偶然認識了一位香港家長,他的兒子患有粒線體病,和我是同一種,也是火星人的病人。我問,媽媽和弟弟會退化嗎?他說理論上不會,因為成年發病很罕見,尤其媽媽已經年紀不輕,但弟弟應該去做基因測試——遺傳科的覆診期在明年三月,我還未告訴媽媽,就讓風平浪靜的日子多維持一會兒吧。
放下心頭大石後,我和他聊起三個月來的不適。他說,若頭痛、嘔吐兩者同時出現,基本上與我體內的基因突變脫不了關係。「可是,」我告訴他:「兩星期前我突然沒再吐了,頭痛也似乎緩和了些。」我明顯感到自己的情況在逐漸好轉:神智比一兩個月前清醒不少、昏昏欲睡的時間大幅縮短、吃得下喜歡的食物,就連做功課的速度都加快,間中更可減掉部份止痛藥。他回應道,是啊,這病的進程正是如此,你這次應該是小型的「類中風發作」(stroke-like episode)。小型發作後的數月,缺血的粒線體會慢慢自行修復,而在這段期間裏,你將會經歷形態不定的頭痛和嘔吐。它們終會消失,你會不再吐,頭沒那麼痛,直到下一次發作。
看見最後一句,我忽爾情緒崩潰,嚎哭着留言給朋友:「假如以後要不斷經歷相同的折磨,倒不如直接發病,退化死掉算了。」說我從來沒有把身體前所未有的反常跟粒線體病聯想起來,肯定是騙人的。只是,四年了,再過四個月便五年了,我還是到最近才有些患病的實感、才驚覺自己原來這麼不堪一擊。這位爸爸叫我回去找火星人,說他是個難得一遇的好醫生。我問,覆診能讓我不再頭痛嗎?不能,醫生同樣只能開止痛藥,而藥物對粒線體病造成的頭痛未必有顯著效用;覆診會對媽媽和弟弟更有幫肋嗎?他們不是火星人的病人,但我是,我可以帶他們求醫——不會,既然他們尚無症狀,也就沒有治療的需要。粒線體病有得治嗎?沒有,但火星人至少可以為你照MRI,畢竟CT無法全面反映你腦部受損的情況。我靜默良久,任性地拋下一句:「I hate MRI.」
你們都不知道,這三個月我到底過得多麼辛苦:天天吃十幾顆止痛藥,偶爾吃完頭仍是炸裂地痛,還得瞞着媽媽偷偷吃,不敢讓她發現我其實未好;一次次跑去廁所吐,有時走着走着莫名其妙就吐了,連為什麼吐都搞不清楚,吐完還得若無其事返回辦工室座位,繼續完成畢業要求之一的無償實習;藥錢很貴,當一顆一至兩元吧,我一天起碼吃十顆。要是臨急買不到強力止痛藥,還得去診所看醫生。然而我因為不舒服,兼職請了好多天假,推掉好多次補習,並因而失去一個學生,把多出來的精力和時間,全花在上學但physically absent、做功課但爛grade、躺在沙發睡覺卻被媽媽問為何我如此清閒之上...我真的十分慶幸自己一向像頭任勞任怨的牛,平日到處打工補習𢱑獎學金儲下一筆錢,才得以暫時不受經濟壓力所困。好不容易熬到學期尾,眼看劇吐消失、頭痛減緩,我總算苦盡甘來開始復活,沒想到你居然狠狠贈我一拳說,這是個episode,所以有第一次,自然有第二三四次,直到發作或大或小地重複傷害我的大腦,人生用倒行的方式走到盡頭為止。
然後你旁觀者清,好心相勸,回去看醫生吧,是時候去處理問題的真正根源:「你有一半正常mitochondria copy,要好好保護。由50%正常去到30%正常,可不是差了20%那麼簡單。」
我不禁想起一句非常切合我當下心情的歌詞:「我本人,從來未稀罕悲壯傳奇;我本人,寧願為加班筋歇力疲。」我不過是希望順利唸完大學,找份安穩工作,平平淡淡地度過一生而已。
stroke ct 在 Jenn’s 沬厤 Life After Cancer #spreadlovecreatehope Facebook 的最讚貼文
☂️Day 5 Updates
It all started from a high fever.
On Tuesday midnight, things got worse. He was admitted into emergency room.. He can't talk. Cannot recognize anyone. Looked confused and mumbled words that no one can understand.
We were all so worried. Without further hesitation, we all bought flight home on Wednesday morning. Informed our employers of the sudden incident and requested for urgent leaves.
Doctor said his condition was critical.
We thought it was stroke.
But CT scan report came out clean.
We thought it was blood infection..
But blood test came out fine... Lastly, doctor said it might be meningitis..
So he did Lumbar Puncture test..
And doctor was right!!
Dad was infected by some bacteria in the brain.
His condition now is still not stable.. Picking on air/ clothes and blanket.. And all the weird behaviour.. He soiled himself too.
What a news?
Imagine of how I feel when my dad can't recognize me.. 😭 despite me trying to tell him about our past memories 😭 and things that we did together..
Too sudden! And too hard to accept.
Hopefully dad will get well soon!
❤️🌈
#ahjenn #lifewithcancer #secondchance #cancer #cancerquote #cancerawareness #cancersucks #nevergiveup #CancersBeLike #icancervive #cancerlookslikeme #iamacancersurvivor #cancersurvivor #itsover #jennslifeaftercancer #creatingcancerawarenesswithjenn #creatingawarenesswithjenn
stroke ct 在 Lee Hsien Loong Facebook 的最讚貼文
We were having our weekly Cabinet meeting just now when Heng Swee Keat suddenly collapsed. The doctors in Cabinet (we had three present) attended to him immediately. We called an ambulance, which took him to TTSH. A CT scan showed that he had had a stroke. Doctors are attending to him now. Hope Swee Keat will be alright - he is a valuable member of my team. - LHL