Monday
We got up ridiculously early as we had to be at Preston Hospital for 7.30. I had a shower and said goodbye to Mum and Dad and Tom (who was already up - jet lag!). We didn't have a good night's sleep, but neither of us expected us to do so, who would with a major operation just round the corner and all the uncertainties it brings with it.
We got to Preston ridiculously early: of course, there was no traffic on the road and we had allowed for road works etc just in case. We then sat in the car in the car park for a while. Matt wanted to get to the ward early, but I didn't, I had no wish to be there an extra minute than needed. We were a little unsure as what to expect when we got there. I had read a leaflet that said that you get 'dropped off' no waiting for the operation, when I queried this with the Specialist Nurse, they said that Matt would probably be able to see me until it was time for the op. It turned out she was wrong and the leaflet was right. We arrived, the nurse told us to say our goodbyes and then Matt was set out. He was so flustered that he couldn't find the door out, and ended up saying goodbye again as he walked past me a second time trying to find the way out.
I was taken into a small ward and told to change into a hospital robe and my dressing gown, which I did. I then had to do a sample as I had to have a pregnancy test before surgery could happen. I was so flustered that I didn't quite understand what she meant and wondered if I had to do the sample in the cubicle. I had to ask her in the end, and got told there was a toilet I could use! How embarrassing!
From now on my memory is pretty hazy of this day, but at some stage I saw Nick Wood, who told me that he had heard from The Christie but they hadn't come back with much useful information as they hadn't received any of my scans! He didn't know why they hadn't received my scans and was pretty ashamed of the fact (they have had them for over 4 weeks). Anyway that was that, he was going to do my op. I asked him about the +/- on the letter from him around the omentum (stomach flap thing), he said he was definitely going to take everything out: womb, cervix, fallopian tubes, ovaries, appendix and omentum, he actually said to me that my omentum is diseased and needs out. First time the word disease had been used around me.
A nurse came in to settle me on the bed and gave me some relaxant (temazepan?) as I had to wait for a lady in front of me to have her small op first. I don't remember waiting at all, so I guess the relaxant helped. I think they came for me just before 10.30.
I think this is when I saw the anaesthetist for the first time, a lady who was very reassuring. She explained that she would put an epidural in first and then the general. She kept saying not to worry and that she would look after me, which helped.
I also at some time saw a junior Dr who came in to see me to explain that he would be present during the operation, would it be ok for him to put my catheter in, and then a general discussion about my condition and why I went to the Drs in the first place, medical history etc.
I had the epidural, I bent over whilst my spine was fingured, a local anaesthetic shot in and then an epidural needle put in. I didn't feel a thing, but didn't feel any numbness either, not sure if I was supposed to but my feet, tummy etc all felt the same? I don't remember anyone saying they were about to administer the general anaesthetic but I guess they did - I don't remember much else from before the op.
I remember waking up from the op though - I was in incredible pain. I felt as if someone had carved my stomach in half (funny that!). I can remember a nurse telling me to roll on my side which I did with a lot of difficulty and pain and her putting a cold wipe on my back and asking me if I could feel if it was cold or not. Everywhere she put the wipe I could feel it was cold. This apparently shouldn't happen. She then said to me she could give me some paracetamol - I was beside myself! Then around the corner came the anaesthetist with a huge syringe of morphine which she injected straight into my hand - she said that the operation area was huge which was why I was experiencing so much pain! Anyway the pain stopped so that was good. I was then hooked up to various drips including a morphine one which I could administer myself by pressing a button, I could have a shot every 5 mins if needed. I can remember hitting the button a lot that first day.
I am pretty sure that Nick Wood came by after I was on the ward to tell me how the operation went, but I have no idea what he said to me. I have a flash back of him telling me that it was Pseudomyxoma Peritonei almost with a grin, but I have a feeling it is a false memory from the drugs rather than reality.
I can remember having some dinner that day too. I was surprised that the food didn't look too bad, but I didn't eat any because I fell asleep whilst trying to feed myself and when I woke up it was all cold.
Matt came to see me for visiting hours (6-8). He had had a pretty rough day. I don't remember the visit, but he tells me that I was awake, but very drowsy. I certainly don't remember anything else from the day.
Tuesday
Tuesday I don't really remember anything from Tuesday, except that Tuesday was the day that I started to be sick. I didn't have an appetite, but was told that I needed to eat something so I tried. I had half a yoghurt and a bite of a banana and 5 minutes later was spewing into a sick bucket. Not great - especially when you have a cut down the middle of your stomach - it hurt like hell so swear words were used!!! Nurses left me to it, I thought they were ignoring me as they went round the ward washing everyone else seeing to everyone else's needs but with hindsight I now realise at that point I was probably the sickest patient on the ward at that time so they left me to last for that reason. Just as they came in with a bowl of hot water and got me to the edge of the bed (no mean feat with loads of tubes and bags etc hanging off me) ready to get on a chair to give me a chance to wash (there was blood everywhere as I had a catheter in so no pads) a whole load of Drs I didn't know came in. They paraded in, discussed me amongst themselves, using lots of medical terms and then asked me if I had any questions. I lost it at that moment, eyes filled up with tears, I didn't even know what they were talking about, didn't know who they were, was completely disorientated with the drugs and just said I couldn't think of anything. They then left, the nurses got me to the chair, I came over really hot and sweaty, so one ran off to get me a fan whilst the other gave me some wipes and left me to it as I cried and felt sorry for myself. I was completely overwhelmed and needed a hug from someone to tell me it was going to be ok, but there was no one to give me one so I felt extra special sorry for myself. Not a good place.
I did manage to get myself reasonably clean with the water. The nurses came back and got me back into bed. We were served lunch, once again I had about 2 mouthfuls and then 5 minutes later everything came back up - so once again much pain, swearing and the curtains were drawn around me to leave me to it.
I don't remember much else from that day. Matt brought Tom in to see me after school (between official visiting hours - we were allowed as we live sooooooo far from Preston). I wasn't 100% sure it was a good idea, but Matt really wanted Tom to see me. At the time I had all my tubes still in and an oxygen tube up my nose (which I hated). I sent Matt a photo of me to show Tom to prepare him for it. When he arrived, I could see that he didn't know what to think, he couldn't hug me so I gave him a firm handshake. His face wobbled, so I took the oxygen tube off, which helped (luckily the nursing staff didn't notice, I got told off quite a few times for taking it off and not replacing it!). He was ok in the end, very careful not to knock the hospital bed, very careful with me. Such a sweetie, I felt sorry for him. He managed to tell me what he had been up to at school, we had a good conversation in the end. After about an hour, they left for tea in Booths whilst I went back into a drugged sleep.
Wednesday
Wednesday is also a blur and probably my darkest day. I was beginning to wonder how much longer I could cope feeling like this. Nothing seemed to be getting better, I couldn't see a light at all, I was very miserable. I still had everything connected up to me and was still quite poorly. The nurses didn't even try to clean me today - so I was still in my operation gown, still hadn't done my teeth even, my hair was matted beyond recognition. I once again tried to have breakfast - yoghurt and a banana, had a spoonful of yoghurt and 5 mins later spewed it up with more swearing. The curtains were drawn around me and I was left to my misery. I lay back down on my bed and clicked on more morphine to take me to a nicer place. I didn't even try to eat lunch, but the smell of other people's lunches around me was enough to get me going again. I didn't have anything in my stomach so this time I brought up bile - which meant even deeper heaving than regular food - which of course meant even more pain - oh joy!
Matt came to see me at 2.30 visiting time, but I wasn't really up for much conversation, I couldn't keep my eyes open and in the end Matt held my hand whilst I fell asleep, it was just what I needed, some comfort whilst spinning in and out of consciousness.
After Matt left tea was served, I had a mouthful or two and once again spewed everything up. I was retched. Mum and Dad came to visit in the evening, I couldn't hold a conversation with them, in the end, Mum stroked my hand whilst I went to sleep - I felt like I was a 6 year old girl again, desperately needing comfort from my Mum - the magic worked, I relaxed and felt lovely. Mum kept it pretty much together as well - well done Mum, but you touched me big time in that moment, I was 42 going on 4!
Thursday
So, I tried not to use so much morphine today as the Drs were saying that it was probably the morphine making me so sick. I did really well, hardly pressing the button at all during the night. However, this also meant that I didn't sleep so well. I woke up with a start around 2am completely disorientated. I had NO IDEA where I was. All I could see around me were green curtains and white ceiling tiles. I was by myself, I couldn't hear anyone else, Matt wasn't there, Tom wasn't there - I am never without either of them. I was laying on my back, and attached to something I couldn't see. It took me a long while to work out where I was, initially I thought I was in some sort of a mental institution! I didn't get back to sleep again!!!!!!!! Also the alarms on the morphine drip kept going off - these are really loud really annoying alarms, and the nurses don't come to turn them off straight away - I had a headache before too long. In the end they had to get an anaesthetist up to sort out the drip. She ripped it all off and started with a new one as she couldn't stop it alarming either. The whole ward must have been kept awake by it.
Breakfast was same old same old, half a pot of yoghurt and 5 mins later it all came back again. Then I had someone from the pain team come to see me. She said that I should be on intravenous painkillers and anti-sickness drugs and come off the morphine, so the nurses acted on that. Then a whole load of Junior Drs came - the lead one put me on nil by mouth - only water nothing else as she thought that my tummy had stopped working due to surgery. I wasn't going to complain as I didn't want to eat anything anyway.
In the morning I developed a really really bad headache. It started at the back of my head and gradually moved up and over to my eyes. It was debilitating. Some nurses had come with a bowl of water ready to sit me up in a chair and give me a wash. They left me with my legs over the side of the bed whilst they went to get something, I couldn't stand being sat up and slunk back down again on the bed. So no wash for me, I was still in my operation gown and still hadn't done my teeth at this point. They came back and I said I just couldn't sit up.
Nick Wood then came to see me, he felt my tummy and said it was lovely and soft and thought it was the drugs making me sick, not my tummy. He immediately reversed what the other Dr said and told me to eat for hunger. I also got permission to take the oxygen off at last (I realised that if I breathed hard whilst my obs were being done, my oxygen saturation levels would go up - so I did that a couple of times and got told I was ok - fab, at last something was going my way). I was then also taken off the Morphine and epidural. Fantastic, for the first time I could move my body and lie how I wanted to lie not how I was being forced to lie by all the tubes etc. I told him about my headache and he immediately diagnosed an epidural puncture. Basically how he explained it to me was that the anaesthetist whilst putting in my epidural punctured one membrane too many and as a result my spinal fluid was leaking into my brain, giving me a huge headache. It will go away after a couple of days untreated, but there is a procedure called a blood blot which can be performed which can relieve it: you have a second epidural, and then blood is taken from your arm and injected into the epidural space, this forms a clot and heals up the space from which the spinal fluid is leaking. The only way to relieve it is to lie flat on your back. He said he would let the anaesthetists know and they would come to see me about whether I would need the procedure.
Matt came to see me at visiting time and it was whilst he was there that an anaesthetist came to see me. He basically said nothing would happen today as it was too late now, but to drink plenty of caffeine as that can help with headaches. I couldn't believe my ears, nor could Matt, but he went straight to the hospital shop and bought me two bottles of coke: one full fat and one diet. (He bought full fat because I hadn't kept anything down for so long he thought I needed the sugars!)
He then went home. I got served dinner - tuna salad. A nurse came in and gave me intravenous sickness relief but said it would take 30 mins to take effect, so I waited. Janine came to visit this evening which was lovely. She was able to get a brush through my matted hair so I could feel some way normal again and we were able to talk normal things. Was a pain that I had to lie flat, she had brought me magazines etc, but I couldn't read them with the headache. Anyway, I managed to eat a couple of pieces of cucumber, 2 new potatoes, some tuna and lettuce whilst she was with me and it stayed inside. Yahoooooo! She was my lucky charm, it was so nice not to be sick again.
By the time she left I was feeling 100 x better, much more positive in myself, so many progressive things had happened, that I felt I had turned a corner and was on my way to recovery at last!
Friday
Wow! I had some vivid dreams last night. I now understand how the Beatles did their lyrics and cartoons during their psychedelic phase. I was in lots of strange places, one a bar with lots of fat naked men on the floor which you walked on? Me and Matt were in a slo-mo tumble in a bar, going through pains of glass, and lots and lots of strange and weird stuff. The nurse said it was the withdrawal from morphine - wow, just wow! They weren't scary, just very trippy and psycadellic. If I could draw, then I would have done so to remember them better!
So, today I still had the headache, this morning I was a shaking, trembling, nauseous mess. I managed half a pot of yoghurt and it stayed in, but everytime I sat up my head hurt like hell. A nurse popped by and asked if I would like a shower. Of course, I was desperate for one, I was still in my hospital gown, but I knew I would have to sit up and it would be agony for my head. I weighed things up and figured that a shower, clean hair etc would make me feel better and would be worth the pain of standing up. So I said yes. Oh my god it was painful. The nurse had to help me because I was shaking so much. Basically we ripped the hospital gown and stockings off, I sat down on a stall naked and she showered me. I used shower gel on my hair and body - tried to get the worse of the blood off and then begged for her to finish and dry me down. I put on one of my new nighties and stumbled back to my bed for blessed relief of the headache. It was a very very painful, undignified shower, but it was worth it as I felt so so so much better afterwards.
As the morning went on I got more and more upset by my headache - finding a comfortable position to put my head and aching shoulders was getting harder and harder. A nurse saw me struggling and asked if I wanted more painkiller, I was at my maxim for pain and said yes. She went away and came back with an injection which she put in my arm. 10 minutes later I was in relief - I couldn't believe it I could feel where the headache had been, but it wasn't hurting - it was lovely.
Of course 30 mins later an anaesthetist came to see me about the headache, and I was sitting up and smiling. She was surprised. I explained what had happened, she said that if it can be managed by painkillers, then I wouldn't need the blood patch and anyway, it should go away of its own accord after about 4 days. She said she would leave me until 2pm and see how I was then, but to let the nurse know if it came back. The problem I kept being told is that it is very unusual to get an epidural puncture from a hysterectomy epidural, normally it is the pregnant population who get it, I got the feeling that they either they didn't believe me or they didn't want to do it as it wasn't a 'normal' procedure for them. I spent the day with my curtains drawn to keep the sunlight off me as I had gone photophobic!
After lunch the student Healthcare Assistant came in to take my catheter out - it was held in place by a balloon - I did wonder! The nurse almost didn't take it out as I said my headache made it so difficult to stand upright, but I assured her I could take the pain for the pleasure of being a normal human being when it comes to toilet usage. It was a good moment, my first private wee!
Mum and Dad came to see me at first visiting hours, they both said how much better I looked. To be honest, I felt fine, except for the headache. The anaesthetist came to see me again when Mum and Dad were round and because I was slightly elevated and talking to them happily, she said she wouldn't be doing the blood patch as it looked like everything was mending itself. I was in agreement with her, my head didn't hurt as much as it had been, and I was beginning to think that it would clear on its own.
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| Looking better |
Oh this evening, I self injected for the first time. I knew that I would have to self inject on my return home - (blood thinning injections for 28 days after the op). The nurse had been doing them for me in the evening. Last night I asked her to show me how to do them as I knew I would have to learn, so she showed me. Tonight she handed me the syringe and told me to do it. Basically I have to grab a lump of fat near my stomach and direct the needle in at 90 degrees, stab through my skin down to the shaft and plunge. The hardest bit was knowing how much force was needed to get the needle to pierce the skin, but once I got up the courage, it wasn't so bad. It stings, but not as much as when the nurse does it. I guess it is a small price to pay for freedom from the hospital.
Oh in the night I got moved from my windowless cubicle to an end cubicle with windows. The light in the end cubicle didn't work and the Polish lady in it who had had an gynae op, had contracted pneumonia in the middle of the night, loads of people had to come to see her and sort her out, but no-one could see anything as her light wasn't working - the easiest person to switch her with was me as the others in the ward were dementia patients and would have got even more disorientated if they got moved. I felt awful as my 'stuff' was everywhere - because I hadn't been able to sit up everything I needed had to be in touching distance so it took them a while to pack me up and move me.
Saturday
Saturday I woke up a shaking, nauseous, wreck again, the headache was bad, again, we were back to square one again! Not a good place to be. I couldn't eat much for breakfast as I felt awful and at one point I was even crying in pain - desperately trying to find a position to put my head where I could ease the pain. Nick Wood came in to do his rounds, took one look at me and said that he would arrange a blood blot for me today because I couldn't stay in this state any longer. Also, the headache was the only thing keeping me in hospital now, so it needed clearing up. I get the impression he is the head honcho in the department so once he makes a decision it gets followed through. I was pleased to hear him say that, I was in a lot of pain and was very close to asking the nurse for another pain relieving injection but was worried that an anaethestist would arrive shortly afterwards and refuse to do it again because i was in relief, so I soldered through and finally found a comfortable spot to lie in. A healthcare assistant came by to ask if I wanted a shower, I refused, hoping that if I had a blood blot then I would be able to have one by myself later in the day, otherwise it would have to be another undignified spray water at me whilst shaking uncontrollably with pain experience.
An anaesthetist came up to see me, he took me through all the risks, told me that there was only 60% chance it would work but then told me the effect was instantaneous. As soon as I heard that I was desperate to have the procedure. He picked up on this and agreed, that I was a candidate for it and although it is very very unusual to have to perform this on an hysterectomy patient, he would. Only problem is that you need two anaesthetists to perform the operation, so he wasn't sure when it would happen, but my name would be down for it today sometime. I felt so relieved that something was going to happen I was truly fed up with the headache now.
Lunch came and went, it was tomato pasta which was fine, but trying to eat something like that whilst lying flat on your back is almost impossible without help, and I refused to be helped like the dementia patients next to me - that would have been the worse. A nurse had offered me an invalid's beaker earlier in the day so I could drink better and I refused, she smiled as she knew where I was coming from - I was not going to slip that far, I couldn't slip that far, as long as I had a straw, I had a way to get fluid into me. When the Healthcare Assistant asked me how much lunch I had ate, I lied and said a lot, she checked and told me off! I got caught! Oops. Anyway she didn't make me eat anymore and let it go.
About an hour before visiting time the anaesthetist who had seen me earlier came up to collect me - they were finally going to do it. The procedure was classed as another operation, so I had to sign my life away on a consent form again - all whilst lying flat on my back! The last question - "is there a chance I could be pregnant" made me laugh! Really?! I'm on a gynae ward, with a huge scar down my stomach, what did they think I had had done?! I was worried that I would have to walk to the place where they were going to perform it, but they took me in my bed which was good. The nurses looked really confused as I left - apparently no-one had told them I was going to have the procedure performed - I think Nick Wood went above everyone to arrange it!
They took me to an anaesthetist room which was a bit cramped. The more senior anaesthetist got me into position (lying on my side on the bed) and wrote all over my back, working out the best place to put the new epidural in. He then went off to scrub up, came back and started painting me iodine. He painted my back in it and then got hold of one of my arms and covered it in iodine, again and again - he wanted to be absolutely sure that it was sterile. The junior guy then started doing the epidural - injecting me with local anaesthetic and then putting in the epidural needle. He then waited for the other guy to get some blood from my arm. He had trouble getting the blood. He had found a vein, but apparently the blood wasn't flowing quickly enough and he was whinging that the blood would clot in his syringe rather than in my back and that I hadn't drunk enough recently (maybe I should have gone for the invalid's beaker after all!). He gave up and said he would go for an artery instead, by this time I didn't care, he could have gone for my neck and I wouldn't have minded. He went for an artery on my wrist, so more local anaesthetic and then 2 syringes of blood which he passed to the guy stood by my back. He quickly injected them into the epidural space - the space was obviously big as both syringes filled the space. I was then put on my back and told to stay in that position for an hour. The two anaesthetists then left quickly for other jobs and I was returned to my ward. Matt, Tom, Mum & Dad were waiting for me as it was visiting hour. I spent an hour speaking to them lying flat on my back and then slowly, slowly started getting up. First using the bed, then swinging my legs over, then standing and finally walking. I had a huge grin on my face, I wasn't in pain. It was AMAZING, I was in seventh heaven. The anaesthetist came by to see me and saw me sitting up with a huge grin on my face - that was all he needed to know. I was gushing in how amazing I was feeling, and how amazing he was for curing me. Sitting up has never felt so good.
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| Family visit |
The rest of the evening was spent doing all those things I haven't been able to do for the week: sitting in my chair, reading my book, doing puzzles, lots of Facebook and messaging and I got to eat my dinner sitting up (cheese salad - not the best dinner in the world, but I ate more at this sitting than I have in ages).
I went to sleep a happy girl - just one more day in this place.
Sunday
Wow, Sunday took an age. I did get released, but boy did it take a while. I was feeling absolutely fine, no headache so I had a huge smile on my face. I made a point of being completely independent with everything today, didn't ask to do anything, but just did it - going to the loo, having another wonderful wonderful shower and then I got dressed into my regular clothes (the clothes I wore when I walked into hospital). Unfortunately they were jeans, but I was hell bent on making a statement to everyone - I was ready to leave, ready for normal life and being dressed in normal clothes was a huge hint to everyone one - I was not staying another day!!!
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| Tom's thoughts of the day. |
On the up side - Matt send me this little bit of prose from Tom. This caused a lump in my throat - what a sweetie he is!
I was in a ward with 6 beds. I was the youngest on the ward by about 30 years - apparently Gynae problems normally appear later on in life. There were 3 of us with Gynae problems: Jean a lady from Blackpool who was an invalid anyway, she had cancer but because she's a invalid already and over 70, an operation was a huge risk, but if she didn't have it then she would die from it. She decided to go for it and was going to have it on Monday. She was ignorant, only thought of herself and would should out randomly during the night for her husband and then moan when other dementia patients did the same. I didn't warm to her. The other lady with Gynae problems was a Polish lady who didn't have much English understanding at all which made for some interesting conversations on the ward. She had had her womb removed and a large cyst. She was probably a nice person, but as her conversational English was literally the same as my conversational Japanese there was no conversation to be had. She had complications with pneumonia but was looking much better on Sunday and was off all nebulisers. Out of the other 3 ladies on the ward, one, Margaret I think was putting it on! I think she was in her late 60's / early 70's. She seemed to have a different complaint everyday! She loved it when she was given a procedure - when she had an enema (because she was blocked up) she was singing to herself and very animated throughout the procedure - shouting to the nurses, etc etc, calling her husband to describe in graphic detail what had 'come out' but then once that was over and there were no more procedures, she would lie in her bed looking ill. I think she liked the attention. A Dr came to see her once, he didn't sound particularly convinced by her - suggested she went home and attended out patients clinic, which she didn't like. As I said everyday she came up with a new complaint so that she couldn't be discharged. The nurses were very patient with her - I wouldn't have been! That leaves Catherine - a lady in her 80s who had come in after a fall. She was a lovely gentle lady, called Tom a pipsqueak! I think she had lost her joie de vivre. She was in hospital for her birthday - the nurses sang to her, gave her some daffs and chocolate cake. Her whole family came in (she has 4 sons) complete with wives and grandchildren etc, completely wore her out and then didn't come and visit again! She had regular visits from chaplains though (who I think were older than her!) Last but not least was Joyce, who was also in her 80's. She had also had a fall and was a very stubborn old lady and very disorientated (not a great combination). She was constantly wetting and pooing the bed so constantly had to be changed. Everytime she would get very upset shouting: Please no, please no, PLEASE NO and then scream as the nurses changed the sheets. I think it took at least 3 of them to do it each time. This was ok during the day, but it happened in the night too. She came across as a sweet old lady the rest of the time, but she was always shouting out for her husband Alan, and looking for shoes: "Has anyone seen my shoes, I need some shoes, have you got some shoes you can give me etc" and having random conversations with herself. She was not in a good place, and I have no idea what could be done for her. She refused help from Physiotherapy and Occupational Therapy, she didn't have a visit from the Dr the whole time I was there. I guess she is a stat - very sad - I wonder where she will end up?
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| My new tummy |
I had lunch, it was horrible. It was supposed to be vegetarian moussaka but it consisted of potato and tomatoes? I couldn't stomach it and anyway, I was going home to home cooking in the afternoon so figured I could leave it for now.
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| Very happy to be home |
The journey home was fine, it was a little long and I was thankful to get back here. I had to take my belt off my jeans half way through, but we did it, I was home and very very very very very very relieved to be out of that place. Let's hope I never have to go back.
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