We need to change our health care system. I am glad that it is becoming a hot topic these days because our system is screwed up!!! I don't know what I can do to change it but if I could, I would be a member of that committee or board to give my two cents worth!! I also think I should work for an ostomy company to help them figure out how to make these products better, more practical for all occasions. I just hope to live to be able to have these jobs. I also would like to be a patient advocate for cancer patients, someone they can go to when they are having the problems I am having: unsure which physician to call for different problems, not getting answers, confused, frustrated etc. with the system and not getting the treatment we deserve. ugh! I feel better venting a bit.
I went to see my ob/gyn who is actually the physician who did my total hysterectomy in January along with the rest of my surgery. She specializes in gynecological oncology. I saw her because of the swelling I was having around my left lower abdomen. Every other physician kept telling me I needed to see someone else for this. So they got me in to see her yesterday. She took a look and said she thought it was lymphedema, or swelling because of a possible blocked lymph node down there. She seemed to think this was because of the abnormal cells (cancer cells). She wants to see the results of the recent MRI I had, which I don't even know what the results are yet, they haven't called me to tell me anything. So I called yesterday. I need to call again because I haven't heard from them. I also had to call MD Anderson back because I have tried to reschedule my appointments that are set in November, but I need to push them back a few weeks. I have called 3 times already. They sent me another, I received yesterday in the mail, it was the same schedule as before, ugh!!!
I am just so frustrated right now, I really have to do it all myself and really be my own advocate and that is really hard with so many other things going on. It is hard to keep up with it all.
On a lighter note, Angie, my friend from Children's Mercy, who I used to work with just moved in with us for a little while. Ella absolutely loves her and it is nice having her here. She will live here for a few months to help so she can save some money and she will be helpful to have around for me as well.
My mom is doing okay. She has been getting up and about more, but still gets achy and tired and needs to take it easy still. She thinks she should be up and well by now, she says she feels useless. She said she was sorry she was being a "panty waste", hehe, isn't that hilarious. ahh mom, I love you, you are funny. Now I know where I get this same attitude.
Thank you to all of you who have shown me so much support lately. My neighbors are, as always, amazing to me. They always rally for me and I truly hope I can be around to be there for you all someday. All you bloggers, I love your support as well. I really don't feel the need to see my therapist that much, I think my blog really is like my therapy. As you can tell, I like to use it to vent all the time.
Everyone, enjoy this weekend. I will talk to you all soon. shawndra
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15 comments:
I know exactly how you feel. My husband had a stage three malignant fibrous histiocytoma soft tissue sarcoma over two years ago and we went through the same things you have been dealing with. I really believe the only reason he is alive today is because I pushed on everyone to speed up his treatment. I became known as "the relentless one". I told everyone that I was going to take that as a compliment. Now I am going through the same thing with my sister. She had cancer (extraskeletal myoxoidchondra sarcoma) 18 years ago when she was in her 20's. It has returned and is also in her lungs. Because she is using the same ortho doctor and chemo doctor that my husband used I was able to get her to see them very quickly (I am not above dropping names if it gets us in faster to see a doctor). She also put my name down as her advocate so I was able to do all of the phonecalling for her to get info. from MD Anderson and other doctors. I have said many times that I don't know what people do that are elderly, so sick they can't make calls, or just don't know what they should do. Until you have been through it personally you really have no idea how bad the system is and how difficult it is on the individual. You are already sick and then to add insult to injury you have to put up with a bunch of mess just to get answers to your questions. I love it when the person I am talking to tries to justify why they have not returned my call by saying,"I have been really busy because there are a lot of sick people I am trying to deal with so I haven't been able to return your call for three days". What am I --------- wood? I don't know what the answer is, but all of my friends have told me that if they ever get sick I'm going to have to be their advocate. Hopefully that will never happen. I hope you have a great weekend and I am praying for your recovery
Yes I know what you mean! I had a stroke after my 1st pregnancy and trying to coordinate my care and get all my dr's on the same page has been frustrating over the years. If I don't push they don't call or do anything to help. You need that advocate cause you're so exhausted and just don't have that extra fight in you to go after the dr's. It's enough to take care of yourself physically!
Am praying for you, that you get the answers and care you need. Blessings.
Do I, too, ever understand your frustrations. It gets so confusing with so many doctors. I've had a spot on my lung they've been watching since June, and I sometimes cannot even remember who ordered the last tests, who who should be sent results, or who should be following up with me. And, yes, of all patients who should not have to wait, it should be cancer patients. To us everyday is like a month in the scare and imagination factors. I've told some of them, "I was a language teacher, and I know nothing about this, so you'll have to explain this to me in terms I can understand!" Sometimes I think being confused is a diversion from what we are really dealing with, and keeps us from thinking about the real issues at hand!
Thinking about you and praying for you. :)
Katy Z
Lee's Summit, Mo
Dear Shawndra,
You are the best. It is so good to hear from you. A job as a social worker in our hospital's outpatient cancer center might become available. I wonder if there would be any way to be of help to cancer patients as a social worker. What would it take? How is one helpful? How, if I haven't walked in those shoes, might I have any idea how to be helpful? Joyce
you are going to be one busy chick with all those new jobs! But I have no doubt you could do any of all of them if that's what you wanted. That too is a trait you aquired from your parents. Tell the "panty waste" mom to take it easy. Recovery from this will be a lot better than a reinjury. Try to keep the chin up regarding "the system", it is a grueling process that no one should have to deal with. Have a great weekend, it's looking to be a fantastic one
Shawndra, You stay on them sister!!! We are talking about your life here!!!! Mine and my Mom's favorite movie (well one of them) was Terms of Endearment. I tell you what, Shirley McClain didn't have anything on me when it came to my Mom. I remember throwing many fits to get her her meds. Don't tell me NO!!!! You have to keep fighting and fighting but you have just what it takes and then if you don't have Doug do it. I watched Oprah the other day with the Healthcare issues and I wanted to jump through that TV and tell them all a thing or two. On your blog alone everyone has experienced it. My prayers and love go with you with each call (and my big fat attitude!!! Ha.) You deserve the very best care you can get. You go girl. Melodie Chrisman
Service is a total lacking thing these days. You should not have to be dealing with issues like this. It makes me angry!
Susan
P.S. I read you all the time but I think this is the first time I've left a comment.
Susan
Shawndra-
You truly are amazing person! I can only imagine your frustration. Keep strong!!! Please know we are here for you!
The Mudge's
Hi, just recently came across your blog. My hear goes out to you. Your dx and your frustration with the medical system are so unfair to say the least. Keep on it, persistence pays off. I've read over some of your past posts but not all. Just curious about your dx of rare CA and what your initial symptoms were. I hope you're doing well.
Monica
Shawndra; hang in there with the medical personnel; you are right that one has to have, or be one`s own advocate. Just be glad you are not in a country with socialized medicine because it is way way worse ; you have to wait months for surgery and weeks for tests & test results, and the hospitalization is very inferior.Know that this is by far the best country to live in when you are sick, even though the system might need a litte tweaking!Here, if you don`t like one doctor , you can change to another etc.& one has way more choice.Our whole family sends you all our positive thoughts; keep up the fight and love from us all.
Hi! Thank you (and Doug) for welcoming me and letting me stay with you guys for a while! I'm so excited to spend some time with you and Ella! I've missed you guys! It is a big help to me and hopefully I'll be a help to you-I'm there for anything ya know?!
You are so right about health care and so was the last poster who said we are lucky to be in America. I've heard some crazy stories about hospitals in other countries and I think it's crazy to have to wait a couple of weeks or a month for a schedule that to the person having it should be done right away, but imagine having to wait months! You remind me to do my best to advocate for my patients at Children's and I hope I do so! What is really bad is you work in health care, have family and friends who work in healthcare and you see the problems from both sides and it is very frustrating to not be able to change it! I feel especially sorry for the people with chronic health problems that don't have the help to get to appointments or day care or babysitters fo their kids and have no medical knowledge. You would be a great advocate for patients-who better than someone who has experienced it from both sides?
Ang
Shawndra,
I hope you & your family are enjoying this beautiful weather we are having this weekend. You are in my continued thoughts & prayers!
Jennifer Teegarden MD
Shawndra,
I think all physicians and hospital administators should act as a patient of sorts, with some chronic illness, and go through their hospital system to see what its like. Then start brainstroming ways to make it better. Until they go through their system as a patient, they really won't understand the frustration. I hope you write a book of your experiences to help the cause! Your in our thoughts.
Love,
Mark and Debby
Debby
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