35. The afterparty

Warning: perhaps not the boob shots you’d typically want to see, but in the interest of honesty and completeness of the blog, I’ve decided to include photos of the boob. I have debated this for a while, but the whole idea of the blog is to help people understand what this is really like, and if I leave out the photos, I’m not giving the full picture. So I’ve decided to include them.

Early progress

In the first week after surgery, I made good progress in healing, and I took photos every day of the wounds so I could see and compare how they were healing.

There are two wounds: one on my boob (where they removed the tumour) and another in my axilla / armpit (where they removed the lymph nodes). They warned me in advance that the boob would heal better/faster than the axilla, because the latter is a trickier area to get at. They were right, and the axilla was a bit more sore, but they did a good job in surgery and neither is too gory, just lots of colours from bruising etc. But if you’re squeamish, scroll quickly as photos follow!

Unfortunately, since the elation of Wednesday’s “all clear” news, things haven’t quite gone as smoothly as I was hoping. By 2am on Thursday morning I was in A&E, and I now feel like a new mum battling with nappies and sleepless nights! So what on earth has happened in week two?

My first ride in an ambulance – slightly embarrassing

I’ve also debated whether to include this, as it is somewhat embarrassing! But given that it’s a side effect of chemo, I feel I should, for honesty’s sake.

So at about 8pm on Wednesday evening, I went to the loo. Or rather, I didn’t. Or rather, I couldn’t.

Note: during chemo, they warned me that a possible side effect was constipation, and I was prescribed Magnesium to help me ‘go’. Luckily, I didn’t have this side effect, so when I finished treatment I gave back the unused magnesium, along with my other unused meds. (Very conscious of the cost of all this, I wanted to save the health service whatever I could by returning unopened meds to the hospital. They were very grateful!) 

Unfortunately, this left me with nothing to ease the pain and it just got worse and more painful. By 2am, there was no pharmacy open and I’d already tried to sleep through it, without joy. So I called 112 (the dutch equivalent of 999), expecting them to send me a paramedic with some meds on a bicycle. But no, they sent an ambulance and wanted to bring me into A&E (as a precaution, I guess, because I’d had surgery the week before). Despite being in awful pain, I apparently asked the paramedics if they shouldn’t be helping people in accidents of something? And suggested if they could just give me a bowl of All Bran or some prunes, I’m sure I’d be fine?! But no, they insisted on taking me in. So I had my first ride in an ambulance, bent double on my side, strapped to a bed, all because I couldn’t poo. So embarrassing!

The floodgates

I won’t go into more detail on that, needless to say they sorted me out. Meanwhile, while lying on a bed in A&E, I suddenly noticed that the wound under my arm has started to weep, by the gallon. Erm, Nurse? That’s not supposed to happen, is it?

On Wednesday, I’d pointed out to my surgeon that there was a huge ‘bag’ of fluid under my skin in the wound, which was bounding around and tugging on the wound, uncomfortably. She’s said that was normal, and that it’d go in time. I thought she’d meant it would drain internally, but apparently not. Sometimes it drains out of the wound.

So they found me a surgeon to take a look, and he was happy it hadn’t become infected as the fluid was clear. So he had a good prod around it to try and get as much fluid out as possible, before slapping on a large plaster and sending me home.

Despite my mentioning it at least twice (I have a rubbish pain threshold) he chose to ignore the fact that my skin was red from the previous plaster which had been on the wound, or the fact that I’d had five months of chemo and therefore had super sensitive skin. He just slapped that plaster on and said “just use Zinc Salve for any soreness, like you do on a baby’s bottom, you’ll be fine“.

By Thursday morning, the plaster was ready to change, so I went back to hospital for my morning appointment with the nurse, and she removed the plaster, painfully again taking half my skin with it – OH MY GOD! But still the wound didn’t stop weeping. So after cleaning it up and again, having a good prod to empty the bag of fluid as much as she could, she redressed it, this time with an absorbent pad and silk tape, giving me a good supply to take home, and instructions to redress it 3 times a day.

Unfortunately, when I later removed the silk tape to redress the wound at home, it was no better than the plaster and another patch of skin came off with it. ARGHHHH!

It’s like changing a nappy, baby every few hours!

So since then, I’ve been improvising! How do you hold on a 10cm-wide absorbent pad under your armpit without using tape or plasters, while avoiding the areas where you’d typically attach tape (as these are now blistered and covered in thick, gloopy nappy rash cream) and without aggravating the wound on the boob?! I’ve tried bandages over my opposite shoulder, scarves around my chest, bikini tops, and even cut the arms and waist off my hockey base layer (as it’s tight enough to hold things in place, but too hot to wear in it’s full form). All creative ideas welcome! By this point, I’m trying all sorts!

I’m not scheduled to see the nurse again until Tuesday, so tomorrow I plan to be at hospital for 08:30 to see what they think – surely it should’ve stopped weeping by then?!


33. Phase 2 – surgery

So, how did it go? Well, yet again I feel much better than I thought I would! I’m not really sure what I was expecting, but I certainly don’t feel like I’ve just had an operation!

Is it just me? Or is the way I feel reflective of why I’m writing this blog in the first place? People’s perceptions of cancer, what it’s like to have cancer, and what it’s like to have treatment for cancer – are they all over-rated, or am I just super lucky in how my body is responding to all this?

Who knows, but here’s how phase two is playing out for me so far…

 The boob job

To start with, things were delayed, so instead of going in on Tuesday for my pre-op, I had everything done on Wednesday. When they told me this, I was initially disappointed; if I had to do the pre-op on Wednesday morning, my surgery would be pushed later, reducing my chances of being able to come home the same day. But in fact, it made things better, as I didn’t have time to stop and think about what was happening.

I went in on Wednesday at 9am, and the first thing to happen was a scan. The downside of doing things in another language, is that sometimes things get a little ‘lost in translation’. So there I am explaining to Kari what happens in an MRI, when a nurse comes and shuffles me into the Ultrasound room… erm ok, I don’t mind that – it’s far less invasive and there’s no cannulas – yay! As the image comes up on screen, Nursey is happy that she can see the tumour, and is ready to inject it with dye (so the surgeon can clearly see it when she opens me up). Now I’m not sure how I thought they’d inject the dye other than by using a needle. But when she pulled out this three-inch long needle, I suddenly realized where that thing was going! I may have survived five months of chemotherapy, but my pain threshold is useless – I squeal when plucking my eyebrows! So when I ask if I’ll have any anaesthetic for that thing, and she replies “no”, things start to get real! But nursey explains that the needle is super thin, and I’ll only feel a little prick as it touches my skin. Luckily she was right. There was a funny kind of numbness inside my boob when the dye went in, but all I really felt was a tiny prick, that’s all – happy days!

So while the dye is doing it’s thing, it’s time for more scans… Next, I go into a huge room with an MRI-like machine, where I lie on a conveyor belt and slide into a big round machine. Two scans, one on my back and one on my side. Five minutes for each, no cannulas. The nurse tells me that they need to do this twice, just in case the first scans don’t show the dye properly. So after the first round, I’m taken up to the ward and introduced to my bed.

I change into my delightful blue gown and ‘normal stretch’ pants – hot! – and the ward nurse appears with a pipe. Right. What? I know I’m having treatment in the Netherlands, but a pipe? And it’s smoking? Yes, they actually want me to smoke this thing! We have a few giggles about how to say “puff” in English and there I am, sitting in a hospital ward, wearing a blue gown, puffing away on a bong?! (Apparently, the pipe is a nebulizer to clean my lungs, but I preferred to think of it as a bong.)

Before long, it’s time to go back downstairs for my second round of scans. This time I’m going down on a bed, so I can go straight into surgery afterwards. OK now this is starting to get serious.

I’m wheeled back down to radiology for the second round of scans, this time with nurse Kari in tow, and we’re trying to figure out how to attach a number 44 to my bed (a la Lewis Hamilton). Every time I’m wheeled anywhere, we describe it as “Practice 1 / 2 / 3” until finally I’m wheeled down to the recovery room – that was “Qually” – to get me ready for surgery, at which point Nurse Kari leaves me.

I’m wheeled into theatre, where I meet David, my friendly anaesthetist. “He’s one of you” I’m told by the surgical staff, “he’s English”. Enter David – a six-foot delicious looking Bristolian, who sounds like Prince Harry. From that point, all I remember is him telling me to think of something nice “like Lewis winning the Grand Prix on Sunday?” I reply. “It does help” he replies “you look like you’ve been on holiday recently, judging by the tan lines?” I blush and acknowledge that the tan lines on my boobs are indeed wonky, thanks to having one boob bigger than the other at the moment. But I’m hoping this is going to put that straight, right? “Of course” he replies “where did you go, anywhere nice?”Barbados” I reply, and with that I’m out for the count…

Apparently, I was super cold during surgery and they couldn’t get me warm again, so I wake up in the recovery room with a heater over me… Dr Donkervoort, my surgeon, appears and speaks to me… I’m not really awake yet but I think she said she was happy with how it went? Not really sure, I’m still… zzzzzzzzzzzzz I spend the next hour or so dozing and gradually coming round. 

Meanwhile, upstairs in the ward, Nurse Kari has been pacing the floor wandering what’s happening – the op was only meant to take an hour, I went down to theatre at 1:30, it’s now 5:30, what’s going on? Eventually, she gets a call to say I’m awake and have been out of surgery for ages (they did try calling earlier, but for some reason didn’t get through to her – she was probably off chatting up some hot anaesthetist somewhere… hang on…?)

I open my eyes at about 6:30 to see Nurse Kari waving through the window like a nutcase 🙂 She comes into the recovery room and they wheel us back up to the ward (the parade lap, obviously). Still a bit blurry and not entirely sure what’s going on, all I can feel is an itchy annoying tube going up my nose spraying cold air into my airway. I have a drip connected to a cannula on my arm, which has to remain in place until I can prove I can pee.

First things first – cup of tea? Yes please!

Next – I need to FaceTime mum (apparently, everyone was getting worried when I didn’t come back from theatre, so this call meant more to them than anything).

And finally, food – I’m given the biggest plate of dinner, which I know I can’t eat, but as long as I eat something, they’re happy. So I polish off a beetroot salad and a few mouthfuls of fish. About an hour later I need the loo… “Oh by the way, your pee will be magic for a few days” What? Apparently, the dye they injected is considered a toxin (obviously) which the body needs to get rid of. So I need to drink lots of water to flush out the blue dye – once my pee goes back to normal, the dye is all out and I’m ‘clean’ again. So I go to the loo and, just as predicted, my pee looks the colour of antifreeze!

At this point, the team are happy that I can eat and pee, so I’m allowed to go home.

I’m now home and, over the next few days, I’m sure things will change, so I’ll post again as the wounds evolve!


32. Phase 2 – here we go…

As I haven’t posted an update for the past six weeks, I’m a bit stuck on how to start this… In some ways, there’s nothing to tell (my last post was celebrating the end of chemo, and since then I’ve had no treatment). But in other ways, heaps has happened (my immune system recovered, meaning I could finally get on a plane – woo hoo! – and my itinerary in the past six weeks has been pretty packed!) So I’ll try and do a quick recap, then explain what happens next… (this could be good, everyone knows I can’t do a ‘quick recap’!)

The end of chemo

Although I finished chemo on 27th March, the drugs still had to do their work inside me, so for the first couple of weeks it was the usual cycle – a few days feeling fine, then a few days feeling crap, before my body started to recover and I picked up again. By mid-April, my blood levels were on the up and my immune system was well enough for me to travel.

This was a big deal for me… Before finding out I had cancer, I used to travel all the time – I’d fly off to see friends at the weekends, went to at least five F1 races each year, and often just got on a plane at a moment’s notice! I was like a fly in a jam jar – going to events, exploring new places, seeing my friends and family, and making the most of every day! So not being able to do this for five months was really tough, but I knew that after chemo, once my bloods recovered, I’d be able to do this again, I just need to be patient (unfortunately, I’m a very impatient patient!)

The Stockholm wobble

But about three weeks into my recovery, I had a bit of a wobble… I felt the lump again. I was convinced that I hadn’t been able to feel it at some point during chemo, so my immediate reaction was “oh my god, it’s growing back”. In reality, the MRI at the end of chemo showed that the lump hadn’t gone completely; it was still there, but was significantly smaller than it had been. But because I’d thought it was gone, being able to feel it again made me panic.

Looking back, I think I was just over-complicating things. The idea of having chemo in cycles is that you hit it hard, then give yourself time to recover, but not enough time for the cancer to recover too. For the past five months, I’ve had medics regularly checking my blood levels, feeling my boobs, and pumping me full of chemicals. So suddenly not having all that going on, I was worried that the cancer was getting up to no good inside me, and I found myself almost wanting chemo… a bit like Stockholm syndrome, if that makes sense?

Either way, I preferred to let the doctors know, so they could decide if we needed to move surgery forward. So I called the hospital and asked to see the surgeon again, mentally preparing myself for canceling my holiday and heading for surgery the next day! Luckily, my friend Em was in Amsterdam that week, and came with me to see the surgeon, and afterwards, she told me she’s never seen such a look of relief in anyone’s face, as she saw on mine when Dr Donkervoort said “in my opinion, it hasn’t grown”! Clearly, surgeons don’t expect to be asked to clarify! So when Little Miss Paranoid here asked “so you’re happy for us to stick with 10th May for surgery?” her response was simply “Rebecca, go and enjoy your holiday!”

So that’s what I did! I went to London, caught up with my friends and family, met my seven-week old cousin for the first time, then flew out to Barbados for ten days in the sun!

Time for the boob job!

So now back In Amsterdam, I’m preparing for the next stage of treatment: surgery.

The operation itself is a lumpectomy (removing a lump) rather than a mastectomy (removing a boob). My surgeon proudly told me this is a straightforward procedure for her, and on average takes her 62 minutes (I like her precision!) However, if the the tumour is larger than we see on the scans, she’ll need to take more than planned. Her view is that she’ll take as much tissue as she feels necessary, to maximize her chances of getting it all. I guess this is obvious, but still felt reassuring to hear! She also suggested she could keep the scar pretty discreet, as it’s around the edge of the areola (the larger circular area around the nipple) – nice to know, but not something I’m frightened of – scars make us who we are and every one has a story to tell, right?!

There’s also a second part to the surgery, which is to remove any naughty lymph nodes. In the axilla (armpit), most people have around 20 nodes, and on my scans, four of them looked up to no good. However, the biopsy found no cancerous cells. So based on experience and what they saw on the scans, they think four of my nodes are naughty, but until they get one under a microscope, they can’t be sure. Rather than just wip them all out, they’d rather leave them alone if they can (as these things do have a job!) So the plan is to take one, send it off for analysis, then if it proves nasty, I’ll have a second operation to go back and take out the other three.

About a week after surgery, we’ll have the results show, when I’ll find out if I’ll need a second operation to take out the other naughty lymph nodes. I’ll also find out what treatment I’ll need after that – just radio, or a combination of radio and more chemo. The best scenario is that I don’t need a second operation or extra chemo. I’m mentally prepared for both, but for now I’m just thinking about getting through the next week or two – the surgery tomorrow and recovery afterwards.

To help me, I have Nurse Kari Immelda Gertrude Allen – she arrived today and has so far bought one new blouse, cooked enough pasta to feed an army, had my parents in hysterics on FaceTime, and played a vital role in helping me hang five pictures “up a bit” “left a bit” “more coffee?”can’t you just whack in a nail?” “y’know, coffee makes a great skin scrub”… She’s expecting a casting in the next series of Grey’s Anatomy, and while I’m recovering from the anaesthetic, I am completely expecting her to take silly photos of me, dressed in delightful hospital gown, with precariously positioned post-it notes, and shameless selfies to keep you posted via Instagram! Watch this space!