– Bilingual Lyrics Chinese/English

Lyrics & Translation

[English]

Hello everyone

I am Brother Zhu

I am an ordinary person who records his life truly and completely on the Internet

...

I have a mantra called

One minute

Every time I am late

I will preemptively tell others

One minute Traffic jam

Or every time a client has a conference call

He asked a question that I didn't know how to answer

I mute myself immediately

I said one minute

Sometimes I don't like to answer other people's calls

I will put the phone down and say

Wait for me a minute

But I will never call back

Because before I was 28 years old, I

regarded my time as an asset

A resource

Something that must be managed and allocated efficiently

I don't allow anyone to waste my time

As an East Asian volume king

As a time management master

It seems that my understanding of time

suddenly broke in 2018

when I was 28 years old

suddenly broke

One morning at work in October

I was on the 8:30 rush

on the subway from Nanjing East Road to Lujiazui

Suddenly I received a call from the hospital

telling me that I had been diagnosed with cancer

and asking me to go to the hospital immediately

So on that working day morning

on October 18, 2018

I was diagnosed with an advanced blood tumor

and it was found to be in the advanced stage

Invasion of bone marrow

Unable to be cured

At that moment

I felt

I didn’t have to fight for the last minute call at 9 o’clock

Because my time was directly folded in half

I am only 28 years old

Walking in the hospital

The very long corridor of Zhongshan Hospital

I seemed to have an hallucination

This illusion was turned into reality by the report in front of me

You can take a look at my report

This examination is called PET-CT

Under PET-CT

It can see the distribution of tumors throughout your body

The black part is the distribution of my tumors

You can see how late I was when I discovered it

I had pleural effusion

Abdominal effusion

Pelvic effusion

The tumor infiltrated all my organs

Even the heart

Lymphoma is a very special type of blood tumor

Because there are 800 lymph nodes in the human body

You can say wherever the blood flows

Cancer can develop

Walking in the corridor of Zhongshan Hospital

It was a Monday afternoon

In theory, any normal company

It seemed that I should have been in a meeting that afternoon

and I was just wandering in the corridor waiting

At that time, I felt like a black hole of time

It suddenly gave me a different understanding of time

The understanding of time seemed to be divided into three dimensions

The first time is medical time

Medical time is the time that the doctor told me

He will analyze my condition

I decided on a treatment plan

He would say based on your current condition

What kind of plan do you take

You may be able to get a PFS

which is the progression-free survival period

If you continue to implement it

Maybe what is the probability that you will live to the 5-year survival period

The second time dimension is social time

I believe everyone is familiar with the feeling of this social clock

For example, I am 35 years old now

It seems that there should be an anchor position in society

It belongs to me

A 35-year-old person

He should have a house, a car and a child

He should even be a middle-level person in a small and medium-sized enterprise

Not optimized by big companies

After 35 years old, my resume will not be seen by HR

The third newly created time dimension is subjective time

I actually had this feeling of subjective time in the hospital

Subjective time is you here and now

How you feel about time

Is this time long or short

Is it fast or slow

Is it good or bad

Is it passing or stagnant

With this confusion of time

I found that as the treatment started

I can't plan my time

Because it was diagnosed too late

I don't know how long I will need treatment

Can it be cured

How long will it take to relapse after being cured

How long can I live if I relapse

Everything is derailed

Nothing can be planned

At the same time, I also completely fell out of the mainstream sequence

The feeling of losing control of time is like a skating rink

All the people around me

All my colleagues and classmates

We are all on this skating rink

Skating round and round

But I was the only one who kept falling

Keep falling in place

Unable to stand up

Out of the confusion of the mainstream sequence

I started to search online

I especially wanted to know

How others live like me

Others have cancer

How do they live their daily lives

For example, how are they treated?

For example, during the treatment process

What physical and mental pain they experienced

For example, what did the cured patients do afterwards

Where did they go

Did the illness affect their lives

For example, those patients who could not be cured

Why they could not be cured

What sins they suffered later

And if they were really unfortunate

Incurable disease

Unable to be treated

Going to death without any possibility of improvement

How long did it take to move towards death

What difficulties did it encounter

At that time point in 2018

I found that all I searched online were

nodal concepts about cancer

There were only three nodes

The first node was who you heard had cancer

The second node is which celebrity did you hear about

Cancer was successfully cured

The third node is when you suddenly saw an obituary (fu)

Who died of cancer

Passed away due to ineffective treatment

There is no process in between

So when I was going through this anti-cancer process, I thought to myself

Since no one has written it

I will record it

Anyway, I am going through this thing

It’s okay to stay idle in the hospital anyway

I was 28 years old at the time

After completing the first chemotherapy

I was very uncomfortable

I tossed and turned when I got home

Then I started thinking about very ultimate questions

These two ultimate questions are

After ordinary people get cancer

Can I still live a dazzling life

What possibilities are left in life

The second ultimate question is

If late-stage cancer cannot be cured

Then I can only wait for death in pain

With these two ultimate inquiries

I started my journey of recording

So I wrote an article after the first chemotherapy

It's called "The Mind Mapping Self-Help Guide for 28-Year-Old Financial Women in Shanghai"

I can't say that this article has received rave reviews from everyone.

Everyone says that I am a young white-collar worker who is stupid at writing PPTs. So I wrote my own diagnosis experience

...

...

...

...

...

into a 10,000-word long article

In this 10,000-word long article,

recorded my journey in detail

from feeling the facts

...

I even drew a

big mind map with 140 items

just like planning my own project

not only has a very programmatic part

I wrote the overall principles one, two, three and four

There are also rigid parts

Flexible parts

There are also specific to do

The responsibility is assigned to the person

Even the file name is there

This article was published in 2018

It became a hit article with tens of millions of reads on the entire network

Before that, my official account only had 9 people following it

I never thought that

as a niche internet name like Zhuzige

I would become an anti-cancer blogger

As this article attracted much attention

Then I seemed to think

Can I really follow this guide

Just follow my own planning and plan

Treat cancer as a problem that can be solved

Matters that can be defined

And projects that can be carefully planned and executed

So I really did it

Writing articles while undergoing treatment

Because I stayed in the hospital for too long

Waiting for six or seven hours for a random examination

Waiting for six or seven hours for a specialist clinic

Waiting for the doctor's rounds for seven or eight hours a day

There is really nothing to do

So I became a human observer of the hospital

I observed many small-town patients who came to the hospital to see specialists with CT films from the county

In fact, they were completely unfamiliar with big hospitals

...

Shanghai's tertiary hospitals were too complicated for them

I also observed those patients who came from small cities

and were reluctant to live near the hospital

and could not completely arrange their own itinerary for medical treatment

I also observed that many people don’t understand how to register for medical insurance in another place

How to maximize the optimization and use of the money they have

So based on my observations

I started to write some so-called knowledge-based anti-cancer experience sharing

They are what I call guides and strategies.

Maybe many people have read it

I started writing basically 10,000-word long articles

"How Ordinary People Fight the Economic Toxicity of Serious Illnesses"

"Anti-cancer Self-help Guide for Small Town Cancer Patients"

and "How to Ask Doctors More Efficiently"

Later I stayed in the hematology department for a long time

Half of the patients in our hematology department are actually the elderly

Most of these elderly people are actually

They don’t know what disease they have

and they can’t communicate well with the doctor

Their children won’t talk too deeply with him

They don’t know how to surf the Internet

So they actually have no place to talk and tell

their own needs and feelings

So I came up with this series about observing aging

I became friends with many of my elderly patients in the hospital

Later, I went to study for a junior college in geriatric nursing

specifically to understand, observe and record

the needs of these elderly patients

Just like this, I wrote two public accounts

kept outputting hard-core science popularization

and it seemed to be true

I also continued to do the questions and PPTs

I discovered

behind every hard-core knowledge article I wrote

In fact, it is hundreds of life stories of cancer patients

and their families

They came to me not to seek knowledge and experience at all

They came to tell about their own

real difficulties in life

and their real situations

problems that they cannot talk to any outsiders

They thought I could understand

So I turned into a human-shaped tree hole

The treatment of my lymphoma was actually not smooth.

I relapsed within three months of the first treatment.

Because I had a type that is most likely to relapse.

With this type, it will continue to relapse and continue to be treated.

So I had two years

solidly in the hospital. For example, every time I go to the hospital to wait

...

...

...

...

when it is really uncomfortable

I am thinking that I am not here to see a doctor

I am not waiting here passively

I am a female writer

I am here to collect materials

I am here to collect stories

I am here to observe and record

I am here to write

This gives me a sense of initiative

Later, I wrote more and more articles

In two years, I even published a book

I held my new book launch conference in the hospital where I stayed for two years

Then I was very happy about these photos

I memorized them all

I think looking back, there are too many anchors for my memory

Every time I go out for a blood test, I wear a new outfit

Then I became an OOTD blogger

The kind of death anxiety I was facing at that time seemed

that I didn’t know what would happen if I lived

and I didn’t know what would happen if I died

They were all problems

Then I could only explore by myself

to explore what would happen next

Through these very small actions

I felt that my life was quite fulfilling

At the same time, I felt that my body had witnessed my past two years

Before I got sick, I was actually a very tall and thin

Lujiazui Baigujing image

Long hair down to the waist

Big waves

Two years later

I had too many chemotherapy treatments

Too many treatments

My body was riddled with holes

I went bald 4 times

It was after a major change in appearance that I became what I am now

Summarizing my two years

My mentality at the time was that I was so afraid of wasting my time

I didn’t go to work

You see others are making progress

Then me

What have I done in the past two years

I just want to have a sense of gain in every minute of my life

I want to make progress

A message will pop up on my phone every day saying

Every day must be accumulated effectively

So I really seemed to have gained two years

of particularly fulfilling and meaningful time

But my tumor is incurable

and will only keep relapsing

After two years of treatment

I know

I don’t know when it will relapse

and when the next recurrence will occur

Will I be able to be saved

How long can I live

I have to live with this uncertainty for the rest of my life

Then should I wait where I am

I ran to ask my attending doctor

I said I knew I couldn't be cured

So what else can I do to delay its occurrence

Then my attending doctor said

In fact, the best way for you to take care of yourself is not to go to work

Just take good care of yourself

You take care of yourself at home

You don’t have any pressure

Your body will get better

Cancer will be like a spring

If you press it there, it won’t rebound

But I am not this character

I feel that the two years of treatment have been too hard

I can't wait to be free

I did go to find freedom

However, because the previous two years were too fulfilling

The life of an anti-cancer blogger

I became a leading blogger in the field of anti-cancer

So famous

that I had to leave the primary market where I used to work

The way I started a new life was to leave my hometown

Change a country

Change an industry

Change a fancy name

Change a new identity

Change a new type of job

Start over

I went to work abroad

Friends, working overseas is really so happy

Just compare with the previous two years

That is when people come to Southeast Asia

I feel so happy

Why

Because Southeast Asia is a tropical country

Then it has no four seasons

Without four seasons, it will make me feel

as if I have lost consciousness of the passage of time

Then the weather is hot every day

I am a child from the Northeast

So after I arrived in a tropical country

I was so distracted every day

I started to slack off as a scroller

I started to lie down a little

I went out to play outside of work

This was when I was working in Indonesia

I went to Manado

Manado is a place where "The Ex-Raiders" was filmed

There is a very beautiful sea

All my friends went deep diving that day

They all dived tens of meters deep

But I was very afraid of water

So I refused to go down

Then my diving guide pulled me up

Just give it a try

You let your body relax for a minute

Just one minute

You sink and you go and feel it

There are turtles next to us

So I really went into the water to try

Then let yourself relax

Don't struggle

Don't be nervous

I found that when people sink into the water, they lose the sense of time

Then you will feel like you have become a fish

Swim with the turtles

In that way, I feel that I have passed the most wonderful minute in my life

...

And later I went to 10 countries

There are more wonderful minutes

I was so happy

I couldn't bear to go back to China

I thought that starting life again

The days of restarting my career

could last a long time

Until 2024

Last August

When I returned to China from Indonesia, it was very, very accidental

I was diagnosed with a second cancer

And it was the primary cancer

I came back to China because my good friends celebrated my birthday

Then we went to eat seafood hot pot

After I finished eating, I found that my stomach was bulging

The food never went down

So I went back to Zhongshan Hospital where I had been treated for two years

for a gastroscopy

I went for two days in a row

It was all because my food had been retained in my stomach

I can't do a gastroscopy

I can't have anesthesia

But I have to fly away on my flight the next day

Then I'm in the hospital

In the long corridor I'm familiar with countless times

Like a headless fly

The uncle who handed out the gastroscopy order said

Ah, we can't control that

You go find an anesthesiologist yourself

See who can do it for you

So I walked around like this

Until there was a nosy Northeast doctor

He was Dr. Fu Peiyao from the Endoscopy Department of Zhongshan Hospital

He took my order

He said what do you want to do

I said I wanted to do a gastroscopy

He looked at my situation

He said

This

I can only try for a minute

to see if you can get anesthesia

If you can't get anesthesia

You will have to do a painful gastroscopy

That will only last for three songs at most

Just get over it

Unfortunately

That minute decided that I really couldn't do anesthesia

So I lay there

with my face covered in snot

Face full of tears

Almost dismantled the bed

After three songs

I was diagnosed with the worst news in my life

Primary signet ring cell gastric cancer

King of Cancer

And the diagnosis was in the late stage

I got the report and walked to the corridor of Zhongshan Hospital

I really

Death is too close

This is a countdown in the true sense

At that moment I realized

My previous life as an anti-cancer blogger

The life where it was still curable

and the quality of life was good

is completely different from the real terminal stage of the tumor

The state of mind when I am really about to die

...

I am back in this familiar black hole of time and space again

This photo was taken on December 31 last year

The day before the Chinese New Year

At that time, I went through 4 months of treatment

2 unsuccessful laparotomies

I opened my belly and found

The tumor had spread throughout my abdominal and pelvic cavity

There was no way to cut it

Then the tumor continued to progress

I was sitting there basking in the sun.

I was warmed by the sun.

I even felt like I was melting.

I haven’t eaten for many days.

My mind was empty. There is no way to work

...

...

...

...

...

But at the same time outside the ward

The social clock

The time that others are passing is changing rapidly

That afternoon

All my colleagues and classmates

Everyone I know

Everyone is on vacation

Waiting for the New Year tomorrow

And at the same time, the irony is

I have very little time left to live

This picture may make everyone feel uncomfortable

I found that what I was imprisoned in the ward

was not only my time

but also my body

Four tubes

half a meter long and as thick as a finger were inserted into my belly at the same time

I also inserted a urinary catheter

I also inserted a gastric tube

Then the infusion port on my chest was connected to an infusion tube

Then a long needle was inserted into my spine

An external switch was installed

as a dural pain relief

I truly felt the immediate

death anxiety of being deprived of all time and possibility

I knew I couldn't be cured

and would get worse

I need to find a hospice ward quickly

In fact, I am no stranger to hospice care

In 2019, I started

to promote hospice care in Shanghai

I started as a volunteer

Later, after writing articles and gaining more experience

I became a lecturer in volunteer training

I have also trained many volunteers

Later, I became a public welfare figure

and have been advocating this matter

In 2020, I also wrote a complete guide to hospice care in Shanghai

But

I thought I knew so much about something that I advocated and respected

When I was so familiar

I found that the demand side opened up to me a

completely different perspective

I am not a doctor who comes to work 8 hours a day

I am not a nurse who works a 12-hour shift

I am not a volunteer who only comes to serve for one hour a week

I am the person who lies on that bed 24 hours a day

Then I felt something was wrong

I discovered the first problem while searching for a ward

One day I went to register

...

A hospice ward near my home

That ward is probably the most benchmark ward in Shanghai.

Then I think I have been there.

Let me volunteer again.

In fact, the service time for each ward

is only about 10 minutes per person.

But I found out that I was taking pictures the whole time.

...

...

...

Every moment when I applauded loudly and cheerfully

was videotaped

And at this time, the person I replaced

was no longer the person taking pictures and singing

I replaced the person who looked confused

No shower

No makeup

The person wearing a hospital gown

I just thought if I didn't have makeup

No shower

Sitting there

Do I want to be photographed

I also saw people in other corners of the ward

They looked more dull

No one seemed to have an opinion

Because everyone didn't eat much

I didn't have the energy to say anything

After finishing the volunteer service

A sister who was a volunteer at the time knew that I was Brother Zhu

came up and hugged me

She said Brother Zhuzi, it's not easy for you

You've worked too hard

Compared with you, my difficulties are nothing

My life is quite happy

Thank you

After listening to this sentence, I thought

I just don't know

It's very complicated

It sounds familiar

Then I recalled it

A sentence that often appears in my comment area

The sentence structure of this sentence is #{111 Brother Zhuzhu, your life is not easy

...

You are too hard

Compared with you, the difficulties in my life are nothing

I am quite happy

I want to cherish life more

Then I suddenly realized

It turns out that I have been an anti-cancer blogger for several years

It turned out to be a background for others to show help and sympathy

It turned out that I was the frame of reference for others' happiness

Soon I discovered the second problem

I found that I couldn't take a shower

My biggest pain point when I was in the hospital was

I was fixed there

I had too many tubes inserted into my body

But the hospital only wipes you

Then our hospital nurse took care of 8 patients by herself

I'm the youngest

So she picks me up at 4 a.m. every morning

She said do you want to wipe me

I said I won't go to bed until 2 o'clock

But I only have one chance a day

So I have to cooperate with her

What is the way she wipes me

She finds a small piece of compressed towel

Soaks it in water

Make sure I don't turn over and don't move around

She doesn't have to do anything.

Just wipe the dust gently

But any girl who has been in the hospital

has experienced cancer pain

experienced fevers several times a day

sweated profusely several times a day

and urinated and defecated several times a day

knows that this will not give any sense of cleanliness

Then I immediately sent a WeChat message to

Other directors of hospice wards I know

I asked you, can you shower?

Can you take a bath?

The answer is no

Not all single wards have showers

No one even seems to have raised this question

It seems to be in the terminal stage

After you are bedridden and unable to take care of yourself

Taking a bath is not important.

Then I contacted some commercial bathing aid agencies

These commercial bathing aid agencies will send four people to the door

Get a bath bed

They can give you a bath

Then I sent them the photo

They said you have too many tubes inserted in your body

Some tubes are for food

Some tubes are for discharge of excrement

I'm afraid you will get infected

No one dared to wash you

So I stayed in the hospital for a long time

When I was discharged from the hospital

My shoulder was rotten

I hired two caregivers

Then good friends came to wipe my forehead every day

My family members came to see me every day

The doctors and nurses all knew me

They also paid special attention to one of my patients

But my shoulder was rotten

Why

Because no one peeled off the tape for me

I had a lot of tape on my body

If you don’t peel off the tape soaked with sweat

then your skin will turn into paper

When you peel it off again

your skin will be rotten

Later I discovered the third more serious problem

which is the symptom control of pain

When I was in the hospital

I actually installed a pain pump

It was a very long needle

inserted into my spine

Then I had a switch that I could press

After I pressed it 10 minutes later

it would pump me morphine

and it would make me feel better

Those 10 minutes were really too long

It was so long that it felt like a century.

Once I almost passed out from pain.

I couldn't speak Chinese at all.

I kept communicating with the doctor in English.

Later, the English I spoke to him was

You either give me an injection.

Or I will die now.

Then this is not even more exaggerated. My cancer was in terrible pain

...

...

The pain was so severe that I had to go to the emergency room

Then the emergency room near my home refused me

They said your condition was too complicated and we couldn’t handle it

I said I just needed you to help me deal with it

It hurts me

I don’t want your treatment

He said no, go back to your original hospital

So I returned to Zhongshan Hospital where I was treated

Emergency room

After waiting for several hours

I was given a pain-relieving injection

It only relieved for a few hours

When I got home, the effect of the medicine ended again

My peritoneum was pressed by the tumor

So my hydronephrosis was very serious

It was so serious that I needed to kneel down to sleep

You still knelt down while you couldn't eat

The pain pervades 24 hours a day

As a result, I spent half a day in the pain department of a tertiary hospital.

Then I found that only three fentanyl patches can be prescribed

In a few days, you have to run on your own

It seems that it is not targeted at the patient

A very friendly and convenient form of pain relief

What should I do if I can't move later

Then I started to worry about other things

Because I have started to have some digestive tract symptoms

Our patients with digestive tract tumors

In the end, most of them died of

intestinal obstruction and large amounts of ascites

This is also what I am most worried about

Usually after such symptoms appear

People will be unable to eat in one to two months

Can't eat

Can't drink water

Starve to death

Take my weight as an example

I am now over eighty pounds

I have lost more than sixty pounds at my height

I will starve to death with multiple organ failure

So I carried this fear

and looked for experts everywhere

I just said what should I do if I have obstruction

In fact, the final answer is that there is no solution to this matter

Why is there no solution

Because from the perspective of a tertiary hospital

When you have obstruction and ascites

you are basically unable to move

The time you occupy the bed is one to one and a half months

So they can't do any improving treatment

So they simply don't admit you

Then I will go to the first-level community health ward

Don't they have many palliative care wards?

But they can't handle this kind of interventional treatment

They can't help you drain the ascites

They can't do more medical intervention

They can only give you pain relief

Then I will have to go to the second-level ward in the end, right

Some second-level hospitals have palliative care wards

But what?

A medical insurance patient has to be forced to transfer to another hospital in 14 days

So for a patient in that situation

it has been more than a month

He has not eaten or drank and has no strength to get out of bed

When he is completely unable to take care of himself

He has to go out and be transferred to another hospital obediently in 14 days

This is simply a nightmare

The difficult-to-achieve symptom control is put into practice

When I was on the demand side

I didn't know

So after I was discharged from the hospital, I thought

Why no one had told me before

I have been an anti-cancer blogger for so many years

I felt that I knew enough people

Why no one had ever told me

Later I found that most patients have reached my stage

No one has the strength to speak out

Their families are also tired of taking care of them

No one has the energy to express themselves in public anymore

So I started to record angry videos after I was discharged

What do I record in angry videos

This series was posted on Weibo

It’s called Life Care Practice for Terminal Tumors

I will talk about what I have experienced at this stage

From how it hurts

What I think

What practical difficulties encountered in seeing a doctor, etc.

The beginning of a series

I was disgraced at first

Later, everyone said it was too distressing to see me disgraced

So I put on makeup

Then wrapped it in a silk scarf

In this way, I recorded for two months

Recorded more than a dozen episodes

Many patients who were in the same situation as me would send me private messages

You really said what we

once wanted to express but couldn't express it

You are such a good talker

I was also very happy

Until one day I recorded an episode called

Shame

This shame I talked about the poop, urine, fart, sweat, phlegm and blood experienced by patients with digestive tract tumors

I didn't post pictures

...

I was simply talking about the shame that these physical symptoms we experienced

brought to us

Then I was scolded

There were two points of scolding

The first point was why you talked about shit, urine, ass, sweat, phlegm and blood

So disgusting

So shameful

I thought to myself

We are all human beings

Whether we are patients or not

Didn't he all have feces, urine, sweat, phlegm and blood?

And in fact, everyone has to go through this process when they die

or when they leave

Then the second point I was scolded was even more exaggerated

Someone scolded me and said

You are a terminal cancer patient

Wear exquisite makeup every day

You also wear a different scarf every day

Appear in front of the camera

You are the one who catches the eye

Silenced me directly

Later, someone told me that watching the video was too tiring

Those patients who were really bedridden for a long time

He didn’t have the energy to look at the phone

He held it like this

He said listening to the voice was fine

So I started recording podcasts in March this year

I don’t know if anyone has it

Has anyone here listened to my podcast?

Go and search Brother Zhuzi on Little Universe

I think the form of podcasting is particularly good

I was on a podcast

There is a podcast about genius catchers

Brother Meng said in the comment area

Brother Zhuzhu is really worth living

Although life is short

Let’s try our best to record and stay in this moment

Let's all take a photo together

So 1,000 netizens left a message

They left me a photo together

One day I was walking in the corridor of Zhongshan Hospital

It was that familiar corridor again

Suddenly a couple stopped me

He said are you Brother Zhuzi?

I said I was

He said we listened to your podcast when we were walking in the hospital

I think what I do is so meaningful

That is, I not only make good use of

my own subjective minute

I also bring different parallel times to others

So this thing inspired me to think about a question

What else can I do

to build and improve others

What about subjective time in the hospital

Maybe the answer lies in hospice care

Because all the patients in the same situation as me

everyone knows what they will die of

But when they find the hospice ward

they will encounter a difficulty

This difficulty is that you know that hospice care is an option

but you don’t have so much time

I went around and screened them one by one

So I gathered everyone's needs

Together with my friends from the foundation

we sorted out this matter again

Sorted out some typical wards

In this form

We are not like any official document

Only the name and contact information

The fields we sorted out are

The first is whether it has a single ward

Does it require a 14-day compulsory transfer

Can it hire a single nurse

Can it take a shower

Can it live according to the patient's own schedule

Instead of picking people up at 4 o'clock

Wait for these questions that are really needed from the perspective of the demand side

...

I privately messaged this form to

People who ask me this question on different Weibo

Some people find it very rewarding

Combined with the hospice care guide I wrote before

Everyone feels that this plan can be achieved in a shorter time

...

Because my thinking is

I think the patient has really reached the terminal stage

In fact, he will not come out and wander around like me again

Their family members are also very tired of taking care of them.

It is impossible to go to each house to ask.

They must solve their problems within three trips.

...

...

...

...

...

...

...

"Looking Directly at the Sun: How to Face Death Anxiety"

He mentioned a theory

Let's talk about the wave effect

The wave effect is about

In fact, the existence and behavior of individual people

is like throwing stones into water

It will cause ripples in other people's lives

It will continue even after the end of physical life

Then I thought

Oh my God Isn't this what I did?

Suddenly I reached a height

I realized that what I had been doing

was actually the action of throwing stones

I know everything I was going through

If no one shares it, no one will know

If no one talks about it, no one will ever build

But every patient who has gone through illness and death alone

He has no way to go back and tell others later.

He can only know the depth of the water by going alone

But he can never look back

What can we people in front do?

It is to throw stones

I throw a stone here to stir up a little splash

I throw a stone there and there are some ripples

The people looking behind me will know

The depth of the water here and the shallowness of the water here

Maybe

Maybe more people do this action

We know that the water is deep and shallow.

All future generations can cross the river by feeling the stones

However, just when I was very touched by this applause

Just when I was preparing this manuscript

Last week someone suddenly liked me in the comment area

He said Brother Zhuzhu, do you remember the pigeon pea fish

Who am I talking about

Then click on the blogger to see

She is a

anti-cancer blogger

Her last Weibo repost was my video

Then the last thing she said was

Brother Zhuzhu, you are the best substitute for me at this stage of my life

And in this video I am talking about

Do people have the right to die a good death

And what difficulties do our terminal tumor patients face?

I couldn't read out her message

I felt too sad

But she made me feel that

even if I was on the road to death

I could still throw stones

It turned out that those who knew that I was throwing stones

they also started throwing stones

and even walked in front of me

and let me know how to take my future path

In fact, cancer is not in our mainstream narrative

It is not as common as imagined

Every year, 5 million new cancer patients are diagnosed in China

7 people are diagnosed every minute

There are even 50 million cancer patients in China who live with cancer

But we rarely hear me care about it every day

Telling real life

Narratives of ordinary patients

Most of the time our understanding of late stage

especially cancer patients approaching the terminal stage is

They should stay well in the hospital

They should all have the dignity of keeping silent

But I don't

Why do people have to be decent

I want to be real

After 7 years of fighting cancer

Now I actually have to answer

Two questions raised in 2018

After ordinary people get cancer

Can he still live a bright life

There seems to be no answer to this question

But from my experience

I have really had a great time in the past 7 years

This is also a new possibility in life

The second question

If the terminal cancer patient cannot be cured

Can I just wait for death in pain

It is true that I have been waiting to die since I was 28 years old

But I also did something else while waiting to die

My life is not bad

It is indeed in the process of exploring and building records

It seems to have also improved the overall situation of our cancer patients

and the expression in the public eye

In fact, when I was diagnosed last year

in August

and when my second surgery failed in December

the doctor told my family

You must be mentally prepared

This is the case of Brother Zhu

She will only have to struggle for a year at most

We must cherish the time

But from August last year to now

a few months

10 months

Theoretically, I still have 2 months left

So I didn’t know what to do at that time

Because everyone around me told me

You have to do what you want to do

Then I thought about it for a long time

I finally chose

Work, travel, write, record podcasts Go on the show

and then express to the public normally

Just live your life normally

I think it's okay

Even during this process

I found that maybe I really redefined my minute

and even helped other people

improve their subjective time minute

And at this moment

those of you who listened to this speech

also spent this minute with me.

Together they formed this group photo of voices

It is precisely because of this

that we can vote for our ideal better world

Let us vote for the invisible group of cancer patients

...

Give them this one minute that can be improved

Thank you all

I am Brother Zhu

Please follow my Weibo

[Chinese]

Hello大家好

我是柱子哥

我是一个在互联网上

真实完整记录自己生活的普通人

我有句口头禅叫

一分钟

每次我自己迟到的时候

我都会先发制人地跟别人讲说

一分钟 塞车

或者是每次客户开那种电话会议

他提了一个我不知道怎么回答的问题

我就马上把自己mute掉

我说 一分钟

还有的时候我不喜欢接别人的电话

我就会把电话摁掉说

稍等我一分钟

但是我永远都不会再回

因为28岁之前的我

是一个把自己的时间视为一种资产

一种资源

一定要进行高效管理和调配的东西

我是不允许任何人浪费我的时间的

作为一个东亚卷王

作为一个时间管理大师

好像我对时间的这种认识

就突然在2018年

我28岁那一年

突然地打破了

我在10月的一个上班的早上

在我去赶8点半

从南京东路到陆家嘴那个地铁上

突然就接到医院的电话

跟我讲我确诊了癌症

让我立即去住院

于是我就在那个工作日的早上

在2018年10月18号

确诊了一种晚期的血液肿瘤

而且发现即晚期

侵犯骨髓

无法治愈

在那个瞬间

我感觉

我不用去抢着打9点钟最后一分钟的卡了

因为我的时间直接被对折了

我才28岁呀

走在医院里面

那个中山医院非常非常长的一个走廊

我好像产生了一种幻觉

这种幻觉却被我眼前的报告变成了真相

大家可以看一下我这个报告

这个检查叫PET-CT

PET-CT之下

它可以看出来你全身肿瘤的分布

黑色的部分就是我肿瘤的分布

可见我当时发现的时候有多晚

有胸腔积液

腹腔积液

盆腔积液

肿瘤浸润了我所有的脏器

甚至包括心脏

淋巴瘤是一种很特别的血液肿瘤

因为人的全身有800个淋巴结

可以说血液流到哪里

癌症就可以发展到哪里

走在中山医院那个走廊

那是一个周一的下午

理论上任何一个正常的公司

好像那个下午都应该在开会

而我只是在走廊里面闲逛 等待

那个时候我感觉它像一个时间的黑洞

它突然让我产生了对时间不同的认识

对时间的认识好像被分化成了三种维度

第一个时间就是医学时间

医学时间是医生跟我说的时间

他会分析我的病情

给我定了治疗的方案

他会说基于你现在的病情

你采取什么什么的方案

你也许可以争取到一个多长的PFS

也就是无进展生存期

如果你执行下去

也许你有多大的概率能活到5年生存期

第二个时间维度就是社会时间

想必大家都很了解这种社会时钟的感觉

比如说我现在35岁了

好像在社会上应该有某个锚定的位置

是属于我的

一个35岁的人

他应该有房有车有个小孩

甚至他应该是一个中小企业的中层

不被大厂优化

过了35岁我的简历都不会被HR看到一眼

第三个新产生的时间维度就是主观时间

我在医院里面居然生出了这种主观时间的感觉

主观时间就是你在此时此刻此地

你对时间的感受

这时间是长是短

是快是慢

是好是坏

是流逝还是停滞

带着这种时间的困惑

我发现随着治疗的开始

我没办法计划自己的时间了

因为确诊得太晚了

我不知道自己要治疗多久

能不能治好

治好了多久会复发

复发了又能活多久

一切一切都脱轨了

没有任何事情可以被计划

与此同时我也彻底掉离了主流序列

那种对时间失控的感觉就像是一个溜冰场上

我身边所有的人

所有的同事同学

大家就在这个溜冰场上

一圈一圈地溜冰

而只有我一直摔倒

一直原地摔倒

站不起来

脱离了主流序列的困惑

我开始上网检索

我特别想知道

别人像我这个情况是咋过的

别人得了癌症

日常的生活都是怎么过的

比如说他们怎么治的

比如说他们在治疗的过程当中

经历了哪些身心的痛苦

比如说治好的病人后来去干吗了

去哪儿了

他们人生因为生病这件事情有影响吗

比如说那些治不好的病人

为什么治不好

后来又遭了什么罪

以及如果真的真的很不幸

不治之症

无法治疗

没有任何改善的可能性走向死亡

那走向死亡的过程花了多久

又遇到什么困难呢

在2018那个时间节点

我发现我上网检索到的都是

节点性的关于癌症的概念

只有三个节点

第一个节点是你听说谁谁谁得癌症了

第二个节点你听说哪个名人

癌症抗癌治愈成功

第三个节点就是你突然看到一纸讣（fu）告

谁谁谁死于癌症

因病医治无效过世

这中间是没有过程的

所以当时在经历这个抗癌过程的我心想

那既然没有人写

我来记录一下吧

反正我正在经历这件事情啊

反正在医院待着闲着也没事儿

当时28岁的我

在完成了第一次的化疗之后

非常不舒服

回到家里辗转反侧

然后我就开始思考了非常终极的问题

这两个终极的问题就是

普通人得了癌症之后

还能不能再活出璀璨人生

人生还剩下什么可能性

第二个终极的问题就是

如果晚期癌症它治不好

那我只能痛苦地等死吗

我怀着这两个终极的探究

开始了我的记录之旅

于是我就在第一次化疗之后写了一篇文章

叫《魔都28岁金融女思维导图自救指南》

这篇文章大家对我这个也不能说好评如潮吧

大家都说我是一个PPT写傻了的小白领

我确实是

在28岁生病之前我确实是全公司最喜欢画PPT

最喜欢做表格

最喜欢画思维导图的那个人

于是我就把自己确诊的经历

写成了1万字的一个长文

这个万字长文里

非常事无巨细地

从感受到事实

记录了我这一程

甚至我还画了一个

有140项的一个大思维导图

就像规划自己的项目一样

不仅有非常纲领性的部分

写了总体的原则一二三四

还有刚性的部分

柔性的部分

还有具体的to do

就责任到人

连文件名称都有

这篇文章当时在2018年

变成了全网千万级阅读量的爆文

此前我那个公众号只有9个人关注

我也从来没有想到

自己作为柱子哥这么小众的网名

会变成一个抗癌博主

随着这篇文章饱受关注

然后我好像觉得

我是不是真的可以按照这个指南往下走

就是真的按照我自己规划和计划的这样

把癌症作为一个可以被解决的问题

可以被定义的事项

以及可以被周全规划和执行的项目

于是我就真的去做了

边治疗边写文章

由于我在医院待的时间实在是太长了

随随便便等一个检查六七个小时

等一个专家门诊六七个小时

等医生查房一天七八个小时

实在是没事干

于是我就变成了医院的人间观察家

我观察到很多拎着县城的CT片子

来医院看专家的小城病人

他们其实对大医院完全不熟悉

上海的三甲医院对他们来说太复杂了

我还观察到那些从小城市过来

也不舍得住在医院周边

并不能完好地安排自己看病的行程的病人

我还观察到很多人不了解异地医保怎么备案

怎么最大化地去优化和利用自己手里的钱

于是根据我的这些观察

我开始写一些所谓的知识型抗癌的经验分享

他们被我称之为指南和攻略

可能很多人都看过

我写过基本上都是万字长文起步的

《普通人如何对抗大病经济毒性》

《小城癌症病人抗癌自救攻略》

和《如何更高效地向医生提问》

再后来我在血液科住的时间长了

我们血液科的病人其实一半都是老年人

这部分老年人他其实大多数人

是不清楚自己得了什么疾病的

也没有办法很好地跟医生沟通

子女也不会跟他聊得太深

他们又不会上网

所以他们其实是没有地方去倾诉和讲述

自己的需求和感受的

于是就有了我这个体察衰老的系列

我在医院和我的很多老年病友变成了朋友

后来我又去读了一个老年护理的大专

专门去了解去观察去记录

这部分老年病人的需求

就当这样我写了两个公众号

不停地输出硬核科普

然后看起来确实

也继续在做题做PPT的过程当中

我发现

我每一篇硬核的知识文章背后

其实是几百条癌症病人

和他们家属的人生故事

他们来我这里根本不是来寻求知识和经验的

他们是来讲述他们自己

人生在经历的真实的困境

和他们真实处境下

无法对任何外人倾诉的问题

他们觉得我是可以理解的

于是我竟然变成了一个人形树洞

我淋巴瘤的治疗其实很不顺利

第一次治疗三个月就复发了

因为我得了一个最容易复发的类型

这个分型它就持续复发 持续治疗

于是我有两年的时间

结结实实地在医院

治疗了两年

这两年好像随着我做一些具体的事情

主观感受上好了一点

比如说我每次去医院等得

实在是特别难受的时候

我在想我不是来看病的

我不是被动等在这里的

我是女作家

我是来取材的

我是来采风的

我是来观察和记录的

我是为了写东西的

就这样给我一种主动感

后来我的文章越写越多

两年我还出了本书

就在我住了两年的医院开了我的新书发布会

然后这些照片我特别开心

我都记了下来

我觉得这样一回头看我记忆锚点也太多了

我每次出门去验血我都搭配一身新的衣服

然后做了一个OOTD博主

当时我面临的那种死亡焦虑好像

就是我不知道活下去会怎么样

也不知道死了会怎么样

都是问题

那就只能自己去探索

去探索接下来会怎么样

通过这些非常小的行动

我感觉自己过得还蛮充实的

同时我觉得我的身体也见证了我这两年

我在生病之前其实是一个非常高瘦的

陆家嘴白骨精形象

长发及腰

大波浪

两年之后

我就因为化疗太多次

治疗太多次

身上千疮百孔

光头了4次

就是在容颜大改之后变成了现在的模样

总结我那两年的时间

我当时的心理就是我好害怕虚度时间

我没去上班

你看别人都在进步

那我

我这两年我过了什么呢

我就想我的每一分钟我都要有获得感

我要进步

我的手机每天都会弹出来一条消息叫

每一天都要有效积累

于是我真的好像获得了两年

特别充实特别有意义的时间

但是我的肿瘤是治不好的

只会一直复发

在结束了两年的治疗之后

我知道

我不知道它什么时候会复发

以及下一次复发的发生的时间

之后我还能不能救回来

我还能活多久

我要终生与这种不确定性共处

那我是等在原地吗

我跑去问我的主治医生

我说我知道我治不好

那我还能做什么能够去推迟它的发生

然后我主治医生说

其实对你来说最好的保养就是不要上班

你就好好地养着

你在家养着

你不要有任何的压力

身体就会好一点

癌症就会像弹簧一样

你把它按在那压着它就不会反弹

可是我不是这个性格

我觉得我已经治疗了两年太辛苦了

我迫不及待地想要自由

我也确实去寻找自由了

然而因为前面两年过于充实的

抗癌博主的生活

在抗癌这个领域变成了一个头部博主

太知名了

以至于我不得不离开我曾经工作的一级市场

我开始新生活的方式是背井离乡

换了个国家

换了个行业

换了个花名

换了个新身份

换了个新工种

重新开始

我去国外工作了

朋友们 海外工作真的太快乐了

就是与前面两年的时间相比

那就是人一到东南亚

快乐得要命

为什么呢

因为东南亚是热带国家

然后它没有四季

没有四季就会让我觉得

好像我对时间的流逝已经茫然不觉了

然后每天又天气热

我是一个来自于东北的小孩

所以我到热带国家之后

我就每天精神涣散

我一个卷王开始都懈怠下来

开始有点躺

就是工作之外我都出去玩

这是我在印尼工作的时候

去了美娜多

美娜多是拍《前任攻略》的一个地方

有非常漂亮的大海

那一天我所有的小伙伴都去深潜了

他们都深潜几十米

但是我非常怕水

于是我就不肯下去

然后我的潜导就把我薅起来

潜导说你就试一试

你让你自己的身体放松一分钟

就一分钟

你沉下去你去感受一下

我们旁边就有海龟

于是我就真的下水去试了

然后让自己放松

不要挣扎

不要紧张

我发现当人沉到水里的时候是失去时间感的

然后你会觉得自己变成了一只鱼

跟海龟一起游

就那样我觉得我自己过了我自己人生中

最美妙的一分钟

以及后面我还去了10个国家

还有更多美妙的一分钟

我真的开心坏了

我就完全舍不得回国

我以为这样的重新开始生活

重新开始职业生涯的日子

可以持续很久

直到2024年

去年8月

我从印尼回国的时候非常非常地偶然

又确诊了第二种癌症

而且还是原发的癌症

我回国是因为我的好朋友们给我补过生日

然后我们去吃了海鲜火锅

我吃完之后我就发现我的肚子鼓鼓的

那个食物它一直没有下去

于是我又回到了我之前治疗两年的中山医院

去做胃镜

连续去了两天

都是因为我的食物已经在胃里面潴留了

胃镜就做不了

不能打麻醉

但是我第二天的航班我就要飞走了

然后我就在医院里

就在那个我熟悉的走了无数次的长廊里面

像无头苍蝇一样

那个发胃镜单子的大叔就说

啊那我们管不了的

你自己去找麻醉医生

看看谁可以给你做

于是我就这样走来走去

直到有一个爱管闲事的东北医生

他是中山医院内镜科的付佩尧医生

他拿了我的单子

他说你要干什么

我说我想做胃镜

他看了看我的情况

他说

这个

我只能先试一分钟

看你能不能麻醉

如果不能麻醉的话

你就要做有痛胃镜了

那最多最多也就三首歌的时间

你熬过去就好了

很不幸

那一分钟决定了我确实不能做麻醉

于是我就躺在那里

满脸是鼻涕

满脸是眼泪

差点把那个床拆了

熬了三首歌的时间

确诊了我人生中最最最不好的消息

原发的印戒细胞胃癌

癌王

而且确诊即晚期

拿到那个报告走到中山医院那个走廊里

我真的是

死亡太近了

这是真正意义上的倒计时

那个瞬间我意识到

我此前的抗癌博主的生活

那个处于还能治

生活质量还不错的生活

跟真正的肿瘤末期

真正快死的心境

它完全不一样

我又回到了这个熟悉的时空黑洞里

这张照片是去年12月31号

过年前的一天

那个时间节点我经历了4个月的治疗

2次不成功的开腹手术

就是打开肚子发现

肿瘤已经漫布了我整个腹腔盆腔

完全没有办法切了

然后肿瘤还一直进展

我当时坐在那里晒太阳

我被那个太阳照得暖洋洋的

甚至感觉自己融化了

我已经很多天没吃东西了

脑子里面空空如也

那种时间的错位感再一次袭来

我住院的每一天的等待都觉得度日如年

我没有力气看书

我没有力气做任何事情

没有办法工作

但同时病房外面

那个社会时钟

那个别人在过的时间却斗转星移

那个下午

我的所有的同事同学

我认识的所有人

大家都在放假

等着明天过新年

而与此同时讽刺的是

我的生存时间却所剩无几

这张图可能让大家身体不适

我发现我在病房里被禁锢的

不仅仅是我的时间

还有我的身体

这个肚子上它同时插了4根

半米长 手指粗的管子

我还插了一个尿管

我还插了一个胃管

然后我胸前的输液港还连着一个输液的管子

然后我的脊柱上还插了一根长长的针

外置了一个开关

作为硬膜止痛

我真切地体会到了迫在眼前的

被剥夺了所有时间和可能性的死亡焦虑

我知道我治不好了

而且会每况愈下

要赶紧找安宁疗护病房了

其实我对安宁疗护这个事情并不陌生

2019年的时候我就开始了

做上海市的安宁疗护的推动

我一开始做志工

后来写文章和经验多了之后

就变成了志工的培训的讲师

还培训过很多志工

后来我又变成了一个公益人物

一直在倡导这件事情

2020年我还写了上海市安宁疗护全攻略

可是

我以为我如此了解如此倡导如此推崇的东西

如此熟悉的时候

我发现需求方给我打开了

完全不一样的视角

我不是一个每天来上班8小时的医生

我不是12个小时轮班一次的护士

我不是一周才来服务一个小时的志工

我是那个24小时躺在那张床上的人

然后我就觉得有点不对劲了

我在找病房的过程当中

发现了第一个问题

有一天我去登记

我家附近的一个安宁疗护病房

那个病房是我们全上海可能最标杆的病房

然后我想我去都去了

我顺便再做一次志工吧

其实我们去每一个病房的服务时间

单人服务时间也就10分钟左右

但是我发现怎么全程一直在拍照

每一个我手捧蛋糕

上去给人家唱生日歌的瞬间

都有人拍照

每一个我大声欢快鼓掌的瞬间

都有人录像

而这个时候我代入的

不再是那个拍照和唱歌的人

我代入的是那个神情迷茫

没有洗澡

没有化妆

穿着病号服的人

我就想如果我没有化妆

没有洗澡

坐在那里

我想被拍照吗

我还看到了病房里其他角落的人

他们看起来更木讷

好像没有人对此有意见

因为大家都不怎么吃东西

也没力气说什么了

结束完志工服务之后

当时同行的一个志工姐姐知道我是柱子哥

上来抱了我

她说柱子哥你太不容易了

你太辛苦了

跟你相比我这点困难算什么

我的人生还算幸福

谢谢你

听完这句话我觉得

就是不知道

很复杂

就很耳熟

然后我就回忆起了

我的评论区经常出现的一句话

这句话的句式就是

柱子哥 你活得太不容易了

你太辛苦了

跟你相比我人生那点困难算什么

我还算幸福的

我要更珍惜生活

然后我就突然意识到

原来自己做了好几年抗癌博主

原来是别人表现帮助和同情的背景板

原来我是别人幸福的参照系

很快我就发现了第二个问题

我发现我不能洗澡了

我在医院的时候最大的痛点就是

我被固定在那里

我身上插了太多的管子

但是医院只给你擦身

然后我们医院护工一个人管了8个病人

我最年轻

所以她每天早上凌晨4点就把我薅起来

她说你要擦身吗

我说我2点钟才睡觉

但是我一天只有一次机会

所以我必须配合她

她擦身的方式是什么呢

她找一小块压缩毛巾

浸上水

在保证我不翻面不用腾挪我

她也不用费任何事的情况下

轻轻地抹一遍灰

但凡是一个在医院住过

体会过癌痛

体会过一天发烧几次

一天大汗淋漓几次

且每天大小便几次的女生

都知道这样是不会有任何的清洁感的

然后马上我就发微信给

我认识的其他安宁疗护病房的负责人什么的

我说你们那里可以淋浴吗

可以泡澡吗

答案是不太能

并不是所有的单间病房都有淋浴

甚至好像没有人提出过这个问题

就是好像到了终末期

你卧床不能自理之后

洗澡这个事儿就不重要了

然后我就联系一些商业助浴机构

这些商业助浴机构他们就是派四个人上门

搞一张沐浴床

可以给你洗澡

然后我把照片发给他们

他们就说你这身上插了太多的管子

有的管子是进食物

有的管子是排出排泄物

怕你感染

没有人敢给你洗

于是我就这样在医院住了很长时间

等我出院的时候

我肩膀烂了

我是一个请了两个护工

然后好朋友每天都来给我擦额头

每天有家属来看我

医生护士都认识我

还特别重视我的一个病人

但是我肩膀却烂了

为什么呢

因为没有人给我撕胶布

我身上粘了特别多的胶布

那些浸润了汗水的胶布你不去撕它

然后你的皮肤就会变成纸

当你再去撕开它的时候

你的皮肤就烂了

后来我又发现了第三个更严重的问题

就是疼痛的症状控制

我在医院住的时候

我其实装了一个止痛泵

它就是很长的一根针

扎到我的脊椎里

然后我有个开关我可以摁它

我摁它之后10分钟之后

它就会给我泵吗啡

会让我感觉好一点

那10分钟真的太长了

就长到我觉得像一个世纪一样

有一次我就直接快疼昏迷了

我就已经完全不会讲中文了

就一直在用英语跟那个医生沟通

后来我跟他说的英语就是

你要么给我打针

要不然我现在就去死

然后这不是更夸张的

更难的地方是你出院之后

我癌痛得要命

痛得我不得不去急诊

然后我家附近的急诊就把我拒收了

说你这个病情太复杂我们处理不了

我说我只是需要你帮我处理

我疼的这个事儿

我又不要你治病

他说不行你回你的原医院

于是我回到了我就诊的中山医院

急诊

等了几个小时

给我打了一个止痛针

只缓解几个小时

我到家的时候药效又结束了

我当时肿瘤压迫的腹膜

于是我肾积水很严重

严重到我需要跪着睡觉

吃不下的同时你还跪着待着

每天24小时弥漫在那种疼痛里

结果我在三甲医院的疼痛科周转了半天

然后发现最多只能开三片芬太尼皮贴

过几天你还要自己跑

就好像没有针对病人

很友好很方便的一个止痛形式

那我后面如果不能动了我怎么办

然后我又开始担心别的事情

因为我已经开始出现了一些消化道症状

我们消化道肿瘤的病人

最后其实大多数人是死于

肠梗阻和大量腹水的

这也是我最担心的事情

通常情况下出现这种症状之后

人会在一到两个月的时间里

不能吃饭

不能喝水

活活地饿死

以我的体重为例

我现在是八十几斤

我这个身高瘦到六十几斤

我就会多器官衰竭活活饿死

于是我当时就怀着这个恐惧

四处找专家

我就说我如果出现了梗阻怎么办

其实最终的答案就是这事也无解

为什么无解呢

因为从三甲医院的视角出发

当你出现了梗阻和腹水

你基本不能行动了

你占用床位的时间是一到一个半月

所以他们做不了任何改善性的治疗

所以干脆不收你

那我去一级的社区卫生病房吧

他们不是有很多安宁疗护病房吗

可是他们处理不了这种介入的处置

他们不能帮你放腹水

他们不能做更多的医疗干预

他只能给你止痛

那我最后就只能去二级病房了对吧

二级医院有一些有安定疗护病房

可是呢

一个医保病人14天要强制转院

所以对于那个处境的病人来说

就是他已经一个多月

没吃没喝没有力气下床

完全不能行动自理的时候

他14天的时候还要乖乖地出门转院

这简直就是噩梦

难以实现的症状控制落到实务当中

当我自己作为那个需求方的时候

我才知道

于是我出院之后我觉得

怎么以前都没有人跟我讲的

我自己做抗癌博主做了这么多年

我觉得我认识的人也足够多了

怎么从来也没有人讲

后来我发现绝大多数病人走到我这个阶段

没有人有力气讲了

他们的家属也疲于照顾他们

没有人再有精力去作公共表达了

所以我出院之后就开始怒录视频

怒录视频记录什么呢

这个系列发在微博

叫肿瘤末期生命关怀实务

我就讲我这个阶段所经历的事情

从我怎么疼

我心里怎么想

看病遇到什么实际的困难等等

一系列开始讲起

我一开始是灰头土脸的

后来大家说看我灰头土脸的太心疼了

于是我就化上了妆

然后包上了一个丝巾

就这样我录了两个月

录了十几期

有很多跟我同处境的病人就会私信我说

你真的是说出了我们

曾经想表达但是却表达不出来的话

你真是个好嘴替

我也蛮开心的

直到有一天我录了一期叫

病耻感

这个病耻感我讲的是消化道肿瘤病人

经历的屎尿屁汗痰血

我没有放图片

我就是单纯地讲我们经历的这些生理症状

给我们带来了怎么样的病耻感

然后我就被骂了

被骂的有两个点

第一个点是你为什么要讲屎尿屁汗痰血这种东西

好恶心的

好不体面

我心想就是

大家都是人

无论是不是病人

他不都是有屎尿屁汗痰血吗

而且其实大家最后死的时候

或者是走的时候都要经历这一程

然后我被骂的第二个点就更夸张了

有人骂我说

你一个晚期癌症病人

每天画着精致的妆容

还每一天都戴不一样的丝巾

出现在镜头前面

你就是博眼球

直接把我干沉默了

后来有个人跟我说看视频太累了

那些真正卧床很久的病人

他没有力气看手机

这样端着了

他说听声可以

于是今年3月份我就开始去录播客了

不知道大家有没有

在座有没有人听过我的播客

去小宇宙上搜一下柱子哥

我觉得播客这形式特别好

我上了一期播客

有一期天才捕手的播客

猛哥就在评论区说

柱子哥真的是太值得活着了

虽然生命短暂

我们就尽量记录和留在此刻吧

大家一起来声音大合影

于是就有1000个网友去留言

跟我留下了声音的大合影

有一天我走在中山医院那个走廊里

又是那个熟悉的走廊

突然有一对夫妻叫住了我

他说你是柱子哥吗

我说我是

他说我们在医院遛弯的时候就听你的播客

我觉得我自己做的事太有意义了

就是我不仅好好地利用了

我自己的主观的一分钟

我也给别人带来了不同的平行时间

所以这个事情就很激发我思考一个问题

就是我还能做点什么别的事情

来建设和改善别人的

在医院的主观时间呢

可能答案还是在安宁疗护这件事上

因为和我同处境的所有病人

大家都知道自己会死于什么

但是他们找安宁疗护病房的时候

他就会遇到一个困难

这个困难就是你知道有安宁疗护这个选择

但是你没有那么多时间

自己一一去奔波和筛选

于是我就汇集了大家的这种需求

和基金会的小伙伴

我们一起又重新梳理了这件事情

梳理一些典型的病房

在这个表格里面

我们不像任何官方的文件一样

只贴名字和联系方式

我们整理的字段是

第一它有没有单间病房

它是不是要求14天强制转院

它可不可以请单人护工

它能不能淋浴

它是不是可以按照病人自己的作息生活

而不是4点钟把人家薅起来

等等这些从需求方的视角出发

才真正需要的问题

我把这个表格私信给

不同微博上会问我这个问题的人

有些人觉得很有收获

结合我之前写过的安宁疗护全攻略

大家觉得好像可以在更短的时间内

去达成这个方案

因为我的思考就是

我觉得病人真的走到终末期

其实是不会像我一样再出来四处咧咧了

他们的家属也很疲于照顾

也不可能去一家一家问了

一定要在三次的奔波以内

解决他们的问题

这个方法可能是很笨拙的

但是对一小部分人也许是行之有效的

前一阵子我读了一本书

就是

存在主义大师欧文·亚隆的书

这本书叫

《直视骄阳：如何面对死亡焦虑》

他里面提到一个理论

就讲波动效应

波动效应讲的就是

其实人个体的存在和行为

就像水中投入石子一样

会在他人的生命中激起涟漪

哪怕在物理生命结束之后依旧延续

然后我就觉得

天呐 这不是我干的事吗

突然就上高度了

我就意识到原来我一直在做的事情

其实就是丢石子这个动作

我知道我在经历的一切

没人分享就没有人知道

没有人讲就永远都不会有人去建设

但是每一个只身穿越疾病和死亡的病人

他都没有办法再回头跟后来人讲

他只能只身过去才知水深浅

却再也无法回头

那我们走在前面的人能做的事情是什么

就是丢石子

我这里丢个石头激出一点水花

我那里丢个石头有一些涟漪

我身后看着我的人就知道

这一处的水深和这一处的水浅

也许

也许更多的人去做这个动作

我们就知道这个水深水浅了

所有的后来人都可以摸石头过河

然而就在我为这个掌声很感动的时候

就在我准备这个稿子的时候

上一周有人在评论区突然艾特我

他说柱子哥你记得木豆豆鱼吗

我说谁

然后就点进去那个博主看

她是一个

抗癌博主

她的最后一条微博转发的就是我的视频

然后她说的最后一句话就是

柱子哥 你是我这个人生阶段最佳的嘴替

而这期视频我讲的是

人到底有没有优死的权利

以及我们肿瘤末期的病人面临哪些困境

我没有办法把她的留言读出来

我觉得太难过了

但是她让我觉得原来

哪怕我自己在走向死亡的这条路上

我依旧可以丢石子

原来那些知道我在丢石子的人

他们也开始丢石子

甚至走到我前面

也让我知道自己未来的路该怎么走

其实癌症不是我们主流叙事里

想象的那么不常见

每年中国都会新发500万癌症病人

每一分钟都有7个人确诊

甚至中国有5000万癌症病人是带瘤生活的

但是我们好像很少听到我这样每天咧咧

讲真实的生活的

普通病人的叙事

大多数时候我们对晚期

尤其是走向终末期的癌症病人的理解是

他们就应该在医院里好好待着

他们都应该有一副一声不吭的体面

可是我偏不

人为什么一定要体面啊

我要真实

在经历了7年的抗癌生活之后

我现在其实又要回答

2018年抛出的两个求索

就普通人得了癌症之后

他还能再活出璀璨人生吗

这个问题好像还是没有答案

但是从我的经验来看

我过去7年过得确实蛮爽的

这也是一种新的人生可能性

第二个求索

如果晚期癌症病人治不好

只能痛苦等死吗

确实我从28岁开始等死

但是我等死的时候也干了点别的

日子过得也还行

也确实在这种探索建设记录的过程当中

好像也改善了我们整体的癌症病人的处境

和公共视野里的表达

其实在去年确诊的时候

8月份的时候

以及我第二次手术失败12月份的时候

医生都跟我的家属说

你们要有个心理准备

就是柱子哥这个情况

她最多最多也就折腾一年

要好好珍惜时间

但是从去年8月份到现在

几个月了

10个月了

理论上我还有2个月的时间

所以我当时也不知道到底该干什么

因为我身边所有人都跟我说

你要去做自己想做的事情

然后我琢磨了半天

我最后还是选择了

工作 旅行 写作 录播客 上节目

然后正常地公众表达

就正常地过日子

我觉得也还行

甚至我在这个过程当中

我发现也许我真的重新定义了我的一分钟

甚至帮助其他的人

改善了他们主观时间的一分钟

而此时此刻

听了这场演讲的你们

也和我共度了这一分钟

共同形成了这个声音的大合影

也正是因为这样

我们才能为自己理想的更好的世界投一票

让我们为那个不被看见的肿瘤病人的群体

投一票

给他们这个可以改善的一分钟

谢谢大家

我是柱子哥

请关注我的微博

Key Vocabulary

Vocabulary	Meanings
asset /ˈæset/ B2	noun - a useful or valuable thing, person, or quality
resource /rɪˈsɔːrs/ B1	noun - a supply of something that can be used when needed
manage /ˈmænɪdʒ/ B1	verb - to control or organize something
tumor /ˈtuːmər/ C1	noun - a mass of diseased cells that have grown too much
diagnose /ˌdaɪəɡˈnoʊz/ B2	verb - to identify an illness
treatment /ˈtriːtmənt/ A2	noun - medical care given to a patient
survive /sərˈvaɪv/ B1	verb - to continue to live, especially after difficulty
efficiency /ɪˈfɪʃənsi/ B2	noun - doing something well without waste
anxiety /æŋˈzaɪəti/ B2	noun - a feeling of worry or nervousness
record /ˈrekərd/ (noun); /rɪˈkɔːrd/ (verb) B1	noun - an official or permanent account of facts or events verb - to keep an account of; to write down
journey /ˈdʒɜːrni/ B2	noun - the act of traveling from one place to another
identity /aɪˈdɛntəti/ B2	noun - who a person is; sense of self
illusion /ɪˈluːʒən/ C1	noun - something that appears real but is not
dimension /daɪˈmɛnʃən/ C1	noun - a part or feature of a situation or problem
suffer /ˈsʌfər/ B1	verb - to experience pain or unpleasant feelings
decay /dɪˈkeɪ/ B2	verb - to become gradually worse or weaker
resilience /rɪˈzɪliəns/ C1	noun - the ability to recover from difficulties
strategy /ˈstrætədʒi/ B2	noun - a plan to achieve something
optimism /ˈɒptɪmɪzəm/ C1	noun - hopefulness and confidence about the future