ITW n°35: Catherine - K fighter.
The wonderful Catherine Cerisey, ex K fighteuse du Sein, blogger since October 2009, from the blog: http://catherinecerisey.wordpress.com
Hello,
Today the wonderful Catherine, whom many of you probably already know, tells us about her battle against her Breast K, (in "complete remission since 2008").
Catherine is one of those precious encounters that life throws your way, the ones that we don't forget, we want our discussions to last for hours; an amazing, funny, committed, sincere, spontaneous and elegant woman (a perfect mix), I am very happy to introduce her to you, for those who did not yet have the privilege of knowing her ;)
Let's get started:
Who are you ?
First name: Catherine
Age: 52
Blogger since October 2009
Where do you live: Parisian suburbs
Why do you agree to share your story today?
a nice lunch, a nice meeting, a discussion that goes on forever, the desire to play the game...
What are your qualities (in a few words)?
I should rather ask those around me.
What are your passions (in a few words)?
My engagement
What K (what cancer - grade if you wish / stage ditto):
Hormone-dependent breast cancer
When was it discovered? How old were you ?
on December 10, 2000. I was 37 years old.
Under what circumstances was it discovered?
In the shower I felt a small lump under my armpit. Gynecology, mammo, ultrasound, biopsy, everything comes back negative. My doctor insists on removing it anyway. Tumor analysis: cancer.
If you are currently undergoing treatment, or in remission (for how long?)
total remission since 2008.
Can you summarize your (K fighter) story for us ?
So following the diagnosis, I went to see two different doctors from two large Parisian centers: one recommended a lumpectomy (according to him it was a “small” cancer), the other a mastectomy. I chose the second solution which seemed more “secure” to me and also the second oncologist who was infinitely more empathetic! (I actually did well: the first one was wrong since it turned out that I had three tumors in the same breast)! So operation then 12 chemotherapies and I opted for reconstruction because, unlike many women, I could not imagine remaining an amazon.
Before returning to work in July 2001, during a check-up, I felt a small “grain of sand” under the skin in the armpit. My oncologist tried to reassure me by telling me that it couldn't start again in this place since the lymph node chain had been removed. But I was no longer alive, I consulted my gynecologist, my surgeon, who had the same opinion. In September I still decided to see my oncologist again even though I didn't have an appointment. I went to the hospital and stood around in front of his office until he agreed to see me between two patients. After discussion, I asked him to take away this “grain of sand” which had become a “grain of rice” and this, against everyone's advice. Outpatient lumpectomy: cancer 2! I left for 6 chemos, 5 weeks of radiotherapy and 5 years of hormone therapy. In September 2008, I finished all treatments and have been in total remission ever since.
What treatment did you have?
chemo:
FEC 50 12 sessions then during my relapse Taxotère 6 sessions
radiotherapy:
35 I think over 5 weeks
operation :
Lumpectomy, mastectomy, breast reconstruction and symmetrization, lumpectomy again, and ten years later replacement of the prostheses, i.e. 5 operations.
other: hormonal therapy 5 years
What tips directly related to K do you want to share?
(your feeling with the doctor, your good treatment organization plans, anything that seems useful to you ;))?
For the doctor and the center I want to say, choose them wisely. The center should not be too far from your home, especially if you are having radiotherapy which requires daily return trips. And then, you will spend many years with your oncologist, because cancer requires lifelong checks, the current has to flow! You do not have to endure a doctor who is brutal or who does not take the time to give you the explanations you ask for. You have the right to choose how you want to be cared for. If in doubt, don't hesitate to ask for a second opinion!
1/ chemo: (ex: your tips, the helmet, your affinities with nurses):
I wore the helmet during my 18 chemo treatments despite the reluctance of overwhelmed nursing staff who were reluctant to change it as often as necessary (it heats up quickly). I haven't lost my hair, at least not enough to have to wear a wig. I didn't give up and harassed them, even if it meant making me seem like a pain in the ass.
The headset doesn't work every time, but it's worth a try. It must be applied carefully before the infusion, ideally on wet hair, then change it every 20 minutes and keep it on for a little while afterwards. Bring a shawl or blanket (it's cold) and a towel (it's dripping)!
Be careful, some protocols cause alopecia (cause hair loss) whatever you do.
The same goes for the nails, there are refrigerated mittens that protect them. Don’t hesitate to ask your team.
During long sessions (3 to 4 hours) bring books, music, films, laptop or tablets (with charger), ... in short, something else to think about. In my time I didn't have the chance to benefit from the solidarity of social networks. 3 hours of chemo is an opportunity to chat with your virtual friends!
During the last session I brought champagne to the nurses who I had annoyed so much to celebrate the keel!
How did you live the day before, the same day, the days after chemo?
and what were your tips?
My protocol was painful because I had two chemos 8 days apart then three weeks of rest (this protocol no longer exists to my knowledge today). The first salvo brought me to my knees and the second 8 days later finished me off for good. I went there of course, more and more reluctantly and most of the time planned for someone to take care of my young children that same evening or when I was alone, a dinner for them on the go, cold if not possible, so easy to prepare just in case.
I would advise being cocooned (when you can), helping (again if possible), resting ++++, and going out and clearing your mind when you have the courage between two treatments. The house can stay upside down for a few days, it doesn't matter. You have to protect yourself as much as possible, listen to yourself and not feel guilty !
2/ hospital: (e.g. contact with nurses / doc / caregivers):
Take a small shoulder bag without closure in your suitcase to put the donation pocket in, which will allow you to walk around as soon as you can get up and not be confined to the hospital bed.
Bring comfortable night clothes that open in the front (Avoid those that are put on over the head) because in the event of a lymph node dissection, raising your arm can be painful.
Bring large t-shirts for the outing to help hide the asymmetry in the event of a mastectomy. In fact, nurses or certain associations provide a foam prosthesis to slip into your bra before you can wear the silicone one. But this is not the case in all centers.
If you are not prescribed one straight away, ask for physiotherapy sessions to quickly recover the mobility of your arm and massage the scar, which will prevent adhesions and prepare the breast for possible reconstruction.
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
At the time, it was little talked about and patients did it on the sly without telling the doctors. Today we recommend doing appropriate physical activity which, contrary to popular belief, is an excellent, if not the only, remedy for fatigue. Ask your center or an association near you for more information.
Be careful during acupuncture not to prick the operated arm. The same goes for fire cutters, if the patients who have done it favor them, I have met certain doctors who think that it could be dangerous: according to them, if the technique really “cuts the fire” it does not. not only on the surface and could annihilate the effect of the rays. Finally, herbal medicine is not trivial and can even be very active. You should always ask your oncologist before taking or doing anything.
As for me, I did reiki during my chemo but I can't say if it did me any good, probably I would say because those were moments just for me.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
Pff not much, I admit that I was overcome with fear and drunk with fatigue. I took care of my children as much as possible and made the most of them whenever the side effects gave me a moment's respite.
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
Answer:
Opaque varnish to use for certain chemo treatments.
Hydrate as much as possible with products sold in pharmacies. There are some very good brands and my little finger told me that we would soon find boxes on your site which will quickly become essential!
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
I used artifices to hide my asymmetry which I never accepted and never showed except to my husband. So prosthesis in a suitable bra. I have always tried to wear makeup and dress to look as “normal” as possible. I think I went unnoticed by the people I passed in the street, but I was lucky enough not to lose my hair so it was easier.
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
As I said above, no sport because at the time we didn't talk about it. I read a lot of books about cancer and surf the internet. No special diet, except that I was careful not to eat salty foods (because of the cortisone). It's already difficult to endure the treatments, I think you have to indulge yourself within reason. The pounds gained during chemo are not easy to lose afterwards!
4/ hair problem (eg: did you wear a wig, scarves, hats)
I haven't lost my hair so no. However, no dye, no hair dryer and mild shampoo (not baby shampoos which are not suitable).
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
I think I didn't care about how others looked at me. It was especially for my children, towards their classmates. I didn't want them to suffer from having a mother who looked sick. I made efforts for them and I anticipated the loss of hair by talking about it to their respective mistresses. We had planned for me to come and talk about it in front of the class in order to answer questions from their classmates.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
Many but I kept one in mind. I had resumed sport after the treatments, however I had not yet returned to work and “friends” told me “you are capable of doing sport so you can work!” It’s because of people like you that our children won’t have social security.” Nice, right?
How did your loved ones support you?
My husband was very present and helped me a lot. My father accompanied me to almost all of my chemos and exams, he had had cancer a few years before and knew what I was going through. My mother supported me a lot in daily tasks. So I was very surrounded by family.
On the other hand, I lost a lot of friends but gained others. Some loved ones have left, and people I wouldn't have put a cent on have been there for me. Some people know how to find the words, others, because they are afraid, because they are projecting themselves, because they don't know what to say and fear being clumsy, prefer to move away. It's complicated and today the anger has subsided and I understand their attitude better. But at the time it was very painful.
And what advice could you give to loved ones who accompany a K fighter?
Listen to the needs of the sick person: do not project what you would like someone to do for you but be attentive to what THEY want.
Be forgiving: being sick is difficult and we are sometimes annoying if not downright boring.
You do not know what to do ? Opt for concrete help (shopping, childcare, homework, meal preparation, etc.) in short, anything that can provide relief.
You don't dare or don't know what to say: sometimes the silences, simply being there is enough.
And if it's beyond your strength, a text message, an email, a bouquet of flowers on the doormat... So many touches that are nice and say “I'm thinking of you”. Finally and I want to say above all: think of yourself too. I have a psychologist friend who used to say, “ you have to breathe to avoid running out of breath .” Helping is difficult, you have to make time for yourself too: outings, sports.... It doesn't matter! Cancer is a long-distance race, the important thing is also to recharge your batteries to continue to be able to help over time.
Do you find out about K on the internet?
At the time the internet was in its infancy and there were few forums and no blogs. Well, social networks like Facebook were science fiction!
I spent my time browsing information sites which in 2000 were much less well done than now because it was essential for me to find out, to understand, to take ownership of things and to be an actress. of my care. I also met women via the Cancer League forum which was the only one accessible 15 years ago.
If so, does it make you feel good?
Of course ! As I said in my previous answer, it is important to be informed because a well-informed patient is a better-treated patient. Meeting combat sisters helped me a lot too.
Beyond institutional sites, social media (social networks, blogs, etc.) are mines of information that come from peers, other patients who have already been there and have acquired expertise linked to their personal experience. And your blog is an excellent example, I am sure that patients are delighted to find tips and advice here that they could not find elsewhere on more traditional sites.
And then the “chains of solidarity” woven on the canvas are very precious. The web does not isolate, it brings people together!
If so, what would be the useful (internet) links that helped you during K?
Difficult to answer exhaustively. There are plenty. You just need to pay attention to several things:
Find out about the author of the site (institution, doctor, patient, association, journalist, etc.)
Check the date of the article: in health things change quickly and an article from 2010 no longer necessarily gives the right information.
Check the sources, a good article must include references and active links to the sites in question.
Finally, cross-check the information and find out if others are giving the same information: if information is reliable, it is necessarily found on several sites.
As for social media, surf the blogs, they are fascinating, on Facebook the cancer groups and pages allow you to meet other patients in the same way as the forums and finally Twitter allows you to follow health news but also to exchange with people. professionals.
What has the K changed in your life...?
(for example: your vision of the world, your priorities, your essentials, refocusing those around you, in your work, your philosophy..?)
Everything has changed in my life. To say that Cancer allows us to put things into perspective is a cliché. But it’s true of course. I must admit that for several years, I have reacted as before and gotten angry over unimportant stupid things. In short, I can't always sort things out. It's ultimately very positive and probably a sign that I'm cured J.
But cancer and especially the blog have been a wonderful bridge. The blog allowed me to meet lots of people who taught me a lot, patients, professionals... with whom I interact every day and who nourish my thinking. I am completely involved in defending patients' rights, I campaign for their involvement in their care journey but also in health policies. The patient must be an actor, we hear it everywhere but it must not be an empty word and we must give him the possibility and the tools to do so. In the same way that therapeutic decisions must be made in consultation with him in a decision-making process shared with professionals, political decisions cannot be made without the main stakeholders.
Free field ;)
tell us what you want (which might not be in my questions):
I think I've already opened up a lot in your interview ;).
To find out more, find me on my blog “After my breast cancer” http://catherinecerisey.wordpress.com
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Thank you Catherine, see you soon over a drink or a homemade dinner ;)
Now if you wish, send me your testimony and your photos (so that I can illustrate it), by email to: interview@mister-k-fighting-kit.com
Lots of nice positive thoughts
See you soon
Charlotte
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