Hospital visits

8 visits to the CyberKnife surgeon, over 100 visits to the oncologist, mum's main physician, over 60 visits to the neurosurgeon...

Records do not lie. They reveal the unbelievable extent of mum's visits to the hospital in the course of the last six years. Brother went to the two hospitals where mum received her treatments to collect all the documentation necessary to file insurance claims. And the records prove that over the span of six years, mum has undergone such an ordeal. Her will has been so strong, she has been so brave, but the cancer is stronger. Too strong and now she is much weakened and close to defeat...

In and out, in and out, and in recent months more time has been spent in the hospital than outside of it. Appointments, checkups, indices, scans, blood tests, consultations filled with hope of treatment, and consultations filled with dreadful diagnoses and expectations of the worst to come. It has been such a long, long and difficult journey. One that mum embarked mostly on her own.

And it is perhaps coming to an end now that the hospice agreement has been signed. From now on, it is just a matter of treating the symptoms, soothing pain and reducing suffering.

T tube

I sat anxiously on her bed and waited with mum outside the fluoroscopy room. Even with classical music playing on my iPhone, I could not quell my worries. Though mum seemed able to doze off. Occasionally, I touched her legs and feet in a way to let her know I'm here, I'm right by her side.

The last time she was here was close to three weeks ago, when she had an NJ tube inserted to stop her from vomiting. Now that the bypass surgery seems to have been successful, she's been able to eat and the vomiting to merely one or two mouthfuls a day, if at all. It's a dramatic improvement. But jaundice, the yellowing of her skin caused by the inability to expel bile, has rid her of her appetite again. She's become so terribly frail and thin again, and is barely able to stand for more than a few minutes...

This time, the doctor wanted to insert a T tube (not sure what the T stands for...), which will penetrate the biliary tree (group of vessels leading from the gallbladder which produces bile), so as to drain the bile that for a while has been unable to pass out of her body. I read on a notice board that long term bile retention will cause not just the skin and eye whites to become eye yellows, but also cause body poisoning and even liver failure. Hopefully, it has not come to that...

Mum was wheeled into the fluoroscopy room, and I stood by her, held her arm until I was told to go. Earlier I saw a notice saying when children need to undergo a medical intervention, parents or carers should remain by their side to calm the children. I don't understand why this is only limited to patients who are children...

I was so tired after I left the room, and feeling somewhat ill. I've been skewing late to study, and get woken up when the daytime carer arrives before seven, so not much sleep. I was told that the procedure would take around an hour or so, so I headed back to her room to nap a little. I was getting very dizzy and faint...

I barely got to rest when mum was wheeled back. She was drifting in and out of consciousness, due to the anaesthesia. On her right hand side was a tube and a pouch, and already it was filling quickly blacks vile-looking black liquid.

The doctor came by and said the procedure was a success, and that mum should soon feel some relief. Mum looked tired but hopeful, and though she slept most of the afternoon, she did say that the bloated feelings in her stomach were slowly subsiding. It is not known yet how long she has to have to T tube inserted (by my understanding, as long as necessary until the blockage issue is resolved... which may mean another major surgery to reroute the duodenum and bile ducts, as the surgeon previously suggested...) But at least for now, one issue has been resolved, and I will be so happy if mum can go home soon...

Lump

Mum looked like she was in a lot of pain. When asked what it feels like, she cannot say. "Just discomfort all over..." The problem is mainly in the bowel area.

She asked me to rub some mint ointment on her belly, which to some degree would alleviate the discomfort of bloatedness she feels.

There was a visible and touchable lump to the right of her latest incision. It felt hard and abnormal. It was the source of much of mum's current discomforts...

"How hard it is on you..." I kept on saying to mum. It may sound condescending, trivialising, but not combined with the way I would rub mum's back whenever I said those words to mum.

It really has been so hard on her. She seemed to be recovering and was so hopeful toward the end of last week to be discharged, but her skin turned yellower and yellower, and her appetite (and hence also strength...) deteriorated and deteriorated...

Tomorrow a small surgical procedure is planned to insert a tube to drain bile from the inflamed gallbladder. That should relieve the bloated feelings and hopefully make the jaundice subside with time. After some googling online, I came across some startling news. Jaundice may also be caused by pancreatic cancer... Could it be? Could it be...?

How hard it has been for her, to be so tormented by her body, and over the past few months, to have to deal with issue after issue after issue.

I hope and pray, hope and pray that mum can go home soon, for she needs to be home, she needs to be reminded that there is a world beyond these hospital walls.

For the longer she stays at the hospital, the weaker her resolve is, the more she is growing weaker in mind and spirit...

Dream

We went to a remote area to find this miracle doctor. A famed surgeon who could cure cancer, who could go in and remove everything in one go. Mum had so much faith in the guy after she heard it from a lady at a shop.

I googled online for his name... What was his name? Why did I spend hours looking for it but could not find it. Rumour had it he is located somewhere near Linkou, an area near the international area, where there is also a massive medical hospital. But I could not find him. With more searching and playing with words online, I eventually managed to track down an address and a phone number.

I had visions of him opening up a person's body. It was a soldier for some reason. And from inside the body, this famed surgeon took out bones. Bones that were not belonging to the person whose stomach had been somehow opened (not cut open, but just "opened...") They were bones belonging to a child r a baby...

Mum and I ventured to this place. It was not a hospital, but a little shack on the side of the road, situated at a busy intersection. How disappointed we were. But on the shack was a big billboard bearing the surgeon's name. White characters against a  brown background.

It was the most bizarre dream... So intense, so filled with hope in the beginning, and then everything just broke down at the end with a great big disappointment...

Talk with the doctor

The doctor came around the usual time of a little past seven in the morning. He greeted mum, and asked her the usual questions of how she has been doing, what she has eaten and how much she excreted. It's important to keep track of all that goes in and comes out.


Before he turned to leave, he gestured to me and mouthed to me to follow him. Just me. "We never talked about what happened during the operation last week, did we?"

No, we didn't. I am anxious to know, but for several days, even till today, I was/am so worn born the tension building up to the surgery that all I needed to know was whether mum could eat again.

The doctor led me to a room and sat down at a computer. The bypass surgery was a success, and they managed to do what they set out to do, which is reroute the intestines so that mum can ingest food and drink again. The vomiting and diarrhea is normal in the beginning, and should with time subside and disappear once mum's bowels get used to the redirected flow through her body. After all, the body has been used to the "natural" flow for so many decades, and asking it to get used to a change of course takes time.

The good news is that the situation is not as severe as they suspected inside (but, still it is severe. The spread of cancer always is ...). The cause of mum's vomiting is not a recurrence in the colon, as diagnosed earlier, for the colon is very 'clean' still, even six years after her initial diagnosis and operation to remove part of the colon. The problem lies in the duodenum, the beginning section of the small intestines. The doctor showed me a power point presentation of mum's case, for it has been discussed by a number of doctors including one from internal medicine. One slide contained a picture of mum's belly with an incision. In the opening, a bundled mass of pink and red came out (WARNING: graphic pictures of what the image looked like). There was a bit around 15cm or so which the doctor pointed to and said was the 'infected' part of the duodenum.

The doctor said that section is removable. They did not do it during the last procedure for the risks associated with it is high, and they could not perform the removal when she was in a terrible condition (she still is very frail...). The doctors recommend that after mum's health is stable that perhaps she can undergo treatment to remove the cancerous part of the duodenum.

"Another surgery..." I thought to myself. Just when we thought it has finished, the doctor came back with news of another possible surgery. There is a reason why he only told me, and has not told mum yet. For it is probably too much of a shock just after one surgery to let the patient in on the possibility of another surgery coming up. It was already a shock to me, and made me rethink my plans in the coming period, and over the coming year. I thought I could make plans to go back to my own life and start pursue my dreams again, but one talk, and a lot of my imaginations and plans are now on shaky grounds..

It will be a risky operation, but if removed, then at least that bit of the body will be rid of a major source of cancer. "Fifty-fifty..."

"What do you mean by that?"

"The chance of survival if removed. " Thus the same chance, same risk if not removed.

I asked how long we need to consider this, and whether he could give us an idea of how quickly or badly the cancer will grow and spread. As expected, there was no time.

I went back to mum's room and she was of course curious why I was called out.

"Oh, the doctor said your surgery went well, and the situation is better than expected..." I held my self. I dared not look mum in the eyes for long. I felt like I was betraying her, lying to her by not immediately telling her the truth.

Forgive me mum, I need time to figure out how... I need time to process it myself and time to build up the strength to tell you in so many words so as not to scare you or disappoint you...

Agreement

"... The whole body anaesthesia may cause stroke, heart attack, and she may go into shock. In her state of health, there is a high risk..." the anaesthetist explained.

"What is the probability?" My mind raced with images of mum lying there connected to a life support machine. I could hear the beeping sound of her life... I could see mum lying there unconscious, all life draining from her body... Fear, such fears!

"Five percent."

Whatever the probability, we must proceed, for it is mum's wish. There is a line handwritten by the surgeon himself "If the blockage is too severe, there is the likelihood the bypass cannot be proceeded with". That line sent fear up my spine, and for a while after reading that I felt such dread, such terrible dread... What if the surgery fails? What then?

It is mum's wish to put her life ad condition in the hands of the doctors. Buy I have to sign the consent forms. Again it feels like such a heavy, heavy responsibility.

May it be that I just signed a sentence to give mum a renewed chance at life again...

A life where she can eat again, drink again, and a chance to recover some of how lost health so she can live her days happy and free from too much pain and suffering...

CVC and TPN

The doctor suddenly came in and presented us with the fact that mum's nutritional intake may not be enough for the impending surgery. He recommends the placement of a CVC (central venous catheter) in order to conduct TPN (total parenteral nutrition), which is reserved for patients who cannot take in food the "normal" way.

He came back with a nurse, and right there, on her bed, injected a massive needle into a vein on the side of mum's neck. Some local anesthesia was administered, but still it does not completely remove the pain that lingers on. This is all in preparation for the intestinal bypass surgery, planned for tomorrow.

Already, mum has a tube sticking out of her nostril, two tubes going into her port vein, and now two more places on the neck where tubes can be connected to. It's not a pretty sight, and again the question that arises: what are they doing to her? Is she soon going to be free from all these tubes and invasive treatments...? Will any of this work to "treat" her inability to ingest food and even water, or are all these procedures just prolonging her pain and suffering?


Mum is lying there, now even more lethargic and perhaps in even more pain than before. And it is so difficult, so very difficult to bear...




PS: something I read on Wikipedia (the most reliable source of information, I know...) worried me:

There is no evidence to support the idea that intravenous nutrition 'feeds the cancer, not the patient', but weight loss with advanced disease is significantly more complicated than simply replacing calories as cancer produces a multitude of chemicals that also lead to weight loss, and giving extra nutrition does not prevent this.

Waiting...

Almost one and a half hours since mum entered the room. The assistant said one hour at most.

The wait is gruesomely long...

I hope mum is alright...

I hope my dear, brave mum is alright...

Fluoroscopy

Mum looked so forlorn and so afraid when I left her. I patted her legs, and before the assistant covered her body with a blanket, I held her hand. Tightly, reassuringly, warmly, not letting go, even though her grip was so weak it was almost non-existent.

I didn't say anything, for the assistant was explaining the procedure and trying to calm mum down. I would have said: "Hang on there, I'll be right outside! I'm here with you." I can only hope the grip of my hand, and the smile I flashed her told her so much.

I could have missed her completely before she went into the fluoroscopy room. I was running an errand and went to the post office to mail mum's doctor's notes to my sister-in-law, just in case she or my brother would need it. When I returned to mum's room, the bed was gone, the room was empty. I was afraid of not being there before mum conducted the NJ tube insertion procedure. I imagined that mum would be frightened, for this is a resort she never did really warm up to, and I wanted to be by her side. The nurse who tends to her confirmed that mum had already gone down to have the tube inserted.

I ran down the stairs, 9 floors down to the second floor. Waiting for the lift, and most likely needing to stop on every floor, would have been excruciatingly long.

Is there such a thing as fate? Were things somehow destined to be, for is arcane knowledge and aimless wanderings around the hospital not so aimless and not so arcane after all? I had done some prior research online about how an NJ tube works and how it is inserted. I know from my browsings that a fluoroscopy (sort of xray) is needed to ensure that the long, long tubing is directed into the correct passage once it goes down the nostril. One wrong move, and it could go into the air duct, and down into the lungs, causing severe damage. And by pure coincidence, the other night as I took some time alone to walk around a bit after dinner, I wandered into the area of the hospital where fluoroscopy is conducted. Coincidence? Or meant to be?

Mum is inside now, hard to imagine that she and I are separates by a mere few metres. What anxieties is she feeling? What discomforts? What sense of loss of dignity and powerlessness as she watches with wide open eyes as a very invasive and long tube is inserted down her nose?
I cannot imagine her fears, I cannot imagine how she is feeling. I cannot imagine how I would be feeling. I cannot imagine how I could comfort her, reassure her afterwards, when I see her with a tube hanging out of her nostril, that things are still normal. I cannot know how she will feel, how I will feel. Such fears, such unknown fears, such crippling fears!

We had a hectic morning. The main Colonrectal surgeon came early, around sevenish, and I had a chance to ask him about mum's condition in more detail. He said he fears that the NJ tube may not be able to pass through the blockage, for the tumour may have completely blocked off the opening into the intestines. This may explain mum's severe, and increasingly severe, vomiting of stomach fluids, because there may simply be no way down.

Surgery is a possibility, but one the surgeon wants mum and the relatives to decide. He cannot and did not say we have to do it. He was honest and frank in the way he presented the facts and risks, like a true, moral doctor would. I know that the situation inside is not pleasant, that there are multiple growths in the intestines and colon even, from the images I've seen. But the doctor cannot say for sure how (bad?) the situation is until they go inside. It could be that the linings of the intestines are festering with cancerous cells, which will make healing after surgery very difficult, if not impossible. The surgery may not kill mum, even in her state of health, but the question is whether mum can survive the recovery and rehabilitation after surgery. Just the spinal surgery took her close to two months to recover (though, it is hard to tell, for in the mean time, she began CyberKnife and also began to vomit...).
How would an intestinal bypass affect her body and overall wellbeing, both physical and mental?

My aunts (mum's youngest sister and mum's first brother's wife) were outside the fluoroscopy room, and another aunt (mum's second brother's wife) and a friend of mum's have arrived since mum entered.

Five people all waiting, all hoping, all ready to rally around mum as soon as she exits from this very invasive procedure.

Around this brave heroine, who fights and struggles, who preserves and rarely flinches or cries, there is a group of loved ones and precious supporters who will be there till the end...

NG

It was close to one in the morning. The nurse came back with the night shift doctor after I called her and told her about mum's latest vomiting session. Half a bag-ful of stomach juices. The doctor estimates it is about 300ml. Third time since around eight at night, sixth time Since the start of day. The latest time, Mum just kept on vomiting, vomiting, vomiting for around a minute. My heart kept on breaking, breaking, breaking...

The doctor suggested Inserting a tube to extract excess stomach fluids. Not the NJ proposed earlier, but an NG tube, nasogastric tube, which extends to the stomach and either with the aid of gravity or with the aid a pump can draw out excess fluids that otherwise would come out through the oesophagus and the mouth.

"No, no, I don't want [to] insert the tube! No... Too painful..."

Mum's answer was clear, and the nurse and doctor both agreed it may be uncomfortable and "in the way". Of course it would be! something is going through your nostril and down into the stomach! "But it's what I recommend if you keep on vomiting," the doctor said.

Mum looked so drained, so tormented by her body and the uncontrollable vomiting that has disturbed her sleep for so many nights and seems to e getting worse every night. She was curled up again in a foetal position that even for me, being very flexible and soft-boned, looks very uncomfortable. She was displaying a sign of helplessness, of fear, of dread, as if she wanted to be shielded away from everything that hurts, everything that causes her more suffering, more pain!

I recommended her to sit up and try to sleep on a chair, so that perhaps the stomach fluids won't so easily flow up and escape through the mouth.

I held her hands and massaged them... Silently, I hoped and prayed as I held her hands, her pain, her suffering could be temporarily relieved...

Life choices

I somehow felt uneasy about going home to sleep last night when my aunt offered to take the night shift. The doctor always comes early for his routine visit, and I always want to be there to listen, take notes (figuratively) and ask questions if necessary. But I hadn't been home to sleep for almost a week, and was getting very tired. And I know sometimes I need to let go and just let others take over from me, or otherwise I'll over-exhaust myself.

So I went home, slept almost immediately as I got home. Even though I was in the comfort of home, away from seeing mum vomit (and away from the worst night of vomiting ever...), I slept poorly, and woke up two three times from dreams... I set the alarm for six thirty, and made a point to getting to the hospital by seven thirty.

I arrived and the doctor had already been. I missed perhaps the most important appointment of all, for the doctors had another meeting in light of mum's severe and worsening bouts of vomiting (is it still called vomiting, when there is nothing to vomit but stomach juices?). Why on the day where I happened not to be there?

The vomiting will not be helped by the insertion of an NJ feeding tube, the doctors said, for the cause of the vomiting is due to the inability for stomach fluids to escape through the other end, so instead it all comes out the other end, through the mouth. The feeding tube will only solve the issue of mum getting nutrition the "natural" way.

The alternative is a bypass surgery, which the doctors had put aside before it is a risky and perhaps not hundred percent effective solution. Further, a bypass surgery to reroute the intestines to bypass the area blocked by the growing tumour may, if effective in resolving the issue of food flowing down, will only serve its purpose for a limited time. The tumour in that region, which I saw on the MRI and endoscope images, is certain to grow and grow without chemo or radiotherapy (which if mum opts for later, will certainly make her even weaker or even kill her...).

But now the doctors came back and revives the option, and wants mum to decide. It's a tough, tough choice, and what a "great" way to start the day; a way which set a bad mood for the day and which occupied our minds.

The NJ tube is only able to resolve mum's nutritional intake, but will not be able to address the discomfort and pain from vomiting. Further, it is aesthetically displeasing, and mum was very hesitant to do it from the very start. In fact, I already bought the tube last week, and dared not show it to her, for it is very, very long, and sickening to think about it being inserted into your body all the way to the intestines.

The bypass will solve two problems, vomiting and mum's ability to eat and absorb food naturally. But the surgery i is very difficult, and may leave mum, who is already in a poor state of health, in poorer state of health. It may perhaps even kill her. And how long will the surgery allow mum to eat and drink like before? If the tumour is growing and spreading rapidly, it may could be weeks, months Before mum has to go through the same hell of vomiting and getting so very thin as she is experiencing now. When we come to that, there will be no other cure. And what is the point then of a big surgery, and weeks of recovery time that follows when at the end of the however long period, the problem returns? The surgery only deals with the symptoms of mum's current discomforts, and does not address the problem of the tumour or spreading. The tumour cannot be addressed, for it is in a region close to a lymph node, and if remove will cause extreme levels of bleeding. And sometimes, when you tamper with a tumour, it may be like opening a Pandora's Box, and cause the cancer to spread and grow even more rapidly and ferociously.

Again the choice is a matter of life and death, and more poignantly of how to die... Die from vomiting and vomiting and getting worn down mentally by having to vomit so much everyday, or die from cancer spreading after undergoing yet another surgery that will cause such trauma to mum's body and soul and leave her perhaps so terribly weak for as long as she may live?

Have we come to this now, come to weighing in the possible salvation a quick death will bring against the of pains of prolonging life and dying a painful and slow death when the cancer eats away everything? How crude and cruel it seems that is the only way that mum can leave behind all this pain, all this suffering? How meaningless life has become for her! How painful it is to see a once proud and able human being, my own mother, descend into a level of existence that is just dreading vomiting, bone sores and suffering intense hunger!

I climbed into mum's bed and held her hand. There was nothing I could say, nothing worthy of saying. What do you say to all this? What do you say to someone faced with a choice of the lesser painful way to go, when both options are so painful and so unbearable to think of?

I just held her hand. Silently, I told her I will be by her side.

Neurosurgeon

I've always a good feeling about him, ever since I first met him around three months ago. He is very courteous and caring, and has a nice smile. Some say he looks a lot like me, tall, thin, perhaps a bit nerdy-looking, and is perhaps only a few years older than me. Mum even says he asks about me when I am not with her during follow up appointments.

Mum made an appointment with the young neurosurgeon about two weeks ago, a follow up to see how her spine is recovering. A the time mum was severely vomiting already, and the neurosurgeon was very concerned, even though it is not related to his field of practice. He said he would do anything he can to get mum into hospital, even have mum admitted into her ward if necessary just to give her IV drips. It wasn't necessary, but he offered the help, and that was enough to touch mum's heart again.

As mum was in hospital already and too weak to go downstairs to the clinic to make her appointment with the neurosurgeon, she asked me to go on her behalf. "Please thank him for everything he's done for me. The surgery was beautiful and I am very happy..."

I went to see him at the allotted time, and passed on my message. "Where is she? I'll go see her when I'm done with my consultation hours."

And true to his word, two hours or so later he dropped by. Mum was surprised and delighted to see him, and immediately got up from lying down. They chatted for a good while, mum narrated her story (ordeal...) since she last saw him, and he listened patiently.

"Thank you so much for everything you've done. The surgery was very well done, and I am so fortunate to be under your care..."

The surgeon was embarrassed mum kept thanking him, but it really came from her heart. She says she has been so blessed by this neurosurgeon who, when mum was in hospital after the surgery and back in early March, would come see mum everyday and check up on her condition. Always with a smile, always giving her encouragements and invaluable kind words.

"I really did not expect the cancer to grow so fast..." the surgeon said sadly. Mum knew he tried his best, and he gave her priceless opportunity to salvage her ability to walk and move her limbs. Even for a few months, the few months since January, it is enough to safeguard mum's dignity and worth as a person. Otherwise, being completely bed-bound and reliant on another for your everyday basic needs is (without disrespect for those who are like this...) torturous and unbearable for mum. She said to me she would rather die than be like that...



Mum truly has been blessed, and she is eternally grateful. Not only the neurosurgeon has been so kind and patient, for now in the colorectal surgery ward, she is under the care of a surgeon who is perhaps the most esteemed in the field in the country, a surgeon who operated on a former president. He too visits almost everyday, and talks to mum frankly about her condition, giving her the confidence and facts that she needs to process the reality of the situation she is now in with compassionate understanding and a gentle smile.

This is the kind of medical team she needs at her side as she embarks on this final leg of her journey of life. She has the support and expertise, compassion and humane sensibilities of doctors who respects the patient's will and opinion, and is not just out there to make a quick buck or throw medical jargons around and authoritatively tell you what you must do.

"If you need me, you have my direct office line," the neurosurgeon said before he left. "Anything I can help you with. And I'll come to see you sometime again. Take good care!" And he turned to me "Anything you need, you know where to find me!"

He left the room, and left my mum smiling, confident and content, even in the face of the most adverse of circumstances.

Trial...

I got three, perhaps three and a half hours of sleep yesterday. I was furiously writing, writing down my emotions and about events in the day till one or so.

When I lay down to sleep, I could not. My stomach felt very acidy, and there was a lot of pain that made me feel like vomiting (but I could not, and I did not vomit...). Mum too had a rough night, and was sort of half asleep till three-ish when she asked the nurse to take off her IV drip, for her hand was getting red and swollen.

I could not sleep much, lay awake thinking, or having thoughts run through my head...

Morning rolled around, and unusually it was a beautiful, bright day (to start with at least...) The doctor came in with a consent form, one that is still unsigned and still lying on the table. Consent form for the insertion of the NJ tube, which can be expected to be done either today or wednesday.

Mum still has some questions, about whether it will hurt, about the discomfort and pain. The doctor admitted he had it installed once, and it was uncomfortable to start with, but you'll get used to it.

"Is this the only option?" mum asked.

"It's the best option..." the doctor said it is the only way mum can get any possible nutrients, for her vomiting has again intensified. Yesterday, she threw up four times no less, whereas a few days ago she could still drink soup and liquids without much vomiting. Even last night, when she lay down to sleep around eleven or so, she suddenly called me and said she needed to vomit. And she did, a big bag of brownish liquid. When the nurse gave her some medicine to stop vomiting, within a few minutes, she vomited yet again...

"There may be a chance the [nose] tube may not go through, if it has grown too big..." "It" meaning the tumour, the ugly, ugly tumour that is growing stronger as mum grows ever weaker. "Then it would be more complicated, as we's have to get the team together to see what to do..." The doctor looked uneasy, and hesitated to say what other options there are, if indeed there are any.

As the doctor left, I spoke to him quietly outside mum's room. "If you have a minute later, I'd like to see mum's scans..."

I want to know, I have the right to know, as does mum, though perhaps she does not want to know.

I have this sordid obsession of wanting to see the tumour, see the extent of the "damage" inside. For my sake, perhaps, just to make sure that what I have been imagining, what I have been thinking and the ideas I have been proposing are not too far fetched.

Because we only have a chance at life, we only have a chance at living. We only have a chance at getting it "right" in preparation for the end of life. If there are options we have not looked at, facts mum (and I) do not yet know about, we need to know, and we need to know now.

NJ

I thought I heard wrong when my aunts told me after I came back from a two hour rest at home in the afternoon. "They'll have to insert a tube into her," they said. I immediately thought of patients who are close to the end of life, and who must have a tube inserted into their noses to ensure feeding and to sustain life. It was a terrible image, and I could not imagine mum like that...

The doctor came the next morning, and briefly explained the details. Mum, as ever, was hesitant to ask questions, so I asked most of the questions. The blockage in the small intestines is such that operation will be a difficult task. And the operation  may not be worth it on balance of the risks and benefits to be derived. The doctor did not mention it, but hinted that the cancer may be already too advanced that if you are to operate and create a bypass, it may fail as soon as the cancer spreads and grows. So the best option is a socalled "NJ tube" to solve mum's inability to eat. It is the most pressing problem that must be solved, for being unable to eat is draining her remaining sources of energy.

I later did some research of my own online, and the NJ tube is inserted through the nose and pushed deep, deep inside into a section of the intestines called jujenum, hence the name nasojujenum (NJ) tube (nose to the jujenum). "Food", only in liquid form and cannot be too thick of have any bits inside, must be pushed through the tube with a syringe of some sorts, and the 'food' will directly enter the small intestines to be absorbed.

It is  a very sickening idea for some reason, and I am not happy with the solution. But it is the best solution, and for now the only solution. The alternative is to let mum waste away and deplete her reserves, of which there may not be much left...

"Where's the dignity in this...?" mum kept on asking. It was a rhetorical question, but despite the doctor's assurance that there are many who are fed through this method, mum seems very distraught by the idea that for the rest of her natural life she may have to walk around with a tube hanging out of one of her nostrils... How this will impact her already shattered confidence! How this will cause her to withdraw even more and be even less willing to meet people and friends!

Indeed, where is the dignity is that?

Severe

I looked at mum from the corner of my eyes, and she is sitting in her chair, her arm raised, her face seemingly in pain. She sits there, hour after hour... She gets up on the rare occasion to walk around a little bit, then she either sits down again or lies down. Every day is like this. Every single day...

I have to ask her, or otherwise she would not go out the house. "Too cold...", "It's raining..."... Of course it's too cold or raining here. It's the typical kind of weather in Taipei in the Winter and Spring months. But the more she does not go out, the less she wants to go out. And the less she moves, the more her bones will deteriorate, and the slower she will regain her health. 

I cannot understand... I simply, simply cannot understand how it is to be ill. I cannot understand what it feels like to vomit, to feel sick, to be mentally so weighed down by cancer. But it pains me.

It pains me so greatly to see mum like this...
 As if she has given up, as if she is just waiting to die...
She cannot eat. She eats half a bowl here, a mouthful there. And more often than not, it all comes out.

I am boiling in frustration. My head is spinning with a sense of hopelessness, anger, and rage. What is wrong... what am I doing wrong? Why is mum so unwell after all that I try to do for her? She was getting better before, but now with me around she seems to be getting steadily worse. I am only trying my best... Perhaps I am not trying hard enough...








Today, when I dragged her out to dinner, we walked in silence a bit. Then at one pint she said: "I should have not done CyberKnife. I've become so weak from the surgery, and the [CyberKnife] treatment made me even worse. I have no strength left..."

Immediately I felt so terribly guilty. Who was it who pushed for the treatment? Who told mum it would only be a few days? Who has to bear the side-effects, the severe fatigue, the nausea and listlessness afterwards? It's not me. I just signed the agreement to proceed. But she, she has to bear the consequences... Where did I get the authority over her health? Where did I get the say over her life or death? Why are people looking to me to decide what is best for her? Why do my grandma (mum's (step)mother), my aunt (mum's brother's wife), and my uncles (mum's brothers) all tell me that I should stick around and decide treatment for her?  I don't want to shoulder all these responsibilities. I can hardly decide my own life, let alone that of my mother's...

I feel so terribly, terribly guilty. Her pain, her suffering. Is it my doing? I only meant well... I only hoped that if she did the CyberKnife treatment soon, the tumour would not grow to be too large to handle. No, mum is not blaming me for anything. She was just saying how tired she feels, and how much she feels she should have rested more before proceeding with treatment.

Follow up

doctor's drawing

We arrived pretty early at the hospital, and the waiting area was almost empty. Saturday morning, and as there were not many people around, the doctor was absent temporarily for a routine check on his patients at the hospital.

It was not long before he returned and called us into his consultation room. He remembered us, and quickly pulled up mum's files, including the latest MRI scan from three days before (yes, it's that efficient...). 

 Unlike other doctors mum has consulted, this one at the new hospital who is in charge of mum's CyberKnife treatment, took us through the images. He explained slowly  what he had done, how he assessed the risks and planned the treatment to be spread out over four days: one day for the lower spine area (section L5), and three separate days for the T2 section higher up. He was courteous and friendly all the way, and even picked up a pen and paper and began to draw. As the T2 section is immediately below the column which was removed in the recent  surgery, and where a metallic support has been installed in its stead, the doctor could not use gamma ray radiation from a direct angle. The metallic components would deflect the rays, and instead of killing the tumour cells damage cells in the spinal cord and also esophagus. So the solution is to radiate from an angle to minise damage to surrounding body parts, and maximise expose of the tumour to the radiation. But of course, even at an angle, a bit of the radiation will still affect the surrounding parts. Mum told me later in the evening that she is feeling a throat ache and having pain swallowing. The symptoms are coming...

Compression on the nerve

The lower spine section is more or less treated and should be in control. But the problem is the area near source of the great big lump that was removed. Another reason for the prolonged treatment was because the doctor wanted to make sure all the bits of the tumour that were unable to be removed completely can be radiated to prevent the risk of them coming back again.

"What about the numbness in my right hand?" mum asked. The numbness that has caused her signatures to be no more than a scribble. The numbness that now means every time we go out to eat, I have to request a fork (which often the waiter/waitress would hand to me, thinking I need it... I have since been carrying a fork with me in my bag.)


The doctor showed us another image of her spinal cord. "You see this lump here? That's the lump compressing on the spine and affecting mobility in the right hand". The gamma ray was directed at that lump, but the effects of the radiation is not immediate, and it will take around three months or so for the lump to shrink and disappear. Much longer than I expected, for I was thinking once radiated the tumour would just vaporise and break down... I was disappointed. Mum has to live with numbness in her hand and arm again for several more months. She went through that ordeal already with her left hand and left arm. And now it's the right one... I remember thinking last year when she was in almost constant pain and feeling constaly numbness, thank goodness it's not her right hand, which she uses for everything. But it now is...

"And there's another section that I am looking at and planning treatment for," the doctor said as he switched images and located section C2, five sections higher than the removed section. Five sections closer to the brain.

He showed us what a normal, unaffected bone structure looks like. White, with light greyish patterns on the inside. Section C2 is obviously much greyer, and the patterns are denser and more complex. I looked at it with dread. I looked at the image with question the question: Why...? Why...? But there is no reason. There is no answer as to why. It just is.

C2

"I think it's best to treat that soon, and I'm planning how to do this with the least possible damage," the doctor said. C2 is very high up, and the throat and spinal tissues around there are more sensitive than others. "I will let my assistant call you if need be. It should only be a day or so."

I could tell mum was confident and comfortable with this doctor, even more so than with her main physician, whom she is beginning to distrust and even dislike because of his attitude, especially after her surgery. So she asked the CyberKnife specialist to recommend one, preferably somewhere around where we live.

He smiled and was very frank with us, as was his assistant sitting next to his desk. There is a specialist cancer hospital close by, which mum and I both thought might have better doctors and would like to be transferred to. But they were frank with us: that hospital is for rich people with bottomless pockets. They will ask you to pay and pay and pay, and the doctors aren't really very good. And he also told us at his own hospital, the doctors are not of good quality either. Besides, it's far too far away from where we live. "Better stay where you are, and I will refer you to a new doctor at the same hospital where you are now. I'll call you soon," he said, with a smile.

I thanked him profusely for his patience, for his understanding and for spending almost twenty minutes with us, while outside I noticed after I left his office, there were already half a dozen people waiting. "There is a humane doctor, one who really cares about the patient's wellbeing..." Mum smiled, and looked reassured for a moment, and perhaps I was imagining it, but she also looked confident, and a little bit stronger.

The day was not over yet, for she still had an appointment with the gastroenterologists for her stomach upsets and almost daily vomiting for over two weeks already. Even the medicine that was prescribed to her does not seem to work too well.

The doctor took a look at the Xray that was made of her last week, and saw no sign of gas accumulation. "We need to do an endoscopy to really find out what is wrong, otherwise we can't tell for sure..."

Mum, I could see, was filled with dread. "That's so uncomfortable... And I just went through this surgery..." I know it myself, how very uncomfortable and sickening the experience can be when a tube is shoved down your throat till you gag... She did not want to go through it, and said she will just take some pills and wait and see if there is an improvement. 

There could be any number of reasons why she has been throwing up. Her bad quality of sleep and nausea over the past two, three weeks. The steroids she has been taking in the run up and also after her CyberKnife treatment... The glutamine I bought her and asked her to take every day could also induce vomiting... Even the treatment itself may cause stomach upsets and induce throwing up. Many number of reasons.

Mere moments later, she threw up again.

Follow up

Another suspected spread, another treatment due...

Treatment Day Four

The fourth and final day of treatment. Or so I hope.

We again took the taxi to the hospital, and mere minutes after getting off, I could see mum was unwell again. Her mouth puffed, and her lips sealed tightly. I instinctively took out a plastic bag from my backpack and gave it to her quickly. Plastic bags have become a "must-carry" whenever we go anywhere now. As expected, she vomited. Everything from breakfast came out again. I patted her back. She coughed and choked. I swallowed my tears.

 I accompanied her inside the operating room, and helped her onto the operating table. She closed her eyes and grimaced in pain. "I know, I know... But this is the last treatment," I said to her, grabbing her hand. The very last treatment I do hope. The very last treatment...

 The radiologist kindly asked me to leave the room. I paced around outside, watched the crowd, imagined mum inside. A guy next to me was watching a comedy on his hand-held device, and his laughter filled the corridor. Later, he got up and picked up who I believe is his son. His son who was in a vegetative state. The man gently grabbed his son and placed him in a wheelchair. I watched them disappear into the crowd. The echo of the man's laughter remained in the corridor, remained in my head...

 Whirring sounds and a low siren constantly sounded. The technician operating the machine again went in and out of the operating room to adjust mum's position and operating table. Every time he passed me, he would gesture to me to sit and say, "Not yet. It's not finished yet." I would weakly smile at him. I would thank him. Then about forty minutes or so after mum went in, the red light turned off, and the brown door slowly, slowly opened.The technician walked by and smiled at me. "Please, you can go in now..."

 I walked inside, and saw the gigantic machine, motionless. With its metallic arm, its impressive-looking head, it stood there, looking proud and imposing. Mum lay there, also motionless. The blue mould that was made of her body the week before made sure that she lies as still as possible. Mum's eyes were closed, and only when I called out "Mama..." did she open her tired eyes.

"Is it over?"

"It is over." Dear god, please let this be over. Please. Please... "How are you feeling? Did you rest?" I asked. Streaks of infra-red, used to pinpoint and target the coordinates of the tumour, shone on her forehead and upper body.

The technician, a kind, gentle man, helped mum up, and gave her a pat on her back. Mum looked tired, so very, very tired. I held her hand and helped her down from the operating table. She wobbled a little and slowly we walked out the room.

"Thank you," I said, following mum. As much as I am thankful to the gentle man for his patience and hard work throughout these last four days of treatment, in a way I do not wish to see him or the CyberKnife, or any other medical equipment, again. An MRI scan was planned for an hour from then.

Mum felt a little better after a little lunch. Just some congee, a few vegetables and vegetarian steak, but at least she held it down in her stomach, which meant she absorbed the nutrients necessary for her to regain her health, regain her strength.

"The [glutamine] really helps," she said, "My throat is not as sore as before."

I joked: "Well you've had lots of experience, and now know what works and what does not. You should write a blog."

Mum smiled.

Valentines Day

She threw up again just before entering the cyberknife operating room. What little she ate, a bowl of congee, nuts and a slice or two of mandarin, poured out of her mouth in the hall of the hospital. I patted her back, but looked away for fear of getting sick myself, and handed her a bag and water to swish her mouth. I held her hand in an attempt to calm her, reassure her.

Almost an hour since she went in for treatment. Again, the technician went in and out to adjust her body and posture for the machine to operate. On the counter of the registration desk of the oncology ward was a beautiful, beautiful bouquet of roses, with two little Teddy bears on top. How lucky that girl/ boy is to get such beautiful flowers and expression of love on this special day.

--

Mum came out over an hour later. A few steps later she threw up again. And again.

Treatment Day Two

The siren constantly hummed, a low and annoying echo. The radiologists went in and out of the room in a hurry, numerous times, as if something seems to be going wrong.

From a distance, I watched her lie in that room, mere metres away from me. Motionless, under a green hospital-issue blanket, I somehow cannot shake away the image of corpse lying in the morgue.

Mum was in the "operation room" for over an hour and a half. The technician explained later because of the metallic artificial spinal column installed after the surgery, the computer automatically shut down many times for fear of hitting the artificial spine. The gamma ray will deflect if it hits metallic objects, and the computer, with help of X-rays and infra-red scanners, is smart enough to detect if there are obstructions in the way of the targeted area. So the technician had to go in various times to adjust mum's position and the operation table to ensure as accurate a procedure as possible.

Mum looked visibly weak after she came out. She had to lie there in a mould that was made of her body earlier and keep perfectly still while the machine twists and turns above her head, while red beams scan the length of her body to continually calibrate the target coordinates.

But the day at the hospital was not over yet, for had another appointment with a new doctor to see if is anything wrong with her bowels. And immediately after that and X-Ray was taken.

By the time we got home it was already past three in the afternoon...