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Another round of doctors..

Episode C - Can't Stop


This week is suppose to be my last week of appointments until the end of the year. So my December Doctor Madness tour was going to include my OT, Oncologist, & Family doctor. My OT appointments are so standard now that it just seems like my normal routine. Instead, I was really focused on my what my doctors would say. Last appointments of the year... or it was supposed to be!!!


First Up... Oncology!



It was time to make my Oncology follow-up. My real irritation is not that I have to go, but that I forgot to have them draw my blood for labs when I was already there last week for my scans. Usually I remember to ask them to do this, but I forgot last week. So, I would endure another needle today. Head thunk!

The blood work section of the center had gone through a transformation since my last visit. They had rearranged the seats... so that no one was facing each other. They had added curtains to try to separate the new seating arrangement... effective, but ineffective as the curtains are not really dividing anything. I could still see everyone when I walked in and it made me feel more confined. I guess there must be some new HIPAA laws.

Then there were a bunch of new faces... new nurses. When my name was called, I was greeted by someone I had never seen. She was less friendly than my previous nurses, but I was going to win her over. I am not sure I did... and I usually do!

Instead, I think my veins annoyed her. Normally the cancer center is the best at finding my very challenging veins... today I was not so lucky. I squeezed and squeezed my hand. She tapped and tapped on my arm. She was still stumped after many arm slaps. Then she got the idea to put the blood pressure cuff on my arm and pumped it up. We waited.. and waited... and waited! I finally had to let her know that my hand was really tingling and I was going even more numb than normal. Finally she went for it and dug around until she finally got inside a vein. Ouch! That is going to leave a mark!!!


It left a mark... for days...


So the blood work took longer than normal. And it really did not matter, because I ended up waiting even longer than normal in the doctor's waiting room. It was extremely slow... unusually slower than normal. And we all know how long doctors can take some days!


Waiting around 
in another waiting room...


Nothing is easy... and today was no exception. It was one of the first times the center had computer problems. The entire system was down. They could not access any of the records - no blood work report and no scan report online. It is a good thing that I do not fret over getting my test results!

My take on follow-up scans and worrying is not like most cancer patients. From what I have seen there is a lot of worry or panic or fear or concern or nervousness. Maybe a bit of everything. I am not worried when I go to the appointment or when I am waiting for the results. It is not that I am unaware something could be wrong, but if it is then it is. Simply put, I have no control over what shows up on those scans so I do not worry about it. Yes, I am weird!

I have been questioned about if I really feel this way or if I am in denial of my fears or depression. The fact is, I am really not worried. I actually try to focus on the fact that scans are good because if something is found then I will know and be able to make choices. Basically, if the scan shows something then I will deal with it and if it shows nothing then yahoo!

If I had to put a feeling towards my outlook on scans, testing, results then it would be hopeful... just hopeful that I am unremarkable and without cancer. The doctor was also calm. He had the nurses go and see if a report had been printed since I had the scan a week ago. Of course it had... and today I was lucky and heard that there was no evidence of disease (NED). Still no sign of cancer! Today I get to say "Yahoo!"


With the knowledge that I was showing no signs of cancer, we then focused our discussion of my continued list of side effects. I had some new ones that emerged since I saw him last. As normal, they do not want to admit any of the problems are due to chemotherapy, radiation, or hormone therapy. Seriously... that just seems crazy to me!

With so many nervous system problems he wants me to have a brain MRI and to see a Neurologist. Another doctor? I am collecting doctors. I thought I was done for the month. Argh! I think he just wants to pass me off to someone else and hope they will shut me up. I will continue to complain about my problems and advocate for my health... if I don't who will?!?!


Since all the computers were still down I left without being able to get my blood work results or schedule my Neurology & Oncology appointments. I figure if something is wrong they would probably call me. So, I was out of there. I was ready to get home because I had spent another long day at the cancer center. And I still have more doctors & a scan to go... I can't stop!!!


Friday... Family Doctor!

I am learning there are all types of doctors. Most doctors just want to deal with issues in their field. The Oncologist only wants to get rid of cancer. Forget whatever comes from those treatments. The Radiation Oncologist only wants to manage the radiated area. Hoping that the Oncologist will deal with whatever comes from those treatments. The ENT - only about my hearing. The Cardiologist - only about my heart. And so on... and so on...


My Family Doctor has really been the only one so far that is attempting to help me. He has always listened to my symptoms wanting to help me figure out ways to actually feel better. Today was no different. He had recently increased my Lyrica and wanted to do it again. However, after learning I was going to get a MRI and see a Neurologist he decided to not alter any medications until after I talk to them.


Down another appointment...


Instead of being able to do anything additional to help the pain I have to wait. He wants to see me back in January so we can regroup and discuss whatever they find out. At least he is listening!

This was suppose to be my last doctor's appointment of the month, but now I was still going to have to get a MRI & Neuro appointment. It seems... I can't stop!!!


In my head...


I guess I should be happy that after multiple months of complaining the Oncologist is at least sending me to a different doctor to hopefully alleviate the problems I am having. I am still surprised at how little accountability is given to cancer treatment for the conditions and problems it leaves you with. While I know I am not necessarily the "norm", I am not the only one who is complaining about the lingering affects of cancer... aftermath of cancer is bigger than they want to believe.

While I am not a doctor, chemo & radiation can cause serious long term issues. There is a lack of acknowledgement in Oncology that symptoms & complaints after treatment were caused by treatment. I have been complaining about this a lot recently... I am obviously and now proven statistically not alone... click here

I could find so many articles and go on as I really feel there needs to be some form of care (medical coordination, doctor specialty, or case manager) for the the post affects of cancer treatment. Instead of having a bunch of doctors pass you between them doing nothing - have a doctor who actually addresses the issues & helps find solutions for what the treatments caused.

Here I go... ranting and raving! I will now put up the soap box and mentally preparing to deal with more doctors and more tests. Like I said... I can't stop!!!


"One of the things I learned the hard way was that it doesn't pay to get discouraged. 
Keeping busy and making optimism a way of life can restore your faith in yourself."
- Lucille Ball


Episode Reference: Can't Stop, Red Hot Chili Peppers song

Comments

  1. NED!!! That's fantastic! I am so happy for you! That is the best news ever! I know you must be ecstatic. I'm hoping I can hear those words sometime in my near future. Wishing you the very best as you continue to take care of those nasty side effects. Cancer truly is the gift that keeps on giving, isn't it? Celebrate your good news! You deserve it!

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