I’m about to start 12 months herceptin treatment and had a hickman line inserted last week. Any advise on dos and don’ts will be gratefully received!
I’m not sure how to wash and washing my hair is really difficult. Sleeping is also difficult as I’m scared I’ll catch it on something or rip it out in my sleep.
What type of exercise can I do? I’ve been taking a lot of yoga classes but at present I am frightened I’ll disturb it by stretching too much.
I’ll sure I’ll get more relaxed about it over time but until then I’d love to hear how other people have coped.
Calyco
Hi Calyco, I had a Hickman line inserted after they removed my PICC line due to blood clots. Was inserted on the 13th November.
i have mine redressed each Wednesday and the nurses gave me a bunch of showerproof dressings to to use so can have a shower then (got no hair to worry about!). I normally wear one of these genie style bras at night and you can tuck the wiggly end into the bra to stop it from moving. I also like to coil the line round a couple of times before putting on the dressing, if I did catch it then I would not pull the line out.
not ideal things to have but quicker for ttreatment
kay x
Hiya…I had a hickman inserted last year…just a word of warning not to do what I did…after 4 weeks I did not feel v well and put it down to chemo…it wasn’t…I has developed a systemic infection due to hickman… I ended up in hossie for a week because I ignored the symptoms which were…sickness…dizziness and headaches…was also v red around site where hickman was inserted…ended up having to have it removed…I was advised that I should’ve reported it straightaway and I would’ve been able to keep it…would’ve been given antibiotics…it was a lot easier than playing hunt the vein every 3 weeks…not everyone gets an infection…doc said I was just unlucky!!!
Hi Calyco, I also had a Hickman line (for chemo) and it was a godsend. A district nurse came and flushed it through twice a week and changed the dressing - a clear one that was sticky all over that was kept on permanently. They coiled the line before putting the dressing on and just left the clamp and end bit sticking out the side or bottom. This meant I could shower as normal and the water didn’t get into the dressing. At night I just used a bit of micropore tape and used it to stick the dangling bit to me or the dressing - I didn’t need to wear a bra in bed. If ever the tape came loose, I couldn’t pull the line out because it was coiled round and stuck under the dressing! Apparently the tissue knits around the collar that’s just under the skin and that takes about 3 weeks, so after that it’s less likely that you could pull it out unless you really tried hard. When mine was removed - which was painless - they had to dissect the tissue from around the collar before they could pull it out.
I was told I couldn’t immerse the Hickman line in water so bathing and swimming were out, but once it settled down and I got used to it (probably took a couple of weeks) I was able to do pretty much everything else.
Sorry, I can’t comment re exercise as I had mine for chemo and I’m afraid that was the last thing I felt like doing!
I hope you find the line as useful as I did and good luck with the rest of your treatment.
xx
thanks for all your comments.
When I asked for dressings to use in the shower I was just told “don’t get it wet” and not given any. Washing my hair was a bit more successful today but I guess I’ll have to get used to washing at the sink.
I had to have my dressing changed after a couple of days because my skin reacted to it. The nurse coiled the tubes up and has taped them.
I get so frustrated with the lack of information provided by the hospital.
Hi Calyco - not sure about exercise with a Hickman but why don’t you give the helpline a call? Or otherwise you can email and get an answer from a BCN. I’ve found them really helpful.
Nicola x
Hi Calyco
Like you, I also had a reaction to the initial dressings, but I was then given Cavilon cream (which is a barrier cream i think) to gently rub in first and then a hypo allergenic dressing was applied (clear, a bit like sticky cling film) and was fine with that. Having the dressing meant I had freedom to do most things and could still keep an eye on the entry point as it’s important to keep any eye out for any oozing or redness at the site as that could indicate an infection.
Not sure what your regime is re flushing it etc, but it might be worth you asking them directly for the dressings if you think it’d make your life easier.
Good luck, whatever you decide.
x
Hi Calyco, think they are called Mepore dressings. I bought a couple from Sainsburus pharmacy and took with me to clinic. The nurse went and found some for me
good luck
kay x
thanks again for all your comments. I saw my oncologist yesterday and he organised some dressings for me. I was also given a bumper bundle of stuff for the district nurses which I should have been given when the line was inserted. Also had the stitches out and it is a bit easier to live with now.
Have been trying to work out what to do over Christmas as my weekly flush is due Christmas Day and I was hoping to go away for a short break. Will probably be able to cope by changing the dates of when the district nurses visit but it raises the question of it is possible to go on holiday during the next year.
It was bad enough commiting to herceptin treatments every 3 weeks for a year but I hadn’t realised I’d had weekly flushes to contend with too.
Hi Calyco, glad things are improving for you and glad you’ve got some dressings etc now. I know some people flushed the line themselves and I have to be honest and say that if it hadn’t been for the fact that I felt crappy coz I had it for chemo, I would have done it myself too. Certainly would have saved time waiting around for district nurses etc. Would be worth asking them for advice as am sure they’d be happy to show you how to and also re feasibility of holidaying - can’t see it being a problem in the UK but not so sure about overseas as you’ve got an increased risk of infection so you’d have to check if your travel insurance would cover you. Also, if you went somewhere hot remember you can’t go swimming! X
I had assumed I would be taught how to flush the line but my oncologist wasn’t keen on me doing it myself over Christmas. May be once I’m used to living with the line the district nurses will show me what to do.
Tried yoga today and it wasn’t easy. I do a beginners class and about 50% of the class was out of my comfort zone. The teacher is very good and works with cancer patients so she was able to warn me when she thought I shouldn’t try something. I discovered that sit-ups will probably be out of the question - not that I’m complaining! My main aim is to lose the weight I put on during chemo so I can fit in the dress I bought for my brother’s wedding.
It still isn’t easy washing my hair but I guess I’ll just have to get used to it, otherwise it’s going to be a long year.
Hi
I had a Hickman Line in 2007, and really didn’t get along with it. A holder for Hickman Lines is now available , and it comes with a showerproof holder www.centrallineholder.com
Best wishes
x
I had Hickman line too - you have most of the advice you need but I would just reinfocre that, once it is established, it will not pull out just cos you catch it on something. It is designed for you skin to “knit” to it (unlike a PICC) and you will need to be cut to get it out (anaesthetic will be given). My surgeon decided to pull mine out so he didn’t have to cut anymore - he almost had to stand on me like in some kind of comedy tooth extraction. It was weird but it did not hurt, but I don’t think that method is common - he just needed to save that bit of skin. I was repeatedly told that no dressing is really needed once it has settled in, but I chose to keep one on to keep it clean. Good luck.
Hi everyone, I have just had line inserted and wondered if any of you have been able to go on holiday, in the UK? We have a holiday home in Scotland and really want to visit there. Have heard some places you can arrange for them to look after line if set up before arrival and have temporary GP there which I have? Appreciate any guidance. Thanks.