Laying there on the bed once again, waiting to be wheeled in and cut open, I could see the medical staff bustling in preparation through the square windows on the double doors. I focused instead, on the beeping machines that I was being hooked up onto. A pillow was put under my head and the hospital knickers were slid off, which is always a very incredibly vulnerable feeling - as I stated in my post about the first operation, in order to remove the tumour I needed to be face down, bum up for the duration of the surgery - so of course I had to be knickerless but there really is nothing attractive about that image. As I was counting down from one hundred whilst breathing in the general anesthetic, my anxiety grew once again. My mind rushed with worries of being left awake during surgery, a whole group of strangers staring down my bum and ridiculously, that they may judge the four tattoos below my waist - as if that is the focus of the whole event.
It must have gone black at some point as I woke up in intensive care, a different room and felt incredibly groggy, sore and couldn't swallow due to the tube that was down my throat throughout the past several hours. My surgeon came to my bedside to talk through the operation and I couldn't concentrate on a word he was saying, I couldn't keep my eyes open and all I could manage was the one question that was swimming around my head; ' Do I have a colostomy bag now?' - he confirmed that they managed to successfully complete the operation without needing to put one in and that was all I needed to give in to my exhaustion and fall into a dreamless sleep.
I woke up in my hospital room with a nurse hooking me up to a drip full of pain relief - I was given morphine and was incredibly itchy - I had scratched myself leaving painful red lines in criss cross patterns all over my arms and chest. So on top of the morphine I was given antihistamine to relive the itching. I was on a plain diet consisting of plain jacket potatoes, mash, rice and plain chicken - I couldn't even lift myself up to pour myself a glass of water and everything had to be done for me. The rest of that day is a blur, aside from being woken up for my daily injection to thin my blood and to take my blood pressure and temperature, I just wanted to know that my husband had been contacted to give an update on how the surgery went and as soon as I knew he had, I fell in and out of sleep.
Due to Covid-19, on top of having no visitors, us patients were not allowed to cross paths with each other. I knew there were people in the other rooms but I had no idea who they were or what they looked like. After a couple of days, I was taken for a short walk up and down the corridors for exercise and physio to strengthen my legs and to learn how to walk again; this was only for ten minutes a day , once a day so the rest of the time I was shut away in my room, mostly alone aside from a visit from the pain team once a day, a visit from the digestive diseases team once a day and sparodical visits from nurses taking blood tests, blood pressure and my temperature. Whenever I did see someone, the conversation mostly circled on how my pain was, if I'd been to the toilet ( I couldn't urine by myself for a day or so due to the effects to my nerves so was heavily bloated ) and due to the impact of the surgery I had lost control of my bowels so I had nurses in and out changing the bed. It became very soul destroying - I hardly saw anyone and when I did the conversation was disheartening.
After the first couple of days, I started making general conversation with a few of the nurses who were looking after me and eventually started having laugh with them as if they were old friends - to the extent that there would be a few of them in my room at a time to have a chat and making jokes. One day the group I had become close to were all off work on the same day and I cried - It was like a weird hospital version of Stockholm syndrome - I was stuck in a room, wired up to machines and I was beginning to miss them as if they were old friends. I was so lonely and facetiming my husband and children was making me feel worse as I just wanted to be there at home with them away from my own thoughts and company in the clinical setting I was stuck in. When one of the nurses returned a couple of days later, she found me sitting by the window looking out over Harley Street staring enviously at the people going about their lives and invited me out to the seating area out in the corridor for a cup of tea and a chat, one by one the team that I had become close to (I'm aware I sound like such a loser) came and sat with us and we ended up having a laugh and a chat that had nothing to do with my surgery, bowel movements or recovery - it was incredibly helpful to my mental health when I felt at my lowest.
The food was getting boring by day 6 - plain food that tasted the same in the same routine everyday - I was beginning to feel imprisoned and eventually lost my appetite. It was noticed that I wasn't eating and then different dishes were added to my options - I had fish and chips as my first meal once my restrictions were lifted and I was so excited for dinnertime - I couldn't wait to eat something a bit different. My husband had started delivering snacks in plastic bags hidden under clothes and toiletries to help me to eat - driving all the way to and from London with goods to help me feel more at home. I also received many bunches of flowers over my stay - from work, from friends and my husband - the hospital ran out of vases in fact and the nurses commented that my room looked and smelled like a florist compared to everyone else's. My brother, his fiancé and my friend Hannah all arranged to have facetime conversations with me which really helped when I felt to isolated. No matter how lonely and shut away I felt, I was incredibly grateful for the support network around me.
My original duration in hospital was to be around 5 nights - the days were extended due to the complications with my digestive system and the pain I was in so as the days ticked on I found the strength to push harder during physio and everything I needed to do to be discharged. By day 7 I found myself pacing the room without realising it, after taking my drip to the bathroom with me, I carried on walking to and from the bathroom and suddenly saw myself as a caged animal; something clicked in my head that for the sake of my mental health, I needed to get out. It wasn't the fault of the hospital or the staff, Covid - 19 was creeping up in numbers again and they had to do what they needed to do - I was and still am incredibly grateful to the team and my surgeon who saved my life, that worked with me, took the time to talk to me, ask me how I am and make the effort to treat me as a friend and not always as a patient. Aside from the calls with my family and friends, those were the moments that were getting me through the ordeal. If I had been stuck in my room for over 23 hours a day with no physical human interaction at all I think It would have made it much harder, it definitely gave me a better understanding for those who live alone, especially at the moment with the country in lockdown.
I had been given medication to stop me from having such little control over my bowels and it had the opposite affect - I couldn't go to the toilet at all and had the stomach of a heavily pregnant woman. My surgeon came to visit me and asked the male nurse to give me an enema. This happened to be on a Friday night and to ease the awkwardness I joked that I bet this wasn't how I imagined spending my Friday evening,- he joked that he betted that some people were ding something similar on their Friday evening and we both burst out laughing - it gave me the atmosphere I needed after having people look up my bum for the past week. The enema didn't even go successfully - he asked if I would prefer a female nurse to do it and I just said that I didn't think it would make it any easier - my nerves were so effected that I couldn't use the muscles I needed for it to work and water just ended up all over me and the bed - another bed change then!
Near the end of my stay, the nurse who I had woken up to hooking me up to a drip just after my surgery, came in to check on me, she said how much better I looked and how much of bad way I was in just after my operation , it gave me a boost to know that I was getting better, I was improving and I just needed to keep my strength up to get out.
Whilst I was in hospital, the tier system was announced in the UK meaning that certain areas of the country were in higher tiers than others resulting in stricter restrictions in those tiers - I had no idea on what I would be coming out to and what tier London, or the area that I lived in was in. I felt more cut off from the world than ever.
By day 10 I could shower by myself, I had more control over going to the toilet and I was even allowed to put on my own pyjamas rather than the hospital gowns I had been wearing over a week. It was on that day that the doctors came in to tell me I was welcome to go home. I jumped at the chance - and once I have received my huge bag of pain relief, hospital knickers, gauze and bandages; I rang my husband to collect me for the long and painful journey home.
I was welcomed in by my mum who, along with my husband had put up welcome home banners and balloons around the house. I counted down the hours until my children returned home from nursery, surprising them when they walked through the door and received the biggest cuddles and kisses, praying that this was finally, the last operation.
Its been nearly five months since the last operation; I'm still looking over my shoulder that I may have to go through it again, I wake up in pain every single day, I wake up from nightmares of being operated on due to my PTSD and I'm still on medication. However, I am so so very proud of my body and how far I've come. I don't want this to all be for nothing - If I could even just use this blog as a platform to raise awareness and to give comfort to someone or a parent of a baby that has just been diagnosed, then there has been some positive that has come out of this. As much as I don't want this to define me, Its a massive part of my story that has changed the person I am and that is something that will need to be celebrated sooner or later.
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