A personal perspective on living with Crohn's disease, cystic fibrosis and cancer by Derrick LoRusso

Before I begin I'd like to thank Mrs. Turley for letting me write on her blog. So if traffic suddenly stops coming to her blog after you read this she knows who to go after. Thankfully, I live in Canada (Or as you Brits call it “Across the pond"), so she's got a long swim to get me. Not including the rabid polar bears and the bone chilling cold. 

I was diagnosed with cystic fibrosis when I was six and Crohn's disease at eight. (Or as I call it "The Ultimate Weight Loss Program.") Ever since then it has, quite literally, been a roller coaster ride on the “Tilt-a-Hurl 2000.” Every day I question if I'm going to breathe easy or I worry about coughing up phlegm. A lot of people have shot me dirty looks because of coughing fits that randomly pop up. My stomach will get into knots of pain at random, causing me to be, literally, out for the count all day. About a year ago, I was also diagnosed with a tumour on my pancreas. Cancer does run in the family, but I thought life would spare me the grief of cancer. The tumour was found by a complete accident during a CT scan - at least I got something out of being in a cramped coffin while horrible disco music blasted in my ears. As the great doctors laid me down on the table, I told them, “Be gentle. This is my first time.” (Humour has been the one thing to keep whatever sanity I have left.) 

Now at the time of writing this, I have what is called a PICC line in my arm for almost three months now (Don't Google it, you won't eat proper for a week). Basically it's a large IV put into a vein in my arm, followed by a tube running through the vein to my heart. Great conversation starter let me tell you! It's in me thanks to three viruses growing in my lungs. One of them was *supposed* to have died off in 2008 but now, recently rediscovered, has returned like a villain from a Batman movie. My poor doctor (who has been in the field for 20+ years) is trying to figure out how to cure it without upsetting an even more deadly, harder to “treat” virus. Apparently, shoving a Dyson vac down my throat and vacuuming up all the phlegm within me might help. Beats having to shove down a dust buster that's for sure.

My parents and I donate whenever we can to charities supporting a cure. I didn't think they would ever find a stem cell for lungs! And they did. Science is breaking boundaries on curing not only cystic fibrosis, but also other chronic diseases of the lungs. There are hundreds of people out there with CF, and they all suffer differently. Some are in the hospital daily, unable to even breathe without constant medical assistance. But it's not just lungs; it's pancreas, bone density, even fertility. We suffer until the day we pass - or until a cure is found. 

Some sufferers are, like me, diagnosed with what the medical community refer as “mild cases of CF.” Able to go outside, go to work, eat and sleep within their own place. We can try to live a normal life. Even if every day does feel like we're drowning, or worse, suffocating without any real way to stop it. I used to keep quiet on my illnesses - a constant fear people won't understand that I am unable to do many things. That fear of “I'll look weak,” or, “I'm not worthy of their time.” Some people are too busy to understand or just don't bother. They see someone like me and think I can work just fine. In reality, I can't walk up the stairs today without feeling like I just ran fifty miles. Recently I've been more vocal about the issue - letting people know about what happens to us both mentally and physically.   

Which is why people like Linda Huber, the Write Romantics and the book Winter Tales are important to the cause of finding a cure. Yes, they are just a small piece of the aid, but big things come in little packages. I won't see a cure for cystic fibrosis in my lifetime, but maybe with help from people like you, we can kick it's ass and get people affected by it to know what it's like to breathe normally, live normally. Until then, I'll continue to take several hundred pills and vitamins, fifty shades of puffers and inhaled medicine, and countless hours of waiting at the hospital, hooked into an IV, and confusing doctors from here to Timbuktu. But I wouldn't give up my illnesses even for a million dollars. It's a part of what made me who I am today. And normal, is not in my vocabulary.

Many thanks to Mrs. Turley, my dear friends and doctors for their constant good will and generosity. And many thanks to my parents who everyday sacrifice their happiness to help and support me through all of my pain. They're part of the reason I'm still here today. Keep smiling everyone!

 Derrick LoRusso

Currently just £0.97 on kindle in the UK and £5.41 in paperback.

For more on this subject please check out below links to two previous posts. And please check out Winter Tales on Amazon - even if it is not for you, please pass on the link to someone who may be interested. There are a lot of romanctic fiction lovers out there - let's find them!

 Linda Huber, author of The Paradise Trees and The Cold, Cold Sea, on why she contributed to Winter Tales.

My post on why I am supporting Linda and The Write Romantics  

I will be returning with my usual brand of silliness and an update on my self-publishing journey in the very near future.

The Quest for Cures

Have you ever seen a child short of breath?

Have you ever been fearful your child might die?

I think every parent has, at sometime or another, had macabre thoughts. If you're lucky enough to have healthy children then those thoughts might only be fleeting but, if your child has a serious illness, you may have lain awake at night, tossing and turning, whilst your imagination takes you into the places that every parent fears. It's tough when your child is ill, no matter whether it's a cold or cancer, because for most of us, our children are the central pivot of our lives. Perhaps the love of parents and carers - is the greatest kind of love - love that is unselfish and bounteous.

My second son has a peanut allergy and asthma. Luckily, he is extremely fit and these days his asthma and peanut allergy make very limited appearances. He has only been treated for asthma in hospital once and, on one further occasion, for anaphylactic shock. On a day-to-day basis I have very little to worry about and, as the years have gone by, I have learnt to put my fears and his afflictions into perspective. In recent years there have also some been some extremely successful peanut allergy trials in the UK which mean that there is the very real possibility that in the near future a cure for peanut allergy will be widespread. For nut allergy sufferers the future is looking brighter almost daily.

For some parents though their fears never leave them. There is still a long, long way to go towards finding treatments and cures for many other illnesses and, of course, towards solving vast global problems such as drought and disease. In fact, there are so many demands on us from charities that sometimes it is overwhelming - especially when you know you only have a finite amount of time or money to help. Just where do you begin? Who do you support? Sometimes we can only follow what our heart tells us.

You know, I think there is a lot of truth in that old phrase "charity begins at home" because if we cannot feel compassion for those closest to us we are unlikely to learn how to extend it to others. Seeing our loved ones afflicted or dying from cancer or heart disease, or any number of other illnesses, is when we truly understand pain. Not just the sufferer's pain but the pain of loving them too. Adversity, loss, suffering make us appreciate what we have - and what others do not. 

Last week, I introduced Legend Press author Linda Huber and The Write Romantics and their anthology Winter Tales, a collection of romantic stories, which is being sold in aid of The Cystic Fibrosis Trust and The Teenage Cancer Trust. I decided to support them as not only do I have direct experience of cancer - my father died from it in 1999 - but earlier this year I met a young Canadian writer called Derrick on Twitter who is only a little bit older than my eldest son and who suffers from Crohn's disease, cystic fibrosis and cancer. Despite Derrick's illnesses he's a lot of fun, has a sharp sense of humour and tries to see the best in life even when he's struggling to breathe. So, when I saw Linda's post about her contribution to Winter Tales, I knew instantly it was a venture I wanted to support. I hope you'll all support it too.

On Wednesday, Derrick will here on my blog telling us about his life and why support from people like Linda and The Write Romantics is crucial in the fight to cure debilitating and life-threatening illnesses like cancer and cystic fibrosis. After that, it will be back to the usual (silly) business! 

Currently £0.97p on kindle and £5.43 in paperback.

Winter Tales is a super little collection of stories ideal for any lady (or gent!) who likes to indulge in romantic fiction. There's a whole variety of love stories from the cosy and warm to the surprising and unexpected. The ebook is an absolute pittance at the moment at only 97p in the UK - which is less than a cup of tea or a weekly magazine. So, if you like romance or have a relative or friend who likes romance, please consider purchasing or sending a gift card and helping Derrick and others like him in their fight for survival.

                  

  Thank you

 Jane

Writing For A Good Cause

Today, I am breaking away from the usual silliness on this blog to introduce you to Legend Press author, Linda Huber. A few months ago, Linda spontaneously bought and reviewed my novel and since then we have become Facebook friends. It was through one of those fleeting Facebook feeds, and quite by chance, that I noticed Linda was contributing to an upcoming charitable anthology. The two beneficial charities rang bells with me and I immediately decided I wanted to support Linda and her writing partners in their very worthwhile cause. Today, I'm leaving it to Linda to introduce the anthology but later in the week, as well as reviewing the anthology, I shall be telling you why supporting Linda's endeavours is personal to me. In the meantime, and with no further ado, here's Linda...

Hi everyone and first of all huge thanks to Jane for letting me loose on her blog this week… (brave woman). The bad news is she’s much funnier than me, but there’s good news too – I’m here to tell you about the PERFECT Christmas present for all those difficult mums and aunties. Yes, I know the dads and uncles are even trickier but as you won’t have to worry at ALL now about the female side of the family, you’ll have lots of extra time to plan for the men…

What is it, I hear you ask? It’s a book called Winter Tales; an anthology, to be exact. Full to bursting with light-hearted, romantic, humorous stories, and the best bit of all is that every penny made by this book goes straight to the Teenage Cancer Trust and The Cystic Fibrosis Trust. The project was organised by a group of romance writers called The Write Romantics. They wrote some of the stories, and for the others they drafted in people like me. (My usual genre’s suspense). I was really, really pleased to be part of this because as a physiotherapist I’ve worked with both cancer and CF patients. Cancer needs no introduction; Cystic Fibrosis is a horrible disease affecting mostly the lungs and the digestive system. It’s genetic, you have it from birth, and although it used to be a death sentence sufferers can now live well into adulthood –  though not a day goes by when they can forget their condition.

Winter Tales  stories to warm your heart, is currently £2.52 on Amazon  Kindle and £6.00 in paperback. In the US it is $3.95 on Kindle and $7.20 in paperback.

So Winter Tales is a nice, funny, romantic book supporting two excellent causes. And we like humour, don’t we, us Brits, even when we’re talking about something as serious as cancer. We’re famous for that. I live in Switzerland, and I get quite a lot of odd looks from people, followed by the careful question ‘Is that British humour?’ And usually it is. Mind you, my story in the anthology, ‘Something Blue’ (as in Something Old, Something New etc), was inspired by a wedding right here in Switzerland when the fire brigade played quite big part in proceedings…

I think too that a bit of humour doesn't go amiss even when you’re writing suspense. My new(ish) book The Cold Cold Sea is about every parent’s worst nightmare. But my cast of characters includes a school class of five-year-olds, and it’s these kids, who all have names – I was terrified we’d edit one of them out by mistake – who provide the light relief. Just by being nice funny little kids. A sense of humour can help us through many an unfunny situation.

"Disturbing and compelling" Hilary Johnson.

So there you have it. Winter Tales is available on Amazon in e-book and paperback, and buying a copy or two or three or forty will help two excellent causes. I’ll be getting a few myself – please join me!

       Linda 

               Please share this post and help support The Teenage Cancer Trust and The Cystic Fibrosis Trust.

Thank you!