Post 14: tips, home care kit...
Home care kit (boosting nutrition bag)
During the K , it happens that we need a little extra boost at home, I'm not talking about amphetamine cures to prepare for an event for bionic athletes, but it's just like ;)
In this case in my K , I had the “luck” to experience in addition to the classic chemo treatments at the Clinic, extra “ gift ” treatments at home ( #pleasirdoffre #pleasurerecevoir #quandyenaplusyenaencore ...)
From December 2013 , after THE BIG CLEANING of my K (my big operation “we remove everything”: read my post 2: HISTORY OF MY K ), I had lost a lot of weight (10kg), all the rare muscles that I had & quite a bit of energy… And as Madame Stôme was not really of much help in gaining weight, we had to reboost the machine with bags of “ junk food ” (as Dad called them) : parenteral nutrition in addition to my traditional diet!
But this “discreet” intrusion allowed me to think of the idea that saved my days after CARBOPLATINE; do my anti-nausea treatments at home (see post 6: HAPPY HOUR: CARBO / TAXOL / AVASTIN ), which shows that we can find positive things even in the worst situations!
So I'm going to give you my little tips to make this step a little smoother, even if bringing all the medical equipment home doesn't sound like a dream at first glance, I guarantee that with a little help & good will we can make the path less muddy!
A. ORGA PARENTERAL NUTRITION
(or “junk food” bag > not really junk since it is full of good nutrients, vitamins & co)
1/ NEGOTIATE A SUPER TEAM OF NURSES
As you know I was 27 years old at the time, and therefore the schedules of a young woman not very early to bed / early to rise that go with it...
My first thing was therefore to find, thanks to my oncologist, THE super team who accepted my night owl schedules & my schedule as an inactive minister!
I was lucky enough to meet the wonderful E, F & L who clearly understood my star “whims”, infusing me at 10pm and unplugging the thing at 11:30am! The dream (well almost) rather than: pose at 7 p.m. and take it off at 7 a.m.… usual program less cool for my debauched pace!
Well yes, even while staying locked up at home for 4 months, I had my Dream Team of friends/family over for dinner every evening, so my real dinner had to match well with the pose of my new performance friend! I just had a little break of 30 minutes during my evenings to prepare the beast and then I walked around with my new girlfriend like a docile (but noisy) dog.
2/ MAKE ROOM TO STOW EVERYTHING
Reboosting by performance is super effective but all the gear that the service providers deliver to you ( see post 10: Dico for the uninitiated if you don't know what it is ) takes up a lot of space... if at you, like at home it is not expandable and you do not want to see the medical KIT all day, you will have to show ingenuity ;) for me, everything was hidden behind my sofa and the IV behind one of my curtains, only my neighbors had a “sea view”, in retrospect they must have asked a lot of questions about my apartment (they must have thought of traffic from I don’t know what) but at least during my “free time” my apartment was “normal”!
3/ MANAGING THE NEW PRESENCE / GETTING USED TO THE NOCTURNAL “COIN COIN”
The thing looks like a classic infusion, we leave the needle in the pack and we attach a nutrition bag, which itself is connected to an electrical box to diffuse / dose the flow! The problem is that the machine squeaks, so I advise you to invest in earplugs ;)
The other problem is when you have a “social” dinner at your home and your “hosts” don’t expect to see you accompanied by a performance that goes “ quack quack ”, but with a little humor & playing down the drama, very quickly, everyone gets used to it!
The other problem, but more personal, is if like at home, you have a staircase to access your toilet... well, I won't hide from you that grafted to a perf which weighs a ton with my sparrow strength that complicated a lot of things... But fortunately P. always lovingly dropped me off with the machine at the bottom of the steps, rather practical (but the problem is that the performance is full of good stuff, but I think it has a diuretic effect because we always want to do P…)
4/ NEGOTIATE THE BACKPACK
Unfortunately I didn't have this option until very late, thanks to E, my great competition nurse, there is a sophisticated hyper backpack in which you can plug the pocket and carry around with it like a (ugly) handbag. super practical (just don't put anything in it other than the pocket, it's still quite precious), but this bag was out of stock I only had the pleasure of testing it for 1 month... Too bad I would have loved trying nocturnal expeditions…
5/ ANTI BOBO DRESSING
If like me, you have a perf every day, you will have an ultra sterile needle in the pack, except that if you have very fragile baby skin, after a certain time, the dressing ends up irritating or even tearing the skin, so, still thanks to the incredible E, I discovered THE very soft DRESSING : MEPITEL Film 10.5cm x 12cm from Health Care " soft silicone film dressing, ultra thin, transparent and breathable " and sterile of course, go for it 'buy !!!
- just be careful when showering, you should never soak the dressing in water, so with great caution, go around the area! it must remain 100% dry & sterile
- this dressing is also valid for chemo DAYS ;)
As I said above, the service providers (adorable by the way) deliver a lot of equipment to you, and in particular sometimes much more medication than the prescribed doses, except that when the treatment is finished you have to get rid of it. … But beware ! you must not get rid of them haphazardly: do not give them back the medicines (only the equipment: perf / bag & co) otherwise they throw everything away because once the medicines are delivered it is no longer reusable, do not Do not drop them off at your pharmacy either. Get information from pharmaceutical NGOs or others, because it can be useful to others who need it and who don't have SECU to pay for it... it costs a fortune!!! My Clinic collected everything and sent everything to Africa, think about it ;)
B. AUTO PIQUOUSE
After certain operations (notably those of the stomach), you are prescribed anticoagulant injections, to avoid the risk of phlebitis (charming program), I reassure you these famous injections are nothing at all! The needle is also self-retracting!
I had to do it for 1 month after each operation, so 6 times in total, and I got the hang of it! No need to wait for a nurse at home, all by yourself, it's super easy! If you are comfortable, pass an ice cube on the area to be pricked before injection, it anesthetizes the skin, after the ice cube disinfect and we prick!
To properly prepare your “shooting room”, I invite you to:
1) disinfect your hands
2) disinfect the area to be bitten
3) we stitch, when we hear a click and we no longer see the needle it's finished
4) we redisinfect the bitten area
5) we keep the needle, which we put in an empty bottle
6) when the bottle is full you place it in your pharmacy!
Not to hide anything from you, my injections were at 7 p.m., often the time of my summit meetings in cafes with my Dream Team ( during periods when I could travel ) , so neither seen nor known I rushed to the toilet (without touching anything … yuck) and in my bag I had all the KIT to carry out the “operation”! To show you how easy it is ;)
As seen in my post 11: alternative medicines , which I strongly invite you to reread if you need to, I also had at home:
1) all my scar & muscle reboosting sessions: KINE at home
2) my essential fasciatherapy sessions :)
Here are my few good tips, if like me you have the “immense privilege” of requiring this type of care ;)
And the opportunity to dedicate this post to my famous super team of nurses: E, F & L, thanks to whom, this frankly not super fun time seemed sweeter to me... Despite everything, I was able to keep smile :) thank you for your beautiful energy, your good humor & your availability, you have unknowingly brightened up these days...
See you in 2 weeks, for my post on my tips for optimal organization in the hospital!
And see you Tuesday for a new interview with another K fighter!
Have a nice day everyone
CharlottePS: to follow all my next tips & posts by email,
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Home Care Kit (nutrition pocket…)
Hello,During a Cancer, you could need some extra energy, of course not as cures of amphetamines for a big sporting events. In my Kase, I had the “chance” to take some extra cures at home.
Since December 2013 , after my big operation (read post 2: the Story of my K) , I lost a lot of weight (10kg), all my muscles and my energy…In addition to that, my Stomi pocket didn't help to put on weight, therefore, besides my normal meals, I had to take some extra “junk food” pockets, in order to get some energy.
Thanks to these perfusion, I had the chance to think about what actually saved me after the Carboplatin .
I will give you some good tricks to go through this phase smoothly, even if all the medical stuff could be a bit scary at first sight. But you'll see, a little bit of acid and you'll feel way better.
A. ORGA PARENTHAL NUTRITION
(or junk food pocket, well not that bad actually, they are full of vitamins and co)
1/ FINDING A SUPER NURSE TEAM
As you know , I was 27, so I wasn't very used to going to sleep very early.
I managed to find the right nurses team, who were following my schedule of insomnia.
I had the chance to meet the incredible E, F and L , who clearly understood my star whims: doing the injection at 10 p.m. and turning down the machine at 11:30 a.m., (almost) a dream!
Even if I was stuck at home for 4 months , I had my wonderful team of friends / family for dinner, who visited me every evening. So I had to find the way to organize the injection and the dinners.
I had 30 min of break in my evening to prepare the infusion and then I was stuck to the very noisy machine all the rest of the night.
2/ MAKING SPACE
The infusions were very efficient, but the equipment was so huge that it took a lot of space. Plus my home wasn't very big, so if like me you don't want to see your kit in the middle of the room every day, you'll have to be creative and find a good place to hide the material. At least, during the normal daily life everything was hidden.
3/ MANAGING THE NEW PRESENCE (GETTING USED TO THE NOISE)
The machine was very similar to the perfusion one. You leave the needle in the pack and you link it to the food pocket, which is attached to an electronic box, which is regulating the flux.
One of the problem is that the electronic device makes a lot of noise … I recommend you to invest in earplugs!
The other one is, when you have guest at home, who aren't expecting to hear such a noise, you just have to take it as a joke ☺ and no one will be too bothered!
One last issue, is when you need to go to the bathroom! I had to climb and go down the stairs every time I needed to go to the bathroom. Hopefully my dear P. brought me up and down at any moment. The fact is that the liquids inside the infusion are diuretic…therefore you always want to go to pee.4/ NEGOTIATION A BACKPACK
Unfortunately, I got this option very late, thanks to E, my super nurse. There is a very practical backpack, where you can put all the pockets and go around as it was a simple (very ugly) bag. Unluckily the bag was out of stock when I needed it, so I got to enjoy it for a month.
5/ PLASTERS AGAINST PAINS
When you have an infusion every day and your skin is very delicate, the plaster can irritate your skin and take it away. One more time, thanks to E, I figured out a super smooth plaster: MEPITEL.
➢ Be careful when you take your shower, don't soak the plaster. Go around it, it must stay 100% sterile.
➢ You can use the plaster also during the chemo days
The deliverer, usually gives more materials and medicines than you need. When your treatment is finished and you want to get rid of the surplus, never throw it away in a normal bin. You can give back some of the perfusion's material to the deliverer, but when it comes to the medicines, look for a place where you can drop them for people who don't have the money to afford them. These treatments are very expensive, for instance my clinic took every thing back and sent it to Africa. Think about it ;)
B. SELF INJECTIONS
After certain operations, in particular stomach's ones, doctors usually prescribe anticoagulant bites to avoid Phlebitis . Don't worry, it doesn't hurt.
I had to do them for one month after each operation, so six times in total. I was so used to I didn't even have to ask a nurse. If you're sensitive, place a little ice-cube on your skin, sterilize and inject!
In order to prepare the best way your injections:
1)Sterilize your hands
2)Sterilize the skin zone where you will prick
3)Remove the needle only when you can't see the needle anymore and you can hear a click
4)Disinfect again the skin
5)Keep the needle and place it in an empty bottle
6)When the bottle is full, give it to your drugstore
7)To show you how easy it was, I used to do it when I was in a café. I just went to the bathroom, being very careful not to touch anything and it was done.;)
As you read in my post 11 on the ambulant doctors, I also had at home:
1)For all my scars and muscles: Physiotherapist at home ☺
2)My facial therapy ☺
My next post will be on how to organize in the best way your sleep over at the hospital.
Have a nice day!
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