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Five Feet Apart, are you in?

YES! I am very in!! Okay so after seeing the new movie , 5 Feet Apart here in Sydney, I am finally ready to share my thoughts on it with you all.

Okay so yes, this is a serious chick-flick!👭 It's all your favourite types of cheese 🧀, and in all honesty, some of the quotes made me cringe! But that's the making of a good hopelessly romantic chick flick right?🤗💑

It's totes emosh💔, even if you haven't a notion what the hell the life of a CFer involves, or if your heart is as cold as Donald J. Trump's!, you will certainly shed a tear or ten!!😭🤧 (If not, Yes I will judge you!!, and advise you to turn to politics).😝

Most importantly, it's accurate. It portrays the life of a person with CF so well, especially hospital life🤒🏥. That repetitive routine that you drag your ass up for every morning despite the little sleep you've had😴 because you've been up coughing all night! That longing to just hang out with someone across the corridor so you can really get to know them and share your worries and loneliness. I've had the wonderful privilege of befriending so many inspiring people with CF on Instagram 💜🌟since I've made my Instagram account (@holdontoyourkite_irl ), and my God I cannot tell you how many times I've thought, "Man I'd love to meet this person for coffee", but I can't.

Yes there are so many serious things that people with life threatening illnesses have to worry about (e.g. health insurance and financial strains which is also addressed in the movie💵 👌🏼), than 'just' meeting up with someone who can relate to their situation, but for me, particularly in my teens, I struggled with this isolation so much that it in turn affected my physical health👎🏼. Not to mention the isolated feeling of missing out on events with family and friend's because your either on the flat of your back in hospital, or you simply just don't have the energy. So I'm so glad that this is highlighted in the movie.

I was also thrilled to hear in the opening scene affects CFers, i.e., addressing the common misconception of It curing CF 👌🏼

It was also pretty special for me on a personal level to see the relationship between Stella (main female character) and her mother. There’s a particular scene that really hit home for me of the two of them just laughing and making light hearted jokes of Stella's situation, just to try and get through it all. VERY relatable!!

So yes, it’s commercial and it’s cheesy, so go in to the cinema with an open mind, remembering that it’s the first motion picture that explains what this f-ing disease does to us sufferers and our families.

This movie has people around the globe talking about Cystic Fibrosis so that for me, gives it a rating of 5 Stars! But don’t take my word for it, get your butts to the flicks! 😉👌🏼

Aoife Rafter, PWCF


Five Feet Apart - A PWCF Perspective

I am not a film critic, so I won’t pretend to be one but I can indeed share with you my opinion of the movie “5 Feet Apart”. Although it was only screened in a limited fashion in Ireland, the movie is a proper high quality production and very watchable to any lay audience who care to see it. The movie does enough to convey the unique challenge cross infection adds to the complexity of disease management in cystic fibrosis. It does take a lot of dramatic licence in scenes where as a person with CF you say to yourself –“that just doesn’t and wouldn’t ever happen, at least not in that way”. So to all PWCF who will watch the movie, there will be scenes that will grate on you for exaggeration and there will be scenes that will annoy you for lack of detail and lack of medical correctness. All in all though it is an excellent effort to bring the world of CF and many of its complications, anxieties and fears to an unaware lay audience. In this regard the movie achieves its purpose in promoting awareness of CF.

The movie also works at the level of any healthcare staff who care for people with CF and also for people with CF themselves – in dealing with events that regularly occur within the CF ward and in dealing with the mind-set of a person with CF. The movie’s most poignant strength is exploring these psychosocial issues common to many people with CF.

I won’t delve into the plot and the strengths and weaknesses of this- as mentioned, I’m not a movie critic. Top line is it’s a relationship based story set in a paediatric CF hospital ward.  The casting and the actors work well to do justice to a person with CF, the treatment regime and the burden of treatment on the human soul. The only criticism I would have and I have heard others mention is that the characters seem a little too well for the level of health they are supposed to be at. Although there are scenes of breathlessness there are also scenes of the characters walking quickly without much stress at all. So a little inconsistent at times. As an Irish person watching this, you do feel one step removed from the quality of healthcare and facilities portrayed and about a life time removed from the emotional intelligence of the lead characters  who seem about 40 years more emotionally intelligent than I recall myself being at age 17. That could be just me though!

It does also portray well the huge effort required to maintain body weight and deals with the very real issues of self-worth, self-image, self-belief and motivation. It glimpses at the wider impact of CF on family relationships – the stresses CF imposes on families and parents and touches on times where a resilient PWCF sometimes parents their parent carer who might struggle to cope with the cruelty of CF on their loved one.

Personally, to sit in a mainstream cinema and watch on screen a character with CF doing chest clearance physiotherapy, tactfully portrayed, was a watershed moment that makes you appreciate the effort of the actors and the quality of guidance and production on-set and you just know that this movie will do much for CF Awareness.

I’m not sure every person with CF who sees this will enjoy it. It may bring back memories of a very difficult time personally for you, it may pose questions you hadn’t ever considered, it may force you to rethink your own level of health. If you do have concerns or questions after watching this movie please discuss with your CF team, your CF nurse, CF psychologist. You can also contact CF Ireland and ask to speak to the CF advocates Rory or Caroline, or speak to Sam in the office who are all there to help you.

I do wonder how different the story would unfold had it been set in an adult CF ward? One for you to ponder too. Many PWCF feel like they are addressed like children by their CF team in adult care, so maybe the movie would pan out just the same!

Rory Tallon


Chef Adrian's Purple Potato Salad

As featured on Virgin Media One's Six O'Clock Show, Cystic Fibrosis Ireland ambassador, Chef Adrian, has specially developed this purple potato salad to raise awareness of 65 Roses Day. Enjoy!    

Chicken Supreme, Braised Chicory with Purple Potato salad 


2 chicken breasts with the skin and wing bone

200mls of white wine

10-20g of butter

2 chicory 

For the potato salad. 

1kg of purple potatoes

2-3 tablespoon of mayonnaise 

Zest and juice of half a lemon

1 handful of fresh chopped mint



Season the chicken first all over with sea salt and on a hot pan on a medium heat place it skin side down. Once a nice golden colour is achieved turn it over. Keep the stalk on the chicory and cut it in half down the centre longways. Place it into the same pan as the chicken and fry on one side also. Place the chicken into the oven on a tray  for 12-15mins at 190oC to finish off. With the chicory add in the white wine, fresh thyme and butter into the pan and allow it to reduce into a nice glossy sauce. Don't be afraid to baste the chicory every now and again.

For the potato salad boil the purple potatoes in salted water with the skin on until softened. Drain off the water and then allow them to cool. Once cooled cut them in half and then add the rest of the ingredients. Season to taste and then serve up with the chicken and braised chicory.