Rare voices · Letter 11 of 12

A Letter to Amy from Wang Zheming, a Tenosynovial Giant Cell Tumor Patient

A Letter to Amy from Wang Zheming, a Tenosynovial Giant Cell Tumor Patient

English translation

Dear Amy,

What I have is tenosynovial giant cell tumor (TGCT), a disease that eats away at bone.

My own lesion is in the knee joint. In 2024, through drug control and surgical treatment, my life is now unhindered except for strenuous exercise.

Thinking about it, it's quite amazing—I got this disease just as I started my freshman year, and now I'm already a junior. Before long I will also go from being a student to a working professional, ushering in a change of identity.

If you were to ask me what I have learned since getting a rare disease, I think it's that plans can't keep up with changes. In my freshman year I was full of ambition, starting a new life in a new place, with my parents not around and no one to rein me in. But once I learned I had this rare disease… all I can say is, man proposes, but Heaven disposes—haha.

Here I also want to say to Amy: sometimes, when things turn out as you wish, that's great; and when they don't, that's okay too. Life is unsatisfactory eight or nine times out of ten. Many things are simply fate—just do well what you can do in the present, and that's enough.

—— Zheming

中文原文

腱鞘巨细胞瘤患者汪哲明写给Amy姐的一封信

亲爱的Amy姐:

我得的是腱鞘巨细胞瘤 (TGCT),它是一个会吃骨头的病。

我自己的病灶在膝关节,2024 年通过药物控制和手术治疗,目前除了剧烈运动,生活已无碍。

这样想想也是很奇妙,自己大一刚入学的时候得了这个疾病,如今已是大三。

再过不久也将从学生变为职场人,迎来一个身份的转换。

期间你要问我自从得了罕见病之后学到了什么,我想就是计划赶不上变化吧。

大一时候我踌躇满志,在新地方开启新生活,父母也不在身边,没人管束我。

但当我知道我得了这个罕见病之后……

只能说,人算不如天算了哈哈哈。

在此也想对Amy姐说:有时候,结果如意那很好,结果不如意那也没关系。人生不如意十之八九,

很多事情,就是命,把当下能做的做好就可以了。

—— 哲明