People with acute leukaemia begin their treatment by having so-called Intensive chemotherapy, involving daily intravenous infusions of chemotherapy drugs while staying in hospital’. To avoid the need for having needles put in their arms repeatedly, most people who need frequent intravenous drugs have a central line installed in a vein in their chest, arm or groin, which can stay in for the duration of treatment. Of the several types and makes of central line the most commonly used among the people we saw was a Hickman line. The central line can also be used for giving other types of treatment such as antibiotics, as well as taking blood samples.
Insertion of a central line is a minor surgical procedure usually done under local anaesthetic but a few people were also given sedation and some were given a general anaesthetic. Some people found the prospect of having a central line fitted scary, especially if they felt unwell and were still in shock from receiving their diagnosis. This problem was made worse if the procedure was not well explained to them. Waiting to have it done occasionally delayed the start of treatment. Having hers fitted made Claire realise how ill she was.
John is retired. He is married with no children. Ethnic background: White British.
And the second thing was getting a Hickman or central line fitted. The doctor said that if they put chemotherapy through my normal veins, and the other things such as platelets and other transfusions, they would eventually show the effect of continually being used. So what they normally do for patients is to give them a central line which goes through the neck and in to their chest. And that leaves you with a couple of tapers with valves on the outside of your chest. It leaves you with a scar so that everybody knows that you’ve had leukaemia or one of those things. And that was interesting because that was treated by the nursing staff and doctors as a matter of fact incident, something that would happen easily. And for somebody who’d not been in an operating theatre, somebody who’d not been asked if they’d wanted anaesthetic or a sedative, simply sedated, it was quite unusual.
But also you become very health alert when you’re told you’ve got leukaemia and it makes you alert to everything else which is happening in the hospital. You’re basically looking after your body and looking after what your body might receive in terms of infection, so you’re very very careful and very concerned.
So I was sort of whisked off to an operating theatre where they fitted the Hickman line. And again there’s a sort of a nice casual and informal approach but that sometimes ignores the fact that you actually are having a procedure which is dangerous in itself. And so in a state of high anxiety that you’re in hospital, you’re being treated for leukaemia, you’re going to have chemotherapy, there’s another dose of high anxiety, which is you’re having a central line fitted. And perhaps patients aren’t prepared for that as well as they should be.
Some found having a central line fitted quick and easy; for others it was unpleasant or painful or the doctors had difficulties doing it. Similarly, removal could be quick and painless or difficult because skin had grown around the insertion site. Removal is done under local anaesthetic. The line is gently pulled out after cutting away any skin that is obstructing it. The procedure usually takes only a few minutes.
Brian is a Research Consultant in the voluntary sector. He is married and has two adult children. Ethnic background: White British.
Oh yes, there’s a bit I forgot actually, because the other interesting bit of the experience was they told me that I would have four cycles of this chemo, but also, because I was going to have so much chemo, and also they were going to, obviously, be taking blood samples all the time, they need to put a line into me and this is, well, it’s called a Hickman line, and what they did was, they drill a hole into your - and it sounds nasty this, it’s not drilling -they basically just put a hole into your chest and they take a line up, a plastic tube it is, under the skin, over the collar bone and down into the jugular vein. It sounds horrific, and when you hear it you think, ‘What’s that going to be like?’ But in fact they put it in under a local anaesthetic. I was awake throughout, I didn’t feel a thing. It was again, quite an interesting experience because I’d never had any of these sorts of things before.
And it went in, and they dressed it all up and really, I mean I lived with that line for the next six or seven months, and it became part of me, and I even became completely unaware of it after a relatively short time. Looked a bit odd but it was, you know, I didn’t have any problems with it.
I do know that some patients do tend to reject the line and if that happens they have to take it out and re-do it, and that can be nasty. In my case, I didn’t have any problems, and I’m sure, I think it does vary from individual to individual, it became a part of my body, and in fact the worst bit was taking the line out again six months later, because they couldn’t get it out, the flesh had actually grown around the line and they had to cut down with, again, with a local anaesthetic, and sort of cut around the line before they could pull it out.
The line and the insertion site need to be cleaned frequently to avoid it becoming blocked or infected. Some people said they became aware of when it needed cleaning and reminded the nurses to do it. Others learned to take care of their line themselves. Some became expert and took control of this aspect of their care rather than let inexperienced staff do it. Neil let a junior doctor, who was learning about central lines,clean his line and the doctor asked Neil if he had flushed the line correctly. Ann still had her line in during a period at home and preferred to flush it out herself rather than travel to the hospital just to have it cleaned.
Dianne is a retired HR director. She is married with no children. Ethnic background: White British.
And how did you feel about having that Hickman line all that time? Did that bother you?
The Hickman line was a constant reminder really because you have to make, I found with the hospital that I was in, they were very keen to make sure that you took responsibility for your own Hickman line. Now some people can do it and some can’t but I would flush my lines to, because I had a Hickman with three tubes coming out, some only have one, some only had two. But if you keep it clean you’re less likely to get infections. And of course, you have a little hole here where the tube goes in and that never really heals, it’s just a tiny little hole where the tube goes in. But it’s really important to keep that clean and so I would do that myself with the wipes and things that the hospital gave you. So every day, two or three times a day, I would just keep that clean because that’s how the infection sometimes can get in. But it can be quite painful because it is like an open wound really and you do get left with a scar but there’re far worse things that can happen to you than just having a scar.
But I found it was quite useful because particularly when I was home for four, five, six days. Every day you need to clean the lines, change the valves on the lines, and I was quite happy to do that. It’s not for everyone, you know, if you don’t feel like doing it then that’s absolutely fine, you can get a district nurse in to do it. But for me it just felt that I was sort of managing it and that was fine.
Important thing is to keep it well taped up so that it doesn’t stretch the little hole, because that can be painful if it’s not properly taped when you sleep you can move it and then you wake up because it’s really hurting so. But as I say, for me it was, I’m not squeamish at all, for some people it might be a bit squeamish but you do get used to it.
Infection of a central line was common (see ‘Infections and other treatment complications’). If an antibiotic didn’t control the infection, the line was removed. A replacement line was fitted if much more treatment was still to come. Julie initially had lines inserted into a vein in the groin, removed every time she went home, but they were eventually replaced by a Hickman line in her chest, which she found uglier and harder to hide but it could stay in when she went home.
Some people were self-conscious about how they looked with a central line in place and kept it covered, which restricted what clothes they could wear. Keeping it dry was important so swimming was not advised. Some found the central line uncomfortable; it was important to keep it well taped up so that it didn’t get accidentally pulled while sleeping. The central line and the scars it left were a reminder of the illness. But most people said that the disadvantages were far outweighed by the benefits of avoiding repeated jabs with a needle.
Jim is a video game designer. He is cohabiting with his partner and has no children. Ethnic background: White British.
And the same day I had to start chemotherapy. That meant putting in a PICC line [peripherally inserted central catheter], a central venous line, which was actually one of the cooler and more pleasant experiences of having the chemotherapy. I had a very nice specialist nurse who only put in these PICC lines, that was her sole job. And she put it in with no pain. Tried to go in the first time and didn’t go in through a fantastic vein so had to find another one, which left some bruising which, bruises when you’ve got that much leukaemia take a long time to heal and don’t look particularly nice, but other than that it was just cosmetic really. But the PICC line didn’t feel anything. All your drugs can go straight to your heart and then be pumped away around the body. And it’s definitely the nicest way to have toxic drugs put into your system, without a doubt, don’t have to think about it. It doesn’t look unsightly. It was comfortable. Make sure you put it on your arm that you don’t use all the time. But it doesn’t really get in the way other than showering, when you have to wear an arm band, which is a bit funny. You’ve got to keep the thing clean. Always make sure that someone wears gloves and cleans the thing properly when looking after you.