Epilogue – The amazing Mr Nicky B

Mrs Nicky here again. Sorry for such a long time between posts. I think the title might tell you where this one is headed…. Nicky always said he hated blogs that suddenly stopped, only for a grieving relative to put a final post, so for a long time I’ve resisted…. but it’s been nagging away at me and I feel that I owe you an ending…. I’ll pick up where the amazing Nicky B left off in Jan….

After “Vesuvius” erupted, things calmed down for a bit. We got to know the district nurses well, as they came in for regular dressing changes as Vesuvius was still pouring, though with less of a head of pressure behind it – initially daily, with me picking up the second change of the day, then gradually down to weekly as it eased off and started to heal up over the next few months. Not that it was all plain sailing. There were frequent stays in both Basingstoke and our local hospital with sepsis; renal failure (you’ve never seen me move so fast to grab a nurse and get a cardiac monitor as when Nicky casually mentioned, while sitting in a side room waiting for the medical team to review his worsening renal function, than the out-of-hours GP had told him that his potassium was 7.2 – that’s I’m-about-to-have-a-cardiac-arrest high, for any non-medics reading!!); more sepsis; another Vesuvius, which erupted from the same site just as the old one was finally healing; more surgery to place a new drain, remove and replace ureteric stents, put in nephrostomies, take out nephrostomies, replace nephrostomies, change nephrostomies; more sepsis…. you get the idea! The staff in the Premier Inn near the hospital in Basingstoke got to know me well and always asked after Nicky.

We did manage a weekend away in Suffolk with Nicky’s side of the family and a week away at CenterParcs with my side of the family, both of which were very special. Unfortunately, Nicky was in hospital when we were due to go to Disneyland Paris, and again for the rescheduled dates… so I ended up taking Ethan with his Godmother – a truly fantastic friend.

The run up to Christmas was marred by another hospital admission and another eruption – this time a more serious one, which turned out to be a fistula between a bit of small bowel and Nicky’s scar, so he ended up with a second, more challenging “stoma” to manage in addition to the first. We got so proficient at managing them, that I ended up running an ad hoc teaching session for some ward nurses on stoma care!

We managed to patch Nicky up sufficiently to allow him to spend Christmas at home – a quiet day for the three of us, which was perfect. From January, he was back in and out of hospital, getting increasingly unwell and frail…. culminating in a bad fall in February, which left him bed bound. Then his kidneys packed up again. He was transferred to the local hospice from Basingstoke on 4th March and died peacefully in his sleep in the early hours of 8th March, with both his mum and me holding his hands.

Ethan and I, and the rest of the family, are trying to carry on as Nicky would have wanted – enjoying life as fully as possible and refusing to let his cancer beat us. We just had another lovely holiday to Disneyland Paris, have been busy catching up with friends and are doing lots of fundraising for charities close to Nicky’s heart. Some days are harder than others – my birthday, and what would have been our tenth wedding anniversary both fell in the month following Nicky’s death. His birthday is in four days’ time and father’s day is rapidly approaching. But there are two choices when a loved one dies – allow your life to falter too, or celebrate the time you had with them, keep the memories strong and carry on…. Too upbeat for cancer.

If Nicky’s story has moved you and you would like to do something in his memory, there are several different things you can do. We are supporting two charities that helped us – Ellenor hospices in Kent and Willow Foundation. Links to our JustGiving pages are here:

Willow Foundation: https://www.justgiving.com/nickyboardman/

Ellenor Hospices: https://www.justgiving.com/Kerry-Boardman/

You can also donate blood. Nicky had numerous transfusions during his illness and was passionate about trying to raise awareness of the need for blood donations. Please consider registering as a donor. You will save lives.

Thank you for reading. The support here meant so much to Nicky. Now, go away and do something fun in his memory… particularly if it involves watching a superhero film!

Chapter 21 – Don’t worry, I’m still writing this thing!

The long, long road to skipping got back on track with my transfer back to the normal ward, however. One of the first things to happen was a good long chat with my surgeon (you know, the dapper one – I think he was wearing otter hide briefs and a kerchief, I’m not sure) where he broke down the state of play. Considering the parlous state of affairs I was in before surgery the news was good. So let’s break it down, as I’m asked this a lot and it’s pretty important. Things have moved on a little since then but we will get to that as the blog continues.

– All physical signs of disease were removed.
– it hadn’t metastasised to other organs (lung, brain, etc)
– Biopsies of the little shit showed it hadn’t spread to my lymph nodes. Officially A. Very. Good. Thing.
– Because I’d responded to Chemo and had successful surgery he didn’t think I needed any additional treatment.
Importantly, this disease will always lurk and could return at any time. That could be a month, a year, a decade from now, but the spectre was there.

Ultimately, taking into account that I had taken a long ride up the legendary waterway made of poo, and forgotten both map and paddle, I had a great deal to be grateful for. Time to work on recovery. First things first – time to start losing all the tubes and bags. My tummy looked much more red and painful than it really was and I could feel the staples tugging on my skin so off they came. 100s of years of advancements in medical apparatus had got us to the point where we were now able to remove them quickly and delicately with, er, tweezers. Time to pluck those rusty old things out over 45 very peculiar feeling minutes. Lovely. But the itching had vastly improved as a result.

Next up were the drains. Again, the wonders of science astounded me – they were removed with a good strong tug, basically. Nothing was draining into them other than a few drops a red mucusy water so we decided to get me trailing a few less cables. To remove – lay flat, deep breath, nurse yanks. The sensation is one straight out of horror, and kind of interesting and funky in a grim way – for a few seconds it feels like a live worm is working its way across your abdomen but under your skin. With that, you’re not quite sure what’s happened and the nurse proudly holds aloft a slightly bloody tube. Tick that box off. Big puffy boots come off, exposing manky, sweaty feet. Tick that box off. The only real temporary annoyance left was the central line which they had moved to my neck to keep the veins strong. Dangling from just beneath my right jawline was a jumble of coloured ports and tubes, reminiscent of an African tribal necklace, and bound in oodles of medical tape which prevented much head movement. The unfortunate by-product of this positioning (thanks a bunch, stupid veins) was that I struggled to turn to my left. The door to my room was on my left. Therefore, every visitor had to suffer me groaning, bug-eyed with a rictus grin to mask the pain as I slowly tried to work out who had come in, because the only way I could see was in the form of some grim parody of Whatever Happened to Baby Jane? The day of removal was therefore subject to great circumstance, and I celebrated by slurping my first ‘solid’ food in three weeks – a bowl of tepid custard.

With that, a routine was settled into. Get woken at 6am with medication, breakfast at 7am of toast and honey and a pot of tea. Occasionally throw tea over self, swear a bit. Watch BBC Breakfast even though it essentially loops every 30 minutes. Haul frame onto chair while bed is changed. Haul frame back into bed. Get nagged to use the bathroom. Shuffle to bathroom and slowly wash, shave, brush teeth. Having a shower was hard as I had to perch precariously on a stool and try not to ruin all my dressings. It was also a struggle as it meant I had to catch sight of the full damage done to me in the bathroom mirror. It was nice to see myself stooped over, wrapped in dressings, elastic straps and dangling bags and tubes. It was a graphic visual reminder of all I’d endured. Once I emerged clean but exhausted my daily dressing change took place, most painful was the adhesive of the dressings yanking my hairs out and inexplicably finding new ones each day.

After that came lunch, and that was essentially a lucky dip of discovering what my newly formed and temperamental stoma could cope with. There were a few definite no-no’s the patronising pamphlets warned you about. Popcorn and nuts made you swell up like the baddie at the end of Live and Let Die, for example. Most other things would be discovered via trial and error, or as I like to call it, ‘does this make me howl with agony 2-8 hours after consumption?’

There were two key shockers for me. I had a small portion of peas, which were very nice. About an hour later my Stoma hole began to itch. Gingerly, I peered down at the Stoma bag (see through, so you can see everything), and like a bleary eyed tortoise peeking out of his shell in the dawn light, there was a fully formed pea, a little shitty but proudly maintaining his bright green hue. He pinged out. Then another did. And another. And another. For 90 minutes I turned into a Fruit Machine that had hit the jackpot. Best steer clear of the peas, then.

I also had an inexplicable rice dish with fish and hidden chunks of raw onion. Suffice to say, I spent the next 48 hours gagging on the fermented onion miasma that poured out of my side and clung to me for dear life. It was, and still is, a case of trial and error. There’s a small core of reliable foodstuffs that get boring pretty quickly, but depending on how things are prepared, how I’m feeling, other issues such as infection, I’ve learned to give things a go if I can and not let it rule my life.

But for the first few weeks, sadly, it did rule my life. Liquid still poured out and found every possible exit under my dressings and onto my clothes. It made me desperate and miserable. Sometimes I’d stare at the bag, terrified it might fail. Sometimes it did, sometimes it didn’t. One night it leaked seven times, and as I sat on a chair changing my clothes while a nurse changed my ruined bedding, the pain of multiple dressing changes and a general sense of self pity overtook me, and I burst into tears. I remember days where the stinging pain of the leaks drove me mad – more than once I was offered gas and air. I was growing resentful, even though having an ileostomy meant I could live. It was a fact that I had to have it, but it just felt so cruel and unfair. Woe, indeed, was me.

But life wasn’t content with kicking me in the bollocks, it also wanted to steal my lunch money and call me ‘fatty-fat-fat-fat’. Shortly after my return to the regular ward I started suffering dizzy spells. I went to the bathroom to empty some bag or other and within seconds I became light headed and the room started to spin. I got short of breath and my legs started to give way. Thank heavens for sturdy porcelain, because that was all that kept me upright. And with that, I became virtually bed bound for a month. I could only sit in chairs for maybe 15 minutes before I became woozy and breathless. I staggered down the corridors on my physio walks until they got me to push a wheelchair to collapse into, and eventually gave up on me, leaving me to stew in my juices in front of Homes Under the Hammer.

I do like to cause Stan Laurel levels of head scratching and make medical professionals question their years of training, and with this I was the Godzilla stomping over the Japan of their medical knowledge. I had a brain scan (like a CT, but takes longer and your head is held in a Velcro vice), and the only thing they found was ‘a fatty deposit on top’ which I found was a hurtful way to describe my noggin, especially with all the weight I’d lost. There were two other things I discovered – 1) Sending your wife and mother a text saying ‘they’re giving me a brain scan to rule out brain cancer’ can cause stress und upset, and 2) nurses have but one joke about brain scans, it is, of course, ‘trying to see if they can find anything up there, are they?’ Har-de-bloody-ha. I was prescribed testosterone, and warned it may make me angry. It just made my thighs sticky when I smeared it on. I had regular visits from medics and a Cardiologist, who could find nothing wrong. I was put on drugs to raise my blood pressure. Lower my blood pressure, lower my heart rate and to steady my breathing. But still, I couldn’t go 10 seconds standing without crashing into something. In hindsight I guess it was pretty frightening. As the rest of me healed my body stubbornly refused to let me walk around and 3 weeks in became 4, then 5, then 6.

Until I exploded.

Kerry, Ethan and my Mum had just left after one of their much appreciated Sunday visits and I decided to take a nap. After about an hour I woke up to a smell that seemed like I’d shit myself. I couldn’t believe my stoma was leaking when I hadn’t moved and WHY THE HELL IS THE SMELL SO RANCID? I called the nurse to assist and we soon discovered the fluid dribbling down me was coming not from my stoma but from under the dressing covering my absent belly button. Gingerly we peeled the soggy dressings off and unleashed hell. A pool of green slime bubbled up and made a break from the bedding. It smelt like Bigfoot’s dick. And it. Did. Not. Stop.

Yes friends, while medicine strived to identify the root cause of my ailment a flagon of poisonous pus had begun to thrive in the spaces vacated by Clarkson. Eventually, when that space had filled, it sought the weakest point to make its escape from – Mr. Belly Button, or Mount Vesuvius as I’d dubbed it. My nurse took just a little too much pleasure in squeezing a load of green goop from my belly button, and once it would be milked no more, it was well packed and dressed. Immediately my dizziness began to ease and I vowed to take videos and photos should it happen again.

The next morning I got up (to empty some bag or other, you get the idea), and when I got back into bed I peered down. It appeared that a large creature had sneezed across my crotch and thighs. Then a warm trickle started. Vesuvius had burst its banks with my bending, overwhelmed the dressings and exploded again. So we moved onto children’s stoma bags to stick to my belly, like a little sporran of pus, and they did a good job of collecting up pus that I could then milk into the toilet at regular intervals.

With that, being in hospital wasn’t really necessary any more. I was weak and had a naughty stoma to contend with but support would be on offer at home and people tend to recover better in their familiar surroundings.

Most people.

But not me…

Where have you been, Boardman?!

Welcome back. It’s been a while! I started this blog 5 months ago for reasons I’ve talked about more than enough. If you’re still with me and still enjoying it truly is appreciated. Over 40,000 views from over 25 different countries is incredible, but the response to the blog is unexpected and surprising and has weirdly slowed up my writing. I feel a greater sense of responsibility to do it right and do it well, and now most of the doctors and nurses who have and are currently treating me are aware of the blog it’s made me a little paranoid and self conscious when I write. This knowledge doesn’t mean I’ll suddenly start telling everyone that BASINGSTOKE COLORECTAL IS A WORLD CLASS CENTRE OF EXCELLENCE FOR TREATING COLORECTAL DISEASE – that would be crass and immature, but I must admit to a few jitters. It shall not change me! But in all honesty the delays are down to ongoing health problems that mean I haven’t had the focus to write as much as I would like to. You’ll hear all about them in forthcoming chapters – you don’t have a group of surgeons rummage around your insides and expect to skip away from it.

Anyway, I hope/think things are stabilised enough to get back to writing this thing. I’ve spent summer having all manner of tests and holes stuck in me, and now as I type I have five different holes in me draining all manner of fluids, including, a soupy, neon substance that had been lurking in Clarkson’s former habitat. With that out of me I can stop passing out in front of postmen. And concussing myself. Stuff like that.

Sorry anyway. The hiatus has been too long but just wanted you all to know Chapter 21 is on its way. Most importantly though, I need to mention that tonight, Mrs. Nicky, wife extraordinaire, is walking the Shine Midnight Half Marathon tonight. She’s crazy and wonderful, with so much already on her plate she’s been training away these last few months and doing a brilliant job of raising money for Cancer Research. So, if you’ve donated, thank you, if you haven’t, don’t worry, you still have time to donate at this website.

Massive love and thanks to the remaining brave members of Team Nicky – Michelle Hills, Sandra Roscoe, El Tiangga and Nicola Lukey. Kerry couldn’t ask for a finer, more supportive group of friends. I’m truly touched you’ve given up your time (and potentially some toenails) in my name.

See you all soon – it’s about time you heard about my exploding belly button!

Chapter 20 – Hallucinations and Detonations.

Very few people believe me when I say I hate being around other humans. Small talk sends me into a cold sweat and the thought of spending a day or evening with a large group makes me want to run away screaming. I’m not very interesting and I feel incredibly uncomfortable in these situations. Heck, I thought Castaway was a romantic comedy.

So imagine my delight upon seeing an empty Critical Care Unit. I had a choice of three bays, and chose the most isolated one. Without a window. Or a working TV. It seemed like a good idea at the time. Instead I had a window in front if me looking into an office. The blinds were always down. I had a view of some beige blinds. Beige blinds. But I felt like crap and had some good old fashioned recovering to do. There were only really 2 highlights of my return to CCU. The first was having my hair washed with a waterless shower cap. They’d microwave a shower cap, stick it on my head, rub vigorously, and hey presto! My noggin was squeaky clean. The second positive was that my bed was a Transformer. At the press of a button (and with me in it) over the course of a few minutes the bed turned into a big squishy chair with me perched atop it. Sadly, I wasn’t well enough to take being sat upright for long, and would flap about like a fish out of water for a few minutes until my comfy throne reverted to its primary function.

If they were my two highlights you can guess the rest of my time wasn’t much of a wheeze. It was boring and bad things kept happening. As a result, boring things were great fun. Because I didn’t bend in the middle, nor sit upright, I’d spend hours trying to lasso and throw my bed sheets to cover my feet. The goal was to not only cover my feet, but to avoid the movement from causing embarrassing billowing of my gown, thereby exposing my meat and two veg to the world. It was a tough game.

On the whole, though, it was a case of lurching from one mishap to the next while I recovered from what turned out to be a rather nasty infection. For several reasons sleep was a challenge on the Critical Care Unit. There were always nurses buzzing around and privacy was minimal because the nature of the ward meant they had to be able to see you. One nurse in particular proclaimed she was allergic to – seemingly – everything on the ward, and spent the entire night sneezing and sniffing. This meant her ears blocked up so she had one volume setting which I named ‘Bellowing’. She liked to bellow about two specific subjects in the middle of the night, a near miss car crash she’d had a few days before and how lovely one of the porters was. If I wasn’t in permanent discomfort and her banal observations hadn’t been delivered via megaphone, her blathering would have been pleasantly soporific.

To combat the bustle of the unit and my discomfort I succumbed and accepted the sleeping tablets they had been repeatedly offering me. In retrospect this was unwise. The tablets battled against my discomfort and the noise but left me in a hazy dream state for the first few hours of the night. They also caused batshit crazy hallucinations which were particularly alarming for a clean living young man who had eschewed drugs all his life. One night, the office window at the foot of my bed became a watercolour painting of two Elizabethan warships on a stormy technicolor ocean. The stormy ocean became increasingly more aggressive until the acrylic waves spilt out of the frame and flooded my bed, toppling me out, covered in paint. This was not a good advert for recreational drugs in my mind. Just say no, kids.

The other negative of sleeping tablets that went hand in hand with the sensation of watching Eurovision after a bad kebab was that I slept through important incidents. Exhibit A – my stoma was going into overdrive and I ended up sleeping through my stoma bag filling at speed, swelling like a whoopie cushion, then bursting over my helpless body. Nothing like snapping awake at 2am covered in green slime and rapid cooling liquid shit to put a dampner on your day first thing. This marked the real beginning of my stoma paranoia – I’ve learned to sleep without moving so not to accidentally disturb it. Gives me back ache.

I had to get my kicks where I could. The intensive care doctor who was with me most of the time was about 8 feet tall but looked 12, and behaved as though his body had shot up overnight. He was skilled in all areas of medicine other than putting on flimsy plastic aprons – his massive banana fingers would tear them to shreds, and once he’d finally wrapped the plastic round his frame it looked like a cheap little crop top on him. I’d also harass him when he was trying to work at his desk. My physio challenge was to stagger to his desk, hit an imaginary bell and shout ‘2 people for one night in your finest penthouse suite, my good man!’ He’d stare blankly as my pallid arse jiggled its way back to the bed and Kerry wiped a tear of pride away at my feat of endurance. I maybe wasn’t taking things seriously.

To make matters worse I somewhat upset a student nurse when the ward team came to assess my wound. The staples and incision sites were getting pretty gunky (the dressings slurped as they pulled them off) so there was some debate as to whether to use silver-based or seaweed-based dressings. Exciting stuff. One of the ward team asked if the CCU nurses were taking care of me. ‘Sometimes, they like to beat me at night’, I whispered. The student nurse shuffled nervously. ‘They’re nurses, so they know where I won’t bruise!’ I sobbed. The student took a few steps back. I was told off later on.

I’ve just realised I’ve not described many horrible procedures in this chapter, so let’s rectify things, shall we? To fight my infection and help recovery I had all manner of antibiotics and fluids going into me pretty much 24/7. This was around day 10 – I’d stopped my sleeping tablets following the exploding shit incident in case of rapid response being required. The nurses had given me my drugs and I was trying to drift off. I’m sure this has happened to many of you – my body suddenly jolted, as if responding to falling from a height, my heart rate picked up, I started to drift off again. Except suddenly I was being attacked. Nurses grabbed me, stuff was being stuck to my chest, the doctor was taking blood from my wrist with a tiny needle. It turns out the jerking sensation I had was my heart stopping for 10 seconds or so. LOLCANO. As a reward I had lots of irritating tests for the next 24 hours or so.

The most rewarding test was a CT scan with a special contrast. If you recall, a CT scan is where they put fluid in you that reflects and gives an image of your insides as you slide in and out of a big polo mint. Because an injection is too easy I had a fresh treat in store – a little while before my scan a large plastic jug full of bright pink liquid appeared. I had to ingest it. A litre of it. In an hour. When I had a tube blocking my throat. Medicine is always willing to rain on your parade, though, so the solution was to fill a syringe with 100ml of this stuff every 10 minutes. Then attach it to my nose tube. I was an orange jumpsuit away from Guantanamo Bay. So rather than warm green fluid coming out my nose, I had icy cold pink fluid going up my nose, down my throat and squatting uncomfortably in my stomach. The urge to vomit was strong with this one.

I kept the special sauce in during the procedure even while I was being hefted on and off the scanner bed multiple times – they hadn’t ‘warmed up’ the scanner so I got hauled out a few times. I’m sure my dignity was left intact, and I enjoyed the thought of all the outpatients in reception waiting to have achey shoulders and bunions looked at as I was wheeled past hooked up to life monitors etc. I was tempted to shout ‘it was only an in growing toenail!’….

My parting gift to CCU as I healed up was to let them replace my central line (the one going into a major vein that allowed half a dozen attachments at a time). The giant infant did the job, going, quite literally, for the jugular. The job involved me laying perfectly still, my head craned to the left. He laid one of those big green medical sheets over my head with a hole over my neck and a plastic peep hole for me. Within minutes the plastic fogged up and breathing got difficult. But that’s OK, after the local anaesthetic I could focus on him slicing into my jugular and stuffing a tube in. He sewed me up pretty quickly and I had a nice jangly attachment taped to my neck. It was quite taut so turning left was slow, painful and a challenge. Sadly everyone approached me from the left, which meant I greeted everyone in the manner of a possessed ventriloquists dummy with a painted on rictus grin.

With that, 14 days post-surgery, I was released back to the ward. Average recovery time was around 21 days, but the size of my particular op along with this setback would probably add a week or two to my stay, or so I thought. But this is me, I had 54 more stressful nights in hospital ahead of me….

Coming Soon: Chapter 21 – Mount Vesuvius.

http://www.zazzle.co.uk/tooupbeatforcancer

https://www.justgiving.com/KerryBoardman2014/

Chapter 19 – Complications

In retrospect, I was perhaps foolish to bluster into the normal ward thinking I was strong like Ox. Rarely do things go as planned for me.

Nevertheless, for a man dripping with tubes and unable to stand for more than 5 seconds without crumpling into a heap I was filled with a strange serenity and new-found confidence. The next few days were really a drowsy blur. The NG tube was pretty big and a real struggle. As I would drift off to sleep it would settle against the back of my throat, setting off a gag reflex, and I’d jolt awake like a grandfather at Christmas, woken by his own Brussel Sprout enhanced guff. It left my throat and nose raw and dry and I slept fitfully now and then.

The dryness haunted my dreams. I started obsessing over giant cups of lemonade (the sort you got in cinemas and fast food restaurants) filled with ice, in my dreams I would chug them in one go. Or I would be lying somewhere tropical, cradling a pitcher full of fruit juice and ice. All too often I’d be jolted awake to reality by the scratch of the tube, my tropical paradise replaced by beige walls, tubes, and the bleep of monitoring equipment.

When the surgery looms on the horizon you try to prepare yourself, but as with most events reality is always different from the preparation. Time becomes elastic. You regress into your own head and try to while away the hours in the theatre of your mind. I would picture the gross insult done to my body inside and out, try to view it dispassionately with a clinical perspective. When that didn’t work I’d imagine the incredible repair project taking place in me. Organs swelling. Skin cells knitting together. My body shrinking, refilling the spaces my unwelcome visitor left behind. Kerry was there as much as she could be but talking was incredibly hard and I was 100 miles from home. I foolishly thought I’d done the hard bit but the psychological battle continued furiously.

It’s very hard to avoid prison analogies so I’m not going to try. Propped up in bed, sore and bored, and without meal times to break up the day (remember, I had smelly thick milk feeding me through my veins at the moment) I had to measure the day in other milestones. So I had various boring daily markers to delineate the passing of time.

Every hour or two I’d get the strange nauseating feeling in my stomach that said it was full of brackish gut water, and feebly flag down a passing nurse. They’d hook the syringe up to my nose tube and I’d go crossed eyed (much like a cartoon bear watching a bee land on it’s nose) observing it slowly fill the container and splosh into a jug. The record for slime emptied out of my tummy was 2 litres in one go. It was a magic porridge pot of bile.

Then there was my wound that had to be dressed daily by a squadron of nurses. I’d lose a few more body hairs each time and gaze in astonishment at the dressings and pads and gauze torn from my tummy, shiny with half formed scabs and mucus. As time wore on, I’d get various oohs and aahs from my audience of nurses, one of whom, Elaine, took great delight in jabbing my belly, Pilsbury Dough Boy style, as she watched it shrink. In less than a year I lost 7 stone, a third of my body weight. I’m amazed more people don’t take up Cancer as a weight loss regime.

Then there was my exercise and daily ablutions. The half dozen steps to the chair in my room were a marathon in the early days. I’d haul myself up, nurses either side, ready to catch me, sway a bit and slowly regain balance. Wires dangled from me and most of my arse flapped in the breeze. Balls to modesty, they pulled a big bastard tumour out of me last week, I’ve earned this partial nudity! You give up sense of personal space fairly quickly, during bed washes you simply lay back and stare at the ceiling as you’re scrubbed down, if someone has a name badge and seems to know what they’re doing, they can do what they like! Anyway, I’d shuffle and hobble and stagger to the seat and aim for 15 minutes of sitting upright. After 3-4 minutes I’d start getting short of breath. Shortly thereafter I’d feel as if I were underwater with a great weight bearing down on me. As 15 minutes approached I’d be panting and sweating and leaning precariously. Then I’d have to make the slog back to the bed. It sounds absurd but the strain was immense.

Lastly, but certainly not least, was my stoma and the bag changes. I’m going to talk lots about poo and the digestive system in the next three paragraphs so skip them if this bothers you. You big girl’s blouse. My stoma has filled my world and frustratingly ruled it too so I need to talk about it a great deal. It is necessary to save my life and allow my recovery but it frustrates me all the same. Because it’ll get lots of mentions I’m going to do a bit of medical detail for you. A stoma is an opening. In my case, I have an opening quite high up in my digestive system, which means I have an Ileostomy. If the opening was lower down I’d have a colostomy. Imagine your digestive system is a drainpipe. The top half takes the nutrients out of the food, the bottom half takes the water. The second quarter of my drain had been strangled to death by the tumour and was infected, and had to be removed. The second half was sealed up and left intact. With nothing to do it sat there, redundant. My bum was now out of use. For now, there would be no poo or farts. Yes, it is weird for a bit, but you get used to it.

But the stuff that goes in (food) has to come out somewhere too. So the remaining part of the small bowel gets stretched through the abdomen to stick out somewhere on your tummy. Where it comes out depends on how much healthy bowel you have left and how far the veins and arteries that keep it working will stretch. In my case, I didn’t have a great deal of give. So pretty much where my appendix would have been (just above and across from where my belly button would be, on my right side) is a red oval, like someone has scooped a chunk out of me. Inside that hole lives the bottom part of my small bowel, it looks like a little thumb made of the same material as the inside of your mouth. At random times of the day (or in my case, almost all the time) it will bob in and out like a little turtle peeking out of it’s shell, and spew some poo. Because the next bit of the bowel would normally take out the liquid, the poo is very watery. To catch this, you stick a bag over the hole and the said turtle head poos into the stoma bag. You open the bottom of the bag into the toilet to empty it, clean the outlet and get on your merry way.

Sadly, my stoma was more challenging. By the time week one was over I knew this to be true from not just the pain, but the way nurses winced when changing my bag and commented on how indented it was. Most Ostomates have a few cm of bowel sticking out, the bag covers it and faeces drops happily into the bag. Not so with me. The placement of the hole meant gravity battled my bag as it clung to the curve of my tummy. The length of my bowel meant poo would pool in the opening (partly because I was bed ridden, so gravity couldn’t help), and the bowel separation being so high up meant my poo was particularly watery just to add to the misery. This was a perfect storm that meant for the first 6 weeks or so I was in hell. The pooling of waste and associated stomach acid meant I had an area the size of a saucer on my stomach that was perpetually being burnt with acid. The sensation was of a cigarette being put out on my skin constantly. The constant stream of liquid poo meant the bag struggled to stick and I’d frequently have to endure the humiliation of liquid shit streaming out the sides, flooding my bed as I lay helpless in my own crap. I was a baby again and the nurses were lovely but nothing ground me down more emotionally and physically than the constant battle I had with this endless stream of excoriating, stinking waste. It’s driven me to pain and tears dozens of times and twice the pain has pushed me to the verge of vomiting. If I know you and suddenly disappear or go quiet online out of the blue, most of the time it’s because I’m having a stoma problem, I apologise both retrospectively and in advance. Stoma catalogues are filled with images of couples laughing in restaurants and strolling along the beach, hand in hand. I want to smash their faces in with a shit smeared fist. You get the idea. I’ll scream incoherently about my stoma further in later chapters so it’s time to move on.

I figured I should feel better, not worse, as the week closed out but that was not the case. I started getting more and more achey and breathless until on the Saturday I projectile vomited a significant amount of bile, hosing myself and clipping a nurse too. As I sorrowfully mopped warm swamp water off myself my surgeon dropped by. I semi-burbled a few expletives at him through the scratchy NG tube and the slop dribbling from my nose and mouth. He dashed off looking appalled and to presumably fetch a priest to sort matters out.

I laid there feeling ropey and sorry for myself when Kerry unexpectedly turned up. Any sensible human being would be delighted at their wife making an unannounced 4 hour round trip but no, not I, I behaved like a right shit and starting moaning/sulking. I think my logic was that I’d have seen her the next evening anyway and I was worried about her getting burned out and Ethan not seeing enough of her, but the way I expressed that was to act like a massive bell-end. She may have regretted some of her wedding vows that day as I lay there gurgling and scowling.

Next up to get the pleasure of my charming company were my Mum and oldest brother. Shortly before their visit I did one of my marathon treks to…errrr….the chair next to my bed and very nearly passed out onto the tiny physio who was helping me. She managed to juggle my various bags of bodily waste (picture a shopper laden with bags full of clothes hunting for their keys with half a free hand. But instead the bags are full of wee and blood and mank and the keys are a half witted gentleman swaying, his pallid arse rearing up into view) and corral me back into bed and stick me on an oxygen mask. At which point my family arrive. I’m beyond speech so invent a new sign language called, I believe, ‘bullshit’ and get increasingly aggressive as they struggle to interpret my ridiculous hand gestures.

Unsurprisingly, they leave before long, and I try to sleep.

The following day I’m suddenly awoken in the early hours. Turns out some of the samples they took before (if it can fit in a tube, thy wanted a bit of it. Four times a day. Hadn’t you had enough blood, you monsters?!!!?) came back with signs of serious infection. Which was maybe why I kept trying to kiss the ground and why my heart rate was way over 100. They were concerned, and with that, at 6am, it was back to Critical Care I went…

Coming Soon: Chapter 20 – Hallucinations and Detonations.

http://www.zazzle.co.uk/tooupbeatforcancer

https://www.justgiving.com/KerryBoardman2014/

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Chapter 18 – Big Brother Is Watching

I wanted this blog to be a little different to others that are written ‘diary style’. When I got such a positive reaction to early chapters I thought it would be great to share the perspective of others, and I suggested it to my oldest brother, Lee. I thought at some point I’d get a few lines. Instead I got this fantastic mini essay just days later! As a result some references are old (it was written in April) but it loses none of it’s meaning. I hope you enjoy reading it as much as I did.

This is going to be difficult to write.

Not because it’s difficult to talk about the tough battle my baby brother has had to endure (although that is certainly true), but because my memory is absolutely appalling. I use an app called DayOne on my iPhone, in the hope that I can keep a journal of my life. I started using it on my 40th birthday, as I knew that things were only going to go downhill from then on, but the truth is it’s always been bad. If I don’t use the app for a couple of days, I struggle to remember what the hell I’ve done and there are gaps throughout my journal representing the gaps in my memory. It’s shocking. Anyway, this blog post isn’t about me. My wife could probably write her own blog on me, my awful memory and how frustrating it is for her (and may well do so at some point). This post is about my little brother and my perspective on the last year and a bit of his life. Shall I get on with it then?

Because of my bad memory, I’m struggling to recall specific details – things that were said to me at certain points, details about the latest object being inserted into one of his orifices etc. What I tend to remember more clearly are the thoughts and feelings that I had at specific times, and hopefully I can describe those for you.

I knew that Nick had been suffering from stomach pains for a while. He was trying to cut out certain foods, which wasn’t helping, and eating less wasn’t reducing his weight either. Just one of those things, I thought – he’s always been a big lad, able to do a mean truffle shuffle when he was younger. His weight has gone up and down throughout his life. Plus, bodies change and foods can start having funny effects on you at any time. I’m sure they’ll get to the bottom (no pun intended) of it eventually I thought…

I remember getting the text to say that he was in A&E. I was at work, and it went along the lines of ‘fainted at work, I’m in A&E, nothing to worry about’. I was obviously worried, but Nick has always been able to downplay his condition to avoid panic and stress for everyone else. As time went on, this obviously became harder to do, but he’s certainly tried!

One of the main reasons for trying to downplay things and avoid concern was probably because, at the time of his diagnosis, it had not yet been two years since my wife had lost her own brother. Pretty much the same age as Nick, and with a wife and two children, he’d developed a heart condition, which had affected his quality of life, but he certainly wasn’t dying. One day, following a few days in hospital, I got an unexpected call at work from my mother in-law, telling me that he wasn’t going to make it and that I should get home quick to be with my wife, who was looking after his kids and our own kids. I couldn’t believe what I was hearing, as less than a week ago we’d been at his house for his daughters birthday party. It just didn’t seem real. However, less than a few hours later, he was gone. The devastation that caused was obviously immense and continues to affect us all in different ways and at different times. I’m sure Nick had all of this in mind, and was trying to spare us from thinking that history was going to repeat itself. He didn’t need to do that.

Nick’s stay in hospital following his collapse at work was one of many times to come where tests and procedures were carried out and answers given which later turned out to be incorrect. That whole week is a blur to me. I remember taking our mum to visit him early on in the week, but that’s it. Reading his blog post about this stay in hospital, it was obviously horrendous. I’m amazed now, that after all the time he was there, the upshot of all of it was that he had some scarring to the lining of his tummy and this was causing bleeding. Something like that anyway. As you know, my memory is awful. It seemed like a reasonable explanation though, something that could be sorted, so I probably just moved on and didn’t think about it too much.

I don’t remember much of the next few weeks. My wife and I had won a holiday to go back to the hotel in Cyprus where we got married (just us, no kids, woo-hoo!!) and during this time in May, there were more tests and consultations going on. I was keen to find out how Nick was getting on while we were away but not wanting to spoil my holiday, he was pretty vague with the details. Soon after we returned home, we got the news that it was bowel cancer. Again though, he continued to downplay the severity of it all.

Nick, Kerry and Ethan came to our house for lunch on Nick’s 33rd birthday, 26th May 2013. It was one of only two times during all of his problems that he looked seriously ill enough to really have me worried. He was pale, weak and tired and sat in a comfy chair in the garden watching our children play together. He ate Heinz spaghetti hoops while the rest of us ate bacon sandwiches; plain sponge cupcakes while we ate chocolate birthday cake. My mum was there too and I suddenly appreciated the importance of family and us all being together. I also dreaded the thought of going through the same thing my wife had been through with her brother – the painful loss of a brother, a son, a husband, an uncle and a father.

The next few months, Nick was going through his chemotherapy treatment. Miraculously, every time I saw him he looked normal. He looked tired, but he certainly didn’t seem unwell. The chemotherapy seemed to be working, so that was good – he’d be more than ready for this nasty operation that had been spoken about, but was too far away to be of any concern right now. In the middle of his chemo treatment, we all had an amazing mini break together in a Forest Holidays lodge. Another one of those times when it felt good to have most of the family together.

2013 went too quickly for me really. Before I knew it, Christmas was upon us. Chemotherapy treatment had come to an end, his tumour was reducing, and preparations were being made for ‘the mother of all operations’. Nick, Kerry and Ethan came to our house for Boxing Day dinner, as did my mum and nan. Another one of those wonderful family moments. Nick still seemed ok – although part of him wanted to hit the operation head on as soon as possible, he must have been dreading it too. He’s said many times that you just have to get on with things as you have no other choice. I’m sure that’s true, but I really don’t think I would have been as upbeat as he was throughout 2013. He’s amazing in that respect. His skills at ‘Word Monsters’, and games in general, compared to me, leaves a lot to be desired, but his bravery certainly doesn’t.

Before long, it was time for the big operation. My wife Sharon had offered to go down and stay with Kerry in the Basingstoke hotel, close to where Nick was having his op so that she could be there during that ‘limbo’ period when he was on the operating table. I don’t think I would have been very good to have there, so I was glad Sharon could be. My wife is also amazing.

I was off work on the day of the op. My daughter Katie had been awarded star of the week at school and I went to her presentation assembly in the afternoon, still not knowing how things had progressed with the operation. My mum came with me and we were both worried. As my daughter came out of school, our first update came through on text. It was a long message, full of detail, and it didn’t sound positive. A 5kg tumour, body parts removed, body parts damaged, maybe not completely successful, further treatment probably needed. As my daughter excitedly greeted us, my mum and I struggled to digest and understand everything. It wasn’t until the evening, at the end of the operation, that we got a bit more detail, and things turned out not to be as bad as we’d first thought. However, the extent of what my brother had been through was incredible, and I wondered how he would be when he woke up.

The day after his operation, my brother posted a selfie on Facebook…

This was brilliant. After all that he’s been through, he’s right back on Facebook, performing for his audience like the monkey he is. Although he still had a long way to go, this was hopefully a positive start. Anyway, I was due to travel down with our mum on the following Sunday, so hopefully he’d be feeling even better by the time I saw him.

Seeing him in his hospital bed on the Sunday was the second time that I’ve seen him looking so unwell that it really upset me. He was barely conscious, with tubes going in and out of his body. He acknowledged us as we walked in, but was unable to speak properly. Instead, he began making an open and close movement with his hand, like he was operating Kermit the Frog, followed by a point towards the door. He did this a few times before we realised that he wanted us to talk to the nurses for an update. They told us that he’d had a rough few days and now had a mild fever, which had dehydrated him. We went back into his room and sat there while he fell asleep but about 15 minutes later we were moved to the day room while a nurse checked his catheter. Up until now, I had been worried about how my mum would be when she saw her baby boy for the first time but there she was, seemingly OK, tapping away on her phone. Instead it was me that suddenly felt like I was falling apart and I started filling up. He’d done such a good job of keeping the bad side of his condition and treatment away from me, but now he was powerless to do anything. It hurt to see my brother like that.

Over the next 2 months of his stay in hospital, I only got to visit Nick on 2 occasions – once on my own, and then another time I travelled down with my mum, Kerry and Ethan. Each time he looked much better than before, although he was still continuing to baffle doctors with various issues that were affecting him and his recovery. Once again, he’d had numerous tests and procedures and was becoming increasingly disheartened. Although he was in much better hands than his previous stays in NHS hospitals, he needed to get out of there. Being at home amongst his family was going to be the best possible medicine for him now.

Thankfully, he is now home. I saw him last Tuesday, after being back home for 4 days, and after a dodgy first weekend. He looked so much better than when I last saw him though and it was good to be able to finally talk to him and Kerry in the relaxed atmosphere of home.

There is still a long way for him to go, with more treatment and operations to come. We’ve also got another family weekend planned later in the year. I’m hoping though that the worst is behind him. Although I don’t see enough of my brother as I’d like to, I love him very much, and I hope he’s around for many more years to come…

Chapter 17 – Critical Care

It may never have happened to you but there’s a strange sensation sometimes when the outside world seeps into your subconscious as you sleep – songs on the radio; noises your partner makes; birdsong. For what seemed like an eternity I was vaguely aware of beeps around me. Hands gently moving me. Discomfort in my throat. A general bustling. Apparently I kept trying to wake up at the sound of Kerry’s voice at my bedside, they kept having to drug me again.

Then, suddenly, rudely, as if being dragged to the surface of a lake I’d been submerged in, I was pulled back to consciousness. It was 24 hours later. My worst nightmare was happening – I had a tube the size of a Siberian oil pipeline down my throat helping me breathe. The doctor beside me tried to introduce himself but I just frantically pointed at my throat like the village idiot in a pantomime, desperately trying not to panic. He told me it needed to stay in a while longer. I flapped the other arm, attempting flight. He relented.

The ocean of anaesthesia meant I calmly observed my new circumstance. But there was only one real thought. I’m alive. I’ve done the hard bit. I’m still here.

I was naive.

My first question was ‘did it work?’ The response was what I’d been waiting for. The surgery was successful. To me, not much else mattered.

I was in a moderately sized room full of monitors, a window to my left displaying a gloomy and wet Tuesday morning. In front of me was the sort of big slanted desk architects and artists used. My nurses used an enormous sheet of paper to record everything on an hourly basis. I couldn’t really turn right – I had a jumble of tubes streaming from my collar bone, jangling. I had no pain but I ached terribly and felt winded.

My nose was sore – I had a tube going up my right nostril and down my throat. It scratched and frightened me. The tape sticking it to my nose was uncomfortable. I hated it immediately. I wasn’t really aware of much else. I could feel something stuck to my tummy, could see three tubes snaking out from my abdomen. Moving further down things were strapped to both legs. On my feet were these weird Velcro boots that puffed up and down with air every 15 seconds or so. To round off what would make a really crap fancy dress outfit was a blood pressure cuff and a thing on my finger taking my pulse. I was hot, tired and relieved. I wanted Kerry to know I was OK.

After about an hour she was allowed in. She may have looked drained but seeing her again was pretty much the most beautiful sight I’d seen since she walked down the aisle on our wedding day. For reasons I’ll never understand she was pulling a face like I’d been causing mischief. She told me how widespread the tumour had been and that it weighed 6kg. I found this both impressive and hilarious. She told me there had been a lot of involvement from a urological perspective. I took a moment to confirm my meat and two veg were intact. They were but a tube came out of there. I tried not to think about it.

My consultants dropped by to check on me and fill out some detail but shielded me from the grim reality of how desperate my situation had been. The urologist who hacked away chunks of my bladder, prostate and ureter came and said hi. I was rather dazed, and also surprised to find I could move a bit, adjust my body a few inches round the bed.

I slept a great deal that day. I think I deserved it. Kerry sat beside me, chatting away, crocheting at the speed of light. The tube down my throat made me parched and sore, so I didn’t really speak. I was given little sponge lolly pops on sticks to soak in water and suck. I named the tube (an NG- nasogastric tube) ‘Corden’ because it was insufferable and I wanted it to go away forever.

You know the first day at school or a new job is nerve-wracking but really you do bugger all, right? And then day two you realise it isn’t all introductions and tours and forms and you have to get to work? Same with surgery.

First things first, let the world know I’m OK, and draw some strength from the kindness of my Facebook friends – look at this handsome devil, fresh off the table.

Next up, a bit of drainage. My stomach hadn’t been used for about 80 hours now but the bile and acid didn’t know that. Something weird lurked in my guts. Out came a large syringe which they attached to my NG tube and pulled on. Alarmingly, about a litre of greeny-black pond water came up my throat, down my nose and into the syringe. It stank and was rather alarming. I produced about a litre of this stuff every few hours for 2 weeks. It was an odd mixture of satisfaction and body horror. Instead of eating I got a carrier bag of milk containing all the necessary nutrients for life hooked up to one of my tubes in my neck. It smelt of dog food.

I now did my poo out of a hole in my tummy into a bag. Because I was only digesting liquid the bag would inflate with the same pond water and need emptying a few times a day. It’s called a stoma and I’ll be talking about that bloody thing a great deal more.

My dressings and my stoma bag needed changing daily, but I was too tired and nervous to look other than at the top few inches of my surgery wound, which was a fairly neat, bloody zipper with decidedly industrial looking staples at regular intervals. It was sore but the main pain was the sticky dressings tearing all the hairs off my body.

Along with the bag emptying, dressing changing and blood pressure taking came the physiotherapy. The bastards don’t let you rest. Three times a day they saunter in to torture you in the name of not letting you get pneumonia or some bollocks. So I wiggled my legs and did breathing exercises into a breathalyser with a smiley face. It was tiring. Everything was tiring. But through it all I had Kerry beside me, churning out baby blankets and chatting away.

I continued to sleep and had an alarmingly detailed dream about the Justice League of America while I had a blood transfusion. The nurses were delighted by my progress and I found I could shuffle myself about in bed with very little pain to the point where they decided to detach my self-administered morphine pump. I was the Man of Steel and after three days of care and constant monitoring the medical team decided I could go back to the main ward to recover. Things were on track and I was delighted to see the back of the Critical Care Unit and be on the road to recovery.

Oh, but I forget. This is me. Three days later they were rushing me back for a much longer stay.

Coming Soon: Chapter 18 – Big Brother Is Watching

Appendix Appendix Part 1

11.22am. Boardman hauls his creaking frame out of the hospital bed, a bag of his own piss under each arm. He shuffles into the bathroom, forgetting the benefit of a walk-in shower is offset by the uneven flooring. His screams of horror slowly fade away with a few more precious shreds of dignity….

Minutes later he dries his face with a towel whose peculiar odour suggests the previous occupant of his room was fastidious when it came to genital hygiene….

Welcome to my appendix appendix. You’ll note a bit of a delay in posting on here. That’s because I’m dicking about in hospital again! I should have known, my usual zeal for posting had been waning of late, and I’ve been sleeping more during the day. Turns out my kidneys had given up for a bit and my body was slowly filling with toxins. This is day six in hospital, so as a stop gap consider this little detour an apology for the hold up between chapters. I’ve been making some observations during my stay and thought I’d share them….

– it’s possible to get some sleep while an old man sings ‘Three Coins in a Fountain’ for 3 solid hours before impersonating a cockerel at an alarmingly accurate time of day.

– The food hasn’t improved. Check out the hashtag #shitdinnersoninstagram for proof. The password is ‘sorrow’.

– Once four doctors have said ‘tell me again why you were treated with appendicitis in Basildon?’ you’re legally entitled to give them a Chinese burn.

– There are better ways of finding out you’re getting a tube rammed into your kidney than hearing a nurse mention it casually to a Dr at the foot of your bed.

-There’s nothing more alarming than a nurse peering round your door and whispering ‘I know you….I know your face….!’

– Actually, there is, it’s a nurse saying ‘you’ll have to wait for your injection. We’ve run out of needles’.

– Actually, that’s not it, it’s a surgeon shouting ‘this is wrong. Where’s the wire gone?! Why can’t I see the wire?!!?? After putting a wire directly into your left kidney.

– There’s nothing funnier/depressing/more infuriating than a heroin addict self discharging with an empty buggy and a Thomas the Tank Engine towel, but not before losing a sock and a shoe out the window (don’t ask).

– it’s surprisingly refreshing and pleasing to feel your own warm urine suddenly dribbling down your back.

So there you have it. My thrilling week. I’ve got a temporary nephrostomy that is allowing my kidneys to filter the bad stuff out of my wee while a blockage in my urinary system clears. They’ll be putting a tube in my left ureter soon to allow my waterworks to function normally and get me back on the road to recovery. For those whom this makes sense to, I was admitted with a Potassium level of 7, Creatinine of 1266 and EGFR of 4. They tell me this is bad.

See you soon, fans of misery and effluvium! While you wait, maybe swing by this here link too….

https://www.justgiving.com/KerryBoardman2014/

Chapter 16, Part 2 – Mrs Nicky and the wait.

Sorry to have kept you waiting for this next bit…. Horrid isn’t it….waiting….

As any of my friends will tell you, I am particularly bad at waiting. But wait I must, for the duration of Nicky’s op. All 12 hours of it.

We said our “see you laters”, refusing to say “goodbye”, and I put Nicky’s wedding ring on a chain around my neck, where it would remain, as my talisman, for the next 10 weeks. Nicky had been thoughtful enough to arrange for my sister-in-law to be with me, so that I was not pacing on my own. Thanks Sharon!

We sat for a while, had a cup of tea (well, that’s what us Brits do in times of stress!), got word that he was successfully in theatre and then decided that it would do us no good at all to loiter in the hospital for hours on end. So we did what most pairs of girls with some free time do… went shopping. Aside from me obsessively checking my phone every half hour or so, to make sure I still had a signal in case the hospital needed to get hold of me, it was a pleasant enough morning.

The consultant had promised that he would phone me with an update about half-way through, which they were anticipating would be around midday to 1pm, so we made our way back to our hotel room to await the call. That was when I really got fidgety, either pacing or trying to calm myself with crochet. It didn’t work…I think there was smoke coming off my crochet hook, I was going that fast (one advantage of this whole saga is that I have churned out loads of crocheted items!)

12pm came and went

That’s ok – they said it might be later

1pm came and went

Hope it’s all ok

2pm came and went

What’s gone wrong?

3pm came and with it, the call I had been on tenterhooks for… the news was mixed. The cancer was far more extensive than they had realized (in some respects, I will forever be grateful for this fact, as they admitted afterwards that they probably wouldn’t have operated had they known just how bad it was!) They had managed to remove a 6kg tumour mass, but it was tangled around a number of organs. They had called in urologists to help repair the bits of urinary tract that they had to remove in order to get Clarkson out. There was talk of removing Nicky’s bladder, but they thought they could get away without doing so. Things were still pretty hairy. The surgeon sounded tired. I finished the call, updated Sharon and burst into tears. Suddenly, the massive reality of it all hit home in a way it hadn’t done previously. There was still a chance that Nicky might not actually make it through, and he would potentially be a lot more disabled than we previously thought.

Through all this, Sharon was an absolute star, plying me with snacks and chocolate, chatting about anything and everything to distract me, and allowing me to cry when I needed to. We have always got on well, but in that time she became, and remains, my second sister.

Finally, at about 8pm, the operation was nearly finished and the surgeon came to speak to us while Nicky was being closed up and taken to ITU. He looked so, so tired. I wanted to find him a cup of tea and a good meal! The news was better than earlier – they had got all the visible tumour out and we would shortly be able to go and see him. I thanked him and nagged him to go home to recover.

Having worked in hospitals and seen patients on ITU, I was expecting a pretty scary sight, but actually Nicky looked remarkably like his normal self and quite peaceful, albeit with lots of wires, tubes and monitors. For the first time that day, I properly exhaled and relaxed. We were by no means out of the woods yet, but we had made it through the operation and I still had a husband.