Upload
ilene-ong
View
226
Download
0
Embed Size (px)
Citation preview
8/9/2019 My Journey With Mum & MDS
1/54
MY JOURNEY WITH MUM AND MDS
8/9/2019 My Journey With Mum & MDS
2/54
In loving memory of my beloved mum,
ROSE LIM SWEE KEOK(18th October 1933 23rd August 2008)
by
Ilene OngIlene Ong
Isaiah 54:10
"Though the mountains be shaken and the hills be removed,
Yet my unfailing love for you will not be shaken
Nor my covenant of peace be removed,
Says the Lord, who has compassion on you."
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 thisJournalmay beused, 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. Theinformation 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 thisJournal.
I disclaim any and all liability for injury or other damages that could result from use of the information obtained from thisJournal.*For purpose of definition in this disclaimer clause, "My Journey with Mum and MDS"is referred to as the "Journal" in this context.
Ilene Ong Siew Hwa
8/9/2019 My Journey With Mum & MDS
3/54
MUM'S FIRST HEALTH SCREENING
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
routine health screening at one of the esteem private hospital in Selangor
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
profile which is not as comprehensive as the health screening carried out by
the hospital. So little did we realize that this simple routine check up would
soon create mayhem in our life.
Shortly thereafter, the result of my sister's profile was received by us minus
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
began to ponder as to the delay in getting them. Soon, I was consumed
with anxiety and so on 5th May 2006 I called to enquire on the results of
mum's screening. My call was transferred by the doctor in attendance and
referred to an oncologist in respect of my mum's blood profile results.
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
come in personally to pick up the results.
8/9/2019 My Journey With Mum & MDS
4/54
Hurriedly, I raced myself towards the hospital to seek clarifications and was
given the run about as the consultant physician revealed that the blood
results indicates some abnormality and in order not to deliver a wrong
diagnosis has requested that more tests be carried out on my mum.
Subsequently, an appointment to see the oncologist was fixed for 13th May
2006. I had my reservations in sending mum to the oncologist so I
approached the oncologist first for verification. Undoubtedly the oncologist
asked that mum be referred to the hematologist instead and so an
appointment was scheduled for 10th May 2006 with the hematologist.
This being my first encounter, I wasn't sure which hematologist to choose
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
hematologist would be invariable for the next couple of years.
Prior to seeing the hematologist, mum had to do a complete blood count
test and the evaluation will be made known to us when we see the
hematologist. A complete blood count is a procedure in which blood is
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
cells, white blood cells and platelets are counted.
Below is a chart reflecting the components of the complete blood count.
Components of the Complete Blood Count (CBC)
2005 American Association for Clinical Chemistry 1 Downloaded from Lab Tests Online(http://www.labtestsonline.org)
TEST NAME MEASURING USE INCREASED/DECREAS
http://www.labtestsonline.org/http://www.labtestsonline.org/8/9/2019 My Journey With Mum & MDS
5/54
DWBC White Blood Cell Total number
of WBCsper volume ofblood (sumof all types ofWBCs)
The body uses WBCsto fight infection.Each type has aslightly different job.
WBC is measuredtomake sure there
are a sufficientnumber and tohelp detect andmonitor conditionsthat lead toincreases ordecreases in totalWBCs, and/or toincreases inone ormore types ofWBCs.
May be increased withinfections,inflammation, cancer,leukemia; decreasedwith some
medications (such asmethotrexate), someautoimmuneconditions, somesevere infections,bone marrow failure,and congenitalmarrow aplasia(marrow doesn'tdevelop normally).
%Neutrophil
Neutrophil/Band/Seg
Measures thepercentage ofeach of 5types ofWBC,compared tototal WBCcount
This is a dynamicpopulation that variessomewhat from day today depending onwhat is going on in thbody. Significantincreases in particulartypes are associatedwith differenttemporary/acuteand/or chronicconditions. Anexample of this is theincreased number oflymphocytes seen witlymphocytic leukemiaFor more informationsee Blood Smear andWBC.
% Lymphs Lymphocyte
% Mono Monocyte% Eos Eosinophil% Baso Basophil
Neutrophil Neutrophil/Band/Seg
Measures theactualnumber ofeach type ofWBC pervolume ofblood.
Lymphs LymphocyteMono Monocyte
Eos EosinophilBaso Basophil
RBC Red Blood Cell Total numberof RBCs pervolume ofblood.
Primarilymeasured todetect decreasedproduction,increased loss, orincreaseddestruction ofRBCs, to detectanemia andsometimes to helpdetect
erythrocytosis (toomany RBCs).
Decreased withanemia; increasedwhen too many madeand with fluid loss dueto diarrhea,dehydration, burns.
Hgb Hemoglobin Total amountof oxygencarryingprotein insideRBCs
Mirrors RBC results.
Hct Hematocrit Percentage of blood volumemade up ofRBCs (solidversus liquidportion ofblood).
Mirrors RBC results.
MCV MeanCorpuscular
Average sizeof RBCs.
The size of RBCsand the average
Increased with B12and Folate deficiency,
8/9/2019 My Journey With Mum & MDS
6/54
Volume amount of hemoglobin insidethem can helpclassify differenttypes of anemia.
decreased with irondeficiency andthalassemia.
MCH MeanCorpuscularHemoglobin
Averageamount(weight) of
hemoglobininside eachRBC.
Mirrors MCV results.
MCHC MeanCorpuscularHemoglobinConcentration
Averageconcentration(%) ofhemoglobininside eachRBC.
May be decreasedwhen MCV isdecreased, increaseslimited to amount ofHgb that will fit insidea RBC.
RDW RBC DistributionWidth
Measuresvariation insize of RBCs.Most normal
RBCs are thesame size.
Help classifyanemia.
Increased RDWindicates mixedpopulation of RBCs,immature RBCs tend
to be larger.
Platelet Platelet Total numberof plateletsper volume ofblood.Platelets arespecial cellfragmentsthat areimportant inbloodclotting.
Determine whethernumber is adequateto control bleeding.
Decreased orincreased withconditions that affectplatelet production;decreased whengreater numbers usedas with bleeding;decreased with someinherited disorders(such as Wiskott-Aldrich, Bernard-
Soulier), with Systemilupus erythematosus,pernicious anemia,hypersplenism (spleentakes too many out ofcirculation), Leukemiaand chemotherapy.
MPV Mean PlateletVolume
Average sizeof platelets
Help evaluatedecreased platelets.
Vary with plateletproduction; youngerplatelets are largerthan older ones.
8/9/2019 My Journey With Mum & MDS
7/54
FIRST VISIT TO THE HEMATOLOGIST
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.
The waiting to be called into the hematologist room suddenly became an
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
air-conditioning or was it because of our nervousness.
8/9/2019 My Journey With Mum & MDS
8/54
"Madam ..............you may go in now. Ah, finally, I said, it's our turn after
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
anymore as how I have often visualize them to be. I suppose this is to
differentiate them from the medical officers.
Fortunately the temperature in the room was to our liking but the
atmosphere was tensed. The hematologist looked at the results of 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
facilitate him to do a general physical examination on mum to look out for
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.
8/9/2019 My Journey With Mum & MDS
9/54
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
her to be admitted the very same day so that he could do a thorough
investigation. He didn't reveal on the degree of mum's illness but instead
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
hesitant to be subjected to such test. I then explained to mum the need in
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
for mum thereafter.
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
8/9/2019 My Journey With Mum & MDS
10/54
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
could finish our meal.
BONE MARROW ASPIRATION
Upon our return to the private hospital, I was taught the routine of checking
in a patient. This being my first, I was unsure as to the hospital's
requirements and the facilities available. I had difficulty in the selection of
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
being mum, she saw my predicament and prompted me to go for the
cheaper one, of course.
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
8/9/2019 My Journey With Mum & MDS
11/54
do we hear mum complaining that she's not feeling well and therefore there
was no need for any sort of hospitalization until now.
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
glasses being brought out.
Bone marrow aspiration (extracted from MedlinePlus)A small amount of bone marrow is removed during a bone marrow aspiration. The procedure is
uncomfortable, but can be tolerated by both children and adults. The marrow can be studied to
determine the cause of anemia, the presence of leukemia or other malignancy, or the presence of some
"storage diseases" in which abnormal metabolic products are stored in certain bone marrow cells
8/9/2019 My Journey With Mum & MDS
12/54
The above illustration is taken from the web page of MedlinePlus
Blood and bone marrow tests are used to detect and diagnose
myelodysplastic syndromes ("MDS") and periodic bone marrow exams are
often carried out over time to determine if MDS has progressed. The patient
reclines on either their stomach or the side, whichever position is most
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
piece of bone for examination under a microscope to look for abnormal
8/9/2019 My Journey With Mum & MDS
13/54
cells. It is common for patients to experience a twinge of pain when the
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
on my mind. Disobediently, I sat quietly on the chair next to her bedside
and started to text to my sister and brother on mum's condition.
Later that night, the doctor came by and advised that two pints of blood
would be transfused for mum and barring any unforeseen circumstances,
mum should be able to go home the next day.
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
results would reveal at our next appointment.
8/9/2019 My Journey With Mum & MDS
14/54
MUM'S SECOND APPOINTMENT
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,
the hematologist broke the news to us saying that mum is confirmed
suffering from MYELODYSPLASTIC SYNDROME. In short, it's often
referred to asMDS - Myelodysplastic (myelo-bone marrow, dysplastic-
abnormal growth).
MYELODYSPLASTIC SYNDROME
8/9/2019 My Journey With Mum & MDS
15/54
MDS is a group of diseases in which the production of blood cells by the
bone marrow is disrupted. The bone marrow in myelodysplastic syndrome
is typically more active than normal and yet the number of blood cells in the
circulation is reduced. This is because most of the cells being produced in
the bone marrow are defective and are destroyed before they leave the
bone marrow to enter the blood stream. The hallmark of the
myelodysplastic syndrome is the combination of a hyperactive marrow with
low blood cell counts. A reduction in numbers of all types of blood cell is
called pancytopaenia. The other common feature of the myelodysplastic
syndrome is abnormality in the appearance of the bone marrow and blood
cells. The myelodysplastic syndromes are difficult to treat because of the
unusual combination of hyperactive marrow but inadequate blood cell
8/9/2019 My Journey With Mum & MDS
16/54
production. The only treatment considered potentially curative is a donor
stem cell transplant in younger and fitter patients. Unfortunately my mum
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
women. The median age at diagnosis is between 65 and 75 years, over
90% of patients are over 50 years at the time of diagnosis. Some doctors
classify MDS as a form of cancer and term it as pre-leukemia as the
abnormal bone marrow cells eventually progress into acute myeloid
leukemia. There are five types of myelodysplastic syndrome. These are:
Refractory anaemia ("RA")
Refractory anaemia with ring sideroblasts ("RARS")
Refractory anaemia with excess blasts ("RAEB")
Refractory anaemia with excess blasts in transformation ("RAEB-t")
Chronic myelomonocytic leukaemia ("CMML")
The following are being explained in detail as this is the progress my mum is
heading towards.
REFRACTORY ANAEMIA (RA)
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
8/9/2019 My Journey With Mum & MDS
17/54
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.
RA accounts for about 30-45% of cases. About 10% of cases of RA will
transform to acute leukemia. Some patients with RA survive well in excess
of five or even ten years, but the average survival ranges from two to five
years.
REFRACTORY ANAEMIA WITH EXCESS BLASTS (RAEB)
In this form there is an increase in precursor blood cells (called blasts) in the
marrow. Normal bone marrow contains up to about 5% blast cells.
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
about 15% of cases and has a median survival of about a year.
About 40% of patients with RAEB will go on to develop acute leukemia.
REFRACTORY ANAEMIA WITH EXCESS BLASTS IN TRANSFORMATION (RAEB-t)
8/9/2019 My Journey With Mum & MDS
18/54
The findings in these patients are similar to those in RAEB but with a higher
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
be classified as having acute myeloid leukemia. The rate of conversion to
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
stem cell transplantation, produces prolonged survival in some cases.
CHRONIC MYELOMONCYTIC LEUKAEMIA (CMML)
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
contain an increased proportion of blast cells. There may be anemia and/or
low platelets.
CMML is considered to be a form of myelodysplastic syndrome because the
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
myeloproliferative disorders. The new WHO classification moves CMML into
a separate category called the Myelodysplastic/Myeloproliferative Disorders.
8/9/2019 My Journey With Mum & MDS
19/54
CMML accounts for approximately 15% of myelodysplastic syndromes.
Transformation of CMML to acute leukemia happens in a similar way to
other forms of myelodysplastic syndrome. Median survival is of the order of
12-18 months. Between 15-30% of patients progress to acute leukaemia.
My mum showed no signs or symptoms and was diagnosed by chance as a
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
shortness of breath even on light exertion. In about 80% of patients this is
simple anemia, whilst about 20% present with infections or bleeding which
my mum is now suffering from it. Infections are usually either bacterial
pneumonia or skin or throat abscesses.
Not all patients will receive active treatment straight away because in most
cases there is no evidence that early treatment influences overall survival
duration. Patients who are not starting treatment will have regular check-
ups. This is often referred to as watch-and-wait.
The only treatment approach considered to be potentially curative is a
donor stem cell transplant or chemotherapy. Unfortunately due to my
mum's age, this form of treatment cannot be initiated. Thus blood
transfusions were her only option.
8/9/2019 My Journey With Mum & MDS
20/54
The myelodysplastic syndromes are chronic disorders mainly affecting older
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
for evidence of disease progression or of transformation to acute myeloid
leukemia.
The treatment for a high proportion of patients is supportive care which has
few or no side effects. If patients receive large numbers of blood
transfusions there is a danger that they may accumulate dangerously high
levels of iron. MDS is a puzzling, life threatening set of disorders for which
there are no easy cures or quick remedies.
RESEARCH
Upon this shocking discovery, naturally the internet was my source of help.
I needed to get as much information as possible and from as many sources
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
gain the appropriate information but reading the abundance articles by
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.
The reports were incomprehensible to a normal non-medical person like me.
8/9/2019 My Journey With Mum & MDS
21/54
They were so technical. The medical dictionaries from the web sites
became my virtual consultants.
8/9/2019 My Journey With Mum & MDS
22/54
COMPLICATIONS
In view of her MDS condition, over time, mum soon developed other
complications like very low white cells and declining platelet counts and she
became susceptible to infections and was treated with antibiotics and
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.
At one point, the doctor concluded by saying that my mum's
management is problematic in view of increased susceptibility to
infection, immune thrombocytopenia plus worsening MDS status
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
entourage consisting of my sister, my brother and his family, my cousin and
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.
Mum's haemoglobin count drifted downwards and was given blood
transfusion. The hematologist did another bone marrow aspiration and the
results showed her MDS status has worsened but he managed to maintain
mum by introducing steroid (prednisolone 30mg daily). This was to be
8/9/2019 My Journey With Mum & MDS
23/54
mum's longest stay in the hospital thus far. The entire clan of friends and
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
that I will never forget.
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
full of medications being prescribed both orally as well as by way of
intravenous. She was discharged only on 11th March followed by check ups
on 17th and 24th March.
In a span of one year, mum had undergone 2 bone marrow procedures, an
endoscope, and endless amount of blood and platelet transfusions and not
forgetting the dozens of medication that she has consumed orally and also
the drugs administered via intravenous. I drew up a chart to record the
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
8/9/2019 My Journey With Mum & MDS
24/54
amount spent at each out patient consultation and admission. Mum too
kept a record of her own.
Over time, I managed to learn and understand my mum's condition better
and appreciated the treatment given to my mum by the hematologist at the
private hospital.
The private hospital where my mum was admitted to soon became my
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 powerfuland 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
felt it pointless to inform the relatives anymore.
The sentence that the hematologist concluded that, my mum's condition is
problematic plus worsening MDS status, kept ringing at the back of my
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.
8/9/2019 My Journey With Mum & MDS
25/54
LOOKING AT ALTERNATIVES
On the recommendation of the hematologist here, together with my sister,
we sought a second opinion from a hematologist at the Singapore General
Hospital and was given an appointment for the 2nd April 2007.
My brother on the other hand sought help from Chinese physicians. We
were all so desperate looking for a cure for mum. Relatives and friends
willingly came forward to guide us and advised us in addition to the advice
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
alternative treatments and some tried to convince mum to switch religion.
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
disagrees and so does my brother. Each time I brought up the subject of
the maid, my conversation which started off very well would soon lead to
confrontation and hurt feelings.
When your loved ones fall ill, suddenly your entire routine lifestyle changes
overnight as in my case. Since my mum was diagnosed with MDS in May
2006, my entire routine lifestyle became so unmanageable. Life for me now
8/9/2019 My Journey With Mum & MDS
26/54
is full of uncertainty. I could no longer make any plans ahead for fear of
having to rush my mum to the hospital any time. These days, faced with
such uncertainties, my mind and body have undergone turmoil which I
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
to regain control of myself to stay focus. However, I am still trying my level
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
soon meet her. It is heart wrenching to witness my mum being debilitated
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
has to revert to seeking treatment from one of the government hospitals as
it has gone beyond our means to pay for the exorbitant bills of the private
hospital. As much as we would love to grant mum the comfort of a private
hospital which, undoubtedly offers more personalized attention, we have to
face the reality that money doesn't grow on trees!
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
8/9/2019 My Journey With Mum & MDS
27/54
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,
in terms of comfort, where do we go? Private or government? In terms of
treatment, do we have faith in the government hospitals? Not forgetting too
that the response time is not as expeditious as that of a private sector! We
just have to tolerate and endure the system run by the government
hospital. We shouldn't be complaining as we need not have to pay a single
cent towards hospital charges as mum, being a government servant, this is
one of its perks being offered!
TAKING A BREAK
Seeing that mum is more stabilized now, I took mum for a short holiday to
her hometown, Penang. My cousins, together with my sister and my family,
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
8/9/2019 My Journey With Mum & MDS
28/54
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
she's feeling so much better.
After we got home from one of our most joyous and splendid holiday, mum
kept herself busy by shopping at the hypermarkets! That's the way to go
mum!! While it is heart wrenching and exhausting, these are precious
moments to behold and treasure for a lifetime.
SAYING THANK YOU
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
render any assistance of any kind whether it is just a word of comfort or
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
pleasantly surprise and touch I am by all these kind gestures. I do wish to
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
of educating as many people as possible about MDS). THANK YOU ALL SO
VERY MUCH!
8/9/2019 My Journey With Mum & MDS
29/54
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
my mum's health as we continue our battle. If scientifically we can't win
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!
UNDERSTANDING THE ILLNESS
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.
8/9/2019 My Journey With Mum & MDS
30/54
Through this episode, I had mustered enough knowledge to understand
everything relating to blood! I was even praised by the blood bank
personnel for having understood how and what sort of blood, plasma and
platelet were being processed and transfused in one educational sitting as
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.
I was told of mum's condition. Her condition is now classified as Acute
Myeloid Leukemia (AML). AML is a cancer characterized by the rapid
proliferation of abnormal cells which accumulate in the bone marrow and
interfere with the production of abnormal cells. AML is the most common
acute leukemia affecting adults and its incidence increases with age,
however it can also occur in children. It is most prevalent in people in their
8/9/2019 My Journey With Mum & MDS
31/54
60s and older. Actually, this disorder is more common in males than in
females.
The symptoms of AML are caused by replacement of normal bone marrow
with leukemic cells, resulting in a drop in red blood cells, platelets and
normal white blood cells.
The doctor proposed his suggested treatment for mum and recommended
that mum undergo a course of chemotherapy plus the administration of a
drug called myelotarg. Gemtuzumab (myelotarg) is an antibody drug-
targeted chemotherapy. Without treatment mum had only about 3 to 4
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
the CD player played "Millennium Prayers" by Cliff Richard. I was so
overwhelmed by the song that the tears streamed endlessly down my
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
8/9/2019 My Journey With Mum & MDS
32/54
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,
you'll understand how it really feels.
At that time my feelings were mixed with anger, disappointments and
frustrations. Anguish turns to aggression. Anger emerges and I felt
powerless and helpless. That night I started to 'bargain' with God for more
time and miracle. I felt God had abandoned me.
I felt so disappointed and frustrated because after having spent so much
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
followed by fear. I could not accept this to be the conclusion.
SOUL SEARCHING
I needed to know more about this disease and the best treatment strategy
but somehow I just couldn't place things in perspective. This revelation
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
8/9/2019 My Journey With Mum & MDS
33/54
there is some mistake. Maybe things can still get better. Not wanting to
believe and accept what the doctor at the government hospital had
diagnosed, needless to say, I made an appointment on 15th May 2008 to see
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
the answers to prior to seeing the hematologist. So on that appointed day
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
just undergo the chemotherapy first without the consumption of the
myelotarg. Myelotarg could be administered later once the cancer cells
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
reasoning, both mum and I were more comfortable and prepared to
endeavor the chemotherapy.
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
scheduled for 22nd May 2008.
When 22nd May 2008 arrived, eagerly with optimism, both mum and I
approached the hematologist at the government hospital and put forward
8/9/2019 My Journey With Mum & MDS
34/54
our proposal to just carry out the chemo minus the myelotarg. However, all
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.
Oh how my heart sank to the bottom of my stomach and suddenly I felt so
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
unpleasant news to us. I wasn't prepared to accept their explanations and
on mum's intervention, the head hematologist made a telephone call to
mum's hematologist at the private hospital. They spoke at length and
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
side effects outweigh the minimal benefits. As mum is diagnosed as MDS
that have progressed to AML, she would be less responsive to chemo than a
typical case of AML. Complications from chemo may hasten death,
particularly in a person of mum's age.
After a long and arduous journey, the news of mum having no curative
options was very painful to digest. Acceptance and letting go is difficult.
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
8/9/2019 My Journey With Mum & MDS
35/54
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
whatsoever. It then occurred to me that, perhaps due to mum's hearing
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.
Nevertheless, seeing the appalling emotions displayed by me, mum would
have deduced what had transpired.
I felt so hopeless and helpless as there was nothing I could do to persuade
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
blessed, a year or so, was beyond comprehension. Death is imminent. I
was consumed with worry and anxiety while I tried to brace myself for the
impending death and resulting in life changes.
From here onwards, according to the doctors, palliative care seems to be
the best course of action. Mum would continue to receive transfusions of
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
immense dosage of medication for mum to consume to assist in the
maintenance. There is nothing much the doctors can do for mum now and
it is now all up to The Almighty One above.
8/9/2019 My Journey With Mum & MDS
36/54
Coping with this final situation is undoubtedly very difficult. I was
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
palliative care doesn't seem much of a choice to me. Between my sister
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
proven to be effective. Told mum to highlight to the doctor's attention the
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
and not treat.
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
8/9/2019 My Journey With Mum & MDS
37/54
wish to continue further as she is now getting very tired on seeking
treatments to prolong her life span on earth.
MUM'S BAPTISM
5th June 2008, was the next check-up. At this check-up, mums platelets
reading revealed a single digit - 1! Bearing in mind that the minimum
reading of a healthy person for platelet should be 150! So transfusions of
platelet as well as blood were arranged to be given to mum. However,
before arrangements for transfusions could be made, mum started to bleed
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
bed bleeding away! This is the ugly picture of being in a government
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
Christ as her Savior. Knowing how mum aspires to become a Roman
Catholic and in respecting her desires, both my brother and sister gave their
8/9/2019 My Journey With Mum & MDS
38/54
unconditional support. My brother then proceeded to contact my cousins
and aunts who are Christians to help with the baptism arrangements as
neither of us was familiar on the procedures.
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
continues to remain a mystery!
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,
mum complains of having hunger pang!
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
8/9/2019 My Journey With Mum & MDS
39/54
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
hospital as she cannot be vomiting uncontrollably but mum refuses to be
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
same tone of answer. Between my sister and I we persevere to get mum to
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
and I. So much of compassion was displayed by the nurses and doctors
over here as compared to the University Hospital!
8/9/2019 My Journey With Mum & MDS
40/54
Seeing mum in pain causes me pain. The journey of letting go is agonizing.
I must embrace and express negative emotions as well as positive one. I
pray, with mum's unbridled love, relief and eventual acceptance will soothe
my heart and soul, help me cope and eventually heal me.
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
description befits exactly what I am enduring currently.
WHAT IS ANTICIPATORY GRIEF?By Beth Erickson, Ph.D.
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
doesnt 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 ones struggle with death. As
the loved ones 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 wont go away as you await deaths 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 mothers brain, she became psychotic and for a time didnt 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.
http://www.strengthforcaring.com/author/beth-erickson/http://www.strengthforcaring.com/author/beth-erickson/8/9/2019 My Journey With Mum & MDS
41/54
When a loved one is dying, the emergency and angst period may seem to last forever. You do
not want your loved ones 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, yourgrief 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 ones 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. Dont 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.
CARING FOR MUM
Mum then moved to stay with my brother as it would be easier for my
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
immediate attention. Even my niece and nephew soon became experts at
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
place and sometimes my aunt's place soon created confusions to mum as
each time she wakes up, she needed a few minutes to orient herself as to
where she's waking up from!
8/9/2019 My Journey With Mum & MDS
42/54
Mum now needs to take her blood and platelet transfusions every week as
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
tiredness was overwhelming. My back started to hurt badly too. It was
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.
Between my brother and I, we had to do the drips procedure onto mum
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
to mum plus the intervention of neutralities and vitamins. As she gained
her strength, mum then asked to be discharged. But the doctor was
hesitant as mum still needs to be continually on the sodium chloride and
glucose intravenous. So what the hematologist did was, he asked the
radiologist to implant into mum's left arm a catheter leaving the openings
for easy administration by non-medical people like me.
8/9/2019 My Journey With Mum & MDS
43/54
As mum was staying with my brother periodically, I had to teach my brother
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
a nursing certificate and that brought a smile to mum's tired face.
I moved down to Klang to stay with my mum. Caregiving became my life.
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
resistance towards the change in her diet. As much as I wanted mum to
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
sugar cane water etc..
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
meal which, much to my delight, pleases mum very much.
At times I felt so hurt when mum would reject my help and keeps on
pestering me to return to the office. All I wanted to do during these times is
8/9/2019 My Journey With Mum & MDS
44/54
simply spend time with my mum such as going out to eat or just walking
about the shopping malls.
In between her napping times, mum would tell me stories of bygone days.
Whilst mum reminiscences, I held onto my emotions tightly as images of
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
wonderful moments and I hope to be able to pass down such tales to my
daughter one fine day.
On mum's insistence, I finally went back to work. Not a day goes by without
me calling mum to check on her. I did question myself as to whether we are
all doing everything we can for mum? Have we all taken the right direction?
Mum being mum, she felt very uncomfortable in troubling us children in
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
transfusions, mum would stay at my aunt's place which is very nearby to
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
8/9/2019 My Journey With Mum & MDS
45/54
and the bleeding subsequently stop. Mum hid this from me and I only knew
of it when my aunt called to tell me the next day.
LAST FEW HOURS
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
hematologist says that mum showed no signs of internal bleeding and
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
instead to continue with the regimen. Despondently, mum lost her
argument on this point.
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
ambulance to send mum back to the government hospital whilst I rushed
8/9/2019 My Journey With Mum & MDS
46/54
from my place of work. When I saw mum at the trauma room and seeing
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
lost consciousness. Forlornly, the medical officer, neurosurgeon and
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
there was no necessity to carry out an MRI of the brain!
With quivering lips, I made that dreadful phone call to my sister to return
home immediately. Then, together with my brother, we started calling the
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
comfort and encouragement and prayers. Oh how we prayed for a miracle
to happen. Miracles do happen? I remembered someone once told me that
and also, I read it from somewhere too.
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
8/9/2019 My Journey With Mum & MDS
47/54
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 myselfthat
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 myselfthat I should have got the ambulance to send mum to the private
hospital instead. Perhaps with their expertise and efficiency, mum could be
spared from this situation.
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
half-hourly intermission, I applied cold packs onto mum's forehead. I felt so
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
platelet with the view to stop the bleeding.
8/9/2019 My Journey With Mum & MDS
48/54
My sister then proposed that mum be brought home seeing that nothing
else is being done for mum. I was quite doubtful whether that was a wise
choice. I didn't want to be living a life of regret knowing that I have
deprived mum of any care and attention. I then spoke to mum, not knowing
whether she can hear me or not, to give me an indication if she wants to go
home. Shockingly all of a sudden mum gave out a loud grunt! Respecting
her wish to return home, an ambulance was subsequently arranged to ferry
mum home and oxygen tanks were ordered and placed readily in her
bedroom back home.
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
difficult time. It is so heart wrenching to see mum in this condition
preparing for her final departure from this earth. No matter how unwilling
we were, we still have to let mum go.
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
nearest to your heart?
8/9/2019 My Journey With Mum & MDS
49/54
Each one of us took time to express our love for mum and, eventually with a
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
of August 2008, mum inhaled her last breath.
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
aching loss. There is definitely no way to make up for the loss of my
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
these memories will provide comfort in my days ahead.
Mum, you have fought a good fight, you have finished the course, you
have kept the faith 2 Tim 4:7
TO THOSE I LOVED AND THOSE WHO LOVED ME
When I am gone, release me and let me go,
I have so many things to see and do.
8/9/2019 My Journey With Mum & MDS
50/54
You mustn't tie yourself to me with tears
Be happy for these precious years.
I gave to you my love, you can only guess,
How much you gave to me in happiness
I thank you for the love you each have shownBut now it's time I traveled on alone.
So grieve a while for me, if grieve you must
It's only for a while that we must part
So bless the memories within your heart
I won't be far away, for life goes on
So if you need me, call and I will come
Though you can't see me or touch me, I'll be near
And if you listen with your heart, you'll hear
All of my love around you soft and clear
And then, when you must come this way alone
I'll greet you with a smile and say, "welcome home".
8/9/2019 My Journey With Mum & MDS
51/54
LEGACY OF LOVE
A wife, a mother, a grandma too
This is the legacy we have from you
You taught us love and how to shareYou gave us strength, you gave us might
A stronger person would be hard to find
And in your heart, you were always kind
You showed us love in one way or another
Not just as a wife not just as a mother
For all of us you gave your best
Now the time has come for you to rest
So go in peace, you've earned your sleep
Your love in our hearts we'll eternally keep
OUR MEMORIES ARE OUR KEEPSAKESOUR MEMORIES ARE OUR KEEPSAKES
TO WHICH WE'LL NEVER PARTTO WHICH WE'LL NEVER PART
GOD HAS YOU IN HIS KEEPINGGOD HAS YOU IN HIS KEEPING
WE HAVE YOU IN OUR HEARTSWE HAVE YOU IN OUR HEARTS
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.
8/9/2019 My Journey With Mum & MDS
52/54
Courage to change the things I can and the wisdom to know the
difference.
8/9/2019 My Journey With Mum & MDS
53/54
HAPPY BIRTHDAY MUM
S A T U R D A Y , O C T O B E R 1 8 , 2 0 0 8
LETTER TO MUM
Dear Mum,
57 days ago, I sat by your side and wept while I said farewell to you. Youknow, 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 toconfide my problems to, for me to share news of joy or news of the latesthappenings around the world. I miss hearing your stories on the happeningscene of your friends and relatives who would only confide in you with theirproblems. I miss teasing you and running my fingers through those fine snowywhite hairs of yours. I miss running errands for you. You have left a gapinghole in my life mum.
Mum, I know your illness has sapped you off whatever energy you had leftand I can understand why you kept telling me to let you go. I know you havealways emphasized to me to be strong and to learn how to carry on my lifewithout 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 cryand 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'mtrying 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 cherishthose wonderful moments we had together and remember the fun times wehad 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 ofadmiration 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 tohave a mum like you. Everyone we meet have the most nicest things to sayabout 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 ofyour Father. Deep down inside me, I could sense that you're very happy andat ease without anymore pain or sufferings. Knowing how happy you aremakes me happy too.
8/9/2019 My Journey With Mum & MDS
54/54
Today, we, your children together with your brother and sister and sister-in-law and your favorite nephew (or rather, 'God-son'), remembering how muchyou meant to us, visited you at the columbarium to celebrate your birthday.A birthday which you had made plans with your brothers and sisters butunfortunately, with time running against you, it is such a disappointment theplan 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 hadthereafter. We are truly blessed to have a brother who can cook so well!
HAPPY 75th BIRTHDAY MUM!
Love you always,From your daughter who is still trying very hard to be strong!
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, atime 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 understandbut when we reflect back, we may one day understand.