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Reality of what maybe: Ovarian Cancer as a teen The pain woke me up. What's going on I thought. What's wrong? The tears began to run down my face when I realized that the pain wasn't going away. "Ahhhhhhh!" I scream and scream. "Shut up. Stop faking," my brother said. There was no position I could get in that would take the edge off. The first day was so unbearable. Nobody really knew what was wrong with me. My mom kept telling me, when I called her at work, that I was just constipated and that I needed to stop calling her. I'm alone and I'm in pain. I called the hospital and they thought that I was constipated too. I asked what I could do to help and they said that there was nothing really they could do because I didn't have my parents' consent. That day went by and then another. For some reason I had a doctor's appointment that day and hope filled me. So I'm at the doctor's office and they call me and I go into the room. My mom's mad that she has to come to the doctor's office on her free time. The nurse comes in and I tell her my symptoms and immediately, she thinks that I have a urinary tract infection. I pee in the cup, wait and find out that that wasn't it. (I wanted that to know what was wrong with me. I wanted to get everything done and over with.) So the doctor comes in and I tell him my symptoms and he thinks that I have kidney stones. So he gets on the phone and askses what my insurance will cover. No catscan, but an ultrasound. The next day at 4 p.m., I go over to the hospital and have the ultrasound done. (Talk about uncomfortable. Your bladder's full and they keep pushing on all your areas of pain. She looked at my kidneys on both sides and then my uterus and my ovaries. (Even though she could see this 14 centimeter cyst in me she didn't care to tell me even though I was right there.) So I have to wait until the following tuesday to find out if I there's something wrong with me. I go in and the doctor tells me that I have a 14 centimeter cyst on my left ovary. The next day I have to go in for a catscan. (The only reason I got to get a catscan is because I was in a life threatening situation. Once again the doctor knew something that they decided not to tell me. So the next day comes around and I go in and get the catscan done along with some blood work. By the way, you should know that many people have to suffer because of the cutbacks on things. Look at me as an example.) I have to go back to school with knowing something's wrong with me, knowing that this thing inside of me has to be surgically removed. Knowing that if it pops before surgery I could die. The next day I had to go to a specalist in Spokane to schedule a surgery day.Along comes Thursday, November 4, 2004. It was a day surgery. I go in and get the bloodwork done, pee in the cup and go sit back down. Here I am this 14-yr-old girl that has ovarian cancer because of a cyst that the doctor missed on the pap smear three months before. Yes I am one of the lucky ones that gets the doctor who thinks that an abnormality on my pap smear is a yeast infection. It should have been obvious that that wasn't it when i didn't have an itch in my crotch. Now this cyst had been growing in me for more than a year. There was no reason for the doctor to assume it was anything else. Well anyway, I go down into the Iv room and they hook me up and start to give me the stuff they give to people before surgery........ I come out with an anxiety attack. They think that it because of my own fault when really I am allergic to the anaesthetic. My mom's telling me to shut up and I'm telling her to leave me alone. She says that I need to get ready for home. It's obvious that I need to stay in the hospital and the doctors try to tell my parents and they think it's because of how they were acting. (I have no idea why my parents act the way they do. Maybe a bad childhood, who knows?) Eventually the nurse get my parents away from me so that I can start to relax and get some oxygen. After about an hour the anxiety attack stopped and I was able to threw up and calm down. Everything's pretty much went smoothly from there. My belly button and my pubic region where they cut hurt as well as the arm that my IV was in, but I was comfortable and I was warm.Now a week later I'm still in pain both my arm and where they made the incisions. I now only have one ovary and one fallopian tube. Lately my emotion state hasn't been good, but I'm a strong-willed person.
Canadians have expressed their desire to receive access to care closer to home but at what expense? If the ovarian cancer patient fully understood that traveling to see a specialist could impact on her survival, there would be no decision. This should be obvious from recent examples of patients willing to travel outside of the country for treatment. In remote communities, this may be understandable. However, are we at the point in our Health Care system where any care is deemed better than no care? Women are sent home from hospital to die without the proper support mechanisms. Ovarian cancer women suffer excruciating pain because health care workers are not available. Women experience nausea because they have no private health care plan and cannot afford the costly anti-nausea medications. There is financial distress but families are too proud to talk about it; preferring to suffer in silence. I could tell you of a 'middle-class' family who could not afford the bus fare to send their children to the hospital to visit their dying Mom. Have we considered single Moms and elderly women who live on their own? Cancer pain at the close of life should not be a medical issue in 2002, but it exists because of an ineffective system that does not recognize the wider problem. We have choices and we need to make them right. 3) Quality of Care Quality of care not only surrounds the previously alluded to 'specialist' care but also includes diagnosis, treatment, counseling and follow-up care for a cancer which never goes away. Palliative care is a reality in ovarian cancer. We have leapt into a home care system with little resources and poor planning. We need to pay more attention to these realities. 4) Respect of Patient - Education - Awareness - Patients' Bill of Rights/Dispute Mechanism It is time for a new patient bill of rights, but not in the prevailing or traditional manner. I have had personal experience with a "Patient Advocate" and realized later that in fact this 'Patient Advocate' was more of a Hospital or Doctor Advocate. A Patients' Bill of Rights means one thing to an institution but something entirely different to a patient. There needs to be a forum or individual ombudsman for support when things go wrong and a protective mechanism in place without having to revert to legal counsel. Communication is key and, in fact, solves most issues. Who speaks for the patient? Patients are afraid to contact doctors because of physicians' time limitations and a fear that this may jeopardize future care. Sometimes, this is too late. It is incumbent upon Canadians, as a compassionate Nation, to stand by those who are in need and who are unable to advocate for themselves. Although this may represent a minority of cases, one case is one too many. Specifically ovarian cancer patients need education and resources from diagnosis to death, including not only the physical but the emotional support. Today when patients are diagnosed with ovarian cancer, many leave their doctor's office without any resources. They go home stunned, shocked and in fact totally emotionally isolated. We need to provide both the public and medical personnel with accurate information about ovarian cancer. Awareness will achieve many things. Most importantly, it will result in the detection of ovarian cancer in earlier stages when survival is much improved and women can return to their place in society as healthy and fully contributing members. No one wants this more than the patient herself. Ovarian Cancer patients are not abusers of our health care system: they just want their fair share of resources and supports. Overall, I am advocating that: 1) All women suspected of ovarian cancer will be referred to a gynecologic oncologist at onset of a suspicion of malignancy (exception noted - see #4) 2) All women will have initial surgery performed by a gynecologic oncologist (exception noted - see #4) 3) All women will be educated in an unbiased manner as to the survival advantages of specialized care; 4) In remote communities where a gynecologic oncologist is not available (and the patient does not wish to commute outside her community), a consultation between all affected parties will take place 5) All women at the time of initial will be given appropriate and timely educational material covering the basic facts of ovarian cancer; 6) A nationwide Ovarian Cancer education programme will be established in all communities - for both the public and health care professionals 7) A nationwide Ovarian Cancer Survivor panel will be established to ensure that a patient's opinion/participation is sought in any discussion or proposal (research or community/hospital based program).(12)
Since he had told me over a year before to take Metamucil, and had put me on Pep-cid in February, I was sure it was my colon. I started to ask him about the different colon tests. That's when he got downright hateful. I felt ill-prepared to get into an argument with him about those tests, since I knew so very little, so we moved the discussion to the ovaries. My thinking was--I'll eliminate the ovaries (and probably bladder) as possibilities, learn about the colon tests, then throw my energies into getting that properly diagnosed. So we decided I'd go to my ob-gyn andsee if there was a problem. Since it was about 5:00, I knew I'd get the answering service if I went home to call, so I went straight there. (Before I left the internist's office, he wrote down more directions for taking Pep-cid.) When I told the person behind the ob-gyn's desk that my internist and I thought I should be checked, she insisted it was not time for another check-up--I was checked in December and this was only September. I kept saying that I really felt I needed to be checked. The person who did ultrasounds one day a week (Wednesdays)happened to be there. Although I had never had an ultrasound, I had seen her before andshe remembered me. She came over and I explained the situation to her. She said maybe we could do an ultrasound. I said,"Good, can we do it this Wednesday?" (This was late Monday, Sept 8). "Oh, no, we're full--we couldn't possibly do it then." I knew I needed to get that off my mind so I could focus on my colon, so I just keep asking nicely if I could come any time after 12:00 on Wed., no matter how late. Finally she said "well, come on in at 3:45this Wednesday." I felt a little guilty then and said "are you sure? I know I've kind of insisted and I don't want to crowd your schedule too much ." She said "No, come on in then because we're booked till October 29." On Wed. Sept 10, when she did the US, she had trouble inserting the probe.
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