Saturday, 27 July 2013

Where Do I Begin?

As you know my family and I arrived safely back from Bristol to N. Ireland on Sunday 23rd June 2013. I was feeling and recovering well from my biopsy operation of Annie (the name I've given my brain tumour). Unfortunately the next day I was extremely sleepy, not like a normal tiredness but exhaustion, where I was sleeping all night and most of the day. I was also suffering from double and blurred vision, in which I asked my Mum to make me a temporary eyepatch hoping that my symptoms would pass after a day or two. I had been holding off going back into hospital for a week, as I didn't want to have to go back in after just coming out of one hospital. My symptoms weren't getting any better but much worse. My Mum decided to phone my neurosurgeon in Bristol to let him know how I was feeling. He suggested that I should have a CT scan of my brain and for the scan to be sent to him, as Bristol have my latest scan so they could compare it and make sure that everything was OK. The following day, which was Sunday morning, my Mum and I went to our local A&E, where I had a CT scan of my brain, neurological examination and blood tests. My Mum and I were both expecting the scan results to be just fine, but to our surprise we were told that I had hydrocephalus (water on the brain) again, or as I call mine, Heidi. When I was having my bloods taken in A&E, the lovely Doctor tried two times but couldn't find a vein, I told her that I have the worlds worst veins. After the two attemps at trying to find blood, I decided to try and look for a vein and told her to try it. The Doctor looked at my Mum as if to say, do I go with what the patient is saying or do I leave it for somebody else to try. The Doctor then tried the vein that I told her try and she got blood! When I have hydrocephalus I become more confident, smiley and giddy, looking back I can't believe I done this as it's so not like me.

In A&E. 

I was admitted straight into hospital on the same ward that I have stayed on previously, so I knew who some of the Nurses were. I was in hospital for 18 nights, where in a nutshell I had four operations regarding my hydrocephalus. Operation 1 - Replace the tube which runs from my valve to my tummy, this didn't help. Operation 2 - Replace the valves in my head and replace the tube again, plus put a probe in my head to monitor my brain pressure, this didn't work.  I was still very sleepy and my eyes still couldn't focus and now move very well. I began leaking CFS fluid (brain fluid) out of my wound on my tummy. Operation 3 - The neurosurgeons realised my stomach was not absorbing the CFS fluid, so I had an operation to attach the tail end of my shunt to a bag outside my tummy, this is called an EVD. I was also started on IV antibiotics just incase the CFS fluid was infected, and good news, it wasn't.  Operation 4 - Put the tube back into the other side of my stomach and kept my fingers crossed that it would work. It hasn't been a smooth journey, for one of my operations it took three anaesthetists three hours to find a vein, which unfortunately they couldn't find. I ended up having to have a procedure to have a central line put in the side of my neck. The procedure for this was uncomfortable as I was awake and local anaesthetic was used. The anaesthetist was very kind and she let my Mum stay for the whole procedure, which didn't take too long. It's a good job my Mums not scared of blood and surgery.

When I was having my third surgery, I still had hydrocephalus so my personality was still very confident and cheeky. I remember asking the anaesthetist for surgery number four if he could wash my hair, as it gets covered in iodine which is used to prep the patients skin before surgery. I told him how when I was having my biopsy operation in Bristol, the neurosurgeons Reg washed my hair for me while I was still asleep in theatre. I also told him that it was my anniversary of being diagnosed with Annie (my brain tumour) and Heidi (my hydrocephalus). He must have felt sorry for me as to mine, my Mums, the Nurses and patients on the ward surprise, my hair was lovely and clean at my cheeky request.

After 18 days spent in hospital, I was given the all clear to go home. I was very excited and couldn't wait to start to enjoy the summer holidays. After just two days of enjoying the sun, I couldn't move my eyes properly, I knew what was coming next, instead of waiting for a week in the hope it would disappear, my Mum phoned the hospital ward and once again I was told to come straight in to hospital. The only good thing was I was going back into a bay where I knew some of the ladies who I had meet at my last stay, so it was really nice to catch up and find out how they were doing. Whilst in hospital we supported each other, they called me smiley as I was always smiling, and every time I came back from surgery they couldn't believe how quick I came around from being under anaesthetic. Many of the hospital staff such as the porters, theatre staff, radiographers, Nurses and catering staff know my name. This is because I've been in hospital quite a few times over the past two years since being diagnosed. I hope they think I'm an excellent patient!

There are a number of new Nurses on the adults neurosurgical ward, together with the Nurses who have been there longer, they are all brilliant and very caring. I received a very cute owl card with a lovely message from one Nurses who looked after me, I showed her a picture of my owl cushion that I brought with me to Bristol hospital.  

The owl card my lovely Nurse gave me.
I had a scan to check that the fluid wasn't gathering in my stomach, and an MRI scan to check that my ventricles weren't enlarged, they were all fine, so the neurosurgeon's Reg adjusted the valves which does not require surgery and I've to be followed up every week as an outpatient to check if the setting pressure is OK and to if it needs adjusted. I got discharged from hospital again on the 26th July 2013 and came home to the lovely weather and a tasty BBQ!

This is my third summer in a row that I've spent in hospital, the first time I was just diagnosed with Annie and Heidi, the second time was to do with my shunt and hydrocephalus and this time was the third. They say everything usually happens in threes, so I hope that this will be the last time I will spend some of my summer holidays in hospital, fingers crossed!

Thank you very much to CLIC Sargent in Northern Ireland for sharing my Blog on their Facebook page. Hopefully the people who saw this on Facebook are reading and keeping up with my Blog. 

I've finished my course of steroids, they finished sometime during my first stay in hospital this summer in Belfast. I don't have cravings anymore for Fanta lemon, the paninies from the hospital cafe and Pringles sour cream and chive crisps (although they didn't taste right but I still craved them). 
Thank you Home Restaurant, Belfast
who made a lovely meal for me while I was in hospital.

-Colouring book, ''The Usborne book of Drawing, Doodling and Colouring'', the Nurses on the ward thought that this book was amazing and some said they would buy it for themselves. 
-Crossword Book 
-I-Pad (to keep in touch with friends and family, play games, carry on with my fundraising and awareness raising of brain tumours and more). 
-Wristbands (I continued selling my wristbands when I was in hospital, sorting out orders from my online shop as well as selling them to the patients and many of the hospital staff, such as the porters, Nurses and Doctors in hospital. Thank you for your patience in receiving them, also a big thank you for supporting my Fund with The Brain Tumour Charity).