I’m hoping for the best
Fwiw, i think it’s helpful, when talking to doctors, if you can speak their language. They are more likely to talk to you, rather than at you or down to you. There appear to be meaningful choices my husband will need to make once his treatment is started, and it’s also helpful to understand them. So there are also practical reasons for research.
A friend who does taxes for a lot of people tells me that she tells her clients, “always check my work. I am an expert in taxes, but you are an expert in you”. And in fact, the last time i reviewed my mother’s accountant’s work, i found some dumb errors, all having to do with details about her and my dad. I think the same is true of working with doctors.
(The oncologist tells me that initial treatment is standard. So i have some time to study.)
Ahhh…this is brilliant.
I think some doctors think they are the experts in you. And some patients think the doctor always knows best, too-- “Well, I didn’t think that was right but the doctor said…” 
I found my Urologist suggestions for treatment odd and not suited to myself at all. Thankfully I was already semi-informed in conversations here and with my sisters and niece, (All nurses).
The urologist wanted me to go for 45 treatments over months, where the trip each way was an hour. The first part seemed very weird in this day and age and second part seems very bad for my getting through the whole mess. All this was with me asking about MSK (Memorial Sloan Kettering) who has an annex only 11 minutes away and is one of the most respected cancer fighting options in the country.
After going to see a Doctor at MSK, I went with them over the Urologist. I don’t plan to return to the urologist ever, his recommendation left a bad taste in my mouth.
Yeah, I think that’s the right way to think about it.
Yesterday, an endocrinologist came by and said she wanted to give him a drug to lower his blood calcium levels. She said there was a small risk of kidney damage. I asked whether she knew that his kidney function was very low. She said she did. She went on to say that there’s another drug that might work, but it was a lot more expensive, not currently available at this little suburban hospital, (they could order it) and might not be covered by insurance. She concluded by saying she recommended the drug that was available right now. So I said “thanks, no more questions”.
I’m very judgy about doctors. As an actuary, the advice when presenting to the CFO is that “you are the expert on your material, but the CFO is very smart, knows about a lot of things you don’t know about. While you need to be clear about stuff and avoid specialized jargon, if you present well, the CFO will understand everything important, and you need to respect their opinions, and the choices they will make.”
That’s what I want from my doctors. I want them to explain the issues, tell me the processes, the risks, and the choices, and then let me decide what to do. I mean, sometimes it’s “this is what we need to do and here’s why”, and the only choice is “consent to medical care or walk away, and bad things will happen”. But that can usually be conveyed clearly.
The oncologist, the kidney doctor, and the admitting ED doctors all met that standard. The hospitalist and the endocrinologist were okay. But I suppose his care team will change when he transfers to the big hospital.
Yeah, i tend to doomscroll unless I have specific info to look up.
My oncologist is very up to date on research. The second part of my chemo was based on a med combo that had just come out of clinical trials in South Korea that had excellent results.
(Male, 75) I always google my medical conditions, but strictly limit my searches to sources like the Mayo Clinic website. No random internet strangers.
Urologist… bad taste in my mouth
Uhh…
Back to the serious stuff now.
I was fortunate to have an MD sister who helped me through some of the stuff I didn’t have the background to understand.
My care team were excellent from the standpoint of patiently explaining some things to me 3 or 4 times until I really felt I understood them. This is especially important when one is suffering from chemo brain fog.
I did some googling but was very choosy about sources I followed up on, like @TreacherousCretin
Write stuff down!
Also, more best wishes.
Yeah, the Mayo Clinic has decent on-line content. I also tend to read relevant peer-reviewed papers, and some news summaries. I just subscribed to UpToDate, and hope to get some insight from that.
:lol:
Medscape.com is another professional resource. During the height of COVID they offered free subscriptions to the public & that’s when I got mine.
Their website is acting up just now, so I’m not able to verify if use & membership is still free. But IMO definitely worth a look.
Good luck to both you and your husband! I hope the hospital transfer goes well - I dealt with that once with my ex husband and it was tedious and seemed to take forever, very frustrating. And you might want to double-check once you’ve been assigned a nurse that all medications and instructions transferred correctly. I caught an incorrect prescription that was about to be administered on that first night that would have been very damaging for his condition.
Do be sure to take care of yourself. The sick person naturally gets the majority of the fuss, but caregiving is exhausting. Daily life for you isn’t going to stop in the same way it has for him, and it can get overwhelming when you least expect it.
One thing to consider: the appointments can sometimes, for some people, be overwhelming. I’m a professional patient and I still struggle to remember what was said at a given appointment – an hour later … a day later.
Some of it is the sick. Some of it is the stress. Some of it is … the more you speak the language of your specialists, the more comfortable they tend to be in speaking it back with you. Sometimes, this still results in terms or phrases or concepts that are difficult to grasp on the fly.
If you can’t have backup at the appointments – somebody who may be one degree more detached than you – it’s worth thinking about getting the physicians’ okay to actually record the visits.
Excellent point. I was the stenographer at a couple hundred OVs & hospital bedside encounters. I missed a couple for work & a couple for COVID when I wasn’t allowed in the building & we had phone problems. But I was there for the rest.
In addition to helping w memory, there were a number of occasions where it became apparent to me that caregiver & patient were talking past one another to no good result. It was valuable that I was there to recenter the convo & let them start afresh.
I took notes at all my mom’s appointments, and when my sister thought she had cancer. I’ve had medical professionals say flattering things about the quality of my notes. That’s one of the few aspects of all this I’m fairly confident about. 
I agree that recording is valuable. My memory sucks.
It’s weird the new sets of skills you acquire along this path that nobody wants to traverse… 
Puzzlegal, I am so sorry I am just seeing this. I am sending positive thoughts and hugs to you and your husband.
He was transferred to the big hospital last night, and he’s in the cancer center. Both the attending physician and the resident have been by a couple of times, and discussed his treatment. Of course, they won’t know for sure until the biopsies come back. (One of the tumor on his spine, and another of his marrow.) I watched them take the marrow samples, which was kind of interesting. But they plan to start him with the current standard of care, which is four drugs. He says he’s now toxic, and came with instructions for handling his bodily fluids. (So long as he doesn’t, um, leak, it’s mostly, “flush twice, and wash the seat of you leave anything on it”)
They think he should be able to handle most of his regular chores of daily life, and also, to go back to work if he feels up to it. (He works from home.) They okayed his upcoming dental work with prophylactic antibiotics, and also his planned physical therapy (for other issues). They said that walking around is good for him, so long as he doesn’t over do it, and they’d like him to stay active.
After 4-8 weeks of initial treatment, they will discuss options with him of what to do next. But they aim to achieve remission from chemo before more aggressive treatments, which might be an autologous bone marrow transplant or immunotherapy.