I think they would have put the PICC in before the first treatment, but with all the problems caused by snow and the holidays, the chemo nurse said at the assessment that they would start me without. The nurse who administered FEC1 also said I needed a PICC before going further, and called a senior colleague to double check and give me an appointment.
I have trouble with adhesives, which I have mentioned and will mention again. After a while, any adhesive will irritate my skin. Nothing has been said so far about things like flushing–I can’t see my OH managing to do this. We’ll have to see on Thursday.
How long did it take to insert, by the way? I have an early appointment, and I hope there won’t be a long wait beforehand.
My hair is still falling out, especially when I wash it, but it isn’t obvious yet to look at.
Cheryl, it took maybe half an hour, but most of that was them preparing to insert it, scrubbing up etc etc - the line itself was done within ten minutes. It was all very relaxed, I had to put a gown on my top half, but was allowed to keep my jeans and boots on (!), though I do know other people have had to strip down to knickers and a gown, which seems a bit overkill… ask if you can keep your bottom half dressed!
The dressings can be a pain - I still haven’t found one that really suits my skin - but I did find the initial absorbent dressings were the worst - they totally bonded with the skin on the inside of my arm, and I ended up having to cover a raw strip with clingfilm before re-dressing. I’ve got C-view dressings on at the mo, which still make my skin a little red, but don’t seem to ‘bond’ in the same way - and there are still dressings I haven’t tried, so will keep on plugging away at it until I find one that works better! I’ve never had a problem with plasters, or the blue work plasters, but these sterile dressings don’t like me! The big ones I had after mx also caused a red reaction, but the itch I can deal with, just don’t peel my skin off too, please!!!
If your OH isn’t up to job of flushing it, then generally either the district nurse will come out (daily at first to change dressing), then once a week to flush the line through - or you might be asked to go up to chemo ward to have it done. Doesn’t take long, and is really very straightforward. Despite my friday night panic!!
Hopefully you won’t have much hanging around before insertion - I had to be there for half eight, appointment was at nine, and because I was first one there I didn’t have to hang about at all - fastest hospital appointment EVER!!
I’m sure I can stand 10 minutes of almost anything. Thanks!
Looking over the information they gave me, it says ‘the nursing staff can teach you how’ to care for it, so perhaps I can do it on my own. I’m right-handed and the PICC will be in my right arm, but I can do a fair number of things with my left hand.
I also have had general redness and irritation from sterile dressings.
I’m due to have FEC2 next monday and had the 1st one just put in intravenously, with the nurse using syringes. i had a little vein pain in the arm they put it in last week, but not too much. reading about the PICC line makes me wonder if i should ask for it BEFORE i get vein damage. No-one has suggested it or even mentioned it, i only know what i have read here.
Hi, I had a PIKK line put in early Dec just before Fec, I personally am very pleased I had it put in, its easier to have the chemo and have blood tests done. My husband cleans it once a week for me too. It did ache for the first 2 weeks and you do have to be careful keeping it dry. I bought one of those Limbo plastic sleeves for when I have a shower/bath and think its definately worth the money, £12 i think it was. The nurse and a friend of mine who is a chemo nurse both recommended having the pikk line so that was good enough for me to have one. good luck with whatever you decide on Ness xxxx
I asked for a line as soon as I heard chemo mentioned! I am a nurse and know I have “shy” veins, the only thing that frightened me at the beginning was the thought of many goes to get blood or canulae each time. The oncologist arranged for me to have a hickman pre chemo, I could care for it myself as I already have the skills but elected to see the district nurse just for the weekly human contact. I can shower with the line in and have managed the dressing changes as necessary, can’t go swimming or soak in a bath but that’s not much of a downside for me!
Had my 2 nd FEC thurs, as had a line, all things speeded up was in and out in 75mins, a benefit I thought.
Hi there. On the point of picc lines, I have had a port catheter inserted under the skin below the collar bone. I was uncomfortable for about 3 days afterwards but was then ok. I had a local anaesthetic plus a mildnsedative. It was great for administering chemo and taking bloods. I didn’t feel a thing and could just get on with eating (as eating like a horse at the moment), reading etc. The only thing i don’t like is that it looks horrible as it protrudes from under the skin so I keep a plaster over it.
I am on day 14 and still have my hair so am hoping the cold cap has worked. It has taken until day 8 to feel properly human, though managed small things prior to this. Had friends over on the weekend for curry take away which tasted delicious and I managed a glass of fizzy. Also made it out for lunch with 2 girl friends and again really enjoyed my food.
Well done Jane for getting through your 1st fec. I have enjoyed the chat about singing, it’s nice to read about something other than this very inconvenient illness. I look forward to the birth of a bc choir from this thread. I would offer to join but even my 5 year old who loves me dearly tells me to stop when I start singing in the car.
Take care everyone and good luck to all those with treatment this week.
Hi everyone, I’ve got my wig now. Let’s just say that it matches my hair colour about 10-15 years ago, when I had highlights out of a bottle, rather than nature’s own.
The very nice fitter asked when my own had started to fall out, and told me it is likely to take a couple of weeks. She suggested that once it becomes too thin or patchy I might want to shave the rest, since as long as you have even a little hair, a wig tends to slide a bit. Of course I could wear hats and scarves until it’s all gone as well. She trimmed the fringe to eyebrow length to provide some camouflage there. This brand can be adjusted to fit a little more tightly if the elastic starts to stretch.
I’ve seen a couple of the ports in situ on other women on this site (clumsy sentence, sorry, wrist slap from english teacher!) - and I would think they would be ace for anyone who is going on to have Herceptin - but more of a major insertion job than a PICC if only (‘only’, get me!) having six lots of chemo. If I’d been HER+ tho, a port would have been my choice.
Congrats on your wig Cheryl i bet you will look fab in it. I haven"t gone down that route yet… I think i said it to you before that i am still in denial re it falling out!!
I have got myself a few scarves… just in case!!!
Take care
Kaz x
Good point Sophie about the port. I wasn’t given a choice and it was pretty uncomfortable for 3 to 4 days after. I am not having herceptin so just the 6 Feds then radio therapy (which I don’t need a port for). It was a lot of disruption for 6 Fecs in hind sight. The only advantage though is that it scores pretty highly on the hygiene scale so less risk of infection from what I understand. So from that angle I would have still gone with it.
I suppose my advice to others considering the options would be to get the pros and cons of each from your onc (and others) before making a decision. I didn’t get that so didn’t know there were alternatives. It was in the early days of my diagnosis when everything was just happening to me. Where as now I feel I have a bit more knowledge and confidence about asking more questions and being more assertive.
I have just re-read stay calm and carry on’s message again and it has emphasised to me how the treatment differs between us all. Whilst I appreciate that we are all individual cases and require individual treatment plans, surely when it comes to administering chemo we should have all been given the information for all options along with recommendations on the most appropriate method for our own case.
I have learnt an awful lot from this thread and from other parts of the site. But it is a pretty poor that we have to ‘network’ to get the the important medical information.
From now on I am going to have a few stock questions for my onc such as ‘what are the alternatives’. I would like to be really cheeky and take my ipad in with me and look up whatever the topic is in front of him.
Sorry for my moan but it does annoy me when people are not given a choice especially on something pretty basic.
Den42
Ps if anyone wonders why I am awake at such an ungodly hour, my son has a sickness bug and whilst my oh has been great at comforting my son all night (he is sleeping in the room with him) it is still me who has to go in with the dettol spray and provide clean towels and bedding!
I think ‘what are the alternatives?’ or ‘are there any alternatives?’ are reasonable questions.
It is also worth remembering that we have to give consent to treatment, and every treatment has advantages and disadvantages. If we aren’t sure or are worried about disadvantages, we have a right to ask why it is being recommended. The Onc I last saw explained the difference chemo would make–nearly 10% gor me–before asking me if I agreed and was ready to sign the consent form.
The PICC and Hickman lines are mentioned in the literature I was given, but were only recommended for me when I got as far as the chemo nurses, and they looked at my arm before recommending a PICC.
I asked if it was really necessary; in the end 3 experienced chemo nurses gave the same advice so it seemed unwise to ignore them.
My next Onc appointment is this morning, so I’ve written down the SEs I experienced with FEC1, mild as they were, and a question or two.
I asked for a PICC from the start, and they were prepared to put one in. When the Chemo nurse, very experienced with cr*ppy veins, looked at my arm she said I had three good veins they could use, and to go with them and get the PICC later if I needed to.
First Fec she found vein with no problem first time, it didn’t even hurt, and so far no SEs at the site, so hoping to keep going without a line, fingers crossed.
I think now that if I have one it’s going to make me feel more like a Patient, I’ll cross that bridge when I come to it!
Hi again. I am wondering if I have a bug as I just have’t felt right since yesterday. I was feeling so good up until then. Is it normal to have good and bad days?
I am on day 15. I don’t think have my son’s bug he was very poorly last night and I am not like that. I could just be very tired as my daughter is teething badly as well. Honestly, there is just not time for me to be I’ll it is so inconvenient!
Hi Den, I’ve certainly been up and down. Tiredness could easily do it, and perhaps your red blood cells haven’t quite recovered yet. I’ve found I need to rest a little longer than normal for even mild exertion.
Hi Den. Hope your son has recovered. Clearing up after that isn’t good when you are feeling normal! I still felt a bit off day 13/14 and resorted to sickness medication. I put it down to the fact I had had anti biotics in hospital and that had upset my tum. I think with what our bodies are going through it’s likely that we get the odd se’s even on our good weeks. Hope it’s not the bug anyway. Sounds like you have been cautious and armed with the dettol spray. (I am hating the smell of that.) Iam now paranoid about bugs since going to hosptal and have been spraying door handles etc.O H is getting worried that I might spray him when he comes through the door.
Den, just take it as easy as possible - could well just be a ‘down’ day, but judging by the night you had, well, I think you’re entitled to feel cr*p today!!
Going back to PICC, I do know some people have said that having a line permanently in place would make them more conscious all the time of having bc, and that is a fair comment. However, for me I kind of felt the bald head was a somewhat bigger reminder!!! Again, there’s no right or wrong decision here, but I do feel we should all be given all the information required to make an informed decision - and I hate to hear of women who either aren’t given the info at all, or are railroaded into a decision that might not be best for them, but more convenient for their docs/nurses. For some it might be being pushed into having a central line when they didn’t really require it - because there is no question that the chemo nurses’ faces light up when they spot mine… so much easier for bloods and administering drugs… but it won’t be for everyone.
It’s the same with all aspects of treatment - we should be given all the info we need to be informed - from path reports to stats to literature on side effects and different drug regimes… yet few of us are even offered the information until we push. We are all adults, all responsible women, and I do wish that the bureaucracy surrounding hospitals would treat us as adults unless we ask otherwise…