New Port

sflgirl
sflgirl Member Posts: 220 Member

I'm off in a couple of hours to get a port installed in my chest.  Feeling a little nervous.  Anticipating the next step I guess.  Chemo starts in 3 days on Thursday.  5 hour infusion at the hospital and then a 46 hour pump.  I'm hoping to go to work on the second day but don't relish carrying around a pump and having everyone ask me about it.  He**, I don't even know what the pump looks like or how one would carry it around.  This is all happening so fast.....

Any words of advice or caution? 

Thanks,

Andrea

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Comments

  • Steve444
    Steve444 Member Posts: 105 Member
    Port

    The surgery should be uneventful and you'll wake up with a new friend.  :). It's been a year and I still tap and fiddle with mine.  once it heals enough to take the covering off you'll probably be told to use wound wash and keep it clean.  I had issues with my incision healing and it turned green.  I had to get some antibiotic ointment and take good care of it, but it eventually healed.  The only thing that shows for me is what looks like a thick vein protruding from my lower neck as they attached the other end up there.

    i didn't much care for the pump as it made noise throughout the night and I couldn't toss and turn and sleep on my stomach as I usually do.  It was the source of some sleepless nights and I really looked forward to getting it removed.  It soon just became a new routine.  Go get chemo on Tuesday, go home with the pump.  Go back on Thursday to get it removed and then again on Friday to get a shot to boost white count.  I'd be pretty fatigued until a few days before the next two week cycle.  This is when I got used to sitting around staring off into space and bought some new comfortable headphones to listen to music and podcasts.  I started reading but after a few treatments found it more difficult to focus.  I'd bring a bag with a blanket, snacks, etc...

    The pump is typically a rectangle in a protective plastic shell an inch and a half thick and 6x4 or so.  It comes in a fabric pouch with a strap to wear like a fanny pack or over your shoulder.  I didn't much like to go out with it.  

    Hang in there, it's part of the fun...

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Hi Andrea , I'm sure it's all

    Hi Andrea , I'm sure it's all completely overwhelming.  I can't give first hand info, because my husband went through it all.  But, the port was an easy procedure for him.  Ha, I don't think he'd ever give up his port now.  he loves the port...no more sticks trying to get blood!

    as far as the infusion....plan several hours longer than that.  Lots of waiting, at least where my husband goes.  Is someone going with you?    My husbands pump was in a small bag that he wore as a fanny pack.  to be honest, he did hate it.  he would schedule chemo on Friday so he didn't work with it.  But we did have church and other stuff on the weekend.  He always wore a suit jacket to try to cover it.  The jacket would stick out a bit, but he felt more comfortable without it showing.  at night he put it on the nightstand and threw a towel over it so he wouldn't hear it.  it made a slight whooshing sound.  

    Good luck with it alL.  His first infusion was the hardest.   he felt fine, but it was kind of a shock to the system being there.  after the first time, we loosened up and enjoyed conversations with other patients and the nurses.  

    Bring a book or iPad if you have one.  

  • sflgirl
    sflgirl Member Posts: 220 Member
    Steve444 said:

    Port

    The surgery should be uneventful and you'll wake up with a new friend.  :). It's been a year and I still tap and fiddle with mine.  once it heals enough to take the covering off you'll probably be told to use wound wash and keep it clean.  I had issues with my incision healing and it turned green.  I had to get some antibiotic ointment and take good care of it, but it eventually healed.  The only thing that shows for me is what looks like a thick vein protruding from my lower neck as they attached the other end up there.

    i didn't much care for the pump as it made noise throughout the night and I couldn't toss and turn and sleep on my stomach as I usually do.  It was the source of some sleepless nights and I really looked forward to getting it removed.  It soon just became a new routine.  Go get chemo on Tuesday, go home with the pump.  Go back on Thursday to get it removed and then again on Friday to get a shot to boost white count.  I'd be pretty fatigued until a few days before the next two week cycle.  This is when I got used to sitting around staring off into space and bought some new comfortable headphones to listen to music and podcasts.  I started reading but after a few treatments found it more difficult to focus.  I'd bring a bag with a blanket, snacks, etc...

    The pump is typically a rectangle in a protective plastic shell an inch and a half thick and 6x4 or so.  It comes in a fabric pouch with a strap to wear like a fanny pack or over your shoulder.  I didn't much like to go out with it.  

    Hang in there, it's part of the fun...

    Thanks Steve,
    Sounds like a

    Thanks Steve,

    Sounds like a pain to carry around.  I intend to keep working so I may change up the dates so I have the pump on the weekends and not during work hours.  I really need to keep going to work, it's very distracting and keeps my mind busy.  I can handle fatigue, hope that's all it is. 

    I am just finishing recovering from the tumor removal in my rectum/sigmoid so unfortunately I get that sleeping on the back thing. So annoying, lol.

    I'll report back.

    Andrea

  • sflgirl
    sflgirl Member Posts: 220 Member
    jen2012 said:

    Hi Andrea , I'm sure it's all

    Hi Andrea , I'm sure it's all completely overwhelming.  I can't give first hand info, because my husband went through it all.  But, the port was an easy procedure for him.  Ha, I don't think he'd ever give up his port now.  he loves the port...no more sticks trying to get blood!

    as far as the infusion....plan several hours longer than that.  Lots of waiting, at least where my husband goes.  Is someone going with you?    My husbands pump was in a small bag that he wore as a fanny pack.  to be honest, he did hate it.  he would schedule chemo on Friday so he didn't work with it.  But we did have church and other stuff on the weekend.  He always wore a suit jacket to try to cover it.  The jacket would stick out a bit, but he felt more comfortable without it showing.  at night he put it on the nightstand and threw a towel over it so he wouldn't hear it.  it made a slight whooshing sound.  

    Good luck with it alL.  His first infusion was the hardest.   he felt fine, but it was kind of a shock to the system being there.  after the first time, we loosened up and enjoyed conversations with other patients and the nurses.  

    Bring a book or iPad if you have one.  

    Hi Jen,
    Thanks, I like the

    Hi Jen,

    Thanks, I like the idea of the weekends for the pump, sounds easier to manage all around. 

    Do you think I need someone to go with me?  I was hoping to handle it without imposing on someone else.  I'm single, have been for a long time, and generally just handle my own stuff.  The hospital is about a 45 minute ride from my house, hopefully I will be able to drive home.

    I do have a friend going with me for the port install today since they are putting me out a little (similar to a colonoscopy).  But I was hoping to handle the chemo on my own.

    I guess I need to wait and see how I react to it......

    Thanks,

    Andrea

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    You will love your port

    Well, I hope you will. It certainly saves the veins on your arms, and even though the needle they use is huge, if done properly, you feel nothing or nothing more than a quick prick. 

    Ask for a prescription for Lidocaine gel, and then ask them to spray you with Lidocaine spray before they access it. That really helps. You apply the gel about half an hour before your appointment. 

    The pump. I had problems with the batteries several times. Be sure to carry spares wherever you go. Mine ran out overninght a few times, and the alarm is... well... alarming. 

    I used to fix the tube in several places with sticky tape, because I often walked off with it on the chair beside me, and that pulled on my port, which was not good. I did not like wearing it, I will be honest. I lOVED unhook day, until I crashed, as it seemed that getting unhooked was one of my worst days. 

    I ended up wearing a pump all day every day for six weeks, and that is when I ended up wearing it as a fanny pack. It really was allot easier. 

    I know friends here, who, at night, still wear the pack around their waist. That did not work for me, so I put it on the bedside table. I purchased TWO body pillows, which I slept in-between. They kept me from rolling over. I had no problems with the (long) tube, at night. The only porblems I had were the batteries running out. 

    Oh, the other problem I had was that the port itself was placed right where my bra strap ran. I spent many a day braless, So 60's. 

    Good luck! The surgery/placement will go well. Look forward to hearing how everything is going. 

    Sue - Trubrit

     

     

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    sflgirl said:

    Thanks Steve,
    Sounds like a

    Thanks Steve,

    Sounds like a pain to carry around.  I intend to keep working so I may change up the dates so I have the pump on the weekends and not during work hours.  I really need to keep going to work, it's very distracting and keeps my mind busy.  I can handle fatigue, hope that's all it is. 

    I am just finishing recovering from the tumor removal in my rectum/sigmoid so unfortunately I get that sleeping on the back thing. So annoying, lol.

    I'll report back.

    Andrea

    Fatigue warning

    The fatigue can be dibillitating. I remember thinking I cuold handle being 'tired', but it is way WAY WAY beyond feeling tired. For me, it felt like I was a balloon deflayting. If I didn't make it to a chair, I would be literally crawling on the floor. Once, my husband found me half on the floor, half on the bed, because I didn't make it there in time. 

    It may not get that bad for you. But when I look back, I must admit that the fatigue was one of the worst side-effects that I expereince, and believe me, I had allot of them. 

    I think it is a VERY good idea for you to go to work just as long as you are able. I know there have been folks here, who have been able to work throguhout. I hope this happens for you. 

    As for going to chemo alone. I wouldn't have wanted to, but again, I saw people there alone so it can be done. I had a two and a half hour drive home, so my husband went with me all of the time. 

    Sue - Trubrit

  • jen2012
    jen2012 Member Posts: 1,607 Member
    sflgirl said:

    Hi Jen,
    Thanks, I like the

    Hi Jen,

    Thanks, I like the idea of the weekends for the pump, sounds easier to manage all around. 

    Do you think I need someone to go with me?  I was hoping to handle it without imposing on someone else.  I'm single, have been for a long time, and generally just handle my own stuff.  The hospital is about a 45 minute ride from my house, hopefully I will be able to drive home.

    I do have a friend going with me for the port install today since they are putting me out a little (similar to a colonoscopy).  But I was hoping to handle the chemo on my own.

    I guess I need to wait and see how I react to it......

    Thanks,

    Andrea

    You don't have to, it would

    You don't have to, it would just make the time go faster and would have some support there for you.  But to be honest, if it were me I would be ok taking a book and iPad and sitting alone.  My husband doesn't like to be there alone.  So just what is good for you.

  • danker
    danker Member Posts: 1,276 Member
    Chemo Pump

    I had a pump giving me  1 &1/4 ml fu5 per hour 24/7 for 5 weeks. Each week I would come to get my port flushed and my Chemo bag refilled. It wasn;t all that botersome!    We do what we must.  It was wothit! I have been NED( no evedence of disease) for over 4 years.  Good luck to you!!!~

  • Steve444
    Steve444 Member Posts: 105 Member
    sflgirl said:

    Thanks Steve,
    Sounds like a

    Thanks Steve,

    Sounds like a pain to carry around.  I intend to keep working so I may change up the dates so I have the pump on the weekends and not during work hours.  I really need to keep going to work, it's very distracting and keeps my mind busy.  I can handle fatigue, hope that's all it is. 

    I am just finishing recovering from the tumor removal in my rectum/sigmoid so unfortunately I get that sleeping on the back thing. So annoying, lol.

    I'll report back.

    Andrea

    To be continued I'm sure...

    I wasn't suggesting my dates, just relaying the schedule they had me on.  If I was working at the time I probably wouldn't want to wear it to work either.  You'll have to play it by ear, see what days your cancer center performs disconnects, etc...  You may want to keep a diary or jot down notes on a calendar to remind yourself how you feel or felt each day so you can better determine your individual pattern.  The effects of chemo peak and release throughout the week(s) and you may be able to adjust your schedule so that your good or bad days fit your days at work or home that make sense to you.

    Depending on what your chemo regimine is, there are typically more side effects than fatigue and they build up over time.  I didn't want to throw all that at you while you're already nervous getting the port installed.  :)

    As for going alone or with a friend, it's tough to say since we're all different.  Being 45 minutes away from treatment makes it tough to impose on someone for the whole day or to call for help if you need it.  I am lucky that my treatment center is 5 minutes away.  I did usually drive myself, but some days I was light headed and struggled a little with the short drive home.  Most days I was fine though.  At my center I see most people come with someone who stays with them until they go into the treatment room and then they come back when treatment is over.  I don't see many people sitting with someone in the treatment room except for on their first day when given their welcome packet and going through it for the first time.  My Wife only comes with me on the times that I see my doctor before treatment, as she usually has questions or concerns and I usually forget to bring them up or forget how much I struggled the week or two before.  She leaves after the chat with the doctor and then picks me up when I'm done.  The other visits I drive myself.

    Yours may differ, but at my center the day goes like this...  Show up, check in and wait to be called.  Walk back, get weighed, confirm the meds I'm on, measure blood pressure, get the tubes attached to my port, and give blood.  Get handed a cup for urine, hand it over and then get walked back to a room and wait for the oncologist.  Chat with the doctor for 15 minutes (or more if there are concerns or if getting results from a scan).  Get walked back to another waiting area until they're ready for me in the treatment room.  Get seated in the treatment room and get settled while waiting for a go ahead based on blood and urine results and for them to prepare my meds.  Depending on the cocktail you're on, I started with anti nausea for 20 minutes, wait for the beeps and a nurse to have time to connect the next two packs and wait for 4 hours, wait again and get get another drug for 1.5 hours which decreased to 30 minutes over the next two sessions.  Wait to have them prepare and connect the pump and release me to check out.  Wait my turn in line, get my next appointments and go.  Yours again will differ, but for me at least it was a long day filled with waiting and sitting.

    Anyway, sorry for babbling for so long...

  • John212
    John212 Member Posts: 116 Member
    Just my two cents

    I work from home - and didn't work a whole lot while I was in treatment - so I never had quite the same concern about being out and about when I was on the pump. Honestly, it looked a lot like I was carrying one of those old portable cassette recorders in a case with a shoulder strap. When I did go out with the pump, usually for speaking engagements, I just moved the pump around so that it lay across my lower back and was hidden by my sport jacket. It also fit well under a bulky sweater so I never felt that it was blatantly obvious. Sleep was never a problem for me as I was able to hang the pump over the bedpost closest to my pillow and let out all the pump line to give me freedom to toss and turn. Turns out, one of the people in my Toastmasters club works for the company that made my pump. We talked technical details for a while after one meeting. She was delighted to see her product in daily use.

  • Easyflip
    Easyflip Member Posts: 588 Member
    sflgirl said:

    Hi Jen,
    Thanks, I like the

    Hi Jen,

    Thanks, I like the idea of the weekends for the pump, sounds easier to manage all around. 

    Do you think I need someone to go with me?  I was hoping to handle it without imposing on someone else.  I'm single, have been for a long time, and generally just handle my own stuff.  The hospital is about a 45 minute ride from my house, hopefully I will be able to drive home.

    I do have a friend going with me for the port install today since they are putting me out a little (similar to a colonoscopy).  But I was hoping to handle the chemo on my own.

    I guess I need to wait and see how I react to it......

    Thanks,

    Andrea

    Hi,

    The American Cancer Society has a ride program that gives free rides to and from chemo. They might be able to help you. Good luck!

    Easyflip/Richard

  • sflgirl
    sflgirl Member Posts: 220 Member
    Steve444 said:

    To be continued I'm sure...

    I wasn't suggesting my dates, just relaying the schedule they had me on.  If I was working at the time I probably wouldn't want to wear it to work either.  You'll have to play it by ear, see what days your cancer center performs disconnects, etc...  You may want to keep a diary or jot down notes on a calendar to remind yourself how you feel or felt each day so you can better determine your individual pattern.  The effects of chemo peak and release throughout the week(s) and you may be able to adjust your schedule so that your good or bad days fit your days at work or home that make sense to you.

    Depending on what your chemo regimine is, there are typically more side effects than fatigue and they build up over time.  I didn't want to throw all that at you while you're already nervous getting the port installed.  :)

    As for going alone or with a friend, it's tough to say since we're all different.  Being 45 minutes away from treatment makes it tough to impose on someone for the whole day or to call for help if you need it.  I am lucky that my treatment center is 5 minutes away.  I did usually drive myself, but some days I was light headed and struggled a little with the short drive home.  Most days I was fine though.  At my center I see most people come with someone who stays with them until they go into the treatment room and then they come back when treatment is over.  I don't see many people sitting with someone in the treatment room except for on their first day when given their welcome packet and going through it for the first time.  My Wife only comes with me on the times that I see my doctor before treatment, as she usually has questions or concerns and I usually forget to bring them up or forget how much I struggled the week or two before.  She leaves after the chat with the doctor and then picks me up when I'm done.  The other visits I drive myself.

    Yours may differ, but at my center the day goes like this...  Show up, check in and wait to be called.  Walk back, get weighed, confirm the meds I'm on, measure blood pressure, get the tubes attached to my port, and give blood.  Get handed a cup for urine, hand it over and then get walked back to a room and wait for the oncologist.  Chat with the doctor for 15 minutes (or more if there are concerns or if getting results from a scan).  Get walked back to another waiting area until they're ready for me in the treatment room.  Get seated in the treatment room and get settled while waiting for a go ahead based on blood and urine results and for them to prepare my meds.  Depending on the cocktail you're on, I started with anti nausea for 20 minutes, wait for the beeps and a nurse to have time to connect the next two packs and wait for 4 hours, wait again and get get another drug for 1.5 hours which decreased to 30 minutes over the next two sessions.  Wait to have them prepare and connect the pump and release me to check out.  Wait my turn in line, get my next appointments and go.  Yours again will differ, but for me at least it was a long day filled with waiting and sitting.

    Anyway, sorry for babbling for so long...

    I love the babble, lol

    You're not babbling.  I love to know what's going to generally happen, it helps me prepare my brain for what's to come.  Thanks for sharing.

  • sflgirl
    sflgirl Member Posts: 220 Member
    Trubrit said:

    You will love your port

    Well, I hope you will. It certainly saves the veins on your arms, and even though the needle they use is huge, if done properly, you feel nothing or nothing more than a quick prick. 

    Ask for a prescription for Lidocaine gel, and then ask them to spray you with Lidocaine spray before they access it. That really helps. You apply the gel about half an hour before your appointment. 

    The pump. I had problems with the batteries several times. Be sure to carry spares wherever you go. Mine ran out overninght a few times, and the alarm is... well... alarming. 

    I used to fix the tube in several places with sticky tape, because I often walked off with it on the chair beside me, and that pulled on my port, which was not good. I did not like wearing it, I will be honest. I lOVED unhook day, until I crashed, as it seemed that getting unhooked was one of my worst days. 

    I ended up wearing a pump all day every day for six weeks, and that is when I ended up wearing it as a fanny pack. It really was allot easier. 

    I know friends here, who, at night, still wear the pack around their waist. That did not work for me, so I put it on the bedside table. I purchased TWO body pillows, which I slept in-between. They kept me from rolling over. I had no problems with the (long) tube, at night. The only porblems I had were the batteries running out. 

    Oh, the other problem I had was that the port itself was placed right where my bra strap ran. I spent many a day braless, So 60's. 

    Good luck! The surgery/placement will go well. Look forward to hearing how everything is going. 

    Sue - Trubrit

     

     

    Thanks Sue,
    You're

    Thanks Sue,

    You're funny! Maybe I'll go braless just for fun, lol.

    Everything went well.  It was weird, they used valium and kept me kind of awake so that they could talk to me during.  I was freaked out at the prospect but it went fine.  Home now and it's all starting to ache, so I think a percocet and bed is in order.

    Thursday is the beginning of the new paradigm.  I'm scared of the pump but appreciate everyone sharing their info and advice.  Just time to get on with it so I can get rid of the liver mets (hopefully)   I think they are putting me on Folfox but also mentioned Folfoxiri.  I will report back after Thursday.

    Thanks and the best to you all!

    Andrea

     

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    Hope your port installation

    Hope your port installation went well!  I hated mine .. first one was more sensitive for me ... my second the scar hurt more.  Both were well worth it and a blessing to have been there .. and removed!!  As for the pump .. I hated that as well .. it was noisy and kept me up at night.  I found keeping the TV on something calming like animal planet or national geographic helped me sleep with the nature noises faintly in the background.  Well, come to think of it, it may have been the steroid that kept me up.. but either way a constant reminder of what was happening.  I relished every disconnect.  I had immediate relief and felt less sick to my stomach on disconnect. There is no way I could have worked with it, my intention was to .. but that was a pure fantasy for me.  My DX was my last day to work .. I had a tough time with chemo. Fatigue, emotional, every side affect imaginable and then some.   Everyone is different though.  I am extremely sensitive and was to every drug given to me .. including the anti nausea meds. 

  • zx10guy
    zx10guy Member Posts: 273 Member
    Hope the port procedure went

    Hope the port procedure went smoothly.

    My comments are too late for you but hopefully will benefit others that come across this thread.

    If you're a woman, you need to make sure the surgeon accounts for the location of your bra straps.  For everyone in general, you should consider having the port placed on the right instead of the left if given the option.  Typically, ports are placed on the right but the reason I say to have it on the right is due to car seat belts if you drive a lot.  And heed the advice given for Lidocaine creme.  And make sure you apply the Lidocaine creme on your port covered by Tegaderm to allow the Lidocaine creme to numb the area.  You should apply the creme at least 30 minutes to an hour before going in for chemo.

    Here's my experience.  I despised the port.  But it is better than the alternative.  I had a complication on this simple procedure.  I never really got the full reason about why the port placement on my right chest failed.  I had to go back in and get it placed on the left side under radiological guidance to ensure the port was going in correctly.  While going through chemo, the nurses did try to numb the area with some freeze spray but it didn't work.  I felt every milimeter of that needle going in.  I then found out about the Lidocaine creme and used it immediately.  The creme solved the pain I was getting when the needle was inserted into the port.  The port placement put it right under the seat belt strap which caused pain and discomfort.  All in all I was greatful I had a port ot eliminate issues with a standard IV.  But I hated it causing me pain off and on plus the bump on my chest as a constant reminder of this nightmare.  When I completed chemo the surgeon was happy with what he saw and told me I could have the port removed after waiting 2 to 3 weeks.  I had it removed shortly after the recommended wait period.  The other issue was the saline flush always done on the port.  The saline caused a weird taste in my mouth to the point where I started to get pretty severe nausea.

  • skeets1961
    skeets1961 Member Posts: 56
    Hi SFLgirl,  my husband has

    Hi SFLgirl,  my husband has had 5 treatments so far and one of the things to be careful of is to not touch anything from the freezer or fridge without an oven mitt, or drink anything cold for a few days.  He describes it as it feels like frostbite.  If you are in a colder climate like we are, make sure you are dressed very warm and maybe even breathe through a scarf so you don't inhale cold air.  The pump is the size of a cross body purse with a strap and i agree with the others, its noisy at night it almost sounds like a phone vibrating every few seconds.  I go with my husband and stay the whole time.  The nurses even taught me how to disconnect the pump so i do it at home.  If you have a close friend that would do that for you that could save you a trip back to the office.  He gets severe fatigue starting the day of the pump removal and it lasts for about 3 days.  His treatments are every two weeks also.  How long you are there depends also if you have any allergic reactions where they might have to give you benedryl or slow the drip down.  He hasn't had any problems tolerating the initial drip so it goes fairly smooth but it still takes around 5 hrs.  He also sees the ONC every time he goes in for treatment.  Good luck with your journey.  Its different and still trying to figure out our new "normal".  Hopefully you will be able to get the ride to and from treatment in case you don't feel like making the drive.  Best wishes!

  • Coppercent
    Coppercent Member Posts: 158
    Chemo Bag

    Hope your procedure went well!  I carried the chemo bag to work. I would get chemo in the morning and go to work with it after lunch on Wednesday and go back on Friday for disconnect.  I only worked 15 minutes away so I could get disconnected on my lunch hour on Friday.  Mine came with a fanny pack and I carried it around my waist.  All of the tubing was under my clothes.  I just had to make sure I did not wear a low neckline because the connection would show.  My pump was a little noisy when it pumped but something you learn to over look.  I worked near my boss and she said after awhile she no longer noticed it. 

    I always went to treatments by myself.  I let my adult sons each go one time so that they could see that it was no big deal and not to be concerned.  The chemo nurses are awesome and attentive so I didn't need outside help.  The caregivers of other patients were very attentive too since they were bored and helping out with others kept them busy.   I always took a computer and work with me to pass the time but also not to get behind at work.  I used to joke and call it my pamper spa time.  I was waited on hand and foot, brought treats, given pillows and warm blankets.  Who could ask for more?

    Good luck!  Ask your medical team lots of questions and take each day as they come. 

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Hope your first infusion was uneventful!

    Just wanted to add that it's a good idea to keep an eye on the development of side effects, and report them to your doc and/or chemo nurses asap.

    I had an issue with dehydration that developed quite rapidly, and I got way sicker than I should have, because I didn't contact them right away.  I also headed into urgent care when I did finally break down and decide to get help, and later found out I could have just called the oncologoy dept directly and told them I needed to come in for an IV of fluids.  Once I got to the right people, they fixed me up pretty rapidly and I wished I'd gotten it on it sooner.  No need to suffer more than you have to!

    The other thing I had a problem with was neuropathy, and that was another symptom I should have discussed sooner.  Basically if you have it and it goes away between infusions, you're ok.  If it doesn't go away, that means you may be risking permanent damage.  So again, important to bring it up.  They can reduce the oxiliplatin which causes the problem, or even take it out all together, as it apparently doesn't add a huge % to outcomes.

    Good luck, and keep us posted!

    Hugs~AA

  • sflgirl
    sflgirl Member Posts: 220 Member

    Chemo Bag

    Hope your procedure went well!  I carried the chemo bag to work. I would get chemo in the morning and go to work with it after lunch on Wednesday and go back on Friday for disconnect.  I only worked 15 minutes away so I could get disconnected on my lunch hour on Friday.  Mine came with a fanny pack and I carried it around my waist.  All of the tubing was under my clothes.  I just had to make sure I did not wear a low neckline because the connection would show.  My pump was a little noisy when it pumped but something you learn to over look.  I worked near my boss and she said after awhile she no longer noticed it. 

    I always went to treatments by myself.  I let my adult sons each go one time so that they could see that it was no big deal and not to be concerned.  The chemo nurses are awesome and attentive so I didn't need outside help.  The caregivers of other patients were very attentive too since they were bored and helping out with others kept them busy.   I always took a computer and work with me to pass the time but also not to get behind at work.  I used to joke and call it my pamper spa time.  I was waited on hand and foot, brought treats, given pillows and warm blankets.  Who could ask for more?

    Good luck!  Ask your medical team lots of questions and take each day as they come. 

    Thanks!

    I'm glad to hear that you successfully went to work after chemo and with the pump.  I am hoping to as well.  I do not want this thing to own me.  I appreciate your insight.

    Andrea

  • John212
    John212 Member Posts: 116 Member

    Hope your first infusion was uneventful!

    Just wanted to add that it's a good idea to keep an eye on the development of side effects, and report them to your doc and/or chemo nurses asap.

    I had an issue with dehydration that developed quite rapidly, and I got way sicker than I should have, because I didn't contact them right away.  I also headed into urgent care when I did finally break down and decide to get help, and later found out I could have just called the oncologoy dept directly and told them I needed to come in for an IV of fluids.  Once I got to the right people, they fixed me up pretty rapidly and I wished I'd gotten it on it sooner.  No need to suffer more than you have to!

    The other thing I had a problem with was neuropathy, and that was another symptom I should have discussed sooner.  Basically if you have it and it goes away between infusions, you're ok.  If it doesn't go away, that means you may be risking permanent damage.  So again, important to bring it up.  They can reduce the oxiliplatin which causes the problem, or even take it out all together, as it apparently doesn't add a huge % to outcomes.

    Good luck, and keep us posted!

    Hugs~AA

    Keeping track

    I started a spread sheet to track my side effects, diet, and daily temperature readings as soon as I began chemo. This kept me up to date on such things as my appetite, fluctuations in temperature - I did develop a couple of fevers that we had to monitor - and side effects. Because I set up the spreadsheet as a Google doc, I was able to easily access it on my iPad whenever I visited my onc. I would then use the iPad to watch a movie during treatments.