As I spent 2.5 weeks in hospital following surgery I thought I'd break it down into sections. I've been home since Thursday and it's now Sunday - the first time I've had time to myself.
Here is week 1
Mon 10th October
As there wasn't a suitable pick up on the dial a ride type bus service I booked a taxi to the hospital. Admission was 3pm but of course, being in pain sitting in normal upright chairs I had to sit in the day room for a few hours until my bed was ready (waiting for patient to go home - remember this for when it's my time to go home). I was put in a single room, no ensuite, but happy that considering previous bowel surgeries, a private room is the one thing you really want. It wasn't as nice as when I go to the cancer ward, I didn't know any of the staff, I felt like a number, on a conveyor belt, no eye contact, that sort of thing.
Because I was having surgery and I have controlled drugs, I didn't see the point in self medicating so handed those over (mistake that I forgot my lozenges and only had 2 in my bag which I always try to carry).
Tue 11th October
I was first on the list 9am - Mr A(a) the guest surgeon was coming from Nottingham.. I'd got a cannula in my right hand. I was hooked up to the usual monitors, cold and hypoglycaemic from having no food since Mon am (despite signs in the day room saying all op patients are to have carb sachets prior to op to avoid this). As before I was sat up and put my feet on a stool, semi naked since my back was bare and struggling not to shiver, my pelvis hurting because I'd not been able to have some of my drugs. The anaesthetist told me they hoped I'd have a bed in ICU, but if there was no bed they'd have to take the epidural out and manage the pain with other drugs. His name, given my surgery was bloody hilarious but I shouldn't name him here. He said he liked my tattoo (pair of eyes on my back). He injected a local anaesthetic into my spine area then told me I'd feel pushing but to say if it hurt. It hurt. He injected more anaesthetic, tried again, and again. At this point I was feeling dizzy and queasy and getting a bad feeling about the whole thing. Before I passed out I was put on my side and given o2 for a few minutes before he had another attempt with me lying down. At this point a second man was assisting for the final attempt and I was laid on my back at last and covered. As the anaesthetic was fed into my hand and my spine I felt my left leg go numb but pins and needles and my last thought was fear of paralysis in that leg (cheery thought huh).
I woke at 12.30 in recovery in a true world of pain, crying with my knees drawn up rolling my head. Pain was all I was aware of, everywhere. I vaguely remember my surgeons coming to see me and telling me all had gone well but I couldn't respond. They said they'd see me later when I was more comfortable. The lady taking care of me gave me pethidine by the clock, the minute I was allowed another dose I had it, after 90 minutes of this, still with my knees up trying to reduce the pain in my torso I was just crying quietly. They sent me back to the ward but I was in so much pain I just didn't move, barely spoke (had o2 mask on anyway). It was 2pm.
My surgeons and a registrar came to see me and explain again what they had done (as I'd been told before) and that it was very complicated but Mr A had done the surgery and Mr A(a) from Nottingham had held his hand. I was told I could eat when I was ready so I had a beaker with a spouted lid of packet tomato soup. At that time, it wasn't all that bad. I was also offered a vanilla build up shake, which although cow's milk. was cold and the best thing ever right then.
I was on IV fluids so didn't attempt to drink water. I was in more pain lifting my arm, especially my right. The thought of reaching 6 inches to get my phone was too much. There was just pain.
Wed 12th Oct
So much pain, I can't remember if I slept. I had two spoonfuls of rice crispies almost lying down. Nurse came to ask if I wanted a bowl to have a wash, I said I'd need help, being in so much pain and unable to move. She went off, healthcare H came in and put the bowl somewhere near my feet on the table with some wipes. She then went and told me to let her know when I'd finished and they'd do what I couldn't manage. I burst into tears and said "but I can't do it, I can't move, everything hurts". She got stroppy and said she was told I just needed a bit of help in hard to reach areas. I said "but I told you I need help, I can't do it". She was right in my face, finger pointing and spat "Excuse ME but you told me nothing, I was told you can do most of it yourself". She discussed it with the nurse in my earshot and decided it was a misunderstanding. They came back and H told me "you have to push through 'a bit' of pain before you get better". I screamed in pain every time they moved me. The nurse had been off to get more pethidine to help me through. They rolled me onto my side, changing the bed under me at the same time. I managed to wash "my front" which given I had a catheter, surgery site stuffed full of iodine soaked wadding and had to reach caused more pain. The pain had settled into specific areas - my head, neck, spine, across my lower back (new pain not the usual pelvic pain) and obviously all across my abdomen from the second surgery site.
They tried to sit me up in bed but my head felt like it was splitting, like no migraine I have ever had, and I was in hospital for four days with my first, had to be sedated for several.
My surgeon came to see me, I told him how much pain I was in, about my head that I thought it was a problem with the anaesthetic, he nodded but didn't seem to be concerned.
I ate 2 spoons of whatever lunch was. I had bloods taken, so not much movement there and then - the pain team came.
Jean was so wonderful, she listened to my list of pain, my history of pain and could see from my face, tell by my exact description what I was going through. I told her every time they tried to sit me up it hurt so badly in my head, even propped up and lying down was the only way to stop that part. She was so lovely I cried and thanked her for being the first person to listen. She said pain was a terrible thing and that she would go through all my drugs and come up with a better plan. Hope at last.
I just lay in pain, not moving any time I was alone, I couldn't think of anything but how much it hurt and that it wasn't right, I should be in ICU with the epidural.
At dinner time I ate lying down, a few mouthfuls then Becky came as I'd started vomiting large amounts into cardboard bowls. I can't tell you how bad that was, being yanked upright to avoid choking sent pain like a hot rod into my head and down my spine and across my lower back, my stoma site and abdomen felt like I'd been kicked in the wound and every spasm of peristalsis hurt more. The misery of being sick is bad enough. I think I just lay there with my eyes shut - the lights hurt my head and my eyes. It was like having a migraine where the pain stopped in my head when I lay down but I had a stiffness in my neck on the right side.
Thurs 13th Oct
The pain eased a little in that it was concentrated in the areas it was in, just not spreading so far if that makes sense - as the swelling went down I suppose. I was also back on my other drugs.
Today Sally and a different nurse came to give me a bed bath. I told them about the previous day and they were both disgusted. Sally said I should never have been made to have one, especially in so much pain on the day after surgery. It hurt but they were much gentler and kinder.
I was sick after lunch this time, they insisted on sitting me up at mealtimes. I insisted it hurt and shrugged down as soon as they'd gone. Just as a man came to take my bloods, he said "....I'll come back later...".. He didn't.
L from physio came. I knew her from when I was at primary/early secondary school and I remember not liking her, but not sure why. She showed me the breathing exercises I had to do for my lungs. I told her everything really hurt, but I'd been trying to breathe as deeply as I could. I had little else I could do.
Maurice, Sue and Charlotte came in the evening and, having kept a little food down at dinner time was feeling a bit better. Nasty Tea Lady I remembered from previous op who'd just said NO to my request for soya milk. I was ready for my first cup of tea. She asked if I wanted a drink in her usual abrupt manner. I asked if she knew if the soya milk had arrived yet - it had been ordered the day before but wasn't here yet. She said "Well they won't put it on your table". Um what? No I assumed they'd put it in the fridge, I was bed bound and didn't know where the fridge was, much less be allowed to go in there.
"Yes I know that, but when the drinks have been round I've asked and up to now it's not arrived"
"Do you want some if there is some?" very pissed off now.
"Erm, yes, that's why I asked" As she stomped off I shouted after her "Do you have a problem with me because you were rude to me last time I was here?".
She came back slamming a glass of soya milk on my tray - as she was walking away I said "Thanks, but I wanted it in tea". She stomped off and returned with one.
I felt so miserable I wanted to cry, I didn't understand why me having soya milk was such an issue every time. She was so rude and I was in pain, I was a patient, why did I have to be subjected to this on top of everything. In front of my visitors and other patients' visitors.
So now I really felt victimised. Staff hated the fact that I didn't like milk in my tea, kept making me endure more pain by sitting me up, making me sick. I felt like I really was imposing on them and they didn't want me there. I didn't want to be there!
Fri 14th Oct
Physio L came again. Despite all my tears and pleading that it hurt too much that I couldn't tolerate sitting much less standing or walking, that I didn't have pain if I lay down, she insisted on making me walk, sobbing, holding my head with one hand and her arm with the other. We got to the ward door and I insisted I get back to bed. She made me sit in the chair while my bed was changed. The second it was ready I crawled in and the pain started to go. The pain was now around my stoma, base of my back. When I lay down after being up at any angle pain spasms went down my spine and base of my back. I had funny whooshing noises in my head the longer my head was up, even when lying down.
I slept during the afternoon. Apparently the pain team had visited again but I was asleep.
Becky came again as I was forcing a few mouthfuls of chicken casserole down (remember I had to give up on my vegan diet because of the trauma of getting a decent meal in this hospital). My eyes were shut because of the bright lights. Again I was sick, bowlfuls of the stuff again - usually 200-300ml. She grabbed the first bowl in time. The nurse who was on now had thought I was sick because of an antibiotic injection into the cannula so that was changed, then I was sick again as she injected a flush, I was still sitting to stop choking, my head splitting. After being in spasms of pain down my spine again being upright to be sick, I lay down and the pain stopped in my head, went down my spine and then settled again. Becky asked "why does she keep being sick when she sits up?" "I don't know" was the reply.
At this point I've kept no food down since Monday 8am, it was now Friday evening and I was back on IV fluids, catheter still in and no explanation why I could only cope lying down. I couldn't read, everything was blurry, at the end of the day my ears were whooshing even louder, there was so much noise in my head I hated it. The bed felt like a boat when I shut my eyes at night, I pretended it was a hammock and rocked myself to sleep.