My week: first half wonderful, second half awful

As some of you will already know, this week has been very eventful for me in some very positive but also negative ways. I finally had the second attempt to remove my buried bumper, which has been a constant source of pain for me since last July and has meant I have had to pass on NG tube for drainage daily. It was successful! I am totally relived, because the next step would have been to cut into me from the outside, which is a big operation. However, in removing this bumper my feeding tube had become dislodged. This means that as I am writing this I am feeling pretty terrible and am draining / throwing up a lot of what is being pumped in. I am down to have another endoscopy, this time under sedation and not GA, to try and get it back in the right place. It has been a very emotional few days and I am so lucky to have such supportive parents who have been there for me the whole way.

After my General Anaesthetic my POTS was really bad, almost comically bad. With POTS syndrome when you go from sitting to standing or do another trigger you heart beat increases from its normal rate by 30-40 beats per minute and your blood pressure goes really low. In recovery all I did was move my head and it went up by 40 beats per minute. It took three times as long to get me recovered from the op as it did to have the actual op! I am at home, pretty sore but doing okay. Mum is doing a wonderful job of intensively looking after me (as usual) and I am just looking forward to getting back to a little normality.

On Friday I performed at Lancaster spotlight as a part of their ‘listening to youth’ project. I had such a fun time, the audience were wonderful and incredibly kind. I got lots of very encouraging feedback as well, which is always great to get. I performed first as I get tired, and then sat back for the rest of the evening watching the other amazing acts perform. I’m not just saying they were amazing either, they were incredible. One of my new friends performed a very thought provoking piece on how we have trivialised words such as ‘depressed’ and ‘ocd’ to mean sad or liking something tidy, despite being serious illnesses. She has certainly made me think. There were also other acts than poetry, there was a comedian and musician as well. At the end of the evening a local band called Karena performed. In the car on the way home we were flabbergasted that they were performing here and not in Manchester. I loved their set and want them to bring an album out ASAP!




I would like to thank Ron, Sarah and Chris for running the workshops that led up to this performance. I wish they could continue! I have made a couple of firm friendships with very creative and talented people.. My confidence while performing has also gone up hugely. I now enjoy performing my stuff and don’t feel very nervous at all, which is something I never thought I would say!

On Saturday I went to see the amazing port Jackie Kay perform live at The Hothouse in Morecambe. She was incredible. Having read her autobiography Red Dust Road I was so excited to see her, and she did not disappoint. She was hilarious and read some really good stuff. I was talking to a lady afterwards who wondered if Jackie had just read the best extracts from her book – but I explained that they had simply been extracts. That’s how consistently high the quality of her writing is. After the performance I met her. She is one of my favourite poets that I have met, in that she was so personable and genuinely interested in my life and interests. She was very patient when we took photos as well, as my phone decided to make the photos blurry and only got a good one on our ninth attempt!



2 thoughts on “My week: first half wonderful, second half awful

  1. Hello Hannah,
    What can I say? I am so very, very sorry that you have had such a tough week. It’s not fair . I want to wave a magic wand. I am sure all of your friends feel the same. I heard Jackie Kay speak at one of the festivals. She is great. What a lot of interesting people you are meeting!
    I will try & read the books you recommend.At the moment Inam just finishing one written by a Jewish friend about his life.
    I spoke to Yasmin last night , she starts the long journey home today.
    I still have my grandson living with me. At Beckside there are so many daffodils & primroses. I spend far too much time just looking out of the window but I guess old ladies are allowed to do that!!!
    Lots of love Hannah, you are amazing.


    1. Hello Jenny,
      To be honest if I lived in your gorgeous spot I would spend many hours looking out of the window as well! The view you have is delightful.
      It has been a bit rough to be honest, but my mum is here as always doing a wonderful job of looking after me.
      Jackie Kay was one of the nicest people I have ever met. She gave everyone so much time just to chat to her. So down to earth despite all of her success.
      I cannot WAIT to see Yasmin!! I hope she has a smooth journey
      See you soon,
      Hannah xx


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