For all you patient people checking in to see the blog, my apologies. I am still a nomad at work and can't seem to get my computer working either at home or work! Our IT department is keeping busy trying to trouble shoot for me. this made me think about how I do much the same for my patients. I realize all the hoops that you have to contend with and all the different doctors and appointments. If you show up with a sore throat not related to your treatment you will have to go see your family doctor and if you have an ingrown toenail your oncologist will not take care of that. It is as frustrating to you as it is to us and now days, in some hospitals if you are admitted, you will see a hospitalist and that is a new doctor that just follows you while you are in the hospital. Is it any wonder why patients are confused and wondering who they contact first or tell what to whom. I try to ease the pathway when I can but even as a nurse sometimes the line blurs and as a patient, I try not to overstep my bounds. I encourage you all to know your team and their first names. Write down who you talked to an when and what about and don't be afraid to call again. I currently have been waiting since last Friday for my doctor's office to call back and fortunately it isn't a huge problem but seeing that it is Wednesday, I will make another attempt. For those of us trying to schedule for patients, we need to be aware that every appointment may mean another co-pay. Few of us can afford several in a week at this time. So as my frustration mounts in regards to keeping in touch with you and also getting my work done, I continue to work to making inroads for you during and after treatment. It will be a good day?
0 Comments
When first diagnosed with breast cancer, one of the last6 things you think about is reconstruction. Your main focus is getting rid of the cancer and what all it entails. you are run from one appointment to another and sometimes feel like you are jumping through everyone's hoops but your own. Your life is no longer your own and most people know you when you are undressed rather than when you are dressed. Some of you are also asked to make the decision of immediate reconstruction or not and what type of reconstruction. The diagnosis itself was enough to contend with and then you add this whole other loop to it all. I can't begin to tell you how many times I have heard patients ask the doctor," what would you do if it was your wife?" In fact, I must confess, I too asked the same question.
There is so very much information you must assimilate in a short period of time and become an expert in your own care. First and foremost, this is your body and your decision. It does help to talk to others that have been there but take one step at a time and get accurate information adn then talk to others including your health team. I often tell patients to make your list of questions before you come for your next visit or before your first visit and keep them in a notebook that you can refer to. Maintain hope and rely on friends. There is nothing to say that you have to be a superwoman. First you have to decide if you want reconstruction now or later and then look at the pro's and con's. Are you ready to deal with a different body image, can you physically and mentally handle multiple surgeries as needed for reconstruction and scar tissue , will it bother you or the absence of feeling as your reconstruction will restore the shape but not necessarily the feeling? Will you take the time you need to recover as a mastectomy will take less time than a mastectomy with reconstruction to recover? As you review all of these ramifications, you must also look at your family responsibilities, and workplace concerns as well as timing and costs as well as insurance coverage. Reconstruction does not change much for a lumpectomy patient but there are options with that as well. Truly think and ask clarification of what the outcomes will be and what your expectations are and if they align together are yet more for consideration. This discussion and all others related to reconstruction should start early when talking to your breast surgeon. Do know that you can have immediate reconstruction or in fact a delayed bbreast reconstruction at a later date of your choosing. Make SOME WEBSITES THAT MAY HELP: The American Society of Plastic Surgeons www.plasticsurgery.org www.breastcancer.org Facing Our Risk of Cancer Empowered www.facingourrisk.org Your Breast Options www.yourbreastoptions.com This years annual meeting of ASCO met in Chicago and the emphasis was on "advancing Global Health Equity." When talking about global that means universal, there is one world and we are all a part of it and we must look at the global community. There have been advances in some parts of the world but not uniformally everywhere. It is time we take borders down and unite forces to get the answers to reach all. We learned much in the past from the AIDS care and because of successful interventions we are seeing vastly decreased rates of AIDS in even low resource countries. Whether we are looking at AIDS,HIV,TB, or other illnesses, it is time we pull together and if we can do it with other diseases, let us affect a change in cancer. "Low and middle-income countries bear nearly 80 percent of the global burden of disease for cancer, yet account for just five percent of global spending on cancer." (Sarah Diguilio-ONCOLOGY TIMES)
The challenge of the future is for all of use to work together and have committed oncologists and medical teams pull together to accomplish a change in the fut I am happy to say that we have a new store to help our needs with bathing suits, scarves, wigs, exercise clothes, gift baskets, chocolate, teas, and more.I am often asked where to go to get fitted for a bra or where to get a bathing suit and forms for those of us that have had breast cancer. Now we have another option in Meadville and I will say my experience was delightful Take a trip out to ME AGAIN BOUTIQUE at Cutter's Condos on the Conneaut Lake Road. The phone number is814-547-1240. Now I don't normally endorse any business but I suggest you make a trip and make your own decisions.. Makes it a great day! S
For those of you being so very patient, I do believe that I will have a honest to goodness real blog on tomorrow. Still working out kinks of computer/office/phone services but I will no matter what bring some news of value tomorrow. Keep smiling and remember diversity is your chance to shine... I am smiling
|
AuthorMy name is Sue Kilburn and I am a clinical nurse breast cancer educator at the Yolanda G. Barco Oncology Institute in Meadville, Pennsylvania. Archives
March 2015
Categories |