fever also spiked during the night and near the early morning.
Her temperature was a whooping 38C and we managed to use a wheel chair to get her to a hot shower. I am not sure how she felt, the water was boiling hot to me but to her it's paradise?
I pretty much forgotten how the day went.. just that I know MF's take-away order was not to her taste and she wanted a morsel of McF's Fillet-O-Fish and a sip of coke. That we did and after she's content with her morsel mom and I fished the rest. We know she shouldn't be eating those but I remember that one nutrient specialist at a cancer hospital said, "You can eat what you fancy, but remember to take it in moderation." And it's been 5 months since she last touched a McD food (cokes does not count as I let her sip a few on occasion) so I sincerely hope this would not harm her.
Mom had to go back that very afternoon and I was again on my own to aid her. As I am a sort of pessimist I have no idea what to do to make her laugh. I just watch her sleep with that scary shallow breathing and once again getting woke up for coughing out phlegm and night fever spike.
Managed to get online and wish MegamiJadeheart a happy birthday on dA. Hope she got it.
The morphine worked to suppress the pain and sis managed some sleep.
Fever was still somewhat high in the morning but was back to normal at 36C.
Sis complained about the morphine getting her dizzy and the doctors tried to adjust the morphine to a much much lower dose (though I thought 2.5mg was pretty low itself) and the dose changed to 0.5mg.
Not too bad, in the sense that she still get some sleep, but she did felt the leg pain coming back.
The doctors decided to refer her to another hospital for neurology appointment.
Still feverish at night.
In the morning the MF called for online banking password and I thought mom told her to not give him any more chances to seize money.. But I suspect either sis forgot due to the morphine when she talked to mom, or just ignored what mom told her.
Twice she pass motion under the influence of the medicines. Made a pretty dirty mess, we both did. The cleaning up was just as unpleasant. But if not for the medicine sis would had have constipation from the morphine's side effects.
Morning came and her fever spiked a new record of 39.1C! That was the most horrifying reading.
Later doctors did their rounds and we agreed to try not to rely on morphine and observe how she'll cope.
The pain started to come back in the afternoon, but so far sis managed some rest in the afternoon so I am not too worried about night time yet (but it is night time now as I write this) . I am, on the other hand, had sleepless nights over the pass motion and it was a first for me to walk in a half-drowsy state. No, I managed some sleep. Just that every hour I'd wake up to coughs and all.
The other hospital's neurology department's appointment is set to Friday morning.
And I managed a peek at her online banking statement. There was decrease of money from her ATM statement that I accidentally saw. When I asked what did he asked the money for, and she said it was for the new home.
I hate to be negative at this point, but I either hope that he would really use the money for that, or conning her money for something else.. makes me only to dislike him more. If I could get into sis online banking account I'd change the password so that he won't get any more money.. Oh well, wishful thinking.. can't be a criminal now can I?
I hope for the best that sis can pull through both the fever and his leg pain.. The other thing that concerns me is her chest.. I thought I saw the X ray showed something whitish at the lower level of her lungs (dunno which side) .. please let that not be some infection..
When times like these it felt that one day has been an eternity. Today is no exception.
Sis could not sleep last night and her fever is still not fully subsided.
As of now she had two showers in the morning and afternoon.
While she was bathing I asked her was there something wrong from the (attempted) nap earlier, as I thought I saw her put her hand over her heart, and she said yes. There was a tight feeling, and that worries me. She had that after her consumption of chinese herbal pills.. as of now she's sitting on her sofa playing candy crush saga and listening to mp3..
A cosplay friend said his father had cancer and done chemo yet he was gone via heart attack. I sincerely hope this is not happening to sis.
I just checked her oxygen tank in our bedroom and it seems that there's still some air in it. That is just in case.
I would actually hope that medical attention is necessary but I know sis' does not want to. She told me on first shower that the next chemo she would pull the drip away and empty it in a toilet. I hope that's not her real intention to say that or that's kinda a coward's way to say it.
(10 minutes later) As expected, when I just asked her and she says she does not want to go to hospital for check up, and her current temperature is 37.7 degree Celsius.
Last night (16th-17th) was just ... how to put it...? tiring?
Started sometime around midnight she took one panadol to try fight the fever , which was somewhere 37.7 degree Celsius. Then 4-5am after a trip to the loo I measured her body temperature and it was 38.1! I silently grabbed the basin and face towels for sponging her and put on some hydro patch on her back and stomach area. It was a relief.. The morning around 8am it was down to 36C.
But as of now, nearing 4 pm it's back to 37C.
While I understand that this is one of the signs of infection but I do hope it'll subside soon, along with this chesty cough and occasional "felt-like-would-vomit" scenario. Not just sis, even I myself am going insane over the whole ordeal to the point I wept silently after the midnight sponging. Sis could not really fall asleep again and that is just not helping.
Sometimes I asked stupid questions that got her mad at me, but I think it's just another way for her to pent out .. but honestly I want her to rant out to the husband than me.. I am going to admit here once again and I do not like him.. at all. He is all good talk and all on the surface but all these 'male dominance' in the subconscious level is driving me nuts! I'm freaking GEMINI and that means I DISLIKE to the FULLEST at being TOLD what to do and limit my freedom. (and that includes freedom of speech--- in his house.. HELL, the lease is under my mom's name. He asked for mom's pension money to get this house and now he's using my sis's EPF and Insurance to get another HOUSE and complains he has no ability to tackle two home loans at the same time.. SCREW IT. If you can use our money to get you a house and into this trouble, how can you not get out of it!? You are just one damn lucky bastard that you can use OUR money and not having to pay a cent! MUTHAFAKKING CHEATBAG. And don't try to fool mom.. she knows what you are playing at.. if something goes wrong with sis, you automatically get the second house without having to pay sis' side of the home loan. I asked you once what are you gaming at for the second house and you said 'to change environment and give sis a mental boost. Well here's something.. even if you change environment but if you still bring that attitude and all these furnitures and all to the new house.. and it would look just as same as the current house is.. that you wasted our money for naught.. and you're only good at selling them off at higher price for pocket cash and some stupid online POKER game)
GOD I MISS HOME!
I knew why I cried.. not only on sis's case, but I am totally home sick! Over 2 weeks in here and I cannot have a short 1 night break of my own in Pg. The sense of belonging is once again knocking at my mental door as I have no idea where I belong now. Other than that is just plain personal that I can't rant out to anyone.. but the social websites like some drama-queen right now.
The fever still comes and goes. However, the doctors allow her to go home and rest for 2 weeks and return for next chemo on the 30th April. It's kinda surprising they would let us go home but with caution : 1. monitor and control the fever (sponging and meds and those off-the-counter pain killers (panodol) ) and 2. Make sure she does not fall. These aside, the main aim are these : 1. get enough rests and sleep. 2. get some exercises such as slow walking for starters.. 3. gain some weight. Sis managed to chuckle at that third one, saying, "If I can gain about 500gs I'd be snickering." At the last weighing she is 47 kilograms in weight, and much to my disappointment, I am now weighing a whooping 56 kilogram... gained 4 kilograms since February. (And it was no thanks to that I could not fit in my Queen's skirt)
Well, we are still here at Ampang Hospital ward, and since 11th the fever raised, subsided and repeat. So far no actual vomiting happening. Just that when she feels she's going to have a fever, she would shiver.
Appetite-wise she can eat some food and I got her coconut juice twice on 12th and 14th, while her husband got her barley water everyday. All these to cool down the fever of course, and the 'panadol' tablets from hospital.
We got a bit of lecturing from the head specialist on the 13th, when she took out her temper from a previously complaining patient on us. Well, the head specialist is no fool anyway, she used her words wisely and not scolding us with swears and vulgar stuffs. But c'mon... when we were trying to get back on the 7th April you guys are the ones said "no need blood transfusion" and that's what got sis to be upset and went out for second opinion on the 9th, so, in a way, it's the hospital's miss to keep sis on the 7th, so that she could do the stem cell collection on the 8th. But anyway, given sis' physical circumstances on the 7th and 8th I doubt they would do the stem cell collection anyway, with the blood investigation count so damn low and fever.
Today's rounds was first by one of the more gentle-mannered counselling doctor and sis said she has agreed to do the stem cell collection, but we got our terms.. first things first her fever must go down, and second she is both physically and mentally ready. And that no chemo be underway before that. Looks like fortune favoured us this bit. The previous chemo is a gap of 27 days and not 21 days, so we got these precious few days to control and tackle down the fever. That is first and foremost. Then the follow-up rounds by the MOs and head of department went kinda calm. Well. That is all I can write for now. I already start to feel the load on my shoulder as I did not get any break time (mom coming in to take over for one weekend, that is) and the husband was just as busy.. to the point he can't find time out for me to go back to Penang for my own xray appointment.
Will try pray for sis. Fever is just as bad and I hope it can be subsided soon.
On the 8th she felt weak again, and once again vomited her food. On the trip to the loo I had to ask bro in law to help support her, because she fell back on bed right after standing up.
09.04.2013 - she woke up and wanted me get bro in law, and she said to him she wanted to go to Damai private hospital. He didn't want to at first but she got him sending her there.
Once settled a single bed ward the blood test result was far lower than of the 7th! Palette or whatever you called it was dropping to 5! The doctor there quickly ordered the govt. hospital to get her 4 packs of palettes and 2 packs of blood for transfusion and not to get off the bed. She felt a lot at ease to hear that and managed to relax a bit even though the IV drip was a pain to bear on the hand (at ampang it was at the thigh) . The vegetarian meals there got her appetite up and she vomited only the dinner contents.Meaning her lunch she had no problem with it.
10.4.2013 - spent the day at Damai ward for monitoring. That time she had a fever and her hands and legs were shivering (and I thought it was due to the air-conditioner..what a mistake I made!) .. had some painkillers and later in evening some argument between her husband and herself. Apparently doctor wanted her to ampang for better facilities and when the husband told her she refused to go back there. While I had trouble sleeping, sis has no trouble with eating this time. No vomit ! What a relief.
And now.. this.. . 11th April. The Damai doctor came and explained to her why must she be transferred to Ampang due to the facility and also that her blood count is not yet back to safer measures, which in his words, 'can be life threatening.' Reluctantly sis nodded with the arrangements.. and we are back at Ampang hospital.
The blood count as of now is still at non-safe level, but at the moment the doctors' priority is to stabilize her sodium and potassium level. Blood packs will have to come at morning (and I damn hope they will!) Sis managed to take half the portion of lunch and one-third of dinner. I do hope the doctors will respect her decision on no chemo, and would help with the blood count first and not mention chemo stuffs for now..
It's now the war of two sides of the coin... husband and doctors wants her to finish chemo.. sis and I wanted to stop chemo (plus elder sis and a friend of mine..) I am still worried about sis (she gave me a fright just now when she held her breath during nap time) but right now I gotta stand by her to support her no chemo decision..
There's just gotta be some better way than relying on chemo.. we know laughter is one but that must get sis and myself to do it first..
What a day..
Started off at 6am with an alarming wake up by brother-in-law coming in our room to get the vomit bag, and apparently sis didn't want to wake me up for a mouthful of drink, and she sat at the sofa vomiting her drinks again.
She then asked how many days passed since the recent chemo and it's either Day 11 or 12.. which she suspects loss of blood and wanted a blood transfusion.
We packed everything and rushed to hospital.
2 hours later... the blood test result came in..
WBC raised from 1+ to 7.7
HB was 7.9.. a bit lower from 8.7
platetee or whatever you called it was 23.. better than 15 the last time but still bad compared with 114 last week.
In the end, the doctors said no need blood transfusion.
With that, sister made her decision.
She wants to stop receiving chemo, and go by alternative methods (my guess is Traditional Chinese Medicines)
By somewhat bluffing to the doctors says wants to go home, she literally puled the IV drip and got us pack everything back home.
Once at home, she looked kinda happy.. and thanks to the IV drip that infused with some antibiotic and anti-vomiting .. she ate some porridge.. yeah.. she still vomit a bit but it had looked better than previously.
I was at a point want to slap her senses back at running away from chemo, but I also happen to know a friend who survives brain cancer without depending on chemo, and had heard of other patients who made life changing decisions by stop receiving chemo. So there I was, wanted to stay neutral on either side of the coin (in this case, between my sister and her husband and the rest of my family) , gave sis a hug, and she asked me to stay with her.
I told her.. don't regret on this decision.
And she told me, don't regret my decision as well.
What did I decided back in early November? That the instant she was going for chemo, I'd stop my studies to be at her side. (given the situation). And I still don't want to regret that.(as much as I am now unemployed and no money and no cert)
Now comes this turning point, as I write this at 6.26pm, and we went from taking chemo, to taking alternatives.
What is lying ahead of us, I have no idea.
There might be chances of relapse.
The End may come at any day or any hour.
I'll just do what Megami Jadeheart would do for her cousin...
Making sure she is having happy moments as long as she can.
I cried a lot these dew days, and I remembered a cosplay friend said this to me.
"Cry now while you can.. and be sure you DON"T cry when it's time (to go)."
He means for me to be strong til the end.
With that, I may have to once again, disappear from dA.. but to my roleplay friends I will try slip in a post or two.
I am sorry I have been reading everybody else's journal and not knowing what's going on... but whatever it is, I pray the positive force in the universe be with you.
Sister begged to go home yesterday (Friday) and when the doctors gave her leave and wanted her to come back on Monday morning, sister does not want to go back to hospital for the collection of stem cells, the next cycle of chemo and the transplant.
When she got home to try get some sleep, she couldn't and asked her husband to get her some sleeping pills. She took two last night (despite the instructions saying only once a day) and still did not get any easy sleep.
Sister also walks really weak , like would fall or collapse and I tried my best to support her.
She cried a lot yesterday, and blaming herself why is she so useless and unable to sleep. She once said that she would rather die, and I tried to tell her to not think like that.
Now what shall we do? Sister seems to be giving up on the hospital treatment and was taking Chinese Medicines, yet still she vomit whatever she consumed. Is this very bad for her? Are we losing her?
I asked her if I can play some Green Tara Mantra for her and she shook her head.
I am very afraid. What can I say to her to comfort her troubled emotions?
We are clinging on a thin line of Hope now. I had thought that if she can sleep then it would be a good start to wake up feeling loads better , then would fight back on the next chemo and stem cell collection. But now I am beginning to feel uncomfortable..
She ranted a lot to mother too, pouring out her emotions. She is concerned that her husband bought a new home using his and hers EPF and her Insurance cover for the down-payment, and mom was displeased to hear that.. Thinking it in a con way, if the lease is under sis and the husband's name, and if anything happens to her, he would still get the house automatically without having to pay on her behalf.. So when sis asked what to do with this current house they are at.. mother says would rather have it rented out and pay the rental to her account, then let it be sold out.
Oh, I am in such a complicated mood now.. I can't think straight.
Watching sister suffer like that brings me great pain. Even mom (through phone) also expressed her sadness. "You know I hardly cry" she said, and through the voice I can tell mom's very sad and on the verge of crying. "I want to see you children send me off when I'm gone..which is more natural than the other way around." She said.
I really hope sis can endure this and be strong and healthy again.