Remember Peter the Picc line? That utter waste of time IV line that was supposed to be a fuss free way of getting chemo and other stuff into me without the need for canulars? The one that then never got used, got infected, gave me 6 unnecessary, painful visits to the hospital and then had to be removed? Utter knobber. Well, the alternative is a Port, or Portacath to give it it’s proper title. It’s an odd little device which is essentially a silicone or rubber (don’t know, don’t care) valve, which sits just under your skin, usually just under your collarbone, which has a sub-dermal catheter attached to it, which leads into a large artery, where it dumps the chemo into a large sturdy vein, better able to cope with all of its crap. The valve bit shows as a slight bump under your skin, and the chemo, or whatever, is injected directly into it with some special fancy-arse needle or other.
The fact that it is all under your skin means there is less risk of infection, there are no dangly bits of tubing hanging off you, you don’t have to go and get it re-dressed and flushed every week, and you can have a bath or shower whenever you want without having to wear a giant arm condom. Oh, and it can stay there as long as you need it. For years if you want. Sounds fab yes?As I’m a major fan of baths and a not-at-all fan of arm condoms, obviously I opted for the Port as my next IV fashion option. Who wouldn't, right?
Picc vs Port
I was wondering why on earth anyone bothered with Picc lines, when Ports seemed so much better, and it turns out they are a fair bit more complicated to install. A trained nurse can insert a Picc line, but a Port needs to be done by a radiology surgeon, with sedation and local anaesthetic, so is clearly a skilled procedure and also a lot more expensive, therefore. I’d imagine that when the money people at the NHS compare nurse’s hourly rates vs surgeon’s hourly rates, the Picc line comes out streets ahead. Despite the fact that the fuckers need cleaning out every week and are a complete pain in the arse a lot of the time. Ports aren’t perfect though, they can get blocked and cause problems, but they are a lot more sturdy and reliable than Piccs. And when you’ve got cancer and your life suddenly becomes a broken carriage on a runaway rollercoaster, sturdy and reliable are very attractive things.
So fabulous did the port seem that both Darcey and I decided we’d get one in the BOGOF deal of the century, where we actually Bought None Got Two Free On NHS, But BNGTFONHS is a really shit acronym.
Pinky & Perky
Darce already had her port date confirmed weeks ago, but for reasons we haven't yet uncovered, hers was scheduled for after she’d already had 3 rounds of chemo with a normal canular. Which seemed a bit bonkers, but clearly she has veins of steel and could manage 3 chemos without needing one. Anyway, as luck would have it, both of our ports were scheduled just a few days apart, albeit in different parts of the country. We decided to name them Pinky and Perky. I got Pinky because of my radiotherapy sunburn, and Darcey got Perky because she is.
I’m now going to attempt to tell both tales at once, in a Sliding Door alternate reality stylee, which I’ve never done before and have no idea how to do, so I’m just going to keep typing and see what comes out. Apologies if you get horribly confused. Team Pinky (me) is in dark pink (unoriginally obvious). Team Perky (Darcey) is in navy (because I like navy and it’s my blog so I get to choose).
Some time in April, Darcey was told she’d need a port, and was given a scrap of paper with the words“Port Procedure” and a date scribbled on it.
I discussed my port with my chemo nurses, as they were removing my Picc line. We talked about the procedure, the benefits and risks, and I was given a printed leaflet to take away and read. A couple of days later, I received an appointment letter through the post, and was told that I would receive a call from the Radiology team a few days before my procedure, and would need to have a blood test and a Covid test, which would all be arranged for me. I relaxed back into my regal chair of smugness and waited for Team Pinky to do their thing.
Meanwhile, it was a few days before the procedure, and Darcey was getting a bit panicky about the lack of info from Team Perky, and not even sure if she wanted a port, seeing as she had nailed 3 lots of chemo and her veins were holding up well. She gave her Cancer Nurse a call and was told to talk it through with the anaesthetist on the day. It wasn't the finest customer care. I offered support by spouting all the port info that I had, but much as she loves me, she kind of needed to hear it from a professional, rather than a mate with a dodgy internet connection, a Google fetish and an O level in Biology.
A few days before my procedure, I had a call from the Radiology nurses (I was sat in my car at the top of a hill, as BT still havent fixed my fucking phone line or intenet, just in case you were wondering). She talked me through the operation, checked I had been given an appointment for my blood test and Covid swab, which I had, and made sure I understood that I needed to fast from 6.am on the morning itself (I understood, but that doesnt mean I was happy about it). She told me to go to the chemo ward as I normally would, where they would collect me, do the procedure and take me back to chemo for obs and aftercare.
Darcey is completely in the dark, with no phone call, no info and no pre-procedure advice. We’re starting to think she might be having a whole different thing to me, although we’re pretty sure she isn’t. It feels a bit shit, to be honest. Luckily Darcey is made of very strong stuff indeed and decides to go along and talk through her concerns with the anaesthetist which, as it turns out, was a very wise thing to do.
It’s 5.45am on the day of my procedure and the food ban starts in 15 minutes. The ever-valiant and long-suffering Mr G climbs wearily out of bed to make tea and toast. No soldier, however badass and tough, should go into battle without a decent cup of tea inside them. And this will be toast without Marmite, because Marmite feels like a wholly unnecessary show of indulgence at what is clearly a very british stiff upper lip moment. I am lying in bed fanning myself. Not because I am a lazy slovenly diva who can't get up and make her own toast, even though I am, but today that isn’t the reason. It’s because of the infernal night sweats of being on hormone blockers which are now starting to creep into day sweats too. I tell ya, I’m a fucking delight to be around. Once I’ve fanned and misted myself and issued my daily curse to the universe, I reach for my rainbow tablet organiser (total best value buy ever) and take my morning drug cocktail, as I presume I have to get those bad boys downed by 6am too. Mr G doesn’t let me down and arrives back within 5 minutes with tea and toast, gets back unto bed and promptly falls back to sleep.
Darcey arrives at the hospital to meet the anaesthetist and to find out if she is actually having a port inserted today, and if she even wants it. So far no one has explained the clinical risks or benefits of having a port, what the procedure itself is like, and what the other options might be. At the meeting (a chat in a corridor) they work out that she’s actually been booked in for a completely different type of device, the wrong one entirely. Once they get that major fuck up our of the way the path is a bit clearer and they talk through the pros and cons, and the procedure itself. Darcey decides to go ahead with the operation but is already decided that she and Perky are not off to the best of starts, relationship-wise.
I swan into the Chemo ward like an old pro (steady!) and am met like a returning hero. My chemo ward is so lovely that everyone is met like a returning hero, but it’s still very nice that they greet me as the goddess I am. I’m taken to a side ward and told that today I get one of the beds, not the normal chemo chairs, and I’m honoured and a bit scared at the same time. It’s starting to dawn on me that this is a bit more major than I had thought it would be. Beds are for people who can't get up. I have bloods taken, and obs, and my blood pressure is sky high. It’s been high since I’ve been on the oral chemo tablets and my GP has given me tablets, but today my body is kicking off. First off I havent had a cup of tea since 5.50am and now it’s 10.30, so I fully understand my body’s deep chagrin at the unwelcome denial of its due nourishment. I’m hungry, thirsty and a wee bit scared. It seemed like quite a simple procedure when I read the leaflet. Now, with a hospital gown and sedation looming, I’m almost feeling nostalgic for Pete the Picc, simple and thick. But also bloody useless.
Darcey isn't given a gown to change into, but is told to remove her top, and is given a blanket to cover herself with. She waits. No bloods are taken, no obs done, there is no comfy bed and no friendly bedside manner. NHS staff are always kind and pleasant, but she’s really not being made to feel welcome, reassured or cared for. Eventually she is wheelchaired down to the operating theatre. Team Perky are a bit shit.
I’m chatting to the new male nurse about the weather - he’s new and has to be trained in lots of new things, so he’s doing my obs and bloods, as I’m the most interesting case on the ward today. We have to wait an hour or so for the blood results to come back so he’s keeping an eye on me and calming me down in the way that only nurses can. The glorious tea trolley lady arrives and starts handing out tea and sandwiches and when she gets to me she declares it a travesty that I’m not allowed to eat or drink. She gives me a sandwich and yoghurt for later and tells me she’ll put a few spares in the fridge for me. So not only do I #TakeTheSandwich, I have spare sandwiches for later. Team Pinky are excelling today.
A little while later and the bloods are back and we’re ready to roll. I get changed into a hospital gown that actually fucking fits for once, (god bless you Chemo ward) and I proudly display my pink fluffy bear socks that I brought with me. (I now carry fluffy socks with me to all medical procedures after my recent Socks of Shame episode). A large, strapping Porter called Alan arrives calling “cab for Hilary” and my bed brakes are taken off, I’m given good wishes by the nurses and I’m off, being wheeled along the corridors at high speed by a man who clearly loves his job, but would be equally well suited to a career in rally driving, or stock car racing. I’m having a whale of a time as surgeons, nurses and patients scatter to clear a path for us - doors are held back, children are grabbed by concerned parents and bags of clinical waste are rapidly whisked away by cleaning staff who clearly know Alan of old.
I consider giving a regal wave as we roar by, but I have a canula in one hand and to be honest, the other one is holding on to the bed for dear life. We skid to a halt at a secret part of Radiology that I haven't seen before, the operating rooms, and Alan wheels me in, puts my brakes back on, tells me there’s no charge for this one, and heads off to his next encounter.
The Operating Room
Darcey is introduced to her surgeon and his trainee, and is told that the trainee will be carrying out the procedure today, under the guidance of the senior doctor. She waits for the procedure to begin.
I am introduced to my surgeon, an army medic in camo fatigues, which is slightly off the wall, but I’m enjoying the edginess, and then, to the trainee registrar (henceforth Reggie), who will be carrying out my procedure, under the watchful eye of the army doc. I’m reassured that no one is going to mess with this guy, so the trainee had clearly better know his stuff, or shit will go down. Army Guy talks me through the procedure from a medical point of view. I’ll be sedated but conscious throughout, but if I’m in any discomfort at all I need to let them know. He says the last thing they want to do is to give me PTSD on top of the PTSD I’ll already be getting from all my other shedload of cancer treatment. Which I’m sure he meant to be reassuring, but is actually scary as fuck and has sent my anxiety demons into a collective howling banshee wail. I wasn’t planning on getting PTSD, and I thought I was coping pretty OK. Heck. And so much for the blood pressure thing.
Darcey waits quietly while the team prep the operating theatre. She listens to the sounds of the surgical implements and equipment being made ready and wonders why on earth she hasn’t walked out yet. This is terrifying. Eventually they call her in and she walks to the operating table, climbs up onto it and is given a sedative and local anaesthetic. She’s told it might make her feel a bit drunk, but she isn’t feeling anything other than scared and fed up.
The procedure involves two incisions, one where the port will sit, and another, at the base of the neck, where the catheter part of the device is inserted and then fed into an arterial vein, which should then make its way along the vein to its final resting place near the heart. The end of the catheter is then attached to the port, which will then become the point of entry for fluids.
Darcey is told to lie still and turn her head to the left so the team can access her neck, and also so she can’t see the messy stuff going on,
The registrar comes to chat with me and goes through the procedure again to make sure I know what’s going to happen to me. When he’s sure I’m ready and that I fully understand, we walk into the operating theatre and he helps me onto the table and gets me comfy. I realise that bizarrely, The Carpenters are playing in the background and the nurse and Army Guy are humming along to Close To You. Army Guy asks if I’d like any particular sort of music and I’m tempted to ask for Queen, but I can’t bring myself to spoil this easy listening ambiance. I mean who doesn’t love The Carpenters? I’m also pretty sure that I’d rather have Reggie cutting into me while being lulled along by ‘We’ve Only Just Begun’, rather than run the risk of him getting carried away by Freddie in full ‘Don’t Stop Me Now’ flood.
The Nurse puts up a kind of plastic tent over my head which is open on the left hand side, and positions my head to face outwards so I can keep chatting to her while the lads do the technical bits over on the right hand side. It’s a bit weird, but Army Guy pops his head into the tent to say hello and says we’re nearly ready, Reggie puts his hand on my shoulder in a reassuring way (although he may well be practising where he’s going to stick his scalpel). I’m sedated but not really aware of it, I just feel relaxed and I’m enjoying Karen, signing along in my head. My BP is still up but stable, so they crack on.
Darcey’s trainee surgeon makes the first incision in her neck and starts to insert the tube. Unfortunately it’s not in the right place, so he has to make a second incision and try again. He triescto locate the port end above her collarbone, but it’s not working. In the end he has to relocate it lower down, making a further incision. Once it’s down they have to check that the internal end is positioned correctly in the vein and has travelled towards the heart as it should.
On checking the X-ray it seems that Darcey’s line has taken a wrong turn and is now somewhere near her armpit. The worse news is that this means the whole thing will have to be re-done. So she’s back on the operating table, having yet another incision made in her neck and another one next to the original post site on her chest. The senior surgeon tells her this is very rare, but it does happen sometimes. It’s unfortunate, but they can fix it. The hour-long procedure she was expecting has now been 4 hours long.
I’m laying in blissful ignorance, aware of yer man standing close to me and feeling an odd pulling sensation on my chest, just under my collar bone. It’s not painful, but I’m guessing it’s going to be a bit sore later. Karen’s On Top Of The World and whilst I’m not quite there with her, I’m doing OK. Nurse is checking on me every couple of minutes, Reggie is beavering away, and Army Guy is having a karaoke session straight out of 1978.
After a while they’re making finishing-up noises and Reggie is cleaning up and applying dressings. He apologises for getting a bit of blood in my hair, and I’m surprised to realise that blood has been involved. I haven’t spotted a single bit of blood or gore and I have to admit that the head tent definitely did its job - niche though that job might be.
Reggie is done, so Nurse helps me up and we walk back over to my waiting hospital bed. She makes me comfortable and Army Guy comes to tell me it all went really well. Apparently they put a ‘gripper needle’ in which keeps the port in place and stops it from flipping over whilst the wound is healing. He says they use the gripper needle where there is the potential for skin to move around when a person moves from lying to sitting positions. I realise that this is him attempting tact, and what he is really saying is, “you have a lot of flesh ma’am, so we needed to nailgun the sucker into place.” I’m not sure why I have given him a mid-west american drawl, when he’s clearly from somewhere north of Glasgow, but this is my story and I’ll cast it however I see fit. The clip will come out in a week’s time and then Pinky is good to go, just in time for my first chemo, a few days later.
Darcey’s procedure is done. She is helped off the operating table and from there she walks out, alone, back to her car and home. She has steri strips and a dressing holding her together, but no aftercare instructions, no post-op observations, and a sense that this really isn't how it should be. She makes a painful way home and prepares herself for chemotherapy the next day. Darcey wonders if a surgical procedure the day before chemo was really a good idea, but you have to trust that the professional know their stuff, don’t you?
Nurse tries to arrange a porter to take me back to the chemo ward, but as she picks up the phone we hear the unmistakable sound of the air ambulance. “Damn”, she says, “we’ll never get a porter now”. I ask her if that’s because the porters all have to attend the incoming incident and she replies “God no, they all just run out there and stand on the grass, gazing at the helicopter.” I can totally visualise Alan doing exactly that, drooling over the air ambulance and wishing he could have a go.
Nurse calls the chemo ward and within a couple of minutes my male student nurse and one of the Ward Sisters have arrived to wheel me back. The journey back is slower, and less exciting, but seeing as I have two holes in my upper self, I’m quite relieved to travel at a more sedate pace for once.
Back at the word they start doing observations every 15 minutes, and I am given two cups of tea, a sandwich, a spare sandwich, a yoghurt, 2 cakes and a fruit pot that were put aside for me earlier. Even I can’t eat that lot, but I am so totally in love with the Tea Trolley Lady that I may have to send her flowers. After an hour and a bit I’m declared fit to go home, and they book me in to have the gripper needle removed the following week. The Sister explains how I should look after myself, what pain relief I can take if I need to, and how to get comfy for a good night’s sleep. They make sure I’m being collected by Mr G, and once they know he’s outside, they let me go, with a couple of spare dressings and a bag full of spare snacks.
The next day Darcey heads to the ward for her next round of chemo. She has three angry looking wounds in her neck and two in her port area. She has had a terrible night’s sleep.
As she arrives at the chemo ward the nurses let her know they’ve heard what happened to her yesterday and how terrible it must be. They check she’s ok, and take the best care of her. This is as it should be. As it almost always is.
I have a reasonable night’s sleep and while the neck wound is sore the main port one really isn’t hurting at all. I’m quite pleased with Pinky, and maybe this is one medical procedure that won’t fuck itself up. I cross my fingers and give Pinky a tentative thumbs up.
Darcey and I are in constant contact, and we are both checking up on the progress of both Pinky and Perky. We’re a team, they’re a team, but now yet another chemo has gone by and Perky isn’t ready for action, so poor old Darce really isn’t feeling the love. When I say ‘not feeling the love;'I’m probably not giving you the full impact. I’ll let Darcy tell you exactly how she feels about Perky:
“Perky is a fucking unwanted squatter. Perky would be the food you order which makes you barf and shit your pants. Perky is a fuckfinger and a slut. Fucking twatting knobfestering Perky”
I think she makes a valid point.
Pinky is doing fine, by the way.