Sat 15th Oct
I managed to wash myself lying down, rolling onto my sides and then letting nurse and healthcare change the bed underneath me again. After the pain of walking on Friday with the evil physio I was determined to stay flat over the weekend. I told staff that's what I was doing and nobody seemed to be bothered by that. I knew, from epidural horror stories that women often got headaches afterwards but this was more than a headache, it was excruciating pain, photo phobia, violent vomiting, pains in my spine and back, stiff neck, blurred vision, hearing problems with constant noise in my head/ears. All of these were allayed by lying down.
Having not kept any food down now since Monday morning I was getting desperate. Nobody seemed to be listening to me, just throwing anti nausea drugs at me (I didn't feel sick, it was a reaction to being up) which increased the risk of constipation. My stoma was only passing air. But of course there was very little in there. I sent a twitter message with my symptoms to Beating Bowel Cancer who was online. After half a slice of toast I felt a bit better and ended up googling it myself and we both came up with a dural puncture from the epidural anaesthetic that I didn't even get the pain relief from, there being no beds in ICU.
The treatment was: bed rest (figured that out); caffeine (weird - I started drinking tea asap); hydration (I was on IV fluids due to not eating); pain relief (I'd started taking paracetamol on top of everything else I was on); a blood patch could also be used.
The needle which should have just administered anaesthetic next to the dural sac which is one of the layers of a "bag" containing cerebro-spinal fluid had made a hole in it. The type of epidural I had was a bigger one than used in labour, so it was a big old hole.
A blood patch involves going back to theatre, having blood taken in a sterile environment, another epidural needle above the original one and then the blood should clot, filling the hole to stop the leak. Then you just have to wait to replace the rest of the missing fluid but symptoms are instantly improved - after lying flat for 4 hours to allow clotting.
It was now 4 days since surgery and this should have been done after 24 hours. I was feeling better from surgery, the pain was improving but I had these other symptoms preventing my recovery.
I managed a salad for lunch and a sandwich for dinner - lying on my side lifting my head. The bed was still moving. It was vibrating when I spoke.
Sun 16th Oct
Up to a whole slice of toast today. Still getting pains down my spine and in my lower back - in fact they were worse now, maybe because the internal swelling was going down? It was like when I was in a car crash with severe whiplash 20 years ago, I still have no idea why I have this new pain. I still didn't feel sick but took the anti sickness in the hope it would help.
Maurice kindly went to pick Karys up and left her with me for an hour or so otherwise she'd not have been able to visit. It was lovely to see her, but very disturbing and distracting having noises in my ears and my head and their voices sounded mechanical and robotic, so did mine. I felt like I had permanently blocked ears like being on a plane taking off.
There was a particularly nasty patient opposite me. She shouted all her conversations, repeated all her stories to everyone who came in (7 x tea, 6 x obs, 4 x drug rounds, hourly checks, Dr rounds, cleaners) argued with everyone about things she clearly didn't really know about. For example, she argued that they'd changed her heart drug for one on a lower dose and that couldn't POSSIBLY help her and would make her worse. By the time she was having this argument with the doctors, even when they pointed out she had read her dose wrong (2 tablets x 3 times a day not 1) it was still slightly less. The quite obviously told her different drugs have different properties. No shit? I mean my patches are 80x stronger than morphine but both are opioid painkillers. The same dose of morphine as my patches would kill me.
I got some peace when she and the old lady who sadly had give up, refusing to eat food, just the odd shake or cappuccino, went to church. Old lady went in her bed. She'd come in fully able, had surgery and lost the will.
Nasty Tea Lady had been zapped with my politeness gun following our exchange on Thursday and was now ordering more soya milk, having asked me how long it lasts, so that "Mrs Almond doesn't get a poorly tummy". I was relieved she'd changed her attitude. I can only assume she was scared of soya milk because she didn't know what to do with it and she was upset at being forced to deal with it?
Mon 17th Oct
Washed myself in bed again. Two physios came today. I told them about my symptoms, that I was reluctant to get out of bed if it might cause further damage, since I'd been unable to see anyone over the weekend. One went to talk to an anaesthetist and he said it was OK so long as my symptoms didn't worsen. Of course they would if I was walking? So I walked to the nurses station and back, my hearing getting worse to the point where I couldn't hear myself by the time we got there, I had shooting pain down my spine when I got back into bed.
Dr M, an anaesthetist finally came to see me. He confirmed I'd got a hole in my dura, backed up everything I'd thought at last. He apologised (I could probably sue) and it was put in my notes. He also told me about the blood patch, but given the time lapsed said the risks might be worse than any benefit I might get at this stage. I wasn't sure, the thought of another puncture filled me with dread, the patch may not work and need repeating. I'd managed by lying down for two days to eat....but how long would I need to live like this? He said he'd return Wednesday to decide about the patch.
Pain team came again to check I was happy with new drugs. I was taking gabapentin (sometimes given to epileptics) with the patches, and continuing with the lozenges (crack lollies) for breakthrough relief. These were when I wanted them (PRN) not a timed dose.
That evening a blind lady was admitted who snored loudly all night. She was having a stoma but because Mrs Loudmouth know it all kept shouting at her I didn't bother talking to her.
Tues 18th Oct
Blind lady had a shave this morning. My face might have been a picture when I heard the electric shaver going, I really believe it was her face she was doing......
Physio came again to walk me round - a little further today. It hurt my head and I hated the deafness and pain when I lay down again but I wanted to get home and I needed to walk if that was ever going to happen.
A new patient replaced blind lady - young woman in a lot of pain who at least was in my age group so things were looking up.
Phoenix came to visit during a free period which I'm sure boosted my recovery another notch, as did seeing his sister on Sunday.
Jean from pain team came again, my surgeon and then F1 Dr M C. She was a young junior doctor and Mr A, my surgeon, had told her about my TV appearance and my "interesting" medical history and asked permission to take a full history as part of her training, to report back to Mr A. I'm always happy to talk, maybe too often and too much, about my illness, it is after all my life now. What she didn't realise was she would be there 1.5 hours until 17.15. She took pages of notes as we covered all my four surgeries, 3 minor procedures under anaesthetic, various chemo, radiation, physio, menopause, side effects. She'd have to type that up later...I didn't envy her, look how long it takes me to type up a couple of weeks! She said some very nice things to me, that made me cry, because I believe she meant every word of it.
All through our conversation I could hear Mrs Loudmouth arguing with anyone and everyone. She refused to wait in the day room when they needed her bed as car crash patients had been brought in. "That's not my fault" was her response. With the constant noise in my ears and her noise I almost got out of bed, opened the curtain and told her to shutthefuckup and have a little consideration for other people for once in her life. She'd been single 26 years, I wasn't surprised.
Wed 19th Oct
Really sleepy today, didn't bother with washing. By now there was a lovely lady in the opposite bed too and we all talked to each other and got along. The day before I'd wanted to leave purely because being in the same room as that poisonous woman was making me so miserable. Now I was happy to stay with good company and genuine, if poorly and frightened people.
Dr M anaesthetist came to tell me they'd decided the blood patch was too much of a risk now and as my symptoms were improving, though still there, the hole was closing on it's own and it would take a few weeks but it was better to let that happen naturally. As things worsened over the day, rather than being bad all the time I was mostly relieved by the decision but still scared how long I'd be disabled by this, I needed to be recovered for chemo.
Thu 20th Oct
After my slice of toast I was sick as the tea lady was coming round and others were eating their breakfast still, The tea lady closed the curtain for me whilst Carla, young patient, told the nurse and Coral pushed her bell as I looked incapable. I was crying in pain with every spasm shooting pain into my lower back down my spine, crying because I hate being sick and because I'd had 5 days of keeping food down and now I was going backwards. The nurse just in the doorway wasn't interested but I got a fresh bowl to fill from a healthcare as they noted how much more fluid I'd lost.
By lunchtime I had to try to eat again to replace what I'd lost, determined to get home as soon as I could. Every mouthful caused me pain under my ribs, felt like my stomach and a large hard lump under the stoma were pushing up against them. Again, pain down my spine and lower back. I was pretty sure I had a blockage which was making me sick. I'd been putting food in, nothing was coming out still and something had to give.
Physio hadn't been for 2 days.
Fri 21st Oct
My catheter was removed at 6am. I ventured to the shower and sat on the chair the whole time, doubled over because the pain in my back was too much to sit up straight. I'd had to sit outside for about 10 minutes whilst a patient made several phone calls in there. "Sorry I didn't realise anyone was waiting". I told her "There's always someone waiting on a ward this size". Seriously, did she not think anyone else would want to use the facilities? It was also one of two toilets for women. Anyway, as I was drying off I started feeling shaky. Now the sensible thing to do is pull the cord, naked or not. So I threw my dressing gown and slippers on and staggered down the corridor and made it to my bed before almost passing out. Sally told me off for being a hero and checked my obs. Soon after, I was sick again. Carla told my I smelled nice though (Calvin Klein darling).
Coral went home and a woman who had just found out she had pancreatic, inoperable, cancer was in her bed. She had 10 visitors round her bed. Carla had a couple of extras, but with the extra 10 all adults having several different conversations amongst themselves, the noise in my head and in the room was unbearable. A nurse came in to tell them there were supposed to be 2 visitors, it wasn't fair on other patients. She told them her diagnosis and was let off, because she'd dying. She was going home the next day. I am also dying but I would never allow so many visitors at once, everyone knows the rules, too many people at once is too much for me when I'm ill. She kept going on and on about how she has 10 grandchildren and 15 great grandchildren. I had to keep getting up every half hour to hour to go the the loo to empty a bag of air. Because I didn't feel I could unleash the vile smell on the rest of the room. It was hard to navigate past all the chairs, they even commented I was unsteady on my feet, having to grab bed rails on the way. After a while it got too much and when they'd gone and nurse came round she started again. I couldn't help crying and the nurse said she knew what was upsetting me and it wasn't fair and she was sorry, that nothing she could say would help. She offered to have a word with her, to let her know my situation too. But I couldn't deny anyone their initial way of dealing with the shock, the need to talk about it if that's what helps. It just feels like a slap in the face that I won't see my first grandchild let alone my 15t great grandchild......having 2 kids that would be a horror in itself.
I had to leave the room later to sit outside and cry again. She wouldn't stop telling everyone she was dying. Holly, one of the healthcares got me some tissues and and gave me a cuddle. I stuck my headphones on and bought some TV.