Monday, October 23, 2023

The Big Question

Tim's surgery is at the end of the week.  It's been such a far away dread for such a very long time, but now, it is upon us. 

We've got plenty to keep us busy this week. Tim is still archery hunting, hoping for just one more deer. 

We've got eye appointments. 

Today, I'm getting a haircut. I will get it cut shorter than usual, in case I can't get back for a while. 

This is uncharted territory, really, and we don't know exactly what we are dealing with yet. The big question is whether or not it has spread. 

I will tell you the thing that haunts me in the middle of the night. When Tim had his stroke earlier in the year, a brain scan was done. The doctor said, "I did not expect to see this. Usually, when a patient has a stroke, the lesions appear on one side of the brain or the other. It affects one side of the brain. He has the lesions on both sides of his brain, tiny white spots everywhere."

My questions are pretty straight forward. Do cancer and stroke damage 'present' differently? Are there differences between the two, or did he interpret the white spots as stroke damage because that is what he was looking for? 

I think they are sensible questions. If the cancer has spread, I'd think that the medical team would want to know. If the two things look completely different in a scan, my god. There would be one woman sleeping a little better at night. When I asked Tim's family doctor the question last week, she listened and then said that she could not just pull up the diagnostic tests of another doctor and question them. I had to take my question to the neurology department that originally ordered the testing.

So I did. 

After four days with no response, I called the family doctors office and spoke with the nurse. She looked in the records and said, "Oh yes. Here it is. They noted you'd called, but could not understand what you wanted."

Yet they could not be bothered to return a phone call to find out. 

It's the little things like that make me crazy. 

29 comments:

  1. Well, you will soon know for sure. I hope that things tur out the right way.

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  2. So they just left you hanging... unreal. At least you're trying to keep on top of things, and not just hoping for the best.

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  3. Having been dealing with Medical folk this weekend and today, some are more switched on than others! I am praying you get the information you need and it sets your mind at rest Debby and thank you, despite all your troubles, for still having the time and compassion to reach out to me when life has been so difficult here.

    I am sure that the operation will go smoothly and Tim soon home and mending.

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  4. Sounds like your family doctor didn't know the answer Debby.

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    1. Medicine is so very specialized over here, Dave. His family doctor does not have access to the scans. They are with the doctor who ordered the scan. The family doctor thinks that if we can't get answers, the tests should be redone. It seems like such a waste of money to repeat a test because the specialist is too fucking important to waste his time answering questions. Excuse my french, but really, this is nonsense.

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    2. You and the family doctor certainly should have the scan results.
      1. It is your body
      2. Your own doctor has to deal with you and them. Not a happy piggy in the middle situation. But needs to know them to be forewarned of anything that might turn up

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  5. Well, I could see why you have questions -- and why you'd be dissatisfied with that response! Sheesh.

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  6. That is pretty cr@p patient care. Do they have no empathy at all??

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  7. Just reading this overwhelms me with anxiety. All of us find ourselves in these situations. Of course doctors are busy and don't always get back to us but it's patient CARE. Well, it's supposed to be. I would be furious if I were you.
    We will all be thinking of you and of Tim and we will all be hoping for a great outcome.

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  8. The PET scan Tim had two months ago would have shown any spread of the cancer (at that moment), I believe. PET scans provide information that MRI and CT scans don't. Hopefully, Tim would have been notified with any concerns. You'll know by now how important it is to go into any meeting with a doctor/surgeon fully prepared, with plenty of reading done ahead of time and all questions/concerns written down. Don't waste a minute on chitchat and pleasantries. And take plenty of notes about the responses to your questions. Being an aggressive (but not in an ugly way) advocate for your husband sends a message. Best wishes to you both, Debby. Anne in Maryland

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  9. My week is focused on my teeth. Dental care twice, one a consult, one a cleaning. At two different offices. Sharing information? Right. Same stuff. I'll carry a print out with me of the plan to the next person in line. I'll certainly be wishing that Tim has a easy surgery without any spreading...and his recovery will be smooth sailing. Glad he's out there in the woods dealing with his own anxieties!

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  10. The good news is that prostate cancer rarely spreads to the brain, it prefers bones and lymph nodes. Brain mets and strokes look different on a scan. Can you request copies of the scans, they can be burned onto a CD which can be taken to another doctor? However, the radiologist report is the most important because they are the specialists at looking at and interpreting results. Can you get a copy of the radiologist report?
    Has Tim had a CT scan and a bone scan yet? Those are the best tests for looking for mets. Or are those scheduled for post surgery? I just read in a comment that Tom had a PET scan two months ago which is good.

    I hope everything goes well for Tim and you both. Sending hugs.

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  11. Pixie's comment got me thinking about something else--the need to keep meticulous records. Use a binder with dividers to organize everything--prescriptions, test results, radiology reports, discharge instructions, doctors' contact info., your own notes, etc. Request paper copies of everything and don't leave appointments without them. If you already do this, just ignore me. I'm reaching back a few years, when I was in your position, and trying to remember what was helpful. Anne (again)

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  12. The front office folks of the neurologist office should have returned your call to clarify your questions/concerns. Noting that they couldn't understand your request and then not touching base with YOU is uncalled for, and poor management practice.
    Pixie & Anne have made some excellent points concerning getting copies of reports & tests from medical providers... thanks ladies!
    Thinking of you & Tim, Debby.

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  13. I feel for you. We are also waiting on the result of Sue's lab test. Does she still have c. diff or not? If not, what is her problem.

    Keep us in the loop, eh.

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  14. I really feel for you. I will continue to send positive thoughts through this coming weekend and perhaps beyond.

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  15. Good luck to you both. I have MRI brain scans at 3 monthly intervals to look for changes. They were able to gene sequence the original tumour and prescribe a targeted therapy medication which so far has shrunk the mets and kept further problems at bay. There are some incredible treatments now, no matter how good or bad thinks seem.

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  16. Thinking of you both at this time. Gigi

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  17. A neurologist who has seen lots of stroke patients should be able to tell the difference between damages from mets and vascular episodes

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  18. On the off chance that you haven’t already been doing this, be persistent. They didn’t call back, but maybe this just slipped somebody’s best intentions? It shouldn’t, but crap happens…

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  19. I will be sending positive thoughts to you and Tim, Debby. Hope it goes well and you get the best results. Take care and hang in there.

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  20. Thanks everyone. I am just probably worrying about nothing, but it sure would be nice to hear a doctor say that they can see the difference right away.

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  21. You will be on my mind this week, Debbie. All will be well.

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  22. I’m in MN and I haven’t traveled this road personally. In some medical systems you can request a Hospitalist. That person is also an MD and works to connect and direct the process of care. I’m hoping you would have that opportunity so you aren’t chasing for answers and direction. Cheering you on and of course, prayers for everyone in the circle of care. Bonnie in Minneapolis

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  23. Keep that notepad ready with your questions and the doc's answers. Anytime I get an x-ray or MRI, I ask during and at the end for a copy of it, which is on CD form, AND I ask for the radiologist's copy of the report after he reads it, which is usually in 1-2 days. Instead of trusting the staff or post office to mail it, I've been close enough to go back to the x-ray place and pick up the radiologist's report. Even though it has medical lingo in it, at least I have the copies myself and can give additional copies to another doc. You can do the same with the surgery report, but you just have to keep asking. Ironically, the records belong to the hospital / facility, not you. The surgery office should have sent/given you pre-surgery instructions, like when to not eat food or drink fluids, and what meds to take or not take. Call them if you haven't received it. Sounds like good surgery docs to take care of the problem and get you two home soon! Linda in Kansas

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    1. That is such good advice. I knew it once and forgot.

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