Today NIH was celebrating 20 years since they started Allogenic Stem Cell Transplant. There were transplant survivors that survived for many years now who shared thier stories. It was such a comfort to hear somebody telling exactly what you had to say coz they have already been through it. And when they say, I feel with you and I know how you feel , they literally mean it. Some of them are still struggling with cGvHD issues but at least they have a real life now and they are with thier beloved ones. One survivor said something to the people and caregivers of cancer or transplant patients and it was golden, she said: you know how in movies someone would yell at another saying: why are you standing there, just do something!! Well Im teling you, just stand there and dont do anything!! There are no magic words that would make such a bad situation better..the patients only want to feel you are with them..just sit there and be silent..thats all what they need..i dont think anyone couldve said it better than she did. Another survivor talked about courage, and how everybody tell us patients that we were brave and so. and he said we dont feel that coz we really didnt have any other option. So how can u be brave to go in the only way available. The true courage though was that of researchers who are willing to come with new things to help patients when other doctors wanna be on the safe side all the time. Not very safe though, telling a patient just count your days and make your preparations to leave this world. It was a very touching moment when they brought up the man who had the very first allogenic stem cell transplant 20 years ago. The man doesnt even speak English. He speaks spanish and there was an interpretor translating what he says word by word which is why i got really distracted and couldnt hear his story. They had nice green badges that said: transplant survivor .... years and the survivors would fill how many years and wear it on thier chests. I didnt know what to do so I just crossed the word years and wrote 3 months... Strangely, it did feel cool to me..like I have achieved something. The celebration left me with alot of mixed feelings. I was thinking of how hopeless thier stories were and how miraculously things changed at some point. I still felt sad that some people had and have to go through all that suffering and some of them are having GvHD issues. I felt how long is my journey yet to be where they are now and if I will ever be in thier place on that stage telling a sad story in a funny way. I did alot of crying today, I actually started crying way before I got to the auditorium. It was all too emotional. They also celebrated the caregivers who took care of these patients day by day. On my part I wanna celebrate and thank my cargivers here. If I could tell the entire world about them, I wouldve done it because they even deserve more but my 616 friends here will do for now. Before saying names, I truely believe I was blessed with the best support system any patient could ever have. My family, my friends, and the noble people who never knew me before and yet they were sending me supportive messages and praying for me, all the staff at KHCC, the pathology department at KAUH, and everyone here at NIH. But some of them took care of me day by day and those I need to thank them by name. Mom Ilham Nimer my ultimate caregiver..well shes my mom and theres nothing that she didnt do or wouldnt do for me..so trying to say what she did is an endless process. My best friend in the world Karam Batieha who was there with me since day 1 and made sure I laugh everyday when all my other friends were still in shock and couldnt talk to me. The magical word he had for me, which he doesnt even know it was so, was I really dont know what to say ya sanaa and that was all i needed to hear coz only that makes feel that he is really feeling with me. His new magical word is I still dont know how u deal with all this and this one is just perfect too. My mom by adoption Dua Qtaish she was literally my second mom, she attended chemotherapy sessions with me, talked me into going for a pathology residency, and everyday I was there she made sure I come and go home safely, she made sure I eat well, she brought me food everyday so I wont have to walk and stand for too long, she even applied my creams on my wounds and fissures when I couldnt even raise my head, she did all my paper work, I depended on her for getting me whatever I need coz I couldnt go shopping, she made sure she coordinates frequents visits from my other friends whose scheduales never matched, but somehow everytime she could bring me a punch of them, and when she couldnt, she would come alone. My sister Haya who had to drop two semisters to come with me, had to go through painful procedures to donate her precious cells, and is now my main caregiver who does everything I need, the grocery, the bank, the post office, transportation. She packs my things when I have an admission which is usually an emergency, I would wake her up in the middle of the night or early morning to take me to the hospital. And then she stays with me everyday since morning till evening and gets me fresh food daily. At many points at all times there are alot of people whom without help I couldnt be posting this right now. So this is not to say they werent crucial but the above had to deal with my illness daily and they know more than you could imagine about a patients life. And I just cant thank every and each one of you enough but I hope i tried..
Posted on: Sat, 13 Sep 2014 01:08:06 +0000