ITW n°6: Pascale - K fighter.
First of all, thank you very much for agreeing to share your K's story, it's really courageous and generous of you :)
Let's get started:
Who are you ?
First name: Pascale
Age: 55 years old
Where do you live: Mantes la Jolie
Can you summarize your K fighter story for us ?
Summer 2003 a diagnosis was made: dermatomyositis, a debilitating autoimmune disease that affects the muscles (quadriceps, biceps, triceps, trapezius). After several years of research and doses of cortisones, we “finally” found the cause: Breast Cancer!
The medical profession is "almost relieved", because finally, we know where dermato myositis comes from and by treating the cancer there is every chance of treating dermato myositis. And it was the case!
What K (what cancer - grade if you wish / stage ditto):
Stage 2 breast cancer
When was it discovered? How old were you ?
Discovered at the end of 2007 at the age of 47
Under what circumstances was it discovered?
We had been looking for it since 2003, when dermatomyositis was diagnosed, which in 20% of cases ultimately reveals cancer.
How long have you been in remission?
I finished the treatments in October 2013
What treatment did you have?
chemo: the great classic (3 Flex+3 taxotere)
radiotherapy: 32 sessions
operation: excision of the tumor then plastic surgery with breast symmetrization
What tips directly related to K do you want to share (your feeling with your doctor, your good plans for organizing treatment, anything that seems useful to you ;))?
1/ chemo / treatments :
As soon as I was diagnosed with the genetic disease (dermato myositis), I decided to collaborate with the medical team. I was very active in my illness and I researched a lot about diet , for example.
2/ hospital: nurse / doc / caregiver contact
My surgeon/gynecologist was the man for the job, yelling at me even when my morale was low!
The cancer specialist (oncologist) proved to be much warmer over the months
3/ alternative medicine, if you have done so
I indulged myself with thalassotherapy, foot reflexology, relaxation, walking, etc.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I had drawn up a list of 10 things that would make me happy, such as listening to Italian music, going to the movies every week, taking up a manual activity, etc.
What practical tips can you advise us?
Concerning the look , I have often noticed that ladies position their wig incorrectly and completely neglect the pencil line for the eyebrows... Too bad because it matters a lot!
Since that time, I have discovered tutorials that give advice on arranging your scarves, which is good!
I recommend physical activity because it is scientifically proven that being overweight increases the risk of relapse….
What are the nugget phrases (that you remember) that someone said to you during K and that you could have avoided?
My older brother, talking about the upcoming arrival of my younger brother:
“Eh.. François will come in February, Note you might not be there anymore, …)”
It was Christmas Eve and I had just left the hospital with my drains still on my side...Since then the family atmosphere has been a little chilly ;)
How did your loved ones support you?
And what advice could you give to loved ones who accompany a K fighter?
Well, I fell in love with my physiotherapist during the treatment of dermato myositis and he supported me well for 8 years… We separated in 2013… That’s life…
What would be the useful (internet) links that helped you during K?
During the first years of treatment I didn't know any website, then there was Rose magazine, then the K collective, then many others until your blog recently.
The support groups helped me a little too.
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..?)
I returned to work at a rate of 3 days/week which gives me time to devote myself to other women. I set up the La Note Rose association.
I first started publishing a monthly Newsletter, La Note Rose, then I set up an annual festival “Le Printemps de la Femme”, then recently a Rose March. All this on my Mantais territory.
I should make a website but I don't have the time and I'm not talented enough. I'm still looking for a volunteer....
Free field ;)
tell us what you want (which may not have been in my questions):
We should really put a point of honor on the right to be forgotten, for the reconstruction after Mister K, there is unfortunately still too much co-lateral damage such as the "remainder", the almost impossible loans, the return not easy at work....
We must act !
To follow Pascale's news, I invite you to follow her great Facebook page :)
And here is a preview of its great March Newsletter from La Note Rose:--------- Thank you again Pascale, for your testimony and this beautiful sharing ;) Lots of sweet positive thoughts See you soon Charlotte<:en>
First of all thank you heaps for accepting to share the history of your K, that's very brave and generous of you :)
Who are you?
Where do you live?
Mantes la Jolie
Would you briefly tell us your history as (K fighter)?
During the summer 2003 I was given the diagnosis: dermatomyositis, a disabling autoimmune disease that affects muscles (quadriceps, biceps, triceps, trapezius). After many years of research and doses of cortisone, they “finally” found the cause: breast cancer;
The medical staff was almost relieved as they finally knew where the dermatomyositis came from and because treating the cancer could represent a chance to treat the dermatomyositis. And that was the case!
Which type of K?
Breast cancer stage 2
When were you diagnosed with cancer? How old were you?
I found I had cancer end-2007, I was 47
Under what circumstances was it diagnosed?
We've been looking for it since 2003, when I was diagnosed with dermatomyositis - that in 20% of cases is indicative of a cancer.
Are you under treatment or in remission (since when?)
I ended up treatments in October 2013
Which kind of treatment did you undergo?
Chemo, if that is the case:
the classic (3 Flex+3 Taxoter)
radiotherapy, if that is the case:
surgery, if that is the case (how long have you been hospitalized for:
Tumor exeresis, then plastic surgery with breasts symmetrisation
Is there any trick related with K that you would like to share with us? (your connection with your doctor, your treatment schedule, anything you think is useful ;))?
1/ chemo: the headset, the connection with nurses,
How did you feel the day before, the day of the session and the following days?
And did you have any tricks?
Since I was told I had the general illness (dermatomyositis) I committed myself to collaborating with the medical staff. I've been really actively involved in the course of my disease and I read up a lot on diet, out of example.
2/ hospital: connection with nurses / doctors / caregivers
My surgeon/gynaecologist was The Man, he cheered me up when I felt blue!
The cancerologist became more sympathetic with the passing of the time.
3/ alternative medicine, if any
I enjoyed some thalassotherapy, reflexology, relaxation, some walks...
What did you do to take your mind off / clear your mind (before chemo sessions, surgeries & co)?
I drew up a list of 10 things I enjoyed, like listening to Italian music, going every week to the movies, doing some manual activity, etc….
Is there any practical trick you can advise us?
As looks look, I often noticed women misplacing their wigs or messing up with the brow liner… That's a pity, 'cause it counts a lot!
From that moment on, I scooped some tutorials teaching how to arrange the headscarf… that was a blessing!
I do advice to be physically active, as it is scientifically proven that overweight increases the risk of recurrence….
Has anyone ever told you any tactless blunder during your K that could have been avoided?
My older brother was once talking about our younger brother's imminent visit and was like “François is coming visiting us next February, you may not be there with us”…)
It was Christmas night and I just got out of the hospital with all the drainage in my hips… After that episode my family relaxed a bit ;)
How did your loved ones support you? Is there any piece of advice you would share with the family members of a K fighter?
Well, I fell in love with my physiotherapist during the dermatomyositis treatment and he really supported me for 8 year… We split in 2013… That's life…
Is there any useful website that helped you out during your K?
During the first years of treatment I found out some website, then it was Rose magazine, than the K collective, then heaps of other websites and, lastly, your blog.
Group therapy somehow helped me, too.
Did K change your life…?
I got back working 3 days per week, so I had time to dedicate to other women. I established the association “La Note Rose”.
At first it was a weekly newsletter, La Note Rose, then an annual festival (“Le Printemps de la Femme”), and recently a march (Marche Rose). Everything in the area of Mantes.
I know I should have a website, but I don't have any time and I'm not tech-savvy... I'm always looking for volunteers…….
Thanks again for your testimony and for sharing your K/tricks ;)
See you soon