It’s OK to Advocate for Yourself

Throughout the last 5+ years, I have learned a lot about advocating for the ovarian cancer community: I have been to Capitol Hill several times to ask for research for dollars for better treatments and an early detection test, I have participated in the American Association for Cancer Research Survivor Scientist Program, I have been a consumer reviewer for potential innovative research, and I am a presenter with Survivors Teaching Students® where we speak with 3rd-year medical students, physicians’ assistant students, and nursing students about our stories in the hopes that they will refer patients who present with symptoms to a gynecologic oncologist so that if ovarian cancer is present, it will be diagnosed at an earlier stage.

In these past few years, I have also learned to advocate for myself especially when it comes to healthcare.  For example:

  • During my frontline chemotherapy treatments, the infusion center where I was initially sent was being remodeled.  The temporary setup was not ideal:  patients were packed in like sardines, there was absolutely no privacy in conversations because the arms of the most uncomfortable chairs were touching the next patient’s chair, and my first treatment included the nurse seating me and then going to lunch for an hour so no one checked on me or explained what was happening. When I finally received chemotherapy, I felt like I was not a person at all  – I was merely “a port access” and no one looked me in the eyes to tell me what was happening or how long it would last.  I was already terrified to receive chemotherapy and by the time I left, I was so stressed about this experience that when I saw my oncologist the following week, I told her about my experience and I asked if there was another location for chemotherapy where I would be treated a person first and patient second.  She was wonderfully supportive and found me another place to receive chemotherapy for the duration of my treatments.
    • The “takeaway” is:  Express your concerns and ask for what you want/need. Do not suffer in silence.
  • I am a supporter of clinical trials; however, they are often an administrative nightmare for the patient who is already stressed but then must take on the role of communicating between the various parties involved.  If your oncologist is also facilitating the clinical trial, things tend to run much smoother.  I have experienced the smoother option as well as the administrative nightmare but patients still need to advocate for themselves if they really want in a trial.  Be the squeaky wheel because time is often a stringent guideline to get in to one.  At the same time, if the trial is not meeting the patient’s needs, it is o.k. to voluntarily leave a trial.  I did this a few years ago when I was in a maintenance trial in Boston. There was ZERO communication within that facility, my calendar for trial tests was wrong (they wanted to do tests that didn’t need to be done because it was on the calendar in error) and I pointed it out every week, then every month, and no one took responsibility.  I had to physically carry information from one desk to another in the same office.  I also did not receive the travel reimbursement that the clinical trial covered although I asked about it every time I went. After 5 months, I told the Boston doctor that I was going back home for follow-up care. I told her that this was a “world-class” hospital but that does not mean that treatment and care is any less stressful if the patient has to do other people’s work.   She agreed that there were issues – because I had been bringing them up at every visit – but did not seem concerned enough to try and fix it.
    • The “takeaway” is: Just because it’s a world-class hospital and has a great reputation does not mean that it will do everything it can to ease your stress as a cancer patient.  Tell them what you want/need and if they won’t fix it, it’s o.k. to go elsewhere.  (I did eventually receive my travel reimbursements but it took a very long time and I had to keep asking every week.)
  • If you have scans or tests done, do not leave it up to the doctor’s office to call you.  I know too many people who “fell through the cracks” and did not receive the call-back for mammograms, etc.  Call the office.
    • The “takeaway” is:  Be the squeaky wheel.  It’s your health that is at stake.  Keep calling until you get answers.
  • Second opinions are totally o.k. to seek out.  I have a terrific gynecologic oncologist in my home state who facilitates clinical trials.  However, there was one that I really wanted to get into (I’ve been in 4 different trials thus far) that was in Boston.  I went to Boston last fall and it was determined that the trial may not be my best option so we pursued traditional chemotherapy in the hopes of shrinking the rogue tumor and then perhaps I could get into a different trial.  The tumor stopped responding to chemotherapy and the Boston physicians recommended surgery with a particular surgeon.  I was not in favor of this ( I had already had two other tumor debulking surgeries at this point and really did not want another surgery) but I had a consultation with that surgeon who was terrific.  However, he was a GI surgeon and not a gynecologic oncologist. I am very knowledgeable about how my cancer grows and oftentimes there are small tumors in my pelvic region that do not show up on scans.   Therefore, I wanted a gynecologic oncologist in the OR just in case he/she determined that the scheduled surgical procedure may not be the best option once he/she looked around after the initial cut.  My Boston physician would not be there and the GI surgeon did not think it was necessary.  My “gut” feeling was that this was not the way to go.  Again, even though Boston has world-class hospitals with world-class physicians, it was not the best option for me.  I went back home and met with my gynecologic oncologist as well as a surgical oncologist that she recommended.  I felt so much better about their approach and scheduled the surgery with both of them in the OR with the gynecologic oncologist “driving” the surgery.   In the interest of full disclosure, the surgery ended up being the same that Boston would have done. However, I would not have that piece of mind of a gynecologic oncologist looking around at the beginning of the surgery to see if there were any more tumors lurking about or to change plans if need be.
    • The “takeaway” is:  Be knowledgeable about your illness.  Listen to your gut. It’s o.k. to get second opinions. Do not worry about hurting anyone’s feelings because it’s YOUR body and YOUR life.

Whether it’s cancer or another chronic illness, be knowledgeable and ask for what you need.  If you are not getting what you need or are not getting answers from your current physician, find another one who believes in patient-centered care.  That is where you will find the best care for YOU.

Self Advocacy PostIt

Nuggets of wisdom during the last few months

The other day, I received the great news from my oncologist that I am currently in remission.  I choose to think that I am cured.  Although the battle is not over – my type of cancer has a high recurrence rate – I will celebrate each day that I am cancer-free.  I have learned and observed a lot during the last few months.  Here are a few nuggets of wisdom:

*     Caregivers are angels who have earned their wings.   If you have ever been ill or incapacitated in any way for any length of time, I hope you were lucky enough to have a caregiver – or several – by your side.  Caregivers are selfless people who give their time and energy to an ill loved one. They become cooks, cleaners, chauffeurs, pack mules, and most importantly, they are advocates who ensure that the patient gets the best care possible.

*    Speak up.  Early on in my treatment, I was less-than-satisfied with a particular situation.  I mentioned it to one of the nurses in my doctor’s office.  I was very fortunate in that she spoke with another nurse who called me for the all the details.  She listened to my concerns and mentioned it to my doctor.  The next time I saw my doctor, my doctor asked me for details so I repeated them to her.  She listened with sincere concern for my well-being and thanks to her, changes were made and the situation was resolved quickly.  I am so glad that I spoke up and I am glad that I have a doctor who listened to me.

*   Get organized and stay that way.  I previously posted some tips about being organized.  It is so important to keep track of appointments, medications, notes, legal information, etc.  It really makes treatment much easier when you’re not scrambling to gather important items.  Being organized alleviates a lot of stress and allows you to concentrate on you getting better.

*   Nothing is “big” anymore.  Once a person has been diagnosed with cancer, nothing else seems as big as it used to.  Things that seemed important or things that seemed like mountains to climb are no longer that important.  When it comes down to it, nothing is as important as fighting to live.  I don’t care what people say or think about me, I don’t care who stares at my hairless head, I don’t care about anyone else’s “drama,” and I don’t have any problems pulling out the “no” card when someone asks for me to volunteer or help with a project.  What matters to me is having the strength to battle cancer and if I devoted any energy to deal with negative stuff, I wouldn’t have the full amount of energy needed to combat cancer.

*   Attitude is more than half the battle.  Chemo helps but if you have a bad attitude, you might be in a losing battle before you even start.

*   Fighting cancer is a team effort.   The doctors, nurses, and chemo can do only so much.  If anyone thinks that it is all up to the medical people to “fix it” or “get rid of the cancer,” that person is sadly mistaken about what it takes to battle such a horrendous disease.  You need to show up and be willing to follow the schedule including not missing appointments, taking the prescribed medications, eating healthily, getting some gentle exercise, and staying positive.   If you don’t do your part, the medical community cannot do its part either.

*  I’ve learned who truly cares about me and who doesn’t.  If truth be told, I’ve always known this but it’s a real study in sociology to see how people around me reacted when they learned that I had cancer.  Those who care about me reached out to me when they first heard “the news” and never stopped checking on me or my family.  There were some who were friendly towards me before my diagnosis and I haven’t seen or heard from them since. I am o.k. with that.  I hold no ill will towards those people.  In fact, I almost feel sorry for them because it’s painfully obvious that they have some issues that they are not dealing with but if cancer or a life-threatening illness ever affects them or one of their loved ones, “reality” is going to be a tough pill to swallow and they cannot hide from it forever.

*   Surround yourself with positive people including other cancer survivors.  I have had the benefit of seeing several family members battle some type of cancer and come through as survivors.   I would never wish the disease on anyone but I have watched them battle and win.  I also have a couple of friends and co-workers who have beaten cancer.  These people have been very supportive of me and offered me their insights, tips, and advice on dealing with cancer and all that goes with it including side effects of chemotherapy.   Cancer is real and it’s important to deal with it from the beginning with a fighting spirit and face it head-on.   If you have negative people in your life, sever those ties or at least be vocal about keeping them away.  They will only drag you down.

*   Be compassionate.  I’ve been through “the battle” and have come out on the other side as a survivor.  Recognize that others may be going through a similar battle.  Look them in the eyes, say hello, and smile.  Don’t avoid them or pretend like they aren’t there just because they may not have hair or have a round, puffy face thanks to the steroids and chemo. Please treat everyone with courtesy and respect.

*  Be good to yourself.  Understand that this is a process.  Take the time to eat healthily, get lots of sleep, slow down, and let the laundry pile up if you need to take a nap.  If you want to take a 2-hour bath, do it and don’t feel guilty about it.  Nothing is as important as taking care of YOU.

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