Radiotherapy # 10, 23 to go

Taxi arrived early, I arrived in a full waiting room before my appointment but I was seen almost immediately and first!  I always feel bad when this happens, I can only guess that the other patients have appointments due after my own.  I hope so anyway.  I always make a point of saying hello to every single person in the waiting room and saying goodbye to those who are there when I get out.  I think it's important that we show some solidarity together.  We are all there for the same shitty reason, so why not exchange a small courteous word?

There was another trainee today.  He seemed more self assured than the last one and that gave me confidence in him.  Another lesson for life - look like you know what you're doing and people will trust you and believe you!

True to everything I'd read and heard, my breast is starting to hurt.  I've had bad pins and needles in the left from time to time right from the start.  It is starting to go red now, however.  This can lead to quite serious burns and I'm a little disappointed as I'm doing all I can to stave off the burns but the redness is starting already.  With so many sessions to go, I'm worried about what state i'll be in when I've finished the next 23 sessions.  We'll see won't we?  I can't do anything more than what I'm doing now.

My scars have been on the left have been hurting too right at the end.

Thing to be grateful for today: the smile and acknowledgement from the trainee and the manipulator when I came in the room and their concern for me when they asked what side effects I was having and GG for dropping me off in the centre of Paris so I could get out of the house on this sunny day.

And my lovely friends with whom I shared a meal this evening.

Radtiotherapy # 9, 24 to go

Taxi was waiting for me when I came back from dropping off the children at school so we arrived early at the hospital.  I was seen on time and the trainee was left to situate me on the machine himself (supervised of course).  I am so tired today.  Thank goodness I don't have to work because the students are on work experience abroad.  I am rather nervous for the next 3 weeks when I'll be working at doing the treatments, still, I'll deal with that when I need to.

GG was gabbling away on and on.  I just wanted him to shut up and let me be quiet, but I didn't manage to say it, and yawning frequently didn't send the message strongly enough, so it was a relief to get out of the cab and get home although I didn't appreciate having to tidy the kitchen from the boys' and dh's meal last night (which I cooked for them).

I am pretty heavy-lidded today.  I feel a nap coming on....

Today I am grateful that I don't have to work today and that I can stay at home and rest.

Radiotherapy # 8, 25 to go

All as usual, I was seen very quickly and I saw the doctor immediately.  She examined me to see if there were any changes in the breast.  My scars are quite inflamed and the breasts a bit red, but it was both of them.  I have bruising on my sides coming out, both sides so it's not due to the current treatment, it's an after effect of the surgery.

Then I got a surprise (a nice one for a change).  The doctor said that she advised me to go on a cure for three weeks after the radiotherapy has finished at the Roche Posay spa in Poitiers, which would help me get full moblity in my arm, reduce and treat the scarring and treat and reduce any effects any burns that I might be getting, get me back in shape and basically cheer me up so I feel better and back on my feet.

You might be wondering, yes well that would be nice and the cost?  Well, this was the good, no, great, news, that the all the treatments, 40% of my accommodation, my train ticket would be paid for by the social security.  Writing this still makes me cry, I feel so happy that there is something nice that's going to happen afer all this, that there's a chance my body will feel, if not right again, but much better.  Done with the pain in the scars, my arm, breasts, shoulders and my skin will be beautiful again.  This is the light of the tunnel, I can feel human again.

The cure is for a minimum of 3 weeks so I'm hoping that the children and dh will be able to come for at least a week of it.  We'll have to try to plan it around the school holidays if we can.  This has given me the hope that all will be well in the end and that there will be a rest when this has all finished.  I'll have leafed through this brochure a million times before it all happens!

Today I am grateful for:  guess!

Dancing Queen

This video was sent to me by a friend, a short while ago, and apparently it's taking the internet by storm with over 2 million views.  It's an American, Deborah Cohan who dances her way round the operating theatre before she undergoes a double mastectomy.  I had mixed feelings about this.  I was not up for such a drastic operation but still I didn't feel like dancing around the operating theatre.  In fact I wouldn't have been allowed to,  nor been capable of, having already had a powerful pre op calmant.  Did that mean that I was not courageous nor 'brave enough' to dance around in the light of the 5 and half hour operation that faced me?  My entry into the operating theatre certainly wouldn't have been much fun on You Tube.  On the other hand, great that Deborah felt so happy she was undergoing the operation - she was obviously relieved to get to this point.  Each to their own.

The video has made the national news, primetime tv, magazines and newspapers in France, all of whom have saluted the 'courage of this young American woman'.  Many You Tube reactions were along the line of

Tears in my eyes ! you are soooooo brave, and, you rock girl ! wish you get well very soon, good health and keep on rocking :)

You're so inspiring ! Loved your beautiful positive spirit. You ROCK!!! I pray for you total and complete healing and speedy recovery . 

The latest newsletter from Rose Magazine beautifully encapsulated my mixed feelings.  A synopsis of the article entitled 'et Deborah Danse':

 The writer, despite searching, couldn't find a message in the video, she just saw someone in a 'charlotte' hat dancing.  Deborah's dance didn't tell any stories, for her, it shows that society would prefer us to accept cancer with joy and blot out death and suffering from the equation.  She doesn't know if Deborah is brave because she's dancing before the camera before her operation but she hoped that Deborah was brave coming out of the operation which would leave her in a very fragile state and in great pain for several months.

I don't know if Deborah was undergoing the operation as a preventative measure but the writer  evokes the 'paillette cancer' attitude which is being attributed to Angelina Jolie's recent decision to undergo a double mastectomy, but in fact she respects Jolie for her decision which is one she made because she was frightened about her beloved Mum's death of breast cancer, and she feels that it was courageous and put her career and sex symbol image in jeopardy and was done in discretion,  (no videos on You Tube).

The writer recounts that she knows plenty of brave women who have faced their operations with tears in their eyes and with bravado.  She knows others who turn up for chemotherapy treatments that will demolish their bodies without a guarantee that the cancer will be held back nor reduced.  She also knows many who have lost their job, their beauty, their social life, but nevertheless they continue to get up every morning, look after their children, without knowing that they will see those children grow up.

This, for the writer, is the reality of cancer that nobody forwards, tweets, shares, views nor 'likes'.

And for those who are scared, who worry or cry, what are they?  Cowards, not worthy of attention?

The writer does not blame Deborah Cahan as her dance was surely a moment of liberation for her.  The writer blames society that effaces visible cancer patients, hides the bare heads, the wigs, the apprehension that the cancer might return, the risk of dying and this image of a 'good cancer patient (une bonne cancéreuse).  A reassuring image for everybody - pastel slogans.  Keep up your spirits, don't cry!

The writer proposes a Zumba class ten minutes before every mastectomy so that everybody has a chance of being famous, their ten minutes of fame, their triumphant moment.

Allo ? T’as un cancer ? T’as un cancer et tu danses pas ? Allo ? Mais allo quoi !

(Hello? You've got cancer?  You've got cancer and you're not dancing?  Well, what's up with you then?')

And other reactions to the video on You Tube:

This is one of the sickest, craziest, egocentric, narcissistic things I have ever witnessed!!  An orchestrated, produced videotape with surgeons, nurses and "patient" joyously dancing!! This is "awesome", "inspiring", "you go girl"??  OK dancing relaxes her??  For all of us that have had major surgeries and cancer, who gives a s*** about this unprofessional, idiotic doctor??/patient-nauseating!!!!

This is a very disturbing video.  It appears to be an attempt to get attention or something.  And yes, it does look very staged.  I would not be comfortable with physicians and nurses dancing and acting foolishly right before any surgery much less a major one.  I mean....REALLY??!!!???

And here's the article itself:

http://www.rosemagazine.fr/Actus/Le-fil-Rose/Articles/Et-deborah-danse-11960/?scans

Postscript; I discussed this with the listening brunette psychologist, with whom I'm having weekly sessions, that have been going very well recently and have been extremely useful to me.  Her professional opinion was that she thought the video was extremely worrying. 

It was a good opportunity for me to talk about people's reactions to me and how to deal with them.

Radiotherapy # 7, 26 to go

No RT yesterday as they were doing maintenance on the machine so the end date is pushed back again:-(.  Instead, as my day has not been complete without a trip to some medical facility since August, I went to the dentist for a tooth reconstruction.

Actually I used to be really frightened of the dentist but now I really don't give a shit and the injection, although the thought was not thrilling, did not pose a problem for me and frankly I hardly felt it. 

GG was not available today so his wife kindly offered to take me to the hospital, an offer which I gratefully accepted.  She arrived early and off we went.

The second I stepped through the door for treatment, I was ushered through, which was really excellent.  Yellow door today.  The trainee seems to be growing in confidence and was not frightened of slightly touching my skin to locate the tattoos and it was him who placed me on the machine and he was corrected by the manipulator.  It took a little longer than usual.

I tried to show my friend the tattoo on my chest but I couldn't find it, as it was so small so I suggested to the manipulator that maybe they glowed in the dark.  Apparently not, they are just so used to finding them that it's easy for them when the lights are off and the laser beam illuminates them.

There seemed to be three boosts of rays today on both sides as opposed to two normally but maybe I'm going mad and I miscounted?  My breast is tingling a lot tonight on the side and it hurt enough to want a painkiller and I think the side has some red splotches on it.  I can't really see so I'll ask dh to have a look tonight.  I put the cream on a little earlier tonight so I'm already sitting here in my pjs so as the cream doesn't mark my clothes.

Things to be grateful for today - thank you:

An unexpected visit from the effervescent St L giving me just enough time to get out of my pjs (it was not early it has to be said!) And a quick visit from JLo who was bearing gifts - a much coveted copy of Grazia UK version (which I love, just the right mix of fashion and 'issues') to ease those waiting times and a new green tea to try

I feel a review coming on!

Dominique Bertinotti, ministre et malade du cancer

The French Junior Minister for the Family, Dominique Bertinotti, gives an interview to 'Le Monde' saying she's been getting treatment for cancer since last March. Not even the prime minister knew, although she had informed François Hollande. 

She said nothing. Neither to the first minister, Jean-Marc Ayrault, nor to her boss, Marisol Touraine,  nor to any other member of the Government.  After her first chemotherapy session, 2nd March, she just asked Francois Hollande for a meeting at the Elysée Palace, for 'personal reasons'.  She simply said 'I have cancer, I have begun treatment.  I would like this to remain strictly between us'.   The President advised her to make her own personal choice, that she must do what was best for her and if she chose to remain silent about her cancer, he would respect that. 

At that moment, the political agenda became intense as the law for 'mariage pour tous' was about to be brought before the Sénat - the law that would bring about much public opposition and political and public unrest. 

 

The interview then goes on to say that Dominique Bertinotti, 59, will soon be able to take off the wig that she has been wearing since 8 months.  She's about to do her last radiotherapy session.  There had been other ministers and political friends who had suspected that all was not well but still Madame Bertinotti chose to stay silent about her cancer.

As the article states, a politician who is ill is just like any other sick person.  However, they cite the example of the Danish TV series where a female politician is depicted as having breast cancer as being a rare illustration of a politician with cancer.  They also cite Francois Mitterand, who when suffering from prostrate cancer in 1992, firstly forced his doctor to lie to the public about his illness but who was eventually obliged to tell the truth about his illness.  Le Monde says there is no place for fragility in the world of politics.

Bertinotti describes the difficulty of finding a convenient time for a mammogram which she eventually undertook on 22 February when the radiologist announced the bad news that the images were suspect and that a biopsy of the area was needed urgently.  The results confirmed the suspicions from the mammogram and the proposed treatement at the Marie Curie Institut was chemotherapie, surgery and radiotherapy.  A chimotherapy catheter was put in and the treatment started in March.

Bertinotti says 'I had nothing, no sign.  And then, in a moment without warning, you become a sick person.  You enter into another world.  It drops like a stone onto your head and it never stops - the exams, the MRI, the cold sweats, the results which frighten you.  You bear it all on your shoulders'.

She remembers been given a sick note by the nurse and asking her 'who do I give this to?' and  remembers asking the question 'can I continue to work?'  The answer was that she had a 50/50 chance of being capable of continuing the work that she was so passionate about. Keeping the news secret was partly in her nature but also she felt she couldn't face the disease whilst being in the public eye.

She recalls buying her wig after the second session of chemotherapy when her hair began falling out when she decided to shave her head and recalls feeling hundreds of pairs of eyes on her in her role as minister and being in front of the public and the tv cameras, being scared that her wig would fall off.

After her eighth chimotherapy session at the end of August, just before her operation, she had to take part in a debate at La Rochelle and it was here she felt she had reached her physical limits.  She missed just one cabinet meeting, the day after her operation.

She did recall that her position as a minister did afford her several privileges during her treatment - a chauffeur instead of a taxi, not having to wait too long at the Curie Institut for example.

Bertinotti also recounts that at this time she took much more care of herself. She woke up earlier, to get made up, the more she felt ill, the more she took care of herself.

As Bertinotti says herself, the choice to stay silent was her personal choice.  It has to be said that sometimes a long absence from work is neither necessary nor the best option for everyone.  'As a minister, my only question was if I was capable of achieving my goal and it's done.'

Here's the article as it appeared in 'Le Monde' on 22 November 2013:

Dominique Bertinotti va bientôt enlever la perruque qu'elle porte depuis plus de huit mois. On verra d'un coup ses cheveux très courts. Elle vient d'effectuer cette semaine une dernière séance de radiothérapie avant "la quille", comme elle dit avec une volupté soudaine. Elle avait choisi le silence, elle fait tomber le masque.

En cent soixante-dix heures de débats sur le mariage pour tous entre l'Assemblée et le Sénat, où elle était en première ligne derrière la garde des sceaux, Christiane Taubira, personne ne s'est rendu compte de rien. Son amie Ségolène Royal lui avait bien trouvé mauvaise mine à l'université d'été du Parti socialiste à La Rochelle. La ministre des affaires sociales et de la santé, Marisol Touraine, s'était étonnée de "certains signes sur son visage". Sans plus. Il y a une quinzaine de jours, la ministre a demandé à voir Jean-Marc Ayrault. Ils se sont mis dans un coin de l'Assemblée nationale, il est tombé des nues. "Est-ce que tu as pu te reposer ?", lui a-t-il demandé.

UN POLITIQUE MALADE EST UN MALADE COMME LES AUTRES
Les hommes et les femmes politiques ne parlent jamais de leur cancer. A croire que cette maladie omniprésente dans nos vies modernes épargne étrangement les représentants de l'Etat français. Il faut aller au Danemark, dans la série télévisée "Borgen", pour trouver une femme politique, ancienne première ministre, en prise avec le cancer du sein. Ou remonter à François Mitterrand, obligé d'avouer un cancer de la prostate avancé en 1992, après avoir fait mentir son médecin personnel sur son état de santé pendant dix ans. La politique ne laisserait-elle place à aucun aveu de fragilité, en particulier en France, où l'on persiste à vouloir l'Etat protecteur et prométhéen ? Un politique malade est un malade comme les autres. A ceci près qu'il est sous constamment sous les regards. Et qu'il doit faire face un peu plus que d'autres à cet effet secondaire effrayant : un crâne chauve, sans sourcils, sans cils.
Au commencement, la mammographie de routine. Pas facile de choisir une date en plein projet de loi sur le mariage pour tous, qui a été présenté en conseil des ministres fin 2012. Au Parlement, on sait qu'on part pour des nuits marathon et qu'on ne maîtrise plus ses horaires. Le meilleur moment est pile entre la première lecture à l'Assemblée et celle du Sénat. Le 22 février tombe bien. Un vendredi. Qui n'a pas guetté avec hantise les signes de tête d'un radiologue ? La phrase tombe. "Les images sont très suspectes, il faut analyser les tissus, vite."

"ÇA VOUS TOMBE DESSUS ET ÇA NE S'ARRÊTE PLUS"
La ministre part avec son compte-rendu, un charabia savant, mais un mot apparaît : "malignité". Le reste va vite. Examen, ponctions, verdict. Rendez-vous à l'Institut Curie le 28 février. Le protocole : chimiothérapie, puis chirurgie, puis radiothérapie. Pose du cathéter le 1^er mars. Première chimio le 2. "Je n'avais rien, aucun signe. Et puis à un moment, sans transition, vous devenez un malade. Vous entrez bien portante, vous ressortez dans un autre monde. Ça vous tombe dessus et ça ne s'arrête plus, les examens, l'IRM, les sueurs froides, les résultats qui font peur. Vous prenez tout sur la tête."
La ministre a gardé en souvenir l'arrêt de travail d'une semaine que lui a donné l'infirmière. "A qui je vais donner ça ?", a-t-elle demandé. "A qui vous voulez", a répondu l'infirmière. La première question que la malade avait posée au médecin, c'était : "Est-ce que je vais pouvoir continuer à travailler ?" Réponse : "Une chance sur deux." Dans un deuxième temps, elle avait hasardé : "Est-ce que ça se guérit ?" Elle n'a obtenu ni un oui ni un non. Un discours avec des statistiques, des chiffres. Et elle n'a pas posé la question qui lui importait finalement le plus : "Est-ce que, en tant que personne publique, je vais pouvoir tenir le silence ? Est-ce que ça ne va pas se voir ? »
En rentrant, elle garde le secret. C'est sa nature. Le président Mitterrand, qui l'a nommée jadis mandataire des archives élyséennes, appréciait la pudeur extrême de cette agrégée d'histoire. Ceux à qui elle se confie se comptent sur les doigts d'une main : famille restreinte, une amie, trois personnes bien précises de son cabinet, et le président de la République. "Serais-je restée silencieuse si je n'avais pas été une femme politique ? Je ne sais pas. Personne ne peut dire comment on va entrer dans la maladie. Instinctivement, je ne voulais pas mettre le cancer au centre. Je voulais bien être une ministre malade, pas une malade ministre. C'est un tel ébranlement de vous-même… Je ne me sentais pas assez forte pour gérer en plus le regard des autres."
L'Assemblée nationale. Une centaine de paires d'yeux qui vous dévisagent. Des caméras qui vous scrutent. Dominique Bertinotti a acheté sa perruque un lundi, quelques jours après la deuxième séance de chimio. Les cheveux commençaient à tomber par touffes, elle a pris les devants, s'est fait raser la tête. Le lendemain, c'est mardi, les fameuses questions d'actualité générale. "Summum du summum, une question m'est adressée. Sur la réforme des prestations familiales ou le mariage, je ne sais plus. Là je me suis dit : “C'est la totale.” Vous vous levez, vous êtes filmée, il y a un public qui ne regarde que vous. On vous a répété que la perruque était très bien faite mais vous êtes sûre qu'elle va tomber. Là, je me souviens, je me suis dit : “Reste neutre, il ne faut surtout pas que tu bouges.”" Pas de réactions dans l'hémicycle. Elle se rassoit, presque heureuse. "J'ai pensé : c'est bon, ça peut passer."

"MINISTRE, PAS MINISTRE, ÇA VOUS ATTEINT DANS VOTRE CHAIR"
Elle n'a pas le souvenir d'avoir pleuré. Elle a vite coupé court à la diabolique tentation d'Internet et aux inventaires de cas anxiogènes. Elle a organisé son agenda en fonction des huit matinées de chimio avec l'équipement glacé – casque, moufles et chaussettes à – 20 degrés – prétendument pour aider la repousse des cheveux et des ongles, qui tombent aussi. Elle a veillé à ne pas être démasquée par les maquilleuses, avant un plateau-télé. Elle est allée puiser au bout de ses forces pour ne pas craquer, "ces lendemains de chimio où monter trois marches, c'est l'Everest". Elle a affronté sa sinistre tête chauve tous les matins devant la glace. Le cap des sourcils qui disparaissent, ce qui vous défigure. Cette sensation métallique dans la bouche. La perte du goût. "C'est une maladie qu'on ne peut pas oublier. Ministre, pas ministre, ça vous atteint dans votre chair."
Il y a les petits réconforts. L'infirmière de Curie qui vient la voir en catimini : "Il faut tenir sur le mariage pour tous, c'est bien, ne lâchez pas !" François Hollande qui n'évoque même pas l'idée qu'elle s'arrête de travailler. La "rare humanité" d'un médecin. Le coiffeur qui lui dit, après la tonte, qu'elle a "un beau crâne". "Vous n'imaginez pas le bien que ça fait. On se raccroche à ça."
La vie politique continue. La préparation de la loi sur la famille, les débats fous du mariage pour tous, les séances de nuit, la violence, les horreurs qui fusent. Cette nuit d'avril où les députés ont failli en venir aux mains, la ministre avait exceptionnellement demandé à son confrère chargé des relations avec le Parlement, Alain Vidalies, de rentrer chez elle plus tôt. Après sa huitième séance de chimio, fin août, juste avant son opération, elle discourait sur l'estrade de l'amphithéâtre à La Rochelle. "J'avais atteint mes limites physiques. Les yeux qui pleuraient. Je faisais de l'oedème." Elle manque une fois le conseil des ministres, le lendemain de son opération. "Elle a eu un problème de santé dans la nuit et ne peut être présente", fait-elle écrire au secrétaire général du gouvernement.
La politique l'a aussi aidée à tenir debout. Pas seulement pour les quelques privilèges – le droit de ne pas trop attendre à Curie, avoir un chauffeur plutôt qu'un taxi. Surtout pour "le supplément de défi" qu'il y a à être une personne publique. "J'étais obligée de m'occuper de moi deux fois plus. J'ai remonté mon heure de réveil pour me pomponner. Plus ça se détériore, plus vous vous maquillez. J'ai eu droit à : “Tu as vraiment bonne mine !” “Ta coiffure est très réussie !” C'est bon à prendre…"
Dominique Bertinotti, 59 ans, a hésité à nous raconter son cancer. Elle ne veut pas susciter la compassion, dit-elle. Elle ne veut pas en faire un instrument politique. Elle ne veut pas, surtout, "être réduite à un cancer". Pourquoi parle-t-elle maintenant, elle qui s'est astreinte à huit mois de secret quasi absolu ? "Pour aider à faire évoluer le regard de la société sur cette maladie dont le nom est terriblement anxiogène. Pour montrer qu'on peut avoir un cancer et continuer une vie au travail. Pour que les employeurs comprennent que la mise en congé longue maladie n'est pas forcément la meilleure des solutions. Pour qu'il y ait moins de peur, plus de compréhension. Pour qu'on réfléchisse sur les inégalités face au coût des traitements de confort, comme le vernis spécial pour les ongles ou la perruque, qui sont si importants." "Dominique nous a bluffés, dit Marisol Touraine. Pouvoir vivre avec sa maladie sera l'un des grands enjeux à venir."

Le dire, ne pas le dire ? "Même si nous l'avions su, le respect que l'on doit à une personne engagée et malade est de tenir le débat de façon ordinaire", note l'UMP Hervé Mariton, opposant vigoureux au mariage pour tous. Dominique Bertinotti n'a pas d'avis. "Ce choix du silence est de l'ordre de l'intime. Chacun a sa façon d'entrer en maladie. Comme ministre, ma seule question était de savoir si j'avais la capacité de remplir ma mission. C'est fait."

 

Radiotherapy # 6, 27 to go

My lovely friend M accompanied me to the appointment today.  We were early and glad to get out of the taxi with Gabbling Gaston.  Despite being early, I was taken for treatment almost immediately.  Back through the yellow door today.  The manipulator did admit that it was only 17° in the blue door machine so it was more pleasant for her to work behind the yellow door, as it was to be treated there!  There was a trainee today - a young guy.  I felt quite ill at ease taking my top off in fron tof him and I felt his uneasiness too, it wasn't very pleasant.

I had been quite upset for most of Saturday, bursting into tears for no particular reason.  I feel so uncomfortable about taking off my top every day in front of strangers time and time again (I know they have seen everything already but it's not about them but about me, how I feel), about lying still and passive on the bed whilst things are done to me, feeling the pain (sometimes not always) after each session and being in the general atmosphere of a hospital.  This therapy is taking more out of me than I expected, I'm surprised at the effect it's having on me, I didn't expect it to be so hard.

Anyway, we waited a little for the taxi back after the treatment, had a cup of tea thanks to the kind tea ladies and made our way home for lunch.

Things to be grateful for: All thanks to M today!  Thank you for crossing Paris to accompany me, for bringing lunch and our family dinner, for the treats from UK and the naughty box of Milk Tray, for the paperbacks, for the ironing, for not freaking out when we saw the bad cancer cases in the waiting room, for the company and chat and just for being there and helping me out today and keeping my spirits up.  I am very very grateful.