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.

Radiotherapy # 5, 28 to go

I had to call on my lovely friend who took me for the bone scan today as GG wasn't available for transport.  We met outside school after dropping the children and arrived at the hospital early.

There were loads of people waiting so I thought I'd be in for a long haul but I was called before all of them and was treated immediately, still in the blue room (it's a bit cold in there).  I was placed on the machine really quickly and the treatment was over in a flash today.

I was given my hours for next week and they've only scheduled 4 sessions instead of 5.  I shall have to call them to ask why and to change Thursday to afternoon not morning so I can double up and do my dr appointment after the treatment, otherwise it's another appointment on Saturday morning which is a bummer.  All this is a lot about organisation, every day organising this and that, remembering to take the homeopathic medication before and after, put the cream on, dr, transport, hours, school, husband, children.  I am very tired today and my breast hurts again inside.

Anyway I had an orange juice in the hospital cafe with my friend and she took me back home.

Today I'm grateful to my friend for being so kind as to take 90mins out of her day to drop me, offer to wait and take me home.  It was much less lonely being able to chat to her and have a drink afterwards.  It was a nicer experience.

Radiotherapy # 4, 29 to go

A rainy day meant we arrived just in time.  No need to stress as the machine was out of order.  I overheard a manipulator telling a fellow patient that they'd left a message for him not to come as they couldn't administer a treatment.  I must have groaned out loud as she looked at me and said 'it's ok we can take you on the other machine'.  So, I waited and eventually they called me up into the blue room instead of the yellow room and placed me on the machine.

It took ages for them to get me in the correct position on the machine and consulted with their colleagues.  I was glad that they took so long to get it right and didn't just think 'oh fuck it, it's about right, let's push the button and get it over with'.

Anyway it was a really long session and my left arm and shoulder really hurt afterwards as I was in position so long.

I then saw the doctor who was just checking in as to how I was doing.  I said it was weird having a therapy where you couldn't feel anything.  She said 'yes, you said the same thing last week!'  Well, I said, it must still be weird alors.  She said but you must be feeling something and I explained what I was feeling, electric shocks in my breast and painful and thickening and heat in the breast.  She said it was all normal.

She also reassured me that the rays should not touch my heart, maybe touch my lungs but not much and they were not dangerous if they were touched a bit.  Hmmm, hope not.

Then GG took me home.  He was on time today and didn't depress me with his cancer stories but he did tell me about his time on Prozac.  Man that guy really needs to see a psychologist!

Today I am grateful for the help of the pharamacy who helped me locate the reccomended soap that is non agressive to the skin and means that the skin has no chemicals on it before the treatment begins, thus helping to avoid burns (photo below).  I mentioned that I really liked a particular brand - Bio by Nuxe (they were advertising it on the counter) so the pharmacian gave me some testers for other products by Nuxe which I'm looking forward to trying.

Radiotherapy # 3, 30 to go

I'm peed off today.  The taxi was 45 mins late.  GG said he was stuck in traffic but the roads didn't seem difficult on the way to the hospital.....Anyway he said sorry, it's done with.

I don't like the afternoon manipulator team as much as the morning one.  When I went into the room, one of the manipulators didn't even turn to say hello and she forgot to put the electrodes on the side of my body for the second phase today.

There was also confusion about my appointment tomorrow which I had changed last week but the change hadn't been noted on the computer.   The dr wants to see me every week on a Thursday so I have to go late, do the treatment then wait to see her.  If I can't see her, I have to make an appointment for Saturday morning in another hospital to see her on a weekly basis;  No way, I am not taking medical appointments on yet another day of the week, enough already with 5.

I also asked about a few things that were worrying me - I seem to have electric shock type pains in my breast and it was painful to put the cream on last night, so much that I took a painkiller and my throat hurts and my voice is hoarse.  I wanted to know if this was normal just 2 sessions into the treatment (surely not) or if this is something else.  That's the problem when you're doing a treatment like this that you can't see; you don't really know what's causing what.  Anyhow, the manipulator just said 'ask the doctor', whereas the morning team had indicated that they are the link to the doctor and I should tell them anything I need to.

Also because of the delayed appointment, dh was obliged to ask a neigbour to look after Loic so he could take my other son swimming.  So it was a bit of a crappy session.  Also, I was thinking about the session all day.  I'd much prefer the morning sessions to the evening.

The thing I'm grateful for today is our neigbours who looked after Loic without hesitation and urged me to ask them if and when I needed them.

Radiotherapy # 2, 31 to go

Seen quickly.  Electrodes measuring the dose are just during the first week to check things out.  Still weird and a bit frightening with the big machine so near the face and the bed so high up.  I have to put cream called Dexeryl on the area a few hours after the treatment and wash the cream off in the shower the next day before the next treatment.

I am struck by the politeness and gentleness of everyone in the oncology wing - everyone in the waiting room says hello and goodbye to each other and smiles, a small way of acknowledging that we'd all really rather be doing something else but here we are anyway so we might as well smile and wish each other a good day.  There is a certian complicity in cancer; we are all in the same boat more or less after all.

Today I am grateful for the lady who brings the tea trolley and serves a nice mint tea and the fellow patient who gave me her biscuit allocation when she heard me say that I hadn't eaten breakfast yet.

Radiotherapy #1, 32 to go

So the taxi arrived on time, we arrived early at the hospital.  I was seen almost immediately, just in time to see St L arriving to support me for this milestone morning.

My photo was taken for the files so I can be recognised by all of the staff.  It's interesting that they ask me every time for my personal details, name, address, date of birth.  I wondered if there were perhaps imposters who penetrated the oncology wing and impersonated people to get a dose of radiotherapy just for kicks!

The session began with a new thing - I had electrodes taped to my upper breast then on the side to check the amount of dose I was getting so the only way I knew I was in the treatment phase is that the electrodes were taped on then taped to the side, so the treatment is in two short phases.  They also took more x rays to check the area because of my 'generous' breast area.  What they really mean is the chunk of fat on my back but they are too polite to say so!

When I'm feeling uncomfortable or upset or anxious, I realise that quite frequently I feel angry with the person who is giving me the test or treatment and although I'm not rude, I feel antipithy towards them.  Today I started feeling like this but suddenly half way through the treatment I just felt really grateful for them for being so nice and trying to put me at ease and do a good job.  I hope I can continue the next 32 times to feel like that, it was a nicer feeling than fear or anger.

I didn't feel anything when the treatment was taking place.  No particular noise, no heat, nothing.  I find it very bizzare that it's totally invisible and soundless, it's still a bit creepy to me.

I had chance to chat to St L in the waiting room for a bit and we made our way upstairs.  My taxi took me home and for a 9h30 appointment I was home at 10h30.  It was good to have a chat afterwards, I think I'd have felt a bit 'flat' and alone if she hadn't been there.

Gaston Garrolous the taxi driver kept me entertained with his stories on the way home.

When I got home I did have some little electric shock feelings in my treated breast, more than usual but I'm not sure it was about the radiotherapy.  I took it easy for the rest of the day.

Taking a leaf out of my friend's FB countdown to Thanksgiving posts, I've decided to find something each day that I'm grateful for, trying to keep it up for the duration of the treatment.

Today there are lots of things.  I'm grateful for:-
The company of St L this morning
For a taxi driver who arrived on time and is very pleasant and kind
For the care and attention of the manipulators whilst I was on the table and their discretion
For the fact that I'm not the driver's 42yr old patient with an inoperable brain tumour who is going to die of cancer

How not to say the wrong thing

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

This is very excellent advice from the Los Angeles Times through the blog 'Cancer is not a Gift', for those who find themselves with a friend or relative who is ill.  The rule is comfort IN dump OUT.

I wish certain people had read this and taken note before dumping IN!! 

Free free it's all free!

Speaking to an American colleague, who is very supportive and always wants to find the bright side of everything, we were discussing the health systems in UK, France and US.  He made me remember this:-

On Thursday

I saw a psychologist for free
I was taken by taxi from her office to the hospital, free
I was looked after by the manipulators finding the correct position for me for half an hour, for free
I had an appointment with the oncology radiation specialist, free
I had a free cup of tea from the nice lady with the tea trolley
I was taken home in a free taxi by a driver who had been waiting for me

There is no money exchanged for any of these exams and services, no need to use the health plan.  If you have cancer, everything is taken care of 100%.  This was enormously reassuring once we were forced to embark on this sad adventure. 

Just a small example but it costs 14€ for me to get to and from the hospital (one bus, one stop on the train, one bus so 3 tickets) and if you multiply that by 36 times, that's quite a cost considering that my ability to work has already been vastly reduced, thus my earnings.  And this is just one of the costs involved. 

I know the French health system is on the edge in terms of funding and the President is having to bring in some very unpopular reforms to pay for it, but just right now I am very glad it exists and it's supporting me and helping me to hang on in there.

So, thank you France!

Radiotherapy appointment 3

I was expecting and had prepared myself mentally to start the radiotherapy treatment on Thursday.  I saw the psychologist then a taxi picked me up to take me to the hospital.  I was called pretty quickly and had the disappointing news that the doctor wasn't happy with the preparation done on Tuesday and she wanted to increase the zone to be treated by a few millimetres.

So back in the same room with the same machine doing the same process as before.  Once again, the scary machine whirring and buzzing around my head and body.  I looked at the peaceful mountain scene on the ceiling and waited for the manipulators to do their bit.

My appointment on Friday was also cancelled and I'll start the radiotherapy treatment proper on Monday.

After I saw the doctor, as I would every Thursday afternoon, to see how things are going.  I was glad to get a better explanation of how the treatment works.  Basically, the whole 'breast' area (I don't really consider that I have a breast any longer, just a lump of fat on my chest) is treated for 25 sessions then the last 8 sessions will involve a more intense treatment (using photons and electrons) on the area where the tumour was taken out.  I didn't ask but I think the area where the tumor was doesn't exist any longer because it's been chopped off, I'll have to get my brain together to ask more questions next week.

I'm a bit puzzled about after treatment to avoid burns right now too as I heard a nurse speaking loudly to an old lady telling her not to put cream on the burnt area as it makes it even worse.  Confused.

My little book from Etincelle tells me that the radiation basically acts on the cells' DNA  (healthy and unhealthy cells, all of them) in the treated area and eventually destroys the cells because after a while, they try to repair themselves (because they notice that the radiation has damaged them) by multiplying and then die because they cannot multiply because they've been radiated.  So new ones grow to replace them and the new ones are healthy ones.  Radiotherapy is measured in units of Gray -Gy after the English physician.

The delay in beginning the treatment means that I'll be in the most intensive phase at Christmas, over the holiday period and school holidays which is really really crap timing.  The end of the treatment should be in early January but, according to how the treatment is going, the number of sessions per week can be reduced to four or three if the secondary effects are too intense, so that too will elongate the treatment time.

I have a whole different depressing post about the research I've done on side effects of this treament.  At the moment, though it's affecting me very deeply and I feel like I'm cracking up in my head.

Greetings from the US of A

I have been really really touched to recieve so many lovely cards with good wishes.  I've displayed them in the living room and every time I look at them I have a good feeling inside.

Here's one I received last week, a big surprise, from a lovely American friend who has just moved back to set up her own restaurant with her dh in one of the southern states.  I didn't know that she knew I'd been going through treatments.  I don't know how she found out but I was touched that she went to the trouble of showing me that she cared and sending not one but two cards!

Here they are

Only the USA could have a occasion card for cancer!  I loved both of these cards, they are funny, poignant and sweet.  Thank you my friend!

Radiotherapy appointment 2

I went to the appointment alone on public transport and I think it was a mistake to go alone.

Easier to find the radio/chemo wing this time so no more wandering around searching and I arrived in the right place no problem.

The waiting room was full of unhappy looking folk and the radiotherapy waiting room only had a couple of people - a very emaciated old lady wearing a headscarf (who, despite her ill looking appearance was actually quite sparky) and a lady in her sixties with a wig.  I just don't see myself as an ill person and coming to this place reminds me of my illness and makes me feel much more isolated from the world outside and much more part of this horrible, sad world of ill people.

The turnover of patients was pretty quick and the waiting time didn't seem too long.  I was seen within 20 mins of my appointment time. 

I was called and went into a little changing cubicle, took off my top and was told to keep my cardigan on until the treatment room and asked to wait for the radiologist to fetch me from the cubicle.  Then I was led down a short corridor into the treatment room.  The radiation apparatus is extremely large and very impressive and overwhelming.  Huge.  I was told to lie down and put my arm above my head and to stay absolutely still.

The aim of the appointment was to situate me on the machine so that the rays would be hitting my breast and avoiding my lungs and heart.  Once in position, I was left in the room with the radiologist issuing instructions through an intercom.  They came in to change the level of the table or the angle and to measure with a ruler and various apparatus from time to time.

I have to say up until this moment, the only moment I had felt really really scared, frightened, panicked was the moment just before I went under before the operation.  I've had (and still have) fear and worries - those that give you a dull feeling in your stomach or keep you awake at night or gnaw away at your thoughts and occupy your head.  But actual fright came to me yesterday lying on that huge machine that was whirring and whizzing around me, parts of it moving up, down and things I wasn't able to see.  At one point a huge plate of metal with a camera in it,  the size of a cupboard, moved very close to my face and I very nearly panicked totally and got up.  I feel like crying even as I write this and recall the feelings I had back there.

I know I'll get used to this after 33 sessions but this first 'try out' was really freaky and made me cry.  I so do not want to do this.

Bone scan

Patrice had given me a prescription for a bone scan 'just to check', he was a bit vague about what this meant but I took the prescription and thought it's another thing to do.  I left it a week as I had just had enough of the medical interventions and tests and check ups.

The exam is called a scintigraphie.

http://www.cancer.be/la-scintigraphie-osseuse

I rang the specialised centre that does them and they insisted that it was done before the radiotherapy began so the race was on because the only day they offered was the following day.  The complication was that the centre is around 20km from our home and I needed someone to drive me there and back not just once but twice the next day.

So I called friends and was lucky enough to find two good people that were free and able to drive me, wait and drive me home again.  So first visit to the centre was to be injected with a radioactive substance.  I am practised in my 'needle' speech now and the doctor promised I wouldn't feel a thing as they used baby needles.  And just for once, I didn't feel anything and they were telling the truth!  Hurrah.  I asked for some clarification as to why exactly I was doing this test and the doctor told me that it was to check that there was no metastases from the original cancer and that there were no other cancers in the bones. She explained that it was important to do this test before the radiotherapy because the protocol would have to change if they found anything on that day (ie chemotherapy would replace the radiotherapy).

So this test suddenly became, in my head, much more important than I had thought.

I spent a few hours at home and reassuring Z picked me up and we headed on out to the centre again for the scan which was pretty scary.  I could keep my clothes on (this was already a good thing, however).  I lay down on the platform which was was going to go into a tunnel with a camera which came very close to the body, almost touching so I would be totally enclosed in a very small space and not able to move for 15 minutes.  Just before the assistant left me on my own in the room after explaining what would happen, he suggested I closed my eyes.  This was excellent advice.

So I closed my eyes and felt the bed moving forward and the feeling of the space getting smaller.  In fact the camera was so close to my body that when I breathed, my ribs touched the camera and it retracted.  So glad not to have my eyes open!  I kept my eyes firmly closed and imagined that I was lying down in a small boat on a turquoise sea under the shining sun and I stayed there until the guy told me the test was over and was surprised to see that the bed had come out of the tunnel already.

I was told to go into the waiting area and see the receptionist where I received an envelope with my results.  I went to see my friend who was patiently waiting and we both looked at the envelope and didn't know what to do.  I was thinking if the results were ok then they wouldn't need to explain them to me but we wondered if they were so bad then they wanted my oncologist to explain them to me.  We were stumped as to whether we should open it or not.  There were doctors about and we thought maybe we should ask them.  In the end I just opened the envelope and we both read the results' conclusion together.  Nothing had been detected - no other cancers and no metastases.  Tears came to my eyes and I sighed a big sigh of relief, well we both did.  What a horribly stressful day but it ended well with the best results possible.  We drove home with a lighter heart but feeling a bit like I'd been on a roller coaster today.

That was a particuarly difficult week, I was glad to see the back of it.

métastases

métastases

métastases

Back in hospital

The appointment I've been fretting over arrived today.  I have been so weepy and scared about this, not sure why really but it was a fear of the unknown I think.

I was planning to work after the appointment but I learnt that I had to do a scan as well so I when I asked my colleague to look in to my class just in case I was running late, he offered immediately to take the class for me.  I felt a huge relief actually.  The kindness continues......

A rainy, dull day didn't help, neither did the 20 mins it took us to find a parking space.  Neither did the dreadful hospital signage.  Neither did the inaudible receptionist behind a thick glass panel who greeted us.  Neither did the lack of instruction regarding the admissions procedure.  Neither did the 15 minute tour of all the hospital buildings looking for the right place.  Neither did the busy nurse who offered to show us the way who then made phone calls, delivered results and spoke to workmen whilst we waited for her.  Neither did the room on the right greeting you as you enter the cancer wing full of people in armchairs receiving chemotherapy.  Neither did the lack of receptionist nor the nurses who said hello but didn't have time to ask why we were there.

You get the picture we were stressed me and dh.  I was ready to leave at this point.  I was definitely ready to burst into tears.

I was seen fairly swiftly, however, after finding someone who wasn't too busy to speak.

A pretty, smiling radiologist greeted me and ushered me into a cubicle where she took me, in great detail, what was going to happen today.  She answered my questions as if I was the first time she'd heard them, she smiled and she was very very kind and open.

We discussed timing.  I had to give her a time slot of a few hours (or one hour the days I was working) and she would then work out suitable appointment times.  That day I would pass through a scanner but I would not be injected (big sigh of relief) but I would be tattooed so the machine could be set in the same position each time.  I had heard that the tattoos were blue in UK and in US, some are brown in France.  Mine are black.  They were done just between my breasts and on the side of my left breast and they really bloody hurt!  I was promised by Smiling Lady that the result would be smaller than a beauty spot.  I was doubtful because medical professionals lie don't they?  But in fact she was telling me the truth, I saw the next day that the spot is actually quite hard to find.

Patrice, my oncologist, popped his head round the door and asked me how I was 'stressed' was the answer.  He said isn't there a pill for that?  Or meditation?  I said there were situations that were surpassed even by the sophrologie!  He then said 'oh yes it's really going to hurt today, she's going to hurt you bad, she's horrible this one'.  The Smiling lady continued to smile and shake her head. 

I was scanned and have an appointment to return next week to be placed correctly on the machine - Smiling Lady showed me a photo of the machine, explained what happens during a session down to where I would get undressed, what happens next and so on. I will start radiotherapie next Thursday.  33 sessions, every day apart from weekends, will take me through Christmas and just into 2014.

Breathing a sigh of relief we left the hospital and dh took me out for a lovely tagine.  Then because I didn't work I was free to have lunch with dh, which was really lovely after all that stress.  Then I went home and slept.  Ouf.

Snap happy surgeon

Monday was the first time I'd seen the surgeon for 2 weeks.  The daily nurses have been busy scratching away at my nipple scabs so I was hoping he'd approve the progress and not have to cut and scrape again today.  He was happy with the progress.  The left is almost healed although it bleeds a bit.  The right is still an open wound but the flesh has grown higher nearly up to the level of the rest.  He explained that the wound would scab and heal over so the nipple has a pinched effect.  Not perfect, not as beautiful as it was, not normal and annoying since this side is the side that was not affected by the cancer, so another price to pay.

I know, a relatively small price, but nonetheless.  He can maybe do something surgical one day to improve the look.

He took some more photos with his iphone (not my face!)

He said how do you like the breasts because I think they are not bad, maybe they are too small for your liking though - question mark.  I said well to be honest I haven't looked at them yet but I am  just looking forward to the augmentation a year after the radiotherapie has finished.  He was shocked and said that I should be looking at them now.  I explained that I didn't want to because although I respected his work, it was my body and I didn't want to look at it.  He immediately sprung into action and said ok , let me show you the photos, I said nononononono then he changed tack and said why don't I show you some pictures of someone else who had the same thing and you tell me what you think?  At this point I was lying down waiting for the compresses so he kinda put his phone in my face and said well what do you think?

He's not a smart as he thought because my distinctive Baccarat necklace was on the body in the picture so unless someone had stolen my necklace, it was obviously me.  I just said yes well it's me.  He said 'and?'  I just shrugged my shoulders.  He said again that I really ought to look myself.

I'm not sure how I feel about his approach.  I sort of expected some kind of pressure from him and if I hadn't been wearing my necklace his trick might have worked and I would have said something polite about 'someone elses' breasts.  But I also think he should have respected my wishes and not been so maladroit.  Still, I didn't really look although I did see that the lower body just under the breasts looked smaller than I thought my body would look so maybe his trick worked (a bit) but I'm not looking myself.

I saw the psychologist in the afternoon, not the listening blonde but the unexpressive brunette - she works for our town in the psychology service which is free for residents.  I've seen her a few times now. 

It was a positive session because I really talked and cried and cried a lot afterwards.  I did admit that not seeing my full body was the only thing I could control in a situation that, since August, I have had virtually no control over, so I was pretty miffed about the pressure today from the surgeon; she thought it was a bit out of order (well I gathered that by her frown and raised eyebrows which is the nearest she gets to emotion), but she did make the point that perhaps I was imagining worse things than the actual situation so if I looked I might be relieved.  It was good to see her that day; I was very tense about the meeting the next day.  I also explained that so many people are saying to me 'oh the radiotherapie, it's nothing, no problem, it's just lying there, you're not going to lose your hair'.  She thought that, next to the chemo, for which there's very obvious side effects, the radiotherapie had hidden side effects and is also much less harsh than the chemo.  It also means that the cancer has probably not spread so in itself, it's a therapy that means that my situation is considered less extreme than many others, so it is truly something to be grateful for.  But in itself as a therapy, it is not nothing, nor easy, nor just lying there, it has it's own side effects and it's simply a much less intrusive therapy, but a therapy nontheless.

btw dh thinks that the surgeon is right and did the right thing encouraging me to look.

The Fear

You know what's the worst thing about cancer?  Apart from the cutting up of the body and the rays and the drugs and the tests and the aftermath and the permanent physical changes?  It's the fear.

It's the fear of the unknown that keeps you up crying in your bed at 4am.

It's the fear when you're due to take a test the next day and you don't know how much it's going to hurt or what you'll have to do or how embarassing it will be.

It's the fear of going into hospital and knowing that your body will be changed for ever and will never be the same.

It's the fear of the test results, even a simple test.

It's the fear of showing your new body to the world and the fear of being judged for it.

It's the fear that people will know you're ill or notice the change in your body but not have the words to talk to you about it and then talk behind your back about you.

It's the fear of starting a long intense treatment and not knowing how it's going to affect you.

It's the fear of worse news to come.

It's the fear that your children won't have a Mum anymore.

It's the fear of a long battle that you just don't feel up to.

It's the fear that you will always be looking over your shoulder.

It's the fear that you will never forget.

It's the fear that it'll come back and all you've been through will be for nothing because it will be back in a different place and you won't know about it unti it's too late.

It's the fear of never really feeling back 'in' the world again, feeling disassociated, distant, not really there, not part of it all, being a spectator or an observer and the fear that you'll never  really feel like you're 'there' again.

It's the fear of seeing those people 'worse off than yourself' and instead of feeling grateful that yours is just a 'little manegeable cancer' that one day you will be treading the same path as them.

It's the fear that despite all the efforts of the doctors, there are cells that are right this minute multiplying inside you bringing you bad things.

It's not the death that's frightening, it's the slow downward steps towards it.  Death by cancer is not pretty - I've seen it before, many many people have seen it before.

It's like you're standing at the top of cold stone stairs leading down to a black, cold fast runnning river.  Normally you'd just be walking by those steps looking down thinking 'oh that looks dangerous and slippy, take care and you warn your children away from them.  But then cancer takes you to the top of the stairs and forces you down the first one and sometimes you go down one or two stairs and you spend some time on each one sitting, watching the black water that's just a little bit nearer.  Then little by little you have to go down the stairs and your feet get wet, then your legs, your body, your shoulders when finally your head is under and you're swept away.  And all the time you know what's happening and you don't want it to happen but you're forced to participate and to descend even though every part of your brain tells you that you don't want to be there.  And even if you're cyring and screaming and kicking, you have to go down.

Sometimes people are lucky enough to be able to go back up a step, maybe two or three, but they will always be somewhere on the staircase, where normal people don't have to go, looking at the water.

Sometimes it's just easier to dive straight into the water.