65 Roses?....A beautiful way of saying Cystic Fibrosis, however does not make CF any more beautiful. My wish is to be standing untarnished, unbreakable, breathing easily.... A blog that is about my day to day life, as well as trying to cope with my illness Cystic Fibrosis. There will be no hold backs just me...out in the open, hope you enjoy! xXx

Sunday, 13 October 2013

A blog from Tom

Cystic fibrosis, tobramycin, lung function, lch. All words that 18 months ago I had never heard, just like millions of people don't know what these words are today. These words were about to become words that I would use often. 

I didn't know where my life was heading 18 months ago, I didn't have a plan for the future. I was just the average 22 year old. Working full time, enjoying being young free and single. I would go out of a weekend with friends, spend my spare time playing football and going to the gym. 

Now 24 I would never have imagined I'd be were I am today. After all I had never heard the words "cystic fibrosis". I had no idea that cf (cystic fibrosis) would become such a major part of my life. That I would spend evenings and weekends in the London chest hospital (lch). That I would be caring for and looking after someone when they were ill. That I would find out the people I called my best friends, the people I thought I could rely on, wouldn't be there when I needed their support the most. But I had my family and I had my Kerry. 

I had only seen Kerry twice before she fell ill and needed hospital treatment. It was the night after our 2nd date. Facebook was how I found out that she had been rushed to hospital, just a few hours after I had left her. At this point I didn't know that she was suffering from cf. Although she was still a stranger to me I just wanted to be by her side. I remember thinking to myself "I have only know this girl for a month or so but I can feel she is unwell and I want to go comfort her." 

It was over the next few days that cf was to enter it's way into my life. I spent hours on the internet researching and learning all about cystic fibrosis. I was eager to learn so that I knew just what Kerry was going through as I visited her in hospital. We grew close over the next few months and fell in love. We would lay together and I would know when a coughing fit was on it's way, I would know if Kerry felt unwell. We shared a magical connection and we still do now. 

Me and Kerry are always on the same wavelength. We often think about the same things at the same time. All part of our connection. When she is happy I'm happy and when she is sad I'm sad. 

"We live together, we cry together, tom and Kerry for life." 

In march of this year we found out Kerry was close to being referred to the transplant team. Her health had been decling quite a lot over the last few years although the last 6-8 months had been pretty stable. Something she always says is down to me. I've given her a new lease of life, a new meaning to life and love. I've given her strength when she has needed it the most, I've given her my love and support, I've given her determination to kick cf right up the arse. I've given her all this just by being... Me. Why have I given her this? It's simple, she gave me her heart and I gave her mine. Kerry can always count on me for my love, support, strength and courage. When kerry told me about just how close to transplant she is and how much time she may have left to live if she doesn't get one, it was a testing time for us. It was a time we cried a lot and most importantly it was a time that brought us closer together. I made a promise to her that I will stand by her no matter what. And I will always stick to that promise!!! 

We made plans, there was loads of stuff we wanted to do together. We often talk about our life plans, wanting to buy the house, go on holidays and start a family. I would love to have kids one day and I know Kerry really wants to be a mum. She would make a fantastic mum! We often say we want a boy and a girl. She has so much love and kindness to give to our children and I will be proud to call her the mother of my kids. Although this is something we really want together at the moment it is not possible. It's not impossible for us to have a child now, but it wouldn't we wise to. Kerry's health isn't the best and there is a high chance that having a child would kill her. Her body simply wouldn't be able to cope. Having a child is a precious gift, but to me Kerry is more precious. I am not willing to risk losing her so we can have a child. This is something we both really want but it can wait. We will wait until the time is right, until Kerry's health is better, until there is no high risk of me losing Kerry.  I can't lose her, it would destroy me. I need Kerry just as much ad she needs me!

For now we will continue to be happy with what we have. We will concentrate on getting Kerry to maintain a healthy life for as long as possible, to always keep her smiling and when the time comes we WILL get that transplant and we WILL tackle cf, together! Together we WILL BEAT cystic fibrosis. 

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