Wobble and butt into gear!

 After a bit of a wobble and a cry when I first arrived in hospital on Monday, today has been a much better day. I'm still not sure of the plan at all, so no updates on that front unfortunately- at the moment I'm waiting for a PICC line placement so that we can start some nutrition directly into my veins (known as parenteral nutrition/PN). I w...
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Bags packed and brave pants on!

 Bit of a crazy day today! Bags packed, brave face on and a pit stop to see the wonderful Daisy en route to say goodbye...we have a bed in Nottingham QMC πŸ₯ There's a long road ahead but it's so necessary to get the help and treatment I need, with the end goal to be strong enough to ride Daisy, visit more schools to encourage children to #FindA...
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443 Hits
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I wish I was an octopus

 These are the times I wish I was an octopus πŸ™ ...can that be my #FindAWayNotAnExcuse idea today?πŸ˜…πŸ€·πŸ»β€β™€οΈToday's events came a lot sooner that I'd thought they would. It's been over three years since I first began having regular infusions and blood tests, each time needing to take blood, cannulate and enter the veins with a needle once if not us...
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Will my surgery be postponed? COVID-19

 Feeling suitably grim and unfortunately with news to match!πŸ™ˆπŸ™Me, mum, the gastro Dr and the colorectal surgeon all met today during wardround to speak. Due to the current climate our NHS has been dropped into with little notice, and the top priority being minimising risks for all patients, the decision has been made to postpone my surgery unt...
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Facing the inevitable

Feeling refreshed after a last minute trip out to Willow Banks with Daisy today- I'm due to be in hospital any day now, just waiting for that magic phone call to say there's a bed and we'll need to drop everything and go. It feels like we've been stood on our tiptoes the past week whilst trying to be ready, so some normality and fun was very welcom...
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260 Hits
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A week of PN- update and good news!

 It's been a bit of a tough few days trying to juggle various aspects of my health. Without dwelling on the negatives that we're still working through with the occasional tearful moment I wanted to share some good news (and hope I don't jinx myself!)πŸ˜‚πŸ™ˆI've been on PN for 7days now and for the first time in 10months I've GAINED weight!!πŸŽ‰ It's b...
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Trust my luck!

When I began PN last week so many people said 'you'll notice a huge boost in energy straight away' and 'you'll feel so much better' but I just wasn't getting it, in fact I felt worse than when I was home. The past week I've been sleeping 14+ hours a day and still struggling to keep my eyes open, walking and staying mobile has felt like such a chall...
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Starting Parenteral Nutrition

 Feeling utterly terrified but also so grateful. A huge milestone passed as I've officially began Parenteral Nutrition since having my PICC line placed earlier this week. (The solution bag has to be kept under the red bag to protect it from daylight due to how sensitive it is.)Tonight I've managed to sneak away from my hospital room to the pat...
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