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.
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