More than just a bag lady

NB x

Some of you may have heard me talk or write about Torra lock. This is a medicine that you put down the line to reduce the susceptiblity to line infections. Due to NHS beurocracy you have to have 4 line infections before you are allowed the medication. And lucky ole me, this infection was my 4th.  The nutrition nurse came down to show me how to do it and to make sure I get the first dose today (you have to have 2 doses before you can be discharged).  Within seconds of it going into my lovely new Hickman line my legs started to tingle and feel funny. When I said that to the nurse she laid me down, put the oxygen mask on me and ran off. The tingling continued and then the itching started. Just a little tickle of an itch initially but then it built up until I scratched and scratched until it was almost bleeding.  The nurse came back with Dr7 and Dr8, who were luckily still on the ward. They gave me some steroids and piriton and crossed the torra lock off my drug chart. Appare...

Look what I got this morning! My new Hickman line!!! Yay! It's on my left side because the scar tissue on the right was too bad .  Dr7 was worried that I would now have scars on both sides of my chest  but to be honest I couldn't care less as long as one went in.  Apparently Dr7 told them yesterday afternoon that I wouldn't be having my line as there had been some emergencies that needed doing as a priority. Why did no one think to tell me then? Typical NHS communication.  I will need to hook up tonight to check that it's working and if there's no problems I will go home tomorrow. I'm so excited. I will get to put Big Fella to bed the night before his birthday, wrap his presents with Hubby, hang the birthday banners and watch him sleeping, wondering how on earth my baby boy got so big. All of these things I've missed out on the last 2 years. But not this year. I can't wait.  NB x

I was told that I would be having my line inserted today. I couldn't believe it. Apparently Dr7 was doing an extra theatre list as quite a few people needed lines and I was on the list.  I didn't quite believe it but a little while later one of the nutrition nurses came to see me bearing gifts... This box contains a brand new, shiny, infection free Hickman line. So if they've given me the line then I must be going down.  I still didn't want to get my hopes up because I had heard from one of the nurses that there were 4 patients needing lines but only time for 3 to get done. All the ladies in the bay were certain that I would be one of the 3 given that I had the line at the bottom of the bed and the fact that Dr7 knew it was Big Fellas birthday this weekend. He knew I was desperate to get home as I had spent the last 2 of his birthdays in hospital.  Just before 7pm I called my parents to take my mind off the fact that time was ticking on and there was no sign of me being...

No prizes for guessing what I had done today. The title kinda gives it away. Being woken up with the words "morning. Time for your enema" is something you just don't want to hear, even from a sweet phillipino nurse.  So at 7am this morning I was having my bottom pumped full of goodness only knows what to make sure I was empty inside ready for my photographs. I would liken it to the way you get the kids ready for school photo day- having a good wash, tidying your hair, making sure you're clean- but that would just be wrong. Oops- did it anyway.  So after the contents of my pouch and rectum are evacuated in record time the porter comes and takes me down to the Endoscopy suite. I've been here before so know the drill. Check you're you,date of birth and any allergies. Tell you all the things that might go wrong and then get you to sign your life away. Literally.  That's then consent procedure done and then you're wheeled into one of many endoscopy rooms, n...

One of my friends had taken to calling me Pollyanna after the character in the books and the Disney film (I hadn't heard of it either- thank goodness for Google) Basically the little girl, Pollyanna, looks for the good in everything. And at the moment I'm trying to do the same because if I didn't I think I would just have some sort of breakdown! There have been parts of today that have been totally and utterly shit. No other word for it. And I wonder how on earth me and hubby will cope over the next week or 2. Just when you think it couldn't get any worse, well yes it bloody does.  So in true Pollyanna style and I guess like the people that do 100 days ofhappiness photos on Facebook, this was basically the only good thing to happen today.  They had my favourite hospital dinner of cheese tortellini and garlic bread on the menu tonight and then Kitty dropped in with a Tupperware box containing homemade scones. And  she brought jam.  So there you go. That's it. I enjoy...

The lady opposite me has had an op and has a Stoma for the first time. Listening to the nurse explain how to manage the Stoma and bag is taking me back to when I had my Stoma in 2009.  I remember the first time the Stoma nurse came to change the bag and I just sat and cried. She wanted me to try and help but I just couldn't. I couldn't move my hands. It was as if I was paralysed. I looked down to see this thing  sticking out my stomach wall. This pink, hosepipe looking thing that moved about on it's own and where poo came out. How would I cope with it. I was 26 and it felt like my life was over.  I hear the lady opposite ask if she can have a shower with the bag on. Seems like a daft question but when you wake up with a Stoma you have all these questions going round and round your head. I remember asking my Stoma nurse if I could still use tampons. She laughed, though not at  me, and told me kindly that they hadn't touched that hole !  A few days after my surge...

After yesterday's heart break I'm pleased to report that Big Fella is much happier today. Thanks mainly to the fact that Dr7 had said I will be allowed day release for his birthday.  It looks like I'm going to be in hospital for another week or two because I need a new Hickman line putting in and there's a massive waiting list. Normally you're not allowed out of hospital with a central line but Dr7 has said he will write it in the notes and then write it again to make sure everyone knows he's happy for me to have day release. Just got to be careful with it that's all.  So I messaged Big Fella and hubby messaged me to say that Big Fella was jumping around the room because he was so excited. Happy boy = happy mummy.  This evening as I was face timing the kids, listening to Big Fella read his school book and Big Girl do her flute practice, a girl came to the end of my bed and asked if it was me that had been talking to her brother.  I tentatively replied yes an...

The kids came to see me today which was lovely. We had a little picnic outside despite the fact that my whole body felt as though it was made of lead and hurt from top to toe.  During the picnic I had needed the loo so shuffled slowly there with the kids. "No need to come with me" I told Hubby "of course I will be ok". But I wasn't.  After being on the loo I felt dizzy and stumbled when I walked. I sat in the restaurant while the kids went to fetch hubby. When he arrived I stood up to walk but after a few steps the room started to spin, everything seemed to go black and  my legs went from under me.  As I lay on the floor I could hear the kids shouting "Mum! Mum! Are you ok mum?" And I lay there in my husbands arms feeling helpless and guilty for what my kids had witnessed yet again.  I was taken back to bed, had a little bit more time with hubby and the kids and then it was time for them to go. A little while later the weekend doctor came to see me and...

I have pulled my curtains round today and I'm not opening them. I can't bear to have the old woman diagonally opposite tell me how hard she's had it, how unwell she's been and how she's so  much iller than everyone else. (I don't think iller is a real word, but I don't care, it sounds right).  You see she was in hospital for ages last time. All 3 weeks of it. *Rolls eyes* She's one of those people that goes on and on and on. If I hear her say about how skinny she's got because she's been ill one more time...she has said it about 10 times today. And she's not even  that  skinny.  Everyone in here has a story  to tell but we don't always tell it 24 hours a day (unless like me you blog about it 24 hours a day 😉). It's just sometimes you have to know when to be quiet and let someone else talk and this woman doesn't. She's been there, done that and knows better than everyone.  She also moans about the food (it's disgusting) th...

After the 'excitement' of Monday, Tuesday was a bit quieter. I was kicked out of the side room in the afternoon into A bay. I didn't really mind because although it's nice to have your own room and loo I much prefer being with other people and having a chat. There's a sense of comradery in a hospital bay and everyone keeps an eye out for each other.  In the morning they gave me antibiotics into my Hickman line and it gave me the rigors. These are when you feel as though you're freezing cold, you shake, teeth chatter etc. Doesn't sound too bad?? It's horrible. Your whole body is convulsing almost and you can't get warm even though quite often you have a temperature of 38 degrees plus. Your muscles ache from the cramping and spasming- you feel like you've just run 10km! This lasted an hour and afterwards I was completely exhausted. I slept on and off all day as I hadn't slept much Sunday or Monday night. I also realised that the wifi on the war...

In the early hours of Monday morning I woke up shaking, teeth chattering and with my whole body hurting like hell. I woke hubby up and sent him downstairs to make a hot water bottle because despite being hot I felt freezing cold.  Hubby told me to switch off my IV fluids just incase it was the start of an infection and after about 30 mins of convulsing I fell asleep. I woke up a few hours later and felt a bit better, but a bit dry, so I started the fluids again. Big mistake . Within hours I was unable to get out of bed, felt sick and like the worst case of flu had hit me. Hubby got the kids ready for school and off he went with me saying I 'was ok, don't worry about me'. But I could feel my temperature rising so I rang one of my very good friends and asked her to being her thermometer over as mine was broken.  Hubby had left a key out for her so I didn't have to get out of bed. I really wish that we had installed the key hider thing that I wanted to do last year. You f...

It must have been around the time of Natalie's diagnosis that I met her. We were both volunteering for the local branch of our NCT and as our children were the same age she introduced me to her coffee group. I remember her telling a mutual friend about her colitis. I'd never heard of it before and had no idea. Every time I saw Natalie she looked fab, had recently lost lots of weight and was so positive and happy. I had no idea. And then she went into hospital as she was so poorly and her bowel perforated while she was there.   We are both very close in age and have children of a similar ages and I couldn't help but think how I would cope under similar circumstances. I went to visit her after the operation in HDU and almost immediately she showed me her stoma, saying she just wanted to show people, get the questions out of the way. Through the next weeks I helped her plan the final bits of her wedding from her hospital bed and then watched her marry her wonde...

Hi! My name is Sue and I met Natalie in the Intestinal Failure Unit at St Marks this year. I have had Crohns since 1986. Crohns is similar to Ulcerative Collitis (UC) but can affect any part of your gut, from your mouth to your bottom, wheras UC only affects the large bowel. I had my first operation to remove all of my small bowel in 1987 and I was put on steroids. Because of being on huge doses of steriods for such long periods of time I developed Addisons. The steriods destroyed my adrenal glands which mean that my body does not produce adrenalin. This can be really dangerous and I have to carry an injection with me at all time. If I got into an accident I could go into a coma. The injection would just need to be injected into my leg and my husband is also trained to do it incase I am ever too unwell to do it myself. I had to use it when my Mum died. I had to have my second operation in 2000 and ended up with a stoma and a fistula. A fistual is an extra opening from the bowel t...

I should have been writing this in Nottingham, lying in my childhood bedroom. Instead I'm at home on my sofa while Big Girl watches TV in my bedroom.  I didn't make it to Nottingham this weekend because I've had a s&d bug plus the heat has killed me. I made the mistake of drinking loads of water (which is what 'normal' people do when it's hot) which just passed straight through me. My poor bowel didn't know what was happening. Pint after pint of water went in- and out.  So I switched to St Marks mix (a horrible mix of salts and sugar) which helps to keep the electrolytes balanced. Since drinking that, and not throwing up any more, I've felt a lot better.  So instead of cuddles with my Dad this morning he's had to make do with a phone call. But he told me he would prefer for me to stay at home than end up in hospital.  As it's Father's Day I would like to introduce you to my Da. (That's not a typo- that's what I call him) As you mi...

Hi I’m Karen and I work with Natalie, If I was going to put a heading to this blog it would be “Au Pair, Really!” and to explain I would have to go back to when I first met Natalie. I don’t know if she has ever mentioned that she comes from north of Watford and therefore has this strange way of pronouncing her vowels, that is what I remember of the “new girl” that joined four years ago, and that she spoke very loudly (sorry Nat but you do!) After a few months we sat opposite each other and found that even though there is a huge age gap between us, we just somehow clicked. I don’t know why, perhaps it’s because we refused to have one of those desk dividers between us so we could talk and throw things at each other, and occasionally work of course. During our “chats” as we now call them, she told me that after big boy was born she had an au pair. I was shocked, why would she need an au pair when she didn't work? One day when we had been joking around I suddenly said “...

Hello! For those of you who don't know me, I'm Kelly... (Sporting a pout for Red Lipstick day- a fundraising/awareness day for St Marks foundation) ...the little sister - the Aunty, the Communion hairdresser, the birthday party executor, the wedding finaliser, the sensitive one, the one who knows what it's like to get the calls & texts that her sister is in hospital again, the one who's heart skips a beat at any missed call from my parents in case it's bad news, the one who knows what it's like to have nearly lost her sister more times than I'd like to count... The healthy one. The healthy one - You have no idea how guilty that makes me feel, how I wish that I could take this awful illness away from my sister and even wish that it was me and not her! She has two beautiful children who need their Mum and who don't deserve to have to accept the things they do as normal; if I could do anything to give them back their Mum, even if it meant be...