#11 当たり前は当たり前じゃない-6

２００３．９．２(火)
　のうのう時的な日常から打って変わって，今日から再び治療が始まった．その治療の中でも大嫌いな抗がん剤がある．その名も「メソトレキセート」なぜこれが嫌いかと言うと，ズバリありえないほどの口内炎ができるからだ．副作用で口内炎が異常なくらいできてしまうのだが，それを防ぐために，日中はずっと口の中に氷を入れておかないといけないのだ．さらに，この氷対策と同様に，嗽対策もしなければならない．ロイコボリンという嗽薬を使うのだが，これがまぁマズイ．しかし，この嗽をするとしないで口内炎の程度に驚くほどの違いが出てくる．本当に副作用なんて起きるのかな？なんていう甘い考えで，前回の治療時に氷と嗽をサボってみたところ，ものの見事に口内炎が出現し，口に中がただれにただれてしまった．やはり，経験というのは大事だなと実感した．
　昨日のカップ麺，撤去命令により，親にお願いしてロッカーのカップ麺等をすべて持って帰ってもらった．飲み物も糖分が入っているものはダメと言われたが，これは譲れない．退院のその日まで，なんとか死守しよう．そう心に決めた．行動の自由と食事の自由を奪われ，飲み物の自由まで失われたら，たまったもんじゃない．でも，親とも話したけど，自分のことを想って言ってくれた看護師さん．そのことに感謝しなければならないのに，それよりもムカつく感情が優ってしまった．まだまだ子供です．幼いです．そう思っていたら，ルンバールの跡が痛くなってきました．バチが当たったのかな．ごめんなさい，そしておやすみなさい．
 
２００３．９．３(水)
　今日の採血で，またも探られてしまった．いったかったぞ，ちくしょう．右で２回，左で３回．いてぇ．針をもっとうまく扱える先生に出会いたいもんです．前回まで自分のことを診てくれていた先生は，口の利き方とかに嫌な感じがあったけど，技術はすごくて，採血では１回も痛い思いをしなかった．なんだか，複雑な心境です．ひとまず，我慢しましょう．我慢して待って入れば，きっと良いことがやってくるでしょう．
 
２００３．９．４(木)
　今日，Kさんが退院された．隣の部屋にいたAさんも退院された．仲良くさせてもらっていた２人がいなくなってしまうのは，嬉しいことだけど，残された人間にとっては寂しい気持ちもあります．複雑．でも，Kさんの退院後，以前から仲良くさせてもらっていたHさんが入院してきたので，その点では少し嬉しかった．明日からまた違う病棟生活が始まります．楽しく行こう．
 
２００３・９．５(金)
　今日の目覚めはとても良かった．だが夕方になって急に寒くなってきて，体温測ったら３８度越え．今入れている抗がん剤は以前もお伝えしたメソトレキセート．口内炎を大量発生させることで有名なこいつは，もう１つの嫌な顔がある．それは，ほぼ必ず発熱させることだ．本当に嫌なやつです．しっかし今回はそのタイミングが早すぎる．．氷もサボらずやっていたのに口の中はただれまくってしまい，食べたいものが食べられない．喉の痛みも強く，現在の食事は点滴に頼っている．空腹感があるだけに，食べられないのは辛いものだ．
　さらに，今日は看護師の対応の悪さに頭がきた．熱が出てきたとある看護師に伝えたら，「ちょっと待ってて」と２時間の待機．ちょっとって２時間なのか！？結局，解熱剤が投与されたのは報告してから４時間後．なにしとんじゃい！！自分がまだ１６歳だから良いけど，これが高齢の方だったらマズイんじゃないんだ？これで容体が悪化したら取り返しのつかない問題になっちゃうと思うんだけど．少し見捨てられているんじゃないかと感じた１日でした．
 
２００３．９．６(土)
　蓄尿が面倒臭い．今，１日の尿量を計測してもらっているのだが，この作業がとても面倒臭い．今，入院している部屋は大部屋で，部屋内にトイレがあるのだが，そのトイレでは蓄尿できる設備がなく，蓄尿専用のトイレがあって，そこで蓄尿しなければならない．蓄尿する患者はどういう患者かはわからないが，少なからず，複数いる．しかし，蓄尿トイレは１人しか入れず，時間帯によっては行列ができている．なんとも非効率な．しょうがないのでしょうかね．他の病院もそうなのでしょうか．母に聞いてみよう．
　さて，本日は熱も下がり，だるさが少々残っているだけとなりました．口の中は相変わらずだけど，熱が下がっただけでもだいぶ楽になった．しかし，これまでに何度も経験したメソトレキセートだったが，今回は反応が少し違っていた．主治医に訪ねたが，量は変わっていないらしい．ということは，少しずつ自分の身体がなんらかの変化をしてきたということなのだろうか．少しずつ，身体が疲れてきているのかな．頑張らねば．．．
　そして，今日は兄貴が見舞いに来てくれた．兄貴は今大学の夏休み期間で，明日東京のアパートに帰るらしい．９月で夏休みってすごいな！大学の夏休みは長いのですね．そんな兄貴はこの夏休みで車の免許を取るために自動車学校に通っているのだが，親父が勤めている自動車学校で，親父曰く危なっかしくも一応今のところは順調に来ているらしい．車の試験はどういうものかわからないけど，ひとまず合格っていうのは良いことですから，良かったですよね．それにしても，兄貴は病気の弟を持ってどういう心境なのだろうか．自分に弟や妹がいないから，想像することしかできないけど，でもきっと複雑な心境なのかな．直接聞いたこともないし，親に聞くことでもないかもしれないけど，でも聞いてみたい．自分とは違った辛い感情を持っているかもしれない．御免なさい．散々迷惑かけてきて．でも，ありがとう．まだ面と向かっては言えないけど，いつか言えるように今を頑張ります．
 
２００３．９．７(日)
　昨日よりも，幾らか喉の痛みが和らいできました．口からの摂取，水分だけ生活も少し慣れてきた．まだまだ口の中は荒れ放題だけど，なんとかできている．口の問題は本当に厄介だと実感．健康体でいた時も，口内炎一つできただけで騒いでいたけど，今はそんなの比じゃないし．ちょっと良くなったと思って調子にのったら，かさぶたが剥がれてまたすぐ出血するし．本当に口の問題は厄介です．
　また，今日はおばあちゃんが見舞いに来てくれた．積もる話もあったろうに，今の自分の現状を見てあまり多くを話さなかった．せっかく来てくれたのに．早く治してまたち話そうね．
 
２００３．９．８(月)
　今日の採血，またまた探られた．前回のがトラウマになっていて，左でやって欲しいと伝えたところ，なぜか「右でやらせてくれ」と．そしたらこれだよ．俺は実験台じゃありません！！この先生は，表面的にはとても良い印象を与える先生なんだけど，ちょっとした時の一言が足りなくて，それが少しずつ積もって，ストレスに感じているのです．聴診器あてる時に「胸の音聞かせてね」とか「聴診器，少し冷たいけど我慢してね」とか，そういうのが全くなくて無言で始めたり．運動部に入っていなかったのでしょうか．礼儀ではないとは思うけど，何かが足りない，物足りない．そう感じた１日でした．

つづく

2003.9.2 (Tue) The treatment has started again today, after a change from the usual routine. Among the treatments, there is one anti-cancer drug that I hate. The reason why I hate it is because it causes unbelievable mouth ulcers. The side effect is that I get an unusual amount of mouth ulcers, and to prevent this, I have to keep ice in my mouth during the day. To prevent this, I have to keep ice in my mouth during the day. I use a mouthwash called Leucovorin, which is not good. But if you don't rinse your mouth, you'll be surprised at the difference in the degree of mouth ulcers. I wondered if there would really be any side-effects. The last time I skipped the ice and rinsing at the last treatment, the mouth ulcers appeared and the inside of my mouth became sore and sore. I realised that experience is very important.　Yesterday's cup noodles were ordered to be removed, and I asked my parents to take all the cup noodles and other items from my locker back home. I was also told that drinks containing sugar were not allowed, but this was non-negotiable. I will somehow protect myself until the day I am discharged from the hospital. I made up my mind to do so. It would be terrible to lose my freedom of movement, my freedom to eat, and even my freedom to drink. But, as I said to my parents, the nurses who said this to me were thinking of me. I should be thankful for that, but I was more pissed off than that. I'm still a child. I'm still a child. When I was thinking about it, I felt a pain in my Rumbaar's scar. I must have been hit by a wasp. Sorry and good night.

2003. 9. 3(Wed) I was probed again at today's blood collection. I wanted to, damn it. Twice on the right, three times on the left. Ouch. I wish I could find a doctor who can handle needles better. The doctor who had been taking care of me until last time had a bad way of talking to me, but his technique was great and I didn't feel any pain when he took my blood. I have mixed feelings. For the time being, let's be patient. If we wait patiently, something good will surely come.

2003. 9. 4 (Thu) Today, Mr. K was discharged from hospital. Mr. A, who was in the next room, was also discharged. It's a joy to lose two people who have become good friends, but the people who are left behind also feel sad... It's complicated. However, after Mr K was discharged, Ms H, who had been a good friend of mine for a long time, was admitted to the hospital, so I was a little happy about that. Tomorrow we will start a different ward life. Let's have fun.

2003.9.5(Fri) I woke up very well today. But it suddenly got cold in the evening, and when I took my temperature, it was over 38 degrees Celsius. The anti-cancer drug I'm on is methotrexate, which I've already told you about. It is famous for causing a lot of mouth ulcers, and has another nasty face. It almost always causes fever. He's a real prick. But this time the timing is too early... I've been doing ice without skipping a beat, but I've got sores all over my mouth and can't eat what I want. My throat is sore and I'm on intravenous drip for food. It's hard not being able to eat because I feel hungry.　Furthermore, I was annoyed by the poor response of the nurses today. When I told a nurse that I had a fever, she told me to wait for two hours. Waiting for two hours? In the end, the antipyretic was administered four hours after I reported it. What the hell are you doing! I'm only 16 years old, so it's OK, but wouldn't it be worse if it was an elderly person? If his condition deteriorates, I think it would be an irreversible problem. I think I'm being a bit neglected.

2003.9.6 (Sat) Storing urine is troublesome. I am now having my daily urine output measured, but this process is very troublesome. The room in which I am staying is a large room with a toilet in the room, but there is no facility for urine storage in the toilet, and I have to store urine there. The patients who store urine are not known, but there are more than a few. However, only one person can enter the urine storage toilet, and there is a queue at certain times of the day. This is very inefficient. I guess it can't be helped. Is it the same in other hospitals? I'll ask my mother.　Today, my fever has gone down, and I only feel a little sluggish. My mouth is still as bad as ever, but I feel much better just because the fever has gone down. However, although I had experienced methotrexate many times before, this time the reaction was a little different. I visited my doctor, but he said that the dosage had not changed. Does this mean that my body is gradually changing in some way? Is my body getting tired little by little? I have to work harder...　My brother came to visit me today. He's on summer holiday at university, and he's going back to his flat in Tokyo tomorrow! Summer holidays at university are long, aren't they? He is going to a driving school to get his driving licence during this summer holiday, and he is going to the driving school where his father works, and according to his father, he is doing well so far, even though he is in danger. I don't know what the car test is like, but it's good to pass for the time being, so that's good, isn't it? I wonder how he feels about having a sick brother. I don't have a younger brother or sister, so I can only imagine, but I'm sure he must be having mixed feelings. I've never asked them directly, and it's probably not something you should ask your parents, but I'd like to hear about it. They may have different and painful feelings from me. I'm sorry. I've caused you a lot of trouble. But thank you. I can't say it to your face yet, but I'll do my best now so that I can say it one day.

2003. 9. 7 (Sun) The sore throat has eased somewhat from yesterday. I'm getting used to taking in food by mouth and drinking only water. My mouth is still a bit rough, but I'm getting by. I realise that mouth problems are a real nuisance. Even when I was healthy, I used to make a fuss over a single mouth ulcer, but now it's nothing compared to that. When I think it's getting better, the scab peels off and it starts bleeding again... Mouth problems are a real nuisance.　Also, my grandma came to visit me today. She must have had a lot to talk about, but she didn't say much because of her current situation. Even though she came all the way here. Let's get well soon and talk again.

2003. 9. 8 (Mon) Today's blood sample was taken, and I was probed again. I was traumatised by the last time, so I told them I wanted it done on the left side, but for some reason they said, ‘Let me do it on the right side’. Then this happened. I'm not a lab rat! On the surface, this doctor gives me a very good impression, but he lacks that one little word, and it's slowly building up, and I'm feeling stressed out. When he uses the stethoscope, he never says, ‘Let me hear your chest sound’ or ‘The stethoscope is a little cold, but please be patient’, he just starts without saying anything. I wonder if she was not in an athletic club. I don't think it's politeness, but something is missing, something is missing. It was a day when I felt that way.