More than just a bag lady

I haven't posted a blog for a while and one of the reasons is because the blogger app I use on my phone isn't working. It lets me in and then after 4 or 5 seconds it shuts down. I've tried deleting it and reloading it but the same thing still happened, time and time again. Because I write 99% of all my blog posts on my phone it's obviously made it impossible for me to write one. This one has been written on my iPad where the app seems to be working fine- touch wood. I guess if you're able to read this then it has worked and if I've typed this all for it to disappear I will be cursing like I have every time I've tried to use my phone app! Anyway, by my reckoning it's been about 7 weeks or maybe even longer since I last wrote. Lots has happened since then and I will try my best to update you without this turning into an essay! One of the reasons I like to use my phone is because I can easily upload any photos that I've taken or saved from the tinterweb

I know it sounds mad but sometimes I actually enjoy it in hospital. Of course I don't like being more ill than usual but it's a chance for me to get a bloody rest. When I woke up at home last Thursday nobody brought me breakfast in bed or offered to put fresh sheets on. I almost forgot to take my medication because I had become so used to having a nurse sort all that out for me. Not only do I get to physically rest in hospital I am able to mentally shut down. I don't need to remember birthdays or which kid is going to which friends house or stress about what to feed my ultra fussy Big Fella. For a week or two (or sometimes more) somebody else has to worry about the minutiae of life and I can be selfish and just think about me.  The reason I say this is because since getting home I've become immersed in all this shit and I'm shattered already. The the kids going back to school is a major cause of stress. Big Girl was set 7 pieces of homework to do over the summer but

I'm back at home! 🏡🎉🎉🎉🎉  I was discharged yesterday afternoon and luckily it was Dads day off work so he was able to pick me up. The first thing I did when I got home was to get straight in the shower. I hadn't had one for days and I felt grotty.  Now don't judge me and think I'm a scruffy cow- it's not easy to just jump into the shower when you're connected up to a drip 24 hours a day (instead of just overnight for 12 hours at home) and have those fluids going into a central line in your neck that can't get wet. I must have been in there for about 30 minutes washing my hair, scrubbing my body, shaving my legs and just sitting feeling the water pour down on me.  After that I got dressed and went to my Mum and Dads. The kids were there and they didn't expect me to be; they thought I was still in hospital. They were both upstairs and I shouted them down for dinner.  It was great to see the expression on their faces-first confusion, then surprise and f

As I've passed through the corridors of the QMC hospital this last week I've noticed that there must have been a project recently to try and smarten the place up. Obviously the beds must  scrape the walls as patients are moved from ward to ward and  over enthusiastic wheelchair pushers have obviously  bashed into them on occasion too.  But I have no idea what Cowboys they've had doing the work... Nice touch up job here! There are just no words...😂 Perhaps there are paint shortages in the NHS or budget constraints mean that they can only touch up the wall rather than paint the whole thing! It reminds me of my blog post 'curtain gate' where the curtain was too small for the window. It also just goes to show that no matter how crap things are you can always  find something to laugh at.  NB x

I'm all ready to settle down and watch the final of Celebrity Big Brother.  I've been down to Costa to get a mango and passionfruit cooler and a packet of revels- my treat for the week. It may not seem terribly exciting to some but as I'm only allowed to drink emix or double strength Dioralyte any other drink is exciting! And I've been really good with eating only plain things that I know won't upset my bowels- most days it's been jacket potato and cheese- so again a bag of chocolates is something totally different. I have been good and only got a small bag instead of a sharing size one so hopefully I can enjoy it without ending up in agony or on the loo all night.  So who will win? I'm team USA all the way. Ricky has been booooring, Marnie did my head in with her showmance with Lewis and Bear- well there's nothing to say about that knob head really is there? At first Frankie drove me mad but he's really grown on me. I like Aubrey- I wish I could con

Last night I went down to theatre to have a central line put in my neck.  Obviously that's not me- my hair is longer and my tits are bigger 😉 Now this one is me- can you spot the difference? A central line is essentially a big cannula that goes into the jugular vein in the neck and down towards the heart. I'm so difficult to cannulate so when my third cannula tissued yesterday (medical term for stopped working) I asked the doctor if I could have a central line. I know some people will think I'm mad requesting to have a giant needle stuck into my neck but I would rather have one painful procedure done than have repeated cannula attempts done every day or even multiple times a day.  Because it has to be done in theatre by an anesthetist you get called whenever they have a free spot. From past experience this is usually at some ungodly time in the early hours of the morning and you get a nurse coming in to wake you up, flapping about because theatre has called for you and the

I have just seen the Doctors this morning who have confirmed that I do have a line infection. To be honest I was really shocked- I had convinced myself that it was just a virus and that I would be out by the weekend. So now I'm having to come to terms with the fact that I'm definitely not  going to Germany and will be in hospital for a minimum of 2 weeks. I'm gutted. Absolutely gutted.  The blood cultures show that there is a bug in the line but nobody can explain why I didn't have any temperatures or fevers. I continued to use the line all last weekend and actually felt better when having my feed which is the exact opposite of all the other times I've had line infections. Because of this the blood cultures are going to be repeated today to make absolutely sure that there is an infection and to identify it so the microbiology people can tell the doctors what antibiotics to treat it with.  I am also going to look at other ways I can reduce my chances of getting infec

So right now Hubby and the kids are flying over Europe on their way to Germany.  There will be an empty seat on the plane where I'm supposed to be sitting but instead I'm in my hospital bed typing this. I thought I was ok with it until I got texts from the kids... As  I read them I struggled to hold back the tears.  The top one is from Hubby replying to me. Then the second is from Big Fella (I've used the pink tash to block out his name as I like to keep the kids anonymous) The third one is from Big Girl.  It's hard knowing that they're going to have a great week away. Of course I want them to have fun- it's just I would rather be there with them. The weather this week in Germany is hot, hot, hot (even hotter than here in the UK) and I had been worrying about dehydrating- well I don't have that to worry about now! People have said to me "you'll be able to go in a few days if you're discharged" and in theory they're right. If I don't

This summer I rather optimistically planned two holidays- the first a week in Devon with all of Hubby's family and the second a week in Germany visiting friends. I was obviously too greedy because on Monday (just 3 days before I was due fly to Germany) I was admitted to hospital with a suspected infection in my Hickman line. I know I should be grateful that I managed to have the week in Devon but going to Germany was a big thing. It was going to be the first time I had flown since having a Hickman line and it's taken endless emails and hours of telephone calls with the airline and my healthcare team to organise. You see going abroad isn't just a case of taking a bit of extra medication in the suitcase...the feed I have through my Hickman line has to be refrigerated so travelling with it is always problematic.  When we went to Devon I froze a million ice blocks and put them in the cool bags with the feed  and then put the feed in the fridge at the other end straight away. We

Why is it that as soon as the school holidays start everyone gets ill? Big Girl came down with a heavy cold on Monday and she's been generous enough to pass it onto me. I'm lying in bed with aching limbs and a banging head and Big Fella has gone to sleep clutching the sick bowl. I really hope he's not sick in the night because I really can't be dealing with that. Not the way I'm feeling right now.  I've been looking forward to having the kids at home and having long lie ins followed by lazy pyjama mornings and then quality time with the kids. So far I've survived (barely) a 7 girl sleepover, a trip to the cinema (where I fell asleep during the film!), a day without internet due to planned engineering work, a hospital appointment and food shopping. I feel like I've ran an uphill marathon and yet my calendar tells me it's only been 3 days! I still have to buy school uniform and shoes, get sorted for holiday and motivate Big Girl to complete her homewor

I'm on the train on the way down south to visit friends. Big Girl has been invited to a birthday party and one of my dearest friends has a special birthday in a few weeks but we are away on holiday so we are celebrating early. Along with a group of her closest friends I've planned a treat for her but she's in the dark as to what it is. I can't say what incase she reads this before we go out but I can't wait to give her a day that she deserves because she is one of life's Angels. She would do anything for anybody and expect nothing in return.  But back to the train. Being on benefits and not with money to waste I have to travel cattle class but I always, always reserve my seats. I'm very specific- I like to travel facing forward, (I can travel backwards but I just like to see where I'm going) with a table, next to a plug socket and close to the toilet (for obvious reasons). Tonight I'm in coach E so had to walk almost the length of the train only to f

I thought I had better write to confirm that I'm still alive and well. I haven't blogged since getting discharged from hospital because as soon as I got home I got right back into family life and was busy spending time with Hubby and the kids making up for the four weeks that I had lost while in hospital. So what happened in the end? The short version is that I got a new Hickman line, was declared bug free and sent home. The slightly longer version would include the issues they had getting the line in, the difficulties I had with the Consulant in Nottingham and how unwell I still was when I got home but I don't have the time or the energy to go into all that and it's all water under the bridge.  Luckily though I managed to get an emergency appointment at St Marks two days after being discharged from Queens Medical Centre and went down to see my team. I had the opportunity to sit with a gastro consultant, specialist nutrition nurse consultant and a dietician all at once

I was declared bug free on Friday and had a new Hickman line inserted. As you would expect with me it didn't quite go as straight forward as it could but it's in and it's working. The problem was that I wanted to have some sedation for the procedure but to get sedated you need a cannula and to get a cannula you need a decent vein. And I didn't have one. Numerous doctors tried at various times of the day and night. I even had an A&E trauma consultant come up with an ultrasound machine to try to locate a suitable vein! He did manage to get a tiny cannula in after spending 30 minutes looking for somewhere to put it but within an hour the vein had given up and the cannula tissued. After feeling exhausted and like a human pin cushion the final straw came when they said the only vein left to try was on the sole of my foot! I've had cannulas in my feet and ankles before but I drew the line at the soles. Could you imagine how painful that would be? You know what it'