5fu pump, turned off at home experiences?

Hi,  we don't have experience of Guy's Cancer Centre, but my husband has the 5FU pump, the district nurse comes to our home to disconnect. The chemo unit notify the district nurse of the timings the pump is connected, so the district nurse calls us the day she's coming to disconnect, then arrives around 46 hours after the pump was connected. The chemo unit send my husband home with a medical yellow bucket containing everything needed to disconnect and flush through his port. It's working really well for us. Hope you can get this set up too. Love Frances xxx 

Hi Em

I've just finished having folfox at home. I'm under the NHS at Guy's cancer centre. I've got a picc line and the district nurse would come to disconnect it and flush the line through. If the dressing hadn't been changed at the hospital, they'd do it. They also came the following week to change dressing and flush the line. The hospital gave me everything needed. They also arranged the first visit.  After my infusion at the hospital, I would ring the district nurse switchboard to ask that they come round after the time the pump would be finished. I live in Lambeth. Although they don't specify a time, it saves having to go to the hospital when you really don't feel well. 

Cheryl x

Hi. My husband had a district nurse come to our house twice a fortnight to flush he's picc line and to remove he's chemo pump at home we found this was more comfortable for him rather than having to travel to the hospital and wait around.

Hi Frances, 

Thank you so much for this. I would have replied sooner but the side effects from the chemo was a bit harsh and I felt more zombie like than human for a while. Happily feeling better now, quicker than after the 1st round so that is positive. I will look this up, however the nurse and I said on Friday last week to leave it for now as my pump takes a long time to empty. We gave it two extra hours before I got in but it still had some in it. And if it was to be set up at home, if it's not empty they come back the day after. Which isn't too bad I guess but it is nice to get it out as quickly as possible. I do hope it starts "speeding up" a bit so that I can look in to this and set it up though. Love, Em xxx

Hi Hayleyc89 

Thank you, I will hope to look in to this soon - for now my pump seems to be emptying very slowly so it's hard to schedule in nurse visits. Thank you again, Em x 

Hi Chalet, 

Thank you so much for this. It sounds like the NHS part of the Cancer centre has it better set up than the private part. Which is good, but not for me haha. I'm guessing maybe as they need to use companies to outsource this too and not district nurses which might be why it's less flexible for some reason. My pump emptied even slower the second time around (50h the first time, 51h second time) so the nurse in charge who "unplugged" me said that it is probably better to come in as long as I still feel ok as if the nurse comes to do it at home and it's not empty they won't come back until the day after. And apparently they can't confirm the time they will come either all the time, so they might come in the morning when it's not going to be empty until the afternoon anyway. I might look into it again if my pump stops being so..temperamental and slow :) Luckily the worst side effects haven't kicked in on Fridays so I feel ok going in so far, it's after I go completely zombie for a week or so.

Thank you so much again for your response. 

Em xx

Hi Em,

I also had a problem with the pump not going down. I rang the chemo unit and they gave me a WhatsApp number so I could send a photo. They then showed it to the pharmacist who thought about 20% was left. There was a lot of faffing about as I'd delayed the district nurse coming. When I rang to say the hospital had said it could be disconnected even if it wasn't empty, they then told me that they needed it in writing. The nurse on the chemo unit was great and sorted it. I couldn't believe it when the pump stopped on my next cycle. Thankfully it eventually went down but took a lot longer than it should have. I think it throws you a bit when this happens as you're not sure what to do. I fiddled about with the picc line and it worked. Hope it goes a bit smoother for you.

Cheryl x

Hi I have the pump removed the hospital ring and tell my nurses what time to disconnect and they are very good at sticking to it they flush line etc.

Would be lost without my DNs

Hi Em,

When I say I fiddled with the picc line, I mean the end bit and not the bit going into the vein. I wriggled the bit that touches the skin, that makes the pump work and retaped it. Also made sure there were no kinks in the line.

Cheryl x

Hi Cheryl,

I have a portacath so am a bit nervous fiddling with the lines on that - I did look them over last time though to see if they were connected okay and not "unscrewed" anywhere but didn't seem like it. Didn't get my 3rd round yesterday, my platelets are too low which surprised my oncologist, nurse and me. Hopefully be back on it next week (to be closer to being done). 

Thank you so much :) 

Em xx