爸爸走了，

heping

原帖由 共创奇迹 于 2008-11-17 02:50 发表
自从爸爸确诊脑转后，死亡的阴影就时不时来烦扰。现在感觉就像和时间赛跑，希望能赶在时间的前面多为爸爸做点什么。可是时间走得太快了，不知道累，永不休止的往前冲刺。两个多月爸爸就脑转了，虽然除了上班，做饭和 ...

After reading this post, I understand that we are in the same boat, I am also away from China and it seems that I can not do anything beside just calling and telling him what to do. I admire those who are with the patient.
Just recently I learned a kind of "站功" from a Chinese guy, which I found out very helpful to relieve the pains in my knees. To tell you the truth, I did not believe this until I found out it really helps, all other exercises like walking or jogging won't help based on my experience.
As for your husband, I think you'd better ask/encourage him to get involved to help you. He may feel that you have totally ignored him and fully occupied with your family members. I do not think he is not sympathetic. Man sometime is not sensitive as woman and often awkward in expression of feeling.

heping

帖子发重了

[ 本帖最后由 heping 于 2008-11-18 03:11 编辑 ]

共创奇迹

Hi Heping, many thanks for your post.

It is very difficult to be so far away when our family need us most. But life is full of limitations anyway. The best we can do is try to balance it. It is encouraging to see that so many of us are trying to fight for our loved ones, besides them or not.

Take care of yourself. Do you have arthritis？If so, I may be able to share with you some home treatment a few days later.  I am reading a book written by Dr. Campbell, who claimed that he could CURE patients with arthritis and had successful done so for many times. The program involve a dietary change and simple excises.

I just read a few pages last night and need to dig out more info. Anyway it is worthwhile to try. If you don't try you'll never know. I am happy that you tried something which is useful to your pain (you are quite forward thinking and adventurous if my feeling is right). I am interested in the "站功" as well. Is there any web link for this?

I totally agree with your point. My husband felt he was ignored. I will pay more attention to him and try to get him invovled (don't know how yet, but will try).  It is not easy to juggle work, family and taking care of patient. I'll need to become more adaptive.  We live and learn, don't we?

[ 本帖最后由 共创奇迹 于 2008-11-18 18:03 编辑 ]

共创奇迹

和朋友聊聊天，看看春暖花开的帖子，觉得心情好多了。我是前天的时候情绪跌落到了最低谷，到现在已经度过了低谷期，希望接下来能冲刺到高峰期：）我回顾了一下，觉得自己是不能真正接受我爸爸脑转的事实，有点焦虑过度和急功近利了（这可能是病情恶化时大家都比较容易遭遇到的情绪，一定要小心，不要被负面情绪给打倒）。连爸爸自己都说他不把这当回事，现在都提倡与瘤共存。我的焦虑不定还会影响爸爸的好心态，惭愧！刚刚看到“老公状态很好,那可都是我的功劳.我告诉我老公,如果他想早些离开我们，那就每天愁眉苦脸.如果他想和我们在一起,那就不管身体有多么痛苦,多么难过,都得开开心心的,因为这比吃药还重要.一个人发怒或者悲伤,那么他呼出来的气足可以毒死一只鸡“，呵呵，看来我也在喷毒气，幸亏大家不是鸡，没被毒倒还施以援助之手。但是我也得小心修炼，不要继续喷毒气才好，最好是口吐仙气，超度众生 ；）

heping

Do you have arthritis？
I am not sure, but this pain happens for sometime already, and it is progressive as time goes by.

If so, I may be able to share with you some home treatment a few days later.  
Thank you, any info will be welcome and I am open to any option, because I have never thought that purely "standing still 站功" can help in the past.

Is there any web link for this?
No, there is no link for this, because this guy live here and he just teaches locally. I went there twice, and then just practice at home.

I totally agree with your point. My husband felt he was ignored. I will pay more attention to him and try to get him involved (don't know how yet, but will try).  
Do not hesitate to ask for his help, talk to him about your feelings, your anxieties, worries, etc. Man sometime is not sensitive as you may think. He may not know how to get involved to help because you are always too busy, and you do not have time to even talk to him.  Effective communication is very important for both you and your husband.

共创奇迹

呵呵，没想到光头老爸这么有型，看来我也有潜力去剃个光头，超前一把。有次看到一个光头外国MM艳羡了老半天，人家那脑型，怎么把五官衬托得那么好看呢，真想啃上一口。今天又有这种冲动，虽然爸爸的脑袋不象MM那样粉嫩，成色差了点，但终归是心爱的爸爸，越看越爱。这也是小癌同志作的不多的有点贡献意义的事情，让老爸以全新形象登台，大获母女芳心。前两天就听妈妈说爸爸为了放疗把头剃了，还啧啧称赞。

期待着明天在电话里调侃一下这位老帅哥 ：）一个月之后就可以摸摸这可爱的光脑袋了 ^_^

[ 本帖最后由 共创奇迹 于 2008-11-22 03:00 编辑 ]

共创奇迹

前两天刚夸过小Ai同志，人家就又上劲了。
昨天爸爸去做了脑部核磁共振(到昨天上午已经做了12天的全脑放疗，用了2400拉德(rad)了=24戈瑞(Gy)),和做之前比较没有任何改善。为什么爸爸身上的小Ai这么坚忍不拔，死缠烂打呢？化疗无明显效果，放疗到现在也没看到任何疗效。按理论来说低分化鳞癌对射线是敏感的啊！！！在爸爸身上别的没学到，把爸爸的不屈不饶的精神倒是发挥到了极致，较上劲了。
不知道有没有可能是放疗的效果还没有显现出来呢，不知道根据大家的经验全脑放疗后效果多久显示出来的？
从下周一开始，爸爸就开始用尼莫斯汀注射液了。下周放疗就结束了，也不知道用得是不是太晚了，timing除了病人和家属自己，‘忙得掉脑袋‘的医生们往往是无暇顾及的。
医生说每个月用一次要用半年，跟我在网上看到的信息好像不太一样。不知道除了无香外还有哪位用过？

[ 本帖最后由 共创奇迹 于 2008-12-19 05:01 编辑 ]

小钟

我们做了一个星期症状就有所改善。为什么你爸爸12天了都没有什么效果呢？