So here I am writing my first official blog!
Sitting down to write this I have a sick feeling in my stomach and all sorts of thoughts racing through my head. Am I capable of putting myself out there? I can normally be quite shy! . I’m not someone who usually expresses my feelings, I like to bottle them up and deal with them myself and try not to allow them to affect me on a daily basis (and it’s worked so far). My health is generally not a topic I discuss as willingly anymore either, when I was younger I would say I was an open book, now that I am a lot older I prefer to keep my health more to myself. To everyone else I appear to have a relatively normal life as Cystic Fibrosis is not something that can be seen, it can be relatively easy sometimes for others not to notice. Yet I continue to type while the feeling of vulnerability hangs in the air!
With the internet so accessible it is easy with any situation that you come across to Google and try to find an answer or response. Symptoms that one has not experienced before may be a reason for us to grab the nearest piece of technology and Google endless possibilities. So it was only natural after my recent diagnosis that I turned to Google and was disappointed to find nothing….. One of those very rare instances that Google did not have some type of answer/information for me! Nothing was available on any subject that dealt with Cystic Fibrosis and Breast Cancer! There were plenty of sites, forums and blogs on each individual illness. So I made a decision to take it upon myself and add that missing something, so that the next person who uses Google to search Cystic Fibrosis and Breast Cancer will find at least one result. It may not be the medical answer one would be looking for but it will be an insight to my experience, my thoughts, feelings and the journey that I take. Perhaps it may help others to change the way they feel about their own health, or offer them something that they needed to deal with a hurdle in their life, maybe this may reach out to others who share in the same diagnoses as myself. This may also be a way for me to let family and friends know what I am dealing with without having to have those conversations that you really just don’t want to have. CF I’m fine and can answer any questions that people may ask, maybe because it has been my life for so long, but for whatever the reason may be, I struggled to get the words “I have been diagnosed with Breast Cancer” out”!. Perhaps because there is so much more awareness within the community for Breast Cancer than CF, there are so many instances of it occurring in those around us and those we love. It’s not the nicest topic for discussion so I apologise now to friends and family as I have told so very few! I am very thankful that I have such an amazing husband as he has had a lot of those conversations for me!
Having CF there is a question that I am constantly asked when one knows or has just been made aware of my illness. “How do you deal with that? How can you be so happy and positive when you have a life threatening illness?”. My response has always been the same. “How do you deal with life? How do you enjoy your day?”. “I live my life everyday just as you do only I have to make a few adjustments to ensure that I maintain good health”. Sometimes I think it is a type of blessing as I am so grateful for my life and don’t take it for granted. I enjoy every day to the full It’s an old cliché but anyone who has had this conversation with me or has ever had a problem and we’ve talked it out knows my motto is “Your only here once! You have to do what makes you happy!”. I have always said that one of the positives about being diagnosed as a baby is that I have grown up with illness so in reality CF is my life and I don’t know any different. I have so much compassion for those who have led what is considered a normal life and are then diagnosed with an illness or some type of condition. Their thought process must be overwhelming initially and I would think that that type of diagnosis would be far worse and would have a lot more implications for an individual to adjust to. One would need to adjust to a whole new life!” Some find my answer very abrupt and others see it as such as positive! I have to say though now that I have experience from both points of view I can confirm that my original thoughts for compassion were correct.
37 Years to date I have lived with Cystic Fibrosis. Every day is a different day some come with battles and others don’t. I have had my fair share of operations, hospital trips, punctured lungs, weight battles, and just days of feeling absolute crap! If you have ever asked me I would have said in all those years the worst thing that I believe has ever happened to me was losing my brother to CF and I have managed to survive through that so there isn’t anything I couldn’t get through. But the doubts have certainly been going through my head since I left that Doctors surgery maybe I haven’t faced my worse as I had originally thought! . Maybe someone else thinks I am a lot stronger than I originally thought and thought it was due time to test the waters and give me yet another challenge to face!
It is very hard to think straight those first 24 hours after that diagnosis. The thoughts rushing through one’s head (and it doesn’t help to Google as it just overloads your thoughts!) and if your anything like me your wanting to see the positive side but there is a little part of you doubting if there are any. There’s treatment available! , Thousands survive breast cancer! . It’s treatable so that’s a bonus to date there isn’t anything that can cure CF! . You’ll be fine you’ve got through so many obstacles and this is just another! My Dr’s appointment and hospital visits are about to triple and take up majority of my week between school drop off and pick up and work! How am I supposed to fit in time I need for shopping (retail therapy has always been a must)? and time for coffee?! and …….OH MY GOD MORE NEEDLES!!! NOOOOOO… I dread needles! (most CF patients do, whilst I am lucky I have a port so most of my treatments are done through there, I still get very anxious and feel sick to my stomach at the thought of a needle). What happens to my family if I am not around?. What about Brady (my son)?. You may be reading this and thinking what has changed you’ve always had a life threatening illness so those things should have already been in your thought processes and you should already have the majority of these answers! But in all honesty with CF I have always had the mindset that It wasn’t going beat me so I had never really thought of those things, I have always said “When I get old” and my latest was “When I have grandkids! Oh I can’t wait for that”. Now I am thinking WOW this is a lot to consider! And it certainly is.
The overload of information is certainly mind boggling and to be honest in the past few years my mind and memory has let me down on quite a few occasions (more than I like to consider) so my ability to retain new information is a little limited. For now I have opted to go with the flow and take on any new obstacles as we work out what both diagnoses mean to my body, it is something certainly out of left field. It would be a little more straight forward if CF wasn’t a factor so for now it’s working out the best steps to take without jeopardising my existing illness.
So sit back, strap yourself in, as I suspect this is going to be one hell of a rollercoaster ride and I would like to take you with me if you are willing. I don’t have all the answers, and please don’t take any of my text as medical advice, and please try and not judge me, I am who I am, and I think that is a pretty positive individual who has got on with life and made the most of every moment. I will share a little bit about CF, as you may not know much about CF and I will also take you to where this next chapter of my life with my “plus one” all began.