9 reasons to love the British Library's Mechanical Curator

 

At heart this is a post about discoverability, access, and bringing things to the surface that might otherwise not be seen. The Mechanical Curator of the title is one way of the ways the BL has done this with their digitised images, but only one of many - the point is we all have collections which WOULD engage people if they knew about it, so why not invest some time in getting the message out their in innovative ways?

I ran some workshops for the British Library at the end of last year, aimed at social media 'improvers' (people already using it as part of their professional role, who want to get more engagement and measure their impact etc), during which I talked about Tumblr. I showed various examples and confessed my favourite Tumblr of all was from the BL themselves, the Mechanical Curator.

The Mechanical Curator is Tumblr blog which regularly (and automatically) posts images from 1,000,000+ the BL have scanned from out-of-copyright books from previous centuries. It has been programmed with some Artificial Intelligence - or as far as I can see, more like Artificial Whimsy - and becomes taken with certain shapes, symmetries, and themes, and posts these more often and in clusters. After its set up and tweaking, there's no human intervention - it just gets on with it.

Click the pic to open The Mechanical Curator Tumblr in a new window. Go and explore it! I'll happily wait.

Click the pic to open The Mechanical Curator Tumblr in a new window. Go and explore it! I'll happily wait.

I loved the Mechanical Curator before, but I love it even more now, because I got (my childhood friend!) Ben O'Steen, who is Technical Lead at BL Labs, to come along and talk to the group about the project, as he designed the whole thing. And he gave such an interesting talk about it, and I learned so many new things, that I felt compelled to write this post about how great the whole thing is. Not just in itself, but in what it represents about the new ethos of library sharing, which could be the very thing which ensures our continued relevance.

So here we go, 8 reasons why I love the Mechanical Curator and the project around it:

  1. It's the perfect use for a Tumblr. It's not a regular blog which just used Tumblr because it's fashionable, it's a short, snappy alternative to the BL's more traditional blogging output (which happens via Typepad)
  2. It helps people engage with the BL even if they wouldn't usually. On a micro-level, people stumble across the weird little Tumblr and its weird little images, and then they can either leave it at that OR follow the links to the BL catalogue for each pic, and engage with the Library through other channels. That's what social media should do for us; exist on its on terms, and as a gateway to other library content. On a macro-level this whole project gets people interested in British Library materials - people who would never visit or even really know about the BL normally - and then allows them to learn more about the organisation if they wish to
  3. It takes something vast and makes it accessible one piece at a time. Tumblr is very visual and, like Pinterest, when it first came along I wondered what the point was when we already had Flickr. In this case, all the images the Mechanical Curator brings to the surfaces are on Flickr anyhow. But a digital repository or a Flickr account provide such a MASS of materials, it can be hard to find a way in and make sense of it all. The Tumblr takes one image at a time and gets it out another way, broken down into smaller chunks, which helps people find it, access it, and then explore further
  4. It's just the kind of thing you want your national library to be doing. They've taken 1 million images and said: here you go, you can do anything with them, whoever you are. That's fantastic. Not only that but they've done so in a properly interesting and accessible way, with an emphasis on actually REACHING people with the materials, not just making them available in a vacuum
  5. Forget librarians as gatekeepers... When I first entered librarianship I was very excited about the fact that while in the past librarians were gatekeepers of knowledge and information, now we the gates were open and we were the sherpas who helped people find what they needed. This takes that anaology one step further and, in effect, brings all the content out from behind the gates and just puts it on the street, asking people to help themselves. I love that. We will get nowhere by trying to guard what we have, we need to give of ourselves as much as we can
  6. It's crossed over into pop-culture. My favourite Buzzfeed article of all time just happens to be this one: 44 Medieval Beasts That Cannot Even Handle It Right Now. All 44 are illustrated from the BL's images...
  7. The level of engagement is incredible. Sometimes you do all the right things to bring people in, but nobody comes. Not this time. Over the first 11 months, the images were viewed on Flickr 212 million times! I try not to put too much stock in views alone, but 20 million hits every month is hard to ignore. Not just that but every single one of the images have been viewed at least once, all but a handful 5 times or more. So despite the collosal scale and bredth of the collection, people are engaging with all of it
  8. People aren't just viewing the images, they're DOING things with the images. People are doing really creative things with the images: using them in art installations, free colouring-in books for children, as patterns on handbags... I love how this video from Joe Bell brings the images to life
  9. Including a huge movement to crowd-source some contextual information. Here's the wikipedia page (not set up by Ben or the BL) aimed at tagging all the maps found in the images with contextual and geographic information. As you can see, there are NONE left still to do: all 29,304 of the maps have been tagged.
 

It's not just maps - the community have tagged all sorts of things, providing the BL with groups and categories on its flickr page. Crowd-sourcing is great way of engaging a community and giving them ownership of something!

Finally, for some more context, here's one of Ben's presentations about the Mechanical Curator.

SO Can WE ALL do something like this?

As you can tell, I really think this project is ace. It's a template for what libraries can do with their collections - and although there's a tremendous amount of resource behind what the BL has done, we can all learn from it and apply some of their methodology.

Perhaps we can't all make a tumblr with Artificial intelligence, but we might know someone who can take Ben's code, freely available on Github, and apply it to another project. But to get distracted by the AI is to miss the point - the Mechanical Curator's greatest asset, for me, is taking something unmanagably vast and giving people another way to access it. So if your library has digitised materials which are out of copyright, don't just have them sat in a digital library! Get them out for people to happen across, via Tumblr, Pinterest or Instagram.

If you have collections which you own, or which are out of copyright, can you put them into the public domain and encourage people to take them and remix them?

Top Tip: Create your PPT for the web, THEN strip it down for live presenting

 

In my Presentation Skills training I spend a lot of time offering different ways of presenting information and ideas visually, so you can lose a lot of the words from your PowerPoint slides. After all, it is a presentation, not a document. It's not designed to be read - or at least it shouldn't be, else you'll leave your audience wondering if your presence as a presenter is even really neccessary...

Then later we discuss the importance of uploading your presentations to Slideshare to amplify their impact and reach a wider audience. So inevitably the most common question which gets asked after that is: "But how will this make sense to people who weren't in the room to hear me talk?"

It's a tricky question because in most cases, a presentation simply can't be fit for both purposes. Good live slides won't make sense without the presenter, and good web slides won't have been an effective communication tool in a face-to-face presentation.

There are basically three answers to this (that I give, anyhow):

  1. You make a different version that goes online
  2. You upload the accompanying notes or audio
  3. You accept that the online audience will have a different experience, and that's not the end of the world

There are times when I do all three of these, sometimes all for the same presentation (bear with me...). Let's look at each of them in turn.

Making different slides for live versus web

My main advice here is twofold: first of all make two versions of the presentation - one for the face to face presentation, and one to sit on the web afterwards - and second of all, do the web version first!

It is a lot easier to start off by putting in all the detail on the slides so that the presentation makes sense on its own without you talking over the top. It helps you shape your ideas, work out exactly what story you're telling with the presentation, and can be a useful aid to learning your talk (learning your talk is actually something I wouldn't recommend, but there isn't time to get into that here).

Once that's done, save a copy to upload to Slideshare or whatever, and then save a new version which you edit to strip out all the detail. The function of slides in a conference or training situation is to enrich and reinforce what you have to say out loud, help the audience understand and engage with your message, and last - but NOT least - to prompt you as to what you need to say. Not to duplicate it. The ideal slide (in my opinion) has perhaps one sentence on it, which crystalises the key message of that part of the presentation AND acts as a jumping off point to remind you of everything you have to say on the topic. So you take your detailed web PPT, and you strip them back to one or two sentences per slide (or go entirely word-free).

The key thing here is it's a lot easier to make detailed web slides and strip them down for live presenting, than the other way around. Making your live slides and then adding all the detail in afterwards takes ages. It really adds to your prep time and so isn't practical in most situations. Doing the detail first doesn't really add that much time on at all because it's part of the process that helps you create the narrative in the first place.

Incidentally, I don't use this option all the time - because it does take some more time. If the presentation is important however, it's worth it.

Providing further content to help explain slides

If you want to leave your slides beautifully simple but consequently ambiguous, you can provide some supplementary materials to help them make sense. For example:

  • If you've made notes you could upload them to Scribd, and then link to them from your presentation (and embed the Scribd document and the Slideshare presentation on the same web-page)
  • If your PowerPoint presentation has speaker notes (in that little box below the main slide in edit view) they will be added to Slideshare below your slides. The trouble with this is you need to upload specifically a PPT file to Slideshare, it doesn't work with PDFs - and if you're using non-standard fonts, which can be really beneficial, you need to use PDFs. So potentially useful, but not ideal
  • If you literally have a script of the whole talk, just provide that alongside the slides. If you don't use a script, and again I wouldn't recommend doing so, the only way to achieve this is to record the talk and then play it into some kind of dictation software to provide you with a transcript after the event...
  • You could add audio. Slideshare discontinued their webcast functionality (being able to add audio to PPTs once uploaded) last year, so really your best option for this is YouTube. In the past I've recorded my own talks using my iPhone in my jacket pocket, then used Camtasia to add that audio to slides - as in this example from South Africa - but that's a laborious process, takes ages, and honestly I'm rarely happy enough with any of my talks to want people to be able to hear and analyse them outside the in-the-moment conference environment... I would recommend recording your talks though, just for your own use - it's amazing how much you learn about what worked and what didn't
  • (If you do go down the YouTube route, don't forget to add the YouTube video to your slides on Slideshare too. Slideshare has so much reach, you don't want to just put stuff on YouTube.)
  • You could use Storify to collect the tweets from people in the room during your presentation and link to / embed that with your presentation - this is my preferred method as I don't use notes and don't like the audio options listed above. Even if you're not on Twitter I'd recommend at least considering this option
  • And finally, my super-advanced-mega-slideshare-hack: Slideshare displays whatever text you have on each slide, in the transcript below. (That's completely seperate from the notes field thing discussedearlier - every slideshare presentation has an accompanying transcript.) So you could add a full explanation of each slide, to each slide, but then make it invisible on the slide itself! (Either by writing in white on a white background, or covering it with an image, or using font-size 0.5.) So the transcript has all the info, but the slides do not. Good eh? [High-fives the internet]

Or, of course, just not worrying about it at all. Which brings us to the other way forward.

Just having the same version for both

Sometimes a presentation is too low stakes to worry about all this stuff. Sure it's not ideal that the slides don't make so much sense online, but what's most important is that they worked for the audience in the room.

Another way of looking at it is to view it as simply a different experience for the two audiences, rather than neccessarily a compromise or a problem. Your slides aren't as easily understandable for the online audience, but the fact they get the kernel of an idea rather than the fully-formed notion can be really interesting in itself. Just as the one-sentence prompt was your jumping off point during the talk itself, it's the online audience's jumping off point for their own ideas and further learning. That's no bad thing. Barthes would approve, anyhow.

An example of combining all three

The slides I put the most effort into ever were those I created for a keynote at the BLA Conference last year. And I kind of did all three things listed above.

First of all I did a different version for the web. Not a massively different version - but I included more detail in quite a few places, skipped to the end of some pseudo-animated parts, and changed the way I displayed certain images to comply with the copyright licences. I also removed a section which contained at its climax with a category C swearword (or is A the strongest category? I never know how that works) because although I trusted the audience in the room to understand it and not be offended, I coudn't be sure The Internet would do the same...

So what you end up with is slides which first and foremost aided my communication to 60 people in a room in Leicester (the face to face audience must ALWAYS be the priority!), but which at least made sense and provided some sort of jumping off point for over a hundred thousand people online subsequently. The only upsetting thing for me is one of the two fonts I used doesn't seem to render properly on Slideshare no matter what I do, but never mind...

I also provided a Storify of the tweets from the talk in the associated blog-post. And I didn't fill in ALL the gaps, as I really do think slides are great for providing a taster of a topic, hopefully in a way which encourages people into looking into it more themselves, and forming their own conclusions.

Other peoples' perspectives

I don't want this post to just be my views and opinions, so I canvassed Twitter. Here's what they had to say - if you have anything to add, I've love to hear from you in a comment.


6 Useful Online Tools for Academics (and anyone else who teaches)

 

I teach a session on the PGCAP (Post-Graduate Certificate of Academic Practice) at York - a programme of teaching-related workshops and classes over the course of a year, which every new teaching academic has to attend.

Here's the presentation from this year's workshop, EdTech: Useful online tools for academics:

It covers Blogging and Twitter (specifically their possible use in teaching, which is a lot less straightforward than their use in research, or academic profile building), the excellent Padlet which people always seem glad to be introduced to, Prezi itself, Slideshare, and sources of copyright free or creative commons images.

In previous years I've done a session on Information Literacy in the Digital Age - but I find it increasingly difficult to keep delivering the same things year after year. If I don't rewrite stuff, the feedback scores start to go down as I get less interested; clearly my declining interest is communicated to the audience somehow, despite my best efforts to prevent this. So last year when I had to submit the brief for them to put in the PGCAP brochure, I decided I'd redo the session and make it about useful online tools, and about trying to help the academics more digitally literate (rather than talk about student digital literacy) - that seemed to be the thing people enjoyed most about the previous version of the session, even though it was only a small element.

This academic year I've several times completely redone a workshop or teaching session, and stressed myself out massively in doing so, but ultimately felt much better delivering the new session and got better feedback too. It really is worth it. But it takes a huge amount of time and on this occasion I'd forgotten I'd need to do it - and the session was on the 3rd day back after Christmas... So it was a nightmare, really! But, ultimately, worth the time it took.

This kind of primer session on online tools is, in my experience, welcomed by academics. When asked about the most useful aspects of the session a lot of the feedback mentioned this, e.g.

  • Opened my eyes to new technologies and avenues to share teaching content.
  • Use of blogs images, twitter…all.   I had heard of many of these but the info was helpful to know how to use them effectively.

  • Seeing what is available, evaluated by presenter – gave good insight

  • Very objective analysis of tools and possible use..

  • Examples of how the tools had been used for teaching and learning

So something as simple as flagging up tools some may not have heard of, and giving examples and (objective, rather than evangelical) analysis of how they're used so that even those who have heard of them get something out of it, is often enough to be genuinely useful.

This is less and less of the case, however. I was talking with someone from the eLearning Team (not part of the Library or IT) this week and we agreed that a couple of years ago, just introducing these technologies to a group of academics was enough - but now there's much more understanding of the tools that are out there. So we have to up our game, and move onto more in-depth discussion of how to use these tools, rather than just what they are. Increasingly (albeit not in the presentation above) I find myself wanting to present things by user need, rather than by platform.

Behind the Scenes at the Texas A&M University Libraries 'Happy' Video

 

Some of you may recall that before things got all serious with my post about my daughter, the previous article on this blog was a bit lighter and featured a great library tour video.

Texas A&M University Libraries pastiched Pharrel's Happy (one of the most watched pop videos in 2014) with one of their own. The original features loads of different people dancing to the song; Texas A&M featured loads of people dancing to the song AROUND the library, brilliantly, as way of providing orientation to new students.

This is an update on my previous post, as Texas A&M reached out and provided some great information about the aims behind the film - but first for those who haven't seen it, add to the 66,000+ views it has already had and take a look:

Stephanie Graves, Associate Professor and Cooridinator for Learning and Outreach, provided me with some details. First of all, here are the instructional outcomes they were aiming to achieve:

1)      We are a massive university and the size of the University Libraries can be intimidating.  We want their first introduction to the Libraries to be a positive, engaging experience that reduced library anxiety.  We intentionally choose the theme “Happy” to help accomplish this goal. 

2)      The students are inundated with information from various campus entities during orientation season.  We needed to do something that would be catchy, while relaying just enough information that was memorable.

3)      We have 6 buildings with numerous services.  This can be confusing.  It’s also impossible to give students a “tour” of the libraries on such a large campus.  We wanted the video to highlight our key services and communicate the variety of locations.

Overall, the video turned out to be very successful in reaching these. It's always hard to properly analyse success of this sort of thing, because the video went somewhat viral and that distorts all the statistics. We know it went down well in the library community but that's really on icing on the cake, and the cake is engagement from the library's actual users.

We had a record breaking attendance at our Library Open House (also Happy themed) with over 3,600 students in a 2 hour period. We ran out of Happy T-shirts (3,500) and had to order another batch (also gone). The library Happy shirt is now a “thing” on campus and you see them every day. Our desk staff get asked where folks can buy one on campus, which is a testament to the social phenomenon of our theme event.
— Stephanie Graves

This reinforces the belief that the details of these kinds of ventures, really perfecting a video and making sure it is aimed squarely at the target audience (and not librarians) really pays off. I'm so pleased this worked out so well for them. 

Finally, for those planning their own library video, you can see a Shooting Script from a video we made at York embedded in this blog post, and I'll leave the last word to Stephanie on their planning for their own film:

"We intentionally used student dance groups as our “actors” to help communicate that the libraries were student-centered spaces.  We used a student salsa group, our Aggie Wranglers, and a hip-hop group.  We were hopeful that the variety of dance would communicate the diversity of our campus and make all students feel welcome.  We carefully thought of all the locations and services that we wanted to highlight and in what sequential order to present them.  This pre-work was done  and then we met with the videographer to discuss our needs.   We had it planned out enough that the video only took a day and a half to shoot.    We benefited by having our very skilled student dance groups because we librarians had to do very little choreography.   We simply discussed how we wanted to highlight the space or services and the videographer had them dance as they normally would in the shoot. "

A post about my daughter

 
This is my favourite picture of Grace. My wife took it. I think it looks like the moment in 70s TV Show credits where the action pauses and you see the name of the character. It could be for a show about an adventure toddler, or something.

This is my favourite picture of Grace. My wife took it. I think it looks like the moment in 70s TV Show credits where the action pauses and you see the name of the character. It could be for a show about an adventure toddler, or something.

On New Year's Eve in 2013, we were bathing our 5-month old daughter Grace. Under the harsh bulb in my in-laws' bathroom, my wife Alice noticed that one of Grace's eyes was reflecting the light back, exactly like a cat's-eye in the road - it was unnatural, and unnerving. We Googled it and, like every internet-diagnosis, the answer came back ‘cancer’.

Normally we’d have chalked it up to the perils of using Google to assess the health of your child, but on this occasion there was a whole check list of symptoms for Retinoblastoma – a rare eye cancer which only affects children – and Grace had pretty much every one of them.

·         Eye reflects light like a cat’s eye

G only had the red-eye reflex in one eye, a symptom of Retinoblastoma

G only had the red-eye reflex in one eye, a symptom of Retinoblastoma

·         Child has a squint – in other words the eyes don’t move together all the time

·         Frequent eye infections

·         Has red-eye in only one eye (or neither eye) when photographed with a flash

Here’s the picture we took to test this last one – as you can see, she only has red-eye in her left eye.

You can read more about retinoblastoma and its symptoms on the NHS website. If you have a child of five or under and he or she displays any of these symptoms, make a GP’s appointment right now! This cancer is extremely rare – only around 50 children a year are diagnosed in the UK - so the chances are your Doctor will never have seen it before. You may need to guide your GP, asking them to carry out a red-reflex assessment and refer you to the paediatric ophthalmologist at your hospital.

If you’re reading this and thinking ‘oh god, our child has a couple of those symptoms’ don’t panic – first of all they can be caused by other things, and second of all Retinoblastoma is literally the ‘best’ cancer you can get. The eye socket forms a natural chamber to contain the cancer and stop it spreading; there’s a perfect hole (the pupil) through which to treat the tumour via lasers; it doesn’t usually cause any real distress to the child (unlike something like leukaemia for example) – Grace wouldn’t have known anything was amiss, she felt normal and well; and it has a 98% survival rate, higher than any other type of cancer. It’s really only when it’s not picked up until very late that things get extremely difficult, and the technology is advancing in such a way that successful treatment is deliverable in ways not possible even just 3 or 4 years ago.

There goes 2014

Alice and I found all this out in Birmingham Children’s hospital a few days in to 2014. We’d been extremely lucky in that one of our local GPs had spotted Grace’s squint early so we were on the alert for eye problems. After our internet diagnosis we booked an appointment with another local GP for January 2nd, and he admitted Grace matched the symptoms for Retinoblastoma but felt it was unlikely to be that, so said he’d write to the hospital about it. A couple of hours later he phoned the house and said, you know what, this is silly, we should just get her seen. The ophthalmology clinic was the next day, another piece of luck. The paediatric ophthalmologist wasn’t there so we had an adult one – she said she’d never seen Retinoblastoma before but there was definitely SOMETHING in the eye, which was showing up on an ultrasound. After much waiting while she called people to help decide what to do next, we were referred to Birmingham Children’s Hospital. Only they and Great Ormond Street deal with this cancer – no one answered in London, someone did answer in Birmingham, and amazingly they had a cancellation and could fit us in the following Monday.

So by a very fortunate (albeit dizzying) sequence of events, we went from our Google diagnosis to the specialists in Birmingham in 5 days. Grace was put under a general anaesthetic, examined by a surgeon with a microscope, and they found tumours in both her eyes – quite a big one in the eye that had reflected the light, and smaller ones in the ‘good’ eye.

The plan was that every 3 weeks G would be lasered in Birmingham, and the following day she’d have chemotherapy  in Leeds General Infirmary (in the event it was every 4 weeks; she just couldn’t get well enough in time). This would last for 6 or 7 cycles of chemo, after which she would either stop having chemo or have a different kind. With a lot of cancers you physically cut out the tumour either before or after chemo, but with Retinoblastoma losing the eye is the last resort, and removing just the tumour can make it unstable and cause it to spread, so the lasering would continue after chemo had finished. Basically the idea is just to kill the tumours, rather than ever removing them. Eventually she’d stop needing the laser, and reduce the frequency of visits to be knocked out and examined – she’d go to being seen by Birmingham every 6 weeks (that's where we are now, a year into treatment), then every 8 weeks, then longer gaps. Even though this cancer only really affects children under five years old, Grace will be being checked at least once every 6 months until she’s sixteen! It felt like our whole lives were already mapped out until at least 2030.

The NHS was amazing from the start. Everyone was nice, clear, and matter-of-fact. So many people were ‘assigned’ to us – two surgeons, two oncologists, nurses, eye specialists, a geneticist, a social worker. We realised over time that they were giving us more and more information each time we went for an appointment – there’s too much to handle all at once the first time you find out, so they start with the headlines. What mattered was that Grace was young – we’d caught the cancer at 5 months, before the tumours had become huge or had a chance to exit the eye socket via the optic nerve and cause more serious harm elsewhere in the body. From the beginning, the oncologist and surgeon were talking in terms of saving Grace’s ability to drive! Not her life, or even her sight – you can legally drive if your field of vision is windscreen-sized, and that’s what they were, and still are, hoping to preserve.

All this was extremely reassuring. It was scary of course, but we felt we could deal with it. We’ve always been extremely lucky, and fully aware of and thankful for that good fortune; we almost felt due something like this, and luckily it seemed like it might not be too bad. Our child had cancer, but it was the best cancer to have, and she had it before she was old enough to understand or fear what was happening to her. We could do this. 2014 would be more or less a write-off, but we could get through it.

Chemo

What really scared me was the prospect of subjecting her to chemotherapy. Essentially, systematically poisoning our baby girl over a period of 7 months. As soon as her tiny body had recovered enough, we’d do it again – it turned out this was once every 4 weeks or so, but sometimes she’d be too sick and we’d have to put it off another week. Remember, the cancer didn’t really affect her directly. She couldn’t see much out of the bad eye so she’d just switched it off – she only knew vision as being from one-eye only and that was fine for her. She didn’t feel ill. She didn’t know anything was wrong. But now she would feel incredibly ill for months during treatment. We had to make an appointment for some surgery to put a port under her skin – a way to administer the programme of chemotherapy she’d be given which had go directly into her heart. It’s a scary thing, when your child isn’t yet 6 months, to subject them to that.

Grace's first session of chemotherapy

Grace's first session of chemotherapy

Obviously leaving the cancer unchecked wasn’t an option – it would have started to cause problems fairly soon if it hadn’t been treated. But nevertheless I found it hard, psychologically: it was our giving her chemotherapy that was going to make her feel horribly ill for half a year, and it felt cruel. I was repeatedly grateful that it was happening when she was too young to really know anything about it – too young to dread her next treatment.

The port caused a strange bulge under her skin and we were given a ‘Chemo Duck’ by Leeds General Infirmary, a soft-toy duck with a port and needle plugged into it, to help explain to Emily, our older daughter, why her sister would look slightly different in the bath. This worked really well, and Em was never freaked out by G’s appearance.

Yet another transfusion

Yet another transfusion

The administering of the chemotherapy itself was okay. It took about 4 to 6 hours, and as she progressed over the 7 months she had it for, she became more and more mobile and harder to entertain for that amount of time. You’re plugged into a drip so running around isn’t really an option… She didn’t seem that bothered by the actual process – they give you anti-sickness drugs as part of it, and she didn’t seem uncomfortable with having the chemicals pumped into her. It was the fallout from the chemo that was the problem.

When she started chemotherapy Grace was 5 months old and beginning to develop a personality – but that was essentially put on hold until she was 1. Chemo completely subdued her. Presumably she just felt rotten the whole time. She’d spend a lot of time quietly sucking her thumb, watching, and contemplating.

Towards the end of each cycle she’d begin to feel well again and start to smile and laugh more, hints of what she would have been like all the time without the drugs, and then we’d take her down to Birmingham to be lasered on the Monday, and to Leeds to have chemo on the Tuesday and she’d go back to being quiet.  She hated to be put down during this period, we basically carried her round for months as she preferred being held. Not held sitting down, mind you. She wanted to be on the move, but in our arms.

It affected physical development too. Chemo makes food taste metallic and unpleasant so our attempts to wean Grace were a lot more complicated than our weaning of Emily a couple of years earlier. Grace needed all of her energy to fight what the chemo was doing to her, and didn’t have enough left to grow. She went from being basically average height and weight, to being very light and very short. Emily is a giant, in 6-7 years old clothing even though she’s four. Grace is the opposite, only just getting into 12-18 months clothes even though she’s now over one-and-a-half.

On her 1st birthday

On her 1st birthday

Chemotherapy attacks your whole body. The drugs are so toxic we had to wear gloves when changing G’s nappies. Chemo is the medicinal equivalent of bombing an entire village of innocent people to kill one hostile enemy somewhere within it. The body’s ability to fight infection is taken away, so you become simultaneously much, much more susceptible to getting ill, and much more vulnerable when you do. A cold can cause serious problems. Measles can be fatal.

  Looking especially bruised

  Looking especially bruised

The practical upshot for a baby going through that is that the baby is ill a LOT, and that illness needs to be treated instantly and at length. Every time Grace had a temperature of 38 degrees or more, or any other signs she wasn’t well, she had to go straight into hospital in Leeds (we live in York) for intravenous antibiotics. Of all things about 2014 this was the most stressful – never feeling like you’re more than a day or two, or even an hour or two, from having to drop everything and go in. There was literally no point in making any plans. We cancelled everything. Sometimes she’d be in hospital for days at a time, and if she had a cold she had to be kept in isolation. My wife had to be with her at all times because G was breast-feeding. I can’t imagine the feeling of claustrophobia – a sort of life-wide claustrophobia – and I don’t know how Alice coped, especially as she didn’t have more than about 3 hours sleep consecutively in the whole of 2014.

When you have chemo you have low platelets – these are cells which help stop you bruising and bleeding. They act as a gentle clotting agent to make your blood behave as it is supposed to. You or I have a 'platelet count' of between 150 and 400 (that actually means 150,000 - 400,000 platelets per microliter of blood), anything below 150 is potentially problematic. On occasion, G's platelet count was as low as 6. So Grace bruised very easily, and of course she was learning to walk and constantly falling over and knocking into things. She was forever having blood transfusions, and platelet transfusions (sometimes both on the same day) – because really bad things can happen if the platelet count gets really, really low, below 10: like brain haemorrhages. That was stressful because we had to make that judgement call ourselves, as to when her platelets needed checking. We saw her bruising progress by degrees, so I think we were somewhat immune to it and didn’t realise how bad it looked. When I look back at the photos above now, she looks shockingly ill.

Because Grace was so vulnerable to infection, during and for a while after chemo she couldn’t go pretty much ANYWHERE. She couldn’t go in shops. She couldn’t go in other people’s houses. She couldn’t go into the middle of town. Any enclosed space or space with lots of people in was off-limits. This has pretty profound implications for how you organise your days… Especially with an older child to entertain. We could only ever do social things (or logistical things like shopping) one parent at a time.

Incredibly excited about seeing crowds for the first time!

Incredibly excited about seeing crowds for the first time!

This is a photo of her first visit into York city centre, when the chemo had worked its way out of her system, by September. She LOVED it. She was yelping with excitement just to be among crowds, when this picture was taken.

We’ve never taken anything for granted, but when something as simple as being able to visit the centre of your own town as a family is an exciting treat, it certainly makes you think.

7 long months of chemotherapy, in which all you can do is put your head down and plough onwards, taking the only path open to you. No time for reflection really. You don’t assess much. You just keep going. It’s like being in a snow-storm – you can’t see more than a few feet in front of you, and there’s no point in looking back. You just keep walking until, if all goes well, you come out the other side.

How’s she doing, people ask. She’s doing well, but it doesn’t mean she’ll continue to do so, we’d answer. We hope so, but we don’t know. The Oncologists and surgeons always qualify any good news with ‘but there’s a long way to go and these things don’t conform to strict patterns’.

I don’t know if you’ve ever been in a big room with motion-sensitive lighting – like the stacks of a library, for example. As you move forwards, the shelves immediately in front of you are lit up. And even if you’ve successfully negotiated your way through a whole bunch of shelves, and nothing has tripped you up, you STILL can’t see that far ahead, and success so far has no bearing on whether the floor is clear in the parts you can’t yet see. That’s what it’s like. So far, the way has been clear. But we still don’t know what awaits us in the as-yet dark parts of the stacks.

At the time of writing, things are good. Fantastic, really. Chemo is done and dusted and she didn’t need a second course – she responded well to it, and the tumours shrank, making them easier to laser. She’s no longer vulnerable to infection – if she gets a temperature we can give her Calpol! Instead of driving her to Leeds for 4 days! Amazing… This means our lives are fairly straight-forward compared to 6 months ago. We’re approaching normality. The tumours in the good eye are all dead. The tumour in the bad eye is dying. For the last 3 months we’ve been to Birmingham, she hasn’t needed lasering, and no new tumours have developed. We’re told if it continues to go like this, with no treatment needed, for another 18 months, we might even be able to cautiously say ‘she doesn’t have cancer anymore’. But anything can happen in those 18 months.

It never really goes away, the risk. No one over 5 years old gets Retinoblastoma back, but Grace was born with this cancer due to a genetic defect – she’ll always be at much higher risk than most, to many other types of cancer. (No sun-bathing for you I’m afraid, my beautiful little girl.) She'll have a 50/50 chance of passing it on to each of her own children if she has them, but she could chose to go through IVF so that they'll be able to screen her eggs and choose the ones which don't carry the broken genes.

But she’s still here, and she’s so, so happy now. About 4 months after her final chemo it was fully out of her system and her real personality began to emerge. She’s not so much of a quiet observer now. She’s a riot. Loud, smiley, laughy, talkey (in her own made up language). Defiant. She has to wear a patch over her good eye for an hour a day, to make sure the bad eye doesn’t switch off entirely. She has peripheral vision in it, and that will come in handy later, so we need to keep them both working. She hates patch-time. Sometimes she tries to take the patch off and I shout ‘NO!’ at her, and she stares back at me. Completely expressionless. No longer trying to remove the patch, but wanting me to know she’s unwilling to back down. Do you have any idea what I’ve been through, she seems to be saying? You’re just a cross Dad, that’s nothing to me now… I’ve had CHEMO. This conflict is easy.

She’s already handful, and that makes me proud.

Our older daughter Emily is challenging in all sorts of ways (!) but dealt with this brilliantly, despite our having to frequently drop everything and go into hospital while she stays with Grandparents. She hasn't been jealous of all the attention G (neccessarily) receives, and she's coped with the fact that any semblance of a routine went out of the window for the best part of the year. She's been awesome.

We have been spectacularly well set up to deal with all of this. Our families are incredibly supportive and live close by. Alice took an unpaid career break which we could afford. My work have been amazing and allowed me as much time as I’ve needed – which has been a lot, just for purely logistical reasons with so many hospital visits and having an older child to care for too - and my amazing colleagues have covered for me and kept everything working. Our friends have been so helpful. (If you know someone who is very ill or whose child is ill, offer them practical things – picking up their children from nursery, or cooking for them. It makes such a difference.) Alice’s colleagues bought us a dishwasher and a tumble-dryer! I can honestly say that without the dishwasher, 2014 probably wouldn’t have been possible… The NHS have been fantastic. We’ve been well looked after.

I find conversations difficult at the best of times, but this is a particularly tricky subject. People are sometimes embarassed and unsure how to respond when the answer to their question is 'she has cancer' so you try not to mention it. But then sometimes you can see the conversation heading towards it with a sense of inevitability, because they're going to ask whether we'd like to come over to their house ("we can't, Grace can't go in houses, she's having chemotherapy") or why she's wearing a patch ("she's got cancer in both her eyes but less in the one with the patch on"). So maybe you should mention it early so the way in which you skirted round it before doesn't become immediately and awkwardly obvious in retrospect, when you finally do mention it? The knowledge of the cancer weighs heavily, like an unexploded bomb gradually slipping out of your hand, above to drop into the conversation at some point, changing it completely.

Social media has helped me with all this: the asynchronous nature of the conversation, and not needing to worry so much about the awkwardness, has given me an outlet when things have got a bit too much – and my network on Twitter has been incredibly helpful and supportive, listening, responding, encouraging. So thank you, everyone who has helped.

Here’s to 2015.