Escolar Documentos
Profissional Documentos
Cultura Documentos
by
Ilene Ong
Isaiah 54:10
This *Journal and the information contained herein is restricted and/or privileged information and is intended only for confidential presentation at my discretion. None of the materials provided in this Journal may be
used, reproduced or transmitted, in any form or by any means, electronic or mechanical, including recording or the use of any information storage and retrieval system, without my written permission. The
information provided herein is my personal views and should not be construed as personal medical advice. I shall not be held responsible as to the accuracy of the facts of the disease. The information published is
not intended to replace, supplant or augment a consultation with a health professional.
I accept no liability whatsoever, whether it was caused by:
1. Accessing or other related actions to this Journal.
2. Any links, and/or materials provided/attached to this Journal.
I disclaim any and all liability for injury or other damages that could result from use of the information obtained from this Journal.
*For purpose of definition in this disclaimer clause, "My Journey with Mum and MDS" is referred to as the "Journal" in this context.
What was supposed to be a fine Friday turned out to be the beginning of our
worst nightmare! It was 14th of April 2006, when my sister went to do her
and told mum to come along to have hers done as well since mum had
never had a full and thorough health screening done in her entire life! All
mum does is she goes diligently for her yearly tests of the normal blood
the hospital. So little did we realize that this simple routine check up would
mum's and that got us worried. Assured mum not to worry as probably the
results are being sent out in batches and we should be receiving hers in due
course. However, after waiting patiently for the results for over two weeks, I
with anxiety and so on 5th May 2006 I called to enquire on the results of
Suddenly, my hands and lips began to quiver and my heart started to flutter
at a rapid pace. I told the doctor not to transfer my call but I would instead
given the run about as the consultant physician revealed that the blood
Subsequently, an appointment to see the oncologist was fixed for 13th May
appointment was scheduled for 10th May 2006 with the hematologist.
from and left it at the discretion of the consultant physician. Never had my
mum or I envisage that from here on, the string of appointments with the
test and the evaluation will be made known to us when we see the
collected by inserting a needle into a vein and allowing the blood to flow
into a tube. The blood sample is sent to the laboratory and the red blood
© 2005 American Association for Clinical Chemistry 1 Downloaded from Lab Tests Online
(http://www.labtestsonline.org)
Teasingly mum said she was dying. There we were, seated with our arms
folded and anxiously waiting for our turn to be called into the doctor's room.
ordeal as we waited and waited and waited. This being our first visit, mum
and I were so tensed up and feeling so uneasy and worried and I could feel
my heart beat drumming through the chest. We didn't know what to expect
and my mind ran through slides after slides of "what if". Suddenly I felt so
cold and began to shiver. Turning to mum, I could see that she too was
trembling away. Don't know whether it was because of the cold air from the
almost three hours of waiting. The nurse showed us into the room and with
wavering lips, we greeted each other and took our seats on the other side of
the desk. I find it strange that doctors no longer wear that white gown
Fortunately the temperature in the room was to our liking but the
blood test and then looked at mum and told her that the results are
indicative of mum being anemic as her haemoglobin count was low and so
are her red blood cells. Very politely the doctor then guided mum to the
small little corner of his room where mum was asked to lie down so as to
any unusual bruises or lumps. He then went over the medical history with
mum asking questions as to whether mum would gasp for air when doing
chores like taking the stairs, whether she has a good appetite, whether
among her siblings any have been diagnosed with cancer and so forth.
Whilst the doctor was busy examining mum, I on the other hand was busy
examining his room. On the shelves sits souvenirs from all over the world
and standing in between them were "Thank You" cards, probably from
patients who have recovered. Posters of flowers hung on one side of the
wall and another side stood a tall vase arranged with artificial orchids in it.
Hmmm….I thought to myself, this hematologist must have a penchant for
orchids.
The doctor returned to the desk where I was seated while mum got dressed.
Once seated, the doctor turned to mum and told her that he would like for
hospitalization was warranted. Mum and I were taken aback as we were not
prepared for such scenario. I then asked what sort of thorough investigation
he proposes to do and he said "a bone marrow aspiration". With eyes wide
open, I stared at the doctor and then quickly turned towards mum and saw
mum's shocking expression. For a moment, the room was quiet with mum
and I still trying to grasp what was just said. "Is there a necessity to do a
bone marrow test on my mum" I asked. The doctor then explained further
as to why he needed to do it. With worrying face, mum asked the doctor
how is it done as she has heard from friends that it's rather painful. The
doctor was very assuring and comforted mum. Regardless, mum was
having to do this test and I was firm in making the decision for her. It is
easy for me to say as I am not the one going under the knife. I felt so sorry
We asked the doctor for permission to return home to pack mum's personal
belongings. The walk to the car park was a very quiet one and so too was
the drive home as neither mum nor I were in the mood to talk and each one
of us had our mind working on overdrive thinking what would the
consequences be. My hands and legs were trembling with fear when I
entered the car and my concentration was poor. I couldn't make out any
sense of what the hematologist was saying earlier in his clinic and neither
could mum. Along the way, I stopped at one of the hawkers centre for lunch
as we suddenly realized that we had not had eaten anything since the time
we woke up. Mum daren't take her breakfast in case the blood test requires
her to be fasting. I ordered chee cheong fun with prawn paste for mum and
fried kway teow for me. Lunch was hard to swallow and neither mum nor I
Upon our return to the private hospital, I was taught the routine of checking
either a single bedded room or a twin sharing room for mum. I wanted
mum to have a comfortable room during her stay in the hospital. Mum
Mum, besides having been admitted to the hospital for purposes of child
birth many, many years ago, had never had the need to be admitted again
into any hospital for anything else and this admission would be mum's first
after so many years. Mum takes very good care of her health and seldom
do we hear mum complaining that she's not feeling well and therefore there
Shortly after settling down in the ward, we waited patiently for the
hematologist to come by. Not knowing when he would drop in, I daren't
leave mum's bedside. By the time the doctor came, it was towards late
afternoon. The hematologist whom we met at the clinic conducted the bone
marrow aspiration himself. The whole procedure was carried out in the
ward itself under localized anesthetic. I was under the impression that a
bone marrow test was a massive kind of operation that needed to be done
in the operating theatre by the surgeon! I was not allowed in the room
when the procedure was being carried out and so I waited paving up and
down the corridor in front of mum's room. The smell of the alcohol and
iodine solutions was so strong and emitted along the corridor. In less than
30 minutes, the whole procedure was over and I saw the blood stained
Blood and bone marrow tests are used to detect and diagnose
often carried out over time to determine if MDS has progressed. The patient
comfortable. The doctor feels for the bony protrusion on the right or left
back side of the hip. This site, not the spine, is the location used for the
bone marrow examination of MDS patients. The doctor swabs the skin with
iodine and places a sterile towel and drape over the area to reduce the risk
of bacterial infection.
A small area of the skin is numbed and a long hollow needle is inserted into
the hipbone to remove tissues from the bone marrow, blood and a small
needle is inserted.
The doctor told me that mum would be asleep for at least the next 2 to 3
hours but when I went in to check on her, she was already half awake and
she told me to go home to get some rest. Obviously rest was the last thing
Later that night, the doctor came by and advised that two pints of blood
Discharging mum from the hospital and going home the next day received
mixed reactions from mum and me. Relieved and delighted that mum is
able to go home so soon and that mum did not feel any pain whatsoever
from the insertion done. But we both couldn't help worrying on what the
20th May 2006 our next appointment with the hematologist. This time mum
and I came prepared with our sweaters, managed to organize our time to
have our breakfast first at the coffee shop in the hospital and then return to
the waiting lounge. Anxiously we waited for our turn to go in. Once inside,
abnormal growth).
MYELODYSPLASTIC SYNDROME
MDS is a group of diseases in which the production of blood cells by the
is typically more active than normal and yet the number of blood cells in the
the bone marrow are defective and are destroyed before they leave the
low blood cell counts. A reduction in numbers of all types of blood cell is
is too old for this to be an option. Men are more likely than women to
develop MDS. This is most marked in the typical older patient group. Cases
occurring in younger patients are more evenly distributed between men and
90% of patients are over 50 years at the time of diagnosis. Some doctors
The following are being explained in detail as this is the progress my mum is
heading towards.
The marrow cells that produce red cells appear abnormal. The white cell and
platelet producing cells may also appear abnormal but the proportion of
primitive cells (blast cells) is not significantly increased. The main clinical
feature is anemia, which is usually mild to moderate but can be severe;
often the red cells have a larger average size (mean cell volume or MCV)
than normal. The number of white cells and/or platelets may be lower than
normal.
of five or even ten years, but the average survival ranges from two to five
years.
In this form there is an increase in precursor blood cells (called blasts) in the
Patients with RAEB have between 5-20% blast cells in their bone marrow.
Patients with this form are more likely to have reduced numbers of platelets
and/or white cells as well as red cells in their blood. This form accounts for
proportion of blasts (20-30%) in the marrow. This form accounts for about 5-
15% of cases. It has recently been proposed that these patients should now
overt leukemia (over 30% blasts in the marrow) is high (between 60-75%)
and the treatment is similar to that used for acute myeloid leukemia.
The median survival is six months or less but chemotherapy, with or without
In CMML the red cell precursors usually appear abnormal. The defining
feature of CMML is that the number of one type of white cells (monocytes) in
the blood is increased to more than 1x109/litre. The marrow may or may not
low platelets.
bone marrow shows features similar to those seen in other forms of the
disease, but it also shows features of the related diseases known as the
result of the routine health screening. It was only after being queried by the
hematologist at the initial appointment did she then tell us she has been
feeling giddy and anemic at times. Anemia tends to lead to fatigue and
simple anemia, whilst about 20% present with infections or bleeding which
my mum is now suffering from it. Infections are usually either bacterial
Not all patients will receive active treatment straight away because in most
duration. Patients who are not starting treatment will have regular check-
patients. The cause of this disease remains unknown at this time. The most
important aspects of the follow-up of patients with MDS are regular checks
leukemia.
The treatment for a high proportion of patients is supportive care which has
levels of iron. MDS is a puzzling, life threatening set of disorders for which
RESEARCH
Upon this shocking discovery, naturally the internet was my source of help.
as I can. I need to learn about mum's condition and its treatment as well as
the medications and their side effects. I browsed the numerous websites to
research institutes and specialist hospitals gave rise to more confusion and
ultimately I became sick from the migraine attacks. I even subscribed for
reading materials from the MDS Foundation in the United States of America.
In view of her MDS condition, over time, mum soon developed other
complications like very low white cells and declining platelet counts and she
steroids. Mum suffered from drip site infection on the dorsum of her right
hand. She had petechiae on her trunk and was feeling giddy. Mum was
bleeding from duodenal ulcers. Then she had herpes gortr and cellulitis.
Then the worst happened. It was the second day of Chinese New Year 2007
when mum fell terribly ill and I thought to myself, oh no, this is it. Her time
has now come to leave us all. We rushed mum to the private hospital. The
his family and me and my family were all seen waiting patiently in the
emergency ward. The fear of loosing mum at that time did cross my mind.
transfusion. The hematologist did another bone marrow aspiration and the
results showed her MDS status has worsened but he managed to maintain
relatives came to visit mum and the string of visitors was endless. Our
family celebrated the significant seventh day of the Chinese New Year with
mum in her hospital room and also "Chap Goh Mei", the fifteenth (and the
last) day of the Chinese New Year celebration. From her room we had a
good view of fireworks being displayed from one of the nearby shopping
malls. Watching the fireworks with mum from the hospital bed sent a tinge
of nostalgia flowing through me. This will definitely be a Chinese New Year
MUM'S STATUS
Mum was due for her check up on 3rd March 2007 but, regrettably, before
the appointed date, mum had to be readmitted again as her platelet count
dropped. She was of course given platelet transfusions amongst the tray
intravenous. She was discharged only on 11th March followed by check ups
endoscope, and endless amount of blood and platelet transfusions and not
forgetting the dozens of medication that she has consumed orally and also
readings of the blood count. A chart to record her admissions and the
length of stay in the hospital and, not forgetting, a chart reflecting the
amount spent at each out patient consultation and admission. Mum too
private hospital.
mum's 'second home' and in no time mum was a familiar face on the floor
where she was warded and the nurses soon grew fond of her. To some, she
was being referred to as the "teacher". This is because her doctor warned
the nurses "don't pray, pray this elderly lady's English is powerful and you
nurses could learn a thing or two about Queen's English from her!" I have
lost count on the number of times that mum has been in and out of the
hospital since she was first diagnosed with MDS. There were times when I
mind. It is truly disheartening when you read such a report especially after
what mum went through - the number of times the needles were pricked
into her thin and fragile hands. Mum has very fine veins which proved to be
problematic when trying to set in the line for blood and/or platelet
transfusions.
LOOKING AT ALTERNATIVES
Hospital and was given an appointment for the 2nd April 2007.
were all so desperate looking for a cure for mum. Relatives and friends
of other general practitioners too. However, the more we hear the more
confused we all became! Unsolicited advice came gushing in! The motives
are many. Some tried to 'sell' health products, some asked to seek
I realized the time has now come where my mum can no longer live alone.
Getting a foreign maid, I felt, was the best care option but my mum
the maid, my conversation which started off very well would soon lead to
When your loved ones fall ill, suddenly your entire routine lifestyle changes
having to rush my mum to the hospital any time. These days, faced with
wasn't prepared for. There were days when I could feel happiness
enveloping me but then, all too soon, the feeling of sadness soon set in. My
emotional feelings were on 'high gear'. What a 'topsy turvy' ride I'm on! It
is truly an emotional roller coaster ride. But with the passing days, I learned
best to come to term with the fact that after a long and arduous fight
there's nothing much the doctors could do for my mum and that death will
by this disease. This illness is unfair! Why did you pick my mum to be the
victim?!
After a year and a half of being treated at the private hospital, mum now
it has gone beyond our means to pay for the exorbitant bills of the private
As mum grew weaker, she realized the need in having a maid to attend to
the house chores and her meals. I live quite a distant from mum's place
and shamefully could not help mum in caring for her meals. Fortunately for
us all, my brother, who cooks very well I must say, took great care of mum's
meals. So when the maid arrived, mum was relieved of the house chores
and found she could spend more time visiting friends and shopping malls
during the times when she was feeling on top of the world.
Finally I'm able to see mum feeling a lot better these days although she still
needs her frequent transfusions of blood and platelet. I think the switch
from a private hospital to a government hospital was timely and has done
her a lot of good. So you see, it's not always the most expensive things or
places that would offer you the best of quality. But I must admit here that
the beds and the wards in government hospitals need 100% make over! So,
just have to tolerate and endure the system run by the government
TAKING A BREAK
Seeing that mum is more stabilized now, I took mum for a short holiday to
we spent the most wonderful and memorable holiday in Penang with mum.
Mum was, as usual, her jovial self and during that short stay in Penang, we
indulged ourselves to the hawkers' spread! Eating like as though there's no
tomorrow! Mum's appetite was just incredible! I'm so glad for mum that
After we got home from one of our most joyous and splendid holiday, mum
Time and again I had to thank each and every friends and relatives for their
concerns and kind thoughts and at times even going beyond their way to
prayers or just being there for us lending their support which really meant a
lot to me and I truly appreciate them all. No words can express how
thank everyone who has come to visit my mum, whether at the hospital or
at home. You all have been of great moral support. Also to the many
bloggers out there whom I don't even know who you are or how you look
like but yet you went to the extent of offering your help unconditionally!
(When mum started feeling ill, I started to blog about her illness with a hope
VERY MUCH!
All of you have helped me through this difficult time in one way or the other,
more than you know. I appeal to everyone out there to continue to pray for
this battle, perhaps spiritually our own mind and body are able to. It's a
battle which my mum and I know it's a no win situation but we would still
like to continue steering head on. So for now, us, the children, together
with my mum, shall continue our journey into the twilight zone to discover
what else could be in store for us. A true test from the One above!
Although the counts on her red cells and platelets continue to drop, my
mum is spiritually strong. If you were to hear her speak over the phone, you
would never have guessed that the lady on the other end is a very ill person
as she sounds very strong and vibrant. I am truly glad that mum possesses
strong will power and wants to fight this battle. There were times of course
when she wanted to give all up and I can't blame her for thinking that way
as it is truly painful to see her suffering. But I think that when she see us,
her children, who have and will continue to go all out to seek the very best
treatment for her, I reckon she too is determine to join in the fight together.
Mum is very well informed of the illness she's suffering from as we told the
doctors not to hide anything from mum. She didn't want to be spared the
punches and was totally involved in all the medical and nursing
management.
Through this episode, I had mustered enough knowledge to understand
personnel for having understood how and what sort of blood, plasma and
compared to the nurses who have been working there for years!
LEUKEMIA STAGE
Then, just when I thought my mum was doing comfortably by getting her
normal transfusions and oral medication, on 8th May 2008, the doctor
informed mum that her MDS has now transformed into the leukemia stage.
It was 2 years ago on 10th May 2006 when mum was first diagnosed with
MDS. Mum's determination to fight against her illness for 2 years is a battle
half won. As the doctor needed to meet the family members, I took time off
from work and met the doctors on 13th May 2008 which was mum's next
appointment date.
interfere with the production of abnormal cells. AML is the most common
acute leukemia affecting adults and its incidence increases with age,
females.
with leukemic cells, resulting in a drop in red blood cells, platelets and
The doctor proposed his suggested treatment for mum and recommended
months to live. It was the most miserable day of my life upon hearing this
news and my emotions got the better of me. Mum on the other hand was
putting on a very strong front and I really salute her for being able to uphold
herself so well. The journey home from the hospital was a very quiet one
with neither of us speaking up. I bawled out even more when the track from
cheeks.
That day, we were invited by my aunt and uncle to drop over at their place
for lunch after the check up was over and upon reaching their place, I just
burst out crying uncontrollably like a little child. I just don't know why and
as hard as I tried to control myself, the tears just refused to stop flowing.
For that, another of my aunt who was also there told me that I shouldn't cry
in front of mum but instead should be strong for mum. It is easy for one to
say. It is only when you're faced with compelling news of your loved ones,
powerless and helpless. That night I started to 'bargain' with God for more
time and money in getting treated, the illness got the better of her.
Notwithstanding the fact that we've been cautioned right from the initial
stage that mum will succumb to this leukemia stage but deep down inside
me I was praying and hoping for miracles to happen and that mum's
lifespan could be stretched further than the anticipated 3 years. But alas,
this is not to be the case. My mind was so mixed up with thoughts of denial
SOUL SEARCHING
I needed to know more about this disease and the best treatment strategy
made it so hard for me to think of the things that I need to know and to ask
the doctor. I kept thinking that this isn't happening to my mum. Surely
there is some mistake. Maybe things can still get better. Not wanting to
believe and accept what the doctor at the government hospital had
mum's very first hematologist at the private hospital for a second opinion.
This time, I made sure I wrote down all the questions that I needed to have
with the hematologist, both mum and I, with our fingers tightly crossed,
listened intensely to what he had to say and our hopes were dashed when
he too concurs with the views of the earlier doctor at the government
hospital. The only consolation we had from this hematologist was that he
displayed more compassion and both mum and I were very at ease with him
and the advice given by him was more coherent and he proposed that mum
have been destroyed. After all said and done, the doctor concluded by
saying that it is the patient's desire that we had to respect. With this
My sis then started mum on a detox programme with a view of getting mum
fit and ready for the chemo at the government hospital which was
When 22nd May 2008 arrived, eagerly with optimism, both mum and I
our hopes and inspirations were dashed when we were told that, judging
from the results of her blood test taken that morning, mum will not be able
to withstand the entire chemo procedure and would like to call it off.
sick. I felt so deceited. The hematologist who was attending to mum then
called for the head of the team and together they presented the most
thereafter reverted with the same conclusion that mum would be very much
better off enjoying quality life rather than spending the balance of her life in
misery undergoing the chemo procedure and staying in the hospital for the
rest of her life. Chemotherapy for my mum is not beneficial because the
that have progressed to AML, she would be less responsive to chemo than a
After a long and arduous journey, the news of mum having no curative
In the presence of the two doctors, I wasn't embarrassed when I just let the
tears flowed down freely onto my cheeks and sniffing away at the mucous
that were dripping from the nostrils. The more the doctors consoled me, the
more the tears came. Mum on the other hand, who was seated on the other
side of the doctor's desk, was very composed and displayed no sentiments
problem, she did not manage to hear the entire conversation which to me is
a blessing as I did not wish for her to hear such unpleasant news.
the doctors to treat her back to good health and present back to me my
bubbly mummy. The thought of loosing mum in a few months or, if we are
was consumed with worry and anxiety while I tried to brace myself for the
the blood and/or platelet whenever the need arises. The doctors will
continue to monitor mum on a weekly basis now. The doctors have warned
that mum will be very susceptible to viral infections and when that happens,
the doctors shall treat her accordingly. The doctors have prescribed
maintenance. There is nothing much the doctors can do for mum now and
surrounded by fear that one day my phone would ring and the choked voice
on the other end would tell me my mum's chapter on earth has ended.
But when does one actually stop seeking treatment? Is it ever appropriate
to draw the line and say there's nothing left to do but just sit back and wait
for doom's day? Not being able to undergo the chemo but reverting to
and me, we continued to explore the internet on how best to maximize our
time with mum and we found a website informing the workings of certain
drugs that were used on patients with similar illness as mum and has
names of these drugs on her next appointment which was scheduled for 29 th
May 2008 and to check if mum could be prescribed the same. Regrettably,
busy as he is, the doctor was impatient in sparing that extra few minutes
with mum and just dismisses her off by saying that those drugs would kill
her instead. I would like to belief that the doctor understood the name of
the drugs and its curative functions before saying that those drugs would kill
To assure myself, I told mum that I would like to bring her back to the
private hospital for a second opinion on the drugs but mum said "no" and I
felt even more powerless. Mum told me to let her go and that she doesn't
wish to continue further as she is now getting very tired on seeking
MUM'S BAPTISM
5th June 2008, was the next check-up. At this check-up, mum’s platelets
and had to be admitted for observations. But 24 hours later, not even one
doctor could tell us the cause of her bleeding while mum lay lying on the
hospital.
Three days have since passed and mum continues to bleed profusely.
Doctors are still uncertain over the cause of the bleeding. One, it could be
an ulcer somewhere or two, it could be due to the low platelet. As the days
passed I could see mum turning more pale and weak despite all the blood
and platelet transfusions being given. I think mum could sense that her
time on earth is coming to an end pretty soon and so she asked my brother
and sister as to whether they have any objection in her accepting Jesus
Catholic and in respecting her desires, both my brother and sister gave their
unconditional support. My brother then proceeded to contact my cousins
and aunts who are Christians to help with the baptism arrangements as
So on Sunday night, 8th June 2008, mum was baptized a Roman Catholic by
Father Albert. Mum took the Holy Communion the following day. The
baptism was carried out from her hospital bed at University Hospital Kuala
Lumpur and was witnessed by mum's brother and sister and their spouse
and family and not forgetting us, mum's children. It was very emotional for
me and my brother and sister. That night I could see mum was at peace
and slept well. The following day, mum continued to sleep most of the time
waking up only for nature's call. She didn't talk much that day. However,
on 10th June 2008 mum was looking and feeling much better as compared to
the previous days. She had an endoscope done and the results revealed
that there are no traces of ulcers. Therefore the source of the bleeding
Mum had not had any solid food nor was allowed a sip of water since her
dinner on Friday, 6th June 2008. Despite being given all the ions and drips,
After having spent 15 days in the University Hospital and seeing that the
doctors were not making any further progress to perk up mum's condition, I
discharged mum on Thursday night the 19th of June 2008. It was slightly
past 10 p.m. when we reached home and mum went straight to her bed. I
could see that mum was still very weak and tired. After unpacking all the
bags and ensuring things have been placed in order I left mum's place and
went home.
ANTICIPATORY GRIEF
The following day when I called to check on mum, it was the maid who
answered all my calls as mum was asleep most of the time when I called in.
I was told by the maid that mum continues to bleed and also, she's throwing
up whatever food or drink that she consumes. When I finally got round to
speaking to mum, I told mum that I would like to bring her back to the
admitted again. I told mum that I would bring her to the private hospital
instead and that too she refuses me! So when my sis came home for the
weekend, I told her to persuade mum to be admitted and my sis too got the
be admitted and finally, mum agreed. On the morning of Saturday, 21st June
2008, we rushed mum to the private hospital where she's already a familiar
sight with the doctor and nurses. We were told by the doctor at the
emergency ward that mum is very dehydrated and very promptly they
treated mum with utmost urgency much to the delight of my mum, my sis
pray, with mum's unbridled love, relief and eventual acceptance will soothe
Here I would like to share the topic of ANTICIPATORY GRIEF which I stumbled
upon whilst scrolling through the internet sourcing for medical help. I
wasn't aware that there is such a thing called "anticipatory grief". The
Anticipatory grief is what happens when you know there will be a loss, but it has not yet occurred.
This is what happens when a loved one is dying, and both the patient and their loved ones have
time to prepare. Anticipatory grief is both the easiest and the hardest kind of grief to experience.
It is marked by “stop and go” signals. With these losses, the handwriting is on the wall... but it
doesn’t make coping with it easier.
Because you have time to prepare, you can begin to envision and rehearse your life without the
person who is dying. This gift of time offers the opportunity to resolve any regrets you may have
with or about your loved one. You can take this time to make amends with your loved one, and to
tell him or her how you feel about them. Your loved one can do the same with you, and other
family members. You can let go of anger or guilt. You also have the chance for delicate
conversations about such sensitive topics as death, end of life wishes, and after-death
preparation. You also have an opportunity to get information about your family.
One obvious drawback to anticipatory grief is witnessing your loved one’s struggle with death. As
the loved one’s condition worsens, you may grieve with each downturn. You may experience
feeling a sense of helplessness as your loved one fights for life. You may feel as if you are living
with a pit in your stomach that won’t go away as you await death’s arrival. In addition, sometimes
when people are facing death, their own fear, pain, or anger may make their personality seem to
change from Dr. Jekyll to Mr. Hyde overnight or even from one moment to the next. In my own
case, when cancer ravaged my mother’s brain, she became psychotic and for a time didn’t know
me. This was devastating to me. Thank goodness, her behavior did not last until the end of her
life, and she regained her normal personality. But for some families, the ones we love continue to
have behavioral changes as they face the end of life. This can be challenging, and healthcare
professionals such as hospice workers or counselors may be able to help.
Perhaps the most difficult challenge with anticipatory grief is that it is difficult to tolerate living in a
state of emergency for an extended period of time. The mind can only tolerate so much angst.
When a loved one is dying, the “emergency” and angst period may seem to last forever. You do
not want your loved one’s death to come more quickly, yet your mind may not be able to handle
any prolongation. Your mind may blank out self-protectively.
But eventually, a reminder or a new episode with the loved one sets off the grief again. Here,
intense grief comes in waves alternating with times of numbness. These “stop and go” signals
allow you to shut down emotionally. This insulates you before the next event occurs. Then, your
grief begins anew. These flat periods can be looked at as natural, normal, and welcome respite
from the agony of the loss. They do not mean you are cold or uncaring.
Anticipatory grief is normal. It is an important part of coping with a loved one’s extended illness. It
prepares both you and your loved one for the end of life. Unfortunately, it may also be an
emotional roller coaster. If you can expect that and understand that, you can help yourself cope
with it. Don’t feel guilty about anything you may be feeling. Instead, make the best out of each
moment you can spend with your loved one, and focus on the positives, such as forgiveness,
settling affairs, and helping your loved one make plans for their passing.
brother to keep an eye on mum especially where her meals are concerned
and should there be a need for any emergency, he's able to give mum
taking care of their grandma. They would have the cable station tune to the
melodies of those golden oldies which mum enjoyed listening to and mum
would then eventually fall asleep on the couch! Mum would alternate
staying with my brother and returning to her own home. Nothing beats
staying in your very own house and sleeping on your very own bed mum
would say. All these shuttling between mum's own home and my brother's
each time she wakes up, she needed a few minutes to orient herself as to
her counts on her red blood cell, haemoglobin and platelet continues to drop
lower and lower. The duty of having to send mum for her weekly check ups
was being shared between my brother and I since my sister works outside of
the country, it is not feasible and practical having her to return home ever
so often.
Soon, I found myself being sapped off of whatever energy I had left. The
during this time that I decided to take a month off from work on a no-pay
basis to spend more time with mum and to attend to all her needs.
while being at home. The nurses from the private hospital taught me how
and I had to learn the steps before they are comfortable in discharging mum
from the hospital. You see, when mum was admitted for dehydration,
bottles and bottles of sodium chloride with glucose were being administered
her strength, mum then asked to be discharged. But the doctor was
radiologist to implant into mum's left arm a catheter leaving the openings
how to apply the drips and soon my brother and I became experts at it!
Then when mum went for her check-up at the private hospital, the doctor
was pleased with the job so far and jokingly I asked him to graduate me with
Vacations and all other outside activities disappeared. During the times
when I was taking care of mum, mum and I endured an array of emotions.
It is not easy taking care of a sick person and especially when it is your
loved one and someone who's very close to your heart. Mum displayed
have a nourishing meal, she begs for hawker stuffs like, curry laksa, assam
laksa, nasi lemak, cendol and the list goes on. I then remembered what all
the doctors advised me, that is, to please give mum whatever she yearns for. Let her
enjoy the balance days of her life to the fullest. With that in mind, I drove mum (she
asked to come along) to get her assam laksa, to get her cendol, to get her
My guilt was enormous seeing mum indulging in this kind of food stuff but
on the other hand, I was glad that I managed to let mum have a satisfying
At times I felt so hurt when mum would reject my help and keeps on
In between her napping times, mum would tell me stories of bygone days.
those happier days came flashing in and I started thinking about my dad.
Some how we all have the tendency to reflect back occasionally to those
On mum's insistence, I finally went back to work. Not a day goes by without
all doing everything we can for mum? Have we all taken the right direction?
sending her for her weekly blood and platelet transfusions. We then worked
out a plan in that prior to her appointment date until she finishes her
where the government hospital is. I then arranged for a taxi to carry mum
to and fro the house and hospital. The plan was very well received by all
and things looked promising on the first and second day. However, in the
early hours of Thursday the 21st of August 2008, mum trip and fell when
returning to her bed from the toilet. Mum sustained injury to her left eye
and was bleeding profusely from above the eye brow and its surrounding
area. The maids together with my aunt, hurriedly applied ice cold packs
and the bleeding subsequently stop. Mum hid this from me and I only knew
Then as usual, when 8 a.m. arrived for her appointment to take the blood
transfusion, mum kept to the schedule and proceeded to the hospital with
that purplish blue/black eye. Mum had the presence of mind to request for
an x-ray of her skull to see whether there were any cracks. Fortunately the
result came back negatively. When I asked why wasn't an MRI done and the
therefore the need doesn't arise. However, mum requested that she be
taken off from all those transfusions of blood and platelet as she felt she has
had enough of all these and it's time to let her go. Upon hearing this, the
doctor again summoned for family members to come by. My brother and I
immediately went and we were counseled by the doctor from the palliative
care centre. Obviously we told the doctor not to abide mum's request but
Early morning on Friday the 22nd of August 2008, mum called me at work to
say that she's vomiting blood. I in turn rang my brother to check on mum.
When my brother saw how weak mum was, he immediately rang for the
how severe her condition was, my heart started to race at a fast pace and
my legs felt numb. Deep down inside me I knew mum's race was soon to be
over.
Mum kept calling out to me and repeating the words, "I'm going to … "
However, regrettably, that sentence was never completed and mum then
hematologist told us that nothing else can be done for mum anymore. It's
just a matter of time now. An MRI of her brain showed that she's
hemorrhaging in the brain and to think that it was only the day before when
the hematologist told me that mum displayed no symptom of such and thus
With quivering lips, I made that dreadful phone call to my sister to return
rest of the family members and relatives to inform them of mum's critical
condition and they all came to soothe mum and offered mum words of
Although mum could no longer open her eyes or talk, subconsciously she
could comprehend what was being said to her as tears were seen streaming
from her eyes. In fact, mum could even wriggle her toes when we tickled
her feet.
Sadness overwhelmed each one of us as we watch mum slip away bit by bit
and we begin the agonizing journey of letting go. I kept telling myself that
this isn't happening. Surely there is some mistake. Maybe things can still
get better. I felt responsible for mum being in this condition and muttered
to myself that I should have got the ambulance to send mum to the private
hospital instead. Perhaps with their expertise and efficiency, mum could be
I spent Friday night in the hospital with mum. For the past two years
whenever mum was admitted to the hospital, never had I spent a night in
the hospital with mum. But somehow, for this particular Friday night the
22nd of August 2008, I decided otherwise. Throughout the night, mum had
fever but the medical officer on duty daren't prescribe any medication to
bring the fever down for fear that she might worsen the situation. So on
lonely and empty in that cold ward. By early next morning when I tried to
lift mum up to change her diaper and clothing, I noticed how frail, listless
and helpless mum was. Upon a closer look, I noticed blood was trickling out
from one of her nostril and also, mum no longer respond when I tickled her
feet. When the hematologist checked on mum, he said that such is the
scenario and the only thing he could do now is to transfuse mum with
else is being done for mum. I was quite doubtful whether that was a wise
deprived mum of any care and attention. I then spoke to mum, not knowing
home. Shockingly all of a sudden mum gave out a loud grunt! Respecting
mum home and oxygen tanks were ordered and placed readily in her
Mum reached home around 4 p.m. (or thereabout). Her breathing became
very erratic. At times it would just stop momentarily. My brother and his
family, my sister, my aunts and friends were all with mum during this
preparing for her final departure from this earth. No matter how unwilling
I remember mum telling me repeatedly that I have to learn to let her go and
be strong to envision my life without her. I would then tell mum that I will
let her go when the time comes. It is easy for others to tell you but how
does one come to term in allowing this to happen to the one most dear and
heavy heart, I told mum that I am now prepared to let her go and assured
her that I will be strong to face the days ahead. This last special moment
will ALWAYS be remembered. Then at about 7:19 p.m. on Saturday the 23rd
I know that one day mum would leave me and I thought I was prepared for
the eventuality but how wrong I was. Oh how much I miss her. It's such an
dearest mum especially when during these past two years our connection as
mother and daughter grew dearer and richer. Loosing mum is so painful. I
will of course cherish those wonderful moments we had together and I hope
Mum, you have fought a good fight, you have finished the course, you
have kept the faith – 2 Tim 4:7
The journey of life may not be the way you want it to be always. God,
please grant me the serenity to accept the things I cannot change.
Courage to change the things I can and the wisdom to know the
difference.
HAPPY BIRTHDAY MUM
LETTER TO MUM
Dear Mum,
57 days ago, I sat by your side and wept while I said farewell to you. You
know, that was the hardest thing of all – letting you go. It hurts, mum. I still
can't believe that you're no longer around for me to talk to, for me to
confide my problems to, for me to share news of joy or news of the latest
happenings around the world. I miss hearing your stories on the happening
scene of your friends and relatives who would only confide in you with their
problems. I miss teasing you and running my fingers through those fine snowy
white hairs of yours. I miss running errands for you. You have left a gaping
hole in my life mum.
Mum, I know your illness has sapped you off whatever energy you had left
and I can understand why you kept telling me to let you go. I know you have
always emphasized to me to be strong and to learn how to carry on my life
without you. I know that death is a fact of life and when that happens, I can't
do anything to change that. People around me tell me that it's alright to cry
and grieve and with each passing day, the hurt becomes lesser and lesser.
But that doesn't mean that I will forget and stop missing you. Well, mum, I'm
trying very hard to be strong and to continue living my life without you but,
you can rest assure that my love for you will never die. I will always cherish
those wonderful moments we had together and remember the fun times we
had together.
Mum, it's been raining practically everyday since you left this earthly world.
The sky is weeping alongside with me. I'm devoid of your love and guidance.
Mum, you brought us up very well and your children have been the centre of
admiration by your church members as well as by your sisters and brothers.
I, together with my brother and my sister, are very proud and fortunate to
have a mum like you. Everyone we meet have the most nicest things to say
about you and in their own ways, they miss you too. You've done a very good
job and now it's time for you to take that much awaited rest in the home of
your Father. Deep down inside me, I could sense that you're very happy and
at ease without anymore pain or sufferings. Knowing how happy you are
makes me happy too.
Today, we, your children together with your brother and sister and sister-in-
law and your favorite nephew (or rather, 'God-son'), remembering how much
you meant to us, visited you at the columbarium to celebrate your birthday.
A birthday which you had made plans with your brothers and sisters but
unfortunately, with time running against you, it is such a disappointment the
plan could not materialize. Mum, did you see the sumptuous spread prepared
by your son, my brother? I hope you had enjoyed them all as much as we had
thereafter. We are truly blessed to have a brother who can cook so well!
QUOTE:
In the bible, King Solomon wrote that there is a season in our lives. So true
it is. A time to love, a time to laugh and a time to cry. A time to be born, a
time to die, a time to heal, a time to mourn and a time to dance, etc, etc.
God's timing is always right. Whatever we go through in life, whether happy
or sad, there is a purpose....and though many a times we cannot understand
but when we reflect back, we may one day understand.