Monday Special – The Life of a Cystic Fibrosis Patient

Mondays aren’t a regular posting day for us but, when we do post on our blog on a Monday, it’s for a ‘Mega Monday Announcement’ and signals some amazing news for The Write Romantics such as a signing with an agent, a publishing deal, or a book release. Today is not a Mega Monday Announcement. It’s something very different and very moving.

As regular followers will know, we launched our debut anthology of short stories – Winter Tales: Stories to Warm Your Heart – last month. We’re incredibly proud of this anthology because, not only is it the first time in print for most of us, it’s raising money for two amazing charities – Teenage Cancer Trust and Cystic Fibrosis Trust.

We’ve been really touched by the support of our guests and many of their friends and contacts. A couple of weeks back, Jane Turley who runs the humorous blog ‘The Witty Ways of a Wayward Wife’ posted a more serious blog post introducing us to Derrick LoRusso, a Canadian teenager. It moved us all so much that we had to get in touch with him and invite him onto our blog. Thank you, Derrick, for sharing your courageous story with us.

The Life of a Cystic Fibrosis patient

Derrick in Paris
This is a photo taken of me a few years back. I was in Paris, notably at the base of Arc du Triumph while vacationing with my parents.

The first thing I ate there was a Nutella stuffed crepe. My dream of eating one in the middle of Paris came true. I can’t argue with French logic of loving chocolate and Nutella!

On the outside it would appear I can do anything. You wouldn’t guess I was diagnosed with Cystic Fibrosis, Crohn’s disease and even cancer.

This is a photo of my lungs taken only three months ago.

Derrick lungsOn the bottom left is a big white blob. This blob is a virus slowly taking over my airwaves. Which makes it extremely difficult for any CF patient to breathe normally. It is a constant battle of survival. According to my doctor, the only solution is to perform a bronchoscopy and have aggressive treatment of antibiotics to kill a virus that should of died back in 2008.

For me this CT scan image said more to me than any doctor or therapist could say. It was only a year ago I was hospitalized due to a scare of a virus threatening to take my life, and the complete accident of finding a tumour on my pancreas and having half of it removed.

My day starts with a fit of coughing. Only is this quelled when I use one of the three inhalers I take daily. Beginning with Ventolin, which helps opens up the airwaves. After an hour of letting it work, Pulmicort aids mucus to work it’s way up. The third, Symbicort, does the work of both when real emergencies arise. This being when I feel as if I’m being strangled on the inside, and am unable to even grasp for air without coughing or wheezing heavily.

Come meals I have to take enzymes. Cystic Fibrosis has killed any chance of my body absorbing nutrients and helping digest properly. Enzymes absorb every nutrient from the food I eat. Along with lactose aid, multiple vitamins of various types finish off breakfast alone. In total I will take over 300 pills in just a month for breakfast alone. By year end I will have taken more than a 1200 pills total. Not as hard to swallow for me as you think.

Once I have eaten, therapy takes up most of my morning. There are exercises we do to not only aid in breathing even a little better, but force stubborn phlegm out. These exercises have recently taken so much wind out of me, it’s become impossible to even do them properly. When that’s complete, on to the actual therapy of inhaled medicine called Tobramycin. The medicine is in liquid form, and must be evaporated into a mist and inhaled via a compressor attached to a nebulizer. This alone can also be painful, sometimes I don’t even finish the therapy due to extreme uncomfortable irritations in my chest and plenty coughing up of sputum. I do this twice a day, everyday. It is not the medicine at work doing this, it is my body trying hard to exhume the virus constantly, and slowly, drowning me.

I currently have three viruses that will forever grow within me. Pseudonymous can be killed off and can stay at bay for awhile. Microbacterium is permanently within me, however lies dormant unless triggered. The third, called Allergic bronchopulmonary aspergillosis (ABPA,) presumed gone in 2008, has returned. The problem lies within the Microbacterium and ABPA. Were the doctors to treat one, the other will be triggered, and cause unseen consequences and possibly even worse ill health. It seems the only way to combat the virus is to literally vacuum out the upper airwaves and have three days of therapy on intervenes medicine.

Even with all these problems, and more to surely come, I do not let these get the better of me. I finished college and became a freelance journalist, and am planning on a vacation in October to return to beautiful Paris, and even see London. To me nothing says victory over impossible odds than to fly halfway across the world, and see France, a country my ancestors came from. That is the only cure I need; the freedom to enjoy life.

Derrick

Anthology coverThe Write Romantics send their thoughts to Derrick and his family and wish him well with his travels next year. We’re delighted that we’ve chosen Cystic Fibrosis Trust as one of the charities to receive funds from the sale of Winter Tales to help individuals like Derrick and Alys’s three-year-old nephew. Thank you, Derrick, for sharing your experiences with us and helping bring to life this disease that we knew very little about until now.

Winter Tales is available via Amazon now in paperback and e-book formats.

Jessica and Alys on behalf of The Write Romantics

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Launch Day Has Arrived!!!! Crack Open the Champers!

Anthology coverIt’s here! The day we’ve been talking about since early spring has finally arrived and we are beyond excited. For The Write Romantics, today is the day when our dreams come true because it’s the day we can all stand proudly and declare: “I’m a published writer!” Is it a bit sad to admit that I really will be doing that?!

Wow!

For most of us, this has been a dream spanning a decade or several. Some of the group have had success over the last couple of years and others will see their debut novels launched in 2015 but, wherever we are in our journeys, today is an exceedingly proud day for us all.

The Write Romantics and guests are absolutely thrilled to present to you: Winter Tales – Stories to Warm Your Heart. And they really will warm your heart because, not only are the stories all uplifting, but all proceeds go to charity. Cystic Fibrosis Trust and Teenage Cancer Trust are charities close to our heart and we’ve felt quite touched and privileged that eleven other writers have spared their time and talent to share a short story alongside those penned by The WRs. We can’t thank you all enough for your generosity and all the promotional work you’ve done/will do for this book in order to raise as many funds as we can for the two worthy causes. For the full listing on who has joined us, please click here.

IMG_0671The e-Book is available right now on Amazon at a price of just over 10p per story. Where else can you claim such an amazing bargain? The weather’s looking pretty grim this weekend so we suggest you curl up on the sofa with your Kindle, a mug of hot chocolate, and a slice (or three) of cake and read, read, read. But if you can bear to wait a little longer, the paperback will be available from 22nd November although we hope it will appear for pre-order before then (watch this space!)

This afternoon, we partied online. This post was meant to be another reminder of it but, for some obscure reason, it didn’t post so I’m tweaking and re-posting! Thank you to everyone who joined in. If you want to see what we discussed, feel free to check it out but, please note, we’ve all staggered home with our bellies full of cake and cocktails so we won’t be able to participate in any more banter.

10733884_10205442784014952_4540159388851962023_oThank you to everyone who has supported us in this journey and thank you in advance to everyone who is going to download or buy (or both) a copy of Winter Tales. You really can make a difference to the lives of children with Cystic Fibrosis like Write Romantic Alys’s three-year-old nephew, Thomas, and those who are battling against cancer like Stephen Sutton whose story inspired us to pick Teenage Cancer Trust as our second charity.

Enjoy the read, thanks for your support, and let us know what you think of the stories. Because if you love them, we may do a summer one too … but perhaps in 2016 as this has been a long journey so far!

Jessica xx

The Secret of Happiness

The Greek philosopher, Epicetus, once said:

“Do not seek to have events happen as you want them to, but instead want them to happen as they do happen, and your life will go well.”

???????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????It’s a bit like that old saying that the secret to happiness is not having what you want, but wanting what you have. Can we learn to live like that, I wonder? It’s not always easy, but I think I might be getting there at last!

When I started out on this writing journey I enjoyed the writing for itself, for the sheer escapism that creating whole worlds and casts of characters in my imagination gave me. But then I decided to get a bit more serious about it. I was told, and not just by my mum, that my first novel might have what it takes to find a publisher. That was when the fun started to ebb away. I wasn’t writing for the love of it anymore, I was writing to please someone else – an agent, a publisher, a reviewer – and, guess what, almost every single opinion was at odds. I wrote myself in knots and lost sight of what I wanted.

Then I went on holiday to a beautiful place in Western France with family and friends. I was ready to escape from everything, confused by the offers that had come in for my bookA holiday shot1 and beginning to question whether I wanted to be published at all. I was so scared of making the wrong decision, so scared of making a decision at all, that it was paralyzing me.

I didn’t write on that trip, but spent the time drinking, talking, kayaking down peaceful rivers and laughing hard – as though my life was going well. And slowly it all became clear; it really was. It might not have been as I’d mapped out in my head how my life would go, but it was perfect in its own completely unexpected way. I was with my family. Not a traditional one perhaps, but a modern ‘yours, mine and ours’ family. Three gorgeous children brought together by my husband and I, and the one we added together – my wonderful blended family who get on better than almost any other I know. I never expected this, never thought I’d have to marry twice to get it right, but I truly wouldn’t have it any other way.

OLYMPUS DIGITAL CAMERAI didn’t want to get cancer, who would? But I did and it changed my life in all kinds of ways I would never have imagined. It showed me what really mattered and the people to whom I mattered too. It made me re-evaluate my life, giving up a job that was sucking the joy out of everything, and started me off on this writing journey of mine. Which, I guess, brings me back full circle. Could the tranquillity of Western France solve the writing dilemma for me too? I think it did.

Since coming home I’ve stopped worrying about what might be or what might happen if I make a certain choice. I’ve now signed a deal with a publisher who are making some of my dreams come true and instinctively know how to make it fun for their authors. I’ll be back with the details in September when I have a bit more to reveal, but for now I know Epicetus was right… want events to happen as they do and your life will go well.

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The Wednesday Wondering – What do we have to be nervous about?

Welcome to our first Wednesday Wondering of the new format i.e. a monthly rather than a weekly wondering.

Although I would absolutely love to make writing my career, I need to work full time to pay the mortgage and the bills. For most of my working life, I’ve been in Human Resources in training and/or recruitment roles. I’m currently a Learning & Development Advisor for a food manufacturing company. One of my favourite parts of this role is supporting staff members who have some development needs. Recently, I’ve been coaching someone on presentation skills. This individual is actually a very confident presenter but wanted to work on his presentation content and how to keep his audience interested in his message. However, most people I’ve coached on presentations before are really nervous about standing up and speaking in front of others. A Forbes survey in the USA a few years back revealed that, next to dying, public speaking was the biggest fear people had.

My question to The Write Romantics this week is therefore:

What makes you nervous and why? When was the last time you were really nervous and what did you do (if anything) to overcome the nerves?

Here’s what they said:

 

P1050475Helen R says …

I get nervous flying. The flight from Australia to the UK takes 24 hours and I do my best to tackle the nerves by reading, watching movies and shutting my eyes whilst I daydream the time away. This usually works until there is turbulence which reminds me if where I am, or when I think of recent events involving air travel. During my recent long haul flight I read Hazel Gaynor’s “The Girl Who Came Home” and lost myself in that world for hours 🙂

 

Jay says …

What makes me really nervous?  I suppose it’s the things where I am most bothered about the outcome.  Job interviews, if I really want the role, opening up emails from publishers about novel submissions or getting feedback from others about whether I am ‘good’ at something or not.  All of those things make me nervous to varying extents.  Sometimes public speaking does too, but only when it’s about *me*.  As a lecturer and Chair of multidisciplinary meetings I can be über confident, because it’s professional not personal, but when I have to speak about myself… not so much.  I always think of it as being a bit like Worzel Gummidge, for those of you who remember, and putting on a different head!

However, it is probably the single most important thing in life that makes me most nervous – checks on my health.  Having been diagnosed with cancer in November 2010, I have to undergo six monthly check-ups, which shred my nerves.  I watch the radiographer and consultant’s faces when they are carrying out the tests and imagine that they are looking at me with sympathy and that I’m doomed!  I’m getting a bit braver and went for my last check-up without taking someone’s hand to hold (usually hubby or my mum), but I am not sure I would do it again, as the waiting outside the scanning room was torture.

Things I do to make it better?  Forgetting about it for the six months, in between visits, is the best that I can do.  Oh and hubby hiding the appointment letters until the last minute, so that I don’t have to think about it for too long.  It’s a lesson in life though… next time you’re nervous about that job interview or bit of public speaking, ask yourself this – “what’s the worst that could happen?” – and remind yourself that, whatever it is, it could be a whole lot worse.

 

Harriet says …

Enclosed spaces unnerve me, especially lifts. There was a time when I wouldn’t step inside one, not even accompanied. Now I can, but I’m never comfortable. The worst part, beyond the lift getting stuck which would be my greatest nightmare, is that endless moment between the lift stopping and the doors opening. What I have is claustrophobia, of course. It can happen in all kinds of places, not necessarily in small spaces. I don’t like being in windowless rooms, or anywhere I can’t keep the way out within my sight all the time.

P1050477A couple of years ago I had a course of CBT (cognitive behavioural therapy) at an NHS clinic. I got on quite well and by the end I was sailing up and down in lifts and locking myself in the smallest spaces (yes, I mean public loos!) with hardly any qualms, but it took a lot of practice and concentration. CBT isn’t a cure but it teaches you to replace irrational thoughts with useful ones so that whenever you’re in the fearful situation you have the means to cope. As time has gone on, I’ve become quite laid back over trying to defeat my phobia and now I use a combination of methods to get by. I have the ‘tricks’ my therapist taught me but I also use a tactic which is absolutely wrong in terms of CBT – avoidance. If you continue to avoid a situation, you are fuelling the fear. That’s the theory and it’s true, of course, but I’ve also come to terms with the problem in that I don’t mind that I have it. Claustrophobia is one of the commonest phobias; you hear people all the time saying that they don’t like lifts – you meet them mostly half way up eight flights of stairs – and knowing so many people feel the same kind of makes it all right.

 

Alys says …

There’s quite a lot of things which make me nervous but I’ll talk about the writing related ones. Going to London to meet my agent was pretty terrifying. Even though logically I knew that they wouldn’t want to meet me if they weren’t interested in representing me it didn’t stop me feeling pretty sick going into the meeting. Looking back now I’m surprised that I managed to get through it without spilling my tea or tripping over the carpet.

I rather stupidly did something that was even harder than that earlier in the year when I read aloud at an event organised by York Writers as part of York Literature Festival. It was held in the basement bar at our local arts cinema. I’d told myself that it wasn’t a very big place and I’d be fine. But when I got there it suddenly seemed massive. And it was almost full with nearly 100 people there. The stage was about two inches off the floor and the lights were so bright that I couldn’t see the audience at all. I read the first couple of pages of Beltane and my hands shook all the way through. I guess it was good experience but definitely one I never want to do again.

 

Rachael says …

I tend to worry about traveling. If I have a journey to make, I worry about all sorts of things that could go wrong, even though I know they probably never will. I don’t do this when I book or arrange the trip, but a day or two before – but it hasn’t stopped me going yet! The strange thing about this is that I love to travel, explore new places and meet new people.

 

P1050476And as for me …

It’s one word: confrontations. I can’t bear them. At work, I like to think that I build great relationships with my customers and behave in a way that avoids confrontations but sometimes things are out of my control and someone else does something that means I’m going to have to raise a delicate issue. My stomach does a somersault, my hands go shaky, my heart races and I feel physically sick. Awful. There’s nothing I can do to overcome the nervous feeling; it’s always going to be there in this situation. I think the only way I’d feel better would be if I could cuddle my teddy bear tightly, close my eyes and wish it all away! Unfortunately I’ve had a couple of appalling weeks where I’ve had several confrontations or situations where there could easily be one including a face-to-face one at work and an over-the-phone one with a family member. I’m exhausted as a result!

 

Please join in and let us know what makes you nervous or any coping strategies you can recommend. You’ll find the comments tag at the end of the post tags below.

Thank you.

Jessica xx