Breast cancer lesson number sixteen: If you know what you’re in for, the road ahead seems a lot less daunting

As one of life’s planners, I know how important it is to be prepared (by which I don’t just mean making sure you have enough big knickers to see you through your hospital stay). While no one knows how you are going to respond to the treatment, or how well your body will recover after surgery, I think it’s helpful to have an idea of what might happen in hospital and what gismos you might just find strapped to you when you wake up!

So, here’s a quick peek inside my hospital diary. One small caveat before you are immersed in a world of cannulas and heart monitors. Every cancer, surgeon, care team and ward is different. This is my personal experience and you may find you get a few extra goodies (or a few less) depending on what you have, what you need and where you are. This diary is also based on having a full mastectomy, a DIEP (tummy) flap and an axillary clearance.

Day zero (probably so-called because you miss most of it due to the anaesthetic)
Highlight of day: making the recovery team laugh (even though they were probably just humouring me)

1)    Breast reconstruction surgery is big surgery. As such, you get your own theatre list (of one) and a team of about 10 people dedicated to you for the whole day. This means you will be due at the hospital around 7.30am to get prepped. It made me laugh when we arrived at the surgical admissions unit at about 6.50am only to find a queue of about 15 people already ahead of us. It’s certainly not a case of first come first served in the surgery game!

2)    Once you’re marked off the list, you’re given a little room to wait in. I was also given a urine pot (lucky me) for a quick sample. Quick change into a gown, some disposable panties, some white anti embolism stockings, dressing gown and slippers, I was ready to be visited by two nurses, one phlebotomist, a surgeon, a doctor, a researcher and an anaesthetist. One blood pressure check and a quick art lesson on my boobs and stomach later and me and my post-surgery bra were escorted to the anaesthetic room (via a hot blanket machine). It is worth noting that I didn’t see the cancer surgeon (or removal man). Hopefully I will meet him one day to thank him for saving my life.

3)    The anaesthetic room consisted of me, my lovely anaesthetist (who came to visit me in the ward afterwards and promised me some good drugs), a surgical nurse, a bed and cupboard full of drugs. The surgeon popped in to wish me luck (at which point I wished him more luck!) before I was fitted with heart monitors, an arm-holding contraption and the first cannula. The room was really cold, but after two hot blankets and some sleep-inducing drugs, I was off in my happy place and gone!

4)    I believe there was then lots of cutting, cancer removing, fat moving and sewing up. Apparently, they put you in the so-called ‘Jesus’ position for the op, so they have full access to the arms. Thank god for anaesthetic!

5)    Recovery was a row of beds and lots of monitoring. I had three cannulas, one arterial line measuring my blood pressure, a blood pressure cuff on my ankle, four drains, heart monitors, an oxygen mask, a catheter, a moving bed and, the weirdest bit, an inflated hot blanket to keep my temperature up. Interesting to note that all the needle/cannula action was on my left arm. My right arm is now off limits due to the axillary clearance, so was having a nice rest after being attacked earlier.

6)    After four hours, enough morphine to soothe a small nation (they kept turning off my PCA to give me extra shots), two small sips of water (we pretended the first one was a good red wine and the second one beer) and lots of laughter (particularly enjoyed watching one of the recovery nurses trying out a moving mattress to check it was working), I was being prepared for transfer.

7)    Five minutes with mum and dad and I was set up for a night of monitoring. Everything from my heart, blood pressure and temperature to oxygen levels, fluids and pain levels were checked at regular intervals. Sadly for the nurse looking after me, my PCA was playing up. Every time I pressed the button it started beeping. One other machine also kept beeping to tell him I wasn’t breathing. This was a little disconcerting at first, but we were laughing about it within an hour. Then came boobie testing. This consists of someone pressing the boob to check for blood flow and then holding an ultrasound monitor to the flap to wait for a pulse.

For a short day, it was a pretty long journey. Key aim: get through the night.

Day one
Highlight: Morphine, morphine and, oh yes, more morphine

1)    Day one was a dark day. While it was wonderful to lose the heart monitor, the hot blanket, the drips and the constant checks, it was a day defined by pain.

2)    I was visited by a surgeon and I was, at last, allowed some food. But, there was only one thing I wanted: drugs. I couldn’t even get out of bed.

3)    Rest of day was a bit of a blur. I felt like my tummy was ripping apart so got into a routine of: pain, tears, drugs, pain, tears, drugs (and tea), pain, tears, drugs! You get the picture!

4)    One piece of advice: don’t worry if your limbs swell up. My right arm trebled in size and a nurse suggested it could be permanent. I looked alarmed, but was later reassured it’s just post-surgery swelling. It eventually goes down – and it did!

Day two
Highlight: A shower

1)    What a difference a day makes! Following a ward round that it sound like I’d be going home tomorrow, I got up, got showered, had more morphine, got out of a gown and into a nightshirt, had mashed potato, had more morphine, saw family and friends, watched as 15 people crammed into the bay opposite and started praying, had more mash and more morphine (now morphine mash would be a novel idea).

2)    There was a lot of peeing. With the catheter out, I got up six times (with a nurse). By the sixth, I was pleading with my body to stop. The nurses laughed along, but did have morphine on tap!

3)    I went into hospital with a grannie leg (full of metal, hates the cold) and I now have a grannie stoop (bent double due to tummy tuck). Nurses said I had aged about 30 years.

4)    One thing that hasn’t featured yet? Sleep. Yep, there wasn’t a lot of that, but when you’re looking at the London Eye all lit up at night, it could be worse.

Day three
Highlight:
Less peeing, more mash

1)    Hospitals come alive on a Monday. I had seen my surgeon, my breast care nurse, a physio and a pharmacist before I’d even had a cup of tea! The surgeon was very kind, even though he insisted on shaking the hand on my bad arm twice (this was a very swollen arm with limited movement)

2)    When drains produce less than 30ml of liquid in a day, they’re out! As a result, two came out today. I obviously look friendly (or a bit gullible) as they requested a student take them out. She was brilliant though and will make a fantastic nurse.

3)    Glad to report, had lost a few years with less stooping.

Day four
Highlight: Taking the stairs

1)    When you’re helped to the toilet through the night, it is quite disconcerting to be told that on day four, you’re flying solo. Today was my equivalent of independence day, and I am delighted to say, I passed with flying colours. A wash, a walk, a flight of stairs and many toilet trips later and I started to doze off in my chair at 2pm. Yep, I am still 32 not 102!

2)    Slight blip came from the mirror moment I wasn’t expecting. Have suggested to the hospital that this is planned for others next time. The body has been savaged and, if you’re not ready to look, it can be quite scary. I am, however, delighted to think I might have had a slight augmentation factored in (although that could be the swelling).

3)    Drain number three came out. They don’t really hurt, but this one felt like it stretched the length of my abdomen, so was a like a worm inside my abdomen.

4)    I slept for four hours (did a little stooped dance round the bed).

Day five (to seven depending on speed at which you recover)
Highlight: A poo and home time!

1)    After many doses of Laxido (don’t be fooled by the orange smell, it tastes of gritty nothing), I have conquered the constipation. Was threatened with suppositories, so that may have done the trick!

2)    I passed the final drain test, so no need to carry it home. The doctor on the ward round said: “you’ve done really well”. Yay, big tick on my medical notes!

3)    Having cleaned out the chemist (bye bye morphine, but hello truck load of painkillers), said nice things on feedback forms, and signed my discharge papers, I am given permission to leave the building!

4)    One word of advice: use a wheelchair to get to the car park. I foolishly thought I would demonstrate my straighter posture to my mum and Duncan’s dad. The walk was fine. The lift was hell (felt like every jolt would rip my stomach apart).

5)    Back home and trying to get into a routine – but that’s another blog story!

Phew! That was a long six days. Am tired just thinking about it – and I’ll bet you’ll have sore eyes if you manage to get to the end of this post. 

Breast cancer lesson number eight: Fashion has its place, just not in the hospital

Dress with confidence and you will feel good. It’s a lesson I learned with my hip surgery, having spent months in black joggers and oversized jumpers. I didn’t want to look in the mirror, not because I didn’t like myself, but because the picture never changed. Not this time!

When I started this process, I promised myself I would do everything in my power to stay true to myself. That means bright pink tops, navy dresses, pink belts and matching ballet pumps. For those of you who know me well, you’ll know I am not the least bit vain – I painted my toes for the first time ever last year and it took me years to realise that green cords and a long brown jumper are not going to get you anywhere in publishing! I only decided to match my shoes with my clothes in 2009 (maybe I have said too much)!

When it comes to fashion – by which I mean dressing up not being on trend – however, it seems cancer has other ideas. Take this morning, for example. I selected a pretty navy lace top (a birthday present from my parents) for a fertility clinic appointment, so convinced was I that I would remain fully clothed throughout. Twenty minutes in and I was wrestling to remove my top so that the nurse could take more blood. Trust me, bending over while trying to get a top over your head when you can’t reach the button at the back, is not a good look. I resembled a magician trying to escape from a straightjacket – a fact that didn’t go unnoticed by the nurse who thought my determination to get it off unaided was hilarious. I am glad to say the top survived – but it was a close call.

The sad thing is, it seems one wardrobe malfunction is but the tip of the iceberg. Then there are the knickers. Recommended post-op knickers for those who are having the rather glamorous tummy tuck (or DIEP flap to be scientific) are big. And, by big, I mean HUGE! Bridget Jones would be proud. I was hoping my artificially flat stomach would stay in on its own, without the extra support!

Only piece of good news is that I can’t wear them when the two drains sticking out my stomach are still in place.

Let’s not forget the bras! As I am opting for immediate reconstruction, I must confess, I didn’t think I’d need a special bra. How wrong was I! While I admire the care and science that goes into creating post-surgery bras for women, I have to say, my heart sank when I went to a department store on Oxford Street yesterday to pick up a couple. For starters, you need to go up a back size because of the swelling – and no woman wants to go up a size in anything other than cup size. Visiting a lingerie department for a post-surgery bra is like going to a sweet shop and coming out with an empty paper bag. You feel special for all the wrong reasons and you generally don’t get lace or ribbon or silky bits. They also don’t come in navy or pink, which, as explained above, is just not part of the Scully colour palette.

The lesson here is, don’t go to the high street – shop online. From the sofa, it is easier to admire the craft and healing fibres without feeling like you’re missing out.  You are even exempt from paying VAT, which is a bonus (just make sure you call customer services to claim back if the option to remove VAT is not available).  I also have brand recommendations if you’d like them, courtesy of my lovely breast reconstruction nurse.

One interesting discovery in this rather unfashionable episode, was that around 80% of women are wearing the wrong bra size. Having discovered this fact, I promptly dug out the tape measure (useful bra fitting guide link should you wish to follow suit). I have been a 34B for as long as I can remember (even though my dress and top sizes have altered). Thankfully, I passed the test and have saved myself from the shame of having to admit to hospital staff that I had over inflated my assets.

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I am pleased to report, however, it’s not all small boobs and big knickers. Determined as I am to feel myself in hospital (after the morphine has subsided), I have splashed out on lovely nightshirts (not my first choice in nightwear, but if you ever need a button down shirt for easy access, I have some good tips), a soft dressing gown and fluffy slippers. I now also have a rather stylish selection of zip-up sweatshirts, which I think will be getting a bit too much wear post-surgery.

Cancer, you can have my right breast, but you won’t take my style – what little I have of it. I plan to dress to impress, even if it’s only for the lovely ward staff!