When I came back to Japan to look after my dying parents I needed something. I was sad, panicking and thrown into despair. I needed some tranquility, serenity…I could say… nirvana. So I started designing tattoos for myself. I wanted heavenly image – flowers, fruits, butterflies… I fancied a garden of Eden in my stomach.
My Big Eden is going to be vertically slashed in half sometime very soon. I am so heartbroken and dispirited. I decided to write down this silly but anguishing feelings.
13th January 2023
The beginning
I always had a slight pain in my lower left abdomen. Since when? …Maybe some time last year. The pain is getting worse. I first thought “Am I constipated? It’s a kind of colonic area?” …No.
My instinct was telling me “it must be ovaries” although they are said to be “the silent organs”. When you feel pain/symptoms that means it’s a little too late.
Anyway, I have to do something. Early detection + early treatment save lives.
I happen to work as an assistant for claims examiners at an insurance company called Aflac. So I do know the basics about cancer and especially – female diseases. Farthermore, I’m very very familiar with tumores both harmless and malicious.
All sorts of scenarios are going round in my head.
I searched good ladies clinic online. I have to say that I don’t know any. Taking this opportunity I carefully throughly searched and searched. It’s not easy – they have to be open late since I may prefer to go after work. Saturday should be open, too. Good doctors, good equipment… but how do I find good doctors? Word of mouth? Reviews?
Japanese health care system
All residents of Japan are required by the law to have health insurance coverage. Patients are free to select physicians or facilities of their choice. Under National Health Insurance, patients need to pay 30% of the total costs (costs associated with surgery, treatment and hospitalization.) of care at clinics and hospitals. It is said that more than 90% of Japanese hospitals and clinics, including dental clinics, accept NHI. Sounds very good, doesn’t it?
However, in order to receive 70% off from the total medical cost I have to pay 26,000 yen every month, as well as taxes. It is mandatory no matter if you are healthy or often visit clinics. If you work as a permanent staff at a company or a good temp agency then they help you so you only pay 9,600 yen per month. This varies depending on your income. These figures are my case so please don’t assume this applies to everyone.
For a long time I had to pay the former figure. But now I am with a good temp agency and work for Aflac I only have to pay the latter.
But we still have to pay 30% of the total cost at counter. This can be a nightmare if you happen to require a serious/complicated surgery or treatment. Because of that reason health insurance is very popular. i.e. MetLife, Aflac, Orix, AXA, Zurich, SBI… these are chart-topping companies.
14th of January 2023
The first examination
I spent hours looking for a reliable sounding clinic online. They accept walk-in patients. Great! I waited for a while – it was very busy.
My turn came and I told the doctor what I’m worried about. I recall hustle and bustle when I had appendicitis many years ago in London – I saw three doctors over four days. They all said, “Oh, you probably have lots of gas in your abdomen.” “You may be constipated.” “Don’t you think you’re little stressed?”
It was of course appendicitis. Thanks to those incompetent doctors (all Japanese) inflammation of the peritoneum had already started. And it took weeks to recover from it. Luckily I happened to meet Doctor Hakim (he is a transplant surgeon). As soon as he saw my face he knew that I was suffering from appendicitis. I still remember he said to me “I cut very low and small so you can wear bikinis.” What a lovely and great surgeon he is!! I need someone just like him now!!
I was imagining the similar situation. However, this doctor was different. He immediately used ultrasonography and found a 15cm tumor in my tummy. 15cm!! I’ve got a melon in my tummy!!
I know a thing or two about cancer. I lost both my father and mother because of this disgusting disease. Besides, I learned a lot at Aflac. I can tell what the doctor is going to say.
He took my blood for tumor maker and booked an MRI clinic for me. He said the tumor is quite large so I will have to have an open surgical resection of both right + left ovaries, uterus, greater omentum and possibly lymph node(s). He also said it is probably “ovarian borderline malignant tumor”. I knew it!! I knew it!! I learnt all these things at work and I am just implementing by myself.
It cost me about 5,000yen today.
20th of January 2023
The MRI day
I had to run to the radiology clinic after work. I’m glad they are open late. The clinic was clean and decent. Nice sofas made me happy. Both my father and mother had an MRI experience so I know what it feels like.
The radiologist asked me some questions. The only thing he frowned upon was – my big tattoo on my stomach. He said “Well it rarely happens but occasionally it burns so in case it happens please accept it.” Hmm… if it happens I’ll kill you!
The MRI started. Very noisy. Headphones don’t really help. I was in the middle of construction site. After 20mins or so the radiologist told me that he wants me to have contrast agent so that the image will be clearer. Injection time. I’m not scared of needles at all so I said, sure go ahead. He started injecting with contrast agent. But he messed up. The liquid poured from the vein. Ouch. He apologized and injected my left arm this time.
MRI continued. Really noisy.
It cost me 10,000 yen tonight. Ouch x 2.
I am very tired. As it’s Friday I can sleep as long as I want. Good.
21st of January 2023
After MRI…
Saturday – I can’t get up. Still tired from last night? Hmm… I’m very sleepy. I slept all day. I have to clean my house, do the laundry, one week worth of washing up, take care of plants… I wasted whole Saturday yesterday so I have to move but I can’t move. I ended up sleeping all day on Sunday, too.
Monday morning… agwhhhh… I still feel very tired. But I can’t take a day off. I get paid by the hour so I have to be there.
Life in Japan
After I came back from London my life has been going down hill. Very steep. I took very good care of my parents, I was with them when they passed and I organised nice funerals for them. Until then it was difficult but manageable and in a way it was satisfying. They both had a smile on their face when they passed.
After that I started looking + applying for a job. I built a good portfolio as an online designer and animator. Then I was offered a designer position and I worked in a few design agencies but I was always bullied, insulted and humiliated. When I was in London, small or big, creative or non-creative, I was loved by everyone and I loved everyone. My work was always highly appreciated. The harder I worked the better I got + I felt great. Such things do not happen here.
However, I have to work to survive. I have to do something. Can I do something else but art + design? A big NO. I have a problem. Japan is a “qualification” society. “Are you qualified to do this job?” This haunts me. After tweaking my CV, applying dozens of job by both online + off line everyday I got nothing. Only “no experience required” were telephone operator and telephone sales positions.
I have worked as an Apple help desk, docomo tele sales, American Express tele sales, KDDI help desk, life insurance tele sales and so on. I have always been paid by the hour and they were only a few months of temporary contact so I have hardly had an annual leave. Besides I always had to look for the next job. I wanted something “not temp”, I wanted some “paid leave”. AND I do not want to look for the next job all the time. I want to watch films on Netflix without worrying when I come home from work.
So I have got a dream job now. If I don’t mess up anything, I mean if I can show them that I am a serious employee I can stay there for at least three years and after six months I get ten days annual leave. YES! I finally got a nice job. I am not well paid but at least I can watch films or listen to music etc. in the evenings instead of worrying about what’s gonna happen in three months time.
I must say that this job is very very interesting. I have just finished training (meaning: watch videos all day everyday on my own) – I leant so much medical stuff. Common deseases like cancer, cerebral infarction, myocardial infarction, etc. and how doctors perform surgeries, rare illness, operations and medicines, and so on. As we judge (whether we pay or not to the insured) by the method of the operation and pathological examination not by the name of disease. I learned how major surgeries are performed, too. I am totally absorbed in learning these things. I had never thought that I can become so into it. I am even looking forward to my debut!!
Some naughty people have a bad health condition and sign up for a health care insurance stating they are “healthy” because they know they will definitely get the money in the future. We have to look into claim forms carefully and stop them from benefit fraud.
But most people are genuinely healthy and want to have insurance coverage in case something bad happens to them. The thing is tho, 99.99% of the insured don’t read their insurance contract/policy. Including myself. So if you have carcinoma in situ and as your doctor tells you that you have a cancer you naturally think you get the insurance money but your insurance policy may not cover it. We have to explain the insured that what plan s/he signed up for and what it covers/doesn’t cover. We also have to ask their health history.
My job exactly is: making a phone call to the insured/beneficiary who made a claim because they found out they have an illness or injury + had a surgery or treatment at hospital/clinic. They think the insurance company will give them the money because they have been paying the premium for decades) BUT we sometimes have to say we cannot pay them at all because the insurance policy says so. This is tough. Some people calmly accept it, some go absolutely furious, some hire an attorney.
I am insured with Zurich. The plan I signed up is especially designed for cancer. Since I don’t know where my policy book is (bad, bad, bad) I phoned up the customer support and I told my condition. I pay 10,000 yen for the premium every month so I naturally expect to be able to get some insurance money.
The operator told me that they won’t pay me because I have “ovarian borderline malignant tumor”. Awgh… Fuck. she told me exactly the same thing that I might be saying to some clients at work. But the operator was very cold, emotionless and she had a business-like attitude. Bitch. I want to be more sympathetic, consoling and amiable towards our clients. I want to say to all of them – I am going through exactly the same path as you are. Life is unfair but please don’t give up!
At the moment I am listening lots of telephone log at work. I am quite moved by my colleagues who have been doing this job for years – they are so good at it. I want to become like them – I should be better!
2nd of February 2023
My old friend – Osaka International Cancer Institute
I’ve had cervical cancer a few years ago. It is said to be a disease if you have lots of sex partners. It is almost thought to be an STD. BUT I have been living like a nun for many years. Sooo unfair. Even if you have only one partner you can develop this disease. Anyone who has had sex once is at risk of cervical cancer. Anyway, I had an operation at this Osaka International Cancer Institute. My condition remains in remission. I am going there again.
I arrived at the Institute at twenty to ten in the morning. As COVID is still raging nobody but cancer patients should be here. But it looks busy.
Today’s menu:
Exam, exam and exam… Somewhere in between I am meeting my attending physician/surgeon. He is the head of gynecology in this centre so maybe I should feel lucky.
- Collecting urine sample and lots of blood sample
- X-ray inspection
- CT scan combines a series of X-ray images taken from different angles
- Respiratory function test
- Pathological cytology and consultation with GYN Kamiura
Dr. Kamiura told me exactly what I was expecting. Just the same thing that I heard at the ladies clinic last month. No surprises. But what annoys me is that I cannot “book” the dates of admission or surgery date(s). The centre decides/prioritizes who comes over who. It’s not like “first come first served”. If there’s someone “more dying” than me that person will get the slot. My boss at work will be troubled as he cannot schedule anything around me…
It took whole day – I came home around seven in the evening. The bill for today’s exams and consultation came to 25,000 yen. Besides I had to take a day off from work I don’t get paid nothing for today.
I told my boss everything. The details of my condition, what surgery I will undergo and the centre cannot tell me when I will be able to admit. Because of his nature of work he must know everything really well. He told me not to worry about work, my health should be the first priority. Very nice guy.
8th of February 2023
Another exam day… Today’s menu:
- Master stress electrocardiogram
- Blood vessel diameter measurement using apparatus
No consultation with Dr. Kamiura today. I took half day so I had an afternoon off from work. Not too bad. The exam fee was 2,000 yen today.
Hospitals
I like hospitals. My mother worked at a big hospital. After kindergarten I used to take a bus to the hospital she worked. Until she finished at half five the hospital was my playground. I was running around reception + waiting area, chatting to patients – some patients gave me sweets, one patient was very good at drawing he drew me a picture of an old bus. I was very impressed. The lady at the shop knew me very well but she never gave me free sweets. People at the pharmacy always looked busy and a bit mean to me so I hardly played near them. I also witnessed lots of ambulances coming in carrying injured people into emergency room. I saw many scary scenes. But I always associate hospital with fun, happy place.
At half five my mother and I happily walked home together. After a big renovation at the hospital she showed me operation theatres, wards, all sorts of examination rooms with the latest machines. She looked so happy and seemed very proud of herself. I was small but proud of her, too.
14th of February 2023
Another visit to the cancer centre
- Personal Interview
- Consultation with pharmacist
- Consultation with anesthesiologist
- Consultation with Dr. Kamiura
Personal interview is funny. They are very good at acting as if they really care about us. I’ve had an interview when I had a cervical cancer. They ask me what worries me, are there any unanswered questions, etc. etc. But it is only a formal gesture. I asked her how I would be able to pay the bill? Zurich rejected me so no cancer insurance money is coming in. …She can’t answer.
I have nobody. I have no husband, no partner, no friends, no children, no relatives. Even if I happen to die nobody will come to my funeral. The funeral itself might not happen anyway. How do I deal with this emptiness? Mingle with other patients? No, thanks. They have someone. I don’t want to hear them saying “My husband said this and that.” “My kids can do this without me.” etc. The counselor in front of me can’t answer. She couldn’t say a word.
Doc. Kamiura told me that I might be able to admit the cancer centre on the 14th of March. He also said that he might be able to operate on me on the 15th of March. I was told to wait for a confirmation call from the centre. He only has a rough idea that I would stay there till the 25th-ish or during the last week of March.
I had to tell him a few things.
One of them was – when I had a cervical cancer my attending physician/surgeon was a different person. (He left the centre sometime last year.) He was annoyingly strict about rules. He said because I needed general anesthesia there should be somebody (my family or friends or whatever) waiting in a room next to the operation theatre during surgery. I did ask a few people who I thought they were my friends but they all said they were busy. I told him that I have no family or no friends so there would be no one coming. He said it was a hospital regulation so if I couldn’t find no one there would be no operation.
I was pretty pissed off. He was not sympathetic at all. He was indifferent. Super reluctantly I had to “hire” someone from “odd-job man” agency. It cost me 15,000 yen. I told Dr.Kamiura that I cannot do that again, if you cannot operate because of the fucking regulations I’d rather not to have surgery and die.
Dr.Kamiura said that’s no problem.
He is cool.
I had to ask him another favour. My Big Eden. I explained to him how important my Eden is and I want him to be extra extra careful when he puts a scalpel into my abdomen + stitches after he removes affected organs. I couldn’t stand if the drawing was distorted. Dr. Kamiura looked a little troubled and said, “I will do my best but it’s a very difficult request.”
Oh, I had a very important question. This is rather critical. “Will I get hairy legs after the surgery?” He firmly answered “No.” I had a suspicious feeling that he might be lying.
On death and dying
My mother was reading this book when she was on a chemo. This is not about the actual moment that your soul leaves your body. It’s about five stages of grief you are supposed to feel – how you deal with it as days go by. I can’t remember who wrote it or how influential this book to dying people. But my mother was really into it and that influenced me.
In short, the book says we go through the following phases. Denial, anger, bargaining, depression, and acceptance.
Denial – As a natural born optimist, I can’t be bothered with those mood/emotion swing/change. If I happen to die, I die. It’s simple. I might get run over by a car and die tonight. I don’t deny the fact that I’ve got a serious health issue. I’ve physically got a pain. My abdomen will be cut 20cm and my Big Eden will look hideous. That’s it.
Anger – Well, “why me?” crossed my mind but I’m not angry. I might become angry if some smart ass says, “Sometimes things happen for a reason.” Nothing happens for a reason. In this world unexpected incidents assembled and dispersed, we are floating particles, flickering. Some die, some survive. There’s no reason.
I want to live forever. I want to keep running, leaning things, visiting places and having fun.
Bargaining – “It happens when people struggle to accept the reality of the loss and the limits of their control over the situation.” I don’t quite get it. I’m not ready to die yet. Freddie Mercury beautifully sings “Who Wants To Live Forever”. It touches my soul and I shed a tear every time I listen to it. He’d known he was dying. Did he go through this five path? What was going round in his mind? Was he ever ready to die?
Depression – Hmm… easy to fall for this. I might become really miserable and depressed later on.
Acceptance – I accept everything including that my Big Eden is going to look terrible. There’s no point in rejecting or denying. It is happening. It’s real. I want to cry but I accept it all.
At the moment my views on the five stages are pretty simple. But will it change over time? Zurich is not paying – I think – in a way it’s a good sign. I’m not gonna die.
15th of February 2023
A is sacking me
My temp agency called and told me that A is giving me only one month extension of the contract. Originally my contract ends at the end of March and I was expecting three months extension. Normally, with big company, they extend the contract every three or six months. At the end of the contract there is an interview/chat with the agency and you can tell them you are happy to continue working…or not.
If they do not extend my contract it is too obvious that they are sacking me because of my health condition. I will be discharged from hospital during the last week of March. It’s too perfect. They are giving me one month means they want me to buckle down as soon as I come back from hospital? I don’t even know how many days I can go to the office + work in April. I have to work like a dog to prove that I am worth keeping? Very cruel. At mid April they will say, “Well, she wasn’t very competent. So we’re not going to extend the contract.”
Fuck! Fuck! Fuck! Fuck! Fuck! Fuck! Fuck!
They have nothing to lose as they don’t have to pay me while I’m not there! They can’t sack me like this!
…or did they notice that I nick loo paper once in a while?
I know what… “You do not fit in our company.” When they have no pacific reason to get rid of someone they use this. I have been more polite than everyone, staying low, bowing all the time, I never chatted/spoke to anyone around me. Many people don’t even say “Good morning” but I do. I passed the insurance exam with very high score!
Damn! Damn! Damn!
I am more shocked than receiving the news of cancer.
Badass…
25th of February 2023
I am calm now. I was naive. Of course they want to get rid of me. I could be their burden or even encumbrance. They don’t want investing in me. I am new anyway. That’s cool.
28th of February 2023
Cancer centre + tax office
Autologous blood donation – As I will be bleeding a lot during surgery they want to store my own blood beforehand. They think 800ml would do. So they are collecting of my blood today. (Half amount today, half next week).
I had to fill a concent form
and measure my blood pressure + body temperature.
Temp： 35.7°C
BP： 114/68 mmHg
HR： 92/min
I had to tell the attending doctor (she was nice and young) that my vein runs from a needle. So that it is better to avoid ordinary median cubital vein. Please shot closer to the wrist. As most doctors and nurse wouldn’t listen to me she wouldn’t listen, either. They are too confident that they can do it. Every blood sampling/blood withdrawal I have to go through three to five “start over”.
The whole thing took more than an hour. She managed 100ml for the second time but it had to be discarded. In total I lost 500ml of my blood today. By blood pressure was 87/56 mmHg. I was told to rest for 15 mins – I felt OK. I was prescribed sodium ferrous citrate on the 2nd of February and I have been taking it for nearly a month now. At that time I was told that my hemoglobin level is low.
After the ordeal I had a shot of something which makes my blood richer(?) or something.
I was charged 6,200 yen for this today! I’m not looking forward to next week for the same pain…
I left the centre at half two. I was there for nearly 3 hours! I rushed to Osaka tax office.
I wanted the tax people to know I am struggling with lots of things right now and I do not know when I can solve this problem. (meaning: I won’t be paying the taxes. for a while.) The officer was kind and told me to keep informing them otherwise I would be in big trouble.
I got home at five. I felt really tired. Can I get up in good time for work tomorrow?
1st of March 2023
I overslept. It was already half eight in the morning! I went to bed early last night but I woke up several times during the night. I decided to take a day off although I desperately need to be paid. They want to get rid of me so they probably don’t care. I rang the office and told the receptionist that I wouldn’t come in today.
Suddenly, the cancer Institute rang. “Your date of admission is now the 7th of March. Please arrive before 09:30 and go through hospitalization procedure at the reception desk number five.”
What??? I was told that the date of admission is the 14th!!!!
“You must have heard that it was a provisional date.” …Well, yes… but I’m not quite ready. When is he operating? “The 8th” What? What? What? It’s exactly a week time from today!!!
I started to panic. Me and my Big Eden only have one week…
2nd of March 2023
I went to work and I told my boss that the date of admission has been changed. He says, “No problem, keep informed us. As you don’t have much time to get ready would you like to take some days off?” Sounds very nice. What a hypocrite. I said no. I need to be at the office to get paid.
As I have now just under a week till surgery weird thoughts and emotions are taking hold of me.
Someone please tell me that I am not dying! I recall – my mother once told me that she could tell that the patient would die soon or survive as soon as she sees the patient’s face. I did ask her, “Seriously!? How much do you think your prediction becomes reality?” I was joking. But she was not joking. She replied “100%” without thinking or pausing. She was very proficient and competent so I believed her – she gave me the creeps. Mum, will I survive or die?
Maybe I’ll survive. But I might become homeless or die of hunger. Not very funny. I’m not poor poor but I would say my life is similar level as “Shameless”. I can just survive if I am healthy. However, things like this happens everything collapse. Fragile life.
What happens to my cats? They’ll be sent to Auschwitz straight away. Japan do not hesitate to kill all animals who lost their owner. I am very sorry, I am very selfish. Maybe I shouldn’t have rescued you guys in the first place. Please forgive me…
No! I will live and take care of you all! I don’t die so easily. Plus I have nine lives, too. I am not a tough person but I will protect you guys until time comes and you happily go to heaven.
3rd of March 2023
I’m at work. It’s lunch time now. I am learning new things – how to write “rejection” letters. Although there are hundreds of templates it’s very complicated and there’s so much confirmation/check list. I should be concentrating but my mind is somewhere else.
I should be contacting some kind of organizations as I will be struggling financially soon.
“Working condition consultation hot line”
“Distress associated with the diagnosis of cancer?”
“Do you have anxieties in life?”
I see some advertisements on the train.
I don’t know who to trust.
Anyway, I’m visiting my local authority municipality after work. They open till 19hrs on Fridays so I can just make a dash!
Higashiyodogawa Ward Office
I arrived at the ward office at half past six. Just in time! …But… the consultation desk I want “People in need of living” looks dark. I stood there completely zoned out – why is this area so dark?
A young woman came to me, “How can I help you?” I said, “I need to speak to someone at this desk. Why is this area so dark?” She replied, “Oh, this window is closed. We close at five thirty, you know?” She was so blunt. “What?! But this ward office is open till seven on Fridays. Your homepage explains it and other windows are still open and looking busy.” She answers, “Yes, most counters are open till seven but not this one.”
I wasted my time and hope.
Why didn’t I start looking for help much earlier? I already knew about the operation in February. Oh, but I didn’t know Aflac is sacking me till recently… Anyway, I need to keep looking – government subsidy? Maybe? But it may take weeks, months… it’s called bureaucracy…
4th of March 2023
Visiting Dr. Yu
I’ve got this rheumatoid arthritis for about two years now. It’s an elderly people’s disease! It has nothing to do with me! Not the least doubt! I spend months and months attending orthopedics spending fortune. But I finally reluctantly visited rheumatologist. Bang! Yes I had rheumatoid arthritis.
I had to get rid of prejudice. There are many young patients (in their twenties or thirties) waiting to be seen by the doctor as well as elderly people.
Dr. Yu is a fantastic doctor. He is excellent, competent, passionate and he is immersed in his job. And he often speaks at medical conventions. He is very kind and sympathetic, too.
Obviously he’s super popular. Tons of patients want to see him. Some people even come from very far. As he has many elderly patients he doesn’t have “appointment system”. Many clinics can be booked in advance online now so you don’t have to wait for a long time. But he keeps old fashion way. First come, first served. His pharmacy doesn’t have digital prescription record system, either. Anyway, when I visit his clinic I have to wait for hours. (I have waited for six hours before) I cannot plan anything after this. But he is worth it. He is a magician.
When I visited him last month I explained my condition. He immediately contacted Dr. Kamiura and asked him to swap information. Some things depend on the pathological examination but while I am staying in the cancer centre I was told to stop taking methotrexate. I can continue taking iguratimod. According to some sites methotrexate is widely used as anticancer drugs as well – why stop taking it? Medical world is so mysterious.
5th of March 2023
Weekly chores
I love christmas rose very much. I’ve been growing for many years. They usually start blossoming in December (as the name says) but this year they were late so I was very worried. I bought a new young plant two years ago. In January she was finally in bud. This morning she is shyly blooming! And it’s twins!
When I tide up or cleaning the house my cats get extremely excited for some strange reasons. I cannot make good progress with the work. “Guys, please let me to the job”
6th of March 2023
Go to work as normal
Every morning I walk from my house to Shin-Osaka (Midosuji-line) tube station. It takes 25mins or so. I pass through Shinkansen entrances. I could go anywhere (as long as it’s Japan) – like Tokyo, Aomori, Kagoshima, Nagoya… anywhere. Every morning when I pass there – “I want to go somewhere just for a few days! I want to jump into any bullet train!”
7th of March 2023
The admission day
I couldn’t sleep as you can imagine. I am very scared and panicky. I watched my cats sleeping peacefully. Sometimes they woke up because I was up. “Why don’t you sleep with us? Do you want to play? Their eyes were about to droop from being sleepy.
I don’t want to go. I want to stay with my cats and plants. My house is really shabby + small but we are all comfortable here. I don’t want to go. I don’t want to go. I don’t want to go.
Everything is packed and ready to go. Self watering devices will take care of my plants.
Your loos are also piled up with fresh cat litter. So sorry. I’ll sneak out of the cancer centre hopefully this weekend to check whether you are OK. I’ll give you fresh food + water and I will change your litters. Promise.
I finally unwillingly left the house. I was told to arrive at 09:30 at the reception five. But it was already 09:45 when I left the house. Hahaha. It doesn’t matter I will have to queue for ages anyway.
The Cancer Institute
I got here at half past ten. Loads of patients are queuing to get processed. Dozens (if not a hundred?) of people are waiting. I had to wait for forty five mins. I guess that’s normal here. One in two people in Japan develops cancer so it’s very busy. I have to read + sign hundreds of agreement forms + consent forms.
I had to take an antigen test for COVID. They let me wait at the reception area till the result come out. Otherwise they wouldn’t let me go to the ward. (They would probably send me home immediately if the result was positive.) I waited for about a half an hour and I was negative.
The ninth floor
Here I am. It’s “Nadeshiko ward”. Nadeshiko is the name of the flower that is loved since ancient times. And also it means “delicate, fragile and faithful” in Japan. It often represents women – they are weak, quiet and loyal. In short, shut your mouth and obey. Sooo predictable and it really sucks. Why can’t we be more creative? Really? It’s 2023.
My room is 917 and the room is shared by 4 people. All cancer patients, I suppose. The room is full but it’s eerie calm. Are they already dead?
Nurses, doctors, administrators… all sorts of people come to me and confirming which I have already confirmed many times. “Do you have any allergies towards blah, blah…?“ “In case of emergency who do you want us to contact? blah, blah.” “Do you take any other medications? blah, blah.” I’ve already told everyone everything!!! And this room is boiling hot!!!
A different nurse came to take my VS.
Temp： 36.5°C
BP： 118/67 mmHg
HR： 98/min
Another nurse came to take my blood worth five test tubes. She saw my terrible bruises from last Tuesday but didn’t say anything.
Another(!!) nurse came and she said she wanted to clean my bellybutton. She had a small cotton ball absorbed in olive oil and placed it on my bellybutton + sealed it with surgical tape. After an hour she came back and cleaned my bellybutton perfectly.
A female doctor came. It was the woman who gave me real hard time last Tuesday!!! Big time!!! She said hello and a little apologetic about what I had to go though last week. She told me to show her my stomach. I lowered my trousers + knickers. She quietly “Whoa”ed. “This is the tattoo isn’t it?” Obviously she heard about my Big Eden from Dr. Kamiura. “We’ll try our best about your tattoo. Are there anything else you want to discuss? Are there any worries?” WHAT??? Are you in the same team as Dr.Kamiura???? I’m very concerned that you’re going to participate the surgery!!! Noooooooo!!!
Yeah, nightmare starts here. I’m in this snobbish, prudish, incompetent woman’s hand.
I had to ask her – Are you going to take the rest of my blood? You only took 400ml last week. We need another 400ml, don’t we? – in a sarcastic manner. She replied, “Well…we think we have enough blood for now.” Oh, that’s great news! You know, last week was a real torture for me. Please, if you can, stay away from me.
I was told that the surgery would start at 12 noon-ish depending on how quickly/slowly the previous surgery goes. I can have a normal dinner at 18hrs today. No eating after that. I can drink water/tea/sports drinks up to 1500ml until eight in the following morning. No drinks after that. Tomorrow I’m not allowed any food or drinks. I will be put on an IV drip for several days.
Food here is not particularly particular. But I must say that they try hard to maintain healthy eating. Fish, vegetables, rice. No frying or no sautéing. Simmered or boiled. Not salty or too sugary. Nicely seasoned.
I couldn’t sleep although I took some sleeping pills. I am not too scared but I am nervous, just felt uneasy.
8th of March 2023
The big day
I finally fell asleep. I slept about two hours. it’s 06:40. This room is so hot that I sweat a lot. I’m thirsty… I went to a shop downstairs to buy a bottle of water. Nobody is around. Very quiet.
A nurse came and took my VS at around seven.
Temp： 36.5°C
BP： 124/82 mmHg
HR： 98/min
She also gave me an enema. I was told to show my poo before flush. All is done. A bit embarrassing. She said I should drink more water before eight. And then I will be put on a drip.
Dr. Kamiura came to say good morning at around eight. He asked me whether I slept well nor not. He added I shouldn’t drink anything from now on and the surgery will start 12noon-ish. Then he went off in a hurry. Perhaps he has to rush to the theatre to operate first patient.
A scary looking nurse came at ten. Other nurses try to be friendly but she is very serious. No smile. She took my VS.
Temp： 35.7°C
BP： 128/82 mmHg
HR： 98/min
She also very very super carefully put me on a drip. Wow, she is a pro. No pain at all. She had to confirm everything for the 100th time. “Are you allergic to something?” “Do you have any artificial teeth?” “Who do you want us to contact in case of emergency?” “Who’s coming here while you are having a surgery?” etc, etc… She suddenly whispered “I heard you have a tattoo.” Yeah, I have three tattoos. “Do your anesthetist know about it? Do the operation team including nurses?” I don’t fucking know, lady. And why are you suddenly whispering?
She also told me that after the surgery I will stay in an HCU until tomorrow morning. Then I will go back to my room sometime tomorrow. Oh no, sounds scary… I am becoming very nervous.
I don’t want to have a surgery! I want to go home with my Big Eden now. I miss my cats and plants, too! Somebody please help me… It’s 11:30… I want to cry…
Suddenly…
The scary nurse rushed in. “The schedule has been changed! We have to go to the theatre room NOW!” …it’s still 11:37… “No, no, no! We have to go now!” emm… OK, can I bring my mobile with me? “Of course NO! We have to go NOW!
As soon as I lay down on the very narrow bed lots of people (I guess doctors, nurses, anesthetists and many more) gathered around me and started attaching devices on me. It was like the ants were swarming to sugar. I remember someone saying to me “This makes you cough but it’s normal and you can cough, it’s OK…” Then I fell into another world.
I woke up. Oh, this room has to be HCU… Ouch! Ouch! Ouch! my tummy hurts!!
A lot of nurses came one after another to check me. Still sleepy… What time is it? When did the surgery finish? Somebody answered, “It’s 19:10 now and the surgery finished at 18:40.” OK… thanks… They were very busy checking things. I asked, “Can I have my phone? My stomach hurts so much – I need something…”
Everyone said, “Absolutely NOT”
Except one very sympathetic nurse!
“OK, I’ll get your phone from your room.”
Ohhhh, thank you so much! “It’s OK. But I need to check your back.” My back? What for? “I have to see it. I have to check ○○○ and △△△.” Do you want me to turn? Now? You must be joking, my stomach is burning right now. “You can really do slowly and gentry. And you’ve got a pain killer drip, too.” No No No, your painkiller is not killing my pain!! “You can do it”
Yes, I did it. I was screaming. In tears, too. And I have my phone listing to music very loudly. I don’t have to use my headphones! This HCU room is pretty big and full of equipments so there are lots of sockets everywhere to charge my phone all night!
9th of March 2023
The sweet nurse, Miss Suemitsu took care of me all night last night. She took my VS every 45 mins.
My body temperature is quite stable but blood pressure has been very irregular- the highest went to 149mmHg – 128mmHg – 145mmHg – 124mmHg… She said it’s very common that the blood pressure keeps jumping up + down repeatedly after a surgery. What annoyed me was that every time my heart rate indicates outside mean value an electronic device beeps really loud. I wasn’t able to sleep but I was able to listen to music.
Miss Suemitsu looks very young and relatively new. She was very very nervous when she took blood sample from me. She called a senior nurse and asked some advice but most importantly she LISTENED to me. I explained that my vein runs from a needle. So that it is better to avoid ordinary median cubital vein. I pointed a spot where any nurses or doctors can succeed and she followed my direction. She was so nerves that her hand was shaking. But she managed to take my blood sample in one go. I told her that I didn’t feel any pain at all and she would be very good at it in no time.
One hour later she came and said, “I need to see your wound whether it’s bleeding or not.” Wound? My Big Eden? I want to see her, too!! “I can’t remove the tape, tho. Can I also touch your stomach gently to check if anything wrong?”
Dr. Kamiura came in. He asked me how I am. I replied that my abdomen hurts really bad so I can’t speak, I have to whisper but otherwise I’m OK.
He looked terribly serious. “What was going on inside your abdomen was very bad. Quick pathological examination during the surgery indicates your tumor is malignant not borderline. Your large tumor was wedging in intestines badly, too. I removed your both right + left ovaries, uterus, greater omentum and lymph nodes. I cannot tell you what stage you are until I see the result of the final pathological examination in three weeks time. You will be given chemotherapy later.”
Well… I guessed almost right. Malignant not borderline… chemotherapy… Hmm… not good but it’s OK. In that case, Zurich will probably pay me some insurance benefit. They’ll pay for the chemo as well. The thing is… What stage am I? I desperately want to know ASAP… But I have to wait for three weeks. It feels too long…
Two nurses came and wiped my whole body with hot wet towels. They were a bit rough. Changing position is EXTREMELY painful and I guess my body is super sensitive to anything now so I wanted them to be a bit more careful and gentle…
It looks like Miss Suemitsu’s shift finished. I don’t see her around… I wanted to say thank you for having cared of me + being sweet to me all night. Working in an HCU must be really tough compared with other wards.
Different nurses come and do the routine.
Take my VS
Take my blood sample
Check my wound
Give me a shot
Change drips
Change painkillers
Check my urine volume
…and many more…
I thought I would watch many films on Netflix while I’m here but they keep me busy. I saw none so far.
It’s just after ten in the morning. As scheduled I was taken to my room.
As soon as I arrived here a nurse said, “You are going to start a rehab. Don’t worry I just want you to walk around here. You can walk very slowly. We encourage early rehab everyone since this helps your intestines work properly.
OK… you really keep me busy – I thank you. I’d rather not to focus on pain all the time.
When I burp or hiccup, the pain is indescribable. I cannot speak either. I don’t know why – maybe speaking uses abs…? I have to whisper instead.
I have to put the tray on my lap – I cannot sit up in bed. This is a medical bed so it’s auto-reclining. But still, it hurts too much.
After lunch I must walk a bit more. I want my intestines to start working properly soon.
The lady doctor who gave me a hard timeweek came to me. She was very nice and more sympathetic towards me today. Well she saw what was going on in my abdomen during the surgery so maybe she felt sorry about what I am going through. I had some questions (although Dr. Kamiura told me a lot about how the surgery went and his views on my current condition. ) Why do I still have the same pain (lower left abdomen) I’ve got since last year? You removed my ovaries, didn’t you? How long do I need to rely on painkillers? etc. etc… lots of questions. She tried to answer each one sincerely. I must appreciate that.
Although this meal doesn’t look appealing at all I must say that it was delicious. Each dish is a humble, simple dish and yet flavorful and super healthy. They try real hard in order to tickle patients’ appetite.
I’m tired. Very tired. I want to sleep tight tonight.
10th of March 2023
I slept really well. I vaguely remember some nurses came to do the routine work every hour or so during the night but I was drowsy.
My breakfast arrived. I thankfully ate it all.
A lady (an assistant nurse?) came to me and told me she could wash my hair. Great!!! I was sweating a lot and feeling greasy this is a nice surprise for me. She was really good. I felt refreshed and clean.
My first fart – 14:30
My first poo – 15:30
I am sick… I am feverish, nausea, pains… I can’t drink or eat anything. I cannot sleep either. A nurse gave me some medicine but nothing seems to work. My body is sick…
11th of Mach 2023
I am still sick. I couldn’t have breakfast.
A nurse came in and she removed tapes around my wound. It looks like 30cm cut not 20cm! These days they don’t stitch they use tapes. So, no take out the stitches. That’s a relief but… doesn’t the wound open triggered by something? It’s not appendicitis the wound is very long! I guess the cut is secured with lots of small tapes…
I haven’t been able to eat at all. I feel sick, feverish and nausea… my entire body is sick. Nurses say that it’s quite common to go through with these after the big operation. So I just hang in there until I see a silver lining.
I can’t speak, I don’t even have energy to listen to music. I feel weak.
The pain is still beyond something. Nurses only give me either acetaminophen or loxoprofen. They are for headaches and cold or period aches, aren’t they??? Why can’t they give me more powerful drugs? This wound really hurts!! Their anti-nausea is crap, too.
Hey, this is a Cancer Institute. The nurses do know what the patients suffer from and symptoms. Their daily routine cover almost everything, I guess. So you are not special! Just hang in there till things get easier!!!! aaarrrggghhhhhh!!!!
After having complained many times a nurse brought me something different for my pain. “We hope this will ease your pain.” My expectation was sky-high. My life will be easier! Thank you!!!! ♪───Ｏ（≧∇≦）Ｏ────♪ BUT What they brought me was loxoprofen “60mg”. !!!!!!!!!! Do you think I’m an idiot? I’ve been taking loxoprofen “40mg” and I am saying it does NOT work!!!!!!! Rooaaarrrr!!!!
I have to endure this unbearable pain till I see another silver lining…
Sam Taylor Wood (Sam Taylor Jackson)
Sam Taylor Wood is one of my favorite YBA artists. When she rapped up the whole Selfridges with super cool photographs I was stunned and amazed by it. I happened to bump into her at the Tate gallery’s (Pimlico) loo. I was excited as I am a big fan. We were chatting… She pulled up her blouse and showed me a big scar (as big as mine) in her stomach. Yes, she had two cancer operations. I was speechless at that time as I had never imagined one could get through such a large wound.
She liked my lipstick and wanted to borrow. She was very friendly. She survived two cancers, divorced, re-married, raising four children, keep working hard. She even directed “Fifty shades of grey”. She is a super winner.
Sorry mum, sorry dad, I wasn’t able to reach you guys. You two were devoted to work, you influenced so many people without stupid SNS. Still now thousands of people miss you guys and wanting to learn something from you. You didn’t make a fortune as you thought helping is more important than money. You guys had a fine life although we never had a holiday together.
I am a fine looser, haha. I work hard, learn hard, but built nothing. I don’t even have a family to look forward to. No partner either. However, I did more or less everything I wanted to do and worked bloody hard on them until I left London. That, sort of, counts. I discovered the joy of learning. And everyone surrounded me was fantastic. Shall I let my life end here, rather than go through a thorny path struggling and suffering alone as well as fighting against cancer? I’m not that strong.
12th of March 2023
I spoke to a friend. Video call. Because of time difference it’s hard to schedule it but weekend is easier for both of us. Surprisingly it didn’t feel that many years passed. It felt like we said goodbye yesterday. We talked about many things… everyday life, weather, cat, etc.etc…casual chat. It’s been years since I feel normal and human. I was gradually feeling something – something which is the most precious thing on the planet. Love and friends. I am not alone at all. How stupid of me! I feel cherished and happy.
I cried, cried and cried. It was an overwhelming experience. I couldn’t stop crying.
13th of March 2023
My condition changed again. I feel ill. I feel sick. I have to surrender and I have to wait till it changes again.
14th of March 2023
I am still under the weather. Difficult times.
A nurse came in. He said, “Your stomach doesn’t seem to be producing liquid now. So let’s remove the tube.” YES! This tube was hurting me, too. How long is this tube inside my stomach? “Depending on the individuals but normally 20cm or so.” 20cm? Yuk, argh. Are you going to stitch? “Stitch? Nah. It’s only 1cm diameter. Taping is fine.” Hmm…it’s a fairy big hole to me but I don’t want stitch marks so it’s OK by me. He added, “You will feel much better after this.” – Yeah, I hope so.
Half an hour later a different nurse came in. “I want to remove the drip needle. You’re not eating properly so you might have to have another IV but for now you will feel much better because you will be able to move freely. Hopefully your appetite will come back.” Argh… hopefully, hopefully and hopefully. But they must know what they are doing and they are only doing it for the better result so I should shut up and follow.
But my body doesn’t adapt so quickly. I’m still feeling awfully sick.
15th March 2023
It’s been exactly one week since the surgery.
Although I have been busy doing rehab, check ups, lots of lots of jabs, blood drawings, having to change IV, do this and do that… time passes slowly. It feels like I’ve been here for a month.
I should feel better but not really. Still feeling sick and still can’t eat. I feel weak + dizzy.
I went downstairs to withdraw some money. I had to put all my strength into it. It was 07:30 so I’d thought it would be quiet but around fifty people were patiently queueing up to get a chance for initial consultation. Normally we visit local small clinic first then the doctor tells you what to do – “You need to go to a big hospital for special treatment/surgery. I am going to write a referral letter and book you for your first examination.” – This is how it works. This is the normal way otherwise you will have to pay a very expensive initial consultation fee. Besides there’s no guarantee that you can see your targeted doctor. What are they thinking? They are that desperate?
Sounds like two patients (in my room) are going home today. They both sound like special clients here. They are not one-off patients. They stay here for a while, get surgery + treatment then go home and they come back here – they seem to repeat it. Their life must be chaotic. They must be so tired of life… I hope they can break out of that life soon…
Two people left but another two filled up my room quickly. This entire ward is for women. But of cause it’s not necessarily that we are all here for gynecology treatment. Some have different cancer. So we all have pain in different area in the body. Different surgeons, too. Some surgeons are attentive, some are not. I hardly see Dr. Kamiura. He and his team must be crazy busy. It’s 20:30 now but I overheard that he is not available because he’s still operating in the theatre. My operation took seven hours but he had done one surgery before me, too. They must be completely worn out.
When will I be discharged?
16th March 2023
Niwata saaaan, Niwata saaaaaaaan…
Zzz… someone’s calling me… what’s the time now?
A nurse wanted my blood sample. Really? This time of the day? What’s the time? “Hahaha, sorry. But it’s already six in the morning.” Six? You don’t normally take my blood this time of the day. I’m very sleepy… Take as much blood as you want… zzz…
She came for my blood this early… There was a reason for it. Dr. Kamiura wanted it ASAP. I was called to see him in his office on the second floor at nine o’clock. He asked, “How are you today?” He is checking inside of me. He’s not interested in my wound. I replied, “Hmm, I am slowly getting used to this horrendous pain. I feel sick + dizzy probably I’m not eating.” He said, “How do you think of tattoo? Did I do well?” He wasn’t listening to me. I said, “Yeah, it’s OK.” My chair is already going down. “You are going home tomorrow morning. I’ll prescribe some medicine for you.” The curtain was drawn aside and a nurse told me to go back to my room.
What?! Going home tomorrow?
I told a nurse that I am a bit worried.
- I feel sick + dizzy so I can walk inside this ward but I don’t think I can walk outside. I need something to hold onto.
- What about the wound? How do I take care of it? What’s the dos and don’ts?
She said, “Don’t worry, we’ll talk it through later. Plus you will see the video, too.
OK… I’m going home tomorrow. That’s great news. I can see my cats and plants. I miss them very very much. It’s just… I feel so weak that I don’t think I can take trains and walk from the station to my house. I’ll collapse. I have no choice but taxi… Aghw… it costs so much. Oh, I have to check Amazon. I will need… milk, water, medical tapes, food? no… maybe granola… oh, I have to get this “Save money – specked apples for 2,000 yen” Allright. Done. Some of them will arrive tomorrow. I’m going home! I’m going home!
I saw the video – “Understand the difference in your body – before and after + How to look after yourself at home”
I lost right + left ovaries, uterus, fallopian tube, greater omentum and lymph node. Sounds many organs were taken out from my body. (Well, yeah it’s a lot) But in volume I lost only about 2% of “stuff”. Stomach, esophagus, liver, intestines and all other “stuff” account for 98% of the body. So I shouldn’t really think losing them is a big deal. I lost only 2% of my body.
Lymphedema – Agthwwwww… this is what I was worried about. I don’t know much about this sequelae (nobody knows!) but I heard about it. It’s ugly and difficult to ged rid of.
The leaflet a nurse gave me says “Do not irritate your skin. Keep it clean, moisturised. Do not scratch. When gardening, don’t use bare hands, your skin is very sensitive towards any kind of infections, blah blah blah… but I have cats. My body is covered with scratches and bites. I have to observe my skin everyday and measure my left + right ankles, calves and thighs. Compression leggings maybe a good idea but does it really help?
17th of March 2023
Going home
I am still very weak. I have to hold onto something when I walk. My initial plan was take a train and tube then walk from the station to my house but I have no energy to carry my suitcase + bag and walk all the way. I reluctantly decided to take a cab.
I have to pack now. My room is such a mess. It’ll take a while.
I fainted while I was packing. I was too weak to even pack. A nurse found me and she took my book pressure. The high one was 68 mmHg. She told me to rest for a while + it’s absolutely no hurry, do slowly.
Finally I finished packing. Normally you carry your suitcase behind you but I needed to cling to something so I walked as if I carry shopping cart. Discharge procedure took some time. Everything takes time.
Taxis are always stand by at the main entrance. As I approached the driver quickly helped me with luggage. He also helped me getting in the car. I gave him my address and he put it into car navigation system. We had some conversations.
“How long did you stay there?”
Ten-eleven days.
“Oh, you were there quite some time.”
Yeah, the surgeon cut my stomach 40cm and took many organs out. So I guess that’s about right.”
“Oh, dear… They don’t even let the critical ones stay very long, do they? You did very well. But how are you feeling?”
Hmm… I am still sick and dizzy. I can’t eat much. I became very weak now.
“Oh, no… but hopefully you’ll feel much better at home.”
Thanks. I will take it easy and will slowly get better. I think I was lucky with the surgeon.
“Oh, that’s good. They seem to be excellent here. But poor guys I heard that they wear nappies.”
Nappies…? …I see… because they don’t have time to go to the loo… I suppose they don’t have time for lunch either… I recall my operation started at 11:40 finished at 18:40. But he had another operation before me starting at 8:30. On top of that I overheard that he was still operating at 20:30. They must be exhausted.
“Yes, I’ve heard similar stories. It’s a tough job, isn’t it?”
Obviously, cab drivers know all sorts of behind-the-scenes stories. He must know a lot about patients, doctors and staff, etc…
Now, I am home!
I missed my cats badly. But they are a little angry at me because I didn’t leave enough food. (I left enough for two weeks, tho) They didn’t destroy the house but they made a huge mess. I’m sorry. I’m sorry. I’m sorry.
Elder cats were asleep. They must have heard I was coming in. But they didn’t bother getting up to say welcome back! Aghwww… Well, I’m glad they are OK although they’ve got black nose!
First thing first… give cats lots of treats. Water plants. Clean cat litters…
Then I fainted again.
22nd of March 2023
I was in hell for four and a half days.
I fainted when I was doing something… I can’t remember what I was doing, crap! Well, I should say I passed out. For hours. It was already dark when I came round.
Since then my condition drastically deteriorated. The same symptoms, tho. Nausea, fever, pain in the abdomen plus I was so weak that I couldn’t move. I couldn’t sleep either. It was a real hell. “Nausea? Fever? Stomach pain? Can’t sleep? That’s not a big deal, is it?” I would have thought so before the surgery. But it was a true nightmare for me this time. I suffered enormously. Big time.
I vaguely recall I rang the helpline at the cancer centre. They have some surgeons ready to receive emergency calls from patients 24/7. I think – it was Sunday morning.
I told the doc my full name and DOB. He promptly found me in the system. He can see what I’ve been though.
“How can I help you?”
Err… I have severe nausea. I can neither eat or drink and I am weak. What anti-nausea was I given while I was in the centre?
“You were eating fine while you were here, tho.”
He sounded aggressive and angry.
No, I wasn’t. I could only eat yogurt and orange juice.
“According to our record, you were eating half of the meal each time.”
No, I had never been able to eat anything else.
“Are you saying our nurses are lying?!”
Now he is really angry. I don’t know what the heck his problem is. But don’t take it out on me. I’m a powerless patient. I said,
Maybe something got mixed up? I really haven’t been able to eat.
“Then you should have drips. You should come here and get examined.”
I wish I could, I can’t afford another cab trip to the centre. That’s why I’m ringing. But he probably doesn’t get it. I just had to say,
Doctor, I cannot go to the centre. Just tell me the name of anti-nausea I was given there.
“You should come here first.”
He’s pain in the ass. I’m dizzy, I’m dizzy…
Doctor, please tell me the name…
After that I seem to have passed out. I came round at lunch time.
Miraculously, he seems to have told me the name of the medicine and I caught it just about. “Metoclopramide” (Primperan) that is. But it’s not an over-the-counter drug. Shit. There are many sites that sell drugs without prescription but they are very expensive and it takes two weeks to get here. I suddenly lost all strength. I fell ill again. I had to fight with nothing. I was all I’ve got.
After three and a half days of misery I somehow came back to this world.
This morning I had almond milk and an apple. My nausea hasn’t completely gone but at least I managed to eat an apple. Big progress!
23rd of March 2023
I thought I was getting better.
But I feel sick again. Nasty nausea has come back. I feel dizzy as well. Should I go back to the centre as the angry doc on the helpline said to me and have an IV? Is it intestinal obstruction? Or… ileus? (Well, I don’t know the difference, tho) If so, I have to have an IV. Blood sample, X-ray, CT scan etc. will be needed. My next appointment with Dr. Kamiura is exactly a week time. Will I be OK until next week?
24th of March 2023
I feel little bit better today!
I had an apple for breakfast and I ate some granola for lunch + dinner. I watched “Luther” and “Nobody”. I enjoyed both but especially the latter. Apparently, there is “Nobody 2” already exists. I want to see it now!
I managed to take rubbish out. It’s been weeks and I’m glad that I finally got rid of it. My tummy still hurts – inside my abdomen – where the surgeon dug and poked. The cut and 1cm ⌀ hole seem to be healing OK but inside hurts really bad. Feels it’s worse everyday.
My cats eat granola, too
25th of March 2023
I slept well last night. I feel “slightly” better than yesterday. I know I have to eat well, drink at least 1 litter of water everyday. I do far from it. But I think I progress tiny bit each day.
After I feed my cats I have to lie down.
After I water my plants I have to lie down.
After I clean cat litters I have to lie down.
After I wash my cups I have to lie down.
After i shower i have to lie down.
…and so on…
I am sick + tired of being so weak. However, I should be thankful that I can now do those small movements.
29th of March 2023
There are ups and downs in my condition. One day I feel OK and this is a silver lining. The very next day I am sick and severely dizzy. I don’t know what to think. Inside my abdomen always hurts. I wonder why my stomach hurts + the area where my ovaries were hurt. I know because the surgeon dug and poked there but it’s been three week since my operation day. Does everyone suffer this much + this long? Maybe. I just hope that I’m not developing ileus.
I had a very good idea. Cheese. It is rich in calcium + protein and high calorie. It’s perfect to gain my stamina. And I love cheeses anyway. The slight problem is that cheese isn’t so common in Japan so unless I go to fancy department store’s food court I can only find kids cheese. Let’s see what I can by from Amazon.co.jp. …Well… Kraft’s grated Parmesan cheese, shredded cheese, thinly sliced cheese… aghw… After I patiently checked many pages I ordered some packs of small cheeses and one Stilton. Oh, and thanks to my friend’s suggestion I also ordered miso. (White one)
They arrived the next day. I felt as if I was receiving Christmas presents. I thought my agony was gone.
I ate lots of cheese and miso soup. (Not together, as you can imagine.) I felt really good.
However, here I am… I’m sick again.
30th of March 2023
Going on a dole
I decided to take an advantage of government scheme. I called council’s benefit office the other day and explained my situation. A woman (she seems very young – maybe still in her twenties?) came to my house at nine thirty this morning.
Ms. Araki (the officer) asked me lots of things including my birth place, which elementary school I went, the secondary school, high school, college – I had to explain “my life” in details to her. I wasn’t going to tell her that I lived in London for many years but I didn’t know how to lie and I thought they may find out that there’s a big hollow in my life soon or later. She wrote down everything and I had to read + sign many many papers. The whole process took nearly two hours.
One of my cats “Mii-chan” was very curious about this young lady. She was sitting on her lap, kissing her nose, trying to help her writing and so on. She was even purring loudly, too. Ms. Araki wasn’t annoyed at all. She said, “Cats seem to like me. This happens a lot.” I was glad that she was cat friendly. She told me that I will get 75,000 yen per month + all the medical costs. They will even give me if I have to take a cab to the hospital. It’s not a lot of money but “all the medical cost including taxi journeys” sounds great to me.
Meeting with Dr. Kamiura
I had to hurry – I have an appointment with my surgeon this afternoon. I’m very very tired but I don’t want to re-schedule this appointment. I have many things to sort out with him.
As always, I arrived at the cancer centre at 14:20 although my appointment was 14:00 and I should arrive one hour early because they want my blood sample beforehand. It’s OK they always let me wait. I take it easy. I don’t want to faint in a taxi.
I told my doctor all the problems I have + how I have been coping with them. One of the big questions is: Why do I suffer from stomach pain? You didn’t touch my stomach during the surgery, did you?
“It comes from stress. Your body is worn out. Not you, your body is stressed out.”
That’s interesting. Yes, he’s absolutely right. Somehow my mind has been fighting but I seem to have been coping OK. But my body has been crying. I understand it now.
Dr. Kamiura listened to me carefully and prescribed lots of medicines. They are different from what I have been taking. With these new medicines I will be OK. He also told me that pathology result is available. He explained many things but I couldn’t understand jargons. What I understand were: “malignant” and “stage IC1”.
Stage I ?!!! According to Japanese Google the survival rate of ovarian cancer patients are:
“Stage I: 90%, stage Ⅱ: 70%, stage III: 45%, stage IV: 30%”
YES!!!!!!!!! I can live!!!!!!!!
But I will have to do chemo. I’d thought that it’s an outpatient matter (as I always escorted my mother’s chemo) but I was told that I have to stay at the centre two nights. Hmm… two nights means three days – every three week/six times (that’s one cycle). Never mind, my cats will forgive me.
As Ms. Araki said I didn’t have to pay anything today. It was a bit of hustle but all was free. I was rejected at the hospital pharmacy but I didn’t have to pay anything + I’ve got everything free at my local pharmacy.
1st of April 2023
My condition hasn’t improved yet but I feel much better just because I told everything to my doctor. Although my agony is severe I now know that it’s very common “aftermath” symptoms.
My left leg is very heavy and stiff. This is new. This is totally different from rheumatic pain I often have. Something is wrong with me.
2nd of April 2023
My left leg is now swollen and painful. I can walk but stairs are pain in the ass.
Lymphedema? Noooooooooooo!!!
I don’t want to have fat + horrible leg(s)!!!! I must call emergency help line as the cancer centre is closed at weekends.
A young (I think) surgeon told me that I might be right but he thinks it could be venous thrombosis. He couldn’t tell unless I’m examined thoroughly. He told me to see the attending doctor tomorrow and perhaps wear compression leggings for now. He added not to massage the leg, yet.
OK… my agony continues… I thought it would be over soon but my estimate was way off…
4th of April 2023
Meeting with Dr. Kamiura
My left leg is weird. Looking very ugly and it hurts when I go up and down stairs, sit on a toilet, sit down and stand up chair. I can walk but very uncomfortable. I decided not take a cab today. I need to walk, I need to move my body. I don’t care if I faint. I need to walk.
My appointment is at 11:00. I left my house at 10:00. If I’m healthy it takes 30-40mins to get to the cancer centre. I was staggering, limping and vomiting… I had to rest many times but here I am – I finally arrived at the centre at 11:35. The digital board shows “Delay: 60 mins”. I knew it, 60 mins delay means 90-120 mins delay. But waiting for an hour gives me time to rest. I fell asleep on the sofa. It’s comfortable…zzz…
A nurse woke me and asked me “Have you done blood sampling, yet?” Blood sampling?? Shit, the ticket says so but I was too dizzy to notice it. Besides Gyn receptionist didn’t say anything. Aghw… But it went smoothly and my turn to see my doc seems to be still far away…
My turn has come at 13:00. I didn’t have to tell him much as he can see on the screen that I rang the emergency help line to complain about my left leg on Sunday. He promptly liaised with ultrasonography department and squeezed me in. He also got me a nurse to bring me a wheelchair. I politely refused but he wouldn’t listen. I got to see an ultrasonographer at 13:10. I kind of knew it why delay happens so often and so long. Emergency patients can jump the queue. Dr. Kamiura said that venous thrombosis is a terrible thing I need to find out now. He reckons I may have venous thrombosis.
A nurse took me back to Gyn waiting room. It was 13:35. Dr. Kamiura ever had time for lunch or loo?
Because the result of ultrasonography takes some time I had to wait to see my doc.
A nurse came to me – It’s time to see the doc.
I have venous thrombosis. Dr. Kamiura told me not to wear compression leggings, no massage and I must drink a lot of water. He asked me, “Are you OK? Is there anyone who can help you? Who does the daily shopping for you?” Of course I can’t explain how miserable my life is in this county. He’s too busy for crap stories and my lone life. “Oh, nooo, I’m fine, I can manage. I’m OK, doctor.”
He subscribed apixaban (sold under the brand name eliquis) to treat blood clots and acetaminophen (similar to paracetamol) for my pain. I had to ask, “Is it treatable?” “Of course, it is!” He answered with a smile. “However, if your condition doesn’t improve, you cannot start your chemo which is scheduled some time next week.” “I still haven’t received any calls from admission team, yet.” “Oh, really? Yes, you should be starting next week but as I said you cannot do your chemo if this continues. So I’d like to see you next Tuesday at… hmmm… does 10 o’clock suit you?” Yeeeees. Thank you.
I decided to take a cab to go home.
I am very tired. I’m going to bed now…
5th of April 2023
My left leg hurts like hell. But I still have to move my body to avoid ileus. On top of that my two ovaries, fallopian tube, uterus, greater omentum and lymph node – they are in heaven, right? But their ghosts give me enormous pain. It’s been exactly four weeks since they were gone but they seem to haunt me in a horrible way.
6th of April 2023
I fell from the stairs. Damn! I cannot stand up as my left leg is hurting intensely. Luckily I have no cuts or scratches. Phew! Because I now on apixaban (eliquis) I must avoid any tiny bleeding. I’m not allowed to visit a dentist, either. Otherwise bleeding will not stop.
I cannot get up so I stayed there for half an hour. Come to think… why I am so weak? OK, I have nausea, dizziness and abdominal pain. But things like this happens stronger body would really helps. I haven’t done any exercise for years. I have no muscles at all. I have been too listless. I should train my body so when something like this happens other parts of my body can help the weaker one. I slowly carefully got up I came back to bed. Thank God I only had bruises.
I ate a little bit of Stilton and slept for a while. It’s raining today – probably cherry blossom will be over soon because of this rain. They are so fragile that they don’t last very long. People who are planning a “Hanami” party this weekend they will see more leaves than blossoms.
Ohhhh my fuck!!!!!!!!! my “ghosts of lost organs” hurt real bad. My left leg is like an elephant and it’s bloody painful, too. Dizziness and nausea are stubbornly haunt me. I want to cry!!! Fuck!!!!!!!!!!!!!!!
8th of April 2023
My left leg has been hurting as if it’s about to fall off. I’ve been taking medicines since last Tuesday evening. Now it’s Saturday. Will it get better before I see my doctor Tuesday morning? I don’t think so. He has to come up with another idea to treat this. My chemo will definitely not happening next week.
It’s been exactly one month since my operation. I’m not doing well at all. Things seem to become worse and worse. I should have nine lives (I used some of them before) It feels like I used it all… when will I get better?
9th of April 2023
I have an excruciating leg pain. My ghost organs hurt as ever. Since I cannot move much I google a lot about many things. I have been looking into deep vein thrombosis (DVT) and by the look of my leg, well… lymphedema and venous thrombosis share the same vibes incidentally.
My left leg is still swollen. The left knee looks too hideous so I left off. The medicine is not working. I have to wear baggy trousers the rest of my life? I have no strength to cry. I’m exhausted.
10th of April 2023
My condition hasn’t improved at all and I am worn out + frustrated. I decided to email Dr. Yu (my RA doctor) and ask his opinion. Why my knee hurts so much? Do you think my VT is related to RA? Or can you do me an injection of steroid as usual? You told me not to take methotrexate for a while but how long should I stop taking it? I am meeting Dr. Kamiura tomorrow, is it OK to liaise with him “IF” you have an idea?
Dr. Yu returned my mail! “I can check your leg with echography and if I find anything suspicious I can give an injection to your affected area as always. Just come.” His email didn’t mention that he spoke to Dr. Kamiura but I totally trust Dr. Yu. He saved me many times with a shot. He is sooooo good at it. It works 100%.
11th of April 2023
I have an appointment with Dr. Kamiura at 10:05 today. I’ve been waiting for this day for ages. As I have to finish my blood sampling beforehand (takes time to get the results) I left home at 8:00. Oh no, it’s a rush hour! Despite the fact that I chose inconvenient car. I know everyone (well, 98% the passengers) get off at Osaka station I deliberately chose “Not” convenient car. Far from stairs, far from escalators etc. Still, people push me down, bump into my shoulder and kick me…etc. but Japanese people NEVER say “sorry” or “excuse me”. It seems it’s like their culture. I nearly fell several times. Never mind, it’s their custom. Why am I not taking a cab? – well, I’ll come to that later.
I arrived at the centre at 9:45. I did my best but it’s late. At blood sampling counter, about a hundred people were queuing. Aghw… I knew it – I have to be patient.
My turn has come. Done. My blood’s gone to the exam room. Now I’m ready to meet Dr. Kamiura. I’m used to wait here. Just be patient, patient. He told me:
- The result of my blood sample was good.
- Good to start chemo. Starts tomorrow!!
- I can see Dr.Yu if I want + if he finds anything funny I can get a shot on my left leg.
- Even if Dr.Yu cannot help me I have to stay at the centre two nights three days to start my chemo from tomorrow.
- He prescribed something for my urine problem.
By the time I said thank you + goodbye it was already just after 12:30. But the good news is I can see Dr. Yu!!!
I had a quick lunch and am now heading to his clinic now.
I arrived his clinic at three thirty. Surprisingly the queue is very short this afternoon. Anyway, he knows what my problems are. He found a dark large spot in my left knee as he operates echograph himself. He has this awesome technique that he carefully injects the right spot while operating echograph.
I came home at five. I suddenly felt exhausted. I was limping – I was dragging my feet all day. At zebra crossings I wait for the green light + start walking when it turns green but I cannot reach the other side of the crosswalk while it’s still green. It was a tough day. I was desperate. But I’m glad I managed to get a shot.
12th of April 2023
I finally got on the cab and arrived at the centre. I went to the admission counter to go through the procedure + COVID test but the person in charge told me to see a doctor before moving forward.
I saw a young doctor (Dr. Kamiura is probably operating today.) he asked me how I was. I said I’m not well. He went through the results of my blood test and and said, “I don’t know what Dr. Kamiura said to you yesterday but… looking at this result you don’t seem to be quite there yet. I’m my opinion your body is too weak to go through a chemo. We want the patients to be 100% healthy when they receive a chemo but you are not at all healthy. So I’d say you should build up your energy first, consult with Dr. Kamiura. Chemo can wait. Go home. “
So… I was sent home. I had a mix feeling – I’m glad I came home. But as I have no idea when I become healthy enough to go on a chemo.
I slept. I slept and slept…
I came home at five. I suddenly felt exhausted. I was limping – I was dragging my feet all day. At zebra crossings I wait for the green light + start walking when it turns green but I cannot reach the other side of the crosswalk while it’s still green. It was a tough day. I was desperate. But I’m glad I managed to get a shot in the end.
I arrived his clinic at three thirty. Surprisingly the queue is very short this afternoon. Anyway, he knows what my problems are. He found a dark large spot in my left knee as he operates echograph himself. He has this awesome technique that he carefully injects the right spot while operating echograph.
12th of April 2023
I am staring a chemo. I’d already packed everything and get ready to go to the centre. But I am not feeling very well. I kind of passed out several times. I have no stamina. I have no strength. Severe nausea and dizziness stop me from doing any little thing. I called the centre that I’d be late as I am feeling unwell. Besides it’s raining heavily today – it will be difficult to find a cab.
I finally got on the cab and arrived at the centre. I went to the admission counter to go through the procedure + COVID test but the person in charge told me to see a doctor before moving forward.
I saw a young doctor (Dr. Kamiura is probably operating today.) he asked me how I was. I said I’m not well. He went through the results of my blood test and and said, “I don’t know what Dr. Kamiura said to you yesterday but… looking at this result you don’t seem to be quite there yet. I’m my opinion your body is too weak to go through a chemo. We want the patients to be 100% healthy when they receive a chemo but you are not at all healthy. So I’d say you should build up your energy first, consult with Dr. Kamiura. Chemo can wait. Go home. “
So… I was sent home. I had a mix feeling – I’m glad I came home. But as I have no idea when I become healthy enough to go on a chemo.
I slept. I slept and slept…
If you suffer from similar situation or just want to talk to someone you are more than welcome!! Please just email me here ↓↓
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