Had a wonderful few days in Glasgow at the British Society for Haematology conference. It was great to listen to these inspirational clinicians who have dedicated their lives to help people like me. It was also really good to represent MDS UK and advocate for the amazing work that this small but mighty charity accomplishes.
I didn’t get home till 11pm last night. I had a quick sandwich and then hit the sack as I had to be up at St Thomas’ the next morning.
I set my alarm for 6am in order to take just the essential medication with a small mouthful of water. It made me feel really sick. I went back to sleep for another couple of hours and woke feeling exhausted and nauseous as well as having a pain in my tummy.
The drive to St Thomas was slow. The London traffic was heavy and the rain was relentless. I was slightly delayed getting to the hospital but I wasn’t fussed about it. What can you do any way?
I’ve been here for 90mins now. They have changed me into a gown and tried to cannulate me twice. The first one tissued and the second one disappeared. I get so fed up with having to fit into hospital protocols that don’t work. I won’t have sedation any way so why starve me and deprive me of much needed fluids and try and stab me when I won’t have the medicine any way.
I haven’t seen a doctor yet and I really want a conversation in order to ensure they don’t keep putting me through this. Fingers crossed they come up with a better plan that enables me to access my treatment without any hassle.
Most of the time I’m try not to be grumpy. What’s the point. It just makes the situation worse. Every now and again I get fed up with it all. When you live with constant nausea the last thing you want or need is anything that makes you more nauseous. Taking medication on an empty stomach is not a good thing and makes me feel really rough. Then sitting around a cold waiting room for hours when you’re in pain and can’t take anything doesn’t help you either.
Let’s hope the day proves fruitful and I get a cuppa and some biscuits soon. I’m sure that will return the smile to my dial!
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