My new Consultant and the 14 day rule

I had an appointment to meet with the Gastro consultant in Nottingham in a few weeks time. It would be nice to meet him as Dr7 had spoken highly of him and reassured me of how good the Gastro team was at the QMC. The appointment would also offer an opportunity to discuss how shared care would work. But I wasn't going to have to wait that long bevause as an in-patient I would meet him on the ward round. 

I was lying in bed watching TV when my door opened and the doctors all swanned in. (At this point I have to mention that to watch the small bedside TV it had cost £20 for 3 days! Complete rip off) There were 5 doctors and a senior nurse present and nobody other than the consultant introduced themselves. For the purpose of the blog he will be forever known as Dr2. He was a real old fashioned type of consultant, even wearing a bow tie. 

We began talking about my current treatment and then we got onto the topic of shared care. My understanding was that St Marks would remain primarily in charge of my care with me just having a few appointments with Dr2 each year to tide me over and reduce the amount of travelling I would need to do. But Dr2 has other ideas. He said that it's either him that looks after me OR St Marks. 😱

He wants to have control over my TPN prescription and change my TPN provider and delivery company as they don't use the one I'm currently under.  This did shock me as it wasn't what I was expecting but he told me that he has around 80 patients on TPN (St Marks has 300+ ) so he's not working in a small local hospital that regards TPN patients as a modern day curiosity. And he knows Dr7 personally so said he can always contact him if he needed to.

I think he could see I was shocked so he told me that I could think about it. He said he could just patch me up and get me home and I remain under St Marks or I could decide to transfer and become one of his patients. I actually think he saw it as an insult that I would want shared care. But now I've got to decide whether to stay primarily under Dr7 at St Marks and contend with appointments in London or transfer to Dr2 with the convenience of local appointments but with the potential of lots of upheaval in the short term. Lots of thinking to do. 

I asked about having day release in order to spend some time with Big Girl on her birthday later in the week. I wasn't sure whether this was something that this hospital did but I was relieved  to find out that they did. I was going to be allowed out in between my antibiotic doses which are at 11am and 11pm and as long as my blood tests showed I was doing ok. Brilliant!

But then he slipped in that I would need to be in hospital for 2 weeks to have the full course of antibiotics. What the fuck? 14 days? Are you kidding me?

When I questioned him about it he said that that want to make sure that all of the bugs have gone not just most of them and that takes 14 days. I explained that St Marks only do 7 days treatment but he curtly reminded me that I was in Nottingham now and 14 days was the policy in this hospital. And I would have to then stay another few days to check the Hickman line is working ok and have tests done to check that the infection has completely cleared up.  

So that's it then. Bang goes the rest of the summer holidays. All the plans I had made are out of the window. Instead of going to Hertfordshire to see their friends and having days out the kids will have to contend with being shepherded from house to house, relative to relative. I know it's important to get rid of the infection and have all the antibiotics and blah, blah, blah. I'm sick of hearing it all. Imagine being in hospital on your daughters birthday for the 3rd time. Not being there when she wakes up, all excited to open her cards and presents. Imagine having to say goodbye after 4 hours and see your daughter crying because she doesn't want you to go back to hospital on her birthday. Imagine seeing your children's faces crumple when you have to tell them that you're going to be in hospital for 2 weeks. It's bloody heartbreaking. 

And then there's the knowledge of the stress it puts on the rest of the family. Hubby has started a new job with a 3 hour round commute so he's exhausted. He can't have any time off so early into the job so then we are reliant on other people to help us. My mum is the joint carer for my Grandma who has dementia and her sister (the other carer) is on holiday this week. So I know that now my mum has to look after her mum, help look after my kids and go to work. She tells me it will all be ok, it's not your fault and that's what she's here for but I know she's going to be exhausted and I feel incredibly guilty. Hubby's family will help out but it's Sod's law that this is the week his sister is going to visit their brother in Liverpool so she's not around to help. My best friend has even offered to have them in Hertfordshire with her for a few days if someone can deliver them to her but she's pregnant with her 4th and I think it's too much for her to have 5 kids on her own for nearly a week. And on top of this we are trying to sort out the sale of our house, look at buying a house in Nottingham and all the crap that goes with all of that. Yesterday I had 14 missed calls from different estate agents!

Aaaarrggghhh!!!

I feel like my head is going to explode. I'm poorly and I feel crap and all the balls I've been juggling and just about kept in the air are now coming crashing down. Excuse me while I have a minute to feel sorry for myself. Normal service shall resume later. 

NB x