Questions about the pump

lmchils57

My son got his first chemo treatment yesterday and he has the pump. I was wondering how people cope with it and what kind of suggestions people have about care of it and hygine care. They said he could shower or bathe but we are worring about the water and exactly how people place it to keep it dry. This is all very new to us so any suggestions, stories on how active you are or anything to help will greatly appreciated.
Thanks-Linda

geotina

Linda
I am so sorry your son is going through this at the tender age of only 31. My daughter is 32 and I can only imagine how hard this is on you. Anyway, back to your question. My husband had the pump on for 48 hours and then it came off. He found it easier not to shower. He took a shower the morning of chemo and skipped the next day, just washed up in the bathroom and washed his hair in the kitchen sink. Now, some people need to wear the pump 24/7 and I have heard that Glad Press and Seal works over the needle area. Sometimes, a shower head with a wand that comes off the wall helps and just hang up the fannie pack outside the shower or have someone hold it or take a bath instead of shower. I'm sure some others will come on with advise. As far as being active, George continued to work full time while getting chemo, pump and all went to work, just wore his shirt outside of his pants and not tucked in. The kids will have to be careful jumping on dad so they don't pull the tubing. George slept with the fannie pack around his waist, he found that easier than taking it off, laying it next to him and trying not to roll around. Take care - Tina

HollyID

I hope your son does well
I hope your son does well with his chemo. I too wear the pump for a couple of days. I get in on Tuesday and wear it Tuesday night through Thursday when I'm disconnected.

The pump is a tiny inconvenience. I don't know if I'd even call it an inconvenience. It's just there. I look like tourist. I wear it to work (I'm a nurse), and I know I've gotten a few funny looks from my patients because of the "woosh-click" it makes.

At night, I literally just put it on my headboard. I have a log bed, so it hangs from the primary log on my side of the bed. I've never once forgotten it if I have to get up. Some people I've heard sleep with it under their pillow, lay it on the floor or even on their nightstand in case they do.

Showering is easy. I cover my port and all with Glad press and seal and secure it with tape. I hang my bag on the shower rod furthest from the shower head. It doesn't get in the way and the tubing is long enough that it gives me plenty of "rope" to play with. I tuck the tubing back in the bag when I'm done.

Other than that, it stays around my waist. Not a biggie. Like I said, I look like a tourist. )

coloCan

HollyID said:

I hope your son does well
I hope your son does well with his chemo. I too wear the pump for a couple of days. I get in on Tuesday and wear it Tuesday night through Thursday when I'm disconnected.

The pump is a tiny inconvenience. I don't know if I'd even call it an inconvenience. It's just there. I look like tourist. I wear it to work (I'm a nurse), and I know I've gotten a few funny looks from my patients because of the "woosh-click" it makes.

At night, I literally just put it on my headboard. I have a log bed, so it hangs from the primary log on my side of the bed. I've never once forgotten it if I have to get up. Some people I've heard sleep with it under their pillow, lay it on the floor or even on their nightstand in case they do.

Showering is easy. I cover my port and all with Glad press and seal and secure it with tape. I hang my bag on the shower rod furthest from the shower head. It doesn't get in the way and the tubing is long enough that it gives me plenty of "rope" to play with. I tuck the tubing back in the bag when I'm done.

Other than that, it stays around my waist. Not a biggie. Like I said, I look like a tourist. )

Pump away
I usually forget about it until I get up from where I'm sitting or laying. Biggest problem is sometimes getting tubing caught on doorknobs, blankets and under my body. As for showering-I don't during the two days with it but will wash right side of body/underarm with washcloth or sponge. As pump is hooked up to a Picc, its pulls on the bandage of the Picc which is what bothers me the most, outside of the effects of the chemo. wishing your son good results from his treatments.....Steve

Kerry S

that is not fair
I got my pump put on Monday and off Friday. I was told I could not shower with it.
They said my port could get infected.

I also kept it on all night. Tucked it into my T shirt. I am a roller. Never had a problem sleeping with it.

What stands out for me was the first time they hooked me up. My nurse came out of her lab wearing a hazmat suit and industrial gloves to protect herself. I’m thinking “and you are going to put that crap in me”

Near the end of my 6 weeks I would be on the john hurting and then hear that damned thing pump more poison in me. I hated it. However, if it was not for that pump and the even nastier radiation, I would be dead today. Please tell your son to hang in there. It is a nasty trip but a life saving one.

Jaylo969

Bathing with a pump
Linda, when I had my pump I just took a tub bath on the 2 days I had the pump in. It was fine.Actually felt good soaking. Just unrolled the tubing and placed it on the bathmat and put a towel over it. The nurse told me that they ARE water resistant but NOT water proof. Don't wanna' drop it in the toilet or something like that. If a booklet came with your son's like it did with mine then it has a lot of info and advice in the booklet such as numbers to call 24 hrs. if you have a malfunction with the pump.

One other thing, some of the tubing invariably has to slide out of the fanny pack. Please tell him to be careful around objects like kitchen cabinet drawers. I darn near pulled mine out when it got caught on a drawer handle. I took the handles off after that, the one's that are about waist high.

My port was covered with a big, clear bandage. It didn't get real wet as I bathed. Gently pat it dry....no hard rubbing with the towel.

The first time is so hard with all the new stuff...port, pump, scarey chemo. It will be okay.Hoping for the best for you and your son. I know your son is appreciating his wonderful Mother.

-Pat

Unknown

This comment has been removed by the Moderator

RickMurtagh

the pump
I generally showered, Wednesday morning before they hooked me up and did not shower again until Friday night after the pump was removed in the afternoon.

However, one Thursday I had a major ostomy blowout and had to shower to clean myself off. I kept the port (covered w/ a large transparent bandaidy thing) from being sprayed on directly and i just put the pump on the floor outside the shower. The tubing for mine was so long this worked pretty well. I put a towel over it to "catch" the water if it traveled down the tubing and out of the shower.

I wore the shoulder strap on 24/7. I could do pretty much whatever my body could manage, except for swiming ofc. The truth is, I always felt so much like crap I just wrapped myself up in a down comforter and lounged in a chair with my feet propped up for the whole 36 hours.

I hope your son's experience with the pump is better than mine. I hated the thing.

christinecarl

Pump
I was told not to shower with it, but that I could bath. I chose not to, I just washed my hair in the sink and used a wash cloth. I always liked to wear shirts and pajamas that had a button down front, because I chose to run the line down the front of me, rather than under a shirt. Just a personal preference thing I guess. I think I had to wear it for 46 hrs or something like that.

Sleeping with it is kind of a pain since it has to be moved when I would roll over and it is easier when you are running about to wear the strap around waist or neck, because sometimes when I was at work and I would go to get up and it would fall because I forgot about it, I was always afraid it would come out, never did though. Had to hide it from kitten who tried to bite the line. So sorry about your son, hope he beats it.

PhillieG

The Pump
I would have to take baths on the days I had the pump hooked up. I would put it in a zip-loc bag and it was fine. They did want me to be careful around the area where the needle was. I used a small fanny pack for the pump, the one they gave me could hold a loaf of Wonder Bread! It was HUGE. I had little trouble sleeping with it. I even took it kayaking with me a bunch of times. I would have it in a zip-loc baggie and in the fanny pack. I did kayak 81 consecutive days right up until 2 days before my first surgery.

The smaller pouch was great though, no one noticed at all and it wasn't a big deal for me.
I am sorry to hear your son has to go through this. I hope he responds very well to treatments.
-p

Brenda3.16

PhillieG said:

The Pump
I would have to take baths on the days I had the pump hooked up. I would put it in a zip-loc bag and it was fine. They did want me to be careful around the area where the needle was. I used a small fanny pack for the pump, the one they gave me could hold a loaf of Wonder Bread! It was HUGE. I had little trouble sleeping with it. I even took it kayaking with me a bunch of times. I would have it in a zip-loc baggie and in the fanny pack. I did kayak 81 consecutive days right up until 2 days before my first surgery.

The smaller pouch was great though, no one noticed at all and it wasn't a big deal for me.
I am sorry to hear your son has to go through this. I hope he responds very well to treatments.
-p

The Pump
My doctor said it was ok to shower with the pump, and I never had any problems with it. I would hang the pump on the outside of the shower door. They always put a big clear plastic bandage over the needle. They gave me extra bandages in case it came off. It did get wet and I would pat it dry.

I did everything with the pump on. I was always really tired the day after the pump was disconnected, but then I bounced right back again.

I hope your son has a great response to the treatments and that he tolerates it well.

Brenda

lmchils57

Thank You So Much
It was good to hear how each of you have done with the pump. My son is on a floor crew for custodial at Washington State University and with all the grinding they do of stone and the heavy mopping it has worried him to try and work while having the needle in. I think he is going to chose to not work during the days of treatments and maybe work some on the off days, depending on how his energy level and pain level is. He really is having a pretty good reaction so far and hopefully that will be the case for most of his treatment time. He is having 12 treatments at two week intervals, then hopefully we will see some really good results. Now if we can get his blood pressure down so they can start the Avastin I would feel better, hopefully they will up his blood pressure med dosage if it is still high in two weeks.
I noticed many of you talked about washing your hair, so that raised another question for me. Did most of you end up losing your hair or not?
It is really hard as a Mom to see my son, who is young and has three sons that depend on him, go through this. The thought of anything happening to him because of this is very frightening, but we are working hard to stay positive, sometimes that is not easy when you read different things. This discussion board has really helped me, I read of the ones that are surviving and having full lives and it gives hope. It does not help that I know this came from my side of the family so even though it is not anything I could do anything about there is a little feeling of guilt that it was passed on to him. I keep thinking it should be me not him it should not have skipped a generation or at least up to this point has skipped a generation. I have lectured both my brother and sister to make sure they are getting tested when they are supposed to since it was our father that had it many years ago. He was very fortunate for when his was found, colon cancer was pretty much a death sentance but he beat it and I am praying Scott will too. I am so grateful my son has a positive attitude and he knows he has a lot to live for so he is ready to fight and do what he has to.

JR

Linda
I am so sorry to hear of your sons dx. To go through this with young children is extremely difficult at best. Hopefully your sons age will work for him. Make sure he keeps his strength up.

Assuming you son is getting the Folfox regimen, I found that it worked best for me to get infused on Friday afternoon and get the pump off on Sunday. That way I was home for most of the 46 hours on the pump. After a few infusions, ask the chemo nurse to train your son to disconnect the pump himself. It's not hard to do, just a little frightening the first couple of times.

As far as showering, I don't remember what was suggested but I always took a bath rather than shower. It just made sense to me.

I wish you and your son and family the best. Be strong.

John

PS - Be careful of what you read in the internet. Alot of outdated and incorrect info.

christinecarl

lmchils57 said:

Thank You So Much
It was good to hear how each of you have done with the pump. My son is on a floor crew for custodial at Washington State University and with all the grinding they do of stone and the heavy mopping it has worried him to try and work while having the needle in. I think he is going to chose to not work during the days of treatments and maybe work some on the off days, depending on how his energy level and pain level is. He really is having a pretty good reaction so far and hopefully that will be the case for most of his treatment time. He is having 12 treatments at two week intervals, then hopefully we will see some really good results. Now if we can get his blood pressure down so they can start the Avastin I would feel better, hopefully they will up his blood pressure med dosage if it is still high in two weeks.
I noticed many of you talked about washing your hair, so that raised another question for me. Did most of you end up losing your hair or not?
It is really hard as a Mom to see my son, who is young and has three sons that depend on him, go through this. The thought of anything happening to him because of this is very frightening, but we are working hard to stay positive, sometimes that is not easy when you read different things. This discussion board has really helped me, I read of the ones that are surviving and having full lives and it gives hope. It does not help that I know this came from my side of the family so even though it is not anything I could do anything about there is a little feeling of guilt that it was passed on to him. I keep thinking it should be me not him it should not have skipped a generation or at least up to this point has skipped a generation. I have lectured both my brother and sister to make sure they are getting tested when they are supposed to since it was our father that had it many years ago. He was very fortunate for when his was found, colon cancer was pretty much a death sentance but he beat it and I am praying Scott will too. I am so grateful my son has a positive attitude and he knows he has a lot to live for so he is ready to fight and do what he has to.

Linda
I continued to work throughout chemo, actually only called in sick 2 times in the 6 months of chemo. Would just go to work with pump and sleep as much as I could on weekends. I hardly lost any hair, no hat needed. It did get thinner, especially near the end, but not bad. I did feel self conscious with the pump in public, people would stare and look sad at me. But whatever, before they had the pump I would have been stuck in the hospital the entire time. I had the small baby bottle type pump, I remember my mom's was a huge one with batteries. I was lucky that way. Please don't feel bad that it runs in your family, it does for me too, not something you would wish upon someone you love.

lmchils57

JR said:

Linda
I am so sorry to hear of your sons dx. To go through this with young children is extremely difficult at best. Hopefully your sons age will work for him. Make sure he keeps his strength up.

Assuming you son is getting the Folfox regimen, I found that it worked best for me to get infused on Friday afternoon and get the pump off on Sunday. That way I was home for most of the 46 hours on the pump. After a few infusions, ask the chemo nurse to train your son to disconnect the pump himself. It's not hard to do, just a little frightening the first couple of times.

As far as showering, I don't remember what was suggested but I always took a bath rather than shower. It just made sense to me.

I wish you and your son and family the best. Be strong.

John

PS - Be careful of what you read in the internet. Alot of outdated and incorrect info.

I have already figured that out
I have already figured that out, I try to stick to sites that either this site or the Colon Cancer Alliance reccommends, I figure they would have the most reliable places to go. His oncologist has him on Fluoracil (this is what is in the pump, Irinotecan, Leucovorin, and avastin when we get his blood pressure down. Not sure what the Folfox regimen is, could you tell me a little about it? We are so new to this that I do not know much yet about what terapies may work better for people.
I am not pushing one way or another on the work thing I figug he is the one having to do it so I am not the one to judge. If he does not go back to work full time he is thinking up projects he can do. First thing he wants to do it make toyboxes for his boys, then I would like him to maybe put in a raised flower bed along one side of the house and then we were talking about him making a loft bed for his oldest son. I figure all that should keep him busy for the 24 weeks he will be doing the treatment. He has to work some each month to keep his insurance active so he cannot drop work all the way, which I figure is not a bad thing really.
Thanks for the input