GETTING READY FOR SURGERY: After
breast cancer surgery, there are a few things we just don't expect, and
if we're told, we forget. Added to that, medical professionals deal with
so many patients that they begin to run together, and they often forget to
REALLY explain to each of us how to deal with the small stuff. After all, they
are in the business of saving our lives, it's not at the top of their
list to tell you how best to take a shower after surgery, or how to deal with
the loss after a mastectomy, or...a multitude of other things.
I'd like to address a few here below.
There you are, first night home after major surgery where your chest has just had a major trauma, and you have no idea where to begin.
They may have mentioned that you'll need to change bandages daily and wrap your chest tightly with a wide elastic bandage, but did they tell you how MANY of those large gauze squares you'll need to buy, or how expensive they are, or how hard it is to wrap the stretchy elastic around and around your body? Or how raw feeling even your undamaged skin may get where that tight elastic goes around you?
You probably cannot put on the bandages yourself, particularly if you've had a bilateral mastectomy, so your husband (or family member or good friend) may need to assist you. Give them a list of supplies and ask for help.
Be sure you have plenty of the bandages, first of all, whatever kind the nice nurse recommended. You do NOT want to be sitting there freshly bathed and ready to re-bandage, and have to wait for someone to go to the pharmacy, for large enough gauze bandages. Do be aware you may have to use several large squares to cover each incision, each time you change. Don't try to 'get by' with keeping the old bandage on too long.
It's easiest if you clean the area as the doctor or nurse advised you, then hold the large gauze squares in place yourself while your helper wraps the elastic bandage over the gauzes, then around and around your body before securing it. Make sure your helper sees how the bandage is arranged on you BEFORE you take it off to change, otherwise you will have to explain everything while feeling tired and in pain.
The elastic bandage started to irritate my own skin after a week, I looked in my stash of sewing fabric and found some nice soft fleece to wrap around my body after applying the gauze bandages but BEFORE adding on the elastic bandage
Whew....what a relief! If you don't have fleece, you may have a fleece sweatshirt in your closet that you can cut apart. Cut a big rectangle of fabric that you can cut and adjust until it's just a bit larger than your elastic bandage.
When you get to the point that you're allowed to take a shower on your own, chances are that you still will have the various drainage tubes coming out of your body. If you're reading this BEFORE surgery and don't know about that, get ready, it's not pretty, but it's not the worst thing you've had to do either, and you CAN do this.
There may be one, two, or three drainage tubes, that will just look HUGE to your eyes, coming out of your skin somewhere on one or both sides of your body, depending on whether you have one mastectomy or two, and possibly after lumpectomy as well, sometimes not. They will be coming out of an area AWAY from your surgical scars, held in place by a stitch or two, with your skin tight around them. This will feel odd and look odd to you, but it's not particularly painful. Just ignore it and try to not get them caught on anything.
You will be given instructions and a small measuring cup before you leave the hospital. It is very important that you do as instructed, and empty the little bulbs attached to the end of your drain tubes, measuring the amount of liquid collected. I did this dutifully, but at every checkup I practically BEGGED them to 'get them out of me' because I was so tired of it.
One came out fairly soon as the drainage slowed enough, but it was weeks before all of them came out. The doctor or nurse pulling them out is not going to be your favorite experience, so don't be in such a hurry. :^) I rushed them to do the removal of my last one, and I think that's the reason a large swelled area remained for so long, should have let it drain instead, but who knew?
When you shower, those bulbs feel quite heavy on the end of those long tubes, and you will feel uncomfortable. There again, no one told me what to do. One day, in desperation, tired of trying to hold the bulbs in one hand and wash my tired, achy, weak body with the other hand, I had an idea! A pair of clean pantyhose worked wonders, along with a clothespin.
I tied the legs of the pantyhose in a knot at about the knee level and put the knot behind my neck, letting the panty part hang upside down on my chest. After placing those three drainage bulbs inside the 'panty', I folded the waistband over a few times and clothes-pinned it shut. THERE! Two hands free to shampoo my hair and take a proper shower, it was HEAVENLY! Small comforts...
A friend recently showed me what she was given at the hospital to hold her drainage tubes in the shower. I was surprised to see that it was an ordinary canvas nail-apron (ties around the waist and has a couple pockets for nails) from a home center! Volunteers had decorated some with t-shirt craft paints to make them cheerful, and handed them out to patients. It worked fine... and I'd never have thought of that at the time.
They may have mentioned that you'll need to change bandages daily and wrap your chest tightly with a wide elastic bandage, but did they tell you how MANY of those large gauze squares you'll need to buy, or how expensive they are, or how hard it is to wrap the stretchy elastic around and around your body? Or how raw feeling even your undamaged skin may get where that tight elastic goes around you?
You probably cannot put on the bandages yourself, particularly if you've had a bilateral mastectomy, so your husband (or family member or good friend) may need to assist you. Give them a list of supplies and ask for help.
Be sure you have plenty of the bandages, first of all, whatever kind the nice nurse recommended. You do NOT want to be sitting there freshly bathed and ready to re-bandage, and have to wait for someone to go to the pharmacy, for large enough gauze bandages. Do be aware you may have to use several large squares to cover each incision, each time you change. Don't try to 'get by' with keeping the old bandage on too long.
It's easiest if you clean the area as the doctor or nurse advised you, then hold the large gauze squares in place yourself while your helper wraps the elastic bandage over the gauzes, then around and around your body before securing it. Make sure your helper sees how the bandage is arranged on you BEFORE you take it off to change, otherwise you will have to explain everything while feeling tired and in pain.
The elastic bandage started to irritate my own skin after a week, I looked in my stash of sewing fabric and found some nice soft fleece to wrap around my body after applying the gauze bandages but BEFORE adding on the elastic bandage
Whew....what a relief! If you don't have fleece, you may have a fleece sweatshirt in your closet that you can cut apart. Cut a big rectangle of fabric that you can cut and adjust until it's just a bit larger than your elastic bandage.
When you get to the point that you're allowed to take a shower on your own, chances are that you still will have the various drainage tubes coming out of your body. If you're reading this BEFORE surgery and don't know about that, get ready, it's not pretty, but it's not the worst thing you've had to do either, and you CAN do this.
There may be one, two, or three drainage tubes, that will just look HUGE to your eyes, coming out of your skin somewhere on one or both sides of your body, depending on whether you have one mastectomy or two, and possibly after lumpectomy as well, sometimes not. They will be coming out of an area AWAY from your surgical scars, held in place by a stitch or two, with your skin tight around them. This will feel odd and look odd to you, but it's not particularly painful. Just ignore it and try to not get them caught on anything.
You will be given instructions and a small measuring cup before you leave the hospital. It is very important that you do as instructed, and empty the little bulbs attached to the end of your drain tubes, measuring the amount of liquid collected. I did this dutifully, but at every checkup I practically BEGGED them to 'get them out of me' because I was so tired of it.
One came out fairly soon as the drainage slowed enough, but it was weeks before all of them came out. The doctor or nurse pulling them out is not going to be your favorite experience, so don't be in such a hurry. :^) I rushed them to do the removal of my last one, and I think that's the reason a large swelled area remained for so long, should have let it drain instead, but who knew?
When you shower, those bulbs feel quite heavy on the end of those long tubes, and you will feel uncomfortable. There again, no one told me what to do. One day, in desperation, tired of trying to hold the bulbs in one hand and wash my tired, achy, weak body with the other hand, I had an idea! A pair of clean pantyhose worked wonders, along with a clothespin.
I tied the legs of the pantyhose in a knot at about the knee level and put the knot behind my neck, letting the panty part hang upside down on my chest. After placing those three drainage bulbs inside the 'panty', I folded the waistband over a few times and clothes-pinned it shut. THERE! Two hands free to shampoo my hair and take a proper shower, it was HEAVENLY! Small comforts...
A friend recently showed me what she was given at the hospital to hold her drainage tubes in the shower. I was surprised to see that it was an ordinary canvas nail-apron (ties around the waist and has a couple pockets for nails) from a home center! Volunteers had decorated some with t-shirt craft paints to make them cheerful, and handed them out to patients. It worked fine... and I'd never have thought of that at the time.
I'd like to comment on the emotional trauma you've gone through.
Any surgery is frightening, cancer surgery is beyond frightening, removal of part of our body is outright traumatic, but in many cases, women are treated to 'drive by' surgery (what I call it when we have breasts surgically altered or amputated and then are sent home as if you've just had minor surgery.)
Ladies, if a man had several pounds of flesh removed and was left with a couple of 6 inch stitched up scars and several drainage bulbs hanging out of his body, I defy anyone to get that man out of the hospital and home to take care of himself on his own. Imagine trying to put a cat through a hole in a screen door. Now imagine that man as they tried to put him out the front door of the hospital. There would be a remarkable similarity. Enough said.
Women should be given a couple days in the hospital to learn how to move without pain, how to dress themselves around the tubes, how to change dressings and measure drainage bulb output, and how to function with the needed pain meds without falling on your face. I was BLESSED with a surgeon who actually managed to get it approved for me to spend TWO nights in the hospital, but I've heard about women who were sent home the same day. It happens way too often.
Can...you....imagine.... even the next day is difficult, but wow. I could barely handle basic movement that first day.
Well, anyway, there you are at home, and generally no one has counseled you about what it's going to be like the first time you look at yourself after mastectomy. Unless you've seen one of the 'movie of the week' type things, you really have no clue. I cannot tell you how to deal with it, but will tell you what I did. I avoided it. For a very long time. Maybe not the best thing, but unless you've been through it, don't judge.
I didn't look straight into the mirror, that took awhile. I sort of glanced enough to make do, just chose not to look too closely.
Bless my husband, the man who could barely put a bandage on himself back then, actually faced me head on and changed my bandages daily and worked around my drainage tubes. He doesn't know it, but to this day, it still buys him leverage when he's really in the dog house, lol...
In fact, our bathroom has large sink-to-ceiling mirrors facing the shower door, so I found myself avoiding that direction while drying off. On the other end of the room was a large garden-style-bathtub with two huge mirrors behind it. I actually placed a large fake ficus tree in that tub and there it remained for about a year, just to block those mirrors.
There, I admitted it. I worked in the mental health field for years, and yet that was the best I could do for myself. You never know how you're going to react to something like this, so be prepared. You may think you'll be so cool about dealing with it, but end up hanging towels over mirrors and whatever as well.
Go with it. Don't be ashamed of the way you have to deal with it. Take your time, and deal with ONE thing only right now, healing your wounds, caring for yourself as well as you can, and not focusing on what you've lost, only that you are alive and in the end, you are YOURSELF, no matter what the scars the outer package suffers.
When you're ready, you can deal with each feeling as it comes. You may find it's like losing a friend...there's denial, grief, sadness, anger, you name it. My best way of dealing with issues was to turn them over to God.
Life in this world is temporary at best, and we don't get points for making it to heaven unmarred. These bodies don't make the trip with us anyway, so remembering that made it easier for me to accept.
It may not be easy to look at or touch those scars, even to bathe them. It may take some time to become accustomed to the physical feeling of your ribs through the skin around the scars, because you're simply not used to being able to feel ribs there. You do more used to it as time goes one, so give yourself some time.
As the numbness under the arms has slowly shrunk down to a much smaller area, I no longer mind doing simple things like shaving my underarms. (By the way, that's not an easy thing to do when the area is totally numb that first year or two, so be careful. Use an electric razor if possible!)
Recently, I had a regular physical exam of the scar areas at the oncologist's office. As the nerves grow back, there's now an area that feels like an electric shock when touched, and the physician's assistant seemed surprised that it still bothers me to have that area probed. Even THEY cannot understand how it feels, so please don't hold it against your various doctors and nurses and don't let it make you feel as if you're 'odd'. People who haven't experienced it simply cannot know what it feels like.
If you have someone to talk to about it, who has gone through it, you'll feel better. Look around, find a breast cancer support group. You may not initially see one advertised anywhere.
Most hospitals don't actually get paid anything to provide a free support group, if they provide one at all, so advertising in the newspaper may not happen. In our town, it's almost like a secret that one exists. Many churches have a breast cancer support group for their members. If you don't find a community one, call various churches. You may find one that welcomes you into their group with open arms.
Ask as many people as you can. Try at your oncologist's office, at women's centers (where you may have gotten your mammogram), etc... Eventually you will find a support group, possibly more than one because larger cities have several.
Give any group you go to at least three tries. The first time, you may feel timid about going, but trust me, every woman in that group knows exactly what you've been through and they WANT to be there for you. By the second meeting, you'll know a few names. By the third, I could not pry you out of that room. You'll be so glad you went, so please do go.
I avoided going to a group for a year. It was a year wasted, I wouldn't miss it now for the world. Don't worry, you're not going to be analyzed to death, lol... you're just going to meet your 'sisters', and before you know it, you'll swear they ARE your sisters. Go, be strong. Think to yourself, "the worst that can happen is that I'll get up and walk out". You won't.
When you do find the right group, stay with them. You will soon be the one who welcomes the next survivor, and helps answer their questions on how to deal with the various issues they have. My group is wonderful, we laugh, talk, end up going to lunch together, cry together sometimes, but never want the day to be over.
You'll just have to trust on this, and I cannot stress it enough... go to the group. There will never be another human being on this earth who understand better how you feel, than someone else who has been in your shoes.
Any surgery is frightening, cancer surgery is beyond frightening, removal of part of our body is outright traumatic, but in many cases, women are treated to 'drive by' surgery (what I call it when we have breasts surgically altered or amputated and then are sent home as if you've just had minor surgery.)
Ladies, if a man had several pounds of flesh removed and was left with a couple of 6 inch stitched up scars and several drainage bulbs hanging out of his body, I defy anyone to get that man out of the hospital and home to take care of himself on his own. Imagine trying to put a cat through a hole in a screen door. Now imagine that man as they tried to put him out the front door of the hospital. There would be a remarkable similarity. Enough said.
Women should be given a couple days in the hospital to learn how to move without pain, how to dress themselves around the tubes, how to change dressings and measure drainage bulb output, and how to function with the needed pain meds without falling on your face. I was BLESSED with a surgeon who actually managed to get it approved for me to spend TWO nights in the hospital, but I've heard about women who were sent home the same day. It happens way too often.
Can...you....imagine.... even the next day is difficult, but wow. I could barely handle basic movement that first day.
Well, anyway, there you are at home, and generally no one has counseled you about what it's going to be like the first time you look at yourself after mastectomy. Unless you've seen one of the 'movie of the week' type things, you really have no clue. I cannot tell you how to deal with it, but will tell you what I did. I avoided it. For a very long time. Maybe not the best thing, but unless you've been through it, don't judge.
I didn't look straight into the mirror, that took awhile. I sort of glanced enough to make do, just chose not to look too closely.
Bless my husband, the man who could barely put a bandage on himself back then, actually faced me head on and changed my bandages daily and worked around my drainage tubes. He doesn't know it, but to this day, it still buys him leverage when he's really in the dog house, lol...
In fact, our bathroom has large sink-to-ceiling mirrors facing the shower door, so I found myself avoiding that direction while drying off. On the other end of the room was a large garden-style-bathtub with two huge mirrors behind it. I actually placed a large fake ficus tree in that tub and there it remained for about a year, just to block those mirrors.
There, I admitted it. I worked in the mental health field for years, and yet that was the best I could do for myself. You never know how you're going to react to something like this, so be prepared. You may think you'll be so cool about dealing with it, but end up hanging towels over mirrors and whatever as well.
Go with it. Don't be ashamed of the way you have to deal with it. Take your time, and deal with ONE thing only right now, healing your wounds, caring for yourself as well as you can, and not focusing on what you've lost, only that you are alive and in the end, you are YOURSELF, no matter what the scars the outer package suffers.
When you're ready, you can deal with each feeling as it comes. You may find it's like losing a friend...there's denial, grief, sadness, anger, you name it. My best way of dealing with issues was to turn them over to God.
Life in this world is temporary at best, and we don't get points for making it to heaven unmarred. These bodies don't make the trip with us anyway, so remembering that made it easier for me to accept.
It may not be easy to look at or touch those scars, even to bathe them. It may take some time to become accustomed to the physical feeling of your ribs through the skin around the scars, because you're simply not used to being able to feel ribs there. You do more used to it as time goes one, so give yourself some time.
As the numbness under the arms has slowly shrunk down to a much smaller area, I no longer mind doing simple things like shaving my underarms. (By the way, that's not an easy thing to do when the area is totally numb that first year or two, so be careful. Use an electric razor if possible!)
Recently, I had a regular physical exam of the scar areas at the oncologist's office. As the nerves grow back, there's now an area that feels like an electric shock when touched, and the physician's assistant seemed surprised that it still bothers me to have that area probed. Even THEY cannot understand how it feels, so please don't hold it against your various doctors and nurses and don't let it make you feel as if you're 'odd'. People who haven't experienced it simply cannot know what it feels like.
If you have someone to talk to about it, who has gone through it, you'll feel better. Look around, find a breast cancer support group. You may not initially see one advertised anywhere.
Most hospitals don't actually get paid anything to provide a free support group, if they provide one at all, so advertising in the newspaper may not happen. In our town, it's almost like a secret that one exists. Many churches have a breast cancer support group for their members. If you don't find a community one, call various churches. You may find one that welcomes you into their group with open arms.
Ask as many people as you can. Try at your oncologist's office, at women's centers (where you may have gotten your mammogram), etc... Eventually you will find a support group, possibly more than one because larger cities have several.
Give any group you go to at least three tries. The first time, you may feel timid about going, but trust me, every woman in that group knows exactly what you've been through and they WANT to be there for you. By the second meeting, you'll know a few names. By the third, I could not pry you out of that room. You'll be so glad you went, so please do go.
I avoided going to a group for a year. It was a year wasted, I wouldn't miss it now for the world. Don't worry, you're not going to be analyzed to death, lol... you're just going to meet your 'sisters', and before you know it, you'll swear they ARE your sisters. Go, be strong. Think to yourself, "the worst that can happen is that I'll get up and walk out". You won't.
When you do find the right group, stay with them. You will soon be the one who welcomes the next survivor, and helps answer their questions on how to deal with the various issues they have. My group is wonderful, we laugh, talk, end up going to lunch together, cry together sometimes, but never want the day to be over.
You'll just have to trust on this, and I cannot stress it enough... go to the group. There will never be another human being on this earth who understand better how you feel, than someone else who has been in your shoes.
