Bone marrOW biopsy!

Today I had my bone marrow biopsy, which wasn't pleasant, but was far nicer than I had braced myself for! It seems I'm incredibly sensitive to entonox (nitrous oxide) because I spent the majority of the procedure off my face; entirely unperturbed about a chunk of my hip being surgically removed. I'm feeling pretty sore now - I ironically spent too much thought worrying about the biopsy itself to consider the pain of recovering from it - but it's still nothing compared to transverse myelitis. I've had a lovely Sick Day watching daytime TV, dominating at Monopoly (my opponent owns owns Vine Street), and taking painkillers - so I can't complain.

Love Emily x

Bone marrow

Today I saw a haematologist, to try to get to the bottom of my lack of haemoglobin and neutrophils (latest neutrophil count is 0.9, which is actually an improvement!). This consultants opinion directly contrasted the 'it's not a big deal' view of the registrar I saw a few weeks ago: I'm having a bone marrow biopsy next week, with a view to starting G-CSF injections soon after the results are back. I also had some bloods taken which were too specialist to be analysed in Nottingham and are being sent to the National Blood & Transplant labs. The suspected diagnosis is autoimmune neutropenia, which is incredibly rare in adults, but essentially means that I have normally functioning bone marrow which makes neutrophils, but my immune system has mistakenly identified them as harmful and destroys them before they can fight infection - which would explain how I got meningitis. The G-CSF injections (G-CSF stands for granuloycte colony stimulating factor; very confusing since I've used the acronym CSF to mean cerebrospinal fluid so far!) will stimulate bone marrow production of white blood cells in the hope that the rate of production will beat the rate of destruction, and I'll be left with a healthy level. I'll have to give them to myself daily, probably for life. They need to be stored in a fridge, which certainly wasn't available when I was camping in Africa, so I'm very glad I was able to enjoy that experience whilst I was able to. Now, to look forward to the biopsy...

Love Emily x

1 year qualified

I can't believe it's been a year since I qualified! I feel like I'm starting to get the hang of this 'being a midwife' rhubarb, and I'm still loving it.

Health wise there's been a few blips in the past few months. My neutrophil count (neutrophil = a type of white blood cell responsible for fighting infection) dipped to 0.6 (normal range is 2-8, <1 is the level you'd expect to see in an oncology patient undergoing chemotherapy) and as a result I've regularly been picking up colds, chest infections, ear infections, sore throats, UTIs and keratitis (cornea infections). I've been seeing haematology because of this and the working diagnosis is autoimmune neutropenia: in English, my body is making neutrophils but my immune system destroys them before they become effective. It's a condition which usually affects newborns and infants, but most outgrow it and is therefore incredibly rare in adults. Usually it's pretty benign and is more of a 'quirk' than an issue, but given that it's the probable cause of meningitis and sepsis then the possibility of G-CSF treatment (something I don't fully understand but involves encouraging my bone marrow to produce more white blood cells) has been floated.

Completely incidentally, whilst having blood tests for the neutropenia a fairly dangerously low haemoglobin (Hb) level even for a redhead vegetarian! I was offered a blood transfusion which I accepted, and was admitted to QMC for this, but then it turned out that my GP hadn't cross-matched any blood for me (checking my blood group against what the blood bank has in stock and ordering the right stuff) so it couldn't be done that day, although I was given an IV iron infusion which made me feel AMAZING! I've had a couple more since, and it seems to be keeping on top of things.

Love Emily x

P.s. It's been >1 year seizure free, so this happened:

Dublin; Ireland

I've had annual leave this week. I'm off to Copenhagen at the weekend, but was looking for something to fill up the earlier part of the week. Flights from East Midlands to Dublin were fairly cheap, and serendipitously we realised it was St Paddy's day this week, so less than a week ago this trip got booked.

We spent the majority of the time rat-arsed (Whisky Museum, Guinness Storehouse, Temple Bar, St Paddy's parade), and it turns out our hotel was directly above possibly the liveliest nightclub in Dublin. This was fantastic when we checked it out, but less so three hours later when we wanted a bit of kip, and even more annoying when the fire alarm got set off at 4:20. 

The St Paddy's parade was very confusing. I've got enough Irish friends to know if an event has an advertised starting time of 12:00 then you can rock up at 13:10 and still have bags of time, and this turned out to be bang on... and once it started, it seemed to have been envisioned and orchestrated by primary school children. The few parts of it which had any relation to Irish culture or history included military marching, but even this had no rhythm or co-ordination, and whenever the procession paused the soldiers turned around and chatted with each other... one even blew bubbles with his gum! 

Before the parade we faced a difficult decision - were our last €10 to be spent on food, or on souvenirs? The outcome was overwhelmingly in favour of this shite.

Following up from my last post, I was contacted by a magazine who'd seen my story on the meningitis website and wanted to feature me in their next issue. I'm not sure why I felt reluctant to agree, but I asked for time to think before making a decision. I'm very glad I did, because I used that time to check out 'Pick Me Up' and found cover story gems such as: "RAPED by the devil", "Killer confessions: I wanted to EAT her alive" and, my personal favourite, a photo of a baby with the headline "my mummy thought I was a POO". I called them back to politely decline.

Love Emily x

Fame!

My story has been published as part of the Meningitis Now campaign to raise awareness of the huge range of symptoms someone with the illness might have. They've put a slightly melodramatic spin on it, but nothing (except rounding up my length of stay to 2 months) is untrue. 

You can read it here, if you want to: https://www.meningitisnow.org/support-us/news-centre/meningitis-stories/emily-stringers-story/ 

Love Emily x

Rygge, Oslo and Bergen; Norway

Yesterday I hopped on a flight to Rygge, and then got a train to Oslo. I stayed the night in Oslo, and this morning caught a train to Bergen. The Oslo-Bergan rail route is meant to be one of the best train rides in the world, and having done the trip I think that's a fairly solid claim to make!

I was extremely lucky with the weather - below is the state of Rygge station when I turned up!

The train route travells over, through and around mountains, as well as running alongside fjords. This scenery must be beautiful at any time, but it was stunning with the thickest layer of snow I've ever seen. I'm a bit disappointed with the quality of these photos, but it's very difficult to take good snow landscapes through a window of a brightly lit moving train...

Some of the fjords we travelled past - easily the width of the Thames - were frozen. You can see this little one starting to thaw out.

I tried to include some houses, if only to prove these aren't black and white photos!

Spot the house and pylons for perspective!

When I told people about this trip the first question most asked was "who are you doing that with?", and the usual response was a 1:2 ratio of admiration and exasperation when I replied "no-one, just me". It's been one of the most hassle-free journeys I've ever taken, and the UK can learn a lot from the Norwegian public transport system! Also, the ultimate deal-sweetener, I got 1ltr of vodka for NOK 99 (£7.63). 

Now to get planning my next jolly: Denmark in March. Maybe doing some work to pay for it, too.

Love Emily x