Hickman line insertion (maybe not for the squeamish)

Wednesday 15 June: I had to be at the hospital for 8:30. As usual, I was running late, but got there around 8:45 to be met with a worried Receptionist saying my file wasn’t there; she thought it was in the Renal department. She couldn’t go to fetch it as she had to remain at the desk. I offered to go, but of course that wouldn’t be allowed, even though I used to do that job on another ward a few years ago. It arrived eventually after a bit of fluster. Not quite sure why but it was with my kidney consultant or his secretary, even though I haven’t seen him since 5 April and I was only at the Myeloma clinic at the end of May. Ho hum…

I had been told that the Radiology department provide a list of patients, but don’t tell the Haematology department in which order they’re going to see them, so it’s a case of waiting to be called. I’m not sure if this is one-up-man-ship, arrogance, inefficiency or sheer indecision, but it’s damn annoying for the patients.

Talk about quality of life… Sitting around for hours, admittedly I was on a very comfy chair, but my friend’s chair was a small wooden thing, much less comfortable than those in the waiting area. Grrrrr…!

Not only that, but it meant that if my consultant did turn up to speak to me in response to the email I sent her the other day (see The Backwardness of Writing), I totally missed her as I ended up going up to Radiology around 12:00! More Grrrrr…!

A porter came to take me up to Radiology in a wheelchair. If you’ve read the previous post, you’ll know I cycled 20.5 miles the day before, so felt quite capable of walking along a corridor, up in a lift and along another corridor. I mean, I’m not an ill person at the moment! I figure the less hospitalised, institutionalised and disabled I am made to be, the better. Fortunately, the porter agreed with me and simply accompanied me with the wheelchair carrying my notes, the Hickman line boxes and my handbag – might as well make use of it!

The procedure to fit a Hickman line consists of lying on an x-ray table/bed, with my head tilted to the left most of the time, lower garments on but a gown to cover my upper modesty, jewellery off, nose ring taped and my hair in a hair net. No pregnancy test this time, just a disclaimer I had to sign to say that there was no possibility of me being pregnant. LOL!

I had to have quite a few very sting-y injections of local anaesthetic in my neck and chest/upper breast area. And they always say “just a slight scratch” – blinking liars! It hurts! They have an enormous screen hovering overhead which allows them to view the ultrasound and x-ray pictures while they work under the skin. It’s all very clever!

The consultant was very friendly and clear, explained the procedure in full before we began and kept checking with me. And the two radiography assistants/nurses were sweet, both held my hand at different times, although one of them chewed gum throughout which I thought was rather unprofessional.

They have to insert a tube into the lower part of my neck, immediately above the collar bone, which accesses my jugular vein. Then it tunnels down under the skin to exit just above my right breast, with two small tubes called lumens hanging out. It’s these tubes that are used for taking out and putting in various fluids over the next couple of months. The rest of the time, they’ll fit neatly in my bra.

The process sounds quite simple, doesn’t it? They warned me there’d be some tugging, pushing and pulling… They weren’t kidding! It was a very odd sensation. Not painful exactly, definitely more than mildly uncomfortable, but bearable. I did cry at one point, but that was less about pain and more about the emotions of what having the line means and what’s to come. That’s when one of the lovely women held my hand. I don’t know if I have a vulnerable look about me, but people do seem to want to hold my hand… It’s very comforting. I think after some weeks of almost forgetting, this was a very real reminder of the seriousness of what I’m facing.

After about 30 minutes, it was all over bar the bruising, at which point I could see the x-ray of my insides showing the inner tubing by my ribs on the huge screen. It looked quite good – nice clear picture and a lot less squeamish-inducing than the photo below. I asked the radiographer assistant if it might be possible to have a copy of my x-ray. I told her I am writing a blog about my experience and would like to use it for that. She said she wasn’t sure but took my email address and said she would enquire with the IT people. She didn’t sound very certain and muttered something about data protection… Hello!!!! It’s MY data we’re talking about here! Dare I say Grrrr…. again?

If by any strange luck, they do actually send me the x-ray photo, I will add it here later.

I had to go back down to the Day Case unit before going home. So we had a bit more fun and games with the radiographers wanting me to wait for a porter and go back in the wheelchair and me saying no. Fortunately, they weren’t fighting their corner very strongly and eventually I persuaded them that I would walk, my friend would push the wheelchair and I promised I would get into it if I was overcome with faintness. I can understand that some people might feel a bit unsteady after such a procedure but I was/am determined not to be a disabled person wherever possible. There’ll be time enough for that down the line.

Downstairs, the nurse cleaned up the wound, showed me the stem cell extraction machine I would be using in a couple of weeks and explained what would happen the following day. I told her I had been hoping to speak to one of the consultants about the pros and cons of transplant, but she confirmed that neither of them had come to see me and that now both of them were in meetings, but I could wait if I wanted to… I don’t think so! It was now 1:15pm. I’d been there 4.5 hours. Enough already!!! So they released me and I took my friend out for lunch before going home.

Funny how quickly the anaesthetic wears off! I took cocodamol every four hours for the rest of the day and felt so weary when I got home, I fell asleep for a couple of hours on the couch, yet still managed to go to bed around 10.

It’s very odd to actually see the tubing under my skin. I’m writing this as the bruised feeling is waning, so am able to be a bit more objective about it. If I touch the entry and exit wounds (through a dressing), it still feels bruised, but not a constant now. If I stretch or turn my neck, I’m suddenly made aware of it pulling, but otherwise I’ve not had any problems. The first night I slept ok, if slightly stiffly – scared of moving too much in case it hurt. Driving has been a bit painful as the seat belt touches exactly on the neck wound, so when I drive, I do so without a belt on.

I was still putting cream up my nose till Saturday, but that’s no longer necessary. On Thursday morning I had to wash using a flannel at the basin, with the antimicrobial wash of course, but now I have a clear see-through waterproof dressing which I can change daily, so I can shower properly. You can clearly see the entry wound and a fair bit of bruising around it, with a delightful blue stitch that perfectly matches my navy wardrobe! The stitch will come out next week.

The lumens are quite short and dangle down by my right breast, which feels very strange when I walk around the house without clothes on – like having one’s own jewellery fitted – clicking away as I walk.

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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10 Responses to Hickman line insertion (maybe not for the squeamish)

  1. Megan Williams says:

    Ooo dare I say you’ve been very brave!!! Maybe the correct term would Stoical which, under the circumstances, is probably the most sensible approach.
    The worst part for me would have been all the waiting around (of which I’ve done my fair share) it’s so debilitating and frustrating AND demeaning. You are quite right with the Grrrr.
    I know you don’t really want too much overt sympathy but please allow me just one ‘poor love’. XXX

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  2. Thanks Megan. Just one ‘poor love’ is absolutely fine! x

    Like

  3. Denise says:

    My husband had the same reaction to having his hickman catheter installed. Even after months on chemo,
    it was that that made him feel like he was sick. They knocked him out to do his but if I recall, there were two
    lines installed, one into the neck vein and another into an artery that went towards his heart. I could be wrong
    but that’s what I heard explained by another patient. Due to delays of his transplant, he had his in for almost 8 weeks so he was REALLY relieved to see it go finally. Very sweet to hear folks hold your hand. Little things like that mean a lot when you’re going through these scary, new experiences.

    Like

  4. Joy Parsons says:

    I finally found the time to sit and read your blog. I’m very in tune with your ‘dancing in the rain’ philosophy – or as I used to say, “If life gives you a lemon, make lemonade”! You’re right about the bravery thing – you really don’t have any choice and, like you, I never saw the point of the ‘why me?’ approach. The fact is, it is you, and you have to deal with it as best you can. Friends, family and a glass of wine helped me along the way but post-treatment, I also became a fan of chlorella and turmeric.
    I hope that the Tai Chi lessons are powering up your battery a bit and wish you the very best with the treatment to come. You might be interested in looking at a website called ‘cancer active’ at some stage. It’s very uplifting and informative.
    Best wishes from Joy Parsons.
    Hope to see you back in class soon. xx

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    • Thanks for your support, Joy.

      Yes, I love the T’ai Chi classes, even when I can’t complete a whole class without sitting down. You make it a very welcoming and accepting space – thank you for that.

      I have also been taking chlorella and turmeric, although I stopped all supplements while I didn’t have to take any medication – just wanted a break from taking pills, but I will probably start taking them again after the transplant.

      I’ll be back in class next week. x

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  5. Hickman lines make life so much easier for transplant and all the meds pre and post. I had mine in for 4 months which meant 4 months without having to suffer needles – it was great. My lines were much longer and I had 3 lumens so much more things to stuff in my bra but it worked. Otherwise I had a string around my neck and two clamps to hold up the line so it wouldn’t put pressure on the exit line.

    Yes, it is a painful proceedure. You have to love the medical staff when they say it’ll be a simple procedure and relatively painless. Obviously, they’ve never had one installed now have they? When I first had it, it took a few days for the pain to stop, then a couple of weeks for me to stop feeling it altogether. The only bothersome thing is having to wrap the whole thing up to shower.

    Since I no longer need IV meds and fluids, after 4 months, I had mine taken out last week and took advantage of being able to have long showers without being wrapped in plastic and waterproof tape. 🙂

    Marie-Chantal

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    • Thanks again for the words of encouragement, Marie-Chantal.

      Fortunately, I’ve not had to wrap myself in plastic to shower. I just have a see-through dressing on most of the time, which I only need to change when necessary or once a week. Like you, I much prefer not to have to have any needles. I have difficult veins, so it’s always been a difficult process to get blood and insert canulas. I will probably have the line in until 2-4 weeks after the transplant – so removal around end of August – approx. 2.5 months in total.

      Thank you for reading my blog too. It’s good to have some allies going through something similar, as well as the people who love and care about us. As you say, no one can really appreciate what it’s like unless they’ve gone through it. Apart from the medical staff, I find most people seem to think it’s a lot worse than it is, which is just as hard to deal with some times.

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  6. Pingback: Rusty… | jet black living…

  7. Susan Metcalfe says:

    Hi just found your blog, very interesting. I had a Hickman Line fitted 3 days ago, I have Heamachromatosis and Docs find it difficult to venesect. The procedure I found wasn’t too bad, but i’m suffering now, I’m quite heavy chested and the line, although tucked down my bra, seems to drag and the pain when I move is quite bad. I suppose it will take time to settle, I’m probably a bit impatient. I’ve been told that I could have the line in situ for possibly a year, not looking forward to that but needs must.
    A bit annoyed with my Consultant as he’s been fannying around for over 5 years trying to decide how to proceed. I saw him last Monday, he thought that I had already had the procedure done??? and he apologised and said he would get me in that week. I asked if it could be postponed as I’d booked a family holiday to Orlando Florida and we go in 9 weeks. After all I’ve been waiting for over 5 years surely another 3 months wouldn’t make much difference. This holiday was booked 2 years ago as I thought that it would have it all sorted by the time we went. Well I had the procedure done last Wednesday, as it couldn’t wait, apparently!!!!
    I’m quite disappointed that I will not be able to join in some of the fun at the Water Parks which I was really looking forward to, as I don’t like the rides in the other parks, but hey ho will just have to make the best of it. I know it could be alot worse. Sorry to moan, especially when you’re going through so much yourself. Thanks for letting me get it of my chest (no pun intended) best of luck with your blog and for the future. XXX

    Like

    • Jet Black says:

      Hi Susan

      Yes, I also have large breasts, so I do know what you’re talking about the line pulling. Mine settled down – maybe taking a few days to stop puling. It also gets better once they take out the stitches. I’m really sorry your doctor didn’t agree to wait until after your holiday – sounds a bit insensitive to me. I think if it was me, I’d have pushed for it. Going on holiday with a line in is a real pain. No waterpark rides or swimming pools and maybe some embarrassment being in a bikini/swimsuit? You will need to arrange to have it flushed too, if you’re away for longer than a week.

      Good luck with it and the rest of your treatment.

      Like

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