This is probably the last post I will make Pre-Op.
Its both a blessing and a curse to know weeks beforehand that I am having permanent Stoma Surgery. Many Ostomates out there never got that time knowing. One blessing is that I am able to plan and prepare well in advance, and organise a Hospital List tailored to my own complex needs.
Before this, I have never stayed in hospital for anything longer than one night, even when I really needed to after my attempts (they just sent me home the next morning) and even after my first round of surgery to remove the Xenomorph. Before that experience, I had to look to the Internet for an idea of what I should bring with me for a Hospital Stay. There are plenty of articles out there listing in detail what you should pack for a Hospital Stay, but they are all aimed at expectant mothers. I tried looking up Cancer surgery and treatment but again, they were more aimed at how to get through Chemo and Radiotherapy. There wasn’t really anything for someone going to hospital for life altering surgery, so I had to think on my feet. Since then, I have a few experiences from that previous surgery to fall back on in adapting my checklist for this one.
I am supposed to be in for just a week, but since I don’t know how my body is going to react or if there are going to be any complications that might prolong my stay, I am packing for two weeks instead to be on the safe side. Of course if I was allowed visitors I could send things back and forth, but Covid has put a stop to that.
Pyjamas. What am I going to wear?? Certainly not hospital gowns, that’s for sure. I wore one during theatre and overnight last time and it almost strangled me in my sleep. Also they are also never made big enough to fit in boobs and bum and belly without something being exposed to the.. Elements. They smell clinical and the fabric feels rough and scratchy, not the most comfortable thing to be wearing when you can barely move. Besides straightforward comfort, I want to be able to wear things that are, well, mine. I am taking a selection of different types of Pyjamas, as I don’t know what my body will be capable of managing after theatre. Last time I was very bloated and sensitive and even my softest leggings hurt me around my waist, so I am taking Pyjamas as well as Knickers and soft trousers that are a size bigger than what I normally wear, so I don’t have anything digging into my waist. I am also taking several night dresses as I don’t know how long I will have to contend with catheters and other wires. I am also taking slippers instead of socks to avoid having to bend over to put them on.
Toiletries. Since I have never stayed longer than one night, I have no idea how I will be able to shower or maintain my hygiene. When I tried showering with a bag the first time, it filled up with water and fell off. I also don’t know how well I am going to be able to move my body to physically get it clean. I have invested in a couple of cans of shower foam that don’t need water or drying, so they can be used in bed, as well as some dry shampoo Caps that clean my hair without having to get it wet. Also I learned back in December that while I will be given plenty of painkillers, hospital doesn’t tend to think of the external effects of back-end surgery. This time I am taking things to counter skin irritations such as soft gauze, nappy rash cream, Andrex Toilet Wipes and Period Knickers, as like hell am I going to be given pads!!
Keep warm or keep cool? Mum’s experience in Hospital at the same time last year was cold. My experience last Christmas was that I was far too hot. So this time instead of packing fleecy winter Pyjamas, I am packing a high powered mini desk fan.
Entertainment. I don’t know how well I am going to keep myself distracted on waiting for outcomes and test results, but I still need something to counter all of those dead hours being unable to move or really engage my brain, which will be fuzzy from drugs and surgical trauma. I have a Lenovo Tablet that I have installed with apps like Netflix, BBC iPlayer (so I can continue my love of Peaky Blinders!) and also reading apps like Kindle for books and Readly for magazines, and Audible for when I am too exhausted to even manage reading. I was also given a hilarious Swear Word Colouring Book by one of my friends, so that will be coming with me along with my case full of Sharpies.
SENSORY/ANTI ANXIETY: Hospitals are not good places for Autistic people. They’re not good for people with Anxiety Disorders either. All of the bright lights, busy atmosphere and loud noises make for an all round sensory nightmare, let alone the acute anxiety from waiting for outcomes of the surgery itself and its subsequent tests to see if it has even worked. I also am not able to have anyone with me to help me communicate or understand the barrage of information I am being given through the course of my stay, let alone give me a hug. It is also not conducive for getting a good night’s sleep, and the idea of enduring a week or more of disturbed nights is not an experience I want. I took an eye mask and some silicone ear plugs last time and I was able to actually get some decent sleep, despite being woken by the nurses to check blood pressure and heart rates, so I will definitely be taking those again. I am also adding noise Canceling headphones for during the day. To try and counter the lack of comfort and hug-starvation I am taking a weighted blanket and a stuffed animal – in my case a Jellycat Fluffy dragon. I also want a few home comforts so I hope that my Ward will allow me to use my RGB night light, my own cup with my favourite Teabags and Coffee and my own water bottle with flavoured infusions. To help with communication, which due to Autism has never been my strong point, I am taking a pack of disability communication aid cards and something called a “Hospital Passport”. I had never heard of a Hospital Passport before my diagnosis and before my first surgery, my hospital hadn’t heard of one either, but found it very useful and very informative for my care.
A little gift for the Nurses. They’re paid to do their job, but I know all too well that they’re paid nowhere near enough and I still want to show my appreciation for their hard work, especially as I am a very hard person to deal with. For them I am bringing a little tin filled with mini cakes, all individually wrapped to counter the germ transmission risk! Besides, people rushed off their feet all day clearly need an extra source of sugar.
Lastly, there are just a few things that my last surgery taught me I desperately needed to remember this time round. One was having a Straw. When I woke up from my Op I found myself desperate for water but in too much pain to sit up and drink, so I ended up wearing more of it than drinking it. If I have a straw with me I might have a better chance at satisfying that desperate post-Op sense of thirst. Also I just remember to take my Walking Stick, so that I am able to get into and out of the Ambulance when I eventually get to go home, cured or not.
So the bags are packed. I’ve had all of the Pre-Op energy drinks. I have run myself ragged trying to fit everything into the last 24 hours. This is my last night as a Pre-op, bagless, normal-bodied person. See you all on the other side. See you all in the Stomaverse.
The Gothstomate 