Last week was pretty rough. I went in for my for my first chemo session in early June and have been home recovering ever since. Yesterday was the first day in the last two weeks that I have felt quasi-normal and was able to get out and do a bit of jardinage (gardening) in the Flophouse garden. I had all of the effets secondaires (side effects): nausea, fatigue and other fun stuff. For the first few days I lived on biscuits and lemonade (the French version is nice and fizzy but has much less sugar then the equivalent in the U.S.) The first thing I did after the nausea started subsiding was to stuff myself with fresh fruits and vegetables. I have never been so happy to see slightly crunchy steamed broccoli on my plate...
That said, it could have much worse. I seem to be in the mid-range as far as side effects go. The anti-nausea medication I was given worked pretty well. I was warned ahead of time that the nausea would last from 2-5 days and I started being able to eat normally about day 3. All to the good. Now I just have to do it 5 more times every 3 weeks or so. :-)
About the chemo. First session was on June 7th. I arrived at the hospital en temps et en heure (in good time and in good order) and waited for about an hour in the waiting room. I had a lot of company - the room was filled with folks in various stages of treatment, young and old. I had a very nice conversation with an older woman who noticed my Ipad and asked to have a look because her son wanted to get her one. I felt a lot of solidarity in that room and the French (who are not normally very chatty with strangers) were striking up conversations right and left.
I was finally called in and since it was my first time I saw a new doctor who examined me and we had a little "get to know each other" chat. This did not go very well and to understand why I need to give you some information about something I don't talk about much in general conversation and have never discussed on my blog. My cancer is not the first life-threatening illness I have experienced - it is the second. I am a recovering alcoholic. I am a very lucky woman because I recognized I had a problem and got myself into treatment. These days I do not drink and I believe that my health and sanity are contingent on my never ever picking up another glass of wine again. That may sound scary to those of you who think that it's not possible to live in the country of fine wine and delicious cheese and not drink alcohol but, hey, there is a lot more to France than that and, yes, it is entirely possible to have a very good time here without having to sit in bistros and drink kir. If you have any doubts or if you are someone who is afraid to come here because you have a problem with alcohol and you think France is too dangerous for your sobriety, send me an email and I'll put you in touch with the people who helped (and are still helping) me.
Why am I talking about this? Because I think there is an important lesson in here about cultural bias and medical care. Alcoholism is a recognized problem in France but there are some important cultural barriers to getting treatment through the system. Let's start with the language. In English there are words and terms that have come into common usage that simply do not translate well into French. Terms like "recovering alcoholic" and "high-functioning alcoholic." My experience has been that if you tell a French person that you are an alcoholic who doesn't drink, he/she has a moment of cognitive dissonance. How can you be an alcoholic and not drink? The mere fact that you are able to be abstinent is for many a clear sign that you are not. Nothing could be farther from the truth but I've had a very hard time getting this message across to the extent that very well-meaning people who sincerely care about me still try to push drinks on me because, in their minds, I have proven that I don't have a problem with alcohol because I have been sober for so long.
There is also a stigma associated with the word "alcoholic." It tends to bring up visions of bums sleeping in the metro with a bottle of cheap red dangling from their fingertips. When you, female middle-class professional with a high income, nice clothes and a Gucci purse talk about this, frequently you are simply not taken very seriously. And finally the doctors I have seen here about this seem to be more oriented toward to getting you back to a place where you can drink again. Not one French doctor I've seen over the years ever seriously considered abstinence from alcohol as a realistic or desirable possibility. I was given tranquilizers and told that if I could abstain for 30 days I would be "cured" and able to drink again. I've talked to people here about my experience with French healthcare on this topic and this seems to be pretty standard. In fact many of these folks (French and foreign) said that the outcome of this treatment for them was that they ended up hooked on prescription drugs (tranquilizers and other anti-anxiety medication) AND alcohol. I ended up seeking an alternative to standard medical care and so did they.
In all the consultations I've had with the hospital I have talked openly about my situation and have made it very clear that I do not want the doctors to prescribe any mood-altering substances. Not only is this deadly for my health, it is also about my wishes which I want respected. My morale is good, I don't need them and there is no medical reason to give them to me - tranks do not cure cancer.
However, tranquilizers are a standard component in the Chemo Cocktail here in France and you have to ask to have it removed. I not only did this but I asked that it be put on my chart. For the most part the doctors have been very supportive but it was just my bad luck that for my first chemo session I stumbled upon one who looked me up and down and simply didn't believe me. When I looked at the list of medications in my personalized chemo cocktail and had questions about one line that looked suspicious to me, she simply told me it was part of the treatment and I should not be concerned about it. It was the nurse who caught it. She had started preparing the medication, looked at my chart, looked again, and then came over to talk with me. Madame, you are an alcoholic? Yes. You don't want the tranquilizers? That's right. Did you tell the doctor? Yes. Well, they are still in the prescription. Do you confirm that you don't want them? Yes, I absolutely do NOT want them. She then pursed her lips, marched out the door and, I presume, went to have a chat with the doctor. When she came back she dumped everything she had prepared up to that point and started over. When she started the drip she assured me that the tranquilizers had been removed. Everything went just fine from that point on and I thanked the nurse profusely many times during the session and after just before I left to go home.
This experience was a conjunction of two things which have nothing really to do with medical care and everything to do with cultural attitudes. The first was a doctor who, I believe, truly thought that she was giving good care. The tranquilizers are standard because they want patients to be comfortable and not ridden with anxiety. In the balance between my wishes and what she thought was in my best interests, she made a determination that it was better to give them to me even if I didn't want them. The second (which was also about the doctor) was an inability to square this well-dressed, nearing middle-age, professional lady with something like alcoholism. She simply didn't believe me and the clincher was, I think, when she asked me if I had ever had liver failure and I said, "No." All's well that ends well and fortunately there was another medical professional who took the time to double-check my chart and went to bat for me.
A few months ago I came across an EU report on alcohol abuse in Europe. I can't find the report in my archives so I am unable to quote from it directly but here were the messages I remember. Alcohol abuse is a serious problem in Europe which is not confined to the East. Contrary to the myth that the French don't abuse alcohol because they have learned to drink normally from the cradle, alcoholism is a serious health issue here. In addition to problems like liver failure and certain forms of cancer it is an important factor in the high number of automobile accidents. The report called for better treatment for alcoholism through the national healthcare systems and it said that if the French (and other Europeans) would just drink a little bit less, it would go a long way toward filling the "trou" (hole) in the budget of the sécurité sociale. The conclusions of the report were met with skepticism and outright hostility by the alcohol industry here (that includes the winemakers and their associations) and was promptly buried deep. About the only thing you see these days that shows some concern about this on the part of the state is a message on wine and other liquor bottles that mildly advises us all to "Drink moderately." A step in the right direction that nonetheless does not take into account those who can't and we are legion. Even in France.
When I first went into treatment, I was a bit annoyed by my fellow sufferers who insisted that they were "grateful" to be here and in recovery. What, in heaven's name, I asked myself, is there to be grateful for? Ah, how quickly things change. These days, I am on-my-knees grateful. I could not imagine the nightmare of going through cancer treatment as an active alcoholic. Through the program I joined, I was given tools that saved my life. All these tools are turning out to be very useful as I fight my second life-threatening condition.
So today when folks ask me how I'm coping with cancer, I have the answer:
One day at a time, folks, one day at a time.