We were interviewed by CN8 on Friday. That is the cable news station. October is breast cancer awareness month. They did a piece about the cancer support organization hat has been helping us, The Breathing Room. They have been really good to us and have provided us with tickets to great adventure and movies. The aquarium and Franklin Institute as well. So CN8 asked us to discuss our experience with them. I think it airs on Monday night at 9pm, 11pm, and Tuesday at 9am. We do not have cable so let us know how it turns out.
I am so glad that Kelly wrote all those powerful thoughts down. It is very challenging to let people in during a time like this. I too have days where I feel like hiding. Away from the world that knows I am “sick”. I want to pretend that I am fine. I want to keep things to myself. But the desire to help others just wins out. You may think well how does this help others? Honestly, from the comments I think it does. I think there are so many people out there who have loved ones with cancer, I think the blog just gives a bit of insight regarding the struggle. I also have a great hope that maybe someone will have read the symptoms and know before I did that there could be a problem. So I do not mind my public cancer as much as Kelly…but it is sometimes difficult for me as well.
The thing that is really hard is the great number of me who touch me and see me naked on a regular basis. When you are healthy you are only naked in front of the people you chose to be. Not me. I am expected to take off my cloths, don a gown, and let whatever specialist, med student, technician, or janitor touch my breasts. It is part of my “care”. Sometimes it makes me cry. I did not sign up for this. I do not want to be naked in front of all these people. No less than 15 different people have touched my breasts in the last 2 weeks. And none of them are married to me or paid me for the privilege. I WANT MY BODY BACK!!! I want my privacy back. I want to be able to say “No.”
It is the theme of my life right now. I want my hair back. I want my breasts back. I want the my old body back or at least the way that it felt to walk in my skin. I want my old life back. The frustration makes me want to scream. I am about to get an operation that will last 5 hours. Everyone in the room will see me naked. Every nurse will inspect my wounds and touch me. The home care nurses as well. Then the follow up appointments. The radiation oncologists. And the list goes on. And without any end in sight. No one will ask for permission. No one will chat me up first. No one will tell me they still respect me when its over.
I feel like I used to hug people more before all of this began. Right now I am so touched out that I keep a little distance. It is a sad truth. I do not love any less. I just want to keep a small piece of myself private.
Daily I experience a new challenge, lesson, or emotion about my new diagnosis. They are never what I would have predicted. This particular makes me feel extremely powerless. Maybe more so than other things. I am not powerless over my chemo symptoms (acupuncture and prayer) I have not been powerless over my treatment. But being vulnerable in front of these strangers….totally hopelessly powerless. I wish that I was an exhibitionist and that this was no big deal. But truthfully, it kills me.
So my public cancer is not just about the blog or an interview. My public cancer occurs behind pulled curtains.
Andrea,
It was so good to spend time with you, Bailey, and Clay today. Your cancer has been with us on so many occassions, but today all it got to be was some fatigue. I’m grateful that we could have that little reprieve.
I don’t think I can tell you enough how much you, Kelly, and the kids mean to me. Or how much it pains me to know I can do nothing but love you. I guess that’s all we can ever do for one another. I suppose I’m grateful for that too then.
Looking forward to spending my birthday with you!
Love,
Rob
You are touching more people than you know through your honest and giving spirit. After I read your blog I am so grateful for my health and and am learning to appreciate every moment of my life. If I could trade with you I would gladly give you some of my healthy days and take away some of your pain.
I am leaving for church now and will be praying for spirit and recovery.
Wow! I found your blog through WhyMommy’s (toddlerplanet) blog. Why did I not find you before today? Amazing.
We have a LOT in common. IBC just happens to be one of the things. Where are you? I’d really like to meet you………..
testing. testing. he he. ok. so i left a message once before and it didn’t post. do you moderate?
anyway, i was asking where you’ve been all my life, but upon more careful reading i see that you’re newly diagnosed. that explains it.
so i came across your blog through WhyMommy’s (toddlerplanet) blog. i am excited to get to know enough about you in just the few minutes browsing to know that we have a lot in common!
where do you live? it would be a privilege to meet you.
Everybody in a doctor’s office or hospital room with you you–docs, nurses, technicians, med students, etc.–has a responsibility to introduce themselves to you when they walk in your room, and you have the option of NOT being part of their education. I have asked groups of med students to leave my hospital room in the past–I’m not always in the mood to be Exhibit A. Anyway, it’s instructive for them to meet an empowered patient.
For what it’s worth, those are your rights under the Patient’s Bill of Rights. I’m posting Penn’s version here so you can always find them.
Katie (friend of Rob)
Patient Bill of Rights & Responsibilities
The health care facilities within the University of Pennsylvania Health System (UPHS) are committed to delivering quality medical care to you, our patient, and to making your stay as pleasant as possible. The following “Statement of Patient’s Rights,†endorsed by the administration and staff of our facilities, applies to all patients. In the event that you are unable to exercise these rights on your own behalf, then these rights are applicable to your designated/legal representative. As it is our goal to provide medical care that is effective and considerate within our capacity, mission, and philosophy, applicable law and regulation, we submit these to you as a statement of our policy.
STATEMENT OF PATIENT’S RIGHTS
You have the right to respectful care given by competent personnel which reflects consideration of your personal value and belief systems and which optimizes your comfort and dignity.
You have the right to know what hospital policies, rules, and regulations apply to your conduct as a patient.
You have the right to expect emergency procedures to be implemented without unnecessary delay.
You have the right to good quality care and high professional standards that are continually maintained and reviewed.
You have the right to expect good management techniques to be implemented within this health care facility considering effective use of your time and to avoid your personal discomfort.
You have the right to have a family member or representative of your choice and your physician notified promptly of your admission to the hospital.
You have the right to medical and nursing services without discrimination based upon race, color, religion, gender, sexual preference, handicap, national origin, or source of payment.
You have the right to appropriate assessment and management of pain. You have the right, in collaboration with your physician, to make decisions involving your health care. This right applies to the family and/or guardian of neonates, children, and adolescents.
While this health care facility recognizes your right to participate in your care and treatment to the fullest extent possible, there are circumstances under which you may be unable to do so. In these situations (e.g., if you have been adjudicated incompetent in accordance with law, are found by your physician to be medically incapable of understanding the proposed treatment or procedure, are unable to communicate your wishes regarding treatment, or are an unemancipated minor) your rights are to be exercised, to the extent permitted by law, by your designated representative or other legally designated person.
You have the right to make decisions regarding the withholding of resuscitative services or the foregoing of or the withdrawal of life-sustaining treatment within the limits of the law and the policies of this institution.
You have the right, upon request, to be given the name of your attending physician, the names of all other physicians or practitioners directly participating in your care, and the names and professional status of other health care personnel, including medical students, residents or other trainees, having direct contact with you.
You have the right to every consideration of privacy concerning your medical care program. Case discussion, consultation, examination, and treatment are considered confidential and should be conducted discreetly giving reasonable visual and auditory privacy when possible. This includes the right, if requested, to have someone present while physical examinations, treatments, or procedures are being performed, as long as they do not interfere with diagnostic procedures or treatments. This also includes the right to request a room transfer if another patient or a visitor in the room is unreasonably disturbing you and if another room equally suitable for your care needs is available.
You have the right to receive care in a safe setting, and be free from all forms of abuse and harassment. You have the right to have all information, including records, pertaining to your medical care treated as confidential except as otherwise provided by law or third-party contractual arrangements.
You have the right to be free from restraint and seclusion not medically necessary or used as a means of coercion, discipline, convenience or retaliation by staff. You have the right to have your medical record read only by individuals directly involved in your care, by individuals monitoring the quality of your care, or by individuals authorized by law or regulation. You or your designated/legal representative, upon request, will have access to all information contained in your medical records, unless access is specifically restricted by the attending physician for medical reasons.
You have the right to be communicated with in a manner that is clear, concise and understandable. If you do not speak English, you should have access, where possible, to an interpreter.
You have the right to full information in layman’s terms, concerning diagnosis, treatment, and prognosis, including information about alternative treatments and possible complications. When it is not medically advisable that such information be given to you, the information shall be given on your behalf to your designated/legal representative. Except for emergencies, the physician must obtain the necessary informed consent prior to the start of any procedure or treatment, or both.
You have the right to access protective services. You have the right to not be involved in any experimental, research, donor program, or educational activities unless you have, or your designated/legal representative has, given informed consent prior to the actual participation in such a program. You, or your designated/legal representative may, at any time, refuse to continue in any such program to which informed consent has previously been given.
You have the right to accept medical care or to refuse any drugs, treatment, or procedure offered by the institution, to the extent permitted by law, and a physician shall inform you of the medical consequences of such refusal.
You have the right to participate in the consideration of ethical issues surrounding your care, within the framework established by this organization to consider such issues.
You have the right to formulate an “advance directive,†or to appoint a surrogate to make health care decisions on your behalf. These decisions will be honored by this facility and its health care professionals within the limits of the law and this organization’s mission, values and philosophy. If applicable, you are responsible for providing a copy of your “advance directive†to the facility or caregiver.
You are not required to have or complete an “advance directive†in order to receive care and treatment in this facility.
You have the right to assistance in obtaining consultation with another physician at your request and expense. When this facility cannot meet the request or need for care because of a conflict with our mission or philosophy or incapacity to meet your needs or request, you may be transferred to another facility when medically permissible. Such a transfer should be made only after you or your designated/legal representative have received complete information and explanation concerning the need for, and alternatives to, such a transfer. The transfer must be acceptable to the other institution.
You have the right to examine and receive a detailed explanation of your bill.
You have the right to full information and counseling on the availability of known financial resources for your health care.
You have the right to expect that the health care facility will provide a mechanism whereby you are informed upon discharge of continuing health care requirements following discharge and the means for meeting them.
You cannot be denied the right of access to an individual or agency who is authorized to act on your behalf to assert or protect the rights set out in this section.
Information regarding your rights as a patient should be provided to you during the admissions process or at the earliest possible appropriate moment during the course of your hospitalization.
You have the right, without recrimination, to voice complaints regarding your care, to have those complaints reviewed, and, when possible, resolved.
If you or a family member thinks that a complaint or grievance remains unresolved, through the hospital process (see further information below) you also have the right to contact the Division of Acute and Ambulatory Care, PA Department of Health, P.O. Box 90, Health and Welfare Building, Harrisburg, PA 17180-0090, (800) 254-5164 or Department of Health Services Center for Medicare and Medicaid Services (CMS) call 1-800-MEDICARE.
STATEMENT OF PATIENT’S RESPONSIBILITIES
As a patient, you should act in accord with UPHS policies, rules, and regulations and assume responsibility for the following:
This health care facility expects that you or your designated/legal representative will provide accurate and complete information about present complaints, past illnesses, hospitalizations, medications, “advance directives,†and other matters relating to your health history or care in order for you to receive effective medical treatment.
In addition, you are responsible for reporting whether you clearly comprehend a contemplated course of action and what is expected of you.
It is expected that you will cooperate with all hospital personnel and ask questions if directions and/or procedures are not clearly understood.
You are expected to be considerate of other patients and health care personnel, to assist in the control of noise and visitors in your room, and to observe the smoking policy of this institution. You are also expected to be respectful of the property of other persons and the property of the health system.
In order to facilitate your care and the efforts of the health care personnel, you are expected to help the physicians, nurses, and allied medical personnel in their efforts to care for you by following their instructions and medical orders.
Duly authorized members of your family or designated/legal representative are expected to be available to UPHS personnel for review of your treatment in the event you are unable to properly communicate with your health caregivers.
It is understood that you assume the financial responsibility of paying for all services rendered either through third-party payers (your insurance company) or being personally responsible for payment for any services which are not covered by your insurance policies.
It is expected that you will not take drugs which have not been prescribed by your attending physician and administered by appropriate staff and that you will not complicate or endanger the healing process by consuming alcoholic beverages or toxic substances during your hospital stay and or visit.
Garry L. Scheib
Chief Operating Officer,
University of Pennsylvania Health Systen
Executive Director,
Hospital of the University of Pennsylvania
Michele M. Volpe
Executive Director,
Penn Presbyterian Medical Center
Elizabeth Johnston
Executive Director,
Clinical Practices of the University of Pennsylvania
Kathleen Kinslow
Executive Director,
Pennsylvania Hospital
For Further Information
If you have questions or problems concerning your care, please speak with your physician, nurse or other hospital or ambulatory practice representative before you leave the clinical site.
You may also direct your concerns regarding your healthcare or questions about the Patient Bill of Rights and Responsibilities to the appropriate Patient & Guest Relations Office:
Hospital of the University of Pennsylvania
3400 Spruce Street
1 Silverstein
Philadelphia, Pa. 19104
215-662-7378
Penn Presbyterian Medical Center
286 Wright Saunders
39th & Market Streets
Philadelphia, Pa. 19104
215-662-9100
Pennsylvania Hospital
800 Spruce Street
1 Preston
Philadelphia, Pa. 19106
215-829-8777
The following organizations may be contacted if concerns about your care or treatment have not been resolved to your satisfaction:
The Division of Acute and Ambulatory Care, Pennsylvania Department of Health (DOH), at P.O. Box 90, Harrisburg, PA 17120 or by phone at 1-800-254-5164.
Centers for Medicare and Medicaid Services (CMS) at 1-800-MEDICARE.
The Division of Accreditation Operations, Office of Quality Monitoring, Joint Commission on Accreditation of Healthcare Organizations (JCAHO), One Renaissance Boulevard, Oakbrook Terrace, IL 60181, fax (630) 792-5636.
Need an appointment? Request one online 24 hours/day, 7 days/week or call 1-800-789-PENN (7366) to speak to a referral counselor.