Sixty-Five Roses

by - Tuesday, October 06, 2015

I am sat here, struggling to find the words to write or even title this post. I don’t want to be judged, pitied or people to think I am selfish if I don’t say the right words or address this issue in the correct manner. Truth of the matter is, there is no easy way to write my feelings down and there is no way to address this issue without potentially upsetting someone – probably myself – but I am going to give this a go.

I am 25, and in a few weeks, I am marrying the love of my life. But the love of my life, who is 29 soon, has Cystic Fibrosis. For those who don’t know, Cystic Fibrosis (CF) is caused by a faulty gene which causes the movement of salt and water in your cells, this causes the lungs and digestive system to become clogged with mucus which makes it hard to digest food and to breathe. Cystic Fibrosis has an average life expectancy of 41, although children born in the 21st Century are expected to live around 50 years old. Cystic Fibrosis is incurable and often a double lung transplant is needed when patients lungs become too damaged. Although a transplant is an option for most patients, many patients will die on the waiting list as there just isn’t enough Organ Donors.

Recently, I have been getting really bad anxiety about my wedding and about our future as Mr and Mrs. Don’t get me wrong, I love my fiancé more than anything and we have been through really tough times together, that (without sounding cliché) has made us a lot stronger. There isn’t anything in this world that I would change about him - except, maybe a cure for Cystic Fibrosis? - and there isn’t even a millimeter of doubt that I have about our relationship or future. But when thinking about what our future has in stall for us, it scares me.

Being his wife, best friend, carer, nurse, counsellor or his rock doesn’t scare me as there isn’t anything that I wouldn’t do for him. But it’s the thought of losing him. I can’t even start to think how I would cope without him in my life, and if I am honest when approached about it, I usually avoid the subject completely as it just scared the bejesus out of me! If you have Cystic Fibrosis or know someone with Cystic Fibrosis or another life threatening illness, you will know that these “life” conversations come up. Whether it be with your partner, family, friends or even your nurses, these conversations will come up and you have to face reality that this is pretty serious.


Me and my fiancé, Maz met when I was 20. Albeit at first, I actually despised him as he was possibly the world’s most cocky and irritating person ever, but something about him made me say yes to him taking me on a date for a ‘cheeky nandos’ and we just hit it off. Perfect love story huh? When I met Maz, he spoke about having Cystic Fibrosis and shown me all his medicines and what he needed to do, but I still didn’t fully understand it. It was only after speaking to my dad about it, and doing some research that I only started to understand the seriousness of the condition. Truth is, you will never fully understand Cystic Fibrosis unless you experience it first-hand whether you are a sufferer and even as a carer/family/friend, you will never fully understand the condition unless you go through the worst.

And it was 2013 (three years into our relationship, and the year after buying our first house) that Maz’s health hit its worst. It was possibly the worst year of our lives. Not only did Maz’s health decline but I fully started to understand the condition and how serious it can be. This petrified me. At the start of the year, Maz was starting to lose his appetite, his weight had rapidly dropped, his oxygen levels dropped, he was coughing a lot more than usual and he was struggling to walk or do anything for himself. The worst of all was that he was struggling to do the normal task of breathing, so we took him to hospital to visit his local Cystic Fibrosis team. He was instantly put on an oxygen mask that supported his breathing, he was filled with tubes and needles to instantly start a course of IV Antibiotics (through a drip in your arm) and he was admitted into hospital. This was the start of a long and exhausting emotional roller-coaster.

At this point, there was nothing more important in the world to me than being there for Maz, so I had called in sick due to stress and exhaustion because I really wasn’t sleeping. My manager at the time really was amazing. She was such a support for both me and Maz that I really don’t know how I would have got through 2013 without her. Not only in a work related sense, but also as a friend which is something that only grew and she is now a really close friend of mine. My parents were so supportive and helped me with the littlest things, like cooking me and Maz dinner so we had a proper meal in hospital, to just being there to drive me to the hospital when I was too tired and exhausted and also looking after our pooch. Although some of my close friends were pretty amazing too, it’s true when they say that when hard times will always reveal your true friends as we noticed who really cared about us and who was really there for us. And now, I am glad this happened as I have a handful of friends who I can actually trust rather than friends who don’t really care about you at all.

Maz’s first course in hospital lasted from January until 2nd April (my birthday) and trust me when I say, that the best birthday present ever was Maz being well enough to come home. I could finally rest from having to work full time plus spend all evening, night and weekends at the hospital and Maz could finally sleep in his own bed without being woken up by nurses throughout the night to stick another needle in his arm. But, that wasn’t the end of it though as Maz was admitted again several times throughout 2013 and spent in total around 260 days of 2013 in hospital. Maz who had enjoyed being “normal” by working full time and never had any sick throughout his working life, was now really poorly with a large sickness record.

During 2013, Maz’s nurses were so worried about his health that was rapidly deteriorating that we had “the talk”. No I don’t mean the birds and the bee’s but I mean transplant talk. Something that all/most CFers expect but don’t really prepare themselves for. I was absolutely amazed at Maz’s positivity and confidence, he has always been one of these people that knows that life is too short and was prepared that this is something that he needed to do for a better life style. Like I said, having a transplant doesn’t cure Cystic Fibrosis but it does give someone a second chance at having a better lifestyle than before. So, we pursued this and we was referred to Papworth Hospital - which is a damn good transplant hospital - to complete all the testing. Luckily for Maz, a few months after doing all the tests, we met with the transplant team who reviewed his case and we were thrilled to hear that he was now too “healthy” to be added to the list. (To be the perfect candidate for transplant, you need to be poorly enough that you need the transplant, but healthy enough to make sure that you are in a good physical state and are able make it through recovery because you are on a lot of medication) This was possible some of the best news we had received after having the worst year, as it meant that his health was improving and he was going in the right direction to be able to get back to how he was.

It has now been two years since then, and touch wood (*knock knock*) his health has been pretty stable. Although he will still have routine IV’s, he has been working, we have been enjoying our life with holidays and planning the wedding and better still he has stayed out of hospital. Woohoo! We got engaged in October 2013 and we have spent a lot of the past 24 months getting his health better and planning our wedding. Maz will still have to visit Papworth every 6 months to review how he is doing and review whether he needs to be added to the transplant list - this is mainly to ensure that he doesn’t “drop” back to what he was before, but if he does it means that he won’t need to repeat all the testing and he can just have a discussion to get added to the double lung transplant list – but at the moment, his health is steady and we hopefully won’t need to go back down that route for a few more years.

Of course this is all amazing news, but I’d be lying if I say that I hadn’t panicked and was worried whether it was too hard for me and whether I could cope. I mean, I was 20 years old when I met Maz, I was 23 when all the above happened and I am 25 now, about to get married. I have had to grow up, pretty fast. But there were times when I would feel so alone, I was petrified whether I could cope. I didn’t know how to cope. I’d like to think that I have come pretty far in the sense that I am a lot stronger than I was when all this happened, and at least I’d like to think I know how I am supposed to cope in that sort of situation again. But the truth is, there is no way to prepare for anything like this, and I think that’s maybe why I am scared.


In this past five years, we have had some of the most amazing memories, mainly good! And I know we will have many more to come! Not only was Maz my first “proper” boyfriend, but he is my soul mate and soon to be my husband and I couldn’t be any more excited about that. But I am still getting really bad anxiety. I knew when me and Maz got together that more than likely, I would live longer than him but I have never really thought about it until recently. How do you prepare that there’s a possibility to have to go through all that again with the love of your life? How do you prepare that there’s a chance you could lose your husband? He always has a joke about how he is going to die before me, because for him I guess that’s his way of dealing with it. But for me I just can’t joke about stuff like that, I am one of these people who like to dream that everyone lives forever and when you die, you are simply asleep from this life but continue in another life.

When I read back over this, it just makes me realise how much I love Maz, it’s not that I didn’t know that but I don’t think I realised how much! We (okay I) need to stop worrying about what might happen and just enjoy our life together. Because the truth is, life is too short. And not just for someone who has a life threatening illness but for anyone. Anything could happen to anyone of us at any moment, and no-one has control of that. We just need to stop worrying about what if and just live in the moment. Create memories. Smile. Fall in love. Be kind. Be happy and most of all remain positive.

If I am honest, I don’t know what the “purpose” of this post is. Or what I am expected to gain, but having tried and tried to search for people in my boat on the web to help me deal with this, I was surprised when I couldn’t find anything. So I suppose this little rant is not only getting thoughts out of my head and things off my chest, but I hope it helps at least one reader in feeling not so alone with their thoughts.

If I can ask one thing of you following this post, it is to just join the Organ Donor list. You won’t need your organs when you die, so why not give someone else a second chance at life? It will be the best gift you’ll ever give to someone. Before you say no, think. Would you accept an organ if you was in need? If the answer is yes, you need to be signed up as an Organ Donor.

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