After over 3 months, our Merlins at Hotel Starship seem to have sorted out the cholingitis (inflammation/infection of the bile ducts) that Princess of the House has been battling with. In June, we checked into Hotel Starship for what we thought would be a short stay. We ended up with a 6-week hospital vacation, and a series of Percutaneous Transhepatic Cholangiogram (PTC).
A PTC is a surgical procedure where a sort of “x-ray” is done on the liver and the bile ducts. Imagine a plumber, going underneath your house to have a look at the pipes. Well, a PTC allows the Merlins at Starship to have a look at where the blockages are in Princess’ bile ducts.
During a PTC, our magician at Starship inserts a little needle into Princess’ liver and watches the needle on a special x-ray machine. A contrast is injected into the bile ducts, to see how the contrasting agent flows. The x-rays will tell whether the plumbing of the bile ducts is ok. Princess of the House has had a sort of odyssey with PTCs in the last few months.
The PTC she first had 3 months ago found a 5 cm narrowing in her bile ducts. So the plumbing exercises began. We had a magic maker Dave Duncan who dressed in surgical clothes looks almost as formidable as Dr House (except Dr Duncan is more dashing).
Dr Duncan was Princess of the House’s “plumber”. The first two “pipes” (rubber stent put in to stretch the bile ducts so bile can flow freely) didn’t do their job. A third stent did the job. Still, the stent had to stay inside, to stretch the stricture.
On Monday, our magician did his usual magic. Princess of the House was put to sleep after a 12-hour fast. He squirted some contrast to see how the ducts did, and was happy the stent did its job. Out came the stent.
This morning, just after 8am, a very on-time and exuberant Dr Ben Hope came with the happy news for us – we can go home - only after one night at Hotel Starship – unbelievable!
Seeking the extraordinary
Princess of the House is happy the stent is out. (She has had an “appendage” or a tube which has bee capped hanging out of her abdomen for ages). It means she can get back to the love of her life – her gymnastics; and perhaps swimming and her ballroom dancing. Maybe a season of touch rugby, depending on how her legs go (the pain in her leg is another saga of epic proportions).
We humans seek extraordinary events to reaffirm our existence. But it is in the ordinary things in everyday life that me and my house have come to appreciate these days. A simple meal cooked in our own kitchen; our own bed at home; our own bathroom; our own telly; and a transient stay of the beautiful maple leaves coming out in spring to grace our tree.
For those of you who have sent us prayers and wishes, came with food, books, toys and games for Princess of the House, our most humble thanks. And to the nurses at ward 25a, 26B, our liver nurses, the other magicians from the Gastro team - you all are very special! We are looking forward to more ordinary days!
Showing posts with label Starship. Show all posts
Showing posts with label Starship. Show all posts
Monday, September 29, 2008
Sunday, September 28, 2008
Road to damnation – racial politics
I am anti anything drawn along racial lines. The more I think about it, the more toxic I think racial bias is. Asians (or should I say, the Chinese) are brought up to identify with the “superiority” of their culture. History tells us that the Chinese already considered themselves a superior civilisation while the West still lived in the dark ages.
It doesn’t take long to see how flawed the notion of race superiority is. I have been trying to shed my own ethnocentricity for years, but it is not easy. Being married to a pakeha (white) and having a half-Asian-half-pakeha (white) daughter, I am reminded daily of how my racial/ethnic background dictates how I live, view the world and think.
Being brought up in a small town, it was definitely difficult getting away from the great racial divide where schoolyard jokes like these are common: “If you meet a cobra and an Indian along the road, who do you kill first?” (Answer: The Indian, because he can be more potent than a cobra), or “why did the Jews spend 40 years wandering in the desert? (Answer: “Somebody lost a quarter!”).
Hubby tells me all the time that “you Chinese are the most racist lot on earth.” I protest every time, for the sheer dramatic effect that results. But I tend to agree with him.
Devils, devils
Growing up in Malaysia, I often wonder why in colloquial-speak, the Cantonese Chinese call the Indians kee-ling kwai or Indian devils; they call the Malays, Malai kwai – Malay devil; and the Anglo-Saxon hung-mo kwai (red haired devil). Naturally, everyone else is a devil but the Cantonese Chinese.
It is human nature to fear what we don’t understand. It is human to draw simple conclusions based on our immediate experiences. It is also human to make errors in judgments, until we are shown the light or choose to see otherwise.
I rarely encounter personal episodes of racism although I have lived in Canada for 5 years, and have been in NZ seen 1997. It must be because I don’t allow myself (anymore) to sink into that thought pattern of seeing me as a target for racial discrimination.
I was tickled by how NotPC’s blog readers got into verbal fistfights (this is based on a my interpretation of the trail of "conversations") on his blog on the subject of unsafe dairy products from China (original post from me). Somehow, the discussion took a tangent of its own based on a cheeky remark on racial stereotypes. Race debates can make people’s blood curdle, boil and erupt.
Growing up, I used to threaten mom, saying I will marry an Indian one day. Why not? I love Indian food, I love Indian music. Then, I used to threaten that I would marry a Malay. Why not? Malay men are gracious, gentle and dress better than most of the Chinese men I know. Mom would have loved for me to dutifully marry a Chinese.
I decided sometime ago that I would be against anything grouped along racial lines. Therefore, I am anti race-based parties (such as the Maori party in New Zealand). I am against Peter Low’s Asian Anti-Crime Group in Auckland (although I admire his effort to help others fight crime). Crime in Auckland is not confined to Asians. The solutions should not be addressed by Asians choosing to protect their own.
I hope in this lifetime, I would see the disintegration in my former homeland of all race-based political parties – the MCA (Malaysian Chinese Association), MIC (Malaysian Indian Congress) and UMNO (United Malay National Organisation).
I hope, in this lifetime, Malaysian politics will be defined by ideologies and aspirations, not by myopic concerns built along the colour of one’s skin.
May13 and the flat earth
Raja Petra Kamarudin, a Malaysian blogger(now in detention under the Internal Security Act) posted a blog about May 13, 1969 (parts 1, 2 and 3) a while ago. His version of how race riots erupted is one that I have heard years ago. May 13 happened when I was 7. Every Chinese family knows Dato Harun as a dirty name.
For the longest time, it wasn't wise to discuss May 13.
I never use to view my Malay friends through a different looking glass. Not until I was told Malays have privileges that I don’t. Then I saw how different I was to them, and felt differnt. In primary school, I had a best friend, who is Malay, called Zubaidah.
What has changed since May 13, 1969? Nothing. Racial tension is at very high voltages in Malaysia at the moment. There is a threat of outage.
But what has changed is the world is “flatter” today. Blogsphere has given the average Malaysian a voice he/she didn’t use to have.
Malaysians, I think, are sick and tired of being taken on a ride that leads to the heart of darkness -- it is a journey of perpetual hatred, suspicion, jealousy, and discrimination.
A sort of change is edging its way over the Malaysian landscape. It remains to be seen whether the Malays, Chinese and Indians can shed their narrow racial concerns to work towards a new social contract -- one that opens up real possibilities for national healing, and for redemption of the lost 40 years.
Princess of the House
By the way, Princess of the House and her friends participating in the Maori cultural group did sensationally well last Thursday. The kids at school had a sampling of the beauty of cultural diversity. Princess is now gearing up for a friend’s birthday party, and practicing a Chris Brown song on the piano. Tomorrow, we check into "Hotel" Starship for the surgeon to take a peek at the strictures in her bile duct/and how the stents are doing.
It doesn’t take long to see how flawed the notion of race superiority is. I have been trying to shed my own ethnocentricity for years, but it is not easy. Being married to a pakeha (white) and having a half-Asian-half-pakeha (white) daughter, I am reminded daily of how my racial/ethnic background dictates how I live, view the world and think.
Being brought up in a small town, it was definitely difficult getting away from the great racial divide where schoolyard jokes like these are common: “If you meet a cobra and an Indian along the road, who do you kill first?” (Answer: The Indian, because he can be more potent than a cobra), or “why did the Jews spend 40 years wandering in the desert? (Answer: “Somebody lost a quarter!”).
Hubby tells me all the time that “you Chinese are the most racist lot on earth.” I protest every time, for the sheer dramatic effect that results. But I tend to agree with him.
Devils, devils
Growing up in Malaysia, I often wonder why in colloquial-speak, the Cantonese Chinese call the Indians kee-ling kwai or Indian devils; they call the Malays, Malai kwai – Malay devil; and the Anglo-Saxon hung-mo kwai (red haired devil). Naturally, everyone else is a devil but the Cantonese Chinese.
It is human nature to fear what we don’t understand. It is human to draw simple conclusions based on our immediate experiences. It is also human to make errors in judgments, until we are shown the light or choose to see otherwise.
I rarely encounter personal episodes of racism although I have lived in Canada for 5 years, and have been in NZ seen 1997. It must be because I don’t allow myself (anymore) to sink into that thought pattern of seeing me as a target for racial discrimination.
I was tickled by how NotPC’s blog readers got into verbal fistfights (this is based on a my interpretation of the trail of "conversations") on his blog on the subject of unsafe dairy products from China (original post from me). Somehow, the discussion took a tangent of its own based on a cheeky remark on racial stereotypes. Race debates can make people’s blood curdle, boil and erupt.
Growing up, I used to threaten mom, saying I will marry an Indian one day. Why not? I love Indian food, I love Indian music. Then, I used to threaten that I would marry a Malay. Why not? Malay men are gracious, gentle and dress better than most of the Chinese men I know. Mom would have loved for me to dutifully marry a Chinese.
I decided sometime ago that I would be against anything grouped along racial lines. Therefore, I am anti race-based parties (such as the Maori party in New Zealand). I am against Peter Low’s Asian Anti-Crime Group in Auckland (although I admire his effort to help others fight crime). Crime in Auckland is not confined to Asians. The solutions should not be addressed by Asians choosing to protect their own.
I hope in this lifetime, I would see the disintegration in my former homeland of all race-based political parties – the MCA (Malaysian Chinese Association), MIC (Malaysian Indian Congress) and UMNO (United Malay National Organisation).
I hope, in this lifetime, Malaysian politics will be defined by ideologies and aspirations, not by myopic concerns built along the colour of one’s skin.
May13 and the flat earth
Raja Petra Kamarudin, a Malaysian blogger(now in detention under the Internal Security Act) posted a blog about May 13, 1969 (parts 1, 2 and 3) a while ago. His version of how race riots erupted is one that I have heard years ago. May 13 happened when I was 7. Every Chinese family knows Dato Harun as a dirty name.
For the longest time, it wasn't wise to discuss May 13.
I never use to view my Malay friends through a different looking glass. Not until I was told Malays have privileges that I don’t. Then I saw how different I was to them, and felt differnt. In primary school, I had a best friend, who is Malay, called Zubaidah.
What has changed since May 13, 1969? Nothing. Racial tension is at very high voltages in Malaysia at the moment. There is a threat of outage.
But what has changed is the world is “flatter” today. Blogsphere has given the average Malaysian a voice he/she didn’t use to have.
Malaysians, I think, are sick and tired of being taken on a ride that leads to the heart of darkness -- it is a journey of perpetual hatred, suspicion, jealousy, and discrimination.
A sort of change is edging its way over the Malaysian landscape. It remains to be seen whether the Malays, Chinese and Indians can shed their narrow racial concerns to work towards a new social contract -- one that opens up real possibilities for national healing, and for redemption of the lost 40 years.
Princess of the House
By the way, Princess of the House and her friends participating in the Maori cultural group did sensationally well last Thursday. The kids at school had a sampling of the beauty of cultural diversity. Princess is now gearing up for a friend’s birthday party, and practicing a Chris Brown song on the piano. Tomorrow, we check into "Hotel" Starship for the surgeon to take a peek at the strictures in her bile duct/and how the stents are doing.
Tuesday, September 23, 2008
Cancer - the dirty word
Cancer is a dirty word, well at least to me. We went to my cousin’s wedding and hubby discovered a lump under Princess of the House’s arm. We took her to our GP. The GP thought it wasn’t serious. He suggested we wait to see what happened. My friend at work, BY, (I have her to thank!), told me in no uncertain terms, I had to seek a second opinion, and gave me her pediatrician’s name. The rest, like they say, is history. That was when Princess was 2.5 years old. She is now 10.
At 4.5 years old, Princess had acute liver failure. We found a liver match at the 11th hour. We were lucky. Others are not so. But near midnight on the day of Princess’ transplant, we had a call from hospital. It didn’t sound good.
Stephen Munn, our surgeon, told us when they cut Princess up, they found cancer in a few places. They suspended the surgery for a while (45 minutes was it? I can’t remember). But after consultations with the best around the world, Dr Munn said (and I will never forget Dr Munn’s words) they decided to go ahead with the liver transplant as cancer is “an imminently treatable” disease. This has been my amulet for a long time now “an imminently treatable disease”. That should be ever cancer parent’s amulet, I reckon.
We have never personally thanked Dr Munn for making the professional decision he and his team made. But he knows -- probably from years in the trade that patients or parents never truly show their gratitude. Why is there need for words when we eat it, drink it, walk it, and live it everyday our Princess is alive.
Cancer – many lives
The cancer saga didn’t end there. Post transplant, when her new liver was thriving, we found cancer lurking again, inside Princess.
Cancer is an insidious disease. It creeps and takes over, when you least expect it. It can be wiped out and killed. But it reincarnates often, like a cat not with nine but a thousand lives. Lucky for Princess, the drugs are getting better. We had had Rituximab in our last treatment, a kind of missile drug, that targets the cancer cells rather than destroy all cells in the body indiscriminately. The first treatment protocol used in Singapore was CHOPP (a cocktail of different drugs, used in chemotheraphy). That was the chemo with its side effects – nausea, hair loss, weight gain (from prednisone, a steroid), constipation. Not wonderful.
World Lymphoma Day
I found out from the NZ Listener magazine that Sept 15 is World Lymphoma Awareness Day (WLAD). How uncanny. Hubby’s birthday is Sept 14th.
Now I will never forget WLAD now! I am not a very scientific person so I find it hard to follow all the different scientific bits of cancer. But I know Princess had Hodgkins, the slow-growing form. It took them a while at the National University Hospital to get a conclusive reading on whether it was Hodgkins or non-Hodgkins lymphoma (NHL). The differences are very fine, even under super microscopes.
Non-Hodgkins is the one deemed a faster growing cancer. The difference between the two types of lymphoma is based on what type of predominant “bad” cells they find in the “diseased” location, T-cells or B-cells and much more.
I haven’t looked very closely at what a cancerous cell looks like, but I have seen what they have shown on House -- under the microscope, cancer cells look like little colonisers – definitely aggression personified. They give you the goosebumps when you look at them because you know their capacity to render you powerless, like an imperialist master over your body, the colony.
These are some facts I have since found:
In NZ, lymphoma (since the source is not specific, am assuming it refers to both Hodgkins and NHL) is the sixth most common cancer in the country affecting about 800 people every year. Certain types of lymphoma can kill in as little as six months.
There has been a 30 percent rise in lymphoma in NZ over the past five years and this is projected to rise further.
What’s scary is most of the people surveyed think symptoms of lymphoma are just signs of flu. Some 89 percent of 501 people surveyed in NZ could not correctly identify that lymphoma was a cancer of the lymphatic system and 94 per cent did not list lymphoma in the top of their mind as cancers. Only 2 percent could recognise the symptoms.
Lymph nodes are like your body’s ammunition against infections. They are the size of a jelly bean (about 1 cm) and when they are in battle mode, they become enlarged.
Princess of the House had a node the size of a ping pong ball under her arm. No other symptoms that I can recall. Other major hubs for your nodes are your neck, armpit and groin. So never ignore those lumps. Other symptoms are: night sweats, persistent fevers, rapid weight loss, trouble breathing, chest pains, weakness and tiredness for longer than two weeks.
The not-so-bad news is the success rate for lymphoma cancer treatments is about 75 percent, according to one report.
US stats
In the US, NHL is the 5th most frequently diagnosed cancer in the US. More than 66,000 new cases of NHL are expected in the US this year (close to 35,500 males and 30,700 females). (Sourced from Genetech). Of the estimated 360,000 Americans living with NHL, about 30 percent have diffuse large B-cell lymphoma and approximately 30 percent have low-grade lymphoma.
You can get very deep into the subject. There are something like over 40 different manifestations of lymphoma.
Hubby’s sister
Darling Aunty, my hubby’s sister, is dying from brain cancer; NHL, it is. The kind that spreads fast and furious, like a wild fire. She had it in her kidneys, they killed it. The cancer reinvented itself in her brain, taking over her body – her new master. We are staring at death, very up close and personal.
Princess of the House had just had 2 months in hospital, a narrowing in her bile ducts. The wizards at Startship’s Gastroenterology are doing their best to keep the bile ducts stretched, with a stent. It stays in there till the ducts are wide enough for bile to pass through without clogging up. We are waiting, waiting. We have faith in these Gastro folks. They are the best in the world, they are our Merlins.
Now Princess has unexplained pains at the back of her right ankle. After every imaginable scan and biopsy one can expect, her ankle is still hurting. She now wears a "moonboot" to keep her ankle from being stressed too much. Is there cancer lurking somewhere in the nether regions of ber body? Our oncologist gave us the clear recently, no cancer, she says. The PET (Positron emission tomography: a type of scan where radioactive material is injected into your body to tract cancer/blood flow etc in the body) scan we did on Princess in Melbourne in June gave us the clear. Yet, we never relax. We can never relax.
Truth of suffering
Sometimes, I throw all these vestiges of fear or nightmares at the back of my mind, deep, deep at the back where I can easily snuff out every trace of it. It is easier to forget. Recall takes courage, real courage.
Then, this week, I heard from a dear old friend of cancer in his family. Lymphoma as well. We all have our nightmares to deal with. We all try our best to bury these nightmares and walk tall, relying on their inner resource to face the day. My concerns become imminently less important when I focus on other people’s suffering.
I see the boy in a wheelchair in hospital school with no arms, no legs; and he is using his little “bit of stump” to throw the dice in a game he was playing. No fuss. Just getting on with his game. He is a hero to me now. I talk to our liver nurse (a mom with a kid who had cancer and now in remission) who has to face sick kids waiting for a liver against the clock ticking. She becomes my reminder of what courage is - to face everyday with inspiration - to go out and do the best we can.
What is real is suffering is universal; not exclusive to me. How we choose to respond makes the difference.
Tomorrow, we hope to escape Starship as Princess’ fever has subsided.
Tomorrow, Princess -- wrapped in a beautifully hand-painted dress with koru design done by her best mate’s mom (Kororia take a bow) -- will sing with over 30 other kids several Maori songs – songs that celebrate bravery, fierceness, courage, warmth, love and friendship.
Useful sites on lymphoma
Leukemia and Blood Foundation NZ
Lymphoma Research Foundation
New York Online Access to Health
At 4.5 years old, Princess had acute liver failure. We found a liver match at the 11th hour. We were lucky. Others are not so. But near midnight on the day of Princess’ transplant, we had a call from hospital. It didn’t sound good.
Stephen Munn, our surgeon, told us when they cut Princess up, they found cancer in a few places. They suspended the surgery for a while (45 minutes was it? I can’t remember). But after consultations with the best around the world, Dr Munn said (and I will never forget Dr Munn’s words) they decided to go ahead with the liver transplant as cancer is “an imminently treatable” disease. This has been my amulet for a long time now “an imminently treatable disease”. That should be ever cancer parent’s amulet, I reckon.
We have never personally thanked Dr Munn for making the professional decision he and his team made. But he knows -- probably from years in the trade that patients or parents never truly show their gratitude. Why is there need for words when we eat it, drink it, walk it, and live it everyday our Princess is alive.
Cancer – many lives
The cancer saga didn’t end there. Post transplant, when her new liver was thriving, we found cancer lurking again, inside Princess.
Cancer is an insidious disease. It creeps and takes over, when you least expect it. It can be wiped out and killed. But it reincarnates often, like a cat not with nine but a thousand lives. Lucky for Princess, the drugs are getting better. We had had Rituximab in our last treatment, a kind of missile drug, that targets the cancer cells rather than destroy all cells in the body indiscriminately. The first treatment protocol used in Singapore was CHOPP (a cocktail of different drugs, used in chemotheraphy). That was the chemo with its side effects – nausea, hair loss, weight gain (from prednisone, a steroid), constipation. Not wonderful.
World Lymphoma Day
I found out from the NZ Listener magazine that Sept 15 is World Lymphoma Awareness Day (WLAD). How uncanny. Hubby’s birthday is Sept 14th.
Now I will never forget WLAD now! I am not a very scientific person so I find it hard to follow all the different scientific bits of cancer. But I know Princess had Hodgkins, the slow-growing form. It took them a while at the National University Hospital to get a conclusive reading on whether it was Hodgkins or non-Hodgkins lymphoma (NHL). The differences are very fine, even under super microscopes.
Non-Hodgkins is the one deemed a faster growing cancer. The difference between the two types of lymphoma is based on what type of predominant “bad” cells they find in the “diseased” location, T-cells or B-cells and much more.
I haven’t looked very closely at what a cancerous cell looks like, but I have seen what they have shown on House -- under the microscope, cancer cells look like little colonisers – definitely aggression personified. They give you the goosebumps when you look at them because you know their capacity to render you powerless, like an imperialist master over your body, the colony.
These are some facts I have since found:
In NZ, lymphoma (since the source is not specific, am assuming it refers to both Hodgkins and NHL) is the sixth most common cancer in the country affecting about 800 people every year. Certain types of lymphoma can kill in as little as six months.
There has been a 30 percent rise in lymphoma in NZ over the past five years and this is projected to rise further.
What’s scary is most of the people surveyed think symptoms of lymphoma are just signs of flu. Some 89 percent of 501 people surveyed in NZ could not correctly identify that lymphoma was a cancer of the lymphatic system and 94 per cent did not list lymphoma in the top of their mind as cancers. Only 2 percent could recognise the symptoms.
Lymph nodes are like your body’s ammunition against infections. They are the size of a jelly bean (about 1 cm) and when they are in battle mode, they become enlarged.
Princess of the House had a node the size of a ping pong ball under her arm. No other symptoms that I can recall. Other major hubs for your nodes are your neck, armpit and groin. So never ignore those lumps. Other symptoms are: night sweats, persistent fevers, rapid weight loss, trouble breathing, chest pains, weakness and tiredness for longer than two weeks.
The not-so-bad news is the success rate for lymphoma cancer treatments is about 75 percent, according to one report.
US stats
In the US, NHL is the 5th most frequently diagnosed cancer in the US. More than 66,000 new cases of NHL are expected in the US this year (close to 35,500 males and 30,700 females). (Sourced from Genetech). Of the estimated 360,000 Americans living with NHL, about 30 percent have diffuse large B-cell lymphoma and approximately 30 percent have low-grade lymphoma.
You can get very deep into the subject. There are something like over 40 different manifestations of lymphoma.
Hubby’s sister
Darling Aunty, my hubby’s sister, is dying from brain cancer; NHL, it is. The kind that spreads fast and furious, like a wild fire. She had it in her kidneys, they killed it. The cancer reinvented itself in her brain, taking over her body – her new master. We are staring at death, very up close and personal.
Princess of the House had just had 2 months in hospital, a narrowing in her bile ducts. The wizards at Startship’s Gastroenterology are doing their best to keep the bile ducts stretched, with a stent. It stays in there till the ducts are wide enough for bile to pass through without clogging up. We are waiting, waiting. We have faith in these Gastro folks. They are the best in the world, they are our Merlins.
Now Princess has unexplained pains at the back of her right ankle. After every imaginable scan and biopsy one can expect, her ankle is still hurting. She now wears a "moonboot" to keep her ankle from being stressed too much. Is there cancer lurking somewhere in the nether regions of ber body? Our oncologist gave us the clear recently, no cancer, she says. The PET (Positron emission tomography: a type of scan where radioactive material is injected into your body to tract cancer/blood flow etc in the body) scan we did on Princess in Melbourne in June gave us the clear. Yet, we never relax. We can never relax.
Truth of suffering
Sometimes, I throw all these vestiges of fear or nightmares at the back of my mind, deep, deep at the back where I can easily snuff out every trace of it. It is easier to forget. Recall takes courage, real courage.
Then, this week, I heard from a dear old friend of cancer in his family. Lymphoma as well. We all have our nightmares to deal with. We all try our best to bury these nightmares and walk tall, relying on their inner resource to face the day. My concerns become imminently less important when I focus on other people’s suffering.
I see the boy in a wheelchair in hospital school with no arms, no legs; and he is using his little “bit of stump” to throw the dice in a game he was playing. No fuss. Just getting on with his game. He is a hero to me now. I talk to our liver nurse (a mom with a kid who had cancer and now in remission) who has to face sick kids waiting for a liver against the clock ticking. She becomes my reminder of what courage is - to face everyday with inspiration - to go out and do the best we can.
What is real is suffering is universal; not exclusive to me. How we choose to respond makes the difference.
Tomorrow, we hope to escape Starship as Princess’ fever has subsided.
Tomorrow, Princess -- wrapped in a beautifully hand-painted dress with koru design done by her best mate’s mom (Kororia take a bow) -- will sing with over 30 other kids several Maori songs – songs that celebrate bravery, fierceness, courage, warmth, love and friendship.
Useful sites on lymphoma
Leukemia and Blood Foundation NZ
Lymphoma Research Foundation
New York Online Access to Health
Tuesday, September 9, 2008
This season of our despair, next season of light
It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way--in short, the period was so far like the present period…Charles Dickens – Tale of Two Cities
Dickensque
It was the best of times, it was the worst of times…it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair. For our family and friends, the last half year has been every bit as Dickensque as you can imagine. A Darling Aunty dying from brain tumour, a child (post-liver transplant) suffering from relapse of bile duct narrowing. Princess of the House (our daughter Julia) spent 8 weeks in hospital sorting out her bile duct problems. She still wears a tube, hanging from the top of her belly like a weird extension (in case the surgeons need access).
This April just past was the worst of times for us. Darling Aunty got diagnosed with brain cancer. This June past, was the worst of times, Princess of the House got very sick. The worst of times because for the longest time in these very sultry winter months, the doctors were looking for clues of whether Princess of the House was having a relapse of her childhood cancer. We had a heavy block dropped off our backs on Monday results from a PET scan in Melbourne showed all is well on the cancer front for Princess.
Lessons
What the last 5 months-plus has taught me is that the worst of times, can also be the best of times. It was the best of times because I have seen much greatness and professionalism among our care gives (read Liver Transplant nurses, nurses at Ward 25A, the mostly-bald headed Gastroenterology guys at Starship Hospital (well pardon me, including one impeccably dressed lady consultant with accessories to die for); Northern Hospital School teachers – hear the gong folks!).
It was the best of times because we learnt that humans cope despite great adversities. We wake in the morning, hoping it will be a better day, that the sun will still rise as it surely does. We wake up knowing our friends and family are there for us. We wake up hoping the Boffins and their friends (read people of science) may have some answers for us; that we will be one step closer to the end of the dark tunnel, closer to some answers.
The answers may not be what we desire to hear. Our Darling Aunty has been given months to live. We enter the realm of incredulity, the season of darkness; we sink into the winter of despair.
But these can be the best of times for us – because we learn to grow as humans, to see this as the time to seize the day, to live life with no regrets, to show kindness; to exercise compassion, to learn tolerance as a way of life, and say the prayers we never seem to find it easy to say. This is the time to feel the frailty of human life.
These can be the best of times as we learn to greet death in its gruesome face with as much surety as we greet the transcendence of the beautiful rising sun. That because instinctively we seek to live, we surely also, must by the same logic, have to seek to let go when that time comes.
Magical cat
There is a certain cartoon character – a pudgy blue robot cat which speaks with a mechanical human voice called Doraemon (Pico Iyer's version of the cat) – which I love. Doraemon always has a solution, something he can pull out of his magical pouch. Miraculous feats happen in Doraemon’s presence. Pipping hot ramen in bowls for Nobita and his friends atop a gigantic tree with vistas as wide as the eyes can see. How I wish Doraemon could produce a magical pill for Darling Aunty.
However, there is nothing magical to be found by way of how science takes it own pace to develop – not fast enough for Darling Aunty, I am afraid.
Season of light
So as surely as one accepts the rising sun must set, the time must come when we will have to let death come into our doors. For in dying, there is new life. In new life, springs the shoots that gives hope.
For now, for those who are grieving, our singular most important lesson must be that what keeps our daily life much more bearable is that spring of hope – that tomorrow will be a brighter day. That once we learn to let go gently, at our own pace - tomorrow, yesterday, the day before, last year and all of days, need not be the winter of our despair, but the season of new light.
Dickensque
It was the best of times, it was the worst of times…it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair. For our family and friends, the last half year has been every bit as Dickensque as you can imagine. A Darling Aunty dying from brain tumour, a child (post-liver transplant) suffering from relapse of bile duct narrowing. Princess of the House (our daughter Julia) spent 8 weeks in hospital sorting out her bile duct problems. She still wears a tube, hanging from the top of her belly like a weird extension (in case the surgeons need access).
This April just past was the worst of times for us. Darling Aunty got diagnosed with brain cancer. This June past, was the worst of times, Princess of the House got very sick. The worst of times because for the longest time in these very sultry winter months, the doctors were looking for clues of whether Princess of the House was having a relapse of her childhood cancer. We had a heavy block dropped off our backs on Monday results from a PET scan in Melbourne showed all is well on the cancer front for Princess.
Lessons
What the last 5 months-plus has taught me is that the worst of times, can also be the best of times. It was the best of times because I have seen much greatness and professionalism among our care gives (read Liver Transplant nurses, nurses at Ward 25A, the mostly-bald headed Gastroenterology guys at Starship Hospital (well pardon me, including one impeccably dressed lady consultant with accessories to die for); Northern Hospital School teachers – hear the gong folks!).
It was the best of times because we learnt that humans cope despite great adversities. We wake in the morning, hoping it will be a better day, that the sun will still rise as it surely does. We wake up knowing our friends and family are there for us. We wake up hoping the Boffins and their friends (read people of science) may have some answers for us; that we will be one step closer to the end of the dark tunnel, closer to some answers.
The answers may not be what we desire to hear. Our Darling Aunty has been given months to live. We enter the realm of incredulity, the season of darkness; we sink into the winter of despair.
But these can be the best of times for us – because we learn to grow as humans, to see this as the time to seize the day, to live life with no regrets, to show kindness; to exercise compassion, to learn tolerance as a way of life, and say the prayers we never seem to find it easy to say. This is the time to feel the frailty of human life.
These can be the best of times as we learn to greet death in its gruesome face with as much surety as we greet the transcendence of the beautiful rising sun. That because instinctively we seek to live, we surely also, must by the same logic, have to seek to let go when that time comes.
Magical cat
There is a certain cartoon character – a pudgy blue robot cat which speaks with a mechanical human voice called Doraemon (Pico Iyer's version of the cat) – which I love. Doraemon always has a solution, something he can pull out of his magical pouch. Miraculous feats happen in Doraemon’s presence. Pipping hot ramen in bowls for Nobita and his friends atop a gigantic tree with vistas as wide as the eyes can see. How I wish Doraemon could produce a magical pill for Darling Aunty.
However, there is nothing magical to be found by way of how science takes it own pace to develop – not fast enough for Darling Aunty, I am afraid.
Season of light
So as surely as one accepts the rising sun must set, the time must come when we will have to let death come into our doors. For in dying, there is new life. In new life, springs the shoots that gives hope.
For now, for those who are grieving, our singular most important lesson must be that what keeps our daily life much more bearable is that spring of hope – that tomorrow will be a brighter day. That once we learn to let go gently, at our own pace - tomorrow, yesterday, the day before, last year and all of days, need not be the winter of our despair, but the season of new light.
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