Or more like “Operation: Info”
Honestly, I’m always the last to know. I really thought yesterday’s appointment was to get the pre-op tests done for my upcoming liver surgery. Turns out it wasn’t that at all. Nor was I the only confused person…
After a lovely bike ride through the park to the hospital things started to go downhill. Well, they would, wouldn’t they? But I mean, even more than you’d expect. First of all ‘La J’ and I waited an hour and a half, watching people who’d arrived after us going in for their appointments, before a nurse came out and informed some of us that they were still waiting to receive our medical histories from the Oncology Dept. WTF? At this point I didn’t reckon I was about to lose my place in line any more than I already had and, since nobody could say when the histories would be arriving, we decided to go to the cafeteria for brekky. Also, I had to take my chemo pills by 11 o’clock and had to eat something first.
When we got back someone said they’d been calling me, so I let the nurse know I was there and I got in next. No tests. This was all just about talking to the surgeon (no Pipocas, not Dr Dirk) about my operation and to have him explain the possible risks to me. These included, as far as I can recall: internal bleeding, infection, pneumonia, fistulas, thrombosis and death. I was also told that I would end up with another massive incision, but this time in the shape of a horizontal J under my right ribs. Oh, and apparently it is a very serious operation that will require between 6-8 weeks of recuperation afterwards. As for my 45-50% recurrence odds, the surgeon told me that ten years ago it would have been 100% for someone in my situation. I’m not sure if this was supposed to make me feel better (it didn’t) other than to be grateful it wasn’t 1998.
But most importantly I found out that the operation will be in September.
This now gives me some sort of framework to work with. Which really helps. And so, if the op is scheduled for mid-September (I hope so – I really don’t want it to happen during Sara & Steve’s visit!) I will have had three chemo treatments by then. Again, something to prepare myself for. Which leaves me 6-8 weeks to make sure I am in the best physical and mental health possible.
Precuperation?
casa azahar 
Ho Ho. Welcome to ‘Carry on Cancer’ as I liked to call it. All my appointments just kind of happened. I contemplated doing a PhD entitled ‘space, time, and the NHS’. on the back of it.
Now you have a timetable. That’s great. Even if it does happen during our visit, then, well, you’ll have possibly the most innapropriate visitors EVER..lol.
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A timetable is damn useful. And yeah, the medical team can give you the impression you’re the LEAST important person on the team, but my experience is that when you make them aware of you, they are very accommodating and respectful. It does take you getting in their face first, though.
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‘Carry on Cancer’ sounds about right. Yesterday we even saw Retro Nurse, complete with starched white uniform and white stockings. She was pretty scary, actually.
Usually Pipocas comes with me to my consultations (we tell everyone she’s my sister) and we make a rather formidable in-your-face info-gathering team. It really helps having someone else there, especially as I am bound to forget to ask about something or other. But yesterday she was away on holiday, selfish cow. 😉
The other thing is that I have tag-team oncologists. The last two times I got Yolanda (who I really like) but there are six of them handling my case and it just depends on who is on duty at the time. Is this normal? I think it really sucks in terms of building a good relationship with one’s doctor.
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Completely normal. I even learned to not turn a hair when they switched in the *middle* of appointments. But as I think all doctors are morons from the planet dork anyway, not much of a relationship to harm. Except my oncology team. I grudgingly accept that they’re perhaps quite nice. And my surgeon, the International Man of Mystery. Quite the most good looking man I have *ever* seen (close your ears now, blues – although nothing you don’t know already). It’s a shame I was wearing a teddy bear dressing gown and DVT socks every time he saw me. Not my finest hour.
I’m also not entirely sure I’d want to do anything with my gynaecologist anyway. Not after he’s seen *everything*. Nice eye candy though. Made the food almost worth it.
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Yes, that’s normal. I had a rotating team of nine nurses and it was SUCH a relief when I got the catheter in and knew that #4 wouldn’t be carving up my arm again, digging round for a vein.
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Doctors and hospitals… I’ve had my fill of both. Your most recent experience brings back many unpleasant memories. At least you now have a timetable, Az. That, itself, is very helpful, I know.
xoxo
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oh! so sorry to hear it’s going to be another MAJOR operation, we were all hoping it wouldn’t be. glad J was there with you.
not quite understanding how fistula could be a complication of that particular operation, need to go check my medical books again.
keep your chin up, Nog will be home soon!
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You should have seen my surgeon, Sara. Looked like a 70’s soap opera star. Hence Pipocas nicknamed him Dr Dirk and not-so-secretly lusted after him.
Yeah, I’d expect the nurses to rotate, Rain, but it would be nice to talk to the same doctor each time.
You shouldn’t be surprised, nursemyra. I told everyone at the ‘post prognosis lunch’ that they were going to operate on my liver to remove the two tumours the PET scan found. Not sure if I used the word ‘major’ or not – is there such a thing as a ‘minor’ liver op? I honestly don’t know.
Can’t be a hundred percent sure he said fistula now … I kind of stopped listening after awhile and tried to pretend he wasn’t actually talking about ME. I’m sure all this stuff is listed on the release form I signed, but I’m going to wait until Pipocas is back and go over it with her.
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Yes, I expect a full debriefing, Missy! I want facts, figures, charts, graphs, and… most importantly… a complete profile of the hot new surgeon.
Seriously, text messaging is just not as fulfilling as sitting for 2 or 3 hours in a waiting room performing an exhaustive breakdown of all the potential scenarios.
I agree there comes a time in all medical appointments where it becomes too much to absorb and the mind tends to wander off the subject at hand. I felt that way when the oncologist doctor #2 was telling you about all the medications… I had a hard time keeping up with that, but you seemed to be attentive and nodding and asking all the right questions, so I tuned out for a while. I did, however, understand that this “consulta” with the liver surgeon was strictly to talk about the upcoming procedure and schedule pre-op tests.
I am just relieved that you seem to be feeling a little better than last week. Now you are changing your own cat sand and everything… woo! Although, I still think you should just drop your garbage off the balcony onto that incense vendor. It’s a whole lot easier than carrying it down four flights of stairs, and maybe Sr. Smell will take a hint and set up shop somewhere else.
Okay, I’m off to google “fistula” now…
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Hi az!
Just returned to cyberspace after my rather long absence.
OK, ca coli cum met hep (as I would normally write) is not the best you can end up with. A lot of things aren’t. What I from a professional view think is important is that the cure never shall be worse than the condition itself.
If you have problem with needles ask for a Port-a-Cath. It’s a little thingy put under the skin on the chest, connected to a major vein, through which meds, fluids etc can be delivered. They can last for years if taken care of.
Take care!
You know where and how to find me.
*hugs*
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Lord, I’m glad you had company for the consult. Maybe, if you have any questions after you go over the form with Pipocas, you can get someone to go over it again. Fistula doesn’t sound to me like a side effect of liver surgery — if I get what that is, I think it’d effect stuff a little lower… 😕
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Can’t wait till you get back, Pipocas. You see? You knew what this last appointment was for. It always feels like too much information to absorb at once, but between the two of us we seem to get most of it.
Well, I had company going to and from the hospital, SC, which was great. But La J didn’t come in with me when I spoke to the surgeon. I definitely noticed the difference not having Pipocas there with me.
*waves to dragonqueen* Long time no see!
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I was referring more to the incision being massive, sorry if that wasn’t clear.
hey, maybe it would help if you took a notebook into appointments with you and jotted down the salient points?
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A notebook! Nah, I’d rather take Pipocas … she makes me laugh in the waiting room. 😉
They always give me a printout of my latest medical report so I’m not sure if I actually need to take notes during the consultation. It would be a good idea for before so I could get all my questions straight, but so far we keep ending up in the waiting room with pens but nothing to write on. Duh.
I’ve been scared shitless about this operation since I got the prognosis (exactly two weeks ago today). I reckon the incision size is actually the least of my worries.
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A patient advocate (which is the role that LaJ seems to be filling for you) is a VERY good thing. Actually, so is the notebook. When you are at home, not stressed and confused, and you think of a question, write it in the notebook. Then when you are at the appointment, you can go down the list of things and tick them off as they are answered. A very good thing, also.
I’ll tell you, the possible side effects of surgery are the most scary thing you’ll ever come across. The physicians, in order to preclude anyone coming back at them and saying “You didn’t tell me this could happen!” list EVERY possible thing that could go wrong, no matter how far fetched it may seem to you, the patient. When Jim went in for the removal of a cyst in the epididymus of his testicle, I went on line to read about the surgery and about had a heart attack when I started reading the “Possible Side Effects of Epididymectomy” patient information form that he was required to sign.
“Risks/Complications:
The risks and complications of the procedure where extensively discussed with the patient. The general risks of this procedure include, but are not limited to bleeding, transfusion, infection, wound infection/dehiscence, pain, scaring of tissues, failure of the procedure, potential injury to other surrounding structures, deep venous thrombosis, pulmonary embolus, myocardial infarction, heart failure, stroke, death or a long-term stay in the Intensive Care Unit (ICU). Additionally, mentioned were the possible serious complications of the anesthesia to include cracked teeth, airway damage, aspiration, pneumonia, spinal head-ache, nerve damage, spinal canal bleeding and malignant hyperthermia. Your anesthesiologist will discuss the risks and complications in more depth separately. Additional procedures may be necessary.
The specific risks of this procedure include, but are not limited to: complete breakdown of the repair, prolonged wound drainage, injury to spermatic vessels, testicle, testicular blood supply and vas deferential artery which may lead to loss of testicle or future infertility problems, if the testis appendix is noted it will be coagulated to prevent future torsion of the structure and persistent or worsening of the pain associated with the area where the epididymis was anatomically removed may occur. The connection between the testes and the vas deferens will be severed and no sperm can proceed to the semen from the side of surgery. ”
Good grief. The part I liked in this list was the “scaring of tissues”, which of course should have been “Scarring”. Anyway, these were the possible side effects of having a cyst the size of a walnut removed from between the testicle and the scrotal sac, not having two malignant tumors removed from the extremely important organ the liver! No wonder you stopped hearing all the no doubt very long list!
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Ugh, that surgery sounds awful. I hate surgery, and I am so sorry you have to go through it.
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