I want to start this little story with a reiteration of something important. I remain convinced that I have received the best possible medical care for my cancer, and I am always going to be grateful to the doctors and nurses who treated and cared for me. I've said many times that I would never have wanted to trade the care I received here for the kind I know I would have received in England or Canada.
Italian doctors, particularly at a Catholic hospital, actually seem to engage their souls in what they do, they like people and are genuinely distressed when a patient is ill and frightened. I believe that this Christian humanistic ethic is vastly superior to the utilitarian ethic that has taken over in Anglo countries leaving doctors coolly indifferent and nurses outright brutal and callous.
I'll always consider it an act of Divine Providence that I was here when I was diagnosed and that I didn't have to go back to the Cold Countries.
Italian hospital administration, however, I would not wish on my worst enemy.
After my surgery at the end of December, I was told very forcefully that I was not necessarily out of danger. I absolutely had to have a follow-up appointment with the doctors to check that there was no more cancer, and that these appointments would have to continue every month for a year, then every other month for two more years. It was crucial to continue to monitor me closely to make sure the cancer is all gone. Recurrence is terrifying and can spread into vital organs in a matter of weeks or even days.
Recurrence = death in nearly 95 per cent of cases.
I was told that I had to get my first follow-up appointment secured by the end of January. And, fatally, I was given a phone number to call.
Now, why didn't anyone just arrange the first appointment while I was still in the hospital? Or just set it up and call me and tell me when to come back? For some reason, they think it's a good idea to make the patient make these arrangements after being discharged. This despite the fact that a patient after a total hysterectomy can't arrange a glass of water.
So, a month came and went and all our efforts to raise anyone in the oncology office were in vain. This has been the standard thing all along. They don't answer the phone in the oncology office. They JUST DON'T ANSWER THE PHONE. I told the lead doctor about this problem so she gave me her cell phone number and told me to call if there were problems.
And I called.
And I got friends to try to call.
And they called.
No answer. Voice mail messages not returned. Busy signal for six or seven hours straight.
About the middle of February, I finally called the doctor and told her that I had had no luck raising a human being at the oncology office and that the time had long since passed when I was supposed to have had my first appointment. She said that C________, the follow-up appointment secretary had told her that she had tried to call me "several times" but had got no answer. I said that this was unlikely because I had grown so paranoid about missing the call that I was carrying the phone around with me in my pocket and sleeping with it under my pillow, and had tucked it into my bra when I didn't have any pockets. I had also received no "missed call" or SMS messages.
Dr. _____ said she would call C_______ right away and get back to me. A few minutes later, the long-suspected-of-non-existence C_________ called and gave me an appointment for February 29th. Two pm.
I was annoyed that this meant that two months to the day had been allowed to pass without this important follow-up, but let it pass, relieved to have the business over. I had a list of things I wanted to bring up with the oncologist: tired all the time, possible surgical damage to my left leg that is making it hard to walk... stuff like that...
So, yesterday, I took the day off work and bundled my perpetually tired self onto the train and went into the City, to the Gemelli and was in the appointed place at the appointed time.
No one was there.
I banged on doors at the end of the long empty corridor. A woman peeked out through some blinds behind a window, and flicked the switch on the microphone and said in Italian, that the office was closed for the day. No they had never heard of Dr. _____.
With growing unease, I went down to the oncology office to find out what was going on. When I got there, I found Valentina, the regular secretary, about whom the less I say the better after a year of ... encounters... and another doctor, neither of whom spoke any English. Mustering up as much Italian as I could, I explained that I had an appointment with Dr. _______ but no one seemed to know anything on the 7th floor. C_______ was at lunch, they said, could I please wait. I said I would but could someone please call Dr. ______. I had tried several times but the number just went straight to voicemail.
I stood in the corridor. [Don't leave... don't leave... don't leave...] Eventually I wandered back into the office and stood there just to make them as uncomfortable as possible.
About 15 minutes later, C________ came back from pranzo and looked at me in shock. What was I doing here?
I have an appointment.
But your appointment was last week, Friday at ten am.
No, [teeth starting to grind involuntarily] you told me to show up today, February 29th at two pm.
[Eyes wide] But Dr._______ never takes appointments after noon.
This is when you told me to show up. February. 29th. at. two. pm. That's all I know. No wait, I also know that I am now a month overdue for my first follow-up.
But Dr. _______ said she sent you a message. You were supposed to get a message confirming your appointment.
Niente. Nothing. Nada. Nowt. I had received no messages from anyone. When you called and told me when the appointment was, that was when I was coming. [Grinding getting louder] That is how this works. You tell me the time for the appointment, and I show up at that time.
This went on for a while, with me getting increasingly furious.
"Aspetta. Cinque minuti."
The phone on the desk started ringing forlornly. No one answered it while a little flurry of papers were consulted. I wondered how many other people were trying to get first follow-up appointments while the phone continued ringing futilely. I looked over at the end of the counter I was leaning on, and noticed that the large and very ugly pot of dried flowers, painted purple, were visibly shuddering in time with my heart beat.
C________ approached again looking worried.
Dr. ______ can't come today. She told me that she had sent you a message giving the other time. Last Friday.
I never received any message from anyone. I have to have a follow-up appointment every month. I'm very, VERY angry.
It has now been two months since my surgery and I have not seen a doctor once in that time.
I went on to explain in detail how difficult it is to make an appointment when the appointment secretary never, EVER answers the phone.
Is there some other pressing work that needs to be done that means you can never answer phone calls from patients? You ARE the appointment secretary for follow-up appointments, aren't you?
C_______ starting to look more and more worried as my face flushed bright scarlet, sweat ran down my forehead and my breathing started coming through my teeth. Was it my imagination that the rest of the room was starting to shudder in time with my heart beat?
I drew a deep breath,
OK, this is obviously pointless. Let's just make another appointment as soon as possible.
Well, the next available appointment isn't until September.
C_______ jumped as my voice rose to a window-shattering pitch.
In an instant, it all flashed through my mind...all the months of waiting for this office to return my calls, answer the phone, to tell me anything at all about my condition, my prognosis, their obfuscation when I asked for consultation appointments, for medical records to be sent to my GP. The three months I spent thinking that the whole business was going to be taken care of with one surgery, no chemo, no hysterectomy, the information that had turned out to be a lie. The memory of the 17 hours I spent in the hospital with no food or water before they told me they were going to cut out my uterus. The three cycles of chemotherapy after which I was sent home to recover alone with no medical assistance or oversight, no support. The terror of the day when I tried to walk and my legs gave out, when I woke up at one am screaming in pain from neuropathy because they had only prescribed tylenol for neural damage...
All the months of fear and pain, the nights thrashing in agony, all of which could have been greatly alleviated had I simply been able to reach a doctor on the phone. A year of not having my calls answered. A year of not being able to ask a doctor a question. A year of having to look things up on the internet and make guesses. A year of terror.
I am happy to say that I left before I started screaming like a lunatic. No oncology secretary was harmed that day.
I walked through the hospital, garnering stares, to the train station. At the platform I called my GP and told him what had happened. That they told me I would not be able to see any doctor until September. He was horrified. I said I needed to see someone else, at some other hospital. I needed a referral and I had to get the Gemelli to sent my medical records to him.
He gave me the name of another oncologist at Civitavecchia hospital and with the help of friends, I have an appointment with him tomorrow morning for a follow-up. Other friends, who are used to dealing with the Gemelli, are going to arrange for my medical records to be forwarded.
I will be getting in touch with a lawyer to discuss how to lodge a formal complaint.
As of this evening, Dr. ________'s phone continues to switch directly to voice mail.
So, I thought I would let y'all know what has been going on lately. And why I am putting the paypal button back on the side bar for a while.
I have to see a whole new set of doctors and it is likely that the best way to deal with a lot of this will be to work through the private system. My health coverage has expired and I have got both the money and the correct paperwork to renew it, so that's not a problem. But it expired the day after I was discharged from the hospital after surgery, so I have not been able to get myself to the office in Civitavecchia to file the papers. This means that all the doctors I have seen (except for Dr. G______ the local GP) have had to be paid, and I have shot through 250 Euros in follow-up blood tests.
To deal with other post-operative repercussions, I will have to have a mammogram at a private diagnostic clinic and more scans and blood tests for which, even with full public coverage, there will be user fees. And I'm broke. At least, I'm not so broke that I can't keep the rent and bills up, but the gynecologist is private and I will be having a succession of ultra sounds and consultations which are going to run me into some hundreds of Euros. [So much for my microscope...sigh]
Though I am embarrassed to ask, I would certainly appreciate some help defraying these medical expenses. It seems likely that I will have to be doing a good deal of this in the private system. We are past the point where the treatments will cost in the thousands and tens of thousands, but the hundreds are still more than I can manage easily.
Thanks in advance.
All squared away at Civitavecchia Ospedale San Paolo. Tests and appointments all booked, medical records being sent on. The oncology department is tiny, probably no more than three doctors and as many nurses, one of which answers the phone and books appointments straight away. I brought all the paperwork I had giving the whole medical history.
Dr. M____ is a perfectly nice fellow and speaks about as much English as I speak Italian, so we more or less matched in the middle and managed to communicate pretty well. He read all my stuff over and called one of my Gemelli doctors he knew. Turns out that no one is worried about me medically, they are very confident at Gemelli that the cancer is finito. It seems the pain, and now lump, in my leg is just an inflamed lymph node, which is a normal outcome from this kind of surgery. I'm getting it ultra-sounded, however, just in case there is something else wrong, but no one thinks so.
So, all follow-ups, scans and tests are booked. The nurse actually took me down to radiologica to make sure I got all the pieces of paper stamped by the right people, then wrote my appointment times in her book and gave me a photocopy.
So, there we are. Moving on...