This week started with something that hasn’t been done in my community nursing setting for many years. I started subcutaneous fluids, something usually used in end of life care, but being used in me to improve ongoing quality of life. The subcutaneous layer of fat is just below the skin. A small needle can be inserted under the skin and some fluid put in to this small layer of fat. I am currently having about half a litre a night through my skin! It’s very strange, but works. My mouth doesn’t feel as sore as usual. We don’t know how long I’m going to be able to stay on them, as this depends on my skin or ‘sites’ (there are only a few subcutaneous areas of fat in the body) will last, but I am enjoying the benefits while I can. The only drawback is that it makes one limb swell for a while until the liquid is absorbed, it doesn’t hurt and this is normal for this treatment. I have waited months and months while protocols etc. have been sorted out, so I am so relieved to finally be trying them.

It was World Book day last Thursday, and I dressed up as a fairy. Specifically Libby the story writing fairy (the nearest thing I could find to a poetry fairy) from the rainbow magic series. I was in the group of children who got the first ten Rainbow Magic Fairy books, which were based on colours e.g. Ruby the red fairy. Now there are over two hundred versions of these books, from the Royal Wedding fairy to the Doctor and Firefighter fairies. World book day was a huge success, we had visitors in school and did loads of fun and relaxed activities. It was my favourite World book day ever, and my last one at my current school.

I took part in my first Lancaster Spotlight workshop on Saturday. I met such a lovely group of really talented young people who were like minded. We performed poetry and learned about editing. We worked in groups and looked at individual poems. I feel really lucky to be a part of this group.

We went to see my Gastroenterology consultant yesterday. He is great and really helps with the numerous bumps in the road that we face as a family. There is no specific umbrella term for the conditions I have, no predicted course or time scale. It is amazing to have a consultant who is ready for anything –  and I threw him some curve balls yesterday. You need a consultant who likes a challenge and genuinely wants to see you be as well as you can be. He has been hugely supportive of my schooling, regimes within community nursing and letter writing regarding things such as respite care. He understands that in order to have a proper life I need help, and that is okay.

I have been reading a book called Flawed by Cecelia Ahern. Wow. I am absolutely loving YA fiction at the moment. It is based in a dystopian world where your moral decisions are judged by The Guild. If you make a failed business investment, mismanage money or do anything morally questionable you could be branded by a hot iron and classed as ‘Flawed’. Flawed people have to live very basic lives. The Guild have been in place to try and rid society  of all flaws and to make society perfect. It’s an amazing book, and there is no way I would limit this to Young Adults. It is one of those books you sit down to read a chapter of and end up reading six. I think the dystopian universe has been really overdone since the Hunger Games, and I’ve chatted to others that agree. However, Ahern has brought a fresh approach to this genre and I can’t actually wait until the next book. Luckily it is out in the next couple of months.