Off Topic

[Wildly off topic]: Drums and Drumming

This is very much a one-off post, I think, in that it's nothing to do with communication or libraries, but is instead about drumming, my other passion. I only ever get to play drums in rehearsals or gigs because I can't set a kit up at home, but I think about drums and music about 90% of the time... 

I started drumming when I was about 15 or 16, having previously played trumpet, and found it the most liberating and exciting thing I'd ever done. It all felt very natural and I got quite good quite quickly - sadly because I've not had lessons and don't have much self-discipline, I've not really improved that much since then!

I've played in all sorts of bands, spanning all sorts of musical styles - including a live drum & bass / jungle group, which was amazing - and for the last few years it's been nice to go back to where I started: a good old fashioned rock'n'roll covers band, called Lightbulb Moment. We're actually playing the prime 9pm slot at a small festival this weekend, and amazingly my favourite ever originals band that I've been in, Western Scifi, are reforming for this gig only to celebrate 15 years since we recorded our album. I cannot wait.

Western Scifi & Lightbulb Moment are playing at 8pm and 9pm on the main stage

Western Scifi & Lightbulb Moment are playing at 8pm and 9pm on the main stage

In Lightbulb Moment we play the songs we really like rather than the usual party band stuff, and in Feb we went into the studio to record four videos - live takes of some great covers. They're finally online and I'm so excited about them I'm writing this drumming blogpost, and embedding them below.

I recently created a Drums section to this website. It's hidden in that it's not listed in the main navigation along the top, but if you're interested there's more videos, audio, and a drum related bio, all accessable via the Drums homepage:

Here are the vids. The first is Grace by Jeff Buckley - it's one of my favourite songs of all time (and that was the case before I had a daughter called Grace!) and because it's Jeff Buckley it's a really hard song to do well. But our vocalist, Chris Harte, is pretty amazing on this track and I'm so happy with how it came out. Unlike the other vids below this one has a very Ned-cam heavy visual mix! Thanks to Dave (our keyboard player, co-lead singer, 2nd guitarist and video creator...) for making this for me.

The next tune is something a little more conventional - Don't Matter by Kings of Leon. A short, sharp burst of rock.

I've never been a particular fan of Ocean Colour Scene but Dave brought this tune in for us to do and I really like it. It has twin vocals all the way through, it rocks along, and we made a nice stabby ending for the drums to mess about over the top of... This is called Hundred Mile High City.

And finally the last tune we recorded was Message in a Bottle by the Police. We were all a bit ragged by this point, and we'd only learned the song the previous night, and it's actually a different arrangement to the original version which complicates things further! But in the end it turned out okay. I even sing some of the 'Sending out an S.O.S's at the end...

So there are the new videos. If you've got this far, thank you for sticking with me on this drumming tangent... My entirely-drum-focused Instagram is @ned_potter, the same name as my Twitter.

Any other librarian musicans out there? Leave me a comment with some links to your stuff!

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And finally, if you've made it this far, here's the header pic in full, which is my favourite picture of my drums which, forgive me, I really, really, love...

A photo posted by Ned Potter (@ned_potter) on

New Zealand, professional nourishment, parenthood and opportunities


On Guy Fawkes Night I set off for New Zealand, where I pursued the most exciting opportunity of my professional life. It was AMAZING. But I also won't be doing it, or anything like it, again - for a very long time. Because it's a pretty selfish act, to go away for 8 days and leave your spouse and children to it, just because you get to do a cool thing. This post is partly unpacking that and partly writing about the fantastic experience of going to the LIANZA Conference.

Shed 6, where the conference took place, is on the left of this picture, near the crane. Amazing venue!

Shed 6, where the conference took place, is on the left of this picture, near the crane. Amazing venue!

(Email subscribers! There's a lot of pictures in this one. If they're not displaying view the original post online.)

Taking opportunities

I am by nature both overly cautious, and overly lazy. As it happens falling into librarianship has sorted both those things out for the most part. It's not that I'm 'cured' of them, just that they're both constantly superseded by circumstances. I care about my job and the profession enough to stop me being lazy or cautious most of the time.

But it's always there, in me. Often I secretly hope things I'm committed to will fall through. When I went to the LIASA Conference in Cape Town the travel didn't get sorted for ages, and I started to get genuinely hopeful the whole thing would be called off. But it got sorted, and I had an absolutely incredible experience. It's always the way. 

So when the chance came up to go to LIANZA in Wellington (thanks to my bad fonts...) I was conflicted - I really, really wanted to go, because a) it was such an honour - to do a Keynote at an international conference, and I feel incredibly fortunate to get that sort of opportunity in the first place b) it was in Wellington, which sounded like an amazing place, and c) because I didn't want to give in to the lazy and cautious part of me and not pursue an extraordinary opportunity. In the negative column was a) I'd have to be away from my family for at least a week, which would be hard for me and also for them - solo parenting = zero fun a lot of the time, and b) I'd have to spend time at the weekends preceding the conference writing the keynote, and prepping the workshop I was also going to do while I was over there, and c) the journey door to door is about 35 hours each way, which is not much fun.

The positive column won over the negative column. Fundamentally I didn't want to turn down the greatest professional opportunity I'd ever been given. I asked my wife if I could do this, and she said yes - but really, it's not that meaningful to have done that, because she's not the kind of person who's going to say 'no, you must stay with us'. But she was dreading it. It loomed large in the calendar for us as a family - something to get to the other side of unscathed. I was excited, but it felt like a selfish excitement.

#SHOUT15 itself

I felt quite odd during the conference because I found it incredibly difficult with what was happening at home (more on which below) to be away, but it was perhaps the most professionally nourishing thing I'd ever done. I LOVED it.

The conference was fantastic. It was very much a shared experience for librarianship in New Zealand. I felt this about LIASA for South Africa too - and missed not having that in the UK. We don't have a single conference that unites everyone, that everyone in the profession catches up at. It's a shame, because it's a great feeling to be among a community who share so much understanding.

The powhiri begins...

The powhiri begins...

We started with a powhiri - a Māori ritual ceremony of encounter. It's hard to describe - it involved all of us lining up inside the venue, and then entering as part of a sung call and response between our leader and those inside the building, which established we were friend rather than foe. Here we are all lined up, ready to go.

It was exciting! Everything about the opening to the event was vibrant - I genuinely feel for any New Zealanders coming to UK conferences because we can't promise anything quite as involving over here! 

The first keynote was from Sarah Houghton, who has achieved quite a high level of librarianship-celebrity with her Librarian in Black blog. She was talking about library ethics and privacy, and it was something I needed to hear. I believe in a notion of librarian ethics, but often on twitter it's assumed there's a universal set of values we all subscribe to. It's not really something that's ever come up, in my career, outside of the twitter and blogs discussions. I'm not sure staff are being told what our general values are, only those of the institutions they work in. (I may be wrong, but that's my experience of it.)

So to have Sarah lay out exactly what it means to be a librarian in terms of ethics and values, and to give several examples of not just what not to do but what we CAN do, was very valuable to me in shifting this whole conversation to a firmer footing in my head. Sarah's slides are here.

A picture Justin took to say hello to Jan Holmquist and Andromeda Yelton, our Buyalib partners

A picture Justin took to say hello to Jan Holmquist and Andromeda Yelton, our Buyalib partners

Justin and Ines Almeida

Justin and Ines Almeida

Then Justin Hoenke did his thing. I'll put a link to his keynote here when he uploads it, but you can watch the talk right away if you wish. I was unbelievably excited about meeting Justin, because we'd worked together before, but remotely, and it pleased both of us that we'd finally meet in so far-flung a location for someone from the US and someone from the UK... Amazingly it lived up to the hype, too - we spent a lot of time together and I absolutely loved it. I'm crap at being myself with people I've just met, but with Justin and with Ines from LIANZA I was able to do that right away, which is a rare and exciting thing for me that is so liberating it feels like flying.

Justin's talk was ace, and watching him deliver a talk in a very laid-back style made me, as someone who also tries to present as conversationally as possible, really excited about talking to this group of people. They were receptive and engaged and enthusiastic - perfect. I've never wanted to work in public libraries so much as when watching Justin talk: the difference he's made to his community both in his previous job and his current one is just amazing! It was inspiring.

Kim Tairi's slides were BEAUTIFUL and are online here - she uses her own drawings and I really like the style. Like all good slides they don't tell you the whole story, so you can watch her talk here. It was pretty amazing to hear Kim's talk because she seems like one of us, but she runs a library! She's in charge of a whole academic library! Justin and Kim are both (I think) somewhere around my age, and although I don't envy them being bosses I'm hugely admiring of their ability to do it. 

As I said in my talk, doing a keynote at an international conference felt like a big responsibility. I was as far away from my house as it's possible to get without coming back the other way, and although I didn't ask for a fee it still cost LIANZA a small fortune in plain tickets and hotels to get me there. I felt like my talk was positioned at the ideal time - Sarah and Justin had to open the thing, which is pressure; David Lankes had to close the thing, which is pressure; Kim had to speak first thing the night after the Gala Dinner, which is very tough indeed! My talk was 3 days in, and in the afternoon, and I felt really ready for it and happy with the slot. Usually I practice the first 10 minutes of a talk so I know how I'm going to start, and then allow things to flow from there - for this one I practiced the whole thing in full THREE times! I've watched it back and there's a few things I'd change, but it's basically a presentation that's as close to how I'd wanted it to go as it was possible to get. The people in the room were LOVELY: so supportive and responsive and engaged. It felt great. Thanks to everyone who tweeted such kind things, too.

If you're interested in the library marketing manifesto I presented, the slides and recording are elsewhere on the blog.

A picture of me presenting which I don't hate!

A picture of me presenting which I don't hate!

The audience being warmed up before my talk...

The audience being warmed up before my talk...

In the UK I normally cap workshops at 20 - this one had about 130! I think it sort of worked, although I should have trimmed it down a bit further

In the UK I normally cap workshops at 20 - this one had about 130! I think it sort of worked, although I should have trimmed it down a bit further

David Lankes started his talk by saying 'I'm glad I get to go last as I can correct Ned and Justin's keynotes...' which I liked. There were indeed things in David's (masterfully delivered) address which I disagree with, but I think people appreciated getting multiple perspectives. I certainly enjoyed the through-line of conversation between all the various talks - I quoted several of the other keynotes in mine and found them all to be valuable in shaping my thoughts. David has done a lot of big talks like this one, but it's still a new thing for me - he was very supportive, which I appreciated. We went to the amazing World War I exhibition at Te Papa and afterwards agreed that, in the grand scheme of things, the stuff we disagree about doesn't really matter...

Wellington is a fantastic place. I had no days there where the conference wasn't on, and there was always something in the programme I wanted to be at, so I only had the odd snatched moment to explore. I went up and down Cuba Street which was great, I ended up going to Te Papa, the national museum, twice because it was so amazing. On the first occasion I got there when it opened and headed straight for the top and worked my way down; everyone else did the opposite and it felt like I had the place to myself for about three quarters of an hour, which was magical.

The view from Te Pap's viewing platform. It is unbelievably windy up there!

The view from Te Pap's viewing platform. It is unbelievably windy up there!

Inside the amazing Te Papa

Inside the amazing Te Papa

On the Tuesday after the Gala Dinner we retired to a Korean Karaoke Bar (I never do this sort of thing....) but I was running a workshop the next morning so I left at 1am, long before the rest. I have absolutely no sense of direction, so it was with some excitement that I set out into the Wellington night to find my way back to the hotel. Normally I use Google Maps for EVERYTHING but with no foreign data plan I just wondered around until I found the coast, and then followed it back home. It was great, having the quayside to myself with ocean crashing away in the dark beside me.

Justin sings a song by Journey...

Justin sings a song by Journey...

Fireworks night on the waterfront

Fireworks night on the waterfront

I met so many great people at SHOUT15 - I don't want to list everyone in case I miss someone out but you know who you are! It was brilliant meeting people I've known for years via Twitter, and I made a lot of new friends too. This is what made it such a fantastic event for me.

LIANZA made everything very easy, too. From the moment Ines and I started emailing about going over there they've been kind and helpful. It's a great organisation. One day I'll be back!

Fatherhood and Career Stuff

I've been away from my family for a period of a few nights four times since my 5-year-old was born, all career related: the SLA Conference in America, LIASA in South Africa, doing some training in Australia, and now LIANZA. For the latter 3 of these, I was away for about 8 nights - essentially the shortest possible time without it being impossible to get anything meaningful done whilst there. The journey in each case was at least a day each way, so the time spent in each country was basically 5 days. Parenthood is more important to me than my career, so how can I justify this? In each case, it felt like a one-off opportunity, too good to miss. I wouldn't trade going to any of them - they've each felt hugely significant in my development, and my understanding of culture. But as of now, there won't be any more until at least the kids are a lot older, or they can come too. 

While I was away this time, they had a spectacularly unlucky time. Both of them ended up in hospital (the youngest in the middle of the night, the oldest rushed there from school in an ambulance), and my wife ended up missing work attending to and following up all of that drama. Other smaller things went wrong too and all in all it was just massively stressful - and I wasn't there. Because of what happened with our youngest last year (and her last treatment was only a couple of months ago so it's been a real war of attrition) there's a sort of residual stress-level to do with their health, which means relatively small problems feel like yet another thing to deal with. Everything feels bigger than it is. It was awful to be literally as far away from home as it's possible for someone in England to be - the guilt of voluntarily not being there came second to the horrible feeling of just not being able to help. I had anxiety dreams and trouble sleeping. I coped by not thinking about it as much as possible during the day, which felt like a betrayal in itself.

(I'm aware how #firstworldproblems this all sounds - but I didn't want to present a varnished version of this experience that made it all sound like perfection. It's important that we talk about this stuff and the feelings that surround it. Everyone has different circumstances around work/life balance, and I'm glad this post has sparked conversations around that in general rather than specifically doing talks abroad. The specifics are different for all of us but there are common issues. Lots of people have told me men don't talk about this stuff enough, too!)

So basically, no matter how cool the thing abroad, I can't do it anymore. For a while. Everyone else has to suffer while I swan off to another country and have fun. It's just not justifiable. The fact is I don't need to do it, I don't have to travel abroad for my job. I want to do it - if it were consequence free for my family that would be fine, but it isn't, so it's not.

Shout15 was an awesome, fantastic, magical way to duck out of long-haul foreign travel.

I can't believe you've read this far...

Thanks for getting to this bit, if you did. My overall feeling from LIANZA is that people are pretty great. We all need to look after each other.

Off-topic: A charity gig in York this Friday

Info pros of the North! I would love it if you could come to a gig this Friday, 10th of July, in York.

This is, of course, way off-topic, and normally I wouldn't be using this blog to ask people to come and see me drum. But this is a special gig we've put on to raise money for the Eye Department at Birmginham Children's Hospital - they look after Grace, my 1-year-old, who has a rare form of eye cancer. (In fact, we'll be in Birmingham on the day of the gig itself for her to have laser treatment as her main tumour has become active again, which isn't exactly ideal timing.)

So, if you're near to York and free on Friday, the gig will be in the City Screen Basement Bar which is very nice, especially compared to most venues I gig in, and the doors are at 8pm. I play in a band called Lightbulb Moment and we do rock covers from across five-and-a-bit decades - so there will be some Foo Fighters, some Beatles, some Kings of Leon, a Jack White tune, a bit of Kinks. Songs we like, basically.

It's also our singer Graham's final gig before he moves away, so it'll be emotional! We'll be on stage at around 9:45 I'd imagine - there'll be a support band on before us, too.

Tickets cost £10, and I'd recommend heading to the City Screen’s site to book yours in advance as we've already sold quite a few and the Basement Bar isn't massive. Every single penny of the ticket price will be going to the hospital, so potentially we could raise several hundred pounds, which would be amazing. There'll be a lot of librarians coming already (from my work) so, you know, you'll be in good company...

Here's the poster. Would be great to see you there!

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.


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.