At last -- the end of my radiation treatment ! What a relief :-) Yes, there will be a lifetime of chemo... but I can swallow pills at home. And, well, it's just a relief to have reached the end of one stage of my treatment.
There's a final meeting with Doc Harper at Genesis. Yes, I'm well, I even feel that I'm improving... now that radiation has stopped and chemo is on hold.
And Doc Harper says, Get an MRI scan and we'll meet again on the 22nd.
What?!
I've finished radiation. Genesis provides a radiation service. Doc Harper is a radiation oncologist. What does any of that have to do with a lifetime of *chemo* ?!
I'm sort of stunned.
An hour later I'm angry: what the hell are these people playing at? I count to ten. I'm rehearsing sarcastic comments. I count to 1000. What about Doc Tsoi? Is she involved? Is she expecting to tell me when to get an MRI? Not as far as she has said so far. What the hell sort of medical "team" are they? I sleep on it.
I think that I'm almost ready to send a semi-polite email to Tsoi. Trying to get her to act as though she really is the doctor who will be "prescribing and monitoring lifelong chemotherapy" ... as I was told she is. And asking questions such as, If I've finished radiation -- as Tsoi has clearly told me -- then why is Genesis still involved?!
Here are some of the questions which really need answers. Answers that I can understand:
== Have I really finished with radiation treatment?
== If so -- why does Harper/Genesis want to continue meeting with me?
== How many doctors need a referral? Last several times I asked -- no-one could give a definite answer.
== What is an "indefinite" referral? Harper mentioned it, it sounds like a referral which will last... indefinitely. Perfect for a lifetime of specialist care. So why has Tsoi never suggested it?
== I know that Tsoi wants a "baseline" MRI scan. When?
== Harper wants an MRI scan. Will it be good enough for Tsoi? Or will I need *two* scans?
== Lam wants an MRI scan. No idea when. Will that be a third scan or will one of the other two scan the required area (or whatever)?
== I had an MRI scan in ED. Is that no good to anyone?
== Harper mentioned a PET scan, for the gut (ie spreading testicular) cancer. Will Tsoi want one? Another one? When? Will the urologist be involved?
== There are two symptoms or side-effects which have lasted through most of my treatment: fatigue and pins & needles on the soles of my feet. The fatigue came late, it was expected, I mention it, accept it.
== The pins & needles has been there longer, it was the first and only symptom -- or side-effect -- that I have had since the very beginning. I still have it. So I mention it to each doctor.
== I mention "pins & needles". I mention "peripheral neuropathy". Each doctor simply ignores what I say.
== Not quite correct. The urologist actually listened. And responded! Could be a pinched nerve, she said. Which makes sense of the slight numbness in my groin, where she operated. Thank you!
== So what about the soles of my feet?! That started well before any operation on my groin. It continues into the current break in treatment. It must be outside the range of the doctors' tick-box treatment. They don't give a damn.
=== So I read the information on the patient information website of the American Society of Clinical Oncology, 40,000 American oncologists can't all be wrong. I read Wikipedia, the information is much the same but more technical. Trouble is, those two sites offer general information. I would like something that is specific to me, to the exact treatment that I have been given.
== Too bad. "My" doctors are not interested.
===
Okay, a couple of days and I am still disgusted but I manage what I hope is a polite email to the doctor who is supposedly managing my future -- lifelong -- cancer treatment. She has clearly told me that there is no more radiation in my future treatment. So all I ask is, Why then does the *radiation* treatment centre want to maintain an indefinite relationship with me?
If I can get a clear answer to that -- I may try asking some other questions.
===
Here's another side to the problem:
I know nothing about medicine. Therefore I am perfectly happy to put my trust in medical experts. I have no doubt at all that every doctor on my "team" is an expert. For the past few months I have -- with absolute confidence -- trusted my life to a series of medical experts.
My wife & son understand more about medicine. They are able -- and willing -- to answer my medical questions. They answer in terms which I can understand.
Only trouble is... as I am now realising... if I don't know to ask then I will not get an answer. The experts are very sparing with their explanations. I don't realise that key details are not being given. And I don't know enough to ask.
Now it gets worse: we are moving from the absolute essentials of medical treatment to the "process" of medical management. That is, there is plenty to be done but the challenge is to coordinate rather than to follow a fixed treatment schedule. This is stuff that I understand. This is stuff that I have worked with for years. And I can recognise crap coordination when I see it.
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Meanwhile -- to end on a positive note :-) -- we have a great day looking after our grandson. Sure, I have a cold but I won't pass it on because I caught it from the grandson. Can't be much of a cold... it barely slows down the toddler...
And the rest of the week... is mostly good :-)
==== Dr Nick Lethbridge / Consulting Dexitroboper & Flaneur
Agamedes Consulting / Problems ? Solved
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"Give a man an inch and he'll think he's a ruler" … Agent 86
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Now much more than a clever name for a holiday journal:
Good to end on a positive note. Have been away fourwheel driving. Cheers Col
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