Lymphedema Book

From the Lymphedema Clinic where he is now, Clive has just written a short book about lymphedema, and what it’s like to suffer from it. It ain’t fun; I can vouch for that.

He’s published it as a Kindle book on Amazon.

The cover shows his jeans-clad leg when he was 21, contrasted with his leg as it is now.

Lymphedema - Living with the disease

The lymphedema treatment gets under way

Clive has sent me a photo of his room, taken by the video camera on his laptop.

Clive's room in the Lymphedema Clinic

It is small, and a bit gloomy, but not as bad as it looks. Its great saving grace is its balcony, accessed by a full height glass door.

Another good thing about it is that he can store his Tyros II keyboard upright in one of the two wardrobes: it could have been purpose made for it.

He’s settling in and making friends. Unfortunately the timetabling is a bit haphazard: he has to be 2 places at once from 11:00 to 11:30, and somewhere else again at 11:15 … But they do seem to take treatment seriously, which is of course the main thing.

Lymphedema part 2

Continuing our quest for treatment for Clive’s severe lymphedema problem, I spoke to the horse’s mouth of the E112 rejection – a Professor in Perugia Hospital.

This professor promised to speak to the female doctor in Terni whom he had recommended. He phoned us back and reported that she would do her best to bring forward the appointment from the end of April. We should phone her again.

I finally got hold of the female doctor. I gave her some more details about Clive and she decided that it would not be right to ’make him come and go’ as an outpatient.

She referred me to her esteemed colleague in Rome who has some beds at his disposal.

I eventually reached this doctor today. He will examine Clive as an outpatient initially. We should make an appointment – he gave me a phone number – to see him in a few days’ time.

I phoned the number he’d given me. An outgoing message announced there would be a wait of approximately 16 minutes. Meantime the speaking never ceased. An Italian, an English and a French voice took it in turns to tell me they were trying to deal with my call, and every time round there was a noise as if I was going through so that I was continually leaping for the microphone. (I made the call via Skype; I would have gone insane if this had been on the mobile.)

Clive's lower leg

Finally a woman answered.

Name? Is that a surname? Can you spell it? (The initial letters of Italian cities are used for spelling out words.) First name? Is that a first name? Can you spell it? Date of birth? Place of birth? Fiscal code? That can’t be right. There are more names. Why didn’t you tell me there were more names??!! We’ll have to start all over again. Second first-name? Can you spell it? Third first-name? Can you spell it? Date of birth? Place of birth? Fiscal code?

There were 2 or 3 repetitions to check the whole fiscal code, and some confusion as to whether I was the wife or the husband, or whether I was phoning on behalf of my wife or my husband (she got quite ratty at this point although my voice is clearly female).

At long last the offer of a date  – a month hence. We had to put it off a week more because the timing on the earlier day would have meant we got back from Rome well into the night.

The photo, which is of a ruptured lymphedema ulcer on the back of Clive’s lower leg, shows that time is not on our side.

No flying pigs today

What we didn't see

Have you seen one of these? We sure haven’t.

Needless to say, the family doctor we went to see proved to be a complete lemon, despite glowing recommendations about how he bends over backwards to help visiting Albanians who can’t join the National Health System.

Just as we entered his consultation room, all the lights went out – an omen of things to come. He fussed around grumbling till they went on again. I guess he was around 70, and he looked as if he’d been dug out of his grave.

In words and body language he communicated his complete refusal to help us.

Being foreign, we didn’t have any documentation at all, did we? He didn’t seem impressed that we were able to produce several years’ worth, but he perused it and muttered that Clive needed continuous treatment for his lymphedema.

He knew, just like that, that Clive was mistaken in what he believed to be the cause of his lymphedema – quite a feat, to know that.

He couldn’t POSSIBLY try to gainsay one of his esteemed colleagues even though this colleague had never met Clive, knew nothing about the gravity of his case (there’s no room on the form), and didn’t know about waiting times for his proposed solution nor what that solution consisted of.

He couldn’t offer 360 degree help to us in the role of ‘tutor’ since this would mean him working a 24-hour day and not having time for other patients.

 We bowed out as gracefully as we could.

Another brick wall

More happy bashing

Today I phoned the female doctor in Terni who does lymphedema treatment.

Speaking brightly, she booked us in for next Friday and then described the clinic’s location.

We looked on Google Maps. When the photos were taken, there wasn’t a single parking space on the one-way streets near the clinic. There is, however, a little car park right next to it.

I phoned back. Unfortunately they aren’t allowed to use the car park, but if I phone ahead (while driving) and hover outside the clinic, someone will come down and escort Clive up in the lift while I go to look for a metered space.

It suddenly hit me that we’d booked a private appointment rather than a National Health one, so I phoned a 3rd time. Still the bright voice, but as soon as I told her the situation, we went from ‘red carpet’ to ‘wipe your feet before you come in’, as Clive put it.

I phoned Terni National Health. We must book through a Pharmacy and no, they have no idea when the first appointment is.

I phoned Valtopina Pharmacy. They can’t make the appointment because, although our chit says ‘lymphedema treatment’, it has the wrong department name on it. (I’d heard ‘angiology’ as ‘oncology’ and since that didn’t make sense, our doctor had insisted on putting ‘phlebology’.)

In fact the Pharmacy weren’t sure they could make the appointment at all, seeing as it was Terni, but if I went in they would see.

The Pharmacy eventually found Terni National Health on their computer and checked the next available date for me: 26th April.

Back at home I phoned the doctor in Foligno hospital who had ratified and supposedly supported Clive’s application for intensive treatment in Germany, hoping for some advice. He couldn’t disown us fast enough.

I phoned the administrator in Perugia who had communicated  the rejection of Clive’s application for the E112. He advised an appeal on the basis of waiting-time.

We’re now pursuing a possible change of family doctor as it’s imperative that we have proper advice and backing from someone who is supportive.

“And another one just flew over,” says Clive.