Tears, tears and pain, with a dash of Bridget Jones pants and swellibellicous. These past two weeks has in many ways been a game of two halves, but with a promising finish – the beginning of the end, or the end of the beginning?
Week 4 Day 21- 28: 18th – 24th March 2015
In this Week 3, I managed to get out for a drink – to a PUB! On a slow night, as I wouldn’t be able to cope with crowds! Phew, good job it’s only 10 minute walk away. Wow what strange world this is! It reminded me of when I played Caliban in The Tempest years ago, or just thinking about this ‘brave new world’, outside my door and the cocoon that was, still is my haven. Boring one nevertheless! It is strange when you go out, and haven’t really been out for a while. There is a little fear, of those ‘others’, those who do not know about my missing womb. It was lost don’t you know. Funny as I still have a cast on my arm, for the broken wrist, so I have a symbolic signifier of one that is impaired, one that is disabled, albeit, temporarily. But that said, it means my strange and slow walk could, if someone was that interested in my appearance, put it down to a broken body, an ‘accident’ that only my arm is showing. ‘Who knows’, they might think, ‘she could have fallen while doing something like snowboarding or other such exciting things’. But to talk to someone behind the bar, to talk to an other human out side of my convalescing network! Bliss… And that added to the few prosecco’s, I did indeed have a little sore head.
But onto more important things. I woke up just into Week 3 on my side! That was a breakthrough. That rather than lying still on my back. Although it is not really really comfy. I can’t wait to lay on my belly, but that isn’t happening any-time soon. On another note, I have not seen any stitches dissolving, do I, should I? I’m not so sure. But will still keep a look out. On another note – the bladder. I do still have bladder discomfort in this week. Not sore, or no infection as far as I can tell, but discomfort nevertheless. My spirits are plummeting this week as I have a little spotting and waves of tiredness, like a heavy blanket enveloping me. The tears are now everyday. Not all the time, but everyday. It’s like a sadness, not for my womb, not got to that – yet, but more about the fact that after a couple of weeks, it all gets a bit much. Lack or real sleep, and constant discomfort, and not living the life you usually do!
I did read some advice on my post hysterectomy blurb. Ooooh, it says I can can do a small amount of ironing, and do the washing by Week 4 (but still not lift stuff really), but do not stand for long periods ironing, or peeling spuds! how exciting is that! NOT. Really?? I know this is a female op, but us women do a whole lot more than washing and ironing, and peeling spuds. In fact, I’m not too sure I do an awful lot of that!
So I get to Monday 23rd March in Week 3 and I’m still down 😦 But hubby was on Radio Manchester about the Strangeway’s riots, so that cheered me up a little. Yet it reminded me of my job. My self, my identity. One that is not here right now. On Tuesday 24th i went out in car hubby to drive to hospital for my daughter’s appointment.It was the first time as a passenger since that other time I tried and failed! It was uncomfortable but not as bad as before. With the care park full hubby dropped us off and in we went. Daughter has a lopsided diaphragm on top of everything else is what the ct and x-ray showed! She was fab, as always. We walked out and down road to meet hubby as he’s gone off to Waitrose. That was good to get some walking in, even though not that far, and it did pull a little. So I had a week or so from blubbing my eyes out but it returned as I say these last couple of days! I’m so fed up with feeling discomfort in my body, right inside under the scar, it’s getting me down. I rang hospital and spoke to a nurse. She said as long as I have not got smelly discharge and no high temperature it should be fine – charming! But is was a bit reassuring. But I’m still down. And to top that off, my scar has sunk on one side! This is making the ridge/shelf over my scar even more pronounced. Well that along with the swelly belly (swellibellicous!)
Week 4 Day 29 – 35: 25th to 31st March
So this is how it goes. Days spent in bed all morning reading – if I can, lunch then I might have a shower, and wait for Deal or No Deal to start, a show where people open boxes in the hope of getting money! Then Come Dine With Me! This is the life, I think not, well not for me. While watching these ‘chewing gum for the eyes’ shows I Google my daily obsession. How long will I be in pain? When do the internal stitches dissolve? When can I resume my life!??? So on and so on. And more, in between looking for a crazy holidays that will take me away from the mundane. Something to look forward to! So that is it. But I have tomorrow to look forward to I get my cast of my arm!! Cant wait for that. I assume all with be well in the world, what with then being able to wash two handed! Oh how wrong I was.
26th March came, hubby went off to Ireland for a conf, and my sister came over. She was fab, and drove me to the hospital. BANG down again. Really down. The cast came off and the pain was pretty bad. The consultant said that was normal, as the break will be fine, but everything – tendons and muscles have been still for weeks and need to exercise. This was not what i needed. Every small move – ouch. I had a splint, so at least I could wear that out, in case of a knock! My cousin came this evening…. she stayed over – that was good to see her. We shared a bottle of prosecco’s mmm…. Went to bed at 2am chatting all evening. It was lovely. But i was still sad. That next morning, we walked to the coffee shop, but i then needed to get home. She wanted shoe shopping, but I wasn’t up for anything of the sort. We went home. I flopped. Ouch my wrist, ouch my abdomen! Off she went and i laid on the sofa with Noel Edmunds (well he was on the box) and Daughter. My Dad and his wife came for a visit and a cuppa. That’s lovely, but this is my first experience of all encompassing, all enveloping sadness. Also my first night without having another adult apart from daughter (but she is intellectually disabled) in house overnight. We’ll be fine. I cried with the pain of doing wrist exercises – well at least that’s what I told myself and my daughter. I decided, on doing more searching i had found an YouTube teaching video of my hysterectomy. It was an NHS one. I watched it. It was horrific! But i loved it too. It made me reflect on my operation and realise i was not going to heal in a few weeks! IT WAS INDEED A BIG DEAL!
That next day, I spoke to my Mum, well actually I shouted at her ❤️ . 😦 . I thought she would come. I got all dramatic and said ‘you never visit, phone ….’ A complete and utter exaggeration! My brother in law rang … ‘What brand of water?’ he bellowed down the phone. ! ‘I’m in sainsburys ….’ My Mum had called him, telling him i wanted some bottled water! But that was a guise to get her over!! ‘I don’t care what water it is’ and I didn’t want help i thought, i wanted my mum! He dropped water, and clearly my Mum got the message so she was with him. ‘call me when you have had enough and need her picking up’ he said on leaving. We had a cuppa together and chatted a bit. I showed her the gory YouTube video which she liked! I had a shower and made myself feel half human.My daughter got bathed and we went to the Chinese 10min walk away. It was lovely. But I was only half there. We came back and watched The Voice and I drank a few peronis, while she had some pear cider. Oh the life. That next day Sunday 29th March, i laid in bed, my daughter was happy for the lie in. We had a bagel for breakfast and cereal for lunch. Missing hubby and his cooking!! We even had cereal for lunch. Then three of my nieces came over that was flipping lovely. They are so so brilliant. That early evening, hubby came back from Ireland kebabs in hand, well I just the chips for me (I had a bit if fish in oven) Mmm… Daughter was not okay 😦 she is poorly. It was brilliant to see hubby, i had missed him lots.
Tears continued, but lessened as the new week began. My daughter and I went out to M&S. We both got new PJs, which given I am in mine a lot was great! But i then went to the knickers section. My daughter and i had a giggle, as we looked at the Bridget Jones tummy in ones. Well that’s what she called them. I laughed, but apparently they help keep the inside healing together. Actually I found out they do work, a bit. So that’s a result! 🙂 . So I get to the end of Week 4 and begin Week 5. My wrist still hurts, my abdomen in some discomfort, and I have tired and a little teary, but I think on the up…. after all my bladder seems to be less uncomfortable!
Well, I have got to day 21, so three weeks post op! I still have limited mobility, some bladder discomfort, and a few pains. But on the whole not bad. I would LOVE now for my arm cast to be off, got another week and a half of one armed showers, dressing and such like! I say not bad, but it is three WHOLE weeks, and I can’t do more than a 20 minute walk without thinking I need to hold onto my belly in case my innards drop out. Not a pleasant image! Still, where was I 8 days ago. Maybe I’ll do a weekly or so post, rather than daily, as let’s be honest, not much is happening! And more apologies, if boredom sets it. It’s even worse for me!
9th March Day 2015: Day 12 A venture out and café Americano!
Last night and today, I’ve been thinking about those internal stitches! Nice bit of needlework, not! Where are! What happens to them? Will just drop out? Well according to others they do generally and usually anytime! Not helpful really. This vaginal cuff apparently looks like a sock. I don’t really want to think about it that much. So try not too…. rather I look down at my legs! People talk about the pain and so forth but what about the other things. I can’t yet shave my legs! Probably a combination of the op and the fact my arm is in a cast. But oh my gosh, they are the hairiest legs EVER! I am now thinking, not about blocking the sink, but they are so long will make a perfect foundation for a wax job! I’ll think about it! But on this day, day 12, I’m feeling a little better is this the two steps forward?
So off hubby went to Edinburgh, he’ll be gone for a couple of nights. YIKES. He’s been so good at caring.
One of my girlfriends arrived, ready for shift with homemade carrot cake and gift. Poor thing, she’s coming to see me for three days, and this is not party central. I feel a bit bad as I can’t host. Not that she is expecting that. Good job my sister had made her bed though as she confessed to not doing that particular job at home. We had a good day catching up. Eating soup hubby had left, and relaxing. I then against advise, I’m not too sure, it’s day 12, I need to text my legs properly, to go out for a walk. We ventured out for coffee. I was salivating at the thought. But my slow pace meant the walk took about 20 minutes, normally a 10 minutes one! I really needed to be in a recline position I felt, so got in and went straight for the sofa. In jumps friend as three old folk move. YES. I sit, slip my shoes off and put my feet up. It was a trek but kind of felt worth it. Mmm…. strong dark coffee coursing through me!
We chatted more and I put my friend through the pain of watching my wedding DVD! It’s okay, we chatted through most of it!
Off to bed, but sleep still is not coming easily.
10th March 2015: Day 13 Lost days
Last night we had dinner from hubby’s pre prepped curry. It was lovey.This morning, though I did not wake happy. Not a great nights sleep and now feeling the cumulative impact of not sleeping a whole night for two weeks. I’m so tired, this blog isn’t worth it!! I also have a little spotting (tiny amount), bladder ache and general meh feeling. I said that my friend could leave me to sleep in the afternoon, to go off to hunt and gather bread from M&S. I did get a bit emosh today. I think it’s tiredness but it’s so frustrating. I feel so vulnerable and helpless. I’m in discomfort and need rest. Not a great day really but better for friend being around. I don’t want to write this blog now 😦
11th March 2015: Day 14 Nothingness
I seem to have lost a day somewhere and not much improvement! Bleeding a little today. My friend i watched two Twilight movies last night, that was fab, as read all the books and watched the films. She is a bigger fan, clearly having watched the ‘extras’ on the DVD! Went for coffee….. We did walk out for a coffee this morning. She left after lunch, and hubby was due home later. I took more of a turn for the worst. Maybe going out for coffee three days in a row was too much. That depresses me as it’s only a 15 minute walk there and back. I still don’t want to write this blog 😦
12th March 2015: Day 15 On the up??
Feeling better. Didn’t go out rested up. Friend came over this arvo we chatted for several hours! It came for her to go, we changed, well she did some flower water, Oh. MY. Gosh! one really really ponged. She even took the rubbish bag out and double bagged it! Poo doesn’t even cut it! Still hubby is out next Thursday so we arranged maybe her to come over for some bubbles! I still have not yet had any booze. But I don’t really feel like it and want to be off all pain killers.
13th March 2015: Day 16 Two weeks out!
Two weeks today I came out of hospital. It’s I think a struggle between keeping mobile so that you don’t get chesty and cough (first time last night coughed again a bit, but had a restful day) and feeling better in the abdomen. Although of course coughing hurts that too! Here’s the thing, you have to get mobile so not clotting, and chesty lung problems, but you literally can’t move much, and when you do, your body tells you to stop (due to aforementioned fear of innards moving south or pain! Hours and days meld together, and weekends, or that Friday feeling no longer hold excited anticipation with what to wear, eat or drink! Daughter came home today, which was fab to see her. She missed us terribly too (and her room!).
14th March 2015: Day 17 Missing family events 😦
Last night didn’t need pain meds! But did this am. Snuck out for coffee before Mum or Sister could know! Feeling a little naughty which is good! They don’t even want me to walk down the stairs! I’m still not convinced that I can do it but feel okay-ish. Bladder still sore when bit full. I did rest up and need some walking. I missed my great niece’s dedication today. Sad about it. We are a close family and I would loved to have been there, but the thought of being in a car for over an hour there, sitting in the church, and then an hour back – just couldn’t do it. Way too uncomfortable. Tonight we had a conversation about the booze! Hubby said ‘do you mind if I have some wine’, ‘No of course not’ I replied. Poor bloke is run ragged around me and daughter now she is back. And it is Saturday evening. I wanted bubbles, I have Prosecco in the fridge – waiting to be popped! I go and have a look on line! There are differing opinions but i am still taking paracetamol and I don’t want to impede my recovery or be at risk of lowering my immune system. So he went to corner shop to get me Choc cheesecake. Not quite the same. 😔 But tasty nevertheless!
15th March 2015: Day 18 – Mothers Day and reflections of past times
Mum, daughter and sis, went to church and lots of well wishes came back, and so did the little bunch of Mother’s Day flowers. 🙂 ❤
Walked out for a coffee for second day in a row again this morning. Yippee! And the big news… By the evening I was 24 hours without pain medication. Don’t get me wrong, I could take them, but, with the wrist break I’ve been on them for weeks! Bit of spotting too but not too bad. Oh dear, sharp stabbing pain lower right abdomen. Maybe the walks to the coffee shot have been a bit much. But I turn to nice things. Mmm…. Roast, reading and old photos. So I spent time looking at and photographing old photos! I posted some on FB. In the late 1990s went travelling with my daughter and did some crazy arsed things. Just me and her! It’s made me ponder over how ‘safe’ my life had become! That’s not the same as boring or unchallenging (intellectually disabled daughter and her medical needs are anything but, then there’s work, and now current predicament for me! Nevertheless spontaneous (a bit) and daring, giddy stuff eludes me, and has done in past decade or so. Stabilising impact of marriage (2005) – great, but doubt that’s the culprit per se! Full time academic career began in 2005, (post post doc) I suspect was the leveller and restrainer of crazy times (acting, singing and travel for more than a week or two outside of conferences) as restrictions based on commitment, writing, lecturers, admin , serious job! Of course there are huge benefits – money, (to go on shorter holidays), security (of which I had none in years gone by as a lone parent from a young age), and loving work (although really really can’t say that about admin, ever and however little part it plays ! But has to be done.
Anyway got some nice comments on FB from sharing the India and Australia ones. One was a ‘charidee’ bike ride across India and the other a 6 month trip on own with daughter (well school was shite for her at the age of 10 with all her learning probs, and home schooling for 6 months once I finished my MA was a right laugh – NOT! So jabs, prep, and the tearful long goodbye with Mum and family ensued! (Mum tried all sorts of emotional blackmail to get me to leave daughter, from ‘you go and enjoy finding yourself, it’ll be better without 11 year old in tow’ to ‘if you take her she will be ill and might die’ (the latter was her last resort)! But off we went… 1997, Landed in Calcutta – boy was that a culture shock. Tears rolled quietly down my cheeks that first night as we closed the door of the toilet in the hope the infestation of cockroaches would not sneak into the bedroom! Lol! We had no mobiles and even outlets to email were few and far between! How things have changed! Still, these are things that you ponder when no work, can’t get out and faced with photos of times when not only were you fit and able to move freely, but times were more risqué 😱 .
16th March 2015: Day 19 – Monday Oh get me out of here
The sharp stabbing pain last night continued for a bit. I stopped doing anything. To add insult had a rubbish nights sleep!
Hubby went off to take Mum to hospital – she will be having gallbladder op then in coming weeks/months. At least I should be better! I Stayed in bed or on chaise lounge all day. Most I did was move a few bits of clothing from clothes horse to radiator and un scrumple some of them (daughter trying, but…) I get told off for moving! But I did feel a bit better for staying largely immobile!
17th March 2015: Day 20 St Patrick’s Day, The sick role, eating and clothes.
I wonder if I might embody the sick role and normalise bed and moving from bed to chaise lounge and back! Choc brownies come in the post – dairy free yippee (and as these are ‘healing’ ones they are apparently calorie free! This might be a white lie, but given I am turning from someone who enjoyed the gym 3 times a week to a sloth like creature I’m wondering if/when I can wear waistbands again, or if I will actually be able to fit into my skinny jeans and fitted clothes 😝 . Buying a couple of floaty tunic for my sore abdomen on the internet was good momentarily! I don’t usually.
Lying here in bed with a book, while being distracted by the noise from down stairs office. Hubby is listening to ‘difficult jazz’ while he works and the ‘de de de de diddly de ping’ of countdown coming from the lounge where Mum is ironing while watching day time tv… rings through my ears. Soon it will be deal or no deal. She has told hubby I must not walk up and downstairs – I disagree knowing I can! But when the doorbell rang I was half way downstairs to get some water! I heard her voice and I crept back up and got into bed as hubby and I cheekily shared a smile. He said to mum as she came in the door with a lift in his humours ‘oh I just told Christine to get up those stairs, your mothers here!’. She laughed thinking he was joking, 😄. Evening turned to night… and so it goes on…
It has now been a few days since I posted the first blog about this ‘moment’ in my life. I hadn’t quite realised how much sitting upright (at desk), due to gravity was a no no! Or so my body told me. Also it is a heck of a lot easier writing on my iPhone notepad with one hand than typing on a keyboard with a cast on! I’m in discomfort and sometimes pain – most of the time. I search for how long this period will last but it seems everyone is different. Well today it is International Woman’s Day, so I thought it fitting I would continue. Although I feel a little bored of it, so forgive me if I bore you!
27th February 2015: Day 2 – We leave the hospital and my womb behind
I wake up in hospital again, although not really having slept for more than two hours at a time. Along comes my cold toast and I manage a better job with the Marmite today – marginally. That is I don’t feed my sheets, and make it look like I’ve had some kind of bowel accident. My wound dressing is blood soaked but it seems dried now (I hope and pray, as that will aid my escape – if it is dried). For today I am supposed to go home. The nurse came and said that my consultant will be around to discuss what to do about pain relief and stuff and if indeed I can go home. She looked at me kindly and said ‘the notes suggest you are to be discharged today, with a query over tomorrow?!’ That horror hit me then I suddenly I felt well enough to get out of there. ‘I think I’ll be fine’ I claimed! But it would still be a while yet before my release. My Mum and sister came in but I wasn’t really much company. In fact I said ‘I’m not really in the mood for talking’, Mum shuffled off mumbling ‘I saw a canteen somewhere, you stay, I’ll go and have a drink and bacon roll’! My older sister and I chatted away. Off they went, after I point out to Mum ‘that bacon roll wont have done your gallstones much good’!
Hubby came back and I was pleased to see him. I was now on the rectal painkillers and paracetamol. Oh the joy. No really – NOT. Then a health care assistant came by. ‘Hiya, I’ve come to take out your catheter’ she chirped. ‘I don’t have one’ I replied. ‘Oh you already had it out?’ She questioned. With an air of achievement in my voice, I said ‘oh no I never had one’. She was lovely though. We chatted about her training and how her Mum was having some Gynaecological issues. ‘Oh but she’s older than you’ she quips, as we chat. About midday my consultant came by. This was before his afternoon surgery. His clean smart look with his colourful tie brought a small smile to my face. Evidently though, with his remark, my smile inside had not told my face! As he said ‘what’s with the face?’ I wont lie, I was apprehensive. Unsure of what he was about to do (I had been warned by a nurse that he likes to swiftly take off the dressing on Day 2, I told her under no circumstances was i going to let that happen) he came over to me and my wound. Lifted the sheet and went for my tummy and my dressing. ‘No’ I exclaimed ‘don’t take it off, it might bleed’ as I held out my hands and covered my abdomen. I really didn’t want anything to stop me going home, especially not a bleed. ‘Oh come now’ he said, paternally, and gently shooed my hands away, peeling off the dressing. It came away, quite easily, and no blood gush, but once again revealing the angry teeth – that is the staples that held my abdomen together. He put a tissue over a very small bleed and pulled my knickers over it. ‘Don’t worry about that just put more tissue over it. It now needs some air’. He continued ‘So no need to see me again as all is fine. But the nurses will make an appointment for your stitches to be removed on Tuesday and a 6 week physio appointment also will be made. The doctor will come round and give you the sick note and prescription for three more days of voltarol. You can go when you have all this’. So that’s that then. We leave the hospital by 3ish and I’m sitting on my chaise lounge part of the sofa in front of trashy afternoon TV by 4pm.
It’s heavenly at home. No hub bub noise and just comfort, well for now, as I’ve just had a rectal voltoral. My hubby makes chicken broth, and my younger sister comes to get my daughter after eating. That said hubby sleeps in daughters bed for fear of knocking me, but has phone on loud for me to ring. I end up coughing for most of the night which worried him and hurt me. His to do list – get cough medicine! I decided not to take the rectal drugs as despite them being just that, they were actually beginning to irritate my stomach. (Yes I do have a very sensitive tum). I was going to see if I could manage on four hourly paracetamol. It seems that I could. But the coughing was hurting me and I had a bit of blood down below. Not enough to worry about I felt. But this day did bring a stool – I did a poo on getting home. Yippee, my bowels work! So, currently by bladder and bowels work. sleep didn’t come easy but at least I was home and in my bed.
28th February 2015: Day 3 – Saturday and waking at home
Tea and weetabix with prunes. Now that’s gonna keep me going, and indeed it did. Pain and discomfort is bearable so I’m glad I chose not to take the rectal drugs. My gullet/tummy is feeling a bit better for it. I finished reading Fracture by Anne Oakley. I started it before the op, as a colleague thought I might like it given my wrist break. It wasn’t a challenging read, which was good as that would not work for me. But talking me through old bones and women’s bodies (osteoporosis and the menopause) was probably not an ideal topic – still I read on and found it interesting in part. My husband and I did have a little giggle though at my reading – giggling not recommended, well certainly not a belly laugh! . I’m trying not to laugh about the book thing as it hurts but When hubby walked in and saw me reading Fracture He said ‘shall i get you the sequel to Atwood’s Oryx and Crake – The year of the flood‘ as he looked by my bedside and saw a mix of feminist ethics, Nussbaum and I am Malala. I think those are a little ambitious as my head is mushy and tired! He thought Atwood would be more interesting. (I have indeed previously read Oryx and Crake). Although I need easy reading and that is not the easiest of reads. I’m in bed. It’s hard being dependent, but I genuinely can’t really do much at all. Sleep comes again slightly better with the cough mixture.Mind you we watched a couple of Wolf Hall’s. It was good but no belly laughs there fortunately. Bedtime came uneventful, and went as before but sleep was a little better, but still waking.
1st March 2015: Day 4 – sneeze and ouch
The coughing has been helped by the cough mixture, so this means I can sleep for four hours now at night which is great! For the first time I touched just below my cut around the hairy triangle – if there was one just now! And to my surprise it was numb. Didn’t feel like my body. I look this up and I find out that some people never regain full feeling around their cut and below. ‘I hope I do’ I think. Today was when I started sneezing. Three times now and it hurts! I hope no damage is happening. I put a friend off today from visiting. I didn’t feel like company. Although Hubby is here – that’s different. Today is like the others but I didn’t have a nap. Just laid in bed – writing this on my iPhone note pad. Tonight came and more chicken broth, but surprise, I get a home-made apple crumble and soya ice cream. Mmm… The evening just got better – I had a shower. A SHOWER! Now this takes some doing what with the arm in a cast, the very tight DVT stockings and stitches. So call in hubby! He puts on the shower cover on my cast, (I have to be stark naked for this, as once on I cant seem do anything else) and pulls of those not so sexy DVT/VTE stockings. Into the shower – hubby holds shower head over my head as I wanted to wash hair first so that my staples did get too much of a soaking. Of course all of this is with one hand! I then shower all over. Yippee! That was a task and DVT stockings back on! Boo! (although their life is now limited!). 😉
2nd March 2015: Day 5 – more of the same…
Bored of waking up after four hours of sleep and coughing still hurts. I’m wondering if it’s even worth making these notes as I’m boring myself!! But I crack on as maybe it’s just keeping me a little sane. Hubby brings in cuppa (he has taken to setting his alarm to then tend to my tea needs), and joins me with his. Daughter away at her Nan and Granddads while some convalescing goes on. Hubby has stayed in her bed for fear of… ? Anything, my body is a bit broken! Then comes the prunes and weetabix again – but I like it! And it works so cant really knock it. I’m sitting here in bed wondering if my compression stockings are doing more harm than good now they came off last night and back on? Can they cause an embolism if put on wrong? I ponder this while I hear hubby tapping away at his keyboard downstairs in preparation for his conference in Edinburgh next week.
More paracetamol. I’ll just leave the stockings for now. By mid morning I came to realise that maybe peppermint tea really does alleviate wind pain! I hadn’t had any yet today and the gas pain got far worse. ‘can I have peppermint tea please?’ I call weakly downstairs! ‘Of course, any other tea needs?’ He jokingly responds. ‘Yes while you’re there I’ll have a normal one too!’ Mmm… Looking at my body today! I have a half eery toothy smile down below – that’s the staple stitches! My abdomen is still swollen and numb in places. My legs are so covered in hair I’ll probably need buster plug unblocker when I can actually get to shave my legs. By the evening I felt a bit light headed. My pain management is going okay, but it all feels tight across my abdomen. Oh about the stockings. I asked hubby to take them off for a bit after the shower, but I’m not sure they were put on back properly (I mean who knows how to do it anyway!). Tonight they were cutting in just under my knee. I’ve taken them off as worried they might make things worse! Phew what a relief. I guess I am moving a bit. Bedtime arrives – wish this discomfort would disperse. I ponder, ‘will the removal of the metal teeth relieve me of some tight feeling’? I think to myself as I drift off to sleep.
3rd March 2015: Day 6 – Yikes off with the stitches!
Last night I felt a little light headed. Wasn’t doing anything so not sure what that’s all about? Hubby gave me some dinner in the hope that might help. I seemed okay. But now awake and really really tired. ‘I wish I could lay on my side’ I think. Small things eh? The usual routine, hubby got into bed with his cuppa, brief chat and then he goes off do my weetabix and prunes. All working there! The sky is light and I wish I could go for a walk but it’s too soon to walk more than around the house. Just got a text from my older sis (she used to be a nurse) and it said ‘Hi I will be thinking of you today as you have clips out . but the thought of it will be much worse than the having them out believe me I’ve taken so many out and the main problem is fear of the unknown not the removing or pain luv hug and prayer xxxxx’ Aw gotta love her, so matter of fact about my snarling staples. My younger sis will be round soon too. Hubby is going to pick daughter up from her Nan’s as she has lots of medical tests today (CT scan and such like). He will be gone all day. Younger sis (a teacher) managed to get a ‘work from home day’ to keep an eye on me and take me to get these staples out (or clips as my older sis said – ‘clips’? Sounds so much less aggressive than staple, but they don’t feel like a clip!
‘Oh no’, I have some blood when I wipe my nose. I don’t usually suffer from nose bleeds so worry that this is something to do with the op. I look some stuff up and it seems that the oxygen nose thing, dryness and blood thinning drugs given can have some influence over this.Just more crap to think about in my ailing body.
We arrived at the hospital, the car ride very uncomfortable. ‘Mrs Rogers’ the nurse called, my sister and I got up. ‘It’s Dr Rogers actually’ I say. My sister slightly embarrassed by my critique of the Mrs, said flustered ‘oh you’re not that kind of doctor’ ‘no’ I said, but I worked for it and I’m not Mrs Rogers anyway!’ I’m then worried that this might piss off the nurse that was about to take my stitches out! I said ‘oh well’ (me trying to be light hearted, ‘you know I’m a phd actually, not a medical doctor’…. Blah blah trying to be extra nice as we walk into the room where my staples, (the toothy grimace that lie on my lower abdomen), were to be removed – if only! Back from having stitches/staples/clips whatever out! Phew and it was okay – no really! Flinched more than actual pain, but that was the anticipation as there was no pain!
Back home, phew that was an epic journey! Little sis went off and Mum took over, well actually we just sat together and watched deal or no deal! She’s nearly 80 and I’m shattered. After that I decide my book and bed is calling me. Couple more chapters of ‘I am Malala’ which feels like a mixture of the News, Homeland with a pinch of Brick Lane, all through the eyes of Malala a teenage girl. It’s good. But then sleep beckons and off I drift. Phone on silent and dark outside, I remember my niece was coming over to take over from Mum! The text message read ‘can you open the gate please?’. Oops, but it was fine, Mum had sorted it. Off Mum goes and my batteries are re-charged, well with this temporary low level energy anyhow. We chat, while i direct her through making my dinner (which had largely been prepped by hubby and left over from last night!). She then put out the washing on the clothes horse. I know it doesn’t get more exciting than that! Crash on the A12 and Hubby and daughter are held up. The delay is fine as I was enjoying chatting with my lovely niece, young and enthusiastic as she is. A joy to be around. Unfortunately someone would not be having a good evening, as I think of the crash victims that held my hubby up. Daughter dropped back at Nan’s and hubby home. We settle down for some TV. We go for Fortitude and watch the extra long starter one and then another. The evening was tainted by news on my Facebook networks of the death of a 3 year old little girl with the same condition as my daughter (M-CM). God keep her safe and thoughts are with her family. Bed again, discomfort, again and now I have to wait to take my next dose of paracetamol. Two steps forward, one step back as I feel pain. I then drift off, but to awake for more drugs at 5.50am.
4th March 2015: Day 7 – Fabulous friends
Hubby out all day today working. I had friends planned for today! My wonderful friends. So one that I met at uni and shared a house with back in the day turned up with gifts, food and prosecco in hands. Oh she knows me so well (although I did decline breaking open the bubbles just yet!). We had a brilliant few hours catching up, first in the bed chatting. Peppermint tea was made and we continued. But by late morning I felt the need to have a shower! So naked as the day I was born – I stood in front of her. I wonder if we will giggle about his when we are old. I couldn’t do much after the cast shower cap was on! I felt incredibly vulnerable, not with this friend per se, but just usually if we are naked it is a choice and …. Well it’s just different. But we were fine!! She didn’t care, nor did I really. On went the cast bag and she changed the bed clothes while I was in my en-suite shower. One handed hair washing and so on is a sight to behold when the usual ritual is two handed.
Yay, day clothes on and picnic lunch eaten…. Mmm… Cheeses, samosa, breads… We chatted futures, jobs and all sorts. Time passes and next friend arrives. Now this one I’ve know since we were 12 at school! Seeing each other is like we were never apart! That’s friends. Pain, not so bad, but kind of gets worse as the day goes on. Peeing okay but a bit of discomfort. Door bell goes and off friend goes down the stairs. More flowers. I have many beautiful flowers now but am running out of vases! Friend leaves late afternoon, hubby is almost home, and I go to bed. I awake to the dark outside and we eat delish homemade mildly spicy squash and chick pea soup and settle down to some TV. An Emmerdale and two episodes of Fortitude later and bedtime arrives again. Hubby takes himself to another room. It won’t be long before he’s back, but didn’t want an accidental role or knock just now! Sleep arrives a little later.
5th March 2015: Day 8 – a plateau, do I continue?
Waking up again, this time at 5.10am with some discomfort, I wish I would sleep all night, but no. more paracetamol and again some rest. Wind pain again as I awake at 7ish but this time before the prunes, so they are not the culprit as i was wondering. I wait for my tea needs to be met as my hubby’s alarm goes off at a distance! Today I got more flowers – beautifying the house. Mind you it’s now got to the stage where we have no vases! Off hubby goes to buy one! I try to do some pelvic exercises in bed – tilt, stretch, squeeze is the name of the game I think! More of the same and nothing to add… Except we settle down in the evening to a box set of Breaking Bad – Season 2. Crack of 3 episodes. Fab stuff.
6th March 2015: Day 9 – False joy
Kind of yippee! I didn’t wake at 5 or 6 am to take paracetamol and pee! I think I might actually have woken but willed myself back to sleep! Then woke up at 7. I think some of my nerves might be waking up around my cut. It hurts but not in a way that is worrying me – yet. By 9.30am the single bed was being delivered! Just got to sit back and watch. It’s not like I can even make the bed and I have all that nice matching quilt cover and pillowcases! Oh well some lovely family member or friend will oblige I’m sure.
I’ve had another bed and book day. I started reading one of the Kant’s questions series on Being Human but I don’t have the head for it now!! I am still uncomfortable in two places really – under the cut, outside and inside, but also I feel some discomfort in the bladder region. I shall see how that goes then. I’m tired though now it’s the afternoon with tea and cheesecake in hand, watching deal or no deal as I can’t focus. Too tired. Later on sit at my desk! But before that I go and have a peek at the new bed. Horror of horrors the base of the bed is a different colour to the headboard! How is it that the delivery men brought the bed up three flights of stairs and attached the headboard and not notice that the board was sand colour and the base grey! So on the phone I get. I explain that I was a week out of hospital after hysterectomy and so didn’t inspect the bed on arrival (hubby signed for it!). She was fine and apologised and said ‘we will get the sandy colour base out as soon as possible, but in the meantime do use the bed’! I do believe we will! 1 and half hour later after having sat at the desk top I realise this was not a good idea. So far i have been sitting or laying in bed, or sitting on my chaise lounge bit of the sofa with a wander round the house every now and then. Oh No, sitting at the computer is too much gravity for my internals. Oh well, leave it for now then. And oooohhhh my bladder is in discomfort! Aaarrggghhhh…… No I’m in discomfort! All of me! More paracetamol after an evening of more breaking bad box set. Need to sleep…
7th March 2015: Day 10 The Womb’s ‘lost’ long live the story
I blogged it, last night, the first couple of days, for my friends who want to know and anyone who might be interested! ‘How do I feel?’ I’m asked. Don’t know really. I kind of don’t really care if people in general don’t like it, are squeamish or it’s all a bit TMI or boring. All the time people are sending me shite that I would not choose to read, games I don’t want to play, things I don’t want to share, so why ask me!!? Does that mean I hate social media. NOT ONE BIT. I love the fact that despite the little interruptions, if you could call them that, I get to see and communicate with my vast and wonderful family and collections of friends all over. In ways unthinkable years ago.Onto more important issues – hubby brought me up a toasted cinnamon and raisin bagel covered in crunchy peanut butter and Marmite. Mmm…. Well it is the weekend and I’m hardly going to be cutting shapes in town! Maybe weetabix and prunes for lunch? … Or maybe not! I had hubby’s home made mushroom soup and cranberry bread.
So little sis came over and helped (well actually not helped as that implies i did something!) to make bed up for my friend who is coming on Monday for a couple of nights while hubby is away at a conf. Then she helped me with the shower – I still need a bit of help, largely due to the fact I have a cast on my arm (roll on 26th March and when it comes off!). So standing naked as the day I was born while she puts it on – again. How many people will see me like this!! As once it’s on I can’t really do anything like take of clothes etc… I’m getting used to washing hair with one hand! Still all done and off she goes. ‘See you next week’ she calls up, ‘ta da’ I say as she leaves.
More of the same – still discomfort and more paracetamol. But the sun is shining and I wish I could be outside. Hubby says ‘I know you can’t really walk anywhere, but how about a spin out to Dedham with the roof down’. ‘Yes, great’ I answer with glee. Alas after 10 mins in the car and silence from me (I’m clinging on, not because he is going fast, but because I am really not okay with this), he asks ‘everything okay?’ ‘No’ I say miserably ‘take me home’. He of course does so and on route gets petrol. We get home and he says ‘sorry, I thought it would be a good idea’. I respond quickly ‘don’t be silly it was, but I guess too soon’. The vibrations of the road were too much to take.’ Oh well, I’ve learned in the last 24 hours I can’t sit at desk for long at all, and can’t go out I the car yet. Patience is needed. I go back to bed and sleep till darkness arrives. Later on I enjoy dinner and The Voice. But sleep tonight took an age to come. It’s a quandary as I feel I need sleep to recover, but then can’t get off to sleep.
8th March 2015: Day 11 Sunday and International Woman’s Day
Pondering last nights dinner it was fab – Saturday night so why not, go the whole nine yards! It was roast chicken, roast potatoes and (according to hubby) pimped up Waldorf salad! Superb. Then lemon tart with soya ice cream. Here’s the thing, hubby is a fantastic chef. This has not changed since my wrist break or op! Now I’ve said ‘small portions please, I’m not doing anything!’ He loves cooking for me though. We are now 11 days post op and more days since I’ve been to the gym due to the week before being immobile because of wrist break. Oh what’s a girl to do! It’s not like he’s a ‘fat feeder’!! But I really really miss moving and moving fast. The last two days though have made me realise it’ll be a while before I’m working out. I knew that, but it was abstract. I hadn’t thought what that really meant. It’s hit home though – the reality is I ain’t gonna be working out for a while! Working out!? Just a walk would be good! Back to real life and on my bed, having eaten more weetabix and prunes I awoke in pain. It’s hard as I so want to NOT be in pain, obviously! More paracetamol – I hate taking them but need to just now.
So it’s International Woman’s Day and I’m lying in bed lacking a womb. I remember back to when I shaved my head bald over 20 years ago for charity (yes charity mate), and it was quite long! People asked me (female friends) if I felt I had lost my femininity or feeling like a woman. ‘No not at all’ I actually felt free! Not sure what from, but it didn’t cause me any angst about my female identity. (I did hate the skinhead phase though on growing it out, largely because my clothes looked odd). I found the question odd as I was so much more than my hair. How and why would that define me (okay let’s not get into Mead and Cooley here! I know our appearance as a sociologist is critical in identity formation). But my womb? Well unlike my hair, it won’t grow back, protect a baby, be visible in its absence to others. But I know it’s gone – forever. Not sure I’m really ready to have that conversation with myself just yet as it’s tied into the twin miscarriage, fertility lack (or sub fertility as it was so compassionately called) and I need to heal physically before I go down that route! But I did think it fitting to begin the conversation on international woman’s day. This is because I am now lacking the single most obvious thing (internally) that makes me a woman (the ability to produce children biologically). I don’t actually believe this however is the case of course, nevertheless I can’t take away the fact that the truth is I no longer have a womb. Despite my age at 46 (I know crazy eh?) I will never again hope I am pregnant on a monthly basis or get terribly disappointed when not (or worse still feel exhausted yet again as another tale waggler meets egg, parties, has a one night stand and finds they really aren’t compatible). But I digress? All of this, has an impact upon my life and my work. Women are disadvantaged in that way. I have had to suffer with fractures to my months for years, then the op. Bang. Stop work. I can’t even sit at my desk for long (must remember only 11 days post op!). But in the grand scheme it is a big deal when thinking about work and equality. For all women. Childbearing and gynaecological issues. Still. just on little old me, for now I need to get back to me, or discover new me’s. I then wonder if I can take a short walk out today – I haven’t had an Americano for nearly two weeks!!
The Tale Begins
I don’t really know what to do with my stuff! So if one person reads it and finds it remotely helpful or interesting then job done. I have in the past written academically/autobiographically about miscarriage and the writing process as a sociologist (as me?) helped I think. As a blog you can choose or choose not to read it so really, it’s a record. I did search, okay not relentlessly, but the ones I found were horror stories. Of course on the edge of such a huge deal, physically and emotionally, maybe it’s better not to know, but I couldn’t help myself! So read on, don’t read on. It’s not an academic piece, it’s just me, my thoughts and experiences. I have no idea if i will be able to add to this post yet, as i’m a bit tech rubbish! So we shall see… Just a note too, in hospital Day 1 is the day after the op, they don’t count that day. It is somehow lost, gone, and a big fat 0. I don’t really mind that, as Day 1 is the beginning of the next phase, whatever that is! I can’t pretend that this will last, or not last, who knows what’s around the corner, I know I don’t!
24th February 2015: Day – 0 Hyster-Eve
Crazy timing I know, but I broke my wrist walking in to work just over a week ago now. Forearm, wrist and hand in cast! How is this going to impact my major op? I had arranged all teaching/work for coming 8 weeks or so, so practically prepared for this. Emotionally prepared – maybe?! Nevertheless I didn’t want a wrist break to get in the way. But the anesthetist wanted to see me to ‘assess any risks’. So 5:30 pm the night before the big day, I still didn’t know 100% if I was going to have my womb taken out!
In the ward room, my older sister and I waited for him to assess. Wasn’t so much of an assessment but a pre op question time. Saved him doing it the morning I guess. So off he went and in came nurse with the Clexane injection jabbed into my tummy. ‘Grab some fatty bit’ she said, there wasn’t an awful lot, but once she told me to sit down a little roll appeared. ‘Ouch’. Then my sister drove me home (would’ve driven myself of course had I not got a cast on!). And then the reality began to hit. Not that I hadn’t thought about this op, death and all that. But I was going in at 7:20 am that very next morning 25.02.15 – the day I ‘lost’ my womb.
My husband and daughter came back into the house. He’d had to take her to an appointment so couldn’t come to hospital with me. We ate dinner, watched TV and waited. I packed stuff – with one hand as the other was immobile and in a cast, and sent hubby my almost finished book manuscript by email. I didn’t want it gone forever. I mean, if I left this earth while in theatre – not the play I wanted to star in! He wasn’t terribly amused at the incoming mail.
My adult daughter, intellectually disabled and interdependent, living at home with me and her step father. What if I die on the table. I had read the bumph they sent home only two days ago (I had been preoccupied with wrist and work). It scared the heck out of me! All those stats about what could happen. I could even die! I mean i’m a Holby City fan, (had avidly watched ER and even Chicago Hope back in the day!) which probably didn’t help my already creative and vivid imagination). But even if I don’t die, I could lose my bowels/bladder use, get at embolism (although the Clexane was to prevent this), nerve damage… all sorts of horrors await, so it seemed. At best I was going to be in pain, swollen, numb, windy, nauseous and emotional. I had to stay alive for my daughter. She had so many more of her own health appointments coming up. But the ridiculous heightened emotion of this scene was too much to take.
Hubby and daughter made some really lovely gesture (a gift). I rebuked it. It wasn’t the right colour, texture and so on. Me unreasonable? Totally. My husband lost the plot – him a little OTT? – yes. ‘I can’t do anything right’ he shouted and so it goes on. We three sit in silence, watching TV, but not really doing so. I stew! ‘I’m going to be lying on the table and I might not be back’ I scream. I hurl this at hubby and add ‘if we don’t sort this out and I come round, I don’t think there’s any coming back from this’ I announce. We rarely argue, so not our usual evening in, but then this was so far from ordinary. I stormed into the bedroom slamming the door. Eventually he followed – I apologised for being horrible about the gift. And told him ‘I was so petrified’. He looked more frightened than I’ve ever seen him. ‘I’m scared too’ he admitted. We called my daughter in, told her everything was going to be okay and we had a three way hug. We went back to watch TV. This time we did for a bit. Bedtime came, sleep arrived a little later, and then BANG alarm woke us at 6 am. Today is the day!
25th February 2015: Day 0 – The day I ‘lost’ my womb.
I lay in bed listening to hubby take a shower. No point in me getting up, can’t eat or drink anything now as my fasting began last night. Eventually I get up and begin the new rigmarole of showering one armed (it – my broken wrist and cast – even has its own shower ‘cap’. We get into the car and begin the short journey to where the fate of my womb – ‘wombs end’ is apparent. It’s too weird and frightening, and i’m not remotely thinking about the consequences for my womb yet, but just for me – as a whole. I’m not terribly chatty. It’s early and the traffic is good.
On arrival we are asked to sit and wait. Along comes someone – not sure of her exact role, but a little like a concierge or even front of house boss. Hubby pulls my little suitcase, this little one no longer reminding me of The Apprentice with candidates and their little suitcases awaiting their entrepreneurial fate. No business deal for me but just a pact with a future unknown and a chat with God.
I’m shown to ‘my room’. It’s all quite nice with the TV and en-suite shower! Will I even use that I ponder. I turn on Good Morning Britain!. Ah, something a little familiar – Ben Sheppard and Kate Garroway on a sofa, or something like that! In comes a nurse. She labels me up with my red wrist band (no codeine or ibuprofen) ‘what the heck was going to take away the pain post op’ I thought, I mean paracetamol probably wasn’t going to cut it with a wound half way across my abdomen and my internals stitched up! She then hands me a little pot with three tablets in it. ‘Take these dear’. ‘What are they?’ I ask. ‘Oh just something to take away the pain’! I obediently poured all three into my mouth and took a sip of water (all I was allowed) and thought ‘surely I don’t need pain relief I’m having a general anesthetic!’ Still what do I know? I ask the nurse ‘what time am I going down?’ and she replied saying ‘your consultant has just one little op before you, but don’t worry as he’ll be into see you soon for a pre op chat and consent’. Consent, ‘gulp’ to what. MY LIFE, MY WOMB… She fits me for my anti clotting stockings, oh yes, sex on legs. Now as she pulls them over my toes, ankles and calves i’m almost ready! We wait and wait, watching irrelevant TV. Actually not that long really, but I was sure glad it wasn’t a late morning slot. After a little while my consultant walks in.
A well dressed, well groomed ageing man. And on the occasions I’ve seen him in the past few months always donning a rather dapper tie. Today was no different. He is so calming and kindly and gentle. I’ve seen a lot of different consultants in the past 6 months with my daughter and myself and not all have his gentle manner. I like him, despite feeling childlike in his presence. Better infantile and slightly helpless, than an angry teen! I sign away my life, or at least my ovaries if anything untoward is discovered in that area when opened up. Otherwise they would survive the internal cull. He touched my hand and looked on like a father. ‘You’ll be fine, it will all be over soon and no more disruptions to your life’, meaning the dreaded heavy periods and so on. In my head I screamed ‘give me the heavy period over this – what if I die?! I’m not ready’.
The next time I would see him would be just as I’m about to fall into the deepest of sleeps. Goodbye holder of my life, my womb, my past, my future.
Back in the room and Lorraine Kelly is on the TV. I get into my gown, naked beneath. So glad the period didn’t come early! Then in walks a nurse and a porter (I think). I get off the bed, but no I am told to remain there on this bed. They roll me over one way and the other way while they put a thick blue rubber or plastic sheet thing on my bed. They then go to push me away. Horror arrives. ‘I’m going now? In this bed?’ ‘Yes’ the nurse calmly says, and then to my husband she whispers ‘she’ll be back in a couple of hours or so, don’t worry’. Don’t worry!! I look at him our eyes meet with fear and love. He squeezes my hand, well the fingers on my casted wrist. ‘See you soon’ he squeezes out through this anxiety strained vocal chords.
I begin the last trip as my self as it is, down the corridor in my bed. My womb’s final journey. I arrive in a small room. Through the doors I see a hustle and bustle of people in the theatre where I am to play the lead. Actually is it me, the surgeon or the anaesthetist who leads this scene?! The anaesthetist arrives by my side all in green – I think? I really really have to work hard not to break down. He says, I vaguely remember, ‘hello, how you feeling’? ‘Not great, I’m very scared to be honest’ I quiver. I see my consultant who is calming and the anaesthetist puts a cannula in my hand. I have a word with God. He knows, but I remind him I have to look after my daughter so please don’t take me yet! The liquid is pushed in the needle on the back of my hand and runs through my veins. I’m away – nothing. No birds or butterflies.
Moments later – in my memory time, not real time, I’m back in my hospital room and hubby looks on. Relief in his eyes. Love in his heart. I’m awake! Alive. I made it through the dark unknown journey. On the way I lost my womb, but for now I have my life.
Wired up to a machine on IV fluid drip, morphine pump and in some discomfort, but alive and in the room. Hallelujah! It was not yet the afternoon. And on quick inspection I didn’t seem to have a catheter! This pleased me, as one less thing to deal with. But how and when would I pee! Not for a while yet it seems. The rest of the day was observations from the nurses and sips of water. Every now and then I pushed the morphine button. Funny really I felt relatively normal! No weirdness, paranoia or such like – not like my Dad or younger Sister on their coming round from anaesthetics! One who thought the patient opposite had died and the consultant was keeping his (my fathers) impending death from him and the other who awoke thinking her student had been murdered. Nope nothing as exciting or as frightening as that. But each to their own I suppose. I just chatted on and off to hubby, daughter, Mum and sipped water. Strange really. By late afternoon I wanted to pee. Hubby went off and the nurse and I attempted the trip (a few steps) to my commode chair.
I got up, felt very nauseous. Sat on the chair – no wee but vomit. Projectile water gush came out of nowhere. Quickly I reached out for the cardboard sick pot. As that filled up and spilled over the patient nurse gave me another. That filled, then another. No fluid though from my stubborn bladder. Could have been a comedy scene for onlookers, but not for me. An unsuccessful trip that just induced vomit and further discomfort in my abdomen. But then had to remember this was only a few hours after the op! Hubby came back and I told him of the unsuccessful trip to the commode and the puke jet! My daughter, hubby and mum around my bed. I’m there too! But as the day moves from dusk to dark the next phase is upon us. Still pushing my morphine pump, loved ones leave for the night. Drugs do their round, nurses attentive to my needs. We try again to pee. I’m helped out of bed again, sit on the commode again, feel nauseous again and vomit again. But this time there is nothing left after the water fountain. Yellow bile pushes it’s way forward, stripping my sensitive gullet. Still no pee, more discomfort in the bladder region.
Once back in bed the nurse scans my bladder. ‘No need for a catheter yet as you don’t have much urine in there.’ ‘Phew that’s a relief’ I whisper while wincing. The nurse came back to administer some anti sickness drug to my cannula. By midnight I called the nurse again, in pain we made it to the toilet and I peed! Just a little but this meant my bladder was working – I do a little dance in my head – there wouldn’t be any other type of dancing for a while. But then every hour and a half I was calling the nurses to get up to pee as I could not make those few steps alone as I was tied to the drug machine. I continued to work my bladder.
26th February 2015: Day 1 – The full day after
At 5am I pushed the morphine button for the last time. I didn’t know then it would be the last time, but at 7am my cup of tea came round. Two sips and nausea was apparent. I left it, and decided to see if I could manage as felt this morphine might be the sick inducing culprit. Time passes slowly. Breakfast arrives at about 8am. I ate two triangles of cold toast and Marmite. I struggled a bit largely because not only am I unable lift my body up due to my internal and external wounds I can’t use my left hand properly due to the wrist break and cast. What a state! Marmite made it onto my bed sheet. Still, a dry salty taste burst was a welcome sensation. I saw my charming consultant and he told me it was all very straightforward – ovaries and fallopian tubes fine and in tact. But it might be best to come off the morphine as seems to make me sick. ‘I had already decided that’ I said to myself. Okay so onto rectal voltarol, (Sounds like something from Harry Potter) because we had exhausted any other painkillers and paracetamol just weren’t enough. Charming.
Hubby came with a lovely flask of tea. Mmm…. He had to leave and my Dad and his wife arrived. Dad was surprised at how ‘normal’ and chirpy I seemed. Time passes by. Out with Dad and in with Mum and older Sister. I now have a bleed. I look down and with horror see blood through my gown – it was in part soaked! No panic from the nurse as I called. She changed my dressing and I see the train track staples across my lower abdomen for the first time. They put a clean more substantial dressing on. Mum and sister go and hubby is sorting out dinner for daughter before they both come in later. I’m alone.
Door shut. Darkness covers me, envelopes me like a well fitting glove. But this is no comfort. No warmth from this glove. I cry, sob. That kind of sobbing where you need to take a breath. I call hubby on the phone in tears. Sobbing. He panics telling me to call the nurse. I tell him not to bring daughter in. ‘Tell her I’m too tired’ I sob. I press my call button and put down the phone. A wonderful nurse comes in. I tell her to close the door as the lady opposite seems to be staring at me and my tears. She pushes the door too, sits on my bed while I cry and tells me ‘you’ve had a major gyn op so hormones will be all over the place and you have post op blues. Give yourself a break, you only had it done yesterday’. I simper teary ‘I’m not ready to go home tomorrow’. I calm down as she strokes my hand. She goes and hubby comes with a flask of soya hot chocolate. Just the job. Unfortunately I develop a little irritating cough. (probably due to the thing down the throat during surgery). This is not good for my internal or external stitches. Hubby left, I was alone. But now I was off all IV it meant I was at least able to get myself to the toilet, which I did.
The wind agony began, the coughing was painful and I felt bunged up but no bowel movement appeared – straining was not an option. Didn’t want my innards falling out! The noise from the other rooms, the irritating (and pain inducing) cough and general blues meant by the morning I was ready to get the heck out of there! Dawn arrives and so does day 2 post op. GET ME OUT OF HERE!
Had a crap day on Sunday, flung back into a space in which I couldn’t quite believe that LB died [he died?] the way he did. I think about him pretty much every waking moment but the way in which he died is (necessarily) pushed to the margins most of the time.
Later this afternoon I’ve got a call ‘booked’ with the Sloven Board Chair, Simon Waugh, to discuss the answers he eventually sent in response to our questions around Sloven actions to LB’s death. These answers pretty much say nothing. Other than ‘Er, it wasn’t us guv’ or ‘It was the non clinical staff’.
I don’t want to talk to him. Like I don’t want to chase up the Central Southern NHS Commissioning Support Unit to ask why 6 months of records were missing from my access to record request last week. (No answer yet). Like I…
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I didn’t set up a just giving page for running, for any charity, as I really didn’t know if I would run the 10k. I was due to run the Bupa 10k in May this year, and my health shite meant that I couldn’t train, and then run. I had a second lot of biopsies in April while having another endoscopy. The pain I have been in over the past 18 months has been rubbish. I now have Barrett’s Oesophagus, (as a result of over production of acid) and functional dyspepsia (no cancer found – yet – phew!) and am seeing the other end person in August for investigation! Still, I am much better, with a few drugs (not as many as I was on 8 months ago – they made me more ill!), but if I don’t drink too much (I haven’t drank wine in over 6 months, but the gin, in moderation seems to be okay!). As the song goes, the drugs do work (well these little ones do for now). I can’t eat tomatoes – now this is tragic!! Not too many chilies, well none really, (that’s a travesty, seeing as I used to eat Thai, Indian, Mexican and so on). But I am not in nearly as much pain. So this means I have been able to train over the past couple of months. I ran for Mencap last year, and I reached my conservative financial target. But as I say, I didn’t set up anything this year. If I have a flare up (in the stomach/oesophagus region) then it’s no running as the pain, and discomfort takes me out for about a week to 10 days. But here I am, 5 whole days to go, and I might actually be doing it – I’m still nervous about a flare up, but today, I bit the bullet and ordered a couple of running vests for me and Eamonn (he’s running too, but at my pace!). Connor’s black and white photo, etc… and #justiceforLB on there too. So even if just one person contacts the page as a result then I have done something. A good friend asked me this weekend, are you going for a time? Mmm….. I would like to make it round, and then do it without stopping. We shall see how all of this pans out. I really really hope I can do it. SO if you happen to be in London, and see me fly, no stagger by, then shout justiceforlb, go Chrissie!!! Go Eamonn…… I will, I hope post a pic, when I get the t-shirt if I get it in time!!!
I’ve been thinking about LB and the imminent first year anniversary of his death. I have also been trying to write in a small window before the final exam boards next week. My book and a bid. The bid went by the wayside as I didn’t seem able to make the leap from what I was writing about to policy and gave up – for the time being. I said to my research officer,’but what I’m talking about is so abstract’, he agreed that maybe this particular call is not for my work, just now. But he did say that ‘not everyone writes for immediate action. We also need the ideas and philosophical work that lays the foundation for future polices and thinking’. That was a nice thing to say. I’m not too sure he’s talking about me, I think! Still, I take a look at my newly purchased book, the one with LBs colorful abstract art work postcard by Rebecca Mallett and Katherine Runswick-Cole and see that there’s a ton of stuff on action which is fab. My book won’t have that. FUCKster (!!!) it will have tons of other stuff, stuff that will make people think I hope! Stuff that brings together areas around intellectual disability and being human, stuff about relationships, and media and family and education. Stuff that I want to shout about – and no it won’t have advocacy in it, but look at everything that Sara and justiceforLB is doing, which is fab, but I guess we can’t all do that. I can offer something here, like I did with my seminar, like I hope to with my run, but I can also offer a big fat theory (not saying that it will do anything!!), heck worth a go! So the chapter I have been working over the past few days is one currently called ‘Re-humanizing Education’. All of my chapters I feel are pertinent to LB, my daughter and all other Dudes and Dude-ettes, but I’ve been pondering over this currently shockingly uncreative curriculum, and looking at Connor’s creative side, it just compounds my thoughts. So I thought I would share some tiny bit of what I am drafting… The quotes are from a past government education civil servant!
So think about all the Dudes and Dude-ettes as you read this, and how shitty the system is in trying to educate our kids! Education is interpreted in different ways currently, and not at all in a way that is helpful or meaningful for intellectually disabled children. As we might see here from a B****** of course I can’t say that in the book, but I can here LOL!
“I’m quite clear that there’s a lot more to do but I don’t think the government and I can be too apologetic for focussing on results where there is sufficient evidence to suggest that we don’t have enough of our children reaching their potential. This isn’t an issue of children with learning potential, but we have children whose attainment is clearly below and that means improving the school system. […] There is a reconciliation and I’m not picking an argument, I think attainment is everything and I think at the same time, mmm, attainment isn’t automatically 5 A* – C (GCSEs) but it could be 10 A* – C, equally it could be 10 at D could be an achievement. I think that attainment is important and if at the end of Key Stage 4, mmm, teachers could say we really have pushed every one of these children on and they’ve all achieved something of excellence. And that’s actually the reason why the government has invested in baseline assessments in all the key stages so you can see how the child is doing”.
As I say this was from an interview with a senior civil servant in the then, Department for Education and Skills (DfES). In the same interview he had already said to me,
“We shouldn’t be writing children off based on the fact that they can’t get 5 A* to C but need to think more broadly about the areas where they can get [pause]. We have to value the children for where they are no matter what they achieve: the 10% of children who do not reach level 4 at Key stage 2 or the significant number of children who won’t get 5 A* – C at GCSE […] The ultimate goal that this government has is that we will create a measure of schools value added, to the extent which they help the child move from the level of knowledge that they come into school with and to where they get out, and that hopefully will take a bit of the heat of the league tables which have had an adverse effect but we’re talking about children who are always going to be regarded as below what is regarded as age related”.
I remember vividly walking away from this interview, feeling utterly disappointed. The lead up was exciting; after all I had managed to gain access to a senior official in government, but naively thought he would actually open up to me. The narrative I gained from this interview however did not deviate too far from policy directives. The rhetoric around ‘we shouldn’t be writing children off’ is clear to me. Research suggests that we are still writing off a huge number of children and not just those with intellectual impairments. On reflection there is probably more to see in the excerpt above than I might have originally thought. What is absolutely clear is that the assessment of children from a young age is about how they achieve both in relation to summative learning goals (for example, numeracy and literacy targets), and success relative to their peers locally and nationally. We see this in the tabling of school performance. This is not news. But what is evident is that if education remains so heavily weighted towards particular ways of doing and performing in examinations, lack of creative thought and innovative ways of knowing, then intellectually disabled children, especially those who are unable to read and write, have limited communication and so on, will not be a part of this education experience in any meaningful way, ever. This is inhumane.
So I think about this further, what can we do…. I’m not sure I have all the answers and have a little way to go philosophically, but DON’T WRITE OUR CHILDREN OFF BECAUSE THEY CANT READ AND WRITE ASSHOLES! YOU CHANGE THE SYSTEM, DO NOT TRY TO SQEEZE US IN OR CHUCK US OUT…..