Breast Cancer: Diary of a DIEP #2

THE FIRST NIGHT POST SURGERY: the challenges and the mistake I made

A nice bright pattern because I find it cheery. Katie Rainbow 🏳️‍🌈 on Unsplash

Friday 17 November

I had been warned that the first night post mastectomy and DIEP flap surgery would be tough. Women I’d spoken to who’d gone through it already, medics I’d consulted and the information I’d read in books and online all seemed to indicate it was likely to be the most challenging and intense time physically of the whole recovery.

As well as speaking to the breast care nurses in my team, I had also chatted to my amazing ‘Someone Like Me’ volunteer at Breast Cancer Now who had been on hand to answer my ever mounting pile of anxious questions in the run up to surgery, (more about that brilliant support scheme coming up in later posts). I had digested the chapter in Rosamund Dean’s super-helpful book Reconstruction about her DIEP Flap and just a week before my mastectomy, I had met the wonderful women from the charity Restore, some of whom had had the DIEP Flap option and who talked with frank honesty about their recoveries.

It’s fair to say I was pretty prepped for what may or may not happen during that first night and I’m very glad I was.

After eight hours in surgery on the Friday, my first night in St Thomas’s hospital lay ahead of me.

As well as having numerous tubes coming out of me, a drain to collect the blood from the left breast that had been operated on, a catheter to collect urine, a cannula for pain relief and tubes going into my nose to provide extra oxygen, I had the additional fun of the obligatory heated blanket which I later found out is called a Bair Hugger (Having only heard the word Bair spoken and not seen it written down I initially presumed it was a ‘Bear’ of the Paddington variety. Slightly cuter).

When I was first told, in the weeks preceding my surgery, about the necessity for a ‘heated blanket’, I also imagined some kind of soft and downy comforting quilt.

W-R-O-N-G. Picture the inflated tubular packaging that a large fragile item might be wrapped in when it’s delivered to your house and you get the idea.

The ‘blanket’, which resembled a light-weight translucent lilo, was positioned over me and also had its own (troublesome) tube attached to it to keep it inflated.

I was informed it wasn’t an optional extra. It’s essential. After all the post-op swelling in the breast area following surgery its crucial role is to keep the area warm and assist blood circulation to the newly reconstructed breast.

Now, I am usually the sort of person who likes ‘wiggle room’ in bed. If, on the rare occasion I find myself in a hotel room with neatly tucked in sheets, the first thing I’ll do after climbing in is use an extended leg to kick out all the edges and de-tuck them. I don’t like feeling hemmed in and have been known to break into a mild panic when unable to immediately release the zip on an item of clothing or when my head gets momentarily wedged into the slightly restrictive neck of a polo-neck jumper.

The first night post-surgery I could not have been more ‘hemmed in’. With the tubes, the heated-blanket-lilo-Bair Hugger and the fact that I was restricted to lying on my back and unable to move, (and I’m someone who always likes to sleep on my side), it was a challenge.

However, on the plus side the physical discomfort was hugely allayed by the mental relief that my surgery was over and from the brief snippets I’d gleaned from the medical team in my post-anaesthetic fug, it had gone well.

As I lay immobile in my cocoon of tubes and blankets and propped pillows - including the one I’d brought from home on that (not) fun morning bus-ride - the recurring thoughts that kept bursting and sparkling in my mind like little stars of joy was, ‘The cancer is out. It’s gone.’ The lobular tumour, which had been growing silently and invisibly like a web in my left breast, or as one surgeon described it ‘like strands or tentacles’, had been removed. Farewell fucker.

Another huge mental comfort was the distraction of the 5-star view from my room’s window - and no, I hadn’t forked out for some kind of private upgrade, the room with penthouse-suite views that I was allocated on the 12th floor in Somerset Ward is standard NHS practice at St Thomas’s after the kind of major surgery I’d had. When a nurse asked on that first night if I wanted the blinds drawn I said, ‘no thanks’ I wanted to soak up the sight with every pore in my being. Suffice to say the blinds remained up for the duration of my stay.

Watching the nocturnal lights flickering on the Thames, looking at the skyscrapers and high-rises stretching into the distance, some of them beautifully lit in purples and golds, provided some kind of relief and distraction from my circumstances

(I made this little video on my third night in hospital)

As well as the pink and violet glow of the London Eye, I could see the illuminated dome of St Paul’s Cathedral on the horizon and the familiar curved architecture of Charing Cross station that I’d used for years on my commute to Covent Garden. I could see double deckers queuing outside County Hall on Westminster Bridge and make out the tiny figures of people getting on and off. Meanwhile boats, some of them illuminated party boats were powering up the river. People were going about their business and their fun, drinking, dancing, off to bars, off to meet dates. Life was going on just as it always does and I liked that. It made me feel connected and I knew I would be out and amongst it just as soon as I could be.

(I should probably just add at this point, I am well aware that my ‘room with a view’ was a huge bonus and I realise most patients in recovery at other hospitals aren’t treated to such delight. I was lucky and I was definitely going to make the most of it).

So there I was. My first night post op, feeling like the meat in a tightly packed sausage roll, (a sausage roll with lots of tubes coming out of it), looking at the view experiencing a mix of relief mingled with the after effects of a general anaesthetic and major surgery.

So did I manage to get any sleep that first night?

In a word, no.

I had already been told that a nurse would be coming in every hour throughout the night to examine my breast, check my blood pressure and run other various checks. That’s a lot of checking. On the one hand that me feel reassured but as a very light and restless sleeper at the best of times, I knew any meaningful or restorative slumber was probably going to evade me.

At the start of the night I just about managed to get to grips with the bed and the array of control buttons which could tilt, slant, raise and tip it at various angles, (albeit a few jerky mistakes meant my knees suddenly found themselves raised when I didn’t want them to be at various times in the night).

I had managed to put on my front opening buttoned pyjamas, (essential first night kit. Mine were from Uniqlo) although I have no memory of getting into them. Maybe someone else put them on me? I was also wearing the special front opening post surgery bra that I had bought from M&S.

A nurse called Paulina introduced herself, (and like all the staff was wearing a yellow badge with her first name on, a helpful addition, especially with my increasingly poor meno-memory). Paulina explained she would be checking in on me once an hour and reminded me that if I needed any more pain relief I could self administer it by pressing a button that would release more into the cannula attached to my hand. She also made me aware of the call button next to my bed in case I needed any extra assistance at any time.

As I said, I haven’t been a great sleeper for many, many years. The peri-menopause played havoc with my already fragile sleep patterns and as the minutes and hours passed it soon became clear that any hope of sleeping on that first night post-surgery was fast evaporating.

As the night began I lay looking out the window before closing my eyes in a vain attempt to sleep. Every time I heard the very noisy and creaky door to my room being opened, Paulina found me wide awake and poised to switch on the lamp by my bedside so she could see what she was doing as she opened the front-facing clasps on my post-surgery bra to examine the breast and run through the list of checks.

The next seven hours continued in that pattern. I may have drifted off very occasionally but any sleep I got was just ten minutes snatched here or there and usually just before I heard the door open again. I had my earplugs to hand but I don’t remember using them. I preferred putting my headphones on and listening to my ‘Calm’ playlist on Spotify which I curated many years ago and which is my go-to list of songs. I did this not only because I’m someone who loves listening to music on a daily basis, but because my room was situated just next to the nurses’ station which meant as well as hearing the muffled outline of their conversations I was also treated to the less muffled sound-effect of loud beeps every time anyone else on the ward pressed their buzzer asking for help. Which as it turned out, was quite a lot of the time. Strangely, although disruptive it made me feel reassured knowing that other patients were nearby and navigating their own plethora of challenges.

At about 3am and having done a lot of listening to the likes of Radiohead, Goldfrapp, Bicep and George Michael on my ‘Calm’ playlist, (although one of my all time favourite tracks, Insomnia by Faithless, would have been more appropriate), having had my breast examined numerous times by Paulina and with proper sleep still not happening, I put on my trusty podcast of Parenting Hell with comedians Josh Widdicombe and Rob Beckett. The two of them have kept me entertained, distracted and comforted ever since they began their podcast in lockdown and over the years they’ve become like two mates. I always know listening to their chat will make me feel better. I’m sure they'd be surprised to learn that even though their podcast is essentially aimed at the parents of young children, they have helped a 52 year–old woman with teenagers navigate a mastectomy as well as the anxiety-inducing stresses of take-offs and landings on planes, a scary three-night stay in a Turkish hospital during a family holiday and numerous other stressy times. To put it simply, they are my go-to comfort blanket podcast of fun, distraction and cheer no matter what time of day or night.

Anyway, the night continued. My lack of sleep continued. The tube inflating my heated blanket/lilo fell out several times meaning I needed to press my buzzer for assistance to try and get it back in as I was unable to move to do it myself - as well as a new reconstructed breast I also had the new incision running from hip to hip where fat had been taken out to fill the hollowed out boob and blood vessels reconnected using micro-surgery. Manoeuvring around was not an option. Paulina continued to come in every hour and all the while the night time sky slowly turned from inky black through various shades of grey as dawn approached.

And then it was Saturday morning. The sun was attempting to come out behind the wintry November clouds. Paulina was gone and a different nurse called Caroline whose shift had just begun came in.

The darkness had made way for light and with it my fears had subsided to be replaced by relief and a sense of achievement.

I had done it. I had got through the first night that I had been warned would be the most difficult. This seemed like an important milestone completed.

So what was the mistake I made that I mentioned in the headline. It sounds silly but it was not using enough of the pain relief that I could self-administer. On that very first night for some strange reason, probably due to the combination of exhaustion, lack of food, (I hadn’t eaten since Thursday evening) major surgery and anaesthetic, even though I had been told I could self-administer the pain relief by Paulina I had treated it as though it was liquid gold only to be used if I was in extreme pain.

When nurse Caroline took over on the morning shift and asked how I was doing and I explained that I was feeling pain in my abdomen as well as the tender area of the mastectomy, she looked at me and said, ‘Why haven’t you been using this? You’ve hardly touched it!’

My answer was, ‘I don’t know. I didn’t think I was really supposed to unless it was really bad’.

So dear reader. Do bear that in mind. Make the most of the pain relief on offer. It’s there for a reason. Don’t be like me.

And please remember, everyone’s recovery is different. Everyone will experience different feelings and emotions. I have since spoken to women who say they really loved the ‘Bair Hugger’ and that feeling of being cocooned. So you never know, maybe you will too.

Next time: Day one of recovery. Why I suddenly felt I didn’t want any hospital visitors and how I failed to stick to the planned ‘timetable’ of recovery.

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Thank you for reading x