Dear Ellie-May...Again

Dear Ellie-May,

When I last wrote, I ended with you leaving hospital but hinting at more to come. So, here’s a letter to remind you of the next hurdle you overcame.

With mum in the driver’s seat, you headed on the open road back to your childhood home: a bonus 6 week period up ahead, signed off work, to enjoy a place that will soon become another family's playground to build memories as they grow (but that’s another story). First there was mum’s birthday, a celebration with family, perhaps enjoyed too much as you retreated to the sofa in the mid-afternoon to rest and receive visitors, some baring the delicious beauty of chocolate tiffin, others the simple joy of company and conversation.  

A pretty dress and putting on some make-up
for the first time since pre-surgery

The week was filled with visits from family friends, cups of tea, delicious home-cooked food and early evenings spent sat on the lawn watching the colours change as the day drew in. You read, crafted and coloured and found admin slots to claim on insurance and seek heart specialist appointments (high heart rate, blah blah blah). Every other day, the local GP surgery where you’d grown up welcomed you with their kind smiles and sympathetic eyes, to inspect your wound, change your dressing and discuss your worries. You laugh quietly to yourself remembering the nurse at the hospital who reassured you “you won’t need to see your GP for dressing changes, you can just do it yourself for 2 weeks”. Now 5 weeks later and, until 2 days ago, removing your dressing entirely was not an option. The wound has been tricky, the healing complicated. Your scar almost resembles an exclamation mark, a straight line following the scar that already existed, but finishing at the bottom with more of a full-stop…a circle that has gradually shrunk in diameter but will always look that slightly bit different. You’re still not able to consider swimming or even, god forbid, have a bath. It’s only in the last week or so that you’ve ventured into the shower, progressing just that little bit from sitting on the outside of the bath, your hair draped back for mum to wash it. Perhaps later today, you’ll remind yourself what it’s like for water to wash over your tummy, the skin exposed to the elements, no longer hidden behind its protective gauze barrier.

A completed craft project:
a Bookmark for mums birthday

Anyway, I deflect. The point is, that minus the healing pain and the exhaustion, you were moving forwards, the direction one usually hopes to travel in life. Then things changed. Monday 27^th June, 11 days post-discharge, you began to feel something different. You’d been used to the pain the wound carried, and some sharp internal stabs which you continue to put down to internal healing…but this was different. It was both unfamiliar and familiar at the same time. Cramping. Struggling to stand up straight. Bending over just a little. You felt off, but not off enough to retreat to a horizontal position and stop eating or drinking. You ate a little supper. You watched tv. You went to bed. Two hours after falling asleep, around about midnight, you awoke with very familiar pain. Blockage pain. It wasn’t the worst you’d ever had, but it certainly wasn’t nothing. It was you, twisting and turning in bed trying to get comfy as every few minutes your stomach gurgled and spasmed, the pain radiating to your back. It was: trying to doze even as nausea sat on your chest. At 5am, after several failed attempts, the nausea was somewhat relieved…need I say more. After hours of contemplating whether the situation was bad enough to disturb our parents slumber, you hobbled semi-hunched, to their room. From there, things moved a bit more smoothly.

Considering briefly your options: waiting it out for a few hours, going to the local hospital, driving back to London…you decided on the latter. As you lay, activity buzzed around you; mum packed bags, for you and for her, dad, downstairs, readied his chauffer hat. A few false starts later, and you were on the road. It wasn’t yet 7am and you were on the motorway, pillows protecting your tummy, a bowl beside you. Google maps predicted 2 hours…possibly more. It felt like an eternity.

When you arrived, however, things seemed to speed up. You were able to find a chair while mum explained who your were to the stranger behind the glass. Mum mentioned your recent surgery and the doctors parting words that we should return with any concerns. Less than 5 minutes from walking in the door and you were being triaged, the surgical team were being called and, as mum kept reassuring you “you’re where you need to be now”. Unlike last time at least, no-one dared tell mum she had to leave. You sat shivering on the plastic chair while internally laughing as the triage nurse picked up the phone and described her concern over your tachycardia…been there, done that. De ja vu.

A familiar look - nasal-gastric tube, face mask and headache cool-pad

The surgical team didn’t feel the need to rush and see you, they wanted A&E to asses things first. You already knew the day was going to be long. You could only be grateful it was day and not night. There’s something far worse about the hours of waiting, not being able to sleep, counting down until dawn. You were quickly moved to a trolley (I would call it a bed, but they don’t come with pillows or with the fun remote control that the ones on the wards do). Only patients beyond this point, so it was “bye bye” to mum…tears brimmed as you watched her part the curtain and head for the exit. You were moved right to the end of the department, in a space with 2 other beds, tucked around a corner from the staff desk. It took a while but you were eventually hooked up to pain relief, nausea medication and fluids, familiar steps in the process. The male nurse in charge managed to make you laugh more than once, a miracle in the circumstances. He apologised profusely when at one point you were abandoned without access to the little bell button required to call for help. He even found you a pillow (“shh, don’t tell”).

“Eleanor Russell for CT”

You heard the robotic voice echo and were filled with confidence that things were moving much faster than usual. You were even allowed to stay on the bed as a kind porter transported you through the department, past police guarded doors (curiouser and curiouser), to the imaging corridor. Just one other patient sat waiting, You breathed a sigh of relief, knowing the 20 minute wait you’d had that first admission was clearly not an issue this time. Ha. Over an hour later, sobbing with frustration, your back to the door to the CT scanning room, you still waited. As other patients behind you arrived, waited 5 minutes, were called, and left. As the door to the room opened and closed, the warning lights flashed on and off, as the robotic voice from inside repeated over and over “breathe in and hold your breathe. Breathe normally”. Twice, someone came to your tearful side and explained they were still waiting for instruction from my doctors, or “there’s other people waiting, you just can’t see them”. Finally, your turn. Almost 90 minutes had passed. Within 5 more you were in and out of the machine, the sensation of having wet yourself a familiar one by now as the dye seeped through your body. You didn’t even have to wait for the result, as the radiographer reappeared to detach you and stated:

“No wonder you’re in pain. You’ve got a blockage again”.

Not long after this, back in A&E, some familiar faces appear around the curtain: The kind face of Saxon, one of the doctors, and her senior, a lovely pregnant lady who’d been responsible for getting you on the morphine pump only weeks before (lets call her Dr. B, B for baby). Their sympathetic eyes and words of “We’re so sorry you’re back here” were all you needed for the tears to come again. Their news wasn’t bad though. It’s just a partial blockage. No twists this time. No closed loop. “We will need to put a nasal-gastric tube down, and give you some medicine to try and unblock it though”. You were so relieved that none of that mattered. The tube was inevitable. And, last time, the medicine hadn’t even been an option. Bring it on. Along came your new favourite nurse. In one go, he got the tube down. Don’t get me wrong, I hate it with every fibre of my being, but when we work as a team and successfully insert it first time round, it’s a pretty proud moment.

“Oh, I was meant to use the bigger size tube”

“what?"

“no, no. It’s ok. We’ll leave it for now and see what the doctors say”

A little while later, de ja vu struck again. Saxon and Dr B reappeared. They tested the tube and confirmed your nightmare: “you need the bigger one I’m afraid”. Kindly, they said it didn’t need doing immediately and they’d give you time to compose yourself, to breathe and someone would do it later. Later came, after changeover, and another nurse took 2 attempts to get it down. Even more unpleasant than the last, the tube wider, the sensation worse. Only an x-ray could reassure her (and therefore you) it was where it needed to be. At least the wait for this scan was non-existent. The tube was in, the positioning fine, just a wiggle here and there. The medication was given late at night, a disgusting drink that reminds you of bonjela. As Tuesday night turned to Wednesday morning, you were moved back to the familiar confines of the ward you’d spent 11 days on, a familiar nurse appearing in the half light of the men’s bay (no space elsewhere) to re-canulate you before your least favourite drip, potassium, was connected up to your body.

The bigger tube is in...

What followed over the next week was both better and far worse than the days spent recovering from being cut open down the middle. It was better because the medical situation wasn't as serious. The tube was doing its job of clearing the blockage, the pain relief was effective, the doctors visits were, largely, reassuring. I say largely because, although in the moment things were fine, the particular doctor in charge of you (no longer Dr B. may I add) liked to look ahead. He would start by showing you the scans of your tummy, explaining, with a slight smile, that what you were seeing was good. Yet by the end, he would have explained that, should things not progress further, and should you still be unable to eat or drink by the following week, then surgery may be on the cards. He spoke of the unwillingness surgeons have to operate so soon in succession and the risks attached. Then he moved on from surgery and talked of parenteral nutrition – a necessity in the event that you reach a week without eating or drinking. You would be hooked up to some form of intravenous nutrition, either via another nasal tube (that would be one per nostril…) or via the veins. Both of these futures gave you nightmares. All this to say, while all these horror stories were verbalised, the reality, in the moment, was good and things were progressing well.

Gloomy with the state of my world
as you consistently sweated off the tape that stuck the tube to your face

The “far worse” part of this admission wasn’t really physical at all (the back pain, and bed discomfort equally as frustrating and painful as before however). No, instead, the problems arose from your mental health. With every admission into hospital, you end up somehow off your anxiety medication. This tends to occur because you are instructed not to eat or drink and you have to disclose the pills you require daily for your brain to work. The box of dopamine boosters is required to be put to the side and doled out by some medical professional who, more often than not, hasn’t even heard of that particular brand of pills. In fact, this time, aware of this, you’d intentionally not disclosed the box that sat in your backpack. You figured this meant you were in control. Except, you were also still highly aware that you couldn’t consume anything orally and therefore didn’t feel confident that you could take them at all. So you didn’t…1 day passed. 2 days passed. Your head felt foggy and dark. You were incredibly low. You wanted to be put to sleep until it was all over. You were scared.

Attempting to quell the shivering with your blanket from home
only to find it was too hot for that

Finally, you asked the question and were told that you should be able to take them. So you did. 60mg – that’s 2/3 of your usual dose. Within 20 minutes, mum and Steve held your hand and stroked you as you shook uncontrollably, your teeth chattering. You weren’t cold. You needed help and you wanted it to stop. Mum asked a kind stranger with a lanyard, walking the ward, if she could see someone from the mental health team. This kind stranger, a dietician, as it happens, was reassuring and within half an hour, a doctor appeared. She crouched down and asked you to explain how you felt. She reassured you that someone would come by in the morning. You would get help. They were going to help you. For now, you were told, take the pills but take less. You’d been off them a while and perhaps the jump was just too big for your brain to land comfortably. Start small.

The next morning, after your daily visit from the future-focused doctor man, 2 unfamiliar faces poked their heads around the curtain. A lady and a man, notebook in hand, heads tilted in that way of saying “tell me your woes. I’m here to help”. You blurted everything out and was reassured by comforting sounds and words. It was understandable you felt trapped, you were hooked up to all sorts of places and physically you were restricted. What could they do to help you? You explained about the Dr. Future and the anxiety his forward-thinking provokes. You asked again about the pills. They left and you felt slightly more seen. More heard.

From there, things improved: your head started to feel less foggy. Your tummy gradually unblocked. You followed instructions from the weekend consultant and walked 1 hour a day, 5 minutes every hour. The nurses became used to you pottering up and down, past the desk, between the window overlooking the hospital entrance, and the double doors at the other end. They’d smile: “another walk?”. Thumbs up from the jolly-faced surgical consultant, pleased to see you were on the move.

Saturday 2^nd July, day 5 of admission, and the good news really started. If nothing comes out of your tube by the end of the day, they’ll take it out! Never have you wished so much for something…or more accurately, for nothing. You were determined that nothing would come out of that tube. That day dragged…every half an hour you checked to see how much time had passed and calculated how much longer until the 8 hour timer the doctors had set would be up. Finally, you spotted Dr. B. Around 5pm, she popped in to visit the lovely lady lying opposite, and as she came to wash her hands, her departure imminent, you caught her eye.

“Shall we look at removing that tube then?”

Freedom!

Finally, you could drink comfortably without a straw. Finally, you could try eating little bits of ice cream and soup. Finally, you could sleep more comfortably, able to lie on your side without feeling the tugging sensation down your throat. Finally, finally.

You were told to take it very slowly with food. Dr. B. said low fibre for a week or so, no bread, no meat. The nutritionist gave you a list. Meat has no fibre. White bread is fine. Confusing. Sunday came and went with soup for lunch and supper, back to declining pain relief. Monday came and discharge was in sight…when mum arrived at 2pm, it was simply a waiting game.

"soft diet" - whatever that means...

You were finally free.

Since then it’s been a bit of a rollercoaster. You’ve been much more nervous. More…trepidatious. Nervous about eating and being very careful about trying new – by which I mean, old standard meat and vegetables you once ate without a second thought – things. Meanwhile, anxiety-wise, you’ve never been better…well, for a while that is. Despite being on 60mg less medication than before going into hospital, your heart rate has settled, and you’re suffering far less from the daily butterflies you had been before. For now, you’ve cancelled the heart specialist. Back at the GP, you left your last appointment with the nurse exclaiming how impressed she was with the progress of your scar – and that’s despite the poor wound care you receive in hospital, the lack of appropriate bandages. You’re bending over now without thinking about it and yesterday you ran (in as much as you do this faster pace of walking) up the drive.

Ironically: lower the dose of anxiety medication
and your heart rate normalises...

Next week you aim to start back at work, a week later than first planned, but not a week too soon. The last month and a half, almost 2, have been such a whirlwind. Emergency surgery, a triple bowel twist and a blockage, (very) slow healing, lots of sleep, lots of sitting, your brain all over the place. But finally, now, you feel ready. You know going back to London life, working 40 hours a week, 10 hours a day, is going to be a shock. You know you may need to be more patient with yourself than you normally are but…let’s give it a go.

2 days after discharge, mum arranged a spa afternoon:
hair wash and blow-dry, facial and pedicure

The countdown to, some semblance of, normality begins.

Be kind to yourself,

Yours,