26th July
2012 (Day 1 at Hospital No.3)
This was my first ever
experience of getting a loved one admitted at a Hospital, I was clueless as to
how these things work. I did not know one has to do so much paperwork and then
‘wait’ to be allotted a bed and a room.
We were asked to wait
for about an hour in the Waiting Area of the OPD Section and during that
waiting period, hell broke loose on ‘us’, my Mother went to the OPD Washroom to
defecate and then a the Toilet attendant came running to me (Mom would have
described her what I was wearing etc.) and told me my mom is in trouble and she
is calling out for me. I rushed inside the Washroom and she showed me the pot
filled with blood. I called up N-3 and she asked me to get a Wheelchair and
rush my mother to Emergency and she will call up the Reception and the
Emergency Room. I did as the Doctor instructed, with my heart pounding away. I
had never seen my Mom on a wheelchair, leave aside having seen her on a
Hospital bed in an Emergency Room (ER).
My mother called me
over to her as she laid on that Bed in the ER and took a promise from me that
come what may, I will not cry, so I decided to be strong and hide my tears and
fears from her. It was easier said that done.
I just kept listening
to the Doctors, N-3 now told me that, since my mother had lost so much blood
through her rectal region, before conducting any other tests or Bone Marrow
biopsy (which was the reason I had brought her over to Hospital No. 3 that day)
their team of Doctors now needs to monitor her or keep her under observation in
the Medical ICU (MICU) over the next 24 hours and identify the reason for the
Rectal bleeding and if need be, they will give her a blood transfusion as well
to compensate for the blood loss as in any case she was anemic because of her
kidneys not functioning well lately.
It all made sense to me
and I agreed to my mother being shifted to the MICU at Hospital No.3. MICU was
this big ward with about 8 beds, separated by these green-colored curtains and
each bed having a lot of life support machines and IV Stands placed next to it.
They also did an Ultrasound (USG) of the Abdomen.
That night, 1 unit of
PRBC was transfused.
She was not being
allowed to eat anything though and was being given Glucose through an
Intravenous route (I/V as the medicos say).
She was feeling
terribly hungry is what I remember but the Doctors didn’t allow her to consume
solid food.
I was only allowed to
meet her during the MICU Meeting Hours which were for 1 hour in the morning and
1 hour in the Evening, or whenever my mom asked for me, they would call out for
me from the Attendant’s Lounge which had Recliners or chairs for Attendants
(whose patients are in MICU or ICU) to
sleep on…I thought that night that perhaps the experience of travelling alone
and being on my own to so many different countries and cities, staying in
hostels and travelling on a new route every day over the past two months helped
prepare me for this lonely and haunting night in the Attendant’s Lounge. There
was no running away, I had to live with it, and muster courage to overcome my
fears and uncertainty.
I did not know what to
expect from the next day, all I could do was keep the faith and pray myself to
sleep that night.
Medical
Notes from that day 26th July 2012:
Quoting
the Hospital’s Discharge summary, this is what they admitted my mother for: “56
year old female presented with the complaint of one episode of passing large
amount of frank blood per rectum after having pain in abdomen on 26.7.12 in OPD
Toilet. She was immediately put on wheelchair and taken to Emergency Room. She
was found to be tachycardiac, hypotensive and pale. She was fluid resuscitated
and shifted to MICU. There is no history of similar medical episode in her
past. On investigation, she was found to be anemic and 1Unit PRBC was also
transfused. Her vitals were carefully monitored”
27th July
2012 (Day 2 at Hospital No.3)
I got up many times the
previous night, then as the sun rose, I got up, anxiously waiting for the clock
to strike 10am so that I could go and see Mom at the MICU. There was just one
Toilet (not even a washroom) attached to the Attendant’s Lounge. I took an old
mineral water bottle and taking water in it from the washbasin, had a bath and
refreshed myself that morning to gear up for another day in the Hospital.
A Nurse from the MICU
came calling out for me, I panicked and ran…MICU was at the other end of the
log corridor. I barged the door open, and was relieved to see Mummy up and
awake, she had just been given a sponge bath by the Nurse and was looking
better than the day before. She was about to have Tea and sandwich, which she
had forcefully asked the Hospital staff for, as she was feeling terribly
hungry. As soon as she saw me, the first question she asked me was whether or
not I had food, last night and this morning? I nodded and told her that I did
have my meals in the Cafeteria downstairs. It was only after hearing that did
she start sipping her Tea. She told me she passed black coloured stools that
morning, I later learned black coloured stools are because of stale blood (from
yesterday) and these black stools are termed ‘Melena’. As per what I
read over the Internet, “Melena refers to dark black, tarry stools that are
associated with Upper Gastrointestinal Bleeding”.
I was asked to leave the
MICU after a while by the Hospital staff.
I moved outside and
kept standing in the area facing the MICU Door, hoping to meet the Doctors
attending to my mother and asking them the way forward. No one came. And then I
interacted with an Uncle-Aunty (they must be in their late 50s), they asked me
how was I related to my patient inside the MICU, I told them, “she is my
mother”, I asked who were they tending to, Uncle replied, “my father is
inside”. I asked them what’s wrong with their father, Uncle disgustingly
replied, “when we got him to the Hospital, a week back, he was just having cold
and fever; now every possible organ in his body has gone wrong, he has slipped
into Coma, they are calling the Neurosurgeon today, they keep asking us to get
one expensive medicine after the other, but are not letting us see our patient;
we don’t even know what they are giving to him and doing to him; so my advice
to you is to keep an eye on everything that they are giving to your mother,
don’t take things for granted here, Be vigilant, ask questions”, I nodded in my
stunned state after having heard all that.
I thought to myself,
“was meeting this Uncle my destiny? Was it God’s way of communicating with me
at that hour, as I too was all alone in the Hospital, there was no one I could
speak to over the phone on this, no elder besides me, no family member, no
cousin, the only person I was speaking to was my brother, who was 3 years
younger to me and who was at home, managing work, home and our pets”
Then in the afternoon,
I was called inside by the Nurse to sign a Consent form to allow attest named
“Sigmoidoscopy” to be performed on my Mom by the hospital’s Gastroenterologist,
whom I will hereafter refer to as GI-1. They also gave me an Information
leaflet alongside the Consent form, which explained what the procedure was all
about and the steps involved; as I read it, I told my mother about the
procedure as well and briefed her that they will soon be giving her a solution
called PEGLAC. She said they had just given a 1 liter solution to her in a
bottle and she had consumed 75% of it, she said pointing to the Bottle beside
her on the table. She also said she was feeling uneasy ever since and they had
told her that they will soon give her 1 more bottle of the solution.
I interrogated the
staff as to why did they not ask me before giving Mom that 1 litre of PEGLAC, I
assertively told them that “they are wrong in taking my consent for a test
whose procedure they had already started”, as I was saying all this my mother’s
health deteriorated, she started feeling nauseated, vomited and contracted a
severe bout of Diarrhea, she kept rushing to the Toilet every few minutes, she
was exhausted. I made my disgruntlement clear to the Doctors and the MICU
Staff. The plan to conduct Sigmoidoscopy was dropped by GI-1 for that day and
instead I was asked by N-3 if the Hematologist, whom I will now onwards refer
to as H-1 should conduct ‘Bone Marrow Biopsy and Aspiration’ to identify the
reason behind the presence of ‘Kappa light chains’ in Mom’s SPEP Test, the very
reason I had got Mom admitted for. I gave my consent for it and the Tests were
performed by H-1’s subordinate, later that night, N-3 broke the news to me,
that ‘My mom has Multiple Myeloma, a form of Blood Cancer’. Upon me asking
her on treatment for this disease, she also told me a tentative line of
treatment that Mummy would be put on beginning tomorrow, which included a 4 day
course of 40mg of Dexamethasone (Injection under the brand name of ‘Dexona’) to
be administered to her on each of the days.
The Nephrology Team at
Hospital no. 3 had also reviewed my mom’s Renal Biopsy Slides (Renal Biopsy was
performed by N-2 and N-1 at Hospital No.2) and concluded that the slides showed
‘chronic interstitial nephritis and the tubules were free of myeloma casts’.
Those were the days of
poor 2G speed phone Internet and I tried to log onto the Internet over my phone
the whole of that night trying to understand what the disease was and I
prepared a set of questions, doubts if I can say so to ask of both N-3 and H-1
the next morning.
As it was about to be
midnight, again a Nurse from the MICU Called out for me in the Attendant’s
Lounge, she said “your mom is asking for you”. As I went to meet Mummy, she
showed me her bruised arms and complained that a Doctor in the MICU had tried
to take out her blood samples thrice and failed, she was crying and telling her
to stop her from doing so. My mom is mentally, a very strong individual; to see
her breaking down that way was painful for me, but that meant that I, mincing
no words, told the MICU Staff to not touch my mother without my consent
hereafter, the Nurse-in charge got infuriated and she told me that I should
write this down on a piece of paper so that they can show it to the MICU Duty
Doctor in case they ask any of them to perform a procedure on my mom. I wrote
it all very clearly and signed that piece of paper. I then reassured Mummy that
they will not do anything to you in my absence.
I left the MICU as I
was asked to by the staff in there. A few minutes later, the nurse came again
saying the MICU Duty Doctor wants to meet me, I went to meet him and repeated
our concerns, I told him that I will not let the previous Doctor who had
pricked Mom thrice to collect her blood sample to perform any procedure on her.
I also told him that I will not let my mom’s arms be pricked again as they are
anyways so bruised that she is crying in pain.
This MICU Duty Doctor
then began his exercise of terrifying me further by saying that, “your mom’s
bones are leaching calcium and her blood has started to thicken up and that is
the reason, my colleague was having troubles drawing out blood from her body
for blood sample analysis”. I was adamant, come what may, I will not allow my
mom’s blood to be withdrawn through another painful piercing done on the veins
of her arms. The MICU Duty Doctor then assured me that he will perform the
procedure, gently, from mom’s inner thigh area. I spoke to my mom about it and
we both agreed to let him do so. The procedure was performed and mom did not
experience any pain during it. I thanked the doctor and went back to my chair
in the Attendants’ lounge, picking up my diary again to scribble those
questions I had planned to ask the Doctors next day on mummy’s ailment and line
of treatment.
28th July
2012 (Day 3 at Hospital No.3)
So much had happened in
the previous two days. Soon after I saw the Doctors arriving that morning in
the Hospital, I rushed to personally request H-1 not to use the term “blood
cancer” in front of my mother, I requested him to allow me to “break the news
to her instead” and pissed off H-1 told me, “No No, it is our duty to tell the
patient the truth, we can’t hide it from her”. I felt disgusted thinking to
myself that if ‘truth’ was of such paramount significance to these Doctors then
the previous day should not have been such a torrid one for Mummy and me.
I understood that H-1
will indeed use this term in front of my mother, this is the Doctor’s way of
building up fear psychosis in patients and their caretakers, and it is an ugly
tactic that most medics resort to these days. I rushed to meet Mom and gently
told her that, the name of the disease she was suffering from has been
diagnosed and it is called Multiple Myeloma and some may refer to it as a type
of Blood Cancer and that she should not panic if H-1 or any of the doctors
tries to scare her using this term ‘cancer’. I also added on that it is a ‘slow
progressing ailment which can be treated, as I had done some reading on it last
night’.
My assumption was true,
for indeed H-1 and N-3 who accompanied him kept harping on the word ‘cancer’ in
front of Mummy that morning. Soon H-1 left and then I went and told N-3 that I
had some questions to ask of her regarding the medication they are planning,
sheepishly she told me that I can ask those questions off her. She did answer
those questions of mine, some satisfactorily and some unsatisfactorily and then
went off telling me sternly, “you should not be reading up on the Internet so
much”…I didn’t answer her back for I knew she was irritated by my questions. So
be it, I thought and went back to Mom’s bedside.
Post the Doctor’s visit
that morning, I was told that GI-1 had to perform Sigmoidoscopy on my mom to
identify the cause of rectal bleeding. They were unable to perform the
procedure the previous day as my mom’s bowel had turned irritable following the
PEGLAC they made her drink. Again, I assertively told the doctors that I will
not allow my Mom to be given that PEGLAC Solution for clearing her stomach, all
over again, so it would be better if they could think of an alternate way to
clear her bowel. The Doctors soon got back to me saying that they would
administer ‘Enema’ instead and then GI-1 will perform the procedure. I gave my
consent for it. As per what I read over the Internet, “Enema refers to a
fluid being injected into the lower bowel by way of the rectum for bowel
cleansing before a medical examination or procedure”.
I was later informed
that “a solitary rectal ulcer was detected through sigmoidoscopy and tissue
biopsies were also taken, the results of which are awaited”. On reading up the
internet again, I made my own interpretation of the finding of the
Sigmoidoscopy performed on her and it was that perhaps Mom had a “Solitary
Rectal Ulcer”, which burst under the stress she was experiencing while waiting
in the OPD area the other day when I brought her over to get her admitted at
Hospital No. 3; it was the stress-induced bursting of that Solitary Rectal
ulcer that had called the rectal bleeding in that OPD Toilet!
I asked N-3 as to when
will they shift my Mother to a private ward, she was no longer in need of
intensive care so they should shift her out of the MICU now! She nodded and
told me they will ask the staff to do so as soon as the room became available.
29th July
2012 (Day 4 at Hospital No.3)
In the morning, under
N-3 and H-1’s instructions, my mother was administered 40mg of Dexamethasone
(Injection under the brand name of ‘Dexona’) through I/V or Intravenous route.
It was only towards the evening that day, that I was told that a private ward
is now available and they are shifting my mother in it. I was thrilled as for
the first time in two months I could now hug Mom and be with her uninterrupted.
I need to mention here
that on Day 2 under the guidance of the person who had done my Mom and ours
Medical Insurance, I had also filled up the form and done the formalities for
us availing of the ‘Mediclaim’ for this period of Hospital stay and also marked
down my preference of the ward that we intended to have. Much like Hotels,
these hospitals also have various categories of Private Rooms one can opt for
depending on the luxury being sought!
The other good news of
the day was that my mom’s Creatinine levels had begun to drop implying
Dexamethasone administration had helped clear the clogged tubules in mom’s
kidneys.
30th July,
31st July 2012 and 1st August 2012 (Day 5-7 at Hospital
No.3)
These
days passed by smoothly. A full body skeletal survey was performed on Mummy on
30th July 2012. I share below the snapshots from the Discharge
summary that was given to us on 1st August 2012 as we made our way
back home.
On 1st
August 2012, H-1 came to meet us in our Hospital Room and the first question he
asked us was, “how much medical insurance cover does your Mom have?” It was
only later that we learnt why do Doctors ask that, because once they know the
figure you have insured yourself for, they know this much amount you can fleece
the patient off. Mummy answered that question of his and he asked us to report
to Oncology Day Care at Hospital No. 3 next week and we said we would.
I was also taught to check
Mom’s Random Blood Sugar (RBS) Levels and administer Insulin doses on my
mother’s stomach by the Dietitian that day after she briefed us on the diet
that we need to follow for Mom.
My mother’s
blood reports from 26th July 2012 till 1st August 2012
The summary of medical procedures performed by Doctors at Hospital No. 3 during 26th July-1st August 2012, and their key findings, are summarized below:
The medicines to be
given to Mummy and instructions with regard to her diet that we received from
Hospital No. 3 on Mom’s discharge from there are shared below. Please note here
that Inj. Engerix B vaccine (that you see mentioned below) is the name of the
Hepatitis B Vaccination that Mummy was taking as per a 4-vaccine schedule and
Calcirol was the name of the Vitamin D supplement that she was advised to take:
Once back home on 1st
August 2012, Mummy was overjoyed; 2nd August 2012 was
“Rakshabandhan” festival and we celebrated it well.
However, the
over-exertion and over-excitement took a toll on Mom’s health the next day and
Mummy reported high fever in spurts from 3rd till 6th
August 2012, which used to subside after I used to give her a cold compress
with bandages dipped in chilled water. On the advice of N-3 to whom I was
reporting her daily RBS levels and health over telephonic smses, mummy was put
on an antibiotic course of Augmentin 625 and Ciplox 500 mg (both
tablets, twice daily) for 5 days and Crocin tablets on an SOS basis.
On 6th
August 2012, we visited the Oncology Day Care Unit at Hospital No.3 to start
Mummy’s treatment for Multiple Myeloma under the supervision of H-1; but our
experience that day was torrid, the whole atmosphere in that Day Care Unit was
designed to build up the anxiety levels of patients and their caretakers, there
were patients all around, some on the bed, some on recliners, there were
different rates for opting for the bed or the recliner, there was suffering all
over, from young and bald 7 year old child to young newly married man with
testicular cancer to old people, it was painful, heart-breaking; we completed
the paper work and opted for a recliner. A nurse came and checked my mother’s
Blood Pressure, it was low at 90/60, the sister informed the Doctor H-1, he got
the Nurse to put her on a Saline Drip right there on the Recliner, they checked
the BP again after a while, it was the same. H-1 now insisted that this was
serious and I should get Mummy admitted in the Hospital again, “as low BP will
lead to sepsis etc., oral antibiotics would not be enough and IV Administration
is a must!” We said we won’t and we actually ran away, “discharged on request
on our own risk”, as Hospital No. 3 termed it.
On 7th
August, 2012, we visited Hospital No. 3 again and met another
Gastroenterologist, we named GI-2, for a review of the Rectal Biopsy report we
had just collected from the Hospital, the report suspected Rectal Tuberculosis
and GI-2 asked Mom to take AKT-4 tablets daily without fail every day as she
woke up. These were big fat tablets and needless to say, Mom hated it all, but she often joked, that "I went to the Hospital seemingly fine and came back home with Cancer, Ulcer, TB"!
