Five Hundred Images

lots of repetition from older posts–just had to write about it again to remind myself

I have been told I’m cured of cancer, but have also been told that the 5-year-rule doesn’t necessarily apply to lung cancer. So…..every time I fall or get dizzy I assume it’s metastatic cancer gone to my brain. Every time I have trouble breathing, I assume it’s come back. Any ache in any part of my body most surely is metastatic lung cancer. Every cough….well, you get the gist….I believe I’m a walking petri dish waiting for something to develop. (It has taken years of therapy to manage this anxiety but I’m finding fear trumps sense most times)

Some may remember, six months ago I was miffed at the radiologist, or the imaging center, for losing my scan. I sat for two hours in a little room at my oncologists office waiting for words I had desperately wanted to hear. I received a two paragraph response within 5 minutes of finding my scan. How can a radiologist read a scan that quickly?

Anyway, most of us probably know of the mega-conglomerate-medical-groups. We’re sold on the fact that we can go to any doctor in their system and they have access to all our health records. We can even go online and look up most, but not all medical information. You know, some of it’s too much for our little ol’ brains to comprehend so they don’t share all information.

My oncologist works for one conglomerate and I have been getting my scans at the competing conglomerate. She assured me the conglomerations communicate with each other. Ha!

I have to reiterate thatΒ you must be your own health advocate.

Always.

I will never forget what it felt like to recover from the easy Video Assisted Thoracic Surgery (VATS), not the kind where they split ribs, but painful just the same. Every time I do something while I huff and puff, I’m reminded that I no longer have the lung capacity I used to have–add to that, I have asthma–add to that, I’m out of shape–my fault. πŸ˜€

I became a little lackadaisical in my quest to keep my doctors accountable and on their toes, and was left with six more months of the scanxiety hell.

I’m having my next scan at the conglomeration my oncologist is affiliated with. I armed myself with my stack of cds full of previous scans, including the last one with the two paragraph report. You can imagine my shock when the records lady told me that my last ct scan had 500 images and that it would take a while to copy onto a cd.

Five hundred images! Did they even look at the images of my spleen, liver, and right lung? The areas which we were watching? I don’t know. I wasn’t able to hover over the radiologist to make sure they did their job. All I could do is tell my oncologist that I had lost all confidence. All the mental therapy I have had has only made my anxiety marginally tolerable this time.

I’m thinking this is all due to one person not fully doing their job (in my opinion).

Again, make sure you are your own advocate—and quit smoking. πŸ˜€

 

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About April

I'll come back to this when I find out who I really am. I've been through some extremely rough patches but they have made me a better person. I blog if my brain is functioning first thing in the morning.
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19 Responses to Five Hundred Images

  1. aviets says:

    It’s really smart of you(no surprise) to be so proactive this time around. I can see that would help not only make sure they do it right but also help you keep your power, which is really important.

    Question: do you think it would be appropriate to say you have some form of PTSD? I only ask because I’ve recently felt I have PTSD-like symptoms related to a lot of the crap I’ve been through. Not the typical stuff people usually associate it with, but I do think it’s accurate in my case.

    • April says:

      I’ve thought about it but never brought it up with my doctors. As a Google Self-Diagnoser, I would think that I may have some form of it. I had lost too many family members, moved across country, and kids moving out all in a very short time frame, when I got smacked upside the head with a cancer diagnosis.I think I will bring that up with my therapist. I’m not going to with the pill pusher because I refuse to take one more pill. I’m really striving to recognize triggers and take care of myself. Maybe, some day, I won’t have to take meds.

      • aviets says:

        That sounds very sensible.

        • April says:

          There are times I look back and can’t believe I survived 2008-early 2009. It seems like it happened to someone else. I’m thankful I finally lifted myself up from the pit and that I’m no longer afraid of falling back in. Things happen in life, and I hope I know how to deal with them…..just not happening all at once.

          • aviets says:

            I think I have an idea how you felt durning that period. In my late 20’s I had a summer when I 1) had a miscarriage, 2) my husband had his very severe emotional breakdown, and 3) I found out my grandfather was a pedophile. TMI, really, but like you I don’t have a clue how I survived that time.

            • April says:

              We are strong ladies! I’m glad I finally got over the extreme fear that something would happen and I would completely fall into pieces. I would be the end of me. I feel ready to deal with the next, but I don’t want too many challenges in the same few months.

  2. reocochran says:

    I am so excited, April. I believe this result is extraordinary and excellent to hear. Now, I do realize the serious fact is you still need follow up exams, tests and repeat door appointments. This still is a positive and extra special result! Hope you and husband or family will go out and enjoy dinner or stay in and breathe a little more easily, “pun intended!”
    I believe in what you said, a very wise opinion of someone who has been there! Be your own (or child’s) advocate!
    Can you believe a sports medicine surgeon wanted to do surgery on my (then) 13 year old’s knees, April? I consulted my pediatrician again and he sent me to see a rheumatologist at Columbus Children’s Hospital. Taking fluid from the knee sending out to test confirmed it was JRA and surgery would have NOT been the correct course of action for my daughter! I was glad I didn’t follow “blindly” the surgeon but was an “advocate!” πŸ™‚
    Went to make a pot of coffee and am going to write as many replies in an hour that I can. I have a baby name picture to draw and paint today and a late (3pm) birthday party to take my 2 grandson’s to. Hugs, Robin

  3. meANXIETYme says:

    Yes you have to be your own advocate. And yes, that sucks so much. We’re already tired and frightened and overwhelmed, and yet we still have to find the energy to fight. I applaud you for being able to do that for yourself!
    I’m struggling, too, with that anxiety over my health, not only with the cancer diagnosis but with other issues. Now I’ve got some “slightly” elevated test result that makes me fall back into that health anxiety again…really hard.
    It’s so difficult to crawl out from under the anxiety and let your “real” brain do the right work. Urg.

    • April says:

      I’m putting off a test to check my blood sugar and A1C, but I know nothing has changed because I didn’t hold up my end of the deal by changing my diet and exercising. I don’t want to know my numbers but I know I will eventually have to return to the doctor.

  4. Good advice April.. Sending you love, and keep those thoughts as positive as you can.. And I can see well how your confidence waned when your records went missing. …
    Keep as stress free as you can my friend.. Sending Love and mega hugs xxx
    Sue

  5. Fantastic information and post April. The advise is invaluable!!!! Or…wait, EXTREMELY valuable. I don’t know how anyone could have a job in that field and not be extremely aware of how their responses are affecting another human being’s existence.

  6. Glynis Jolly says:

    I deplore the gigantic medical groups. They have their own built-in system to avoid responsibility — “Oh, Dr. Soandso must have done that.” Or even worse, they protect each other from taking the responsibility. I think these groups dehumanize the medical practice, making it more like an assembly line as if all of us are just things that need to be put together in a certain sequence. There isn’t such a thing as a ‘referral’ with them (you’re just told to see someone else in the building) so you don’t know what you’re getting or how good the doctor is.

    Although it’s definitely true that smoking can lead to lung cancer, there’s lots of other things that contribute too. This includes not getting enough exertion in our daily lives so that we expand the lungs and, therefore, get rid of whatever is bad in there.

    (Just my opinion. πŸ˜› )

    • April says:

      I didn’t even add my gripe about what insurance companies allow. Another day…
      I know that not all smokers get lung cancer and that non-smokers get it as well. I thought I was okay because I quit over 26 years ago. Anyway, I know how to build my lung capacity and sitting on my ass isn’t the way to do it. I’m making a promise to myself for my health’s sake.

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