I feel as though I'm on an emotional rollercoaster which has been triggered in part by this latest admission. I thought I would try to summarise what's keeping me awake at night and what I'm having trouble with at the minute. I could probably write a blog post on each of these but I don't have the time and you would probably get fed up of reading them! So here goes. Listed in no particular order we start with...
Differences between hospitals
I stupidly and naively thought that the techniques and practices that St Marks use and teach their TPN patients were widely adopted throughout the rest of the UK hospitals. St Marks is the only dedicated bowel hospital in the UK and trains medical practicioners from all over the world so you would expect them to know what they're doing, right? Well obviously their ideas haven't made it up the M1. The team here at QMC in Nottingham also think their way is right and while I'm sure it is ok, it's not the St Marks way. When I mentioned this and questioned why there wasn't a single way adopted throughout the NHS the nurse said that it would mean other major hospitals having to admit that their way might not be the best. "Who's going to say that your hospitals' way is better than ours?" she said, "we all think our way is the best way otherwise we wouldn't be doing it". Fair point except that surely the hospital that is seen to be the most specialist in the subject matter would probably have the best ways. Ah, that would be St Marks. Think I will stick with what I've been taught.
And along with the doctors and nurses, IF ward and first class, specialist treatment St Marks has to offer I'm also missing the fabulous stall they have by Costa everyday. Call me shallow but I loved going down and seeing the handbags, dresses, scarves, earrings and other stuff that was on sale! On a serious note though, this whole discussion was prompted because I've had to...
Protect my Hickman line again
Last week I had a student nurse start messing with my pump and Hickman line (this is a massive no-no, they're not even allowed to touch normal IV stuff until qualified and completed the additional training) but I put it down to an eager student who momentarily overstepped the boundaries. I did dob her in to the nurse in charge though- goodness knows what she might do next?
Today I've had to fend off an agency nurse who actually didn't even know what a CVC was (central venous catheter, a type of which is a Hickman line). Look lady, if you don't know what it is then you sure as hell haven't been trained on it, so you're not touching mine! No way am I risking another 2 weeks in hospital out of politeness. When I spoke to the nurse in charge today she was apologetic but insisted that all agency staff are told not to nurse patients with a Hickman line. All agency nurses? I asked her. Oh, apart from today. We obviously forgot today. This was honestly her response. You couldn't make this up. But she doesn't quite make it to the top spot of stupid/inappropriate things said to me this week...
Can you just hold on?
This is what I was asked by a senior nurse when she came to put a cannula in me and I was on the way to the loo. "No I'm afraid I can't, I have bowel disease" was my reply. The look on her face was absolutely priceless. When I came back she couldn't stop apologising even though it had clearly been said mistakenly. I figured she was in a rush but I knew that I couldn't hold on bevause it was probably going to take a while bevause of my...
Bad, bad veins
They have been super naughty. I've already had a few of these-
and they don't go in on the first attempt either. Yesterday after over 10 punctures in an attempt to get blood out of me a locum doctor took pity on this poor pin cushion and decided that she was going to use technology in an attempt to find my veins. This little ultrasound machine, similar to those used when you're pregnant, was what she brought back.
Not exactly the high tech vein viewer* that St Marks have. Stop. Stop. Stop. Must stop comparing the hospitals. Anyway, this lovely doctor spent over an hour and a half trying to get a needle into a vein, any vein and stay there. It was fascinating to watch; you could see on the screen the cannula going through the skin, down to the vein and literally bouncing off it. At one point we heard a pop and when she pulled the cannula out the doctor showed me that the needle had split the cannula tube bevause of the force she was using to try and penetrate the vein. The doctor said she had never seen anything like it and never had experience of anybody with such tough vein walls. You know me- I am nothing if not unique! So I ended up with no cannula, missed out on getting my fluids and as I'm lying there feeling crap and wondering if I will be going home soon I start worrying about..
Trying to find a house to buy
There's nothing that comes close to ticking all our boxes on the market at the moment. We recently...
Lost our dream house
So with nothing to buy and the hope of being in our own home in Nottingham by Christmas fading fast I've started...
Looking at houses to rent
And the price that some of them are charging is ridiculous. There doesn't even seem to be many decent properties to rent. I was looking at one and thinking to myself, I wonder why the picture of the house has been cut off to the right? It's only next door to a fire station. Literally next door. Could you imagine being woken up at all hours with the fire engine sirens going off? Whilst some people think that rent is just throwing money away I reckon it will give us the opportunity to be a cash buyer and able to wait for the dream home to become available. Plus it will give my parents their home back. But then I think about moving twice, double the packing and about the fact that I really must...
Find a removal company
Our buyer wants to be in by mid September at the latest so that means we have to move out. Logical stuff but it's just hitting me and Hubby that we are selling our family home. It's not just a house, it's still our home and we haven't had the chance to say goodbye properly, both logistically and emotionally. So now from my hospital bed I'm trying to find someone not only to move us but to pack the house up. I physically can't do it, Hubby can't get the time off in his new job and it's probably better for our sanity if the professionals do it. Though not better for our bank balance! And from packing I start thinking...
Where's all our stuff going to go?
We are full to capacity at Mum and Dads and I think if I turn up with even one more box of stuff they're likely to have a heart attack! In my head all my stuff was going to go into the gorgeous new house that I had bought and the thought of it having to go anywhere else never even entered my head. I suppose the options are a) it will go into the ok rental property that I'm going to have to bust my balls finding once the kids are back at school or b) into storage. Neither option appeal although the thought of having to find a big yellow storage box type place, work out what size unit I need (how do you know???), arrange it all Tetris style in said unit which will either be way too big or inches too small, only to have to move it again in weeks or months is the most horrendous of the two.
I've realised then that I need to hop foot it back to Hertfordshire to sort the house out. I need to get together all the precious stuff that I would be devastated if they got damaged or went missing like photo albums, the kids memory boxes etc and bring them to Nottingham and beg a family member to put them in their spare room or loft. I need to do the same with anything I wouldn't want the removal men to touch and also let the kids go through the stuff we left in the house to see if any of it can be donated to the charity shop, sold or most obviously be just what they've been missing all these weeks and must come back to Nottingham with us. This will usually be what as parents we consider to be junk but the kids consider it an item that they now cannot live without. And the only chance we have to do this fun task is...
Bank holiday weekend
Flocks of people will wait with anticipation for a break in the rain, get in their cars and cause traffic jams up and down the country. And what else would we rather do than join millions of other drivers on Britains motorways eh? But until they invent a teleporting, 'beam me up Scottie' type of machine, that's the only way to get from Nottingham to Hertfordshire.
Then there's the scary thought that the Bank Holiday signifies the end Summer. I know that where the weather is concerned Summer never really seemed to get started did it? I suppose the weather hasn't mattered for me the last 2 weeks but prior to all of this I had grand plans of how I was going to make this the best summer yet for the kids after having the last few spoilt by me being in hospital/being ill. And of course that's not happened. Again. I know that they've had fun playing with their cousins, spending time with grandparents and other family but...
But what? I suppose I wish that all that was not out of necessity. I wish I was there and able to choose whether to join in or step back and rest rather than being in hospital. I know I'm a bit of a control freak but there were things that I would have liked to have done, activities that I wanted to take them too, people I wanted to see and it's not happened. I suppose I wonder whether this is how it's always going to be. Never being able to commit to something 100% because at the back of my mind I'm thinking 'will I be ill? Will I manage to go?' And now the summer is pretty much over. But if I do make it out of here before the weekend we are definitely hitting the M1. I have a house to sort out and the only thing I would love to do more than sort is to
Catch up with my southern peeps.
I'm really missing them. I knew it would be hard to leave them all but these school holidays have highlighted how isolated I am in Nottingham. Yes I have my family and a few friends locally but it's very different. I'm used to having a revolving front door with friends dropping by for a cuppa and then ending up staying the whole day. I'm used to going to Tesco or Marks and Spencer and stopping about 10 times because I've bumped into someone I know and we've got chatting. The kids are used to having lots of local friends and although they settled really well at school I just didn't have the opportunity to get to know other parents well enough to arrange play dates. I know it's going to take time but right now I need a whole lotta lovin and I'm hoping that if I make it to Hertfordshire for bank holiday weekend that I will get it there! Because then it's...
Back to school
And I'm so unprepared. At the end of every school year I pack away the school uniform into boxes and then it's out of sight, out of mind for the summer. Luckily because I had to buy new school uniform for the kids starting their new school so I don't think they need much. Luckily I did pre order the embroidered stuff so it just needed picking up. Luckily my parents did this for me and also got Big Girl some new school shoes because I had of course left getting them to the last minute. Apparently the queue in Clark's was mental so I'm actually secretly pleased I didn't have to spend ages waiting in a shoe shop with loads of kids running around and no doubt screaming and crying. What has made made me cry is...
TV charges
Do you know that they charge you £10 a day to watch TV in QMC? Obviously you don't have to pay it but they've got you over a barrell bevause there's not a lot else to do. It does get cheaper the more days you buy but even at £34 for a week it's still not cheap. I remember watching a This Morning episode years ago and it was discussing the fact that prisoners were complaining about having to pay £3 a week to watch TV. I'm not entirely sure how factual that is having never been detained at her majesties pleasure but if it is true it's just madness. What is also bizarre is the fact that Hospedia the company that owns and runs the TVs in hospitals charges different prices in different hospitals. I would have expected London hospitals to be the most expensive but at St Marks it's £3.75 a day and that gets reduced after you've been in for so many days. At Princess Alexandra Hospital in Essex you'll pay the princely sum of £15 a day which is absolutely outrageous. Because I've been hoping to go home soon I haven't paid for the TV this time, instead spending my time on...
Facebook, Twitter, Pintrest
I can happily sit going through these sites, and others, for hours. On Pintrest I have boards full of activities to do with the kids but when I want to get them off their iPads to do something I can't think of a single thing to do with them and forget about all the stuff I've pinned! Twitter is fantastic because it allows me to connect with people that I wouldn't ordinarily meet in real life. I've been chatting with other people that have j-pouches and also those living vegan or raw lifestyles. I'm desperate to be able to eat more healthily and I'm intrigued by what other 'pouchies' are able to eat. I know that everyone is different having people to talk to is great. I've even had a tweet from someone from the local IA group (ileo-anal pouch is another name for a j-pouch). I've been invited to a support group meeting and I think I'm going to go as it will be an opportunity to meet new people. As much fun as the online world can be nothing can be real interaction especially...
A suprise visit from Hubby and the kids
Last night they burst through my door and I couldn't believe it. I hadn't expected to see them and it made me so happy. Big Girl immediately instructed me to sit down so she could begin plaiting my hair and Big Fella began the process of adjusting my bed aka playing with the controls and seeing how high up the bed will go! I loved having cuddles with them and can't wait to get home to them.
NB x
*Here's my post about the Vein Viewer incase you're interested:
http://morethanjustabaglady.blogspot.co.uk/2014/07/not-again.html?m=1
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