Do you want the good news? Or the bad?

I've seen my consultant. And I have good news! Dr2 was reviewing my obs- do you know they do all those electronically now? No, I'm not talking about the blood pressure machine and electric thermometer. They have what looks like an iPhone and they put all the details into that. I have to admit that the first night I was in one of the healthcare workers was doing my obs but then got their phone out of their pocket and started tapping away. I couldn't believe it. I would have expected it from a young 'un but this lady must have been in her 50's. But then as the days continued I noticed that they were all doing it. The bloody cheek of it! And then it came to me- they were entering all the details into it. That explained the lack of notes at the end of the bed (which Hubby was upset about as he used to like to sit and read them and pretend he was a doctor and could understand them!)

Anyway, I've gone off at a tangent. Whilst talking, Dr2 asked what the regime was for a line infection in St Marks. He was surprised to hear it was only 7 days of antibiotics. Earlier in the week I had previously spoken to one of his team and they were really shocked that St Marks didn't do another reculture (to check that the infection had gone) before starting to use the line again. I think that given this information and the fact that I was so upset at having to be in for over 2 weeks Dr2 has decided to reduce the antibiotics to 10 days. Yay!! I'm pretty sure that the fact that I was up, showered and looking a bit more human must have also helped him to make that decision. So on Friday the antibiotics will finish and I will then have more blood taken from the line either on Saturday of Sunday to see whether there are any bugs left. If the infection has gone- please infection please go, I want to go home so please, please go- then they will use the Hickman line and if everything's ok I will be discharged. Whoop Whoop!!

If the infection hasn't gone it will mean the line will need to be pulled out, more antibiotics and a new line going in only once the infection has gone completely. Of course it's all completely sensible but that could mean up to a month in hospital altogether. I know that I won't be able to cope with that so fingers crossed it's not the case. I'm pretty hopeful because the infection was caught early. If I had used the line causing the infection to circulate around my body, having the rigors and hallucinating (like the last line infection I had) then I would be planning childcare for another 2 weeks. But as it is, I'm not. 🙏

But just as I received this piece of good news I had a phone call from the estate agent. And she did not have good news. The house that we had been hoping to buy had vanished from Right Move and I had left a message asking her to call me. We were just about to get the survey done so couldn't understand what had happened. Unless they had taken it off because it was under offer? I hoped so but wanted the estate agent to explain to reassure me. At first she skirted round the issue saying that it was temporarily off the market, that the vendor had some personal stuff to deal with etc etc. Well I went a bit bonkers asking her to explain. That I shouldn't have had to call her, she should of call me, notified me of any changes, that this was not acceptable. And then she told me, almost in a whisper that the chap selling the house had died. He wasn't old, I reckon early 40's, and it was unexpected so his wife is understandably distraught and doesn't know what to do with the house.

Bloody hell. I was stunned and could barely finish the phone call. As I hung up I went through a mixture of emotions: feeling sad and empathetic for his widow and children then realising that we had just lost the house we wanted to buy and feeling like I had been punched in the stomach. And then feeling guilty for feeling upset when clearly his family had more right than me to be upset because I had only lost something in my imagination and they had lost something very real.

But trust kids to say it how it is. When they asked me how he had died I told them that I didn't know. "Well didn't you ask?" Big Fella enquired. Erm. No I didn't funnily enough son! Big Girl then said "well he did have a big motorbike and we all know how dangerous they are" followed by Big Fella's pearls of wisdom "He worked in security. He was probably stabbed". So there you go. Out of the mouths of babes and all that.

NB x

New car smell

After everything that’s happened over the last 5 weeks not many days have been good days but today was. I will write a blog post about everything that happened but that’s for another day! Today I went to pick up my new motability car and got to breathe in that new car smell. I am now the proud lease holder of this lovely Volvo XC40. To be honest, part of me wasn’t sure whether to write a blog post about getting the new car with everything that’s been going on with the disability benefit reforms. There’s been so much written about motability cars on social media but a lot of it is misinformation and hate and that made me nervous to write this post. But I figured that most people reading it are friends and family and understand my need for the car. But for those that don’t let me explain a bit about how the motability scheme works. I am lucky enough (or unlucky enough depending on how you look at it) to claim PIP- personal independence payment. This benefit is designed t...

The germs have got me 🦠

Being on azathioprine, influximab and prednisone is helping to control this recent Crohns flare up. But unfortunately they work by wiping out my immune system making me more susceptible to all the bugs doing the rounds. I refuse to stay at home and be held hostage by these meds though- for me they are there to give me my life back, not to make me a prisoner in my own house, so the inevitable has happened and I’ve got a cold. ‘It’s only a cold’ you might think, but with no immune system to fight it off this cold has made me pretty poorly. Yesterday I couldn’t get out of bed and felt so, so ill. I was coughing and struggling to breathe so I’m pretty sure I’ve got a chest infection too. But I can’t confirm that because apparently even being immunocompromised with a suspected chest infection is not enough to see a GP these days! I spoke to the receptionist at the GP surgery this morning who told me that all the urgent appointments for today were gone (and this was at 8.25am, aft...

Disability benefits cuts

So in Rachel Reeves spring statement earlier this week it was confirmed that there will be massive changes to the benefits system including the way that PIP is assessed and changes to the health element of Universal credit. As someone who is receipt of both PIP and ESA disability benefits I find this whole situation… 🔲 terrifying 🔲 baffling 🔲 rage inducing 🔲 disgusting 🔲 [all of the above] I honestly cannot believe that a LABOUR government is looking to balance the books of the country by taking money from some of the poorest and most vulnerable in our society. This is the sort of thing I would have expected the Tories to do but when I voted Labour I honestly thought that not only would they look after and protect the neediest but they would actually make things in our society better and fairer. How wrong I was. Looks like I’m going to have to get some ‘Fuck Labour’ merch to go along with my ‘Fuck the Tories’ stuff I already own! Now I do b...

More than just a bag lady

Search This Blog