[CANCER] Port/TIVAD Removal #CancerLife

When we first talked about the ‘Portacath’ (Port/TIVAD), there was a suggestion that it could be left in for a long time, “just” with a requirement to have it flushed with saline every 4-6 weeks. The oncologist, however, when I asked about this, said “no, your treatment has finished, and you don’t need it any more”, which is very encouraging! So Monday night I took a last shot of the port still in my chest… I’ve got quite used to it, and I’m certainly happy at how it means that the veins in my arms, which don’t want to give blood, have not been prodded around (aside from the one week where it didn’t want to work!).

Blood Test

So yesterday, I’d been instructed to go for a bloodtest at 11am, to ensure that it was sent of by 12noon. Despite my taxi being late (with local anaesthetic happening, didn’t seem worth risking the drive), I just about made it, and then as often happens with hospital appointments, went in around 11.58am:

Off to Maggies

Once the blood test was submitted, I popped around the corner to Maggie’s, dropped off a few hats that I’d not worn, or unlikely to wear, chatted to some of the staff, got a bit of a nibble and a drink, and met a friend who was heading to Look Good, Feel Better.

Actually I’m in Maggie’s … #relax #cancerlife

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Port Removal

I then headed up to the IPU, where on 1st December I’d had the port inserted (in about an hour, local anaesthetic only, and surviving a potential fire alarm and my tough skin which bent the first port apparently!), and signed myself in.

And now waiting for the op … #cancerlife

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There was a bit of confusion as one person came for me to take bloods, went off to double-check that I’d had them done, whether they’d come back, whilst someone else rang me to say they were looking for me, my bloods were fine, and we could get on with the op, leaving the other nurse looking for me when I disappeared. It’s good to find humour in amongst everything! Me looking a bit confused in the second bloods room:

Anyway, into the small procedure room, where Sam the specialist procedure nurse, introduced himself and what was going to happen – that it would only be 15 minutes and very simple. He then popped out the room whilst I stripped the top half off, and got under the sheet.

Operating table was raised, the blue sheet was placed, in went the local anaesthetic, and the first cut was made… I felt that – Sam said, we don’t do unnecessary pain here, and gave me another needle of anaesthetic (2% lidocaine according to the whiteboard!).

He took the port back out through the hole that was made to put it in, but this time there was no need to make a cut near the neck artery, and aside from having to press onto my neck, didn’t feel anything as that came out. Everything was then stitched up, they said leave it under the waterproof dressing for 7 days, when the stitches will dissolve.

Ready to go

Checking I was OK, Sam popped outside the room, whilst I replaced my clothes again, was instructed to lie still for 10 mins … double check that nothing was bleeding and wasn’t feeling dizzy, then was OK to go!

Ta da … 15 min procedure. Now 12 min wait for cab! #cancerlife

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Taxi home, and flopped out on the sofa with laptop for the rest of the afternoon! Pretty painless, although I needed some codeine last night! Very pleased, by the way, that the blood clots from my nose have stopped, even if the indigestion and the fatigue hasn’t…


[CANCER] Further Surgery #BreastCancer

This afternoon I signed yet another consent form, though I was pleased that ‘death’ wasn’t listed as one of the side effects this time… just possible allergic reaction, etc. etc. – oh and likely slow healing of the wound due to chemotherapy.

Surgery During Chemotherapy?

Cancer teams are not keen on any form of surgery during chemotherapy, and I’m nearly 2 weeks past my last chemotherapy treatment (which means that next week I’m officially halfway through the chemotherapy phase of the treatment), because of the infection risk. During my first chemotherapy, whilst undertaking scar massage, I felt another lump on top of the mastectomy site. I left a message with the BCNs (Breast Care Nurses), and they had me in the next day. Another physical exam in which they swiftly said that it was likely one of three things, none of which were cancer, followed by an ultrasound which confirmed that it was most likely a ‘lipoma‘ (fatty lump). Told to come back after the next chemo round if still there to have it double-checked, at which point they decided to take it out and biopsied to be sure, but we had to find the right timing around chemotherapy (on the first cancer drug the first two weeks are where I’m most at risk of infection, including neutropenic sepsis, so cutting the skin introduces a higher infection risk). As my next chemo is 2nd February, and my surgeon does all his surgery on a Thursday, my oncologist Dr C agreed that it could be done today, subject to white blood cell counts yesterday.

Hospital, Hospital, Hospital

This week I’ve been in the hospital every day – Monday was a refit for the prosthesis (I’ll blog on the joys of finding a fake boob that fits at some point – as we joked, it’s like the Wand Shop in Harry Potter – the boob chooses you!), Tuesday was an MRI scan to check something that showed up on my spine – in the CT scan I’d had the week before to check something on my lungs – the lungs are thankfully clear, the MRI we’re still waiting on results. #Scanxiety is a real thing I can tell you… and I suspect this is not the end of all these scares… Yesterday I had to go in to have bloods taken (via my portacath, which only some people know how to use), and then today I was back in the waiting room – Ward D5 this time, waiting to have the lump removed for an ‘excision biopsy’, accompanied by some stress after a phone call last night indicated the MRI test results might be back … they are not!

Waiting … and Waiting

And waiting room is the right word… Thankfully accompanied by my good friend Andrew (was told not to drive home from this operation too, so also provider of lifts as well as company). We arrived just before 12, handed in the registration form, then sit and listen out for ‘Rebecca Lewis’ (oh yes, one can only train the regulars to call me Bex, and my surgeon has never learnt that. I’ll forgive him, as he’s lovely, whilst also being pretty clear about what’s going on, and done excellent work on me!). After about an hour, get called into see the nurse, blood pressure, temperature, more paperwork (name, dob, address parroted out once more, and the addition of various wristbands (like going to a festival, but less fun!):

The anaesthetist also popped in to explain the sounds and sights I’d see, as this surgery is quick, done under local anaesthetic, so I’ll get to see the theatre I had my main operation in (which clearly I slept through!), so that I wouldn’t be freaked out, and then they said take another seat for another 30-45 minutes when ‘Mr D‘ (my surgeon) would come up with the consenting paperwork. All this time I’m wondering if I’m getting my scan results! Mr D arrives, impresses Andrew with the fact that he knows who I am, shakes my hand, asks how I am, does the same to the woman next to me (who I then get talking to, of course!), then goes to get my paperwork. Tells me straight away that there was some confusion leading to the phone call, no scan results are back, but hopefully they’ll be back on Monday in time for the MDT meeting, so next week! He then makes sure I know what’s going to happen, identifies the potential risks, I sign (including my date of birth instead of today’s date, but you know…), take a seat again…


Then taken to a room by one of the nurses, who then comes in with a basket for my clothes, get to put the LOVELY gown on, lock valuables away, etc. and I’ve not long to wait – although time for a conversation with the three other ladies in that waiting room – all waiting for leg surgery! Then it’s time for ‘determined face’ on, accompany a nurse down the lift into the waiting area for the operating theatres (same bed as last time – apparently relates to the theatre) – and note how much hair the cold cap is causing me to keep (though I can’t wash it often, or style it at all aside from one brushing a day so..)

After double checking all the information on most of the forms, and name/dob/address again, head into the theatre. I’m quite excited to see what this looks like to be honest, as Holby City/Casualty is my only reference point otherwise! Those big theatre lights are up, there’s lots of people in there, the tray is being loaded up, and I’m asked to get up onto the bed (which has a weird jelly sensation). It’s pretty cold, so soon covered in a blanket, lots of lovely people checking I’m OK, staff double-checking bits of paperwork, etc. Sam (medical student) pops up with an arm extension to the table, and there is a layer of jelly for my arm to rest on + various absorbent papers for whatever gunk is about to go on me.

The Operation

Then we’re ready to go, Mr D explains what he’s doing as he iodines the area, places the blue sheet over the area (they nearly forgot to take it back off my face – nice to have a laugh mid surgery, right), local anaesthetic goes in, checks I can’t feel anything.I reckon what follows was about 10-15 mins of various tugging sensations, fizzing of cauterised skin, etc plus bits of conversation over and to me, before Mr D asks, “I don’t suppose you want to see it”. I’m curious so, yes please, and something that looks rather like a very large baked bean is held up (I reckon just over 1cm circumference, less than 2cm long)… and then I’m being stitched up. Then it’s back off the table, check I’m not dizzy, but taken up in a wheelchair anyway. Get to chat to the woman who was next to me in the waiting room as she’s in next.


Then head back up to the ward, where BP/temperature checked, check that the dressing is good, loaded up with water, and given painkillers for later, plus spare dressings for the week, plus an appointment to come back in a week to check healing, etc. Get chatting again to the women in this room, where they’re still waiting, before being told can get changed and head home:

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So now it’s all about waiting for the MRI, and getting ready for Paclitaxel next week (new drug, new side effects). I’ve not taken any painkillers yet, though I will as I head to bed, just enjoyed the support from people via social media, etc. and chatted to a friend on FaceTime. Once I got past the dizzy/nausea stage of the first week of chemo, mostly been left with tinnitus and indigestion – along with fatigue. I tell you, this cancer, it’s right glamorous! A friend sent a message this morning about surviving endurance training … and that is pretty much it – it’s lots of little things, appointments, scares, side effects, which add up to a whole heap of stuff but on their own they sound stupid! I’ve gone back to work (aka study leave at home working on research, I’ve got plenty that I want to do) after each chemo, but not this one, when I’ve enjoyed planning out what needs to be done to my house (it’s a good distraction!), especially a new kitchen (yeah, I’m not very good at the software, I’ll let the experts take the measurements/starting ideas and create proper plans)!

Other Cancer Thoughts/Useful Info

I like this post from Maggies about ‘how to talk about cancer‘, and here’s some things from Lush that might be useful to give friends who are undergoing chemo (for hair, face, spots, dry skin, etc.) … with a longer list via @tickingoffbreastcancer: HOW TO HELP SOMEONE GOING THROUGH BREAST CANCER TREATMENT – you might recognise some that I’ve had, as we have chatted via YBCN (please direct any woman under 45 who’s been diagnosed to the associated excellent Facebook group, whilst I also find the people in here lovely too).

Oh, and you know I feared ‘chemo brain‘, here’s what it is:

  • Difficulty remembering facts (e.g., people’s names, important dates)
  • Trouble finding the right words or finishing sentences
  • Struggling to concentrate or learn new skills
  • Getting confused easily
  • Finding it hard to multitask

[CANCER] A few things I wish I’d known before my surgery/mastectomy #BreastCancer #BreastCancerRealities

It was only just over a month ago that I was diagnosed with breast cancer – I had a pretty good idea it was likely the week before, but it took til 30th August for tests to confirm the diagnosis. It’s all happened pretty fast – one minute I was trying to finish an academic article for submission, starting to think about teaching prep, and stocking up meals ready for the start of term – the next – life is full of a whole load of new terminology, visits to the hospital, and next thing I know, I’m recovering post-surgery from my mastectomy (and lymph node clearance). I’m currently waiting for the pathology results to come back (next week), after which meetings with the oncologist will start, and the dreaded chemo will kick off (the only thing I was worried about with surgery was in dying on the table, whereas for chemo I am particularly fearful of anything that interferes with my brain capacity, causes nausea/vomiting, hurts, and messes up your digestive system… it’s going to be a FUN few months). So, yeah, I’m pretty chipper at the moment as I’m feeling better every day, and so far as I can see, am back at work today, albeit working at home!

Breast cancer awareness campaign in New Zealand

I would like to have known what I was in for, so I’m sharing my experience here – might be helpful for others about to go in for surgery (so might include a bit of extra detail that might seem a bit TMI).


Pre-op tests the week before included bloods, ECG, chest x-ray, lots of chats about family history, current medication, past hospitalisation, etc.

I was convinced that I could work up until the last minute, and was working frantically on my journal article weekend before, and into the week. My surgery was on Thursday, by Tuesday afternoon the reality was hitting in, and waterworks hit. I did take a sleeping tablet that night and slept really well, which I hope set me up well for the operation day. Wednesday was a bit of a write-off, as I checked my will was OK, and that I had given my passwords to someone! It doesn’t matter that the doctors and the anaesthetist say ‘we do this all day, every day’, maybe I watch too much Casualty/Holby, but I should think everyone thinks, am I the one this is going to go wrong for?

One thing I was really pleased we’d managed to arrange, was for my mum to come and stay with me – she drove halfway across the country, with a slightly open-ended return date to look after me post-surgery. She arrived Wednesday evening, and we went out for a nice meal (no alcohol for me, but very nice Mocktails) at A Tavola, then early to bed before needing to get up REALLY early the next morning. My mum wasn’t able to stay, and was told to ring the ward after 1pm for a status update, but not to be surprised if the surgery went on longer than the anticipated 3.5-4 hours – she was also charged with posting updates to my Facebook page so friends could see – big cheer from one group at work when the notification I was out came up.

Straight on with the hospital gown, lie down and read a bit – something easy like Harry Potter, interspersed with various people coming to test blood pressure, ask questions, explain what would be happening (explaining the process helps calm my nerves anyway!), say where I was on the list, that the list had changed, etc. There was a socket next to the bed, so I was able to keep my phone charged (with a longer cable and stand), and that was locked away (along with my pre-existing meds) once I went down to theatre for surgery – and yeah, don’t stub your toe/lift your toenail just before you walk down… and it seemed worth wearing these pants! Patients are encouraged to walk to the theatre (so a dressing gown/flip-flops comes in handy here), where there were a few more more questions, a few more tears, and asked to get onto the trolley ready for the anaesthetist to work – after about 10 minutes, he joked “did you not get the memo to bring your veins” (and yes, I’d drunk water and whatever else it was they ask you to try) … eventually he found a small vein, said that would be enough to put me out, after which he would find a bigger vein.


Next thing I know, I’m blearily coming to, to a gentle hello from one of the medical team next to my bed – with a cannula plugged into my foot (clearly where they found a good vein). They check a few things, say hello, attempt to push me down the corridor (nope, gonna be sick), brought back, more meds. Next attempt = much better. Flop across onto my ward bed, they tell me things took longer than expected, but that’s not a problem, and they think they got everything they wanted to. My mum comes and sorts things out next to my bed – I’ve missed dinner but I don’t care! Rest of the night is a blur of blood pressure checks, drifting off, being sick, not caring that hospital gown was not done up at the back as wobble to the toilet. Based on advice from those in the YBCN group and couple of reputable websites I had brought a bottle with a straw, some cereal bars/snacks, eye-mask, ear-plugs, socks to keep warm – though I didn’t use any of those (only 4 of us on the ward, and they had straws/biscuits on ward)! I had extra books in case I got stuck in for more than one night, but couldn’t concentrate long enough to read more than a couple of pages – mostly rather blotto or reading my phone messages! Definitely useful however were wet wipes, toothbrush and lipsalve.

And don’t forget your comfort companion (present from my niece):

Awaiting its naming ceremony … from my niece! Xx

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Preparing to go home was based upon being able to walk (shuffle) around, not being sick, able to go to toilet alone, blood pressure and bloods all being OK, so I got to leave at 8pm. They encourage you to get dressed earlier – useful for this was a button-up shirt, pull up trakkies, and flip-flops (nothing to do up/bend down for). The nurses tried out the post-surgery bra and give me some stuffing for it, along with a drain bag to fit the three drains and the PICO that my surgeon had placed. Earliest those were going to come  out was Tuesday… Best extra tip, take a pillow/cushion to put under the seatbelt in the car. I couldn’t open the car door, was a bit of a wiggle to get in, and then couldn’t pull the seat-belt over by myself!

At Home

My mum agreed to stay until the drains came out – which ended up being Friday, not Tuesday (and that didn’t hurt – just a twinge as each came out as I’d taken codeine an hour beforehand!). We ended up back in the hospital Saturday morning as the PICO kept beeping (more dressings put on) – and for anti-nausea meds, and again Monday as I thought I had a lump of fluid – nope – that’s just fat that had been held up by the tissue we’ve removed (more dressings) – and no need to come in Tuesday. Side note, after anaesthetic and codeine, you might want to keep some prunes in the house.

For sleeping I can highly recommend a V-Shaped Pillow, surrounded by other pillows, and some Lush Sleepy. You’ll basically be sleeping upright, and you need another pillow to hook your arm over – as you try not to roll over on the drains. I spent most of the weekend dozing in and out, although we went out to the local park for about 10 minutes of sitting on the bench #freshair! After Monday, the nurse said sleeping was more important than the PICO, and to take the batteries out – worked out how to do that Weds night, then put them back in during the day. By Wednesday I was only really needing the codeine/paracetamol at night, and had stopped napping… by that point I was also ready to concentrate so books and Netflix came back into play. It was also about that time it seemed worth trying out the front-fastening bra which is all that could be done at this point!

Sat at home banked up by cushions, with the remote control within easy reach, phone charging to one side (lots of social media chat to sustain me). Tucked in with the crochet blanket a friend had made me, and with my arm looped over the cushion my cousins had given me. I let my mum arrange any flowers, bring me post, put all my cards on the wall (I’m leaving them up til treatment finishes!), bring me lots of water, and prepare quality food in smallish quantities – lots of protein and vitamins as emphasised by the BCN (Breast Cancer Nurse), help me with bits of dressing. Whenever we went out – which we did for short distances every day (5000 steps by the time she left Sunday week afterwards – including National Trust), I wore a poncho so I didn’t have to get my sleeves inside anything, though I still needed help getting it on/off my head. I stuck to shoes that were slip on/off for the first 10 days so I didn’t have to bend down, and did all my physio religiously! Gradually developing range to open/close car doors, get water from the tap, although can’t grip the bread to cut that (pre-cut = solution, yeah!) yet, and moved everything within easy reach. Got a housekeeper’s carry tray so could move around with least number of trips using my good arm, also a sponge for showering (dressings can be splashed, not soaked), lots of moisturiser for the surgical arm to help prevent lymphedema, and help with hairwashing from an early stage!

I’ve got other things scattered around, although some are not needed til chemo, massage cushion, and very much enjoying my ‘Octobervent’ calendar, put together by my 5 year old niece and her mum – something to look forward to everyday.

Now my mum has gone, I’ve made sure I’ve got the neighbour’s numbers, keeping in contact with other people on social media (publicly and otherwise), and just trying to make sure there’s something to look forward to each day, especially as I need to wait 3-4 weeks tilI I can drive again. I’m expected to keeping going into the clinic around twice a week to check on wound healing, have the wound drained as necessary, etc. Keeping my mind occupied with work is good for now – I’m not convinced that I’ll have enough brain capacity during chemo, but at this stage, am Keeping Calm and Carrying On with the work that I enjoy doing … and trying to wrestle this academic article on ‘Social Media, Peer Surveillance and Spiritual Formation’ intro shape .. and trying not to overanalyse it til the idea has gone!

*If I remember something else, reserve the right to edit the text/make a note in the comments…. or if you’ve gone through it, what do you wish someone had told you beforehand?

Photo from Unsplash, and in text.