Tuesday, October 8, 2013

Chronicles of C.K.Heng (words by Cindy Heng)

"It's been 3 wks since I posted about Dad's hospitalization. Thank u for all the well wishes & prayers of healing & encouragement to us. Visitors are met with stories & pics of a man who faced chemo n radiation at an old age, battled heart failure n kidney infection within the last decade. Despite the uphill journey, he's produced sculptures, cooked up a storm, was there for family & friends. What a life...what a man. He's my dad He's still filled with life n beating the odds!" -shared Cindy Heng (All commentary and quotes here via)
"Dad as a young man on the cusp of a artistic career. Surrounded here by sculptures from Indonesia, his birthplace."
"A proud moment standing by a self-portrait bust, here on exhibition at Teochew Building. The last piece of 7 items he made within 5 years."
"Constantly teased, my Dad lucked out by getting the fairest maiden in their circles, my mom. Here his spirit is strong as he shares a wide knowledge on fish at the River Safari. He loves animals n my cat Mao is so attached to him."
"Dad loves China, and we brought him to see the Pandas a few days before his brain radiation was to begin. Now he has it with him to sleep every night..."
FYI: All photos here are to be compiled into a book about the life of my dad, as requested by him, when he was still speaking and relatively healthier. Images / photographs of which, has been by my dad's bedside since his stay at Singapore General Hospital until now at the Assisi Hospice, for folks who are interested to see his life "before" … this is not a book for sale, and given to select folks he had chosen or asked to give to ... this would be my one and only task to complete as soon as possible.

Thursday, October 3, 2013

"Call me if you need anything"

Friends often say "Call me if you need anything!".

Well, it could mean a few things, like needing a shoulder to cry on, a sympathetic ear. Or just plain supportive courtesy. But if you have an intention to physically help out, listed here are a few specific things friends and folks can consider offering, for folks in dire situations.

With everything that was transpiring, household chores were all put on hold. Without a benefit of a maid, floors remained uncleaned and dishes lasted an entire day until they were washed at the end of the vigil every night from whomever went home instead of staying over at the hospital, accompanying dad.

One aspect that needs attention, is the family laundry. An offering of washing and drying might be one of the more practical tasks to help.

Our family washing machine had actually gone kaput a couple of days before dad was admitted to the hospital. And in the midst of dad being in the ward for the first week, we had to go buy a washing machine, and as well arrange for someone to be at home when it was delivered.

With the possibility of my mobile phone being cut off, I had to make a detour one day to the AXS machine to pay my phone bill. As I was one of the main caregivers listed for dad (alongside my sister), every phone call might possibly be important.

And just over the weekend I had gone to queue up pay for the HDB bill.

Utility bills and other household essentials might need time tending to, and an offer of help might be appreciated. Work out the moneys needed, if that makes you more comfortable, in lieu of paying for it yourselves first.

Same can be said for household groceries, for food or even topping up of toilet paper. Although the likelihood of "cooking" at dire times might be a stretch, other household amenities need to be considered.

Either they are bought for, or physical help is offered to help wheel a trolley back with a family member, or even a weekend car ride back from the grocers.

Is one of the key requirements, but this is volatile as "timing" is constantly flexible. The only person that drives in the Heng Family, is my brother, who lives physically away from us (dad, mum, sis and me). And while he might send us home at nights, he is also not our private chauffeur, able to bring us about at any time of the day.

So far, we have been cabbing it. Imagine each trip to SGH would be around SGD$17 to SGD$28+ - depending on time of day (ERPs etc), so to and fro could be around SGD$50+ per trip. Now imagine that daily, x 3 persons.

But understandably, an offer of transport is not a truly feasible option to offer, but perhaps a day when multiple things are happening, like paying bills, going grocery shopping etc.

Nevertheless, we thank everyone for their offer of "help", in whatever form they take :)

From Hospital to Hospice

In the midst of the chaos what was our first week in SGH Ward 46, we were contacted by and met with a social worker representing the National Cancer Center (NCC), who were to advice us on the next step for dad's care, which was to be moved to a "hospice", to spend the remainder of his days on this mortal world.

The way it works is, the NCC will liaise with the chosen hospice/establishment (within NCC's selection), to arrange for bedding availability, and even ambulance transport, as well as medical requirements - such as pain management etc - once the patient is brought over to said hospice/establishment.

And via this arrangement between NCC and chosen hospice/establishment, we would get to enjoy the government subsidies afforded, as well as payment via Medisave, partial or otherwise.

Based on our simple criteria (I had asked for a location closer to us in Pasir Ris), a hospice/hospital was chosen, and apparently applied for, without further confirmation from us.

So I was with surprise that I received a call from the hospice/establishment a day after I had a chat with the social worker, and was told dad was to be moved on the fourth day since he had been warded.

We were all frankly dumbfounded, as the speed was overwhelmingly fast, but most importantly, we were not told of the application, and had not even had a chance to tell dad. Heck, we were still in dire worry about dad's condition!

But seems the hospital felt dad was able to be transported.

We had delayed the move to a Friday, while both myself and my brother sped to the chosen hospice for a recce trip - we needed to see where it was that dad was to go stay!

(Ironically, I was here at the first location, years ago filming
in one of the ward/rooms, for a Chinese television series…)

The difference between a "hospice" and an "old folk's home", was that the later housed anyone that came thru it's doors, whereas a hospice - in this instance offering "Palliative Care" - only focused on "advanced terminally ill" folks, folks who have been given (estimated) "3 months of life". In a hospice there will be nurses and perhaps even doctor(s), but their main concern, is "pain management".

Different locales offer different prices provide different needs for the patient as well. Some Daily Room costs do not include items like diapers. Some locales offer visitation leeways. Some locales also offer addition amenities like "rehabilitation therapy", "music theraphy" etc. At the end of the day, it was "how much?" and "what can they do to help my dad feel more comfortable?".

By the end of the first week, we turned down the move to the first hospice chosen, and had gone intead to recce two other hospice (on the NCC list), and finally decided on one, and informed the relevant folks about it.

And we have been waiting since - for availability at our chosen hospice - and this coming Friday (tomorrow), would be the end of the second week of waiting.

Monday, September 30, 2013

September 16th - 22nd, 2013

"3 weeks to 3 months".

That was how long our dad's time on this mortal world was estimated to be, as mentioned by the doctors from the National Cancer Center at Singapore General Hospital.

The radiology treatment for the cancer cells in his head had stopped.
The chemotherapy for his prostate cancer had stopped.
Neither treatments seem necessary for our father - as recommended by the doctors - as his condition had been determined to be beyond "saving". His condition is terminal, and we were in constant fear of loosing him, at any given time.

The first week in SGH Block 4, Ward 26, was extremely hard and excruciatingly trying. We were all bracing for the worse. Friends and relations paraded thru, to mixed emotions of recognition, tears and abject dislike.

Dad's condition was in random flux, flitting in and out of consciousness. Lucid times were greeted with smiles and tears, for dear friends and closer relations. Dad could still say 'welcome' at times too!

Breaks my heat tho, to see mum explaining to each friend who comes visit, dad's condition, constantly (re)opening a wound ... But seeing dad smile, means the world.

Dad could not speak fully, but for random bouts of coherent short sentences, or single words, all in Mandarin. There have been numerous words mentioned and repeated. Dad has said "sorry" to everyone of us (The Heng Family) individually at at varied times.

There was even a period where devils and demons were suspect (but that will remain unspoken at this time). There is a whole other "religious" context that happened, which I will mention at another time another post. perhaps...

Dad was in constant pain - CONSTANT - quelled with constant administrations of morphine. He could articulate "Ow" leading to multiple "ow-ow-ow"-s indicating "pain". Often his pain lead to him contorting his entire body, look braced for impact. Heart-wrenching grimaces and eyes wide and glared.

His currently only mobile limb, is his right arm and hand/wrist, which has seen constant shaking (to indicate pain), to "pointing" straight up at the ceiling (fingers not straighten). His right hand is truly strong too, constantly gripping hard at our hands when we hold his. And there were constant times when he gripped at mum's hand to maneuver to his mouth, and bite down. It nearly happened to me one time too, but I held my hand steady … but it was like Extreme Arm-Wrestling.

He would be up all night in constant pain.

Ironically and frustratingly, most times when (pain management) doctors did their daily morning rounds and come by dad's bedside and ask "how is your pain, Mr Heng?", the pain suddenly does not manifest itself. And our pleas of "he is in pain!" seemed suspect, like children in anxiousness … until such my sister took mobile phone videos of dad's condition at night, when she stays over by his side.

His eye balls were perpetually turned up to the direction of his forehead, but I/we think dad could "hear" pretty decent, unable to reply succinctly though.

Dad had been placed on a "D.I.L." (aka "Dangerously Ill List") at the beginning of the week = a condition whereby there are no restrictions on the number of visitors, at any time. ("Regular" visitations are restricted to 4 individuals at any time, during specific visiting hours).

Family members were encouraged to stay by dad's side throughout the night, regardless of visiting hours. The nurses were exceedingly helpful in providing blankets and pillows, and even suggested how to align a trio of chairs, so as to enable a make-shift "bed" for folks staying over-night. Those were dark days indeed.

We "survived" Week One, and as of this post, have just entered the first day of Week Three.

Sunday, September 22, 2013

September 10 - 15th, 2013

Dad's Radiology sessions begin, with ten consecutive sessions to be had, daily (excluding weekends). Day One Monday saw us heading to Basement One Radiology with dad using a walking stick, walking to and fro the taxi, while I wheelchaired him when we reached Singapore General Hospital.

They offer wheelchairs at the entrance lobbies, and we only had to let the front desk scan our identification cards. Once we are done for the day and left the hospital, the wheelchair will be tracked as returned.

Each session took less than 15 minutes, while the waiting times might well be longer! Dad was chatty, but visibly tired, although he was still full of spirit then. Essentially, scheduled was 5 days of Radiology, followeed by a weekend break, then subsequently 5 more straight days of Radiology. We were informed that there would be a doctor briefing us at the beginning of the 10 days and subsequently another consult with the doctor. By Day Five, no one met us to brief us, so we were all self-medicating and deduced that the doctor might meet us on the 6th session, and perhaps subsequently the last session, to advice us on the effectiveness of the treatment.

Let me say this: DO NOT SELF-MEDICATE and assume the actions or lack of actions. ASK direct if need be, ask for the reasons. i know first hand how the lack of knowledge would render a person ineffective, even of the doctors ask in return; "Do you have any further questions?" ... How to ask what, if we do not know what to ask in the first place? should we have had an earlier assessment done on day five instead of waiting for day six, with two days gap over the weekend?

I have always maintained since the beginning of this journey, "if you don't freak out, then i don't need to freak out." - the "YOU" being the doctor(s) - and have since learnt this is a naive assumption.

I will save my anger for another post.

Day Two Tuesday, saw a visible change. Dad felt he was tired and using the sole walking stick was not stable for him, so we switched to the 4-legged walker, which provided him further stability. Again, it was used from home to taxi, and taxi to home, while wheelchair was in effect at the hospital grounds.

Day Three Wednesday continued with the 4-legged walker, but dad was complaining further lack of strength to hold himself up.

By Day Four Thursday, we were using a (loaned) wheelchair from home to taxi, throughout the hospital grounds, and taxi to home. A comfortable and suitable wheelchair is so important., as I have since learnt, but more on that in another post ... Dad could still manage the 4-legged walker at home, but his physical abilities waned drastically.

He relied on one hand to eat, while we were at the hospital canteen, food spilling down haphazardly, and me forgetting to get him a bib. His speech was also softening but not slurred.

By Day Five Friday, his ability to get himself in and out of the taxi, saw me lifting his whole body weight in and out of wheelchair, and even going to the toilet became a chore. By the evening (our sessions had all been around lunch time), dad was sitting slanted, could hardly stand up with the 4-legged walker, while we held the pee bottle to him, unlike earlier in the week. Dad had became increasing tired and unable to move much, having his meals by where he sat, instead of at the dining table.

By midnight, mum had woken me up from sleep, saying she needed help carrying dad up fopr him to pee. It was then we took shifts, whereby mum stayed till 3am, while I woke up from 3 and stayed with him till the morning.

it was a rough morning. In a span of a week, dad had gone from chatty and responsive individual with independent mobility, to whispers of "toilet" and "pain", and me needing to carry him to the toilet to take a dump at 5am in the morning, where he no longer could even have the strength to wipe his own bum.

Throughout the week, the water retention affected his legs and bloated it to an alarming degree. We had seen this prior, and it had been a constant problem leading to massive discomfort and lack of energy. The weight of it all also dragged dad to a shuffle, and hardly any strength to navigate his feet, the left of which became numb and eventually immobile, where he could not even lift it without exerting himself, which no doubt led to further exhaustion.

By Saturday night, he agreed to be taken to the Accident and Emergency department of Singapore General Hospital, and needed to be held by 4 nurses (one of which was a huge male) from taxi unto a stretcher, and into the waiting ward.

Sometime in, a nurse came out and said dad was asking for my sister (by then then whole Heng Family was there, mum, myself and my brother and sister). She went in, and came out saying dad had been screaming for "help" for some time, but no one answered him, and then he asked for my sister urgently - because while he was being yanked out of the taxi, his shorts were pulled so uncomfortably, they were not pulled back into place while he was lying and waiting, and he needed reprieve to twist back his shorts for further comfort.

My father was subsequently warded in SGH, but speech became a challenge. The cancer cells and water retention is his brains had by then devastated my dad. In fact, that was the last time dad could articulate what he needed and wanted.

Wednesday, September 18, 2013

Pain Management

A lot has transpired since my last entry. And has transpired speedily, for which I will not relate for now, as time is excessively short now, for us to spend with our dad. This will be a quick update, I will not update any further beyond this for the time being, and spend my days with my family with my father instead. Thank you for understanding.

The only physical recourse now for my father, is pain management. The cancer cells attacking his brains have left him incapacitated physically and in a severely diminished mental state. But I believe dad can still hear us, but has extreme difficulty in expressing himself, beyond short sentences and words, and very rarely often. I do not know how long that would last, but we will cherish each and every moment he speaks now.

His pain is getting more and more frequent, and is constantly on painkillers, which further clouds his mind and awareness.

We can only hope for dad to be in comfort and less pain, whatever it takes.

His friends have been visiting him, which gives him big smiles (when he recognizes them) and tears of anguish if he could not articulate what he had wanted to say to them ... and my heart breaks every single time my mum has to update every single person about dad's condition, reliving her pain over her husband over and over and over and over again. I breakdown every time I attempt to tell dad's situation myself, so my respect (and concern) for mum has gained a thousand fold, over her strength we have seen in previous years.

Radiology has since stopped. Chemotheraphy has stopped. The Doctors have said no more treatments are needed, as his condition is beyond that now. We are actively seeking options for when he discharges, it he discharges strong, for which we/i am in fear he might not. We have been taking turns to stay by his side, since he had been warded.

Thank you all for your prayers and support.


Monday, September 9, 2013

Radiology Day One

(Us waiting at the treatment department)

We had just returned from our first Radiology session today at Singapore General Hospital (SGH), which took all of ten minutes (or less) for the procedure to complete, after a mini meeting and clarification with a staff earlier about said procedure, and about an hour's wait due the breakdown of the machine - for which we (both dad and i) stuffed our faces with coffee, tea, half-boiled eggs, toast and french toast AKA "second breakfast".

And while I do not have the medical term for the procedure to share here (yet), it is essentially where lasers are shot into my dad's brain, to kill cancer cells - which were found last weekend, when we checked him into A&E and subsequently warded.

This is in addition to his Prostate Cancer, which we had discovered over a year ago.

One thing which scares me/us, was the sheer "speed" in which his current brain cancer cells are being treated.

- Warded on Saturday evening.
- Next day Sunday morning CT-scan. Diagnosis suspected immediately communicated to us.
- Following Monday confirmation, and meeting and treatment scheduled for the following Monday set.
- Monday afternoon, I accompanied my dad to meet Radiology doctor to talk about procedure and sign consent forms.
- Went for Radiology pre-check out and briefing on Thursday. Including making/molding the head-brace.
- Following Monday (today), spent slightly over 10 minutes having the procedure done.

Now, THAT is a quick turnaround time! Fastest we've ever encountered here at SGH or any other medical situation we have been thru. Which of course certainly freaked me out, and we had enquired whether this was a "life-threatening" situation that demanded immediate attention, or was it a "early-treated would be better", to which the answer was the latter.

Side effects range from vomiting, hair-loss and eventual loss of memory, and when I mentioned "dementia", the answer was thoroughly noncommittal, so we are mentally trying to prepare for the worse outcome and not be too generous with the result.

Or as I mentioned to dad today, as we were on our way home after the treatment, we'll worry about the memory impairment when the time comes, now we just enjoy our life as much as we can.

Day One down, nine more days of consecutive sessions to go. weekdays, not including weekends.

Come to think of it, if dad had not fallen on saturday morning, and we did not send him to A&E, we might have discovered this much later, like when we did his Prostate Cancer, which was already Stage 4 when diagnosed.

The image shown above is of the head brace, where it was heated and loosened, and melded over dad's head and hardened when cooled. Dad mentioned he was fitted with it, and it was a tight fit (it was hard for him to even take a swallow), meant to keep his head steady while the lasers do their work.

Dad had mentioned he was made to sit up in a raised seat for the procedure, and that h's head was fixed into the headrest, although he could not know what keep him there (and all I could think of was Arnie in "Total Recall").

As an added reminder for subsequent medical officers, a "Fall Precaution" sticker was added in his appointment card, for reference.

So folks in the same situation should consider the patient's physical capacity, and if he/she had need to take any medical supplements for the procedure specific. Dad was to take "steroid pills" to prevent water retention in the brain.