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Sunday, 22 March 2015

My Month - March 2015

My Month – March 2015

So... March…
March was a different month altogether for me. I launched my blog on the first and have, at times, not been able to keep up with all the messages from people near and far. To date, almost 4000 people have visited my page and read my blog. I thought maybe a few people would cast their eye over it; friends mainly, and those I know who would read it out of curiosity. So to have readers from all over the world is insane!
As someone who has virtually shunned social media for the last three and a half years I feel that I’ve now almost done a 360 and am sharing, tweeting, retweeting and liking non-stop. Of course this all has a purpose for me. Some of the best messages I have had are from those who actually knew nothing about cystic fibrosis (nothing wrong with that - neither did I!) but have said they would take time out of their day to go away and read up on it. I’m almost welling up just thinking about it. And all the people who have made themselves a Bloglovin account (link top left of page) to follow me – thank you! As someone who has read blogs for a long, long time it’s pretty crazy to know people are reading mine!
I have been able to share experiences with others who have been there and got through what we are going through right now and hats off to them. Truly remarkable people, all so willing to answer my naïve and probably ridiculous questions. I have joined a couple of brilliant closed groups on Facebook and I am learning so much every day. One of the sad things about CF is that sufferers can’t ever meet up because of the risk of cross-infection so the online community is massive and extremely helpful.
We attended a routine CF clinic appointment for Harriet which always causes me a little bit of worry. I have heard people refer to cystic fibrosis as an invisible disease as there are no outward signs of it – a sufferer looks fine and dandy appearance wise. However, the problems are all on the inside and only check-ups, cough swabs, x-rays etc can highlight what is actually going on. Thankfully there was nothing to report – sounds dull but these are the ones we are after. She’s gaining weight steadily and the team are all happy with her so that’s good enough for us!

On the way out we spotted the surgeon who would be performing her stoma reversal operation and like two idiots we decided to approach him and ask if he had an update on when Harriet’s operation was going to be. After a very painful and awkward conversation (he clearly had no idea who we were or what we were going on about!) he repeatedly said to just call his secretary. Following his advice I rang the next morning and to my utter surprise I was asked whether I just wanted her booked in now?! Had I known this earlier I would have contacted them much sooner so maybe it does pay just to look like a berk and keep on asking/ringing/borderline stalking healthcare professionals.

So there we have it: the operation is booked for Friday 27th March, which coincidently is my lovely sister’s birthday so that can only be a good sign.
We have been told to expect a week in hospital so I am hoping to be home for Easter weekend. I know that this is the best thing for her. After this there will be no more operations and we are just left with keeping up with her CF treatments. I am still totally and utterly petrified though. I could probably learn some lessons from Harriet who will no doubt take it all in her stride. It is going to be hard for me to be away from Nancy for so long too even though Chris will bring her up each day to visit. Plus once the pain of the operation is over we face the days of recuperation which will be long, dull and drawn out. If anyone has any survival tips for me they would be much appreciated!
In other news, the BBC recently announced the UK’s Eurovision entry and we couldn’t believe it when we learned that the girl singing has cystic fibrosis! I come from a family of Eurovision fans and we have always made a celebration of it in our household so this year is going to be even better for us. The girl is called Bianca Nicholas and is a great singer. Not too sure about the song but they always end up growing on me, I convince myself we will win, then go to bed in a massive huff without fail every year. Maybe this year will be different…
Finally, following on from last week’s post, Chris has managed to stick to his training (ish) for the Great North Run – many thanks to all those people who have sponsored him, and to those who haven’t got round to it yet please do! All the links and what not are below.
If you have any comments, questions, hospital survival tips please get in touch via my social media pages Facebook or Twitter.

To sponsor Chris Emily Marie.


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