Keeping your dignity during chemo, I am a bit angry this morning.

[Mackey Mouse]

I have been thinking about this since yesterday when my DH had his first chemo at the new place.. I wrote this recently and thought I would repeat it here.

"I have to tell you here the whole thing is horrifying seeing all these people sitting in a room, all connected to IV's, no one looking at each other, no one talking and yet nothing separating them.. no curtains, nothing.. the whole thing is horrifying to me.."

There has to be a better way to administer this chemotherapy and allow the patient some comfort and privacy....Lately I have been thinking this is such big business too, get them in, hook them up, and get them out, and I find myself getting bitter about the handling of people who are sick and having the insurance companies dictate how they are handled, it is all about the almighty buck and the best way to make it scream....

I feel like I should find an advocacy group and get involved in allowing these people the dignity and most of all PRIVACY in their treatments..

My daughters said to me recently do you think Farrah Fawcett is having her treatment sitting in a room with other cancer patients?

 

[safetymom]

Marsha, I agree with you. There has to be a better way. It is like they have taken your dignity away. I doubt Farrah is having to do it this way.

A little caring and compassion goes a long way doesn't it?

Vent away.

 

[arminnie]

"I have to tell you here the whole thing is horrifying seeing all these people sitting in a room, all connected to IV's, no one looking at each other, no one talking and yet nothing separating them.. no curtains, nothing.. the whole thing is horrifying to me.."

My personal observations:

My mother's oncologist had a large room with a variety of chairs - the type that you might see in a home. People had could opt for a recliner, nice leather chair plus several other types. What I remember was the comraderie between the patients. They did have one or two areas where curtains could be pulled, but the patients seemed to like the bonding that took place among them. It was very homey although not totally private.

The chemo room at the hospital was very sterile and hospital-like as expected. It had several chairs but we were the only ones present that day. No privacy at all if other patients had been there.

My pulmonary doctor has a small room with a cot to administer chemo. It is totally private.

It appears there are places with the option for privacy, but it is a shame that you are not being offered this choice.

 

[TnRobin]

That is horrible Marsha. It seems like they should at least have a curtain or something.

 

[JunieJay]

Gosh I had no idea this is what it is like.

I think you should start an advocacy group Marsha. Surely you aren't the only one who has felt this way.

 

[gemjoy]

Marsha ~ when I read this post... memories of DH taking his chemo came flooding back. I share many of the thoughts you're having. DH would close his eyes and just rest - he's a very private person - I often wondered if he closed his eyes thinking "I can't see them, so they can't see me" (it was set up so that medical recliners looped right around the room) but my heart would break for the patients that were obviously feeling the effects of the poison entering their bodies or just the pain of their illness in general. I often asked myself WHY can these people not have some privacy so that they can spare themselves some dignity. I remember one particular woman that came in alone - no family member there to comfort her... maybe she preferred it that way anyway, she was vomiting into one of those plastic containers they give you when you're sick and GOD help me... the tears just rolled down my face I didn't know her - but I wanted to rub her back and wipe her forehead with a cool cloth... it broke my heart! It's so hard to watch your own loved one go through cancer treatment and it's heartbreaking to share a room with so many people whose fate you don't know - KWIM?? You begin to look for the same faces each week and when you finish chemo... you think of them often and wonder how they are. I am a changed person since DH's cancer. Stay strong and GOD bless

 

[NHAnn]

IMy daughters said to me recently do you think Farrah Fawcett is having her treatment sitting in a room with other cancer patients?

SHe's right...and yes it is sad, and maddening. There should eb a choice...privacy, at least with curtains for Pete's sake...or not.


gggrrrrrrr

 

[SillyMe]

My mom is battling breast cancer. I went with her to her first chemo treatment. It took everything I had to fight back the tears for her sake. It was the same as you desribed. Although the nurses were all fantastic, it just seemed so cold in that room. Everyone sat there in their chairs, hooked up to their IVs and it was so quiet. No one talked. It wasn't cozy. It just felt awful.

 

[Mackey Mouse]

Hugs to you Sillyme.. I know how you feel, not sure what we can do about it... Even the tv's in this chemo room did not work, at least in Boston it was friendlier.. I am disappointed in this treatment area, but it is 5 minutes from my house as opposed to a 2 hour drive one way....thankfully I am there for him, but no one even offers him a drink or anything.. I did notice there were curtains, but the area the chairs are in is so small I do not think it would go around the lounging chair...

In Boston, the nurse offers you a cold drink, tries to make you comfortable...I am still not over this chemo place.. The other day an older woman came in and they sat her in a chair that someone else had just gotten out of receiving chemo, they did not clean that chair before she sat down. When she did sit down, she reeked of cigarette smoke, not sure if I posted about this, but I was hoping that DH would not smell it.. I almost got sick.. Here she is for chemo, for what, probably for lung cancer, and she is still smoking. I think I already ranted about this, but she sat at a dirty chair as far as I was concerned.

I did speak to one of my doctors about it and told him how I was feeling. I also told him I did not think it was clean and that I had noticed a nurse wiping down each chair with the same disposable cleaning towelette.. so much for cleaning, you are just passing whatever you are trying to clean between chairs. He said he was going to say something to the people that run the place.. next time she was cleaning, I noticed she was using a new towelette for each chair....He said he would not use my name and I believe he would not...he is a wonderful doctor.

What is the alternative.. there has to be another way to handle this illness without stripping the patient of his dignity... it is hard enought to have cancer, but to have to share your illness with people you do not know, who really do not want to share it with you... They do not want to even look at you. So sad.

Sillyme, please do try and stay strong for your Mother.. be her advocate and speak up for what is right for her. Hugs.

 

[jann1033]

Hugs to you Sillyme.. I know how you feel, not sure what we can do about it... Even the tv's in this chemo room did not work, at least in Boston it was friendlier.. I am disappointed in this treatment area, but it is 5 minutes from my house as opposed to a 2 hour drive one way....thankfully I am there for him, but no one even offers him a drink or anything.. I did notice there were curtains, but the area the chairs are in is so small I do not think it would go around the lounging chair...

In Boston, the nurse offers you a cold drink, tries to make you comfortable...I am still not over this chemo place.. The other day an older woman came in and they sat her in a chair that someone else had just gotten out of receiving chemo, they did not clean that chair before she sat down. When she did sit down, she reeked of cigarette smoke, not sure if I posted about this, but I was hoping that DH would not smell it.. I almost got sick.. Here she is for chemo, for what, probably for lung cancer, and she is still smoking. I think I already ranted about this, but she sat at a dirty chair as far as I was concerned.

I did speak to one of my doctors about it and told him how I was feeling. I also told him I did not think it was clean and that I had noticed a nurse wiping down each chair with the same disposable cleaning towelette.. so much for cleaning, you are just passing whatever you are trying to clean between chairs. He said he was going to say something to the people that run the place.. next time she was cleaning, I noticed she was using a new towelette for each chair....He said he would not use my name and I believe he would not...he is a wonderful doctor.

What is the alternative.. there has to be another way to handle this illness without stripping the patient of his dignity... it is hard enought to have cancer, but to have to share your illness with people you do not know, who really do not want to share it with you... They do not want to even look at you. So sad.

Sillyme, please do try and stay strong for your Mother.. be her advocate and speak up for what is right for her. Hugs.

just a thought about the smelly woman...she may not smoke, it could be someone in her family who smokes...an maybe gave her second hand smoke problems..i have friends who have smokers in their family that smell like smoke as it permeates their clothes, books,purses everything..

 

[SillyMe]

Hugs to you Sillyme.. I know how you feel, not sure what we can do about it... Even the tv's in this chemo room did not work, at least in Boston it was friendlier.. I am disappointed in this treatment area, but it is 5 minutes from my house as opposed to a 2 hour drive one way....thankfully I am there for him, but no one even offers him a drink or anything.. I did notice there were curtains, but the area the chairs are in is so small I do not think it would go around the lounging chair...

In Boston, the nurse offers you a cold drink, tries to make you comfortable...I am still not over this chemo place.. The other day an older woman came in and they sat her in a chair that someone else had just gotten out of receiving chemo, they did not clean that chair before she sat down. When she did sit down, she reeked of cigarette smoke, not sure if I posted about this, but I was hoping that DH would not smell it.. I almost got sick.. Here she is for chemo, for what, probably for lung cancer, and she is still smoking. I think I already ranted about this, but she sat at a dirty chair as far as I was concerned.

I did speak to one of my doctors about it and told him how I was feeling. I also told him I did not think it was clean and that I had noticed a nurse wiping down each chair with the same disposable cleaning towelette.. so much for cleaning, you are just passing whatever you are trying to clean between chairs. He said he was going to say something to the people that run the place.. next time she was cleaning, I noticed she was using a new towelette for each chair....He said he would not use my name and I believe he would not...he is a wonderful doctor.

What is the alternative.. there has to be another way to handle this illness without stripping the patient of his dignity... it is hard enought to have cancer, but to have to share your illness with people you do not know, who really do not want to share it with you... They do not want to even look at you. So sad.

Sillyme, please do try and stay strong for your Mother.. be her advocate and speak up for what is right for her. Hugs.

The nurses at Mom's doctor's office are nice. They do what they can to try to make you feel comfortable, but I agree...it still feels cold, like you're a number. I understand they can't use regular furniture and things like that b/c they have to sanitize. I think the least they could do, though, is to maybe hang those sliding curtains between the chairs so you can have some privacy if you wish. You don't have to sit there staring at other cancer patients or watch them get sick.

Good for you for complaining. I'm sure the doctor would never tell the nurses who complained. Her job is to keep the place sanitized along with taking care of patients. She clearly wasn't doing her job. You can't take chances like that when you're going through chemo...and you shouldn't have to.

 

[Mackey Mouse]

Just on the smoking lady, please know that I felt bad for her, she was alone and old in the chemo area. She was pretty weak and they could not do chemo on her...there but for the grace of God go I, but it almost made me ill. I guess when you smoke or others smoke in your family, you do not notice it.
I am a reformed smoker and so is my DH. When you are having chemo, smells can really set off the nausea thing so I was hoping he would not smell it. I suppose it could have been second hand smoke, but I know it was not from what I saw when we were leaving.. It is a terrible addiction.

 

[jann1033]

this is going to sound cold...just a warning...

i went to nursing school ( it bothered me so I took another direction so didn't finish) and i know it almost forces you to have a different perspective...i think treating the whole person is stressed more now but then ( almost 30 yrs ago) the patient wasn't really thought of as a whole, but as an illness ie the coma in rm 106...and the detachment was a defense mechanism because of seeing horrendous things happening to human beings day in and day out. and i think sometimes it becomes mundane..it's a job in other words just a job where you see terrible suffering everyday but still a job like bagging groceries is a job...plus you really do need some emotionally detachment or it would drive you crazy...and lots of people from those days are still working hence maybe still have those attitudes.it's not an excuse and it certainly doesn't help the families or patients and isn't a good thing but just maybe why sometimes it happens.
and i think the attitudes rub off..ie if a few are like that they mostly end up like that while if a few are really caring that is the way most are..i've noticed that even in drs offices...if one is a real witch it seems like they are all witchy maybe cause they pick up each other's attitudes... that's probably true in insurance offices and banks etc to but you don't really expect compassion there like you would in health care...i hope this is clear...as mud probably

i got out of the field cause i could feel myself becoming less compassionate and i didn't like that..and not that all health care pros are like that some are great and maintain that genuine connection with their patients...just adding another slant maybe as to why some might seem to be less so

and as far as the smelly woman still smoking now

 

[CarolynU]

My heart goes out to you and your brave DH. Thank goodness my DH's chemo was administered in tablet or Hickman line form as an outpatient. Absolutely everything should be done to make this experience as sympathetic and dignified as possible.

 

[a1tinkfans]

I just wanted to offer my heartfelt wish for strength and love and recovery, for all of you and your family members who are going thru this very emotional, difficult time in their lives.
As a breast cancer survivor I know the effects of chemo first hand. I count myself as one of the very fortunate, being treated at a medical facility that tried very hard to be accomodating, compassionate and caring. (I was treated at Memorial Sloan Kettering) Each individual area had a patient recliner with additional chair for family member, a tv w/dvd player and dvd's, a basket of magazines and a staff that offered water and juices with small snacks too. The nurses came by for comfort as well as for care. There were several stations that were more private, enclosed area's, and I recall that I once was placed there (as the only open chair), but soon found that the slight interaction of just a glance/smile from other patients in the open area was really something that kept me occupied as I underwent chemo. I found that I actually preferred to be out among the other patients, especially as I was the young one among so many older patients. It was a long 5 hours in that chair sometimes! That is not to say that there weren't times I wanted to crawl in a ball and just disappear as I got so very sick one time. Even if the facility you are at is not compassionate, the compassion in YOUR eyes will shine thru.
My heart aches that each facility does not offer private compassionate care to all their patients.
Is there a patient advocate at your facility? A support group offered to atleast "talk to" about the issue?
Please know that YOUR loving support helps so very much, despite what it may look like, as your loved one sits there quietly.
YOU make all the difference in the world as I know my own family did for me.
May He bless you and your loved ones each and every day!
Your life can change on a dime as they say, smile, laugh often and love each other....

 

[Shugardrawers]

How much longer does Tom have to go with his chemo? It's just inconceivable to me that health care professionals are so clueless. WTH is the matter with them? You can't tell me they don't know how other clinics work.

My clinic actually looks more like someones living room than a clinic. It has sofas and chairs for family and large recliners for the patients along with the usual hospital equipment. Everyone has a small tv and cd/dvd player and if you bring your own laptop they have free wifi (I dised from there many times, how addicted am I? )There is also another area with private rooms that have a bedroom feel to them even though it's really a hospital bed and equipment. You get to take your choice and you can switch at any time during the day. Free beverages for everyone, light snacks for patients and even a deli where family can buy breakfast or lunch pretty darn cheap. It's connected to the hospital so I'm assuming that's where the money for all that came from. I know top of the line amenities aren't cheap but compassion and cleanliness is free. There's not a clinic in this country that can't afford to provide that.

 

[Mackey Mouse]

This is a small hospital and it is their chemo treatment center... there are tv's but they do not work. Not once have they offered him a drink or crackers, nothing..

I could write a book, the lack of caring is horrendous.... He has one more week of chemo for this grouping and then we scan February 14....and depending on what is going on, we will make a decision whether we go right into the next protocol or we take some together and go away for a bit..