Friday, 21 March 2014

Happy St Patrick's Day

I haven't been very well at all over the last few weeks and I'm still not feeling as good as what I was when I came home from Bristol after radiotherapy. I was doing so well since my ETV operation (the operation I had in Bristol for my hydrocephalus, just before I started IMRT radiotherapy). I thought I was feeling more symptomatic because my steroids had been reduced and my brain could still be swollen from the IMRT radiotherapy. After two weeks of not feeling well I suddenly went down hill quite badly. I woke up one night with fever like symptoms, I was shaking, freezing cold and was physically sick too. The side of my neck where my shunt is, that is now tied off, was extremely sore and swollen. I also had sharp pains in my tummy which I've never had before. The next morning my Mum brought me to A&E which is the last place I wanted to go to. It turns out I was running a very high temperature, my bloods were abnormal and my white blood cell count was also high, all signs of an infection. When I was in A&E the medics began a course of antibiotics and I had a CT scan of my brain incase I had hydrocephalus again. After I had one or two doses of antibiotics the course was stopped, as the neurosurgery team wanted to find out what they were treating before they treated it. I was kept in hospital for three nights under observation and I had more blood tests as well as having my CSF (brain fluid) checked. After a few days my bloods went back to normal which was fantastic, and there were no abnormalities in my CSF. I was discharged from hospital and a few days later I had an ultrasound scan of my abdomen as an outpatient, to check if there were any abnormalities around the outside of my shunt. The ultrasound scan came back clear, which is also very good. Unfortunately this means we don't know why I was feeling the way I was feeling, it's a bit of a mystery really. My headaches and pain around my eyes are still very bad, but my neck isn't given me much trouble anymore. Hopefully this isn't the beginning of my hydrocephalus coming back ever so slowly and was just a blip.

Unfortunately, I missed the event in London called, WE Day. I was so disappointed I wasn't able to go because I was in hospital. I was hoping the Doctors would discharge me early or I could take a private jet to London (well I knew that wasn't going to happen). I also planned to see Beyoncé live in concert and luckily I got out of hospital the day before to see her perform in Dublin, which my friend and I got tickets for last Christmas. The concert was absolutely amazing and although I was exhausted and in pain, it was brilliant to be able to go and enjoy the concert. My Mum was a 'Super Mum' as always and drove my friend and I the whole way to Dublin and back again. I've wanted to see Beyoncé since I was ten or eleven, so I was over joyed to have made it. The journey and evening took a lot out of me, but I know if I don't push myself even when I am feeling unwell, then I will never do anything and life will just past by. For me, I believe it is better to plan things ahead and have something to look forward to, because there are so many days which are tough that it's easy to do nothing, even though sometimes I can't make those plans.

A huge congratulations goes to my younger (15 yrs old) sister, Rebecca. Rebecca was awarded an honours in her recent modern dance exams. I am very proud of her for achieving this with everything that has been going on with my health. I use to enjoy dancing and did it for many years, until I had to start doing acrobats (well roly-poly's).

My hair where patches have fallen out from IMRT radiotherapy is growing back! I'm very pleased as I was beginning to think it wouldn't. I have a huge charity ball to look forward to in May and I can't wait to have my hair done for it. I'm not sure what hair style I'm going to have for the ball just yet, I better start looking at hair style magazines for ideas.

I hope you had a lovely St Patrick's Day and some great "craic". My family and I visited family and friends in Fermanagh over the weekend. We went to my Aunty and Uncle's house for a delicious Sunday dinner, I felt like I was rolling my way home.

Since I began writing this blog post, I have been getting worsening symptoms again. The CT scan which I had while I was in A&E in Belfast a few weeks ago has been sent to Bristol, so that they can compare it with their recent scan, taken when I was in Bristol after having the ETV operation. I'm not sure how long it will take for the Doctors to get the scan (as it is sent by post), but hopefully I will hear something next week. I am trying to keep positive, although this can be hard, remembering that not long ago I was feeling amazingly well, the best I've felt since my first symptoms of having a brain tumour and hydrocephalus, over two years ago. Hopefully this is a small blip and I will be feeling a lot better again soon. Having a slow growing low grade brain tumour and hydrocephalus, I am beginning to realise that this is a long term chronic condition, as explained by my Doctor in Bristol. I will have good days and bad (hopefully more good than bad). I'm not going to let this stop me from doing anything that I wouldn't already want to do in life. I may not be able to do the things I want to do now, but I can look forward to it in the future. I've got too many countries to visit, personal goals to achieve and other adventures I want to see and do. As my motto goes, "Stay Strong, Keep Positive... Always".

Danielle X