Orkambi. Still waiting.

Orkambi is a drug which should be available right now for the many throusands of people with Cystic Fibrosis for whom it will work. 

“Children & young adults with CF endure lifelong suffering & early death. They need Orkambi and other precision medicines as they are developed. Sufferers in the EU, US & Australia can access the drugs, but not the UK. Hundreds have died in the 3yrs since these drugs were licensed”.

To urge Vertex, the pharmaceutical who developed Orkambi, to negotiate further with NHS England, please click here, it will take just a minute. 

To sign the petition urging NHS England to never give up, please click here. 

CF is unfair enough already without having to fight for drugs which might save your lungs from further decline. 

Miro... with love

I

Can we get off, please?

Seems like we’re on an endless ride that we never queued up for in the first place.

IV antibiotics for two to three weeks at a time, at home if we’re lucky, on the ward if we’re not. Or a mix of the two....

On IVs he feels worse to begin with, but his lung function steadily increases (massive relief)....

Following IV’s he enjoys a few weeks of good health. Maybe six weeks if we’re lucky? Just two or three if we’re not...

But sooner or later the symptoms increase and his lung function falls (massive disappointment)...

We might try oral antibiotics (these used to work more often, why not now?) but more often than not, we’re back on IVs and the ride continues.....

During an exacerbation (CF talk for when his live-in bug, Pseudomonas, has a little flare up and makes him much more symptomatic than he usually is) of course he coughs alot, but how he feels can vary from being able to go to school, CrossFit, football.... to lying on the sofa all day, pale and exhausted,  or in hospital, needing supplemental oxygen. 

Right now, he is exacerbating. He missed football today, but he is well enough to stay home, try two lots of extra antibiotics and wait and see where this one takes us. Yesterday his doctor was saying that even the density of bacteria growth that the lab find in his sputum is not indicative of how poorly an exacerbation might make him - people with CF can have a light growth and be very poorly one week, or a heavy growth the next, but be able to stay home and cling on to a normalish life. I’m endlessly looking for rhyme and reason where there might not be any. 

In the meantime, increased physio, and they are looking at his bloods for aspergillosis levels (a fungus that he has previously grown in his lungs too) and to see how well his kidneys and liver are coping with not only all this treatment, but the amount of painkillers he also takes (he takes some sort of pain relief most days, mainly due to his GI problems). He was given a small lecture about adherence to his Creon (the pancreatic enzymes he needs to take with food, which we think he ‘accidentally’ forgets at school), but he took it well. It’s not awful to miss it, the main consequence being pain and malabsorption, but it doesn’t help his overall well-being. 

For a number of reasons (other family stuff included) this week has been a very hard one. But I have also been reminded of all the support we have around us, and we’re so thankful for our family and friends that wrap us up with love. Thank you x 

Lucio Fontana - Concetto spaziale, attese 1967.

All that glitters is not gold.

I said I would write about this last year. For Isaac and for us, it was one of recovery and adjustment. For me, one of fear, anxiety, sadness, hope, laughter and love. 

But that’s just life, right?

Isaac’s time in intensive care gave us a glimpse of how bad things can be; dependency on oxygen, wheelchairs, a complete and utter reliance on the healthcare system that wrapped itself around us. A profound insight in actual breathlessness, the impossibilities of walking,  getting to a bathroom, to wash, to eat, to do anything normal that a lack of O2 entails.  

Overcoming that exacerbation, getting home, getting back into life after a month in hospital... amidst all of that I never could have told you how stressed out I was. It’s only now, looking back, that I can see that I shook for months without really realising why (do stress hormones linger in your body that long?). Literally shook. And that was just me - what must Isaac be thinking? 

Then adjusting to a new norm. Instead of hospital and IVs once or twice, max three times a year, now to six courses a year - two to three weeks at a time. That is a whole lot of life to live with a needle in your chest, maybe days per year, hooked up to a drip/pump to administer drugs directly into his blood stream, fighting a battle with a bacteria that he won’t really win (he is considered colonised with PseudoA, so the fight now is to keep it in check, rather than eradicate). 

Not to mention two lots of surgery, one very painful and the other for a permenant IV device in his chest. This portacath was an addition that at first he was adamant he did not want. But he came around to slowly as his veins became shot and it became harder and harder each time to get a line in. A permenant reminder of disease. A marker that he never wanted, but that now we are so thankful for (makes intravenous access and a speedy IV kick off so much easier). 

When Isaac is sick, there are clear obstacles to his everyday life. Six nebulisers a day takes up a lot of time. Add IVs to that, and he’s house bound for 2-3 hours more at least, he can’t swim or shower, and to bath he needs to be wrapped in cling-film. His exercise options are limited, sleep is difficult, not to mention that he can feel terrible. But I was thinking today about all the smaller, everyday things that being chronically ill with CF might mean; 

When you cough that much, would you enter a small shop, a lift, a cinema for fear of those LOOKS? The jokes about giving up the twenty a day habit (so not funny)? People running for cover thinking you’re the contagious one? The fear of the dreaded cough-cough-vomit? Would you want to go out for a night in winter, when the cold air/hot air transitions make you cough more? Would you want to cook/eat out, when cough/treatment induced nausea might mean you can’t eat anyway? Would you want to join a gym, when exercise induces just more coughing? And you’re surrounded by peers that don’t have the invisible disadvantage of reduced lung function meaning you can’t ever keep up? Do you carry on accepting invites from friends and family, if you so often have to cancel last minute if you’re unwell? (Or worse, do they stop inviting you?) Would you apply for a job when you knew that it would mean not having the time/energy for all your treatments? Would you wish for that promotion if you knew you might be absent due to hospital stays more and more often in future? What about relationships, when your condition affects your fertility, your ability to travel, your being able to PLAN ANYTHING are all affected? 

The list goes on, and OK, so I may have drifted off the ‘everyday’ theme there, but my point (that I meanderingly get to) is that on the most part, CF is an invisible disease, but it affects sufferers in a thousand different ways, a thousand times a day. I hope by raising awareness here I can increase mindful consideration of life with this and other chronic disease. 

To support our fundraising for the Cystic Fibrosis Trust who fund seriously groundbreaking research, please click here. CF is actually one of the areas of medicine where a cure is a realistic idea, but they lack the funding to achieve this potential. As such, myself and a bunch of my amazing friends will walking the Great Strides walk in the Surrey Hills in June 19. For me, a bonkers 67km in a single day 😬 x 

All that glitters; listen here x 

“

Gorgeousness from Hilma af Klint. 

Smuglessness and a new year

Happy new year lovely people! I may have spoken a teeny bit too soon in my last post, smugly saying how well we all were. I was feeling a lot less smug on Christmas Day eve, when poor Anouk had a thumping headache and a fever of 39.8, and positively smugless over the next week, when we all passed round such a stinking head cold/tickly cough thing that we couldn’t sleep for spluttering and no one knew where one bug ended and another started. 

Thankfully Isaac stayed well, although his junkiness is definitely picking up again day by day (junkiness/fruitiness/rattleiness are all genuine medical terms in our eyes). After IVs so recently, and the fact that there are so many viruses around right now, it’s too soon to call clinic. Instead he was back at CrossFit today trying to physio the junkiness out of his lungs with sweaty panache. 

2018 felt like a year of recovery and adjustment for us, following black October of 2017, and facing more regular courses of treatment than ever before (I’ll write more about this in my next post) - but looking at where we are now, since this time last year? It ain’t all bad - just look at these three x 

It’s Christmas!

We are home. We are well - the best gift I could hope for. We are very merry in the Moly household. 

Thank you for reading, and wishing you all a happy and healthy break if you are having one x 

Have some pictures of Isaac and his lovely cousin Ben. How they change! A constant reminder of the seasons of our lives. We are big fans of cousins in this house, and after years of only a few, the kids now have a new influx of babies to love on, and this Christmas will be all the more special because of them. Merry Christmas babies! 

Happy tweens, grumpy teens! 

Bonds between people who have not, and cannot ever meet.

Isaac is doing really well. One week into IVs and his lung function which was down 20% on his baseline (already not great) had increased 13%, which for one week on is fabulous. So for now, we continue home IVs, and all going well (symptomatically) they will end next week - perfect timing for Christmas. 

Good news for us, but sad news from the wider CF community this week. This is a unique community in that we cannot meet in person without high risk of cross infection (...pretty sure this is unique, as I’ve not heard of it for any other chronic illness? But I could be wrong, t’is not rare!). The bugs which inhabit CF lungs so merrily come in many strains, but from just a few species. They realised back in the eighties that certain strains were prevalent in certain CF centres leading in one case (the Liverpool strain of Pseudomonas) to many deaths. And so came about the end of CF holiday camps, sitting in waiting rooms with other patients, and the start of segregated clinics and beds on the ward so far apart you would never see the other patient. The closest we come to another CF patient in person these days is a knowing smile and a wave across the hospital concourse. As a result, the internet provides those affected by CF our only means in which share knowledge and learn from others who really understand life with CF and what that entails. In those early years, getting over diagnosis, the CF parents forum was my lifeline (shout out to Softie, a kind a generous soul who had CF himself, but spent much of his life advising us parents of newly diagnosed kids from the risks of sandpits, to how to sterilise neb parts, to how to cope with questions from others such as the common ‘that’s the one where you bash them, right?’). 

And as in any community, there are some faces that stand out, the social media ⭐️’s of CF so to speak, and this week we face yet another death of a young activist, advocate, and generally lovely person. In my time as part of this community, I have known far too many die (far too soon) and while CF affects sufferers in very different ways, these losses have broadly fitted into three kinds; 

1) Those who decline in health, usually in their teens or twenties, and are listed for a lung transplant. 

Of these, there are the in the 1 in 3 patients who tragically die waiting for lungs due to a shortage of willing donors (please sign up here ). 

Or those who do get a chance at a new life with new lungs, but die following complications post transplant (as with my friend Jayne. Who I miss so much). 

Or those who initially do well with new lungs, but who later suffer from rejection (as was the case for beautiful Eva, who inspired so many). 

2) Then there are those who decline in health, usually in their teens or twenties, for whom transplant may later become an option, but who tragically die from an infection very suddenly. I am not sure of the details, but in Lea’s last vlog she casually mentions she is starting a new IV drug for her current infection, pretty normal CF stuff, and yet a week or so later, she has passed. 

3) Those who decline in health more gently, and may survive their twenties, thirties, even forties before being listed for transplant (if they even opt for transplant). Or have a transplant earlier, and avoid rejection for many good years. 

Now, it makes perfect sense that when you are at your sickest, you’re much more likely to be home, alone more, and online. Whereas when you are well, you’re more likely to be out and enjoying life too much to be online, and so the internet can skew perceptions. I get this. But one thing is for sure, I know of many, many more in the first two categories than I do the last; and this can be pretty terrifying (‘sudden decline’ especially after our stint on intensive care last year. Too close. Too real). 

While the internet gives us an amazing forum in which to talk about our experiences, and share fears and triumphs with the only people who really understand, it also creates bonds between people who have not, and cannot ever meet. I would not be without my CF community, but with this comes pain and incredible heartache too, despite us never having met.

I shall miss your smile Lea. Sleep well x 

To support our fundraising for the Cystic Fibrosis Trust who fund seriously groundbreaking research, please click here. CF is actually one of the areas of medicine where a cure is a realistic idea, but they lack the funding to achieve this potential. As such, myself and a bunch of my amazing friends will walking the Great Strides walk in the Surrey Hills in June 19. For me, a bonkers 67km in a single day 😬 x 

Lakes, walks, coughs.

Today I walked round the lakes with Obie, headphones on, music loud. Cleared my head some, as I was feeling pretty miserable when I woke. Although I’ve gradually moved his IV times so they are now a reasonable 7am and 7pm, I keep waking up at 5am, irrationally fretting until 7am that I might sleep through my alarm (which I never do).  

Isaac is a smidgen better. Still coughing but he hasn’t been sick since Friday (he coughs and coughs and coughs so hard he is sick when he is this ill). Should be a good sign that he is turning a corner, but not as well yet as I hoped he would be by now on IVs. He has repeat lung function tests Wednesday. We need him better by then, otherwise we could be looking at an admission. 

The deal I have with Isaac about this blog is that he doesn’t care what I write (he agrees awareness is a good thing) but he doesn’t like pictures of him looking sick (fair enough), but if you would like a better idea of what a CF cough can be like, you can check out this couple who vlog daily about life with CF. Gives you a fair idea of what Isaac’s mornings look like right now.

My walk today:

The far reaching affects of Cystic Fibrosis; 



Organised me a new IVs cupboard (this makes me very happy): 

Hoping to write a jolly Christmas blog soon x 

No better.

At least not yet. He is still coughing so much he is sick in the mornings. Hoping this is just the bacteria-busting super powers of ceftazidime and tobramycin doing their shit before a much needed ceasefire in his lungs. Pseudomonas, we know you’ve set up a permenant camp in there, but hell, you need to know your place! 

Perspective

Children with cerebral palsy lick milk powder off a bed to feed. Image credits: Lu Guang

Qi Guihua, held here by her husband, fell ill when she returned to the village from Beijing to celebrate the Spring Festival. She died two hours after this photograph was taken. Image credits: Lu Guang. 

Drugs and beds.

Unsurprisingly Isaac started IV antibiotics today. He is no better, and his lung function had dropped a further 20% in two weeks. 

In true Isaac style, despite coughing and spluttering throughout clinic, and giving them a deliciously juicy sputum sample for the lab, when they asked him how he felt, he just replied ‘Alright I suppose. Yeah, fine’. He usually has cold spray (numbs the skin) to access his port, but for the needle today he chose to have nothing, and hardly flinched. If he could have carried on watching you tube he would have. He amazes me daily. 

But the wards are full. There is no room at the inn.... HA! This shouldn’t please us, but it does. We can stay home and I’ll do his IVs here, and this makes us very very happy. They would rather have us in, for the physios to put him through his paces, but we can and will do just as much here (and avoid picking up more bugs on the ward). Administering his drugs myself is tiring (I’ll be up at 5am, to glove up and mix drugs) but for Ise, it means he can sleep through the doses while I creep around his bedroom in my plastic apron. I cannot fully explain to you how much less exhausting, frustrating and life intrusive this is for us than being on the ward. 

Best case, we do two weeks of IVs at home. His lung function improves, and most importantly, he starts to feel better. Then ho ho ho we can hope for a wonderful and well Christmas. However, if he doesn’t improve pretty quickly, feels any worse, or his labs show he is growing something other than his norm (PseudoA) he is guaranteed an emergency bed as that would mean drugs or treatment that we cannot give him at home. He really really doesn’t want to go in, especially so close to Christmas. Please let this work x 

Still home. Still sick.

Apologies to anyone who read the last post and worried. We are still home. Saturday was awful (I can’t quite explain how utterly heartbreaking it is to watch your child cough (and be sick) again and again and again, day and night. To have nothing to soothe their rib pain, the head pounding, the sore throat...) but Isaac stood his ground in light of his many many previous experiences in A&E, and insisted we wait before going in. Credit to him, he knows his mind and body, and Sunday he was coughing a little less, and so by then it seemed best to wait for Monday to be reviewed by his own doctors. 

But come this morning (Monday) we were told the soonest he could be seen would be tomorrow anyway. The inn is full. The wards are packed, and after talking to his new CF nurse it sounds like our only way to be seen by a respiratory doctor in future is on clinic days (Tuesdays and Thursdays) or through A&E. This is new and miserable news for us; we used to be able to call any time Mon-Fri and one of his team would always be able to fit in a review if he was unwell. So short of fitting his disease around clinic days, we need to sit on symptoms or brave the contagious in A&E from now on. 

I’m sorry, I’m tired, I’m angry; I’m not blaming anyone, but I’m sad (and mad) at the state of our beloved NHS. 

Clinic first thing tomorrow. 

The drugs don’t work/It’s beginning to look a lot like....

..... Hospital. 

We’ve come to the end of two weeks of Cipro, and he is no better. He came home sick from school yesterday, O2 saturations around 94 (anything below 93/94 and he really should be on some oxygen). He coughed and slept his way through the night, and this morning I was ready to pack our bags to go. He coughed so much he filled three cereal bowls with sputum and coughing so hard he threw up. 

Since then his sats have drifted between 90 and 98. As it’s the weekend, our only option is to go through A&E. Although he has this ‘open access’ to hospital, it’s kind of meaningless as he still needs to be reviewed by a doctor to be admitted. 

What haunts me is that we had a similar weekend last October when he became much more symptomatic on a Friday, we thought about A&E on the Saturday, he seemed slightly better Sunday, so we eek’d it out until Monday morning to see his own Dr and go straight from clinic to the ward. Whether things might have been different had we taken him in sooner, I don’t know, but by the Thursday he was in intensive care. 

So why are we sat here at home still? 

Isaac is adamant that he doesn’t want to go to A&E, and he increasingly wants to have a say in his care. I half convinced him earlier, and then his sats said 98 and he told me ‘see. I’m fine!’ between coughs. Last time we were there, we sat for hours, with the contagious (so not good) the drunks, and arguably worse? The people with a stubbed toe or a sore throat (thank fuck for triage). Plus, he argues that everyone at school is sick with the same thing, so it must be viral. True, but his friends don’t also have CF, they don’t have extra sticky mucous they can’t clear, and they won’t have an army of Pseudomonas bacteria already living in their lungs, getting ready for the party a virus lays out for them in his weakened lungs. 

I called clinic Thursday and they said they would get back to me. I knew the Cipro would run out tomorrow morning (Sunday) and it already looked like a bad idea to stop the one thing that might just help a bit until he gets on IV antibiotics, so at the very least, I wanted a prescription for more. But despite calling again and leaving messages three times, I heard nothing back Friday either. This is not like our team, and is most likely a sign the wards are full anyway. 

What we need is 24 hour wraparound care with the team that knows him. What we have is a weekend with limited access to consultants, a hugely overburdened A&E system, full of strangers to him and his health. We’ve been admitted before at weekends only for them to put off treatment until he could see his own team on the Monday anyway, as CF is complex, and registrars are reluctant to make decisions.  

He is asleep right now (4pm, and this is the kid who never naps). I’m sat here listening to his every breath/cough, ready to argue that we have to go in when he wakes up. This hurts. I can’t tell you how much I hate CF. 

Hey you.

Things are good here. Isaac is on some extra oral antibiotics (his lovely Cipro, which makes him so sun-sensitive he has a cute glow even in autumn) while we try and eek out some extra time before his next IVs. His lung function at clinic last week had dropped, but when we scrutinised the figures more, while his predicted % had decreased, his volume had increased, and it was only when we realised he had grown a whole 2cm in two months (!) that we figured out why (predicted lung volume/force is based on a number of factors; gender, age, height, weight). 

He is changing before our eyes, from our cute curly boy to our handsome man. And with these physical changes, come surprising mental ones too; I have found that my usual routine is becoming somewhat void of the levels of nagging previously required (um, wow!).... I make up his nebulisers, get out his tablets, prep his bi-pap and aerobika, he wonders down sleepy eyed, and now... he just kind of... DOES IT. There is still the occasional prompt (Deep breaths! Huffs! Neb!!!) but nothing on the scale of the last few years, and when I do prompt, it doesn’t result in a barrage of angry denials and arguments. In other words, he is getting on with his treatments and my life is feeling inexplicably easier, as feeling like a nag is a necessary but really quite shitty part of the role that we play. 

Honestly, however long this lasts, it’s like the best early Christmas present ever. When we holiday with friends and they saw his previous unlimited levels of procrastination, they would always ask us, why doesn’t he just get it done so he can get on with his day? And we would say, hell only knows! But finally, he seems to be getting this. So, CF friends, know that it can and does get better (at least at times). 

Some pictures from our recent happy adventures with some very lovely family. Love you so much guys x 

Feeling fortunate right now ourselves, but sending my love to so many friends who are having a much shittier time ❤️

Vaccines and herd immunity.

Vaccinations against life-threatening diseases are one of the greatest public health achievements in history. No shit, literally millions of premature deaths have been prevented, and yet while I am actively seeking out any kind of vaccine Isaac is eligible for (with CF, he can have more) I’m still reading crazy anti-vaccine rubbish in the media. 

The wonderful herd immunity that we have gotten used to in the developed world is now breaking down in some areas, because of these inaccurate stories of associated side effects. In reality you are ten times more likely to be struck by lightening than you are to have any kind of adverse affect from a vaccine that a doctor would actually diagnose it as such. 

If you are turning down childhood vaccines for your children based on these crackpot theories, rather than trusting the hundreds of thousands of expert doctors and scientists that endorse them? Then I’m not sure what more I can say to you. Sorry. 

Not quite on the same scale as rejecting the MMR for your baby, but you also meet the odd person who doesn’t just not worry about the flu jab, but who is actually against it, stating they have no need, or that it’s another cost the NHS doesn’t need. Yes, it’s the less well in our community, the diseased, the young, the elderly who are more likely to die from flu. But if you still think flu is a few days in bed watching Hallmark movies with a box of tissues, think again. Flu can be pretty random in who it kills. Getting vaccinated, if you can, will not only protect you, but helps provide herd immunity for those less well around you. And no, you cannot catch the flu from a jab, and yes, vaccine programmes cost, but not nearly as much as anti-virals or admissions for flu do.

Of course, I’m pro choice and all that. I mean, look how well Brexit is turning out for us, right? 

Mental health.

I meant to post during mental health awareness week (just a little late then...). If I had, I would have written about the fact that I too have suffered from mental ill-health, and it’s not something I shy from telling people. I no longer feel that shame that I did once, and that’s partly because I have seen and been inspired by a number of close friends and family who have suffered much worse (breakdowns, crippling panic attacks, stints in hospital sectioned) and come through that AND continue to be the funniest, smartest, and most wonderful people I know (that is fact, no exaggeration at all). 

My mantra when faced with the kids, how can I put it, challenging behaviour (in the case of Rosa this is a big fat fricking AHHHHH!?!! at times) has always been ‘everything is just a phase’, and occasionally, that can be true of adults too. It is for me, and I still now need to remind myself that how I am feeling one day won’t be forever. 

I hope that mental-health awareness week goes a long way to help others understand mental ill-health, and accept and embrace this in the same way they do physical ill-health. My own experience has not been a particularly dramatic one, but I respect my mental health now and try to take better care of my mind and body to keep myself well. 

In my hard partying twenties I once found myself sobbing, literally paralysed at the top of the stairs in a pub, irrationally feeling 100% sure if I delved down into the basement toilets I would be attacked (anxiety induced paranoia). 

I became pretty agoraphobic at college for a while, alongside a weird addiction to watching Dallas repeats on UK gold. 

Even now, I can understand the addictive lure of self harm to release stress (I resist now, but didn’t always). 

Today I rely on a daily dose of Citralopram to keep my anxiety on an even keel (for me, this works, and if it ain’t broke, don’t fix it!); 

I use alcohol to self medicate for stress on a pretty regular basis....(not recommending that one). 

Yet ask any of my friends, and I’m pretty sure they would tell you that I am one of the happiest, most chirpy people they know, most of the time. I think I balance hiding it well, whilst also confiding in my right people, when I need to (find your right people). At my saddest, I want to dig a hole, talk to no-one, listen to sad music very loudly with headphones on, non-stop, maybe walk to the river with my dog and morbidly stare at twigs and leaves for hours. 

But having a big family means I cannot hide for long, and this is both THE most annoying and yet THE most wonderful thing. It no doubt saves me. 

BUT this is me; a healthy Mum of three absolutely gorgeous children, with a job I love and some pretty kick-arse friends and family to boot. When I feel down, I feel guilty too, knowing all I know about how hard life with CF can be; I have to be able to pick myself up to show an example to Isaac, whose challenges, stresses and pains are a hundred-fold to any of mine (albeit I am his Mum, and I love him so much, his pain hurts me too). 

I am no expert, and but the one thing that I can share that always helps me is music. I have eclectic tastes (I make no apologies for a little prog-rock in there!) but in those moments, these are the kind of songs that help me most. I hope you like them. I’m not quite sure how this sharing playlists works, so if you click on the link and get loads of weird hip-hop, that will be Isaac, as we share an account. Anyway, let me know what you think, and also, what helps you. Because one thing is f’sho.... sharing helps peeps! Much love x 

PS: Spotify sometimes adds random tracks they think you might like to the end of playlists, to stop this, go to settings, and turn off auto play, I think that works. Unless you like random suggestions that is. I just don’t want them to add some Cliff Richards and for you to think it come from me 🤨

67

Next trek is booked! I will be walking a full 67km around the beautiful Surrey Hills in June 19, supported (in relay) by some fabulous friends and family to cheer me on. After Brecon Beacons, I said 50km was my limit, but what the hell, what’s another couple of hours with peripheral neuropathy so bad your feet feel like they are no longer housed in skin? 

You can sponsor us here (more on that later) but this post is to say we would LOVE more people to join us; so if you fancy challenge, a chance to get fitter, with THE best company, and all for great cause, PLEASE LET US KNOW. To find out more, and sign up to this or a number of other events in support of the Cystic Fibrosis Trust, see here.

Today in the sunlit woods. Happy weekend all x