My final few days in hospital are a bit of a blur, as are my first few days at home so this post is a bit of everything. I’ve tried to separate it into days as best I can but the memories are all mixed into one, so that’s why I’ve decided to combine days. As a result, this will be a bit of a lengthy post as I don’t quite know how to separate it all out, sorry in advance!
My last few days in hospital was a bit touch and go as to whether they’d actually discharge me. I’d found that lump, and no one knew what it was, but it just vanished as quickly as it appeared. When I told my surgeon about it when he did his morning rounds, he and the nurse said it sounded like a collection of fluid, however they wanted to do a CT scan though just to confirm what they thought, and to also check the lump I had on my tummy around my stoma that was causing me shooting pains.
One morning though, I woke up and it felt like I’d wet myself. I’d messed myself a couple of nights previously so I wouldn’t have been surprised if I had wet myself in the night, as embarrassing as it would have been, again. I was in a puddle of some sort of fluid (but it didn’t smell like urine), and the lump had mysteriously gone. That’s when my consultant and the laparoscopic nurse came to the conclusion it was just a collection of fluid that hadn’t been able to leave my body, and as I was walking around, the fluid moved towards the ground thanks to gravity. Kind of gross, but by this point I’d had so much done to me and been told so much, nothing grossed me out anymore!
On the 7th December, in the morning I had this horrible dizzy spell. I woke up and felt like I needed to be sick so I grabbed one of the trusty cardboard bowls that went literally everywhere with me and just sat hoping it would pass. Then the world started spinning and I could feel my eyes rolling into the back of my head. I was scared so I rang the buzzer for the nurse and she came to check on me. She wasn’t sure what was going on so got someone to get an ECG machine as she didn’t want to leave me.
She hooked me up and everything was fine, but I was really cold, yet sweating. I couldn’t focus on anything properly and could barely speak. It’s a good job I was just laying in bed otherwise I probably would have fallen over and done myself some serious damage – but at least I would have been in the right place!
That episode lasted for about 20 minutes, they don’t know what caused it, they just gave me some dihydrocodeine and cyclizine which knocked me out and I fell back to sleep – it scared me though, especially as they didn’t know what caused it. But this point I was very inquisitive about everything they were giving me. I’d had nurses try to give me meds I wasn’t taking any more, meds that weren’t even prescribed to me, and some nurses didn’t even seem bothered by the fact a really important drug entering my system through IV was actually just in a puddle on the floor. That night, my favourite nurses on Langham (I had three) were all off and I had an agency nurse looking after me. The drug in question was cyclosporin (bag 7 of 12), and it was the difference between me needing surgery and not, so I wasn’t best please to find my 8 hour infusion dripping on the floor. Even less so when the nurse simply put a towel down to mop it up… Not really the most ideal thing to be wrapped round the wheels of your drip stand when you need to make toilet dashes every half an hour or so! After those incidents, I asked about absolutely everything, so when they couldn’t tell me what it was that was caused me to feel like that, it put me on edge.
Every day from the day I was admitted to the day I was discharged I had to have at least one blood test a day. By the time I was nearly discharged my veins had just about given up on me and the doctors had to resort to taking blood from my arteries which left the biggest bruises imaginable! This was especially fun when my blood had clotted by the time it got to the lab, so the doctor and to come back for attempt number two and run it down straight after herself to make sure it got there as soon as possible!
I was still having my inflammation markers checked, along with my electrolyte levels. My potassium levels had been a concern since before surgery and I was eating two or three bananas a day as they’re high in potassium in a bid to boost my levels and avoid the dreaded supplement they’d mentioned to me numerous times.
A couple of days before I was discharged, my potassium levels had become so low that I had to have the dreaded medicine that everyone had told me about. The first time the nurse gave it to me I was nearly sick – it was vile. But eventually I found the best way to take it was to put it in some undiluted juice and just shot it. It smelt like sambuca, but tasted completely different, absolutely terrible! I had to take this three times a day for a week. I hated it.
Turns out, I was also deficient in something else because I was given another liquid supplement to take. That too was vile, but no one had told me what it was. I went to empty my stoma one evening before bed, came back and found a cup of water on my table along with my tablets. I took the tablets and sniffed what was in the plastic cup and it smelt funny. I took a sip and it tasted funny so I just poured it down the drain. The only way I can describe how it tasted was salty, but fizzy? It reminded me of the sweets Refreshers and how they fizz as they dissolve in your mouth. Well, this mystery liquid did exactly that as it went all the way down my throat. No one told me what it was or that I had to take it so I tipped it down my sink every morning and night. I’d asked the nurses what it was, but they couldn’t tell me either because they didn’t know what I was talking about. I looked on my drug chart one day, but that didn’t give me any clues either! I must have tipped it away about five days in a row? To this day, as I’m writing this in April, I still have no idea what was in – I just know I was meant to have been taking it because Mr Tutton wasn’t impressed when he found out I’d been tipping whatever it was away… Oops?
I was told that your taste buds can change and if you don’t like the taste of something then it can be your body telling you it’s a trigger food – this happened to me a couple of weeks earlier with a cheese sandwich (I still can’t eat them without wanting to be sick) so I just assumed it was the same with the water, apparently not though!
I was finally discharged from hospital on December 8th, after a grand total of 26 days spent in 6 different wards. I remember crying all day, from the time they told me I could go home at 0940, to the time they finally gave me my discharge letter at 1630, even as I WALKED out of the ward, down the corridor, past the physios and in the car all the way home. I was convinced I was going to spend Christmas in hospital and was so happy when they said I could go. I don’t think I’ve ever been so happy in my life, and for once, as I’m typing this, it’s happy tears that are falling, not sad tears.
The picture to the left is of me and my younger sister Lauren. I’d walked from my bed in Mersea Ward, along to the lift and down to the gorund floor before my legs gave up on me and I needed a wheelchair. I was piled up like a pack horse with my medication and all my belongings, my moon face was in full swing and I hadn’t washed my hair in six weeks but I’d finally stopped crying just long enough to take a quick selfie to celebrate my escape from the general.
Before they could officially give me my discharge letter though I had to prove that I could inject myself. From the day I was admitted I was having daily injections of Clexane, an anti-clotting due to being bed bound. This had to be continued for 28 days after being discharged. I didn’t like the injections, and never saw the needle as the nurses always did it in my arm for me. But to go home, I needed to prove to them I could do it.
I had a choice of arm, tummy or leg. It’s impossible to pinch your own upper arm and inject yourself so that was out the question. My tummy was still way to sore to pinch and inject, so my only other choice was my legs.
Anyone who knows me, knows I have a massive phobia of needles and I cried ridiculous amounts when I saw the needle and tried to inject myself. The nurse showed me how to do it, but I had to actually do the injection myself or they weren’t going to let me go home. I cried for a good half an hour trying to pluck up the courage to inject myself, I was saying to the nurse and Mum that I couldn’t do it, and then I just did it. My first response was “oh that wasn’t actually that bad, I don’t know why I cried so much.” Typical me, but looking back it must have just been the adrenaline in me that numbed it because every night after that was a battle and they hurt more and more each evening!
Along with my Clexane injection, I was also still taking a number of other drugs and supplements, however I wasn’t discharged with them all… I was meant to go home with the following:
ANTIBIOTICS for a UTI I’d developed as a result of various drugs slowly leaving my system; PARACETAMOL for pain relief, or COCODAMOL when pain increased; PREDNISOLONE my beloved steroid (sarcasm!) as I needed to be weened off of it as I’d been on such a high dose for a while; ADCAL D3 which are a claim supplement as steroids can affect your ability to absorb calcium from food; ENOXAPARIN the medical name for my daily clexane injection; POTASSIUM CHLORIDE as my levels still weren’t in the ideal range and FRESUBIN ENERGY because my diet was restricted, I needed to extra calories from the drinks to help me gain some weight again.
I went home with the majority of it, but I was missing the following:
Some Adcal D3 tablets as I should have had enough to cover my course of steroids, some Prednisolone as I was on a decreasing dose over four weeks but only had enough to last me a week, and the Fresubin Energy drinks as the nurse never came back with them for me…
Despite missing all of that, I still walked out of hospital with a pretty full bin bag full of medication. I wish I’d got a picture of it but I was too busy crying and choosing what I wanted for dinner (I chose pizza!)
All of this meant I was taking a total of 22 tablets, 3 lots of medicine and one injection every day for at least the few days before any of my doses started to be reduced. It was a pain but I was extremely lucky to be alive considering how long I’d been dancing with death.
Yet even as I was being discharged and the nurses were ticking off my medication and putting it in my bin bag for me, they were still trying to give me someone else’s medication to go home with. The lady who was in the room before me had been prescribed ibuprofen and multivitamins which I nearly took home. If it wasn’t for me challenging it saying that I can’t take ibuprofen and that I didn’t recognise the name of the other drug, I would have taken them home none the wiser.
Despite eating everything I physically could at all hours (even snacking three times a night – yes they were 3am Maltesars) due to the ravenous appetite I had developed, by the time I left I was only a stone lighter than before I fell really ill as a result of being connected to an IV, or having an NG tube to help me keep food down. I think the lovely (slightest hint of sarcasm there) Fresubin drinks towards the end of my stay also helped – I was having three of them a day and each drink was an extra 300 – 400 calories which I definitely needed! So despite having roughly 8lbs of toxic colon removed as well, I don’t think that weight gain was too bad, I definitely needed it! However, all my muscles had wasted away.
I’ve always been told I have a bum, but when I was discharged you’d never know that. It was as flat as a pancake, and although my tummy was bloated, that was from gases and healing from surgery, otherwise you would probably have been able to see my ribs. You could also see my collar bone pretty clearly.
I am in no way shape or form saying that these are not acceptable or likeable features on people, however they’re simply just not me and it upset me a lot more than I thought it would being as slim as I was.
It was little things like my clothes not fitting me properly, despite being as bloated as I was. I’d lost so much weight, none of my bras fitted me, my jeans fell down (despite being super bloated and having ordered a 30 inch waist pair whilst in hospital – I was a 32/34 inch waist before admission) and my jumpers drowned me. It was a horrible feeling. I was a size 12/14 when I came back from Turkey, but when I was discharged I’d gone down to a 10/12. I’ve always said I wished I was a bit smaller than I am, but I hated the fact I was only smaller because I was so ill as it was a constant reminder of just ill I was and how close I’d come to death.
The first few nights of being at home were painful and strange. I was still on 40mg of Pred and wanting to eat everything I could find. I was also still waking up at 4am, hungry as a horse so I set up my bed side unit with snacks and my sharps box for my evening Clexane injection.
When I was having the injections in hospital it was always in my arm, and I’d just go to sleep afterwards however at home I was doing them in the top of my leg and I soon learnt that after I’d done the injection I had about 30 seconds before my leg would go really heavy and I’d struggle to move it. So this is why my sharps box lived on my bedside table, so every night I could inject myself, pop the needle in the box, swing my legs round and settle into bed. Might sound simple but it took my almost 45 minutes most nights to pluck up the courage and actually inject myself – most nights there were tears.
However I would get myself some chocolate as a treat for after I’d done it to give me motivation each night! Despite being home from Turkey for two months at this point, and having not seen the outside world for a month, I think it was pretty good going that I still had my tan, as you can see from the array of scars on my legs!
My second night at home I woke up in a daze early one morning, must have been about 3am? I needed the toilet but was too sore to sit straight up, so I went to grab the bars along the edge of my bed that I used in hospital. I panicked when they weren’t there and went to grab the button to call the nurse, then panicked when I couldn’t find it either. So I started shouting for help, in my half asleep state. I didn’t recognise the room I was in and couldn’t work out why there were coats hanging up and why the wall was so close to my bed. After a confused minute I realised I was at home and eventually managed to roll myself out of bed and get to the toilet. But it really threw me, at first I thought I’d been moved to another ward in the middle of the night and no one had told me!