I am about to fall asleep here so I don't know if this the best time to really write about such an important subject. But here I go and I will give it my best. I have been a big supporter in the last few years concerning patient advocacy and rights, also the treatment and love that some hospitals neglect to give to hurting patients.
I was a very fortunate person in that I have an amazing staff of Doctors, PA's, Nurse Coordinators, RN's, CCP's, Nurse Practitioners, Social Workers, Psychologists that all work with me. Then there are all those others that seem to do the little but very important things like make appointments and bill insurance, take phone calls and all this other stuff that happens behind the scenes (Yeah, I'm talking about you: Tina Marie, Sandra, Michelle, Paula and all others I didn't mention). I Love you all to death! It takes a lot to pull off a well organized place such as Moores Cancer Center and Thornton Hospital. I think they are doing quite a good job.
From my experience being around so many sick individuals with some type of cancer, some of them life threatening. They either say, do whatever you want to me " I DON'T CARE! Put whatever in me I am going to die anyway" this happens when one just gives up on themselves and don't want to even START the fight for recovery.There comes a point in the beginning that they were fighting, but for some reason they can't do it anymore, and give up. Then there are those that had been doing pretty well and then all of a sudden they hit a bump in the road and it puts them out for a little longer and they get so tired of fighting that they begin to lose their will to live. That is a sad moment when that happens, it is like the life leaves their eyes and you know they are gone, they quit fighting. I can relate because I had a three month period where that happened to me, but lucky for me I am strong willed and I just keep fighting, for some reason I knew it wasn't my time to die. I have seen more heartache in these past few years that no person should have to go through after building relationships with these wonderful people. To all that have lost the battle to Cancer just know that cancer is a sick SOB and that you are all rock-stars for fighting as long as you do. I know our inner strength has a lot to do with our health, but I do know it largely is if your body can handle and accept all the medication and torture it is put through. To all my 3West Cancer Posee Patients that have passed away just know that I miss you so much and everyone of you impacted my walk in this journey in some unique and amazing ways. THANKS!!!
I just want to encourage everyone, even if you don't have a cancer diagnosis to know your rights during procedures and medical decisions. You never know if one day you wake up and have a life threatening disease like I did. When I was getting treatment I asked TONS of questions and had them explain what things meant and I am faithful about keeping myself knowledgeable about what is going on in my body. And I do have a great doctor who is pretty on top of things and listens to me when I need to be heard. We have a right to know everything that is going on; without question. Also if you don't partiality like a certain nurse or other person that is taking care of you, then tell the Charge Nurse or their superior and tell them the truth. They wont be offended I think. There were a few nurses or doctors that I didn't care for, I had to request a new one a couple times during my times in the Hospital. They need to attend to your needs and not the other way around. You will defiantly know who are the ones that you are able to connect with and make your time in the hospital more enjoyable.
I was just reflecting on a hospital that my aunt just got discharged from this week in Temecula.. She had to get a hip replacement. I went and visited her while she was in the hospital that she was at, and it was horrible. They didn't even look or act like they really wanted to be there. She would use her call button for something and it would take then like a least an hour to get there. I finally just wanted to go and give them a piece of my mind. I have become a huge patient advocate in wanting patients to speak up because technically the nurses and Doctors are working for us the patient, and you are paying the insurance, they need to be way more attentive. That was a very frustrating moment because I know the pain and when you hit that call light for pain meds of whatever else, it is IMPORTANT!!! Other wise why would I be paging you guys so much. My Aunt it pretty layed- back and doesn't like any confrontation and says, '' oh know they know what they are doing", no forget that, they need to be more hospitable and organized. You Must ask lots of questions about every little thing that is going into your human body. If you are not comfortable with a procedure or medication or etc. being done to you, speak up and ask if there was a replacement or another route they could do. Now most the time especially now they have a certain way of doing things and its harder to find alternate methods for severe cases.
I just have to now talk about the most amazingly wonderful person in the entire World. Her name is Ursula and she is my doctors nurse and works with us BMT patients. She is always smiling and working harder than most people ever do. How she keeps track of all of us patients is incomprehensible to me. Also when I gave her a request for a scrip refill, paper work and translating the letter I wrote to my Donor. And it doesn't take weeks to get stuff back. She is Amazing!!!!! And I can't say that enough. I am planning to do something special for her for everything else she does. (I think I know who superwoman is) :)
So in closing with this very important issue, I am greatly blessed to have such a wonderful group of medical professionals. They have become like my second family because they treat me well and like a family, That is how health care in this country is supposed to be. I just want to encourage people to take care of their heath now. Although there was nothing to do or not do something to get diagnosed with Leukemia, it just happened from "BAD LUCK", so they say. So whether you end up getting a big cancer diagnosis like me and many other unsuspecting people. Whether it is treatable of not and whether you want to deal with it is your choice. Personally I knew there was substantial risk that the Chemo and Radiation does to a person, but there I did it anyway. Then the transplant process was a little exciting and scary at the same time. I mean if my donors cells did not like my body and rejected it I probably wouldn't even be here. I just encourage all you Caner patients. We are going to find a cure someday (CURES ROCK)!!!!! Then we will kick Caners Ass.
So here are some tips that have helped me immensely. I don't know about other Cancer places but at Morres they offer a huge range of awesome material in the patient resource center, Books you can borrow, books you can keep, Internet access, homemade items, wigs and literature on many different illnesses, but mostly dealing with Caner related things, Everything is free and has given me so much knowledge, that I just hunger and crave for more. I think that is why I am going to try to get my RN so I can be one of those compassionate nurses and share comfort and tears, and give them some ideas on life after transplant, because life is so different when you get back on the outside again, The doctors always try to give you the best case scenario, but most likely it will not happen. So enjoy things while you can and live it up BABY!!!!
FIGHT FOR YOUR RIGHTS!!!
1. SWAB+DNA= SAVE A LIFE : www.marrow.org
2. LIVESTRONG : www.livestrong.org www.livesrtong.com
3. American Red Cross : www.redcross.org
