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She’s rock hard my girl!

So after yet another brush with her mortality, Ava-Jane has bounced back, mocking our worries as she goes.

And I am the worrier! We had a bit of a fraught day in hospital last Thursday. Fo and the gastric surgeon were arguing for AJ to get out of the hospital and home. I was arguing feebly against, muttering “…but the nurses” and “…but the machines that go ping.” And, as it turned out, getting her away precisely from those machines that go ping was just what the doctor ordered, quite literally in this case!

We got her back home and she had a play with Nonny and a cuddle with Otto, went to bed and slept for fourteen hours!

And she hasn’t looked back ever since. Admittedly we had to whack up her morphine dose and to step it back down gently to help with the withdrawal symptoms. But she is now 24-hours clean and still pretty chipper. She has just had a bath and doesn’t smell of hospital!!

Playing with Nonny

Obviously we are not ones to take things easily and we had a pretty busy weekend with our lovely Swiss carer’s friend arriving on the Saturday and Otto having one of his now legendary sleepovers. Somehow a sleepover at ours has become a tradition with Otto and his bunch of mates from pre-primary school. They have gone to various secondary schools but they regularly gather at ours, taking up increasing amounts of space as their limbs grown longer and ganglier. The evening involves lots of sweets, pizzas and Shrek! We don’t think booze has yet arrived but it undoubtedly will soon enough! We did make sure to lock AJ’s morphine up – just to be on the safe side. Trying to make sure that Otto has a semblance of normality is all part of the perpetual juggling act. A good sign that things are actually some way back on track is that he has allowed himself to be unreasonably demanding as any self-respecting teenrager (ha! that was a typo – but it works!) should be. He is on worryingly good levels of behaviour when things are tense with AJ.

Then we had a visit from Amber and Esme from Nearly Wales (it’s a long story: they used to live ‘Just In Wales’ and then moved across the border. Esme’s brother was always ‘Freddy from Wales’ to distinguish him from other Freddies, and now he is ‘Freddy from Nearly Wales’.) Amber is Ava-Jane’s Godmother and Esme and AJ have always been great mates. See pics:

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Big shout out to Fo. I definitely do not do enough shout outs to Fo, I don’t really do shouts outs at all, to be honest. She keeps everything on track and really knows what’s best for Ava-Jane. We are quite good in a crisis and a good dose of trauma can act as wonderful marriage therapy. When suddenly the trivialities of whose side of the room is untidier mean so very little, we pull ourselves through, together, and instinctively know when the other needs a break. Fo’s great at making sure I get back home to watch a bit of rugby and chop some logs.

One very awesome piece of good news is that Ava-Jane has got into the secondary school we really wanted. Ava-Jane is a massive bureaucratic bundle of red tape wrapped up in a cute little girl. Quite apart from the trolley of medical paperwork that she produces, and they literally do need a trolley for all the files associated to her health, there’s the whole world of the educational-stroke-health-stroke-care plan – EHCP. It’s far too late to go into the intricacies of this right now but it is a key document that she needs to advance in her education. To get it all in place she needed various assessments, from speech, to eyesight, to physical impairments but given that she has spent most of 2020, and we are only half way through February, on the operating table; holed up in a room wired up to a video brain scanner; or in an induced coma, it has been quite hard to fit in these assessments.

We have applied to a seemingly fantastic special-needs school that is very close to us, but not “in county”, which presents a whole set of different bureaucratic hurdles – not least that she will now have her healthcare in one county and her education in another. I was very worried that this whole rigmarole would get horribly tangled, where the processes for applying for school and for getting her EHCP in place weren’t happening at the right time and she would fall through the gaps. But fortunately we had the most amazing advocate in Emma, who somehow, and we still don’t know how, sorted it all out and the day that we got home from hospital she told us that AJ had been accepted at the school we wanted. So if anyone needs an advocate for a child with disabilities or special needs, let me know and I will introduce you to Emma.

So, Hurrah! You have got to grab all the ‘hurrahs’ you can get. Ava-Jane’s home, she is stable for now and I have got a top wife. Hurrah, hurrah, hurrah! Happy Valentine’s, Fo, I think it was some time around now. We did have a lover’s tryst when we passed, like two ships in the sea (well like one Postman Pat’s van and my golf buggy) in the Thornhill Park and Ride, so romantic, see pic:

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I got artistic and applied a filter. I took this pic while AJ was still in hospital and I think the Noir filter gives it a bit of a melancholic air. I do love her eye though.

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Fear and loathing in the John Radcliffe

My paraphrasing of the title of Hunter S Thompson’s great gonzo novel is because his description of terrifying drug withdrawal symptoms is probably quite close to what AJ has been going through for the past couple of days.

I have missed the worst of it but Fo has had to sit through two nights of fear, screams and hallucinations. Still today, when she has generally be quite cheery, she keeps on pointing at an imaginary man, who she has been seeing. It could a form of PTSD after being awake and aware, fully tubed-up and plugged-in in intensive care. It could also be a negative reaction to one or other of the sedatives that she has been given, which are supposed to help with the withdrawal symptoms from the heavy doses of morphine that she has been on.

It is always very hard to know what is going on inside her head. It must, in some ways, be quite lonely when you want to communicate and you don’t have the words to express what you want to say. And at times like this, when she is obviously going through a traumatic experience, which she needs to tell us about, only being able to point and say “man”, must be particularly hard.

I came in this morning to spend the day with her and then, thankfully, Helen arrived to take over for the night. Helen has been looking after Ava-Jane for years and knows her as well as anyone and hopefully she won’t have too bad of a night. It has been wonderful how people have rallied around, with yummy food deliveries from lovely people, roast dinner at the neighbour’s or Fo’s sister coming to hang with AJ for a bit.

Because Helen is here tonight, I get to sneak off for a …

Kebab! I think this is probably the first kebab I have had sober!

And while Helen is with AJ, I am up in Ronald McDonald House. It might be a glaring bit of cynical corporate sponsorship but having a room to stay, two floors up from AJ is a godsend. It’s important that one of us is around most of the time so we can catch all the various doctors who are liable to turn up at any moment. The medical side of things is getting increasingly complex.

As I think I have mentioned, trying to coordinate between so many factors, all of which are attended by different teams of specialists is a bit of a head fry. Generally, if you are putting in a gastric tube, I guess you would have to check that the patient is otherwise well and then you would look closely at their tummies and proceed with the surgery. But with AJ, there are so many other factors: any surgeon needs to bear in mind that she has got a dodgy heart and also that any infections would be very bad for that dodgy heart. They might also need some input from the oncologist because, having had leukaemia, her natural defence system might not be up to scratch and might struggle to fight an infection… which would be bad for her heart, see above. And finally the anaesthetist also needs to be aware that AJ has epileptic seizures, which will be exacerbated by their anaesthetics, and also by any infection, see above, again! And of course, she has got Down’s Syndrome, which probably means that her immune system is not great at, you guessed it, fighting off infections! And she is functionally non-verbal and in a wheelchair, so even the Play Specialists have for things to factor in as they jolly her through her convalescence.

As ever, we are on quite a steep learning curve, now adding diseases of the blood to the long list of bodily mishaps that are available, most of which Ava-Jane seems to have had. My poor little brain does struggle trying to keep up with it all. Just today, I was expected to decide whether it would be better for her to have her next heart operation at Great Ormond Street Hospital in London, where she had her previous operation or the Southampton cardiac surgeons, who are are part of the same team as her Oxford cardiologists. Who knows?

So, when I am with her, I try to do what I do best, namely act the fool. We managed to get out of her room for a bit and see a magician. I made the balloon sausage dog in the main pic of the post, handicrafts have never been my thing! Somehow the Coliseum appeared in the picture we are holding and I have spent quite a lot of time wearing a puke bowl as a hat, which Ava-Jane thinks is hilarious. In fact she made all the nurses who came in wear Dada’s hat.

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Very quick update…

I know that lots of people have been following AJ’s situation and as things have taken a turn for the better, I thought I should send a quick update.

She is out of the Critical Care Unit and back on a ward. Ava-Jane being Ava-Jane, they still don’t really know what happened, it’s a bit of a mystery. They will keep her in for a little while (I hope!) to monitor progress.

I think the pics below tell their own story, so I think I will leave it at that. Thanks for all your thoughts/prayers, they are very much appreciated.

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“Things moving in vaguely the right direction”

The title of this blog post was the assessment of the nurse who took over AJ’s care this morning. It’s Tuesday as I type… I think – it’s very easy to lose track of time in here.

She has definitely stabilised and the really angry red blotch round the entrance to her feed pipe has quietened down a little.

They are reducing some of the medication she is on for blood pressure and the sedatives. So she even managed to open her eyes a teeny bit though she is not focussing or anything.

UPDATE: I am now typing on Tuesday evening and she is still progressing well. Fo tells us that she is awake and responsive, which obviously means that she now wants to pull on all of the very tempting tubes and wires that she has arrayed around her. See pics:

And that’s what the PICU looks like. Lots of kids laid out, totally sedated plugged into various machines. It’s very hard watching families come to terms with devastation. I think Fo and I feel like those gnarled old vets that always appear in any Vietnam film, where we can see ourselves in the faces of parents realising that nothing will ever be the same again. In just the two days we have been there, we have seen:

  • A teeny one with meningitis
  • Two teenagers who were mown down by cars
  • Another weeny one with suspected leukaemia. I had to tread quite carefully with this family when I was chatting to them. I wanted to let them know that the cure rate for childhood leukaemia is excellent these days while making light of the fact that in AJ’s case the cure left her with severe and permanent brain damage… and that no one had ever seen this happen before. UPDATE: It turned out to be TB… I think that’s a good thing.
  • And a girl with a syndrome that I hadn’t heard of before who goes to the school that we want AJ to go to. She was in for an infection brought on by aspirating food, which might be what happened to AJ, so they have got all sorts in common and might be friends for life!

So what we are hoping for is that she gets promoted from PICU, the Paediatric Intensive Care Unit to HDU, the High-Dependency Unit. These are both part of the CCCU – the Children’s Critical Care Unit, I know these do all sound like the official names of Warsaw Pact countries and it does make navigating the corridors of the hospital quite complicated. Though I do like the sound of PICU, it sounds kinda cute even if it really isn’t.

Just had an hour-long conversation with a Hungarian cardiologist who had a very long name with lots of consonants, I tried to make a note of her name but it started, “Szp” and at that point, I gave up. And she used very long words with lots of vowels, which I found rather hard to note down as my iPad was furiously auto-correcting (“anaesthetist”??!!)

As I think I said in the previous post, this intensive care unit is very business-like. To a certain extent parents really don’t play much of a role. Everything that is going on goes way above the head of a lay person and as all the children are heavily sedated, parents can’t even fulfil the morale-boosting role that is so crucial in the convalescent stage. All we can really do is to try not to stumble into any of the delicate machinery that’s keeping our dear ones alive. The nurses are amazing, they are, to me, the backbone of the NHS at all levels. We had a particularly lovely guy today who could really explain things to me in terms that I understood. I hope that he is around when we bring Otto in as I think they would chime. Otto wants to become a nurse and this guy would be a great role model.

But I have to admit I have been getting a little shirty with some of the doctors. The whole medical thing has become very, very complex, far too complex for this bear of very little brain. The trouble is that as she has got a very cobbled together, Heath-Robinson heart, it is very susceptible to any sort of infection and this is some sort of infection. She has also got a problem with her aorta (too many vowels again!) that she was operated on six years ago. (This is a post from back then Deja Vu It’s quite funny that I was joking about deja vu all that time ago – we really have seen it all before.)

And because her heart is so very delicate, we need to proceed with extreme caution with any further interventions. But something went wrong. And we have been given lots of conflicting information about what this might be. The obvious thing is that she recently had a hole punched into her stomach, that got infected and this led to the sepsis throughout her body. But possibly it is not quite that simple… it never is!

So when I managed to corner a doctor, I was quite determined to get some information. At first she batted me away telling me she had another appointment but then, to her absolute credit, she came to find me and took me to a private room and talked at me for an hour. I wanted information… I certainly got information. Far too much for me to take in to be honest. She wouldn’t even let me take notes. Anyone who has ever worked with me will know that I like to take notes. I think that, for me, jotting things down helps me process information. But she was great, completely on it and able to explain what the problems were (Teeny little Brexit snarky comment, if I may – thank God we have broken free so that we are able to send these foreign types who keep our full-blooded British babies alive back home).

At the end of the hour, I tried to summarise, “So, what you are saying is what we already knew – Ava-Jane is just incredibly unlucky .”

“Yeah, that’s about right”, she answered.

Because what we do know is that if there is a 1 in x number of chance of a complication, AJ will be that 1! If it is a 1 in a thousand chance of having Down’s Syndrome, a 1 in a million chance of being allergic to chemo after the chemo or a 1 in ten thousand chance of a PEG insertion leading to sepsis, as I say, she will be that 1. She’s unlucky.

But unluckiness is not something that doctors will factor into their risk assessments, it is not something that makes sense to the scientific mind. But AJ is definitely extremely unlucky… that much I know!

And because the information that Dr Szp… was so complex and she hadn’t, after all, allowed me to take notes, I didn’t think I would be able to regurgitate it back to Fo without it becoming a particularly unamusing game of Chinese Whispers, I asked Dr Szp… to come back to talk to my wife.

She marched off along the corridor, promising that “I’ll be back” in a Central European accent that sent a faint shudder down the spine of this child of eighties cinema.

And that’s the thing, doctors don’t really think in the same way that normal human beings do. They are so focussed on the symptoms, the ailments, the diseases, that they don’t always look up to study the person round their diagnoses and beyond that to the people round the person with the symptoms, ailments and diseases.

I had a darkly funny exchange with a doctor on Saturday – the morning after the night before.

He described himself as an infections doctor  and came to visit to tell me that they had done an analysis of her main infection site and told me that “The good news is that she hasn’t got one of the flesh-eating infections.”

“What the actual F?”, thought I. Who the fuck said anything about a flesh-eating infection!? What the fuck is a flesh-eating infection!?

Though to be fair if you do have to break the news about flesh-eating infections, it is probably best done in the context of telling someone that their beloved daughter does NOT have a flesh-eating infection. Everything else is going to sound like a walk in the park after that. Sepsis, well that’s a relief, isn’t it? At least it isn’t one those dastardly flesh-eating infections!

As you can see from the picture below it is somewhat ironic that one of the main reasons that we wanted her to have her stomach PEG was so that she would not have a tube taped to her face and she would look prettier… I am not sure how that is working out:

So, I am back home, having spent the day here to recharge batteries. I try to treat myself, so we had a nice steak meal and I got a good bottle of wine.

For me a bit of escapism is key to getting myself through it all. I received a delivery of the most recent book in a long-running saga of Anglo-Saxons vs Vikings. This is just what I need at times like these, it’s the kind of book that might say things like:

“My heart sang as I plunged my blade Death-Bringer between the ribs of my enemy.” or

“We stood and we died there in the mud in that Shield Wall”, you gotta love a Shield Wall.

When AJ had leukaemia I got into a series of novels that were big in the geeky community, you might have heard of it – A Song of Ice and Fire, or Game of Thrones. These were the ideal kind of escapism at the time. Side note: the TV series finished poorly because George RR Martin never did finish his series of novels so the show runners had to complete the story themselves. They were great on Dragons and Zombie Ice Warriors but they are not the storytellers that Martin is, so the ending was crap. 

Otto and I also have the escapism that we share, at the moment it is a series called The Witcher, which is full of lots of gribbly monsters, arcane magic and hard to follow timelines, and pecs, lots of very ripped pecs. Because we need to keep Otto on a level during all of this that it happening to his sister and for Otto, keeping on a level, means talking utter shite. By shite, I mean, for example, a deep analysis of what is and what is not cannon in the Star Wars universe. We thought we were going to binge a couple of episodes of The Witcher this evening in the two-hour slot between supper and his bedtime, but we realised that we only had one episode left, so we decided that meant we could pause a lot to discuss where the timelines converged and exactly what powers each of the witches possessed. This is the kind of shite his young mind should be focussed on; not whether his darling sister will make it through the night.

What we can’t watch is Doctor Who. That’s the one programme we watch as a family. We can’t watch it until Ava-Jane is back. It is a ritual in this household for AJ and Otto to cuddle on the sofa and watch what she calls “Dodo ‘Oo”. She just likes the communal spirit and the music, we all have a big headbang to that. So we will be keeping the Doctor Who episodes until she is back here with us.

*I have set the featured image of this blog as another of my aunt Paula’s pics. It’s me and AJ cuddling, which is what I would like to be doing.

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You really couldn’t make this sh*t up!

Apologies (sort of) for the x-rated title of this post and apologies (sincere) for the x-rated pics below, but you had might as well see the sh*t. To compensate, I have headed this post with my favouritist ever pic of Ava-Jane, taken by my aunt Paula. You’ll have seen it before but it’s beautiful and hopefully makes up for the pics I will leave at the bottom of the post – not for the squeamish, be warned!

I have just come back from a long walk with the dog to imbibe some country air before heading back into the chemically-laced atmosphere of the hospital.

Ava-Jane was moved from the Stoke Mandeville to the JR PICU – Paediatric Intensive Care Unit because she was getting worse and worse and needed to have treatments that a general hospital could not provide. I had titled a recent post “Back where it all began” but actually being back in PICU predates even this blog which I have been tapping out for over eight years now. The JR PICU is where Ava-Jane had her first heart op.

Intensive Care Nurses and the special troops of the NHS, the elite, the best of the best. They are Napoleon’s Imperial Guard, the Varangians, the SAS. What they might lack in bedside manners, they make up for in expertise and a laser-like focus on the job in hand. There’s a nurse at the end of each bed with a control panel worthy of a Starfleet Commander (I am sure some Trekkie will correct me on that one.)

It is all moving quite fast and all sorts has happened since I last posted, which was only two days ago though it feels like a month. The infection developed into full blown sepsis and, as is AJ’s way, it is not at all straightforward. You’d think that the problem was fairly obvious – they punched a whole in her stomach a week before, the wound went all red and nasty, that’s what the problem is surely… well apparently not. They still think it started there but they were then worried she was having some sort of kidney failure and now it looks like her heart is under threat. Obviously her ticker has never been her strongest point and there was always a worry that an infection could cause problems. Her heart is held together by bits of tent and cow and she had a growth in her aorta which seems to have come back, so poisoned blood going through it was never going to help. I am always full of praise for the NHS, especially the nurses, but her PEG surgeon should, apparently, have checked her heart before putting another hole in her.

I have just got to the hospital and she actually looks better than in the photo below that Fo sent me last night. She has got fewer tubes and wires and a little bit of colour in her cheeks. They are keeping her in a heavily sedated state so there is really little we can do. The PICU is an austere place, tucked in the grottiest of basements far from the main Children’s Hospital. There are no toys and none of the cheerful, bright colourful murals that you find in other kids’ wards. The children here are all out cold, so there is no need for this kind of frippery – this place is businesslike, the nurses are businesslike and the business is all about getting very sick children well enough so that they can be moved on to wards with toys and colourful murals and play specialists. You also don’t get a bed, not even a camp bed by hers. Luckily my old buddy Clare can put me up in Oxford.

Another old, old friend, Ali was here for some time to give Fo some support. One of the bright points of times like these is the offers of support and warm messages from friends and family. Whether it is my sister offering to brings food from Nottingham, Fo’s sister and family taking Otto off for a jolly, Lucy V doing some ferrying and getting emergency pizzas, our Workaway Shael and our lovely, lovely neighbours running things at home, it all means so much in a moment of crisis.

 One of the hardest things this time round is how it is hitting Otto. It’s one thing toddling around hospitals with your sister laid up when you are five, you are slightly oblivious to it all and you can enjoy the trove of toys they have. But now he is is thirteen, he understands all too well the implications of what is happening to his dear, dear sister. He is not great at vocalising his feelings (teenage boy!) and I can be quite insensitive to what he is going through as he chooses to lose himself in his computer games to distract himself, which is what he would choose to do under pretty much any circumstances.

I suppose I had better publish this post, I do find it strangely cathartic being able to write about AJ and all her travails and it gives me something to do during the long, long hours sat by her bedside listening to machines ping and hoping she is on the mend.

I have seen my daughter wired up like this too often and it gets harder every time.

November 2009: Heart Op 1 (JR Hospital PICU)

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February 2014: Heart Op 2 (Great Ormond Street Hospital)

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February 2020: Sepsis (JR Hospital PICU)

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*small mercies note: I needed something to distract from the political scene and this certainly has done the trick.

The rugby is one in parents waiting room and England are losing. After the traditional glorious loss from Scotland, that’s all I can hope for.

 

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Happy Brexit Day One and All!

Don’t worry, I am not going to say anything about Brexit. This is just an update on AJ.

What better way to celebrate than being pooed and vommed on by my darling daughter and then having to rush into A&E.

The Stoke Mandeville hospital in Aylesbury on a Friday is a jolly place to see in Britain’s great day. Quite a lot of dodgy types lurking and that’s just in the children’s room. I overheard someone muttering “I am never coming back here again”, as if they had received poor service at a restaurant they had read about on TripAdvisor.

We don’t quite know what happened but she suddenly came over really poorly this evening. She had been progressing fairly well since she got back from her op. She has obviously been in some pain and been sick a little. But she was well enough to have her first day back at school. It seemed to have gone well, she came back quite chirpy and the school nurse didn’t report anything.

Dawn, the nurse, knows her as well as anyone does medically. One of the great sadnesses of AJ going on to secondary school will be that we will lose our connection with Dawn. She has been a massive support to Fo over the years and is the health professional we would turn to first if we were worried about her.

Anyway all of a sudden, AJ started wailing. She looked in real pain and the area round her wound where the tube was inserted was red and inflamed. Then she started projectile vomiting and pooing. So as I say a befitting way to toast a truly terrible day.

So it’s another night in hospital for me and the girl. At least we have got a room, which is a massive relief for me at least.

Doc has just been. She was umming and aahing about whether to give her antibiotics intravenously or not, so I told her to just whack ’em in. She has descended so quickly this evening it feels that she needs quick action. She also confirmed that we would be staying the night. I obviously do prefer my own bed but having the professionals around is quite reassuring.

Anyway better stop scribbling, I will need to help with canulas and so on.

Update! It turns out that A&E wards do have a TripAdvisor style rating system.

I am not sure how this would work. What if the best A&E experience I had ever had was in a hospital in the Outer Hebrides? Should I be telling any sick friends I have not to settle for second best and head north?

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Spot the difference

Can you spot the key difference between the main pic of the post and, for example, this one?

Yes… no tube!

We finally managed to get her in for the operation that we had been trying to organise since the early summer. She now has a PEG Gastronomy tube inserted straight into her stomach. I have always been a bit emotionally resistant to this, as I think I have mentioned. It feels like an acceptance that this is a permanent situation and she won’t be eating “normally” ever again. Sure, this is reversible and if she starts to be able to take in food, fluids, and, crucially, meds orally again, it can be removed. But I reckon they wouldn’t have done this operation if they thought this was going to happen any time soon.

On the other hand, it should make feeding her a bit easier; it will be nice for her not to have a tube stuck to her face and going into her nose and down her throat and, most importantly, she will look prettier for these blog posts!

Ava-Jane being Ava-Jane, she obviously had to complicate things a little. Her surgeon had mentioned that it was generally a very simple operation but that there was one potential complication that required a camera being inserted through her tummy button. He told Fo that he had only had to do this on four occasions in the over 500 times he had performed this operation. Well, he has now notched up a fifth just before he retires. Luckily Fo was the one who was here during her operation as this complication meant it went on for longer than expected. I start to get very jittery if these things drag on. I hate having to watch her being put to sleep and waving her off as she gets wheeled into an operating theatre.

In the main pic, she really is putting on a brave face for the camera as she has been suffering a bit since she came round. Inevitably the operation and the anaesthesia has provoked her seizures to come back after a very quiet couple of weeks. Nothing quietens down her seizures more than us wanting her to have seizures during an observation. But she has had quite a few big ones since I arrived last night. She has had the full range: the ones that look like “classic epilepsy” where her eyes go all flickery, the ones that Otto calls her “Ninjas” where her arms tense up suddenly and then the long-lasting ones where she is all twitchy and out of it.

You’ll see she has her Brave Little Lion with her. This was a gift from our friend Tash, who has done more than enough of this kind of thing herself. She gave Lion to AJ when she was in hospital for her leukaemia eight years ago and he always comes with her so that they can be brave together.

Hopefully she’ll stabilise soon, the effects of the anaesthesia will wear off and the pain will subside so she can come home. I don’t think it will be today though – Fo was hoping to get her home swiftly but I do prefer it when she is surrounded by nurses and other medical professionals. So in the meantime AJ and I are set up as we have been on so many previous occasions with her watching Peppa Pig on her iPad, while I tap out a blog post on mine with the cricket burbling away in the background. She loves grabbing my headphones to listen to a bit of cricket herself, that’s what she is listening to in the photo above with the headphones.

In other news, we have got a new car! We have replaced our ancient, clapped out Kia with an ancient, not quite so clapped out, Postman Pat van. It’s a Kangoo called Roo (see the number plate). We don’t think it’s a long-term solution as it is rather weeny – we can barely fit the four of us in, let alone a carer and the dog is not impressed with her reduced space.

Speaking of the dog, here is Nonny looking rather noble on our sunny walk last weekend. I do like the way she made sure I had a pic of both sides of her head so we can appreciate her full beauty.

Oh, and some obligatory pics of AJ and me rolling around on the floor having fun!

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We made it!

Well we have finally made it into hospital for Ava-Jane’s video telemetry. This is what we were scheduled to do a couple of months ago but it was cancelled. There was a sudden free room so we grabbed the opportunity. As it was straight after Christmas, we hadn’t got our heads round it at all and hadn’t prepared anything. It was a bit tricky having to take my second day off work after a long break! But here we are…

The idea is that she has got a load of electrodes stuck to her head that pick up her brain activity and display it in chart form with all sorts of wiggly lines. As this is video telemetry, she also has a camera trained on her at all times. We are supposed to click a button every time she has a seizure so they can read the chart and see what was going on at the time and what her seizure looked like. We have done this at home before but this is a step up from me trying to train my GoPro camera on her and all of us running around and hoping not to miss the seizure or forget to click the button.

What is the same as when we have done it before, is that she has hardly had a sodding seizure during the last three days! She is on absolutely flying form and even though we have been trying to sleep deprive her and reduced her meds in order to provoke seizures, she only had one on the first night she came in and none since! We should really have lodged her at some plague hospital for a couple of days so that she was really unwell, that normally does the trick.

This is what the kit looks like:

And here are some pics of AJ looking progressively less impressed as she gets the electrodes stuck to her head and then heavily bandaged in place. Actually the bandaging is a very good thing as the alternative is glue that stays in her hair for an age.

I am just in for the one night to give Fo a bit of a rest, so a bit more hospital life for me. This does feel different though as she is not in for a treatment because there is nothing immediately wrong with her, so I haven’t got the underlying feeling of panic I have had on previous stays. Also being in a room rather than sleeping on a bunk in a ward makes a lot of difference.

Wow, I have just taken her to the loo and that’s quite an operation! She has got a couple of long wires attached and then a whole cluster of mini wires in a bag, so manoeuvring her onto the toilet seat without yanking any of them out is a bit of a delicate dance… and I have got two left feet… and AJ is an obsessive yanker of things – she like nothing more than pulling things off tables as she is pushed past. So all these wires are just too tempting.

Here’s a nice pic of our Xmas-day walk with the lovely Ting. I think Otto will be pleased that I have chosen one where he has his back to the camera. He makes like a celebrity being pursued by the paparazzi if you try to take a picture of him these days.

Some of you will have noticed (or even missed) that any comment on politics is conspicuous by its absence and that is how I mean to continue. I am trying to detox from politics, it has all been far too painful recently and a complete waste of time from my point of view. So I plan to get into gardening and planting trees and really hoping that I am to be proven wrong in my predictions for how Brexit and the Johnson premiership will pan out.

And in the spirit of fairness, I was quick to condemn the Conservative’s mismanagement of the NHS for us having appointments repeatedly cancelled and then all of a sudden there is a bed, in a room with all sorts of fancy equipment… So, it seems like it’s all sorted!

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Back where it all began… NOT!

This was supposed to be a missive coming from “back where it all began”, i.e. a room in the JR hospital, with me tapping out a blog post on my iPad from the bedside of my darling girl. See this post from 2011 as an example.

AJ was supposed to be in the JR all of last week for an observation. This was great news as she had not been down to have this until next February. Boris has fixed the NHS, huzzah! (spoiler alert: he hasn’t!)

The idea was that she was going to be locked into a room equipped with CCTV with electrodes on her head to try to work out what the correlation is between her seizures and what is going on her head at the time. We’ve tried doing this out home a couple of times and both times it was rather inconclusive – it relies on us hitting a button just when she is having a seizure and having my GoPro camera trained on her at all times. Both times she has either not had a seizure for the duration of the exercise or we have missed them when she does. So this was supposed to be the big one – full 24-hour observation for five days – this time she was not going to escape. We had got Helen up to help spend time in the hospital, I had taken time off work and we had worked out transport arrangements – no mean feat when you two cars have severe limitations – mine is an electric that doesn’t quite make it to Oxford and back on one charge and Fo’s van… that sometimes starts – but probably not if it has been sitting in a hospital car park for a week.

But come Monday morning… ummm… no room. Call later… no room, maybe try tomorrow… no room. Well maybe you would like to consider conducting the observation at home… would that be the same observation that we have tried twice already and has failed twice already? Should I be charging my GoPro?

The long and the short of it is that it looks like this will now go back to its February slot – Boris has not fixed the NHS, boo!

But as luck would have it in terms of writing the emotive “back where it all began” post, Ava-Jane had another appointment. This time she was going to be in the JR to have her nose feed tube replaced by a PEG that goes straight into her stomach. I have always been a bit conflicted about this operation – having a tap straight into your tum feels a bit permanent but given that she has had a nose tube for about six months now, and she chokes nearly every time she eats, it’s time I face the fact that this is a permanent situation. And, of course, she will look cuter for the blog post pics without her tube and dressing on her cheek.

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So more reorganisation of life – days off booked, vehicle juggle planned: Fo, AJ and I go into Oxford together, in her van, leaving at 5 a.m. Otto goes to cousins for night – they will drop him at drama next day. The op happens, I remain in hospital – Fo goes home with van. I stay the night with AJ and bang out the blog post. Fo then sells AJ’s electric chair, picks up Otto, comes to the JR. I go to visit my podcast hero in a different hospital in Oxford, while Otto and AJ hang (there is no one better for her morale than her brother). I then return to JR and go home with Otto in the van. I have then got to get myself to Heathrow to go to Madrid the next day but that is a tangent too far – only thing to add is that I need a charge point parking space!***

Simples! God, I am sorry for having quoted a meerkat and no, not “Simples” at all. None of it happened, well, I hope that the trip to Madrid will still go ahead, but hell who knows what the future holds?****

It was another cancellation – no beds. In fact, they haven’t been able to have patients in for routine admissions for six weeks. It’s like there is some complete disconnect between what the medical staff are doing and the actual administration of the hospital. It’s like someone removed a whole layer of bureaucracy without really thinking it through. Or that something has happened to cause foreign nurses to leave the NHS. Just to pluck a stat out of thin air – 304 EU staff have left Oxford University Hospitals since 2016.

BOOM! am I going to go there? Yes, of course I am going to go there, after all, we are in mid-election frenzy, are we not?!

The Election… oh joy, oh rapture!

Now I am not going to blame the current Prime Minister directly that my daughter did not get a bed in a hospital but what I will say is that his continuing in that position gives me the collywobbles about the health service. After nine years of Conservative government, the NHS is on its knees but we are expected to believe that five more years of Conservative government is what it needs.  I think I might come on to trusting Johnson’s word below but we already know that his pledge to build “40 new hospitals” whiffs. It turns out that this is actually six new hospitals and then something called seed funds for the remaining 34. Could anything sound less built than a “seed fund”? We are about to plant a load of saplings and apparently you should only expect a third of them to survive and seeds are just wannabe saplings.*****

I really do not think we have a particularly awful bunch of politicians right now as a lot of people seem to think but I do believe that we have some astoundingly bad potential Prime Ministers and as Jo Swinson is very keen to include herself in that bracket, I include her.

But with the metaphorical gun to my head, forced to make a choice between Johnson and Corbyn, I would have to choose Corbyn. He is a bit thick and and a bit useless and is surrounded by some pretty awful people but compared to Johnson, I think he would be a less worse option.

He is not a Marxist******, he is certainly not a Stalinist; he’s a Socialist. What he is proposing is closer to Sweden than Venezuela. Plenty of reasonable countries have had Socialist governments, Spain right now, though maybe not in a few weeks, France during much of the 80s under Mitterrand. In fact Spain’s great flourishing of the 1980s was under a Socialist government. It is not that frightening. If you are very, very, very rich, you might under up just being just very, very rich.

GDP_ratio

I have been doing a bit of gentle trolling of friends and family on Facebook – I do seem to have quite a lot of Tory supporting friends and family on Facebook, so I get plenty of opportunities for this. So where I see a list of all the bad things Labour did during its ten years in power, I might might add a list of the terrible things Johnson has done in a few weeks. Or if there is a Labour MP excoriating the Labour leadership, I might pop up a pic or two of Conservative Grandees saying they do not recognise their own party in its current state. And when one friend had a post questioning whether there was anything less patriotic than not singing the National Anthem during a memorial service, I answered that maybe lying to the Queen was less patriotic than not singing about her. All good fun!

You might not like it, but at least Corbyn and McDonnell have got a plan. And it’s a plan based on a fairly long-sighted vision. And as I say, it is a plan that you might disagree with but at least there is something to disagree on.

Johnson’s one election promise is to “Get Brexit Done”. The Conservatives will tack on some focus-grouped pledges – people are worried about the NHS, let’s promise to build some hospitals, see above. We were once the party of Law and Order, so let’s promise to train more police constables, we should at least try to get numbers back to somewhere near where they were before we cut them all – it’s 20,000 new constables to replace the 21,000 that have been cut since 2010.

And beyond that they are just dealing in the grubbiest, dishonest politicking. They went around saying they had costed Labour’s spending at over a trillion pounds – a trillion just sounds made up for starters. It was all rubbish and they haven’t even costed their own spending. During the leader’s debate, they mocked up a Twitter account called Fact Check UK and created a bogus website called Labour Manifesto.

And of course, the grubbiest lie of them all is that they will get Brexit done. Even if everything goes swimmingly, we will have years of negotiating trade deals with the EU, who we already have a trade deal with, and years of negotiating trade deals with countries that we already have trade deals with because we are members of the EU. Leaving the EU will not “Get Brexit Done”, and Johnson knows it.

It’s this dishonesty at his core that makes me think he is unfit to be Prime Minister. For democracy to work, the electorate needs to have a vague sense that they can believe what they are being told. Corbyn and McDonnell will struggle to get half of what they promise done – all sorts of things will conspire against them but at least we know what they want to do. When the only discernible motivation behind Boris Johnson’s political career is the desire to be Prime Minister, it becomes very hard to know what he wants to do now that he is PM.

This blog post really is not going anywhere, sorry! I had grand plans to post a stream of evidence of the mendacity of Boris Johnson but I think we have reached the same stage that has been reached in the US with Donald Trump. Proving he is a liar does not detract from his popularity. They operate on a different level than other politicians or maybe more terrifyingly, than previous politicians.

So I think that I will just post a series of random links below that I have collected up if anyone wants to look into them further and I will get back to writing about Ava-Jane.

As is probably obvious from the disjointedness of this post, I have been going at it over a number of days, with a trip to Spain midway and there have been some AJ events to update on. She and I manned the Lucky Dip stall at her school’s Xmas Fayre. We made for quite a good double act and pulled in quite a lot of punters.

AJ-JumbleSale

Apologies for the sad attempt to disguise the kid who is in the pic and I hadn’t asked for permission to post online. 

Today we had one of her parent’s meetings on steroids. Where with Otto, we are lucky to have five minutes with a couple of his key teachers; with Ava-Jane it’s a mass meeting. This one was especially crucial as it she is transitioning to secondary school. We want her to go to a school that’s near to us, in Milton Keynes, which happens to be outside the county of Buckinghamshire. This throws up a host of administrative hoo-has. It has been incredibly beneficial that her school and her main hospital are right next to each other as she spends about the same time in each (I exaggerate for effect), so it’s handy to be able to shuttle between the two. But the nearest special needs school that we also think would be a good fit for AJ is just over the county lines and like some 1930s bootleggers, we are are going to take out lives in our own hands and run the gauntlet.

What this does mean is that we have to have AJ’s Education, Health and Care Plan straight. AJ has been lucky enough to be at an amazing school with one of the great people of this world, Caroline, as her teacher. She has had various lengthy documents written about what her needs are that are invariably way off target but as she has been surrounded by people who know her and and have her best interests at heart, these documents have not been that important, but now that she is going to be sent off on the next stage of her life, she needs the paperwork to be in order. And that what this meeting was all about.

We brought some muscle with us in the shape of a mate from our Down’s Syndrome association who has become a professional advocate for families with special needs and she knows her shit. We had a two hour meeting banging out the exact meaning of statements along the lines of “she doesn’t like to focus on an activity for more than ten minutes” (= she needs a member of staff on hand who is able to rotate activities on a ten minute cycle). I am an editor of books for learning the English language but even I was surprised at the importance of getting the language exactly right.

There were ten people at the meeting and we had to accept apologies for the absence of at least a couple more. AJ has such a spectrum of needs that she gets a fairly full spectrum of needs’ carers – occupational, speech and physio therapists, a social worker, visual impairment and the two people who know her best, Caroline, her teacher and Dawn, the nurse: two incredible people. I think they are both finding it quite hard with AJ’s seizures. It really does seem to pain Caroline how they set AJ back when they were making such good progress together. And obviously Dawn is just left to pick up the pieces when AJ is in a bad way. I did feel immensely proud when Dawn gave me me a “well done” for inserting a feeding tube this weekend after AJ had yanked it out.

And the upshot of the meeting was that we needed another meeting.

Fraudulent Campaign?

No one really wants to talk about the fraudulence and manipulation of the Vote Leave campaign during the Brexit Referendum for a number of reasons. It is nigh on impossible to prove. It looks like sour grapes. And most importantly no one ever thinks they have been manipulated.

But these things are true: The man who is our current PM and looks set to be for the next five years, led a campaign that paid a lot of money, more money than it was illegally permitted to do, to a company, Cambridge Analytica, that is known to have manipulated elections.

It is worth having a listen to this interview with Chris Wylie, the whistleblower who worked for Cambridge Analytica if you want to get an understanding how this company works.

Podcast

Reports not coming out

Back in more innocent times, even the whiff of a sexual affair or the hint of collusion with the Russians would have been enough to bring down a politician. Heck, the Profumo Affair, which had both, nearly brought down a whole government and sunk John Profumo himself for good. Johnson has got both! There is a police report about possible misconduct in a public office concerning his relationship with an American entrepreneur and there is a parliamentary report about Russian interference in UK politics. But fortunately for Johnson neither will be published until after the election. Phew!!

What interest could the voting public possibly have in knowing whether the Prime Minister is, in the words of Richard Nixon, “a crook”.

https://www.theguardian.com/commentisfree/2019/nov/13/tories-russian-money-report

Get Brexit done, my arse

https://www.theguardian.com/commentisfree/2019/nov/18/boris-johnson-get-brexit-done-tories-majority-eu?CMP=Share_iOSApp_Other

https://www.theguardian.com/society/2019/nov/24/nhs-winter-crisis-thousands-eu-staff-quit?CMP=Share_iOSApp_Other

Selling the NHS – what the US is demanding from a US/UK trade deal

https://www.globaljustice.org.uk/news/2019/nov/27/explosive-leaked-trade-papers-show-nhs-chlorinated-chicken-already-table-us-trade

**footnote: these two are linked. The more Johnson decides that he has to “get Brexit done” the more he will have to drop his trousers when it comes to negotiating a trade deal with the US.

General Johnson Dishonesty

The lies, falsehoods and misrepresentations of Boris Johnson and his government.

Pic of my niece Molly

She really has nothing to do with Brexit or Johnson, she’s just great.

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Hindsight Notes

***I did get a special parking place with charging but the bastards didn’t charge my car!

****Well, weirdly, I do now know what the future holds… it held a some sort of norovirus/gastroenteritis and spent a lot of my time in Madrid puking…

*****His promise of 50,000 new nurses also pongs

******I wrote this a couple of weeks ago but this is exactly how someone I enjoyed a lovely luncheon with this Sunday described Corbyn.

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I have got my eyes on you Boris Johnson

So obviously this is going to be mainly a holiday blog, with lots of cute pics of AJ in various action poses but come on, with politics dialled up to full batshit crazy, you will forgive me if I do meander down the ever-enchanting byways of Brexit.

So, the holiday. Well, we enjoyed our holiday in Lesbos with Neilson so much last year that we decided to do it all again, same place, same resort. No sooner had we arrived there than we were greeted by AJ’s great buddy from last year, Lottie. Fortunately Lottie’s family had been equally as unadventurous as us and decided to repeat.

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Dad Anthony and I spent a very fine afternoon watching the cricket and drinking Greek beer as Ben Stokes played one of the great, but ultimately futile, innings of history – just the way we like them to be.

We barely see Otto on these holidays as he gets into a gang of like-minded early teens who try to rub their collective minds free from the very concept of having parents. Until, that is, they want to go for waffles in the local village. I had to plead somewhat to let me publish this picture of him looking gorgeous but it does seem a little unfair when we have one very wonky child who now sports a less than attractive nasal tube, I couldn’t post one picture of our well-proportioned sprog.

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These holidays just works for us. The kids are completely looked after, so Fo and I can spend some time together with nothing to worry about or just chill with a book. We were a little worried because last year we had the wonderful Siobhan looking after AJ and didn’t think anyone would be as good but Chloe made sure that AJ had a marvellous fortnight and made a really deep bond with AJ. I think they both read this blog, so I had better try to avoid a Neilson Nanny standoff!

But obviously Ava-Jane actually loved Nathan more than either of the girls…

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So I have added some cutesy pics, written a couple of paragraphs about our holiday, anything else…? I went sailing a couple of times – capsized right in front of the beach with loads of people watching… Essentially it was pretty much the same holiday last year and so if you want more pics, you could just check my post from last year: Amongst the Lesbians Soooo… ummm… does that mean I can write about Brexit now, please…?

Even Fo thought I should write about Brexit, just possibly from a “just leave me alone, go and tell it to your keyboard” kind of way.

Now keen followers of this blog might have picked up by a close analysis of various texts that I am not a massive fan of our dear leader, Mr Boris Johnson. I have recently been told in a professional context that one should avoid saying “I told you so”, but this is not a professional setting and I did ****ing tell you that he was going to be a ****ing disaster.

The man is not fit for office, he has barely been Prime Minister for a couple of months and his stellar achievements include:

  • Losing every single vote that could be squeezed in during the brief window between when MPs were on holiday and he closed down Parliament.
  • Seeing his majority got from 2 to 1 in his first week, then from 1 to 0 during his first speech in Parliament… and then it was at this point that he chose to fire loads of MPs meaning he has now made himself a minority government of -20 odd!
  • Seeing his own brother resign from his cabinet and from politics.
  • Firing Winston Churchill’s grandson! and then the Duke of Wellington resigns – you could not make this lot up. Those are the ones that sound good and funny but he had also got rid of some very eminent Conservatives, while at the same time being sued by an ex Conservative PM, John Major.
  • Having to publicly deny that he lied to the Queen.
  • Speculation about whether he would have to go to prison if he actually stuck to his word + speculation about whether he would indeed die in ditch if he actually stuck to his word. For all you Boris fans out there, worry not – he won’t be going to prison or dying in a ditch because of course he won’t actually keep his word.

Oh, enough of the bullet points, you get my drift – he has already drawn up quite a list of chaos, the kind chaos that reminds me only of one other world leader – Donald Trump. Like Trump he seems to get away with stuff that would sink other politicians. Generally even having to have to deny lying to the Queen would be the end of most Tory PMs in the same way that just the one rape allegation would finish most Republican Presidents.

Obviously you can take these comparisons a bit too far, but I think Johnson resembles Trump in one other crucial way – neither of them had any great vision for what they would do once they had grabbed power beyond the grabbing of the power itself. I don’t think that Johnson is a Brexiteer at all. There are plenty of quotes I could trot out where he makes quite a cogent case for staying in the EU and points out how the difficulties of leaving the EU outweigh any potential gains that might accrue from leaving. How right that Boris has proven to be.

I really have no idea what is going on anymore. But one thing I am sure of is that this is not the Conservative Party anymore. It has been coopted by a fanatical wing. You can see it in Boris Johnson’s ever more haunted face. He has only been PM for a couple of months and he has the kind of faraway stare that it took Thatcher and Blair a decade to perfect. Maybe when he gave his mad rambling speech in front of the dragooned police cadets, when he somehow decided that trying to recite the arrest warrant was a good idea, he was trying to send a coded message, “I have been taken by these people… Help….”

And that’s the worrying thing – Johnson might not know what he wants, he might not have a vision but some of the people he has surrounded himself with do. They have quite a clear vision. Jacob Rees-Mogg knows the kind of England he wants to see – one where the state is stripped bare, with most of its functions sold off to private providers. He wants the most minimal regulations possible, where Johnson might jape about getting rid of “Elf and safety”, the likes of Rees-Mogg are deadly serious about it. They have now purged the Conservative Party of the sensibles and the lunatics have taken over the asylum.

And to bring it back to Ava-Jane and why, for me, Brexit is personal. Rees-Mogg appeared on the radio to talk about the planning, or lack thereof, for a No Deal Brexit. You can watch it here. Basically he accused the very eminent doctor who had warned that medical supplies would be at risk in a No Deal scenario of “Project Fear”. This Dr Nicholl specifically mentioned epilepsy medication, which made me prick up my ears. Rees-Mogg then went on to double down on this by comparing David Nicholl to Dr Wakefield, the man who ushered in the return of measles by linking the vaccination with autism. He did this in Parliament, thereby avoiding any possible suit for defamation. I know who I would believe between one of the leading neurologists in the country and the monocled revolutionary who has well-recorded opinions about the value of other people’s health and his own cherished opinions.

I asked on Facebook to be reminded of what the advantages of Brexit are. Because they had better be bloody good to be risking the precarious health of my little girl. Don’t tell me it’s just about the blue passports if we can’t get hold of the meds that finally seem to be making some sort of difference to AJ’s seizures.

In the unlikely event that anyone has read this far and in the even more unlikely event that anyone who has got this far might be a bit of a Leaver, please know that if you like the sound of a No Deal because it will just get it over and done with, it won’t. It will be a period of chaos while the Government has to go back and negotiate a deal with the EU and from a far weaker standpoint.

This is going to go on and on and on and on and on and on and on and on on and on and on and on and on and on and on and on and on and on and on and on on and on and on and on and on and on and on and on (this is fun!) on and on and on and on and on and on and on and on and on and on and on and on and on and on and on and on (god love you cut and paste) on and on and on and on and on and on and on and on and on and on and on and on and on and on and on and on (I had a rant at a Tory friend of mine where I just banged out load of statements starting with It was the Conservatives who… and I then pasted It was the Conservatives who did X, It was the Conservatives who did Y) much like the way I am pasting this is going to go on and on and on and on… I think you get the idea.

The only sensible thing to do is to just Revoke. Then we can get back to the things that really matter. Sure there will be some kerfuffle but before you know it catastrophic climate change will be upon us and I believe that rising sea levels will be the perfect way to take our minds off such trivialities as the backstop or indeed the whole concept of Parliamentary Democracy. Having watched nearly three seasons of the Walking Dead, I am well aware that the apocalypse does shake things up somewhat.

Don’t screw this up Boris Johnson – she’s got her eyes on you04 September 11-05-59 NATHAN-2_Chloe 1-1