Post 10: Glossary on Mister K...
GLOSSARY: Cancer for the uninitiated....
It was while talking over the past few days with those close to me that the idea for this post came to me, I realized that many terms were not easy to grasp for those uninitiated in K , whereas as an old driver it always seems clear to me... But no! Fortunately for them, that's far from being the case ;) so I told myself that this post was quite Urgent! (see you next Friday for the “well-being/alternative medicine” care tips kit currently being refined)
This post is therefore a small glossary of terms often mentioned during the Cancer battle for loved ones & K fighters of course (well the terms that were repeated to me during my K - because we always talk better about what we know ;)), you will find here, my version / definition / analysis of all these sometimes "lunar" words that I ended up capturing :)
So, follow below, and don't go looking on Doctissimo so as not to get freaked out!!!
GLOSSARY of Mister K:
A/ the most rehashed
Oncologist / Oncology:
This is the new term for cancerology, or oncologist. Basically, it is the doctor who will follow you the most during the K course (during & after). You will see him very, very often, so it is better to choose the one with whom the feeling matches well, because he will follow you for a long time.
The oncologist is a bit like your General Practitioner in every sense of the word, his main role is first of all to target the cocktail(s) most suited to your K, and to measure the effects throughout. of the course, he's a bit like Mister Magic Potion, a priori you can talk to him about everything, he will sometimes even be a bit like your shrink, he will manage the side effects, basically he's a bit like Superman during and after K. For me, Doc L was a bit like my confidant, he was the one who reassured me during each period of doubt during the K and still today :) THANK YOU Doc L; despite everything, Mom & I were lucky to cross your path, because even if it wasn't Rose every day, you made my battle easier at every moment...
Pack / Catheter / PORT-A-CATH/ implantable port
So that's one of the words that people close to you struggle with the most when they're not initiated, I don't really know what they're imagining haha: basically, it's just a plastic box surrounded by silicone , approximately 2cm in circumference, which is placed under the skin before starting chemo. In short, it is the box connected to a vein or artery I believe through which all your cocktails will be injected (see Post 3: chemo day & Post 4 chemo day ), the box acts as an injectable chamber (sterile), for filter and distribute the chemos so as not to alter your veins. A priori we are not supposed to feel it, but that's personal, some people can't stand it... I didn't feel it, I even forgot it!
The famous chemo! There we can make a whole area! But I will try to keep it short. First of all, for those who are not on a date at all, we are not in a Star Trek (or MRI) type box. Chemo is the term used to say that you are given an infusion connected to Mister Pack , to inject the famous chemo cocktails which must kill the bad cells / tumors / carcinomatosis. We are not in this “lunar” box isolated from the natural world! I was comfortably seated in an armchair with my device connected to my Mister Pack , waiting for the products to diffuse into my body ;)
(I didn't have one but Mom told me), obviously she was in a room, a bit limp, and for 5 weeks she had 1 5 min radiation session every day, I I deduced that it was laser rays targeted/directed on the area to be treated (but I don't mean anything)
It is the "pathological" examination, which I believe allows, from the biopsies, to define the Stage & Grade of your K (see below) - you have to be patient for the results, it can be long (count 2 or 3 weeks)...
It's not a football stadium! When we tell you about Cancer, we talk to you about the Stage & Grade, the Stage: from what I understood it is the extent of the damage, the lower the Stage the less advanced it is in extent, I for example I had a stage 3 (the scale is from 0 to 4 I think - see: Post 1 & Post 2 to know my K)
The Grade is, let's say, the degree or level of evolution, or the “marker” identifying the scale of propagation, me grade 1: low grade with slow progression (I think there are 3 grades).
These are, I believe, the indicators in the blood (blood test), of your K, for me (ovarian cancer) the marker was called CA125, I can tell you that this one I followed and still follow at the time. magnifying glass !
PET Scan / Pet Scan:
It's THE Cancer exam, we all know the sweet names of scanner, MRI, Echo, but Tep Scan or Pet Scan (no one agrees on the right name depending on the hospital), it's THE exam that K fighters fear, yet it's physically the same thing as the Scanner: you enter a tube and it targets all the micro particles that the K could have reached... I admit it's a bit of a cursed exam, especially since it lasts for ages (allow a good 3 hours between the injection of the radioactive product> you become a glow worm, 1 hour for the body to ingest it, 30/40 min in the tube, where you are put under a microscope and 1 good hour and a half of waiting for the results), and the really annoying thing is that we have the right to do NOTHING (like we are entering a radioactive zone: no telephone, no reading, NOTHING, you have to be lying down) so you have to sleep for the injection to work, be patient...
It's an inflammation of the mucous membranes (charming), it's a bit like canker sores (see Post 6 on my cocktails to find out how I treated them), I had some on my gums, it formed like a white plaque ... ESPECIALLY DO NOT TYPE MUCITIS ON GOOGLE IMAGE!!! WARNING!! Trust me ;)
B/ Dedication to LPJ: “jobs that we don’t understand…”
As in the section of the “Petit Journal” on Canal + , there are “jobs that we don’t understand” but unlike the LPJ , once we have seen it, we understand during the K!
Service providers :
They are the essential link to have if you receive home care, they take care of deliveries of all medical equipment / and medications / nutrition bags & co at home, super practical, it's the same principle as when you order your shoes on Zalando , except that we don't scream Happiness when it arrives, because it takes up a lot of space; I wanted everything to be hidden behind my curtains so that I could only see them when I was using them, but when you live in a small apartment you have to have imagination to hide everything ;)
When I was told about this, (forgive me if I offend people whose profession it is, it's not my intention), but my first intuition was the same as when the new Government created lots of new ministries with improbable functions, at first glance it is difficult to imagine the function & the interest. But once you get the hang of it, it's pretty great (I'm talking about socio-beauticians ;)), because they exercise their talents in the hospital, and are full of great advice to guide you in your desires for “well-being ” during the K, basically give you beauty tips & co ;)
Care by IDE at home:
Well... the brave nurses (#mesbonnesfées), it's just the term for “state home nurse” when reading the prescription we expect yet another bizarre product
C/ Operations / home care
Parenteral nutrition/nutrition bag:
This part is variable, once again I'm talking about my K ;), as I had lost a lot of weight, I had to restart the machine, so as my classic diet was not enough, I was fed extra through a bag that delivered to me via the famous Mister Pack , full of good nutrients / vitamins / the “ junk food ” bag as Dad called it (but the food was far from being junk ;)) – I was hooked to this bag every evening for 4 months (and a great team of nurses removed it for me in the morning), I gradually gained weight and my cheeks were all rosy!
I haven't had one but I believe that for breast K, it is important to do draining massages after removal of the breast/arm lymph nodes, to get the lymph circulating well, as the lymph nodes are no longer there to do it ;)
It's a procedure, thanks to which we don't open you, we create small orifices, through which 1) my stomach was inflated, 2) we pass hyper-sophisticated mini cameras to target the area to be reached 3 ) with mini tools we tinker with the problem, this is clearly the operating method that I prefer, because the scars are small, and we recover very very quickly, I left the hospital after 24 hours and counted 3 days to be upright :)
It just means that we open your stomach vertically I think... oops (I had 3... yum)
At first it's frustrating, but in fact it's “cool”, after a major operation we can put you in intensive care for a few days, it's a hospital service where nurses are in your care every hour to check if everything is fine :), it's quite noisy because we're connected to 50 beeping machines, but we feel safe there because we're hyper at the slightest warning, just don't forget the earplugs ;)
D/ Medical equipment / extras after operation
When you have stomach surgery for example, I believe you are always fitted with a gastric tube: it is a tube connected to your nose which passes through the larynx, to release the gastric fluid while your transit gets back on track. (I’ll spare you the bad pun)
After certain operations we put drains on you to extract the lymphatic fluid, well it's yet another pipe/bag connected to your body, we leave it for a few days depending on the operation, no need for a handbag, sometimes at the hospital we have 6 bags available (and here I'll spare you the "drain will whistle 3 times"..)
I hope I was able to enlighten you in the most "light" but clear & objective way possible, those for whom it could be useful :)
See you next Friday for care tips alongside “ Well Being” & alternative medicine during K.
Thank you for taking the time to read me.
See you soon
PS: if you are also a K fighter , you are discovering my blog for the first time and you need other practical tips, I invite you to go to the section: TIP KIT
Or read previous posts:
- Post 3: CHEMO WATCH KIT
- Post 4: D-DAY & AFTER CHEMO KIT
- Post 6: KIT OF THE EFFECTS OF MY CHEMO COCKTAILS (Carboplatin / Taxol / Avastin)
- Post 7: HAIR OBSESSION KIT
- Post 8: BEAUTY TRICKS KIT
- Post 9: The Look match during the K
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GLOSSARY: Cancer for non-initiated....
It's by discussing with some of friends that the idea of this post came up , I realized that most of the wording isn't easy to understand for the uninitiated to the K , so as a person that has been to used to those ones, it felt clear but No ;-)! Thank god for them that it isn't the case so I felt that this post was kind of urgent!
This post is a little glossary of a wording very often used during the battle against Cancer for the friends and for the K fighters of course (most importantly the vocabulary that I would hear all the time during MY K - always easier to speak about something we know :)) you will find here, my version / definition / analysis of all those words sometimes “lunar” that i managed to get.
So follow and read, and please do not google, to avoid to freak out !!!
GLOSSARY of Mister K:
A/ the most heard
Oncologist / Oncology :
This is the new term for a cancer specialist. In the big picture, it will be THE doctor that will follow up on you during your battle of the K (during & after). You will see him very very often, so better choose someone that you get along with, as he will be with you for a long time.
The oncologist, is a bit your general doctor in all the ways, his main task is first to target the cocktail or cocktails the most adapted to your K, and to follow up on the treatment during the fight, it's a bit your Mister Harry Potter , normally you will tell him everything, he can even sometimes be your psychologist. He will handle the unexpected illness, it's a bit the Superman during and after the K. For me Doctor L, was my confidant, the one who reassured me during all the moments of doubts and stress and he still does it today Thank your Doctor L.; We are grateful with Mum that we were fortunate to meet his road, even though it wasn't pretty nor easy everyday, you helped to make it easier…
Pack / Catheter / pickable room
So this is usually one of the words that is hard for the uninitiated, i don't really know what they expect nor imagine haha: ir's like a plastic box wrapped in silicon, 2 cm of circumference, that they install underneath the skin before starting the chemos. To summarize, it's a box linked to a vein or artery and through this they will be able to inject the cocktails (see Post 3: CHEMO's eve & Post 4: day after ), the box is a like a pickable sterile room, to filter and diffuse the chemo without destroying your veins. Normally you aren't supposed to feel it, but that depends on the person, some people cannot stand it…I didn't feel it, i even forgot it sometimes!
The famous chemo! Here we can write a trilogy! But i will try to be short. Already for those that aren't all aware, we aren't put it in a box like Star Treck (or MRI) . Chemo is the term used to say that they will give you a drip through Mister Pack , to inject the famous chemo cocktails that have to kill all the bad cells/tumor. We aren't in this “lunar” box isolated from the world! Me i was comfortably seated in a nice armchair with my drip connected to my Mister Pack , waiting patiently that the products would spread in my body.
(I didn't have any but mum shared her story with me), she would be in a room, a bit like a box, and she had during 5 weeks 1 X-RAY session of 5 minutes each day, so i came to the conclusion that I was radiation targeting her zone to cure (but maybe I'm wrong)
It's the “pathological” exam, that helps to define the stage & level of your K (see below) - you have to be patient for the results it can be look (count 2 to 3 weeks)…
It is not a concert stage! When they announce that you have Cancer, they quickly speak about Stage and Level, Stage: from what I understood is how important it is, the lower the stage the smaller it is, me for example I had stage 3 (it goes from 0 to 4) See Post 1 & Post 2 to understand my K)
The Level, it's let's day the degree of evolution, so the identifying “marker” presenting “the spreading”, me i was level 1: so low lever with a slow evolution (there are 3 levels).
It is the indicators in the blood (from the blood test) of your K, for me (ovarian cancer) the marker's name was CA125, i can tell you that i never forgot that was, and i never let him outside of my sight!
PET Scan / Pet Scan:
It is THE exam for Cancer, we all know the soft names, MRI, Echo, but Tep Scan or Pet Scan (no one is never sure which is the right name at the hospital), it is the exam K fighters are scared about, however physically it is the same as a scan: you enter a tube and it targets all the little particles that the K got have touched…I have to be honest it is the worst exam because it lasts hours (count 3 hours for the injection, 30/40 minutes in the tube and 1 hour and a half to get the results) and the worst part is that you aren't allowed to move nor to do anything (it is like being in a radioactive room: no phone, no book , NOTHING, just lay) so the best is to sleep for it to process….
It is an inflammation of the mucus (charming) it is a bit like having mouth ulcers (see Post 6 about my cocktails to know how I would treat it) I would have it on the Gum, it would be like a white patch…
MOST IMPORTANTLY DO NOT SEARCH FOR THIS ON GOOGLE IMAGE!!! WARNING!! Trust me.
B/ The job "names" I don't understand...
They are the persons you need if you will receive home treatment, they take care of shipping the materials / medicines/ & co at home, very practical, it is exactly the same thing as ordering shoes on Zalando , the only difference remains in the fact that you don't scream of happiness when the delivery guy comes, because it takes a lot of space, I wanted it all to be hidden behind my curtains so that i would only see it when i would use it, but when you leave in a small apartment you need to use your imagination to hide it all.
When I first heard about it, (sorry if I offend the persons who have this a job) but my first intuition was the same as when the French government created all this new departments but undoable / unbelievable positions, you just don't get it . But once you understand it is clearly amazing (i am of course talking about the social beauticians ;)), because they practice in a hospital, and have a lot of good tips to share and to help you feel better during the K, in the big pictures they give you beauty tips & co.
Treatments by NAT at home:Well the brave Nurses…( #myangels), it is just the wording used to say “nurses at home” and when you see it written on the prescription you are just expecting another weird medicine.
C/ Surgeries / Treatments at home
This one isn't for everyone, here again I am talking about my K ;), as I had lost a lot of weight, we had to get the engine started again, so as my normal nutrition wasn't enough, i was also fed by a pocket that they would connect through Mister Pack , a lot of good nutrients/vitamins / the pocket of “junk food” like dad would call it (but the food was far from junk ;)) – I was connected to this pocket every night during 4 months (and a great team of nurses would take it off in the morning), I put on weight slowly and my cheeks were all pink!
I didn't have one but I believe that for the K of breast cancer, but I believe that it is important to have purging massage after a removal of the ganglion in the breast / arm, to have a good circulation as the ganglions aren't t there anymore to do it ;)
It is an operating mode, thanks to this one they don't need to open you up, to create small “openings” to 1) had my stomach swollen 2) they put through tiny cameras very sophisticated to touch the target 3) the problem is very quickly fixed, it is the operating mode i prefer, because you can't see the scars and you get back on your feet very quickly, i would get out of the the hospital in 24 hours and it took me 3 days to be on the top of my game :)
Laparotomy:It just means that they open your stomach in a vertical mode…Ooops. (they did it to me 3 times…lucky me)
At the beginning the name of it is scary, but to be honest it is "cool" what's "cool" is that after a big surgery you can be in intensive care, it is a service where the nurses are really taking care and caring about you, they come to check on you every hour to see if everything is ok :), it is kind of noisy as you are connected to 50 machines at the same time, but you feel safe, but just don't forget the Quies; )
D/ The medical instruments / The extras after surgery
When you are operated in the stomach, they insert or at least i believe a gastric probe: it is a pipe inserted in your nose connected to the larynx, to clear out the gastric liquid, it just gives your transit some time to figure it out .
Drain :After some surgeries, they can put some drains to extract the lymphatic liquids, well yes it is one more tube / pocket connected to your body, they leave it a few days depending on the surgery, no handbag needed, sometimes at the hospital you can end up with 6 bags at your disposal. I hope i managed to explain those words/expression in the “lightest” way as possible, for those who needed it.
Next post " Healthy treatments" & side care treatments during the K.
See u very soon
PS: if you are also a K fighter , you are discovering my blog for the first time and you need other practical tips, I invite you to go to the section: TIP KIT
Read my former posts:
- Post 3: CHEMO’S EVE
- Post 4: CHEMO'S KIT DAY AFTER
- Post 6: "HAPPY HOUR" CHEMO'S COCKTAILS EFFECT
- Post 7: KHAIR OBSESSION
- Post 8: BEAUTY KIT
- Post 9: THE LOOK DURING THE K
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