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Saturday, October 19, 2013

A Day at the Cancer Clinic

Yesterday morning early early I set off in a cloud of serenity for my 6 month contrôle at the René Huguenin/Insitut Curie cancer center in St. Cloud.  These follow-up appointments are very important - there are tests to see if the cancer has returned but it is also a chance for me and my oncologist (a goddess among women) to touch base and see how things are going.

My serenity was tested almost immediately.  I usually take the train from the Gare de Montreuil here in Versailles to St. Cloud.  It's a good 15 minute walk to that train station and for reasons that I will go into later I used to find an alternate route that would allow me to leave from the Porchefontaine train station which is only 2 minutes away.  It was not to be.  I arrived at my train station only to discover that all the trains to Paris had been cancelled due to technical problems on the line.  So I turned around and walked up to the other station where the trains were running normally.

I arrived in St. Cloud right on time and went in to register with the front desk and get the show on the road.

Walking into the center is like coming home.  It is a surprisingly cheerful place.  The walls are painted a bright yellow and the floors shine.  It has a particular smell which is not unpleasantly antiseptic and the waiting rooms are warm.  In a few short minutes, the chill in my hands and feet went away and after getting my fiche de circulation at the front desk I walked up to the first floor to get my blood work done.

Coming back downstairs for the consultation, I noticed a large group of women in the main hall.  They were dressed in long black skirts and had small caps on the back of their heads.  It had the feel of a cultural compromise - though they were dressed much more modestly than Frenchwomen they had on sheer black tights and black heels under those skirts.  The age range was from young adult to quite elderly and they were speaking a language I didn't recognize.  Just outside the clinic was a group of men also dressed mostly in black who were smoking and talking.  It was blatant segregation by sex - the women were inside and the men were outside and they did not mix.  But it was clear that they were together even though they occupied different spaces.  I watched the body language and I didn't detect any angst or fear so much as a kind of solidarity and concern.  Something was going on but it didn't have the air of a catastrophic event.

My consultation went very well.  The test results were not ready but there was a very thorough exam.  My oncologist has the most wonderful gentle hands and when she runs them over my shoulders and chest, it never feels invasive or uncomfortable.  Sometimes she even closes her eyes and just feels and at those moments I feel such peace - like a person and not a patient.  She also listens very well.  I've been having a lot of joint pain in my hips which could have any number of causes including age. It's not that I am writhing in pain - it's more like something that slows me down.  An almost constant ache which makes it hard to walk sometimes and saps my energy to get out and do even small things.  We had talked about this at our last visit and she remembered.  This, she said, was worthy of further investigation and she put me down for an MRI.  Just to be sure.

We also talked about life.  How was I doing?  Not to miss a moment to evangelize, I told her about some of the activist work I'm doing and why I'm doing it.  She was very interested and gave me her email address so that I can send her the published articles Lynne Swanson and I wrote.

In spite of not having the test results, I left her office around noon feeling pretty good.  Since my next appointment was much later in the afternoon, I walked down to one of my favorite churches for the 12:05 mass.

The church is called St. Cloadald (St. Cloud).  Born in 522, he was the son of a king and renounced the throne in order to become a monk and later a priest.  There has been a church or a chapel on this site since 560, they say, but it wasn't until Queen Marie-Antoinette that it was decided to build a church (not a chapel) there.  The stones were laid, some of the walls raised and then came the Revolution.   Work stopped until Napoleon II restarted it and the present church was finished and consecrated in 1878.

I've visited many times but each walk through yields something new.  There is a fresco at the entrance which asks that we pray for Marie Antoinette.  At the back of the church is the chapel where the relics of St. Cloud were regathered after the revolution.  One side of the chapel is a fresco that tells the story of St. Cloud and the other side are a few words about a visit from the bishop of St. Cloud, Minnesota in  the US in 1922.  Going farther into the church, there is a statue of Jean d'Arc and there are always candles burning there.  At the very back, to the left of the altar is a chapel to Mary and almost always a few people praying regardless of the hour.

The Mass itself is always wonderful.  Go to Mass anywhere in the world and it's always the same ritual in the local language or Latin.  There are, however, small variations according to the inclinations of the local priest and parish.  The prelude to this Mass is a singing of the Psalms.  The Mass itself is a mix of French, Latin and Greek - mostly sung which is not always the case in all Catholic churches.  This linguistic mix is, from my experience, quite common in the French church.  For example, we almost always use the Greek for the Penitential Rite:

Κύριε ελέησον Kyrie eléison (Seigneur, prends pitié, Lord, have mercy)
Χριστε ελέησον Christe eléison (Christ, prends pitié, Christ, have mercy)
Κύριε ελέησον Kyrie eléison (Seigneur, prends pitié, Lord, have mercy)

And the Latin for the Gloria, the Sanctus and the Lamb of God (Agnus Dei):

Agnus Dei
qui tollis peccata mundi
miserere nobis...

The rest is in standard modern French which, honestly, I find less elegant than the English used in anglophone Masses.  "Our Father who art in heaven, hallowed be thy name...."

No Catholic parish anywhere in the world is required to use the Latin/Greek but I like the ones that do. If a community can be said to unite the living, the dead and the yet to be born then using the same words in the same language as the generations before is one way to make the past live in the present.

After Mass I picked up a sandwich at the local bakery and went back to the clinic to wait.  Two hours later I was ushered into yet another consultation room for a meeting with the plasticien (plastic surgeon).  This visit was not nearly as rewarding as the time I spent with my oncologist.  

What I retained from my chat with the surgeon was that, yes, I could have reconstruction but the only real option is implants - I simply don't have enough flesh on my tummy and my back to do otherwise. Concerning the implants, I must choose between silicon or another kind and the surgeon gave a brief overview of the pros and cons not one word of which penetrated my tired brain.

After that I was given the bad news which is that I am now on a waiting list and the earliest available appointment is one year from now with the surgery to be done 6-12 months after that.  That means an 18 month to 2 year wait.

I left her office with a pile of paper to read and a sense of discouragement. As I walked out of the clinic in a deep depression I discovered the reason for that large group of migrants I saw earlier.  A woman, about my age, with a walker and a bandage on her shoulder being helped out of the clinic and placed gently in the back seat of a waiting sedan.

At that moment I did not feel like a "fortunate" migrant.  I cursed my own culture which is not one that places a lot of value on solidarity at home or abroad.  One that is radically individualistic and places a premium on independence and not needing or asking for help from others. There were over 40 people at the clinic just sitting there and talking - all for one lone woman.   Not fair, I know, to make comparisons but in that moment I was painfully conscious that I was tired, hungry, bewildered, and alone.

When I finally made it home an hour later the first order of business was food and the second was rest.  That made things brighter.   And then my mother-in-law called from Amiens to make sure I was alright.  That made things even better.  By the time my husband arrived at about 9:00, the world was right once again.

It was quite the day.


Blaze said...

I wish I could have been with you to hold your hand. I don't know if you could feel it, but I thought about you often yesterday.

I checked here first thing this morning to see if you had posted anything about yesterday. Nothing.

I was glad to see an update when I just checked again. I hope you are able to recharge your body and spirit now that you are back home with your husband and garden.

Joy said...

You are never alone, Victoria, you are in my prayers every day. I love you

Victoria FERAUGE said...

This is definitely a situation where feelings aren't facts.

I should not have gone by myself. I should have asked for help. I'm in recovery (not 100%). I knew this and sailed blithely off without taking into account my limitations (and boy does it irritate me to have limitations). I was exhausted by the end of the day and had the intellectual ability of a gnat. I can still feel it today - just not feeling like doing much except for cooking comfort food: a Betty Crocker golden cake with shiny chocolate frosting. My spouse is making dinner.

@Joy, I love you too, Auntie Joy, and I miss you a lot.

P. Moore said...

Victoria, That was quite a day, but despite the struggle there is certainly something positive to take away. That is, I bet you learned a fair bit during that day and it will stick in your mind for a long time. Obviously by the end of the day you recognized how lucky you are despite all these trials. Strange how these things put life into perspective and make you forget the trivial annoyances.

Shirl and Rowan said...

Hey, Victoria. I haven't posted many comments lately, but I have been reading every post you have written for years now. I still remember when we met in Paris, well, I guess a year and a half ago now. I am so impressed with the depth of your posts, the degree to which you share, and the breadth of your subjects. Here, in this one, you really told it true. Thanks so much for sharing. We can all use the encouragement to ask for help. We are all here for you, at least virtually.
Rowan and Shirl

Donna said...

Bless you.

Rosy said...

It's as if we'd been there with you. I'm sure nobody who hasn't has the experience would want to trade places with you. It must be disappointing about that long wait for reconstruction. But your radiating light will do what no surgery can replace. Love you ! P.S. I also enjoyed the Betty Crocker golden cake..

Julia Gandrud (aka JuliaLikesFrogs) said...

I just had a double, nipple-sparing mastectomy last Wednesday. Your blog came at a good time, for me.

One thing for which I am very deeply grateful, in all of this cancer journey, is the support of others. I honestly did not know humanity was so good before this.

I am with you in my thoughts, sister.

And reconstruction... yes, this is quite a tough decision. I have decided to do no reconstruction at all. Some of this was based on my realization that I was going to miss MY breasts, that I wanted MY breasts, and no one else's idea of breasts would do the trick.

Also, according to the Dana Farber statistics, which tend to be pretty darned good, about half of all women who have reconstruction have complications, and the physical strain of the natural, from the body style of reconstruction often takes a lot out of women-more than literally.

Good luck with whatever options work out the best for you!

Tim said...

Not to be too nosy I am curious as to what the justification for the wait listing is? All of the surgeons too busy for all the next year?

Victoria FERAUGE said...

@P. Moore. You're right. I had lunch with my friend JJ the other day and he asked about life in general and I said, well, having cancer is not something I would wish on anyone and it's definitely not a GOOD thing. Nonetheless, many good things have come with the bad. One of those is surely a complete rearrangement of priorities.

@Rowan and Shirl, How are you folks doing? New house? Learning to ask for help, accepting one's limitations, realizing that one is imperfect and makes mistakes - these are things I got from folks like YOU. Thank you.

@Donna, Pax.

@Rosy, Yesterday my neighbor who hails from Brittany brought me crepes. So today I will make another cake and bring it over to her. Love you back and I hope all is well with you.

@Julia, My dear dear sister. Sending many healing vibes and prayers your way. I know what you mean both about the goodness of people and about missing YOUR breasts. Implants won't be the same. But I do like the idea of having something (I lost everything including nipples). Please take care and let me know how you're doing.

@Time, Answer in today's post. :-)

bubblebustin said...

Victoria, you are one of the most courageous people I've had the honour of meeting. The fact that you haven't withdrawn from the world as a result of what you've been faced with is extremely admirable. What an inspiration you are for anyone who is faced with a life threatening condition. You leave a large wake and I look forward to reading about your breast reconstruction journey should you choose to share.

Christophe said...

Dear Victoria,

I wished you weren't alone on that day and that your loved ones could have come with you.

I wish to comment on a couple points.

- Length of time to get an appointment.

Most foreign people attribute some of the lengthy times to get an appointment to the single payer system and the fact that everyone is insured. That is mostly wrong.
Part of the blame is on
a) the government / educational system, for limiting the number of practitioners that graduate each year. By design, only a limited number of people can graduate and this created the shortage.

b) limited number of doctors in some more rural areas of France.
Doctors like everyone else want to benefit for the 35 hour week. This is not possible to do in rural areas. The ones that graduate would rather work in bigger cities, with more doctors, requiring them to work less hours.
The shortage affects different parts differently.

I think that if they made changes to the educational system, and somehow incented doctors to work in more rural areas, this would improve the shortage.

- You said "At that moment I did not feel like a "fortunate" migrant. I cursed my own culture which is not one that places a lot of value on solidarity at home or abroad. One that is radically individualistic and places a premium on independence and not needing or asking for help from others."

I don't know if I agree with that. From what I see in the US, people are very generous in the form of fundraising and people affected by diseases usually have nice support groups of family and friends. Some companies also encourage giving (time and money) as a support to local communities.
That is nice. But I don't know if I really like the system. God forbid I would ever be so sick that this would require medical care that I could not afford. I would be to proud to ask for strangers money to pay for it. I don't see these medical fundraising any differently than the guy that begs for money at a street light. I would not do it.

Tim said...


After talking to a friend of mine who works at a big prestigious US hospital there are a couple of comments I will make. From the standpoint of a lot of high end hospitals both in Canada and the US it doesn't really matter how many med school graduates there are in any given year as they are only interested in hiring the "best of the best." To the extent they wish to make the staff bigger they will tend to hire more nurses and physician assistants although here too they only want the "best of the best." As a general rule when the big prestigious hospitals like Sunnybrook, Brigham and Women's, or Mass General wish to expand they tend to go into very specialized areas like high risk pregnancies, severe third degree burns, or Laryngeal Surgery to name a few. The outer edge of medicine basically.

In terms of working hours. The hours at someplace like Mass General or Sunnybrook are far far worse than that of a rural general practioner. Patients in areas like severe burns or high risk pregnancies need 24 by 7 care plus for a lot of strange reasons complex surgeries such as open heart are scheduled in the middle of the night often. There are some exceptions in some cutting edge areas such as Laryngeal Surgery to be sure but it tends to be the exception not the rule. Additionally hospitals like Sunnybrook and Brigham's are Level One trauma centers are receive horribly managled patients at all hours of the day and night often by helicopter.