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.