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.

Wednesday, September 4, 2013

Stage Four

Dad has cancer.

We had known about it over a year ago - shortly after celebrating Chinese New Year - a result of yet another intense bed-ridden malady which led to the discovery of his Prostate Cancer. By the time it was identified, the prognosis was that he was at Stage Four, because the cells had already touched the bone. No, it is not a benign tumor.

There is no cure. There is no sunshine after the rain. All we can do now, is to ensure a decent "Quality of Life" for him, and that everything goes smooth and as painless as possible.

Before diagnosis and confirmation of his cancer, there were no specific symptoms to warn us, until his bladder problems, which had him hospitalized and warded in ICU, and us seeing our dad at his weakest. But as soon the operation to resolve his bladder problems was completed, other maladies began manifesting.

Things turned drastic when the cells affected his back, and he could literally not stand nor sleep for a long duration of time, without being in severe pain, for which we underwent radiology first, which 'solved' his back issues.

At that point he was on a wheelchair, and i remember that was then when i forgo using my own walking cane, as it would have been ridiculous trying to push dad on a wheelchair, and hold unto a stick at the same time LOL

Time came when a new doctor checked dad's blood out and saw an incredulous spike in his PSA readings, which then prompted the need for chemotherapy sessions.

("PSA" = Prostate-specific antigen, also known as gamma-seminoprotein)

After his 4th session, dad fell sick in a hard way, a reaction to the chemo had left him in severe discomfort and unable to move, and had intense diarrhea, and yet again hospitalized. Primary diagnosis was water had entered his lungs.

After 9 days of being warded, dad came back home, and it was the first time i had seen dad with uncontrollable tears of anguish. Those were dark times.

"Funnily", all these "milestones" ran parallel to when friends from overseas visited Singapore (Aaron and Jess from AOS), with the above being a snap of dad and the guys, at their show "Fang to Fur" in June, and immediately after that, things went downhill speedily. I had since missed all their activities when they were in Singapore, as i had been with dad.

Dad has just finished his 6th session of chemotherapy about 2 weeks ago, currently "taking a break" before starting on his 7th thru to 10th chemo session (Dad's session is once every 3 weeks), since his last two PSA index readings showed a "plateau" in results. A "standard" length of chemo is 10 cycles, apparently, with the person's health an indication of whether he or she is able to withstand the procedure.

Side effects ranged from diminishing of palate and taste-sensation, and loss of strength in limbs and is constantly tired. But dad has not puked, unlike other patients we have seen (first time we had chemo, the young dude by our side was hurling painfully, and loud, scared me to hell tho!), but perhaps it is still the early stages of chemo - which ironically when we first discovered his cancer condition, the doctor then had explained to us that dad was "too old" to undergo chemo.

But for a while, things were under control. Dad even had even bought himself a snazzy hat, to combat the fear of hair-loss due to chemo (which he is less concerned about these days, actually). Dad had been going out to meet friends for coffee and chats, of course not for too long a time out. I had also accompanied dad to visit the TCM Doctor (Traditional Chinese Medicine), and was generally living a decent semblance of a 'life', besides his constant tiredness, and extremely disturbing bloated stomach and legs.

"Water Retention" is an extremely dangerous thing to be had, and can pretty much screw up your body in more severe ways you might not have imagined.

Only on weekends, when the rest of the family was at home, dare I venture out of the house, for example; to visit the Sunday Flea Market at CSC - as long as there's someone else at home, who could cater to dad's needs.

Things took a dire turn, when dad slipped down from the bed Saturday morning August 31st, just hours before the start of the annual Singapore Toy, Games and Comic Convention, barely hours ago when i was still preparing for. We spent the next morning-til-after lunch convincing dad to go for a check up at the Accident and Emergency clinic of the Singapore General Hospital, to which it took a pretty long time before dad was warded, for further "observation".

In between that time, I made a quick dash to STGCC, and subsequently hitched a ride with a friend back to SGH after STGCC closed for the evening. I had before then cancelled all my scheduled interviews with artists (i could not be there physically and neither had I the right frame of mind to ask any enriching questions, truth be told). On hindsight, my desire to cover the annual event and meeting up with friends, seemed to pale in comparison with being by my dad's side.

On Sunday, our suspicions that dad might have had a Stroke (besides breaking bones while he fell) led to a brain CT-scan, which had shown something far more dire than expected.

The doctors had discovered multiple dots in his brain, "suspected" to be the existence of cancer cells. Perhaps that was what had lend to him loosing his balance and falling off the bed. And now with talking to dad more, seems his reactions have been stunted for a week prior to the fall. His mind might be telling him to throw away something, but instead he is holding that item in his hand for some time, standing there unable to actually execute the act … or that his memory sometimes instantaneously drops, in the middle of conversation.

But it was Sunday, and we had needed to wait for the prognosis of the specialists on Monday, when they came in to work, and assess my father's condition.

And so I headed off to STGCC again, trying to relieve my fear and anguish, by putting on a face, a smile, and buying up a storm. Amidst the frenzy of the event, sight and sounds, I went about dazed and in perpetual dream, and knew instantly I should not have been there … The notion of this online journal had suddenly become a top priority for me, the 'timeline' was instantenously shortened.

Monday came, and prognosis was in, and yes the cancer cells in the brain was real.

I spent the rest of the day with dad at the hospital and taking to doctors and signing consent forms that relieve the doctors of any responsibilities. Dad's friends turned up to see him as well, and he was looking pretty fresh and animated too! Never under-estimate the power of having "friends" who show support and encouragement by simply turning up, IMHO. i know first hand from when i was lying in bed for Stroke, back in 2010.

Radiology-wise, a treatment named "German Helmet" was mentioned (although not directly to us, just overheard on the phone). Side effects mentioned would be memory loss, from happening within months, to years in the future. I had mentioned "dementia", to which there were no specific answers, so we are not deluded to expect otherwise.

Throughout all these consultations and disclaimers, dad has been, and is continually being kept directly in the loop. We do not attempt to keep secrets, not for the fear of knowing and affecting moral (as most people might be wary of, especially in a hospital environment, where medical practicioners will doubt my father's desire to know the truth), which i allude to being the lesser evil versus "not knowing". That is the way with both my dad and i, i guess.

Tomorrow Thursday, we have an afternoon appointment to visit the Radiology department, to have a brace outfitted for dad (to ensure his head does not move about when the laser beams hit him), for treatment to begin next Monday. 10 sessions in total, back-to-back, then subsequently soon, his 7th chemo session might begin, in-between the need to remove a surgical piece left inside his body, to combat his bladder problem.

Now dad needs the aid of the four-legged walker to slowly shuffle forward, as his strength has diminished rapidly. Ironically, this walker belonged to me, when i used it in the early stages me coming home from being hospitalized for my Stroke, and has since been used a s a clothes rack hahahaha

I had struggled to share all these to the public since we found out about dad's cancer, with only a select few folks being told about it. Not because we had wanted specifically to keep it a "secret" per se, but rather not something we want to burden people with the knowledge of it's existence, nor the need to answer each and every query about his condition - to which we are extremely grateful to the folks who cared enough to ask - but perhaps this would be yet another way to address these questions, without it being a soundbyte on instagram / facebook / twitter.

And it is with dad's consent and wish, that we want to share his experience, for folks to know further about what he has, is and will be gong through, beyond medical and fact based information, from a man's point of view, much like my Stroke-blog, which shared my personal experience surviving and recovering from Stroke. And perhaps what he have experienced and learnt, would benefit others going thru similar circumstances, but have no idea the journey would be ahead, and even how to navigate the situation.

This specific blog will be about my dad's journey, and I will dedicate myself to chronicle his life from henceforth - as I have since dedicated most of my physical time with him since - something i should have done much earlier, instead worrying about what people might think of my decision and "intentions", it is my dad's life after all.

Thank you for reading,
Andy Heng

P/S: This blog is named '' because "Chiang Kheng" is his given Teochew / dialect name.