Hi,
I am suddenly aware of what feels like a tube about an inch long and not sure if I should. I had a port put in with a central line they said. The tube seems to come from the scar above my collarbone then goes upwards towards my chin/jaw. It does not hurt but I don’t know why I have suddenly noticed it. The scar had been darker but now seems to have shrunk down slightly and looks pale. It has been in since May and I have had 2 lots of big knots come up and have to be cut off. Can they move, should they move? Not feeling like telling anyone incase they chop me open again but I have been having visual disturbances and feeling faint on my new treament and had this mad idea that things could be going the wrong way. Is that stupid? Any advice would be fab!
Lily x
Hi Lily,
I have had my port in now for about 21 months. Initially I couldnt feel anything except the bump of the port but after some time (can’t remember how long) I can trace a fine tube coming from the top of it to just below my collarbone. At the top of the bump there is a ‘knotty’ bit. I think the tube is tunnelled under the skin then drops down into the vein somewhere. I actually have only one incision just above the port bump but know others who have two, the second being in the neck. If you are worried next time it is accessed ask the nurse if it feels normal to her. You should certainly be mentioning the visual disturbances and fainteness to them.
dawnhc
xxx
Hi Lily
I have a hickman line fitted - and I have to say mine is clearly visible as a ‘tube’. It starts in my neck just below my jawline and is visible till it enters into my collar bone area. Several people have asked me why my ‘vein’ is so prominent !! then I have to point out that it isn’t a vein lol.
I had one incision in my neck, which although healed, is visible and the other incision where the line enters my collarbone…
I certainly haven’t had any of the other symptoms you describe such as visual disturbances/fainting etc - I would def discuss that with your nurse.
margaret x
Hi,
thank you so much for replying and that is definitely reassuring me. I bit the bullet and rang my trial research nurse and have been ordered in first thing tomorrow to have the port tested in the unit, a flush and bleed back they said. If they don’t like it I am being referred straight back to the vascular surgeon. Hope not! I only had my day 8 CMF on Tuesday and this appeared on Wednesday so may have moved it I guess. I hope it has just moved along the vein a little but I have to go and get harpooned to test it. My joke when they put the hubber needle in I say harpoon the whale! Really didn’t want to be back there already and can’t see straight so having to be taken by one of the kids!
The visual stuff and dizziness is a reaction I am having from the Cyclophosphamide and they are looking into it. Epi affected my ability to focus far too, so not new. The CMF hits me hard on the last 200 mgs so they now have to use a drip and drop it to the lowest speed but the bonus is almost no side effects following it.Such a relief after the 4th epi nearly had me giving up.
Thank you so much and I hope things are as well with you as possible, depending where you are in your cycle/treatment just now. Will post back if I escape tomorrow!
Lily x
Hope you get on ok tomorrow Lily.
I just had my line flushed and bled yesterday - have to say that’s the only downside to having the damn thing - I’ve had all my chemo etc (hence the knackered veins lol), so just on herceptin now. It’s bad enough having to traipse off to the hospital once every 3 weeks for the next year, but cos of line the visits are weekly now - I’ll have my own chair in the unit soon !
Good luck ! Let us know how you get on
Margaret x
Good luck tomorrow lily - glad you got attention really quickly.
Margaret can’t you get them to show you how to flush your own line? I have had 3 hickmans over the years and was always given the kit to do it. If I wanted the district nurse would have come in to do it but I reckoned I had more experience than she had lol.
Dawn
Oh I didn’t know I could do that Dawn - I’ll ask next time I’m in - thanks. It would be a lot easier, because I’m back at work now, and it’s a nuisance lol
Margaret
magz - I started flushing the line myself to save hassle - at first it was awkward - but it’s dead simple, takes less then five minutes, despite the hygiene palavar! Maybe you can ask about that?
Hi,
well it was a false alarm so no need to panic, thank goodness. They don’t know why it has moved but it is the tube that has moved along the vein, probably disturbed by my last dose. It is where they would expect it to be so said fine and I went off shopping and spent too much money in celebration!
Thanks again for the support at my time of need
Lily x
Hi Lily - good to hear everything is O.K. Trouble is when these things are so new to us it is really worrying.
Dawn
xxx
Thank you I worry about anything that changes these days!
Lily x