Girl with Rare, Terminal Cancer - “I still want to fight!”

Video Music: www.bensound.com 

90多磅、骨瘦嶙峋，一邊腿卻粗如腰肢。
八九吋大的腫瘤，壓得舉步為艱。
求診八個月，由「你肌肉發炎唧！」至最終確診罕見的「骨肉癌」。
「第四期了，唔會有第五期㗎喇！」
縱然醫生斷言「得3個月命」......
惟她堅拒放棄：「我唔怕死，但我一定要堅持去生存囉！」

求醫8個月　被當肌肉發炎

“I got diagnosed with ASPS - Alveolar Soft Part Sarcoma - in March this year. It is a kind of bone cancer.”

In July last year, Colour (LO Wai Nam) had an accident at home in which she had an injury around her pelvis. Since then, she has never lived a day without immense pain. “Sometimes it would hurt so bad in night time that I would not be able to sleep, twisting and turning - not unlike those victims in the Exorcist!” Colour went in and out of the hospital numerous times, seeking help from a dozen of doctors from all sorts of specialites, who had all jumped to the conclusion that it was muscular inflammation and dismissed her after prescribing regular pain killers and muscle gels for her. “How is it possible for a simple inflammation to hurt that much, and last for that long?” Colour requested for further investigations from these doctors, but kept getting rejected as they all didn’t consider it necessary.

Towards the end of last year, while the intense pain sustained, she started having high fevers and losing weight drastically. “I was devastated and desperate, because there was no way to get better.” She was eventually referred to another TCM doctor, who had recommended her to get an X-ray for consultation with an orthopedist. That’s when she finally found out the source of her dreadful pain - there is a very rare malignant tumour in her pelvis, which had by then already spread to her lymphatic system and lungs. “The doctors told me it was in Stage 4, and that there would not be Stage 5 - because I probably would not live past that,” Colour recalls.

「大髀腫如腰 好似想爆」

Colour might have sounded indifferent, but her calm tone did not conceal her desperation from the continuous pain, which has been making it difficult to even just stand up. During our interview, Colour had been restless and couldn’t sit still, because she needed to keep shifting and finding new posture to alleviate her pain from staying in the same position for too long.

Unable to absorb nutrients from her food efficiently, she gets tired very easily, her body frail from the weight loss as well. Her boney frame contrasts largely to her right thigh, which appears almost as thick as her waist.

“The worst part is the swollen thigh - it feels like it may explode any minute,” Colour shared her frustration over her right thigh, which has swollen tremendously to a circumference of 22.5 inches, whereas her left thigh only measures 16 inches.

Agnogenic symptoms, unfortunately, is a woe commonly suffered by patients of rare diseases. “The doctors don’t seem to fully understand why this is the case, either. They suspect that the swelling could have something to do with some dead tissues in my bones,” with swollen tissues in her right thigh pressing on her nerves, together with blisters at the bottom of her feet, Colour is in so much pain whatever she does. Even though the bathroom and kitchen are only a few steps away, Colour will still have to lean on cranes and wheeled chairs heavily when moving around her small apartment. From time to time, her family will come over to help out with daily chores and prepare meals for her, as she is bedridden by her immense pain most of the days.

“The pain only gets worse, never reaching the worst”

「普通嘅止痛藥，已經止唔到我嘅痛楚。」現在Colour每天需服用嗎啡丸，由最初只食半粒，至今多達4粒，但痛楚依然未肯放過她。「痛得好緊要，喺心入面痛出嚟。全隻腳都痛囉，痛到醒，完全瞓唔到覺。」Colour一星期總有幾天痛醒，沒有充足的休息，長期處於精神欠佳狀態。

跟Colour對話，不難發現，一句說話她總重複多次，像是從未說過般。「我食得藥多，成日冇記性！咦，我食咗藥未呢？」故她掛上一幅黑板，幫自己記下服藥狀況。

ASPS病症佔全數惡性腫瘤病症中的0.1%，病例少，暫未有任何醫治方法，標靶藥、電療、化療、手術，統統幫不上病情，「只有一種免疫治療針，可以控制病情唔擴散，但唔係醫治到。」無選擇下的唯一選擇，Colour只能以免疫治療防惡化。

「你都未籌到錢，仲過嚟做乜？嘥晒大家時間！」醫生指，免疫治療針每支盛惠 $20,700。原本3月應該開始，但因籌錢需時，５月下旬才開始第一針；之後每三個星期注射一支，醫生安排先注射４支，待觀察情況後，未來或要連續打２年。然而，三針過後，腳腫問題依舊十分嚴重，右腳也只能長期穿拖鞋。

「因冇上腦」 不獲資助

「就係因為冇上腦，所以冇得申請基金去援助我打針嘅藥費。」因情況「不夠嚴重」而被拒諸門外，她需獨自背負龐大的開支。除免疫治療針，她每天服用如薑黃素、維他命B2等十多種補給品，提升免疫力，每月花費數千。至於出入用的二手輪椅及步行架，都是之前買下，積蓄早已所餘無幾，幸有朋友為她張羅眾籌。

確診後，Colour經朋友介紹，曾到中環一治療中心接受免費另類療法，惟每天來回天水圍及中環，在車費和體力上也是一大挑戰。還幸，她在網上求助時，獲一班有心人幫忙義載。惟，她右腿腫痛越見嚴重，已無法步行前往治療必經的梯級而放棄了。

「如果其他人，冇咁多方法去諗、去幫助自己，我諗佢哋都係喺屋企等死咋……」時刻提醒自己要正能量，惟笑着說的她，看上卻帶着幾分無奈。

感恩遇上昔日的自己

訪問過程中，Colour雖偶有埋怨，但更多的是感恩，在她眼中，好人好事常在。她得到了很多人的幫助，可沒視為理所當然。「義務幫我嘅朋友，真係好感恩有佢哋。如果好返嘅話，我會承諾更加多幫個社會，回饋返社會。」患病前，她已當了8、9年義工，更曾出錢出力籌備不同活動。她不下一次提到，希望康復後，能加入Lifewire服務其他病童。

「珍惜身邊所有人、珍惜生命、珍惜所有自己擁有嘅嘢，你唔會知道幾時冇明天嘅…」一場大病，令她悟出更深切領會。

「我唔係好想死」

「點解會選中我？」回想最初得知自己罹患惡疾時，Colour完全崩潰，斷絕了所有朋友的聯絡！「好多朋友打電話嚟，話想過嚟探我，我都接受唔到。」求生意志超強的她，當得知負面情緒會令病情惡化時，立即調節自己的心情，逐步接受這現實。「個天要俾我接受呢樣嘢，選咗我，就要行呢條路囉。」

翻看Colour舊照，大好年華，綻放飽滿紅潤的光芒，跟眼前嶙峋的我見猶憐，更令人感慨。但她卻自言充滿動力，勇敢面對，積極醫病，「醫生都話得3個月命，但我已經過咗3個月，我覺得自己會好返！我唔怕死亡，但我一定要堅持去生存囉！
 
「我唔係好想死！其實我係諗住結婚生BB㗎，咁我咁嘅歲數，我唔覺得應該冇咗個生命！」看着鞋櫃內的「戰利品」，Colour平靜地說：「呢啲鞋以前買咗，未著過，宜家唔使返工，無得著。等遲啲好返，先再儲靚鞋啦！」

此刻，她只有一個目標：「希望啲藥可以喺身體擴散，唔使再坐輪椅，可以自理生活、自理食嘢、去廁所啦、行走，落街……我希望係咁樣做返一個正常嘅人！」

採訪、撰文：林穎怡、梁劍紅
編審：梁劍紅、Avy Ip
攝影：Sea.Pho.Yea
影片製作：Lifewire、Aiden Mak、Sea.Pho.Yea

This cause's reference number is「 3615 」

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【Colour圓婚紗夢】

「我宜家唔痛喇！」「好感動」

穿起婚紗的Colour，忘卻骨肉癌的痛楚，流下感動的眼淚，不斷道謝。
 
她與狗狗Oscar許下承諾，「呢世我照顧你，下世你照顧我」。

 

 

為了幫Colour圓人狗婚紗夢，大家一呼百應出動；為了試婚紗，抬着數十磅的電動輪椅上數十級樓梯，披荊斬棘。

惟看到Colour重現笑臉，大家只覺一切也值得。

集結力量，繼續送上愛與祝福，歡迎到Facebook留言打氣、捐款或分享她的故事。

鳴謝各方好友
婚紗提供：1.618 Couture & Bridal
攝影團隊：Ace、Abby @A+Mission
化妝及髮型：Joe W
義載：Fai & 黃先生
採訪及拍攝：Lifewire、Sea.Pho.Yea、米紙
統籌：海、Rochelle @Lifewire

2021年8月更新

【號召成功】義工送家中

身體虛弱的Colour，早前家中受爆渠困擾，不慎傷及腰臀。
幸好各位得悉後，都立即踴躍報名成為義工，希望可以出一分力幫助Colour。

 
上星期六Lifewire和有心人Jackie、Bowie出動，到Colour家中幫她家居大清潔、執拾雜物等等。

之後大家都陪伴Colour暢談一番，使她恢復了精神和活力。

「大家同我傾偈、陪我，即刻冇咁痛 」
可惜地方有限，所以未能安排太多義工， Lifewire日後將會再安排其他已登記的義工進行探訪。

請大家一起為Colour打打氣，讓愛漫延。
歡迎到Facebook留言打氣、捐款或分享她的故事。

2021年6月更新

偶然看到Lifewire分享個案Colour Lo的情況後，香薰花園 (Aroma Synergy) 的創辦人Vivian主動聯絡了我們，希望可以安排探訪。「作為香薰治療師嘅我最想做到，就係可以幫助身邊嘅人。」看著Colour言談間不時流淚，過來人的Vivian與 Colour 分享自己以往的患病經歷，憶述她在第一次接受輸血時也哭了，但她形容這全都是感動、感激和開心的眼淚。有緣千里來相會，意外得知雙方的生日都是在同一天，她們就像情同姊妹般彼此鼓勵。

「希望能用我最大努力可幫助她舒緩壓力及痛楚。」Vivian 以香薰油為Colour 按摩，又教她簡單的自我按摩法，令Colour十分感激。探訪接近尾聲，臨走前 Colour 主動與 Vivian 握手，彼此四手緊握良久，Colour 將自己內心的感謝完全傳達給有心人，Vivian 亦留下按摩油給Colour 日後使用。

這次探訪，給Colour 帶來正面力量！「我們無法選擇病與唔病，但可以選擇勇敢去面對，我希望每個人都可擁抱健康及快樂。」

2021年4月更新

你們的支持賦予我力量

「我唔怕死，但我一定要堅持去生存囉！」
求生意念超強的 Colour ，每三星期便要注射免疫治療針或服標靶藥「吊命」。
免疫治療每針$20,700，但你們捐贈的不僅是金錢，而是贈予她一個生存的希望。
已努力捱過連串治療的Colour，仍抱著「我會好返」的信念活下去，你們會支持她嗎？

請大家參與每月捐款，給予Colour 生存的信念。
 
2021年3月更新