Last week I wrote a blog post that explained my confusion and asked for some advice from readers concerning my upcoming medical procedure when I take the Radioactive Iodine treatment for my thyroid cancer.
I got a question from Dorothy, “So why are you asking us who have no knowlege of what you are going through for advise ??? And even if we do know what is happening with you, it may have not been the same with “us”. Please ask your Dr these questions—and as for searcrhing the internet for answers, you’ve got to be kidding–ASK YOUR DR.”
Here’s a little bit about me. I am a researcher by nature. I went to college and fluctuated between being a elementary education teacher or being an English teacher. I took lots of writing classes and did lots of research papers. Researching just became a way of life for me. I research everything. I ask for opinions about everything. I collect information from everywhere I know to….that’s me. I strongly believe in doctors but I don’t put them on a pedestal and think they are the only source of information. I gather…I weigh…I analyze….more than all of that, I question. It’s me. I am a gatherer. It’s who I am. I come by in naturally. My mom was a gatherer too.
I have a print that I have been looking for. It’s this one below. I feel it’s symbolic of me. I gather.
I am aware that there are other people who do not do that. They are not gatherers. I know they go to the doctor. The doctor says, “do this”, and they do it, story over, problem over, the end. I am happy that they got what they needed…but that’s not me. That’s now how my brain works.
I believe this is my body. I believe this is my life. I believe that there is choice in this for me. I am not someone who blindly trusts. I question. I gather. I weight. I analyze. In the end, will I follow the prescribed treatment the doctor gives?…likely. But it won’t happen until I feel informed and I make the final decision.
Through these last few months I’ve realized that I live in a global world. There is a blog reader who is a regular reader who I know is going through just what I am going through right now only she’s about a month further along in the procedure than I am. I have gotten so many emails from others who have said their husband just went through it…their sister went through it….or they themselves went through it a few years ago. All of these people are great resource. All of them have a valid experience that I can gather information from.
The comment left reads, “it may not have been the same with “us””…. You’re EXACTLY right. That’s why I asked the questions. I’m collecting the information.
I want to gather everything up that I can. For me, this is serious. This is my life.
For me the doctor can tell me all sorts of side effects…but I’m curious. She can tell me clinical things, but I’ve come to know that clinical is not always life though.
As for searching the internet…as a gatherer, I do. When I was told I could get my thyroid taken out being the nodules were so large, immediately in the office before we knew it was cancer, I said take them out. I had to make a decision based on what the doctor said and I did make it there on the spot-BUT- I also went home and read the pamphlet they gave me. I also read all I could about it on the internet….No, I am not at some chat room…no, I am not on Wikipedia. There are good websites out there with solid information. I am so glad that I did. For me, the gathering reinforced that the decision I made quickly was the right decision. It also lead me to ask more questions that could be answered at the next doctor’s visit. It also made me a more informed patient the next time I went to the doctor. Like I said, I am not good at blindly following. This is what works for me. This brings me peace of mind.
I believe knowledge is power. I believe that knowledge can come from MANY sources beyond doctors.
Rest assured, my questions and concerns are being answered by medical professionals as well. I’m a gatherer. I wouldn’t bypass an important source.
In closing:
I’ve said before that the blog is my journal…it’s me. It’s my life. At the time I wrote the post, it’s what I wanted to say…it’s what I wanted to ask. It’s information I wanted to gather. There are other people years from now, who are gatherers, who will stumble across the post. They will likely read the blog and say, “I have the same question”….”I wondered the same thing”….”I’m glad I’m not the only one”….”I was confused by that too”. The blog post was for them and it was for me, all of us gatherers.
I am writing this post for people like Dorothy who say, “So why are you asking us who have no knowlege of what you are going through for advise???”…I want you to understand that there are gatherers in the world.
Perfect explanation of how you feel and what you think! I love that you research the way you do. My brother was finally able to get a correct diagnosis for a problem because he refused to give up looking for answers from what ever source he could find. It took going to 5 different doctors to get a diagnosis of a brain tumor that took his life last June. Don’t ever give up you interest in research. It’s how we learn!
I agree with you, I am a gatherer too. I talk a lot of things over with friends. I have gotten my best medical referrals for doctors by doing this. I do follow the instructions of my doctors but I research it on my own also.
I understand perfectly where you are coming from. I go out and gather all kinds of information. Too me, the more information I have, the better decision I can make. We all know a single doctor often doesn’t have all the answers and will do things the way they like to do things. And I too want to know how things were with others. It doesn’t mean I expect the same for me, but I want to know the possibilities so that I can be prepared and know what to look for in case it does indeed happen.
My Granddaughter Octavia is 14. She Just took the Iodine pill Friday(8th). She was so scared, that when I tried to joke with her she yelled at me. Yes, I understand. She can only be with her folks until Monday, and has to stay 3 feet away from them. And a Month from my heart baby Grandson. Mom said she is doing great today, but l be glad when I can hug her. Good with your pill taking.
What Dorothy didn’t understand, perhaps, is that you were not asking for anything from those of us with no knowledge or experience. You were asking those of us with some knowledge/experience to share that experience. Jo, keep doing what you know works for you. Mary Jo, my condolences on the loss of your brother.
I think that I must be somewhat like you Jo! I need to know what to expect! The more information or experience of others that I can gather the more informed I become to make the best decision for matters that concern my health especially how I will handle or even take care of my health. Doctors have learned how to treat illness, cancers etc but it doesn’t mean they have personal experience of those treatments. For me gathering info from those that have personal experience is not only helpful in making my own decision if I’m going to follow the same treatment plan but also very reassuring when I am in treatment!
Bravo. I read her question and it really rankled me. I don’t usually call out folks but it just seemed so mean.
Excellent explanation Jo.
You’ll do well BECAUSE you ask questions.
Godspeed woman.
Fantastic answer. Gathering you go girl. Keep your chin up, head held high. God bless you.
Ignore the Dorothys of the world. You do not need to explain yourself to us. If Dorothy had nothing nice to say, she should have chosen not to comment.I personally have no connection to thyroid cancer and hope I never do but I sincerely appreciate your willingness to share your experiences and perhaps help someone else. May God bless you through this journey.
Hi Jo,
I was diagnosed with breast cancer about the same time I started following your blog. I would do just as you are doing…gathering information and gleaning what is useful from the answers. Hang in there.
kathy
Amen! You are right to gather information and ask questions. Why would you not? Keep doing what you are doing. You’ll get through this with less stress because of the questions you asked and answers you got. Being prepared is always good. Many blessing for you and family.
Applause, applause, Jo! I look at your blog as a circle of friends. Friends encourage, comfort and share. Keep researching and may God grant you peace as you proceed.
We all operate differently, and we probably all know people who self diagnose from Dr. Google. I think the healthiest view to take might be that while the comments and advice here will differ and sometimes seem negative or questioning, everyone wants the best outcome for you. And, anyone who doesn’t? Just assume they do too, they’ll never know. ;^)
I continue to marvel at those who are so verbal and judgmental when you dont’ fit their mold. I admire that you have the kindness and patience to explain why you do what you do…..you certainly owe “us” nothing.
It is you who must make peace with your every decision regarding your health. I am a Registered Nurse. I believe and tell my patients and family that each and every one of us must have a patient advocate who questions and assures that “this” is best. I asked questions for each of my parents so that they had all the information they needed to make their final life decisions. And then I was with them through their final days as they chose no treatment. They taught me a great deal about grace and dying with peace in their hearts.
And you and your family are fighting for your health. Yea you!!! Take good care Jo :-)
This may sound crazy but I gather too. I want to know the worst that can happen so I can be prepared . Then when the worst doesn’t happen I’m so relieved. I guess that’s my defense system working. When I was told I had ovarian cancer I had to have a pity party first to get all the emotions out of the way. Then I reasoned the worst that could happen was I could die, if I die I’m going to heaven so what’s the problem. After that I calmed down and could make decisions but I have to be able to deal with worse case scenario first. We all deal with illness in different ways….no way is more right or wrong. Whatever gets us through is right for us. Gather all you can it’s certainly not going to hurt to know more. Peace of mind means a lot as does the positive attitude you have. Take care of you!!
Keep on asking questions. I had a different kind of cancer than you…I found Doctors that encouraged questions. Being told you have cancer is scary…I love your questions and you are getting very helpful, loving, caring answers…don’t not stop asking…we love you and are praying for you.
Doing that research is how you KNOW what to ask your doctor. I had my migraines for decades (and saw quite a few different doctors about them) before my husband’s doctor prescribed him anti-nausea medication for his migraines. My doctors knew that I puked, but they’d never offered me any alternative….not until I called and asked if it was an option. Once I knew what to ask for, I had a solution to the nausea the same day.
I’m glad that you’ve got a good doctor and that you’re doing your homework.
That print is “The Gleaners,” by Francois Millet.
I like information too. My mother called my father “an information gatherer,” because he liked to ask people questions and find out about their work and hobbies. Keep thinking and choosing for yourself! It’s better than blindly following someone else’s words when they don’t know your body, lifestyle, or habits. Good Luck
First of all, you shouldn’t have to explain yourself, however as a blogger, I know why you did. Excellent response. Hugs and prayers for gathering all the necessary information from where ever necessary to get the peace and comfort of a decision I hope I never have to make. :)
Well written, Jo. Good luck as you proceed with your treatment.
I agree. I think you have great questions and sometimes we would like to have answers before the next doctor’s appointment. We are planners, and by gathering information, you will know what to expect and how to prepare. Keeping you and your family in my prayers.
Doctors are not omnipotent beings; they are humans just like us. It’s important for us as patients to do our due diligence and research out conditions so we can be as well informed as possible. Our healthcare should be a partnership between patient & doctor; not an authoritative relationship like between parent and child where the parent says do and the child should just obey. Ask any doctor and I’m sure they’ll agree. Good for you jo for doing your research, it is so important.
Ditto. I can relate. I don’t have this issue but if I do in the future I know one of the places I’ll look for info. Thanks for asking and sharing.
Doctors do not know everything! Gathering as much info as you can, from many sources, is always helpful. Good luck with your procedure.
Not only are you a gatherer, you are a nurturer. You are willing to share what you are going through in the hope that you may help someone else. Anyone who puts themselves in a doctors hands with complete trust is making a big mistake. Just remember, some of those doctors just squeaked by and some should never have become doctors (like the one who said “hurts, doesn’t it?” to me as he did a nerve ablation without knocking me out!). Good for you for asking questions and making informed decisions. Prayers for a quick return to good health!
I’m a gatherer too. Your doctor probably has not had thyroid cancer, and I’m sure it helps to hear from those who have been there. The fact that you are getting info from so many people who have had thyroid cancer has to be encouraging: they are all survivors! I wish the same for you.
I’m going to guess that the person who was so critical has never had a serious or chronic illness—most of the doctors I have gone to are in such a hurry that they refuse to take the time to answer questions. Where I live, almost all of the medical facilities belong to one large corporation, and the doctors are just employees of that corporation, so I always wonder if they are prescribing a certain drug or treatment because their upper management has told them to do that to maximize corporate profits or because it is truly the best thing for me.
I had to have thyroid surgery and was very concerned because my sister had thyroid cancer. I researched for an hour or two every night and learned a lot and it made me feel more comfortable knowing. Fortunately I didn’t have cancer, but all the information I got was the best thing I did for myself.
Gathering information and being informed about your treatment is a good thing. It helps you ask the doctor the right questions. Doctors aren’t gods and they aren’t always right or just forget to tell the patient some things. Just keep on doing things the way you like to do them. I love research too…that’s what I find so fascinating about genealogy.
Jo, You are doing the right thing. You can’t learn if you don’t ask questions. One thing my mother told me: doctor’s don’t know all the answers, that’s why they call it “practicing” medicine (my mother was a nurse)…
Keeping you and your family in my prayers throughout your treatment and recovery:)
Back in 2011 I had a mastectomy, followed by chemo, radiotherapy and herceptin. Before he laid out the details of the three treatments he was going to advise me to have my oncologist asked me what sort of person I was. Did I, like you, want to know all the facts, the pros and cons etc, or did I just want to blindly follow his plan. He said that over the years he has found patients broadly fell into these two camps. I opted for the former, listened carefully to everything he told me and went away for three weeks to decide on what I was going to do. I did accept everything he suggested but only after I had thoroughly thought it all out for myself. So, I agree with you. Find out all the information you can, ask all the questions you can and then you will feel more positive about your treatment. Good luck.
Great response to Dorothy’s comments which I thought were harsh and not necessary. I took from what you said on the post that you wanted people that had the same experiences you are having to tell you about what they went through. I don’t usually take the time to read other peoples comments but I did on that one because I thought you had some good questions and I wanted to read about other’s experiences. I always think that the more information a person has the better off they are when they have to make a difficult decision. I also feel t even though I may not have gone through what you are going through I might be able to help someone down the line that is by reading about what others have experienced.
Have had surgical procedures in the past that have changed my life-and not always for the better. Granted everyone has different experiences but it certainly DOES NOT HURT to find out how others were affected by the same type of procedures. Doctors are not always kind and forthcoming. I have gotten the “don’t bother me with your questions woman” treatment more than once. Yes, ask a doctor but if you have a large support group, it certainly does not hurt to ask them questions either. I support you in asking others about their experiences. I do not blindly trust anyone and that includes doctors. Some are good and some bad. And, some are kind and others are not kind. Actually the best resources to ask-nurses and physician assistants.
I totally agree with your ” gathering information”. I worked in healthcare for almost 40 years and was appalled at the people who thought their doctor was a god. They followed awful recommendations and never questioned the most ridiculous advice. We DOneed to gather and research and be our own best advocate. You know your own body as well, and know when something is not right. Our health care professionals need courses in listening to thei patients.
Ok, I’ll admit it. I am a doctor. Not in any field related to thyroid cancer, but a practicing physician. I agree with many of your readers who say ‘it is a partnership between you and your doctor’. You are the expert on YOU. I can provide some guidance and information, but I encourage my patients to gather all the information they care to get and then discuss any questions with me. Your doctor does not have time to answer every question you might come up with. Other people who have been through the treatment can offer very valuable practical information.
Hugs to you.
Well said Jo. I live in England and worked for 35 years in public libraries until taking early retirement a couple of years ago. In all those years I can’t possibly tell you the amount of information I have given out and I always found it best to point people to more than one source of reference to double check anything they wanted to know. Not necessarily medical I know, but the theory is the same. As the saying goes ‘forewarned is forearmed’.
I wish you all the best and hope everything goes well for you.
I’m a researcher as well, and my friends ask me to help them with research. My one friend was not feeling well, and her doctor was pooh-poohing her and through our research, we found information that led her to ask her doctor for certain tests, which revealed she had high blood pressure and diabetes – basic tests he hadn’t even done.
My doctor encourages my questions, and also understands alternative medicine and when it can be helpful (and also when not to!) You and your doctor sound like you have a similar relationship – good luck to you!
Love all of the kind comments you are getting. Just know that there are a lot of us out here keeping you in our prayers! We are here for you for whatever questions or needs you might have. You and your doctor are the ones with the final say, but asking questions and researching treatments give you a leg up on knowing what to do! Doctors are human after all, and don’t always think to ask what might be an important question. If you have done your research you will be prepared to help with your diagnosis and treatment.
you go girl!!!!
Good post!
I agree, good post and I like gathering information to, gives me lots of question to ask when the need arises.
I have been reading your blog for only a short while but I remember you saying other times that this is your journal. I agree with you that gathering information from wherever you can is beneficial. I hope you are able to make informed decision based on what you discover. My niece recently had a baby and was having new mommy jitters with breastfeeding. I offered my 2cents worth and followed it by saying listen to the advice that is offered try different things to figure out what works for you and forget the rest. Shed a few tears and say a prayer or 2 and enjoy your new baby. For you …get ready for the addition to your family in the coming months and use the information that works for you! Good luck.
You are so right, Jo. My family doctor tells me doctors don’t know EVERYTHING, that’s what it’s called “a practice”! And I wholeheartedly believe in being your own advocate, asking questions, researching, finding answers you are comfortable with. I recently did just that re a medical issue that I’ve had and it has help find the answers I need, along with my doctor’s expertise and advice! Thank goodness for the interest and those of us sharing information and supporting one another. Good luck with your journey, and keep quilting! :o)
Amen to you………. I’m in the “gatherer” club also, I must research before a decision is made……..
In another lifetime, I should be a researcher also. Sometimes you do not even know the questions to ask and others can give ideas for that. You are also educating the rest of us, when you share information. I don’t believe anyone should blindly follow any one piece of advice without research, but some people are not researchers and if that works for them, good for them. Stick to what works best for you
Lots of prayers on your recovery.
You are wise to do research when you are also wise enough to sort through that data and turn it into useful information. And you are. I appreciate your whole post explaining hour thought process and it convinces me (not that you needed to) that you take to heart the helpful data and discard the non-helpful data.
I was a software developer in my former life, so I analyze everything. Admittedly, sometimes too much. But information is a good thing.
Wishing you all the best.
Jo:
I was quite upset reading Dorothy’s remarks last week, and am glad that you addressed this in your blog today. Having been through BC twice I have found that gathering information in the same way that you do has been most helpful and has taught me an invaluable lesson: I am in charge of my own body The doctors can guide me and advise but ultimately I am my own boss. I think you are a very beautiful person and love reading your blogs, having followed you for a few years now. I wish you nothing but the very best and I will remember you in my daily prayers. Hugs to you
I had hip replacement surgery last summer and beforehand, I spoke with anyone I could about it; I got a lot of great tips about the surgery and recovery. I also read the binder my doctor had given to me from cover to cover. The information in the binder was really useful, but I still had to take all the post-surgery instructions and make a chart that worked for me (this 3X a day for this amount of time, that 4X a day for this amount of time, these exercises, this shot, etc.) I have a very organized sister who helped me make the chart, too.
In addition, I learned more from the internet and speaking with others than I did from the binder when it came to what items I needed — cane, shower chair, crutches. I was able to get all these things in advance for free from Craigslist. I wasn’t scrambling after the surgery for them, like I’m sure some people do.
Preparation is extremely important. For most people, surgeries and procedures are a rare thing (thankfully) and dealing with them is your “life” for a while. For a doctor, they’re commonplace. They hand you a binder or tell you a few things that you’ll have to do, but they can’t translate that into “this is what you have to tell your childcare families” or “don’t even think about crutching on those crazy, uneven, front steps of yours.” We have to read everything, talk to everyone, and then figure out what works for us.
And my bit of advice, which I’m not sure anyone gave you — prepare food ahead of time and/or have easy items people can make!
Best of luck, and I wanted to share with you that of all the blogs I follow, I always click on yours first. It’s a wonderful mix of quilting and life.