R is for ‘Recovery’. Part One. 

\ ri-ˈkə-və-rē

1. The process of becoming well again after an illness or injury.
2. The process of becoming successful or normal again after problems.
3. The process of getting something back.

Such a small word for such a big concept.  Recovery from cancer is never going to be an easy, straight or simple road.   Neither is recovery from a mastectomy and DIEP reconstruction surgery.  

You last saw me being wheeled onto a ward while wondering if I’d slept with the male nurse who for some reason seemed to want to show me his tattoos (he didn’t and I hadn’t).  And then it all began. In DIEP surgery, the first 24 hours after the operation has finished are crucial as there’s a big risk that the re-plumbed blood vessels, which were moved from the stomach to the breast, will fail.  If they do it can lead to the new tissue in the reshaped breast dying off, starved of vital blood. 1 in 10 of all DIEP patients end up back in surgery within 24 hours of the original operation due to complications with the blood supply.  So for the next day and night everything that can be done to keep my ‘flap’ (the slightly grim word for the moved flesh/skin/veins) alive is done. And that means a pretty damned uncomfortable 24 hours for the patient (i.e. me). Bear in mind that the patient (me again) has spent the last 10 hours (at least) on an operating table so still has a large amount of general anaesthetic swimming through their system, alongside the generous helpings of opioid painkillers (mostly fentanyl, the drug that killed both Prince and Tom Petty) and anti-nausea meds.  They are, to put it mildly, dopey and their only instinct will be to sleep. If that’s ever really possible in those terminally uncomfortable NHS beds and scratchy sheets.  

But several other obstacles are put in the way of the Diep patient getting restorative sleep.  First up, the flap has the best chance of survival if it is kept warm. So please welcome onto the scene the Bair Hugger (sic).  This is basically a large blanket that is continuously pumped full of hot air from a generator attached to the end of your bed. Sounds cosy right?  Like a big warm hug? In reality, on the superheated NHS ward, being pinned under a heated blanket is as close as I’ve ever come to feeling like a chicken in the oven.  Gently basting in your own juices. Lovely, eh? And if sweating like a gross sweating thing wasn’t enough then the generator creating all this heat is as noisy as fuck.  I can see why it’s called a bair/bear hugger. It’s like having the sweaty heft of a grizzly sitting on your chest while it simultaneously and continuously growls right in your face. I felt sorry for the other women on my ward who must have hated me and my bair by the end of day one.  Top tip to anyone about to have DIEP surgery – one of the ‘must have’ items on the packing list is a fan (those hand held USB ones are a life saver).

So obstacle to sleep no 1. Sweaty, growly, grizzly.  Obstacle no. 2 are the leg milkers (not their technical name).  You’ve already been lying down for at least 10 hours and you’re going to spend the next 24 hours or so also flat on your back so a big concern after such major surgery is blood clots.  As well as anti-clotting injections (which hurt like fuck btw, what is it with them? Teeny, tiny needle, big old sting), you’re also fitted with a lovely pair of large inflatable booties that encase your legs up to the knees.  And pump them. Like you’re a cow ripe for the milking. Sequential Compression Devices they’re called. They inflate and deflate continuously, squeezing and releasing your legs to encourage blood flow. They are a good thing. But they’re also jeffing annoying as they alter the pace at which they squeeze/release so there’s never any rhythm you can adapt to, can get in the flow with.  And for me that’s a guarantee that I’m going to stay awake waking for he next squeeze even when pumped full of enough opioids to fell a (pint-sized) pop star.  

Obstacle 3 is the Doppler test.  This is the most vital part of the whole shebang and also the hardest part to ignore.  Anyone who’s ever spent time in a hospital bed will know that the nurses do routine and regular ‘obs’ on their patients throughout the day, usually checking temperature, blood pressure and oxygen levels.  For women who’ve just had the DIEP surgery, these obs are done every 30 minutes along with the Doppler test. The nurse uses a small ultrasound wand to scan the section of the newly formed breast where the blood vessels from the new tissue have been joined to the blood vessels in the chest.  The Doppler bounces high frequency sound waves off circulating red blood cells so that the sound of blood moving through veins and arteries can be heard. As it’s vital that the blood supply to the new breast tissue is strong enough to stop it from dying off, this test has to be done frequently to ensure that the blood is continuously flowing well.  

So every 30 minutes for your first 24 hours on the ward, a lovely, well-meaning nurse has to rouse your grumpy, dozy ass self (who probably hasn’t managed to fall asleep properly anyway) and expose your new boob to the cold air so they can wave a wand over it.  The sound you want to hear is like a heartbeat, just as you hear when having a ultrasound on a pregnant tum. The first time the nurse did the Doppler on me and the beating heart was heard I dopily (and doped-ly) asked her if it was a boy or a girl. I thought that was hilarious.  The nurse not so much.  

So those first 24 hours after the op are a trial.  Your body has been battered about for 10 hours straight, then for 24 hours you are deliberately deprived of sleep by hot air, pumping legs and being scanned like a cheap supermarket ready meal every 30 bloody minutes.  After that things do ease but personally I’ve never felt so ill, drained or just plain toxic than I did for the five days I stayed in hospital. It’s maybe not surprising after such a massive surgery but just how rotten I felt took me by surprise.  Even when my lovely Breast Care Nurse had repeatedly warned me ‘you will feel like you’ve been hit by a bus, then a lorry, then another bus’ and ‘you will think you’ve made the worst decision of your life’. Still in my optimism I had packed my knitting and novels and loaded my iPad with loads of film and TV box sets, imagining I’d be perkily sitting up in bed crafting and binging Netflix.  In reality, the combination of drugs still swilling through my system (now also including mega-strength laxatives as 10 hours under sedation brings everything to a grinding halt) and the restrictions on movement imposed by a catheter and drains (to remove excess fluid from the surgery sites) meant that I didn’t even pick up my phone to check messages or Facebook for the entire time I was in hospital.   And anyone who knows me knows that is a massive indicator of just how shit I was feeling.  Suffice to say I did not manage to knit a hat or catch up on any/all of the Marvel movies I missed. I was lucky enough to have visitors every day I was in hospital which was a welcome distraction but even the loveliness of having family and friends hugs and chat was too much for me after an hour; anymore and I was completely shattered and longing to crawl back into bed.  

Which reminds me.  The first time I got out of bed after the DIEP operation is one of the most excruciatingly painful things I’ve ever endured.  It has to be done of course and the hospital like you to move from the bed to the nearby chair as soon as possible but when the physios came to show me how to move (by rolling onto my side, then using an arm to push upright) I was terrified.  I’d just had my body cut open from hip to hip and the thought of getting up gave me visions of that scene from ‘Alien’ when John Hurt’s chest explodes open in a mass of gunk and alien spawn, except this would be lower down and less alieny. In reality, of course, the chances of me splitting open from hip to hip and flopping backwards like an especially gory Tom & Jerry cartoon was zero, but also in reality the simple roll, push up, sit up movement was so painful I just wanted to vomit all over the physios who were torturing me.  I later found out that a lot of women do indeed faint and/or throw up at this point. Delightful. The first time was definitely the worst but every time I had to move from lying to sitting, or sitting to standing for the next 2 months took more mental preparation, focus and determination than I had ever thought such a simple movement would need.  

Because one of the things they warn you about while recovering from DIEP surgery is a ‘tight tummy’.  Before the op, I understood this in theory because I knew that were taking out a huge ‘wedge’ of my middle and sewing me back together again.  What I didn’t realise is that in most cases, when they come to do the sewing-you-up-again they have to physically raise your legs in the air at a right angle, just so the two sides of your skin can actually meet.  Of course when you do this, you’ve hugely reduced the range of movement possible and what they really mean by ‘tight tummy’ is ‘we’ve sewed you up so tightly that it is now completely impossible for you to walk upright or lie flat without worrying you’re going to snap in half’.  In the days and weeks immediately after the surgery as I slowly started to get moving, walking short laps up and down the hospital corridors then my garden, adding more laps each day but bent over like a rickety old lady, only one image came to mind …

Even now, a year after my surgery that ‘tight tummy’ feeling is always present.  It’s something that my brain has managed to accept as my ‘new normal’ and, to be honest, I’ve forgotten what I felt like before.  It’s not painful most of the time (an occasional twinge as the nerves damaged in the area start to regenerate) and doesn’t stop me from doing most things I could do prior to surgery. But it is a constant reminder of what cancer has done to me – a constant feeling of a weight sitting on my stomach, of the body being stretched, of a tautness that doesn’t ease. 

But that’s jumping ahead.  Back in the hospital I was feeling a little stronger every day, walking more, especially when the catheter came out and I had to resume peeing of my own volition (side bar: one thing they don’t warn you about before the op is that as well as pulling everything down when they join you back up again, they also pull everything up, which means that for a while at least it’s entirely possible to pee standing up.  TMI? Soz.) I also had to endure the humiliation of starting my period, entirely unexpectedly, while still in hospital. At it was unexpected I’d taken none of my usual sanitary products with me and despite being on a ward for women, the nurses said they simply didn’t have any to give me. What I was given was adult incontinence pants. An entirely necessary product for an entirely hideous problem but a bit humiliating when you’ve just got your period.  Thankfully, since my time in hospital the NHS policy has changed and alongside the male ‘essentials’ of razors (which were always provided) sanitary products will also be given to those women in need. Great news, but still a shocker that it’s taken until 2019 for the NHS to equate sanitary products as equally ‘essential’ as razors.  

Other things they don’t warn you about before DIEP surgery:

1. That sneezing and/or coughing is agony and will make you think you’re about to spill your guts like a pinata.  Even now I still hold my tummy when I’m about sneeze.  Just in case. 
2. That your first post-operative poo will be explosive, fuelled by a tonne of laxatives and all the air they pumped you with during your op.
3. That they use staples to pin back your skin flaps (eurgh, flaps again, sorry) during the op.  I woke up to find myself covered in tiny red pairs of dots and thought either a tiny vampire or an over-enthusiastic crafter had had at me.

By the end of my day five in hospital, most of which had been passed in a haze of drugs, dozing, visitor chattering, staring at the ceiling and crying uncontrollably, I was both desperate to return home and terrified by the thought of it.  While hospital stays are never pleasant, there is also something reassuring about being in the bosom of the nurturing staff, knowing that should you vomit/faint/pee yourself/poop yourself/start bleeding uncontrollably from any orifices an experienced professional is easily at hand.  At home, even with family support, just having had major surgery and knowing that you’re currently being held together by plastic thread, glue and what looks suspiciously like packing tape is an intimidating prospect. Especially when the road to post-DIEP recovery is such a long one. 

More on my stumbling, rollercoaster journey on that road in ‘Recovery, Part Deux’.