Mixed Müllerian Tumour

As I feared, the second opinion from Lyon confirms that this is a Malignant Mixed Müllerian Tumour (MMMT), type  adenosarcoma.  Rare and aggressive, but fingers crossed, in my case caught relatively soon.

Kind Maelle, my GP, chased up the laboratory in Lyon for me and has, against the rules, sent me a copy of the report.  Most of it is gobbledy gook to me, but the conclusion is stark:

il s’agit d’une tumeur mullérienne mixte à double composant épithélial et conjonctif, à type d’adénosarcome

The good news is that all the scans etc show the tumour is still small.  But even if it is still stage 1, this is such a malignant tumour that the only five-year survival rate I can find (literature is limited) is only 50%.  Hey ho.

Just at the moment I’m trying hard to get rid of the cough I have (endless saga of cough which has come and gone since February).  I don’t care for the idea of coughing when full of stitches.

Still waiting lab results

I am most grateful for what the French health system has done for me, and I hope will continue to.  But sometimes battling with its administration and the highly compartmentalised and individualistic approach of its professionals drives me to despair.

It is now six weeks since I had the D&C in the Ganges Clinic and the biopsy results went to a laboratory in Montpellier, which examined them the next day.  They then diagnosed probable Mullerian cancer of the uterus, but sent the results for a second opinion to a specialist in Lyon – and a copy of their letter to my gynaecologist ook three weeks to reach my GP, Maelle.

Maelle then tried ringing Lyon, only to be told the specialist was on holiday for two weeks, that is, to the end of last week.  I then saw the Ganges gynaecologist, who referred me straight away to the surgeon in Montpellier.  He and his secretary were confident they would have the results by the weekend.

I waited, and waited, and finally rang the Montpellier clinic on Tuesday, only to be told that now it was the surgeon and his secretary on holiday! Since every doctor works as a separate entity, nobody else was in a position to chase up the report or tell me the result.  I kicked up such a fuss over the phone that finally I was passed to another gynaecologist whos said that if the result came through he would phone me.  If not I will have to wait till Monday, when my surgeon gets back, for him to chase the results.

Since January I have seen and/or been treated by my GP, the gynaecologist in Ganges, the second gynaecologist in Ganges who operated, radiologists in Ganges and Montpellier, the surgeon in Montpellier and an anaesthetist in Montpellier.  They all seem to operate as individuals, carry out their reports or treatments, give me the results, refer me by letter or prescription to the other medical people – but don’t seem talk to each other.  There is nobody driving or coordinating my case.

The lack of information on whether the cancer is Mullerian or not means the difference between a straightforward keyhole hysterectomy and much more major, extensive surgery.  Not to know which to expect next Wednesday is frustrating on a planning level (how many weeks do I have to arrange to be away, for example) but also distressing. Tomorrow I’m going to see my GP, Maelle, and ask her – in the absence of the surgeon – to contact the Lyon lab direct to try and follow this up.

 

April

Despite its contrary month, and the fact that each year I ‘celebrate’ getting older, April is my favourite month.  One starts with only the first signs of spring, and then day by day, another lush bit of greenery springs out.  Here, the lime tree beside tbe bassin, as well as my neighbour’s ash tree went from no leaves to being fully clothed in one week.

Scans and blood tests

In the last week I have had four needles stuck into me: a blood test in le Vigan, another in Montpellier, as well as inserting the ‘produit’ for the MRI, and then yesterday, a further injection of ‘produit’ for a scan in Ganges.

All health staff find it extremely finding a suitable vein.  They complain that my veins are too fine and slide around.  The le Vigan guy is by far the most efficient, one of the Montpellier people less so.  This is my arm, just above the wrist:

The latest needle was to inject me with iodine for a scan (‘thoraco-abdomino-pelvien’).  As usual the radiographer said that results were made difficult by my two false hips, but that he could see no sign of the cancer outside the uterus.  So more promising news.

Tax forms in!

It was filthy weather today, non-stop grey and wet.  But that’s just what you need to knuckle down and face the annual dreaded tax declaration.

I  started a couple of weeks ago by putting all my income in the spreadsheet.  Sounds easy, but remember that all income from the UK has to be expressed in euros.

I start by extracting the pensions I get sent direct to France from my monthly French bank statements.  Any money which I leave in the UK has to be converted to a euro equivalent.  In the past the local tax office has been at a loss as to how to do this, but I have now settled on an annual exchange rate I have found on the ECB site.

Today’s job was to complete the three online forms – the one everyone has, plus one because I’m a foreign resident, and one for foreign bank accounts. I still find it nerve-wracking, even though the online version has improved significantly over the past few years.

It’s good to have it behind me (not so good that the improved exchange rate i 2014 means I will pay more tax later this year – and this will of course be even higher towards the end of 2016 because of the 2015 rate).

My reward was the pleasure of attending a very good concert in Molieres, given by a well known (to keen amateurs like Peter!) musician Sigiswald Kuijken and his wife Marleen Thiers.  This was a Bach concert, topped and tailed by pleasant but not outstanding pieces.

Bach’s first cello suite was of course of particular interest to me as I have played’massacred it on many occasions.  And the Partita for violin is equally well known.

The concert was interesting from a musicology perspective: the first time I had heeard the suite played by an instrument attempting to replicate a period one, a small cello tucked under the chin like a violin.  Kuijken played with great intelligence and sensitivity, but ultimately – sacrilege, I know – I prefer it played with the sonority and style offered by a modern cello.  I had similar feelings about the Partita, which Kuijken played on an Italian period violin.

The hall – the filature at Molières – was packed and it was good to see so many friends there, including many from my old choir.

Lunch with Sylvia

A lovely sunny spring day and Sylvia came out of the Chataigniers to join her family for lunch in her garden at Loves.

Her son, Ivan, and family, as well as Yves and the daughter of Sylvia’s friend, Claudie were there.  The lunch, prepared by Ivan and Catherine, was delicious.  Best of all was to see Sylvia determined smiling, determined to enjoy herself.

Peter leaves

Peter left this morning after a rather unusual ten day holiday.  It started in the usual fashion: two lovely sunny days tasting and buying (too much!) wine.

As the days progressed we slipped into the usual routine: Peter cooking and Frances not.  I will remember above all the chicken curry he offered when Tony and Josie came to lunch.

When not cooking, Peter had to listen to me recounting or ranting in a week packed with health events.

The most long-lasting present was his generous clearing out of rubbish in my various caves and spaces under the houses, with three trips to the dechetterie. Peter did fit in a couple of what he would probably call ‘toddles’, but I hope next time that he will have less domestic tasks and more outings.

 

 

Meeting with surgeon

At first meeting Dr Courtieu seemed friendly and businesslike. He was also usefully clear in his explanations.

He said I was very lucky that Dr Maistre had picked up potential problems so early; whatever the type the tumor is still small and hopefully contained in the uterus. Even if it is a Mullerian tumour I have a hopeful outcome, whereas normally he operates on these at an advanced stage when things are much gloomier

Obviously I need a hysterectomy but he has to wait for the results from Lyon. If it is a normal tumor, he can do keyhole surgery and then maybe radiotherapy. If it is, as feared, a Mullerian tumour, he has to do old style and major surgery, to take out not only the uterus and ovaries, but also all lymphatic glands in the lower torso, in case the tumour has spread. They would only know after the biopsies after the op if this was the case but had to take this radical step as a precaution. I asked if there was not some way of testing the lymphs before taking them out and he said in theory it could be done with a PET scan, but the technology was not yet good enough and the results not reliable enough. So we are all waiting for the Lyon prof to come back from holiday.

I’m assuming the more major surgery (with probable blood transfusions) will be needed. Whatever the op, it is now set for 6 May.  Dr Courtieu said they would keep me in for at least a week.  He agreed that as I live alone I should then go to a maison de repos for a couple of weeks. So that is May accounted for in a rather bleak way 🙂

After the surgeon followed a session with an anaesthetist and then another blood test (so the laboratory can supply blood for transfusions) and an electrocardiograph. I have to go back to Ganges next week for another scan – of the upper part of the body, to ensure no other problems. Oh, and I must not forget to fill my prescription for yet more Betadine for yet more disinfectant ablutions the eve before and day of the op .

Every event today seemed to require another session with a secretary, providing details of residence etc, as well as handing over my carte vitale and coughing up cash (most gets reimbursed).  Bizarre, but at least patients in France are made aware of the cost of health care

 

IRM (MRI)

Well, here I am in the Centre d’Imagerie in the Clinique Beau Soleil, awaiting the results of my first ever IRM.
Can you believe it, after all that sweating to get all the documentation for my four protheses, all the nurse wanted to know was where they were. (Plus, having not peed for an hour, as instructed, this turned out to be unnecessary). Humph!
The IRM itself was no big deal: 20-30 minutes in the machine. The only problem was having been told I must not move at all I found it hard to breathe.

An hour later

A pleasant young doctor Gave me the results: a little inconclusive, because my hip replacements muddy the water. The tumour is luckily still quite small and appears to be retained in the uterus.  So- so far, cautious optimism. Now on to meet the gynae-surgeon.

Peter’s visit

As soon as Peter arrived last week, we set off on our wine making trips. Then he did a couple of – for him – modest toddles.
Then, I’m afraid his visited has descended into a lot of supporting-Frances tasks. He has done a fair bit of Poppy- minding during my various medical trips, putting up with social visits from my friends, and – as is happily the case with my family, pretty well all the cooking. The most memorable meal was a simply superb chicken curry (courtesy of Madur Jaffray) accompanied by a delicious vegetable dish based on cabbage of all things.
The stay has ended with a more longstanding gift: doing the bulk of the work in clearing up years of rubbish from the cave below our old house and then the spaces below my current house. We made three trips to the dėchetterie with the car loaded to the gills. All this on the two sunniest days.
And in between he has listened to my rants about health administration, as well as a blow by blow account of my two visits to the dentist (I had a tooth extraction and two implants on the day of his arrival).
Let’s hope Peter’s next visit is calmer – for all!