This summer I spent ten days in Costa del Southmead, or Southemead Hospital, Bristol, which isn't too bad considering last summer I spent several days in Frenchay Hospital, Bristol and then four weeks in Royal Hospital, Belfast.
After having a period of around six weeks of feeling extremely well after my ETV operation and IMRT radiotherapy, by this I mean I still had all my symptoms but the pain was a three out of ten on the pain score scale, my symptoms and pain started to increase and became unbearable. All I could do was lie on the sofa and watch TV, as my nausea was horrendous and would become worse if I was to walk short distances or travel in the car. I tried to live life as normal as possible as an MRI scan had been planned, four days of ICP monitoring and the removal of my shunt at the end of June beginning of July (the ETV drains the CFS fluid and my shunt was tied off, that's why a removal of my shunt was planned); but in the end my Mum contacted my consultant in Bristol who suggested I come over earlier for my MRI scan, and do some ICP monitoring as it sounded like hydrocephalus. ICP monitoring measures the pressure inside someone's head using a pressure monitor, which is inserted into the brain, this is also known as Intracranial Pressure Monitoring. It's difficult to distinguish between my tumour symptoms and my hydrocephalus symptoms, because they are very similar.
Despite feeling unwell, there was one very important thing I had to do before I would go to Bristol, and that was to visit the beauticians, us girls have our priorities!
Now that I'm seventeen I have been transferred to adult neurosurgery in Bristol, this meant attending the brand new Southmead Hospital. Only a few weeks earlier I was interviewed for BBC South West on the legacy of Frenchay Hospital, which had closed its services and transferred to Southmead and the new Bristol Children's Hospital. Southmead Hospital is enormous, the hospital wards aren't called wards but gates like in an airport, and there are corridors for patients and staff and corridors for visitors. Southmead Hospital is very different to the old nissen huts of Frenchay Hospital, but regardless of what the building looks like, the care was just as good.
One of the first things the medics do when you arrive into A&E is take bloods, which I dread. I dread this not because I'm scared of needles, but because my veins (as you probably know) are awful. I've been told that my big veins are like small veins and hard to get a needle into. After the torture I was admitted onto the neurosurgery ward which I was feeling nervous about, as once your admitted it's a mystery as to when you get discharged, besides who likes staying in hospital, especially during the summer!
I had to have a central line put in my neck, as I needed an MRI with contrast and more bloods taken. The nurses, doctors, phlebotomist and a paediatric/adult anaesthetist couldn't find a vein for my scan to take place. The next day another anaesthetist came round to try and find a vein, his name was Ben, and after taking his time to find one and only poking twice, he felt that I needed to revert to a central line. I immediately knew what was going to happen as I've had a central line inserted before under local anaesthetic. It's very unpleasant, as you can feel it when they are trying to push the central line down into the large vein towards the heart. Ben tried numerous times near my collarbone to get the line in, but unfortunately my veins were not allowing, so the next place was the side of my neck. Thinking back, I didn't really cry, apart from a few tears, probably because I had to stay very still and I tend to concentrate on something in the room to keep my mind distracted from what's happening.
Ben came to see me every morning, to make sure I was OK and that the line was still working. Unfortunately on the first day he came to see me he said he had to put two, or maybe it was four more stitches in, to stop the line from hanging and pulling on my neck (sorry if you're a bit squeamish).
Mum thought it would be a good idea to take a photo of Ben and I just before he began the procedure, at the time I thought Mum was a little crazy, but I'm glad she took the picture as it looks a bit spooky with Ben dressed in his sterile gown, mask and gloves, although it would make a very good Halloween costume if he squirted tomato ketchup down his front.
As my consultant reminded me my brain tumour is still there and will be giving me the majority of my symptoms, so I will never be symptom free. My consultant and I do not want to jump into more treatment just yet, as we need to give the radiotherapy a chance to do all that it needs to do in shrinking my tumour, and the longer I can hang on the better the chances of new treatments being available. So for now it is about symptom management and managing these individually. My ventricles (spaces in the brain where the CFS fluid flows) are big due to too much fluid, my consultant hoped that my ventricles would have reduced in size by now after the ETV surgery. Although they are big the ICP monitoring was normal, which indicates that I have normal brain pressure and that the ETV is working, but because my shunt gives me agonising localised pain and I find it hard to move my neck they took it out. My nausea has been a lot better since I was given a new combination of anti-nausea medication. I was referred to a pain consultant in Southmead, where I discussed my symptoms.
Since my shunt has been taken out I feel like an owl, in that I can now move my neck "the whole way round". I also don't suffer form localised pain from where the shunt used to be, on the right hand side of my head and neck as well as my abdomen.
After staying in hospital a little longer than I had expected, as we couldn't get my nausea under control, I was finally discharged and went back to CLIC House (a CLIC Sargent Home From Home). My sister, Rebecca, flew over to be with my Mum and I. After I was discharged we had been given the opportunity to have a short break away. I wasn't sure if I should go or not due to my symptoms, but I thought it doesn't matter where I am they will still be there, so we took a road trip around the South West of England, unfortunately my Dad couldn't be there with us as he had to go to work.
Before we left for our trip Mum and I visited a friend we met called, Dawn. Dawn is very inspirational, so generous and caring. She is an excellent writer and has a blog called, "Mind The Gap A-Z". She is going through her own challenges being diagnosed with a brain tumour a few years ago and earlier this year was then diagnosed with breast cancer. Dawn is always there to give me some great advice. Mum knew of her allotment and was very excited to see it. It was lovely to see all the individual plots together, full of colour.
Our first stop on our road trip was Devon, we had never been there before and we just loved driving through the little villages and taking in the beautiful scenery. We stayed at a friends house for the night. We met J, F, M and J last summer, when I was having the biopsy of my brain tumour. J who is an amazing little fighter, was undergoing treatment for his tumours, who we loved together with his sister and family. It was really nice to see them again as it had been a very long time. They live in the middle of the countryside and the kitchen and dining room of their house has large glass windows over looking rolling green grass fields. At the bottom of their garden there is a small pond, where newts, bugs and other pond life live. On a clear summers night when you look out of the large glass windows in the kitchen and dining room, you can see the sky full of twinkling stars. It's a truly beautiful place to live, so peaceful and calming, I was grateful for the chance to rest, enjoy the company and best of all little J is in remission and is doing very well.
The next day we headed off on the next part of our trip which was Cornwall, again we have never been to Cornwall before. In Cornwall a friend who we met again while staying at CLIC House over Christmas while I was having IMRT radiotherapy, kindly offered her beach house for us to stay in for a few nights. The beach house is near St Ives and over looks the Celtic Sea and vast Hayes Beach. I slept quite a lot at the beach house, but we managed to squeeze in a couple of trips out. We were so close to the bottom of England that we took a visit to Lands' End. My Mum, sister and I got our picture taken beside the famous landmark sign post, and I even got one saying, "The Danielle McGriskin Fund". We went late in the day and ended the trip with a lovely dinner at a hotel in Lands' End.
Unfortunately while walking the cobbled streets of St Ives I had a funny spell. My Mum was walking in front of me and my sister behind, when all of a sudden my vision went topsy turvy, everything was tilted to the right and I began falling to the right. I was able to call my Mum, and before I completely fell into a heap on the path, my vision went back to normal as well as my balance. It scared us all as this has never ever happened to me before. It was quite embarrassing really, as a few people stared as they walked pass, so I just wanted to carry on walking and get away as quickly as I could, but Mum made me sit down outside a cafe where a seagull then pooped on me, so it called for a nice café mocha to help with the shock of the dizzy spell and bird poop. I think I must have just pushed myself that little bit too much and my body was reminding me to slow down.
After a lovely time in Cornwall our travels continued to Torquay, where a charity called, Torbay Holiday Helpers Network (THHN) is based. THHN is a charity that has been set up by, Luke Tillen. Luke is the owner of a family run hotel in Babbacome called, Hotel De La Mer, where he not only runs his hotel for guests, but provides free holidays for families who have ill children. On arrival you are given a welcome pack with the opportunity of visiting many tourist attractions, days out and restaurants which are free to THHN families during their stay. During our holiday in Torbay, we visited Babbacombe Cliff Railway, Cliff Railway Cafe (who sell the most delicious ice-cream ever) and Hanbury's famous fish and chip shop/restaurant whose fish and chips were very delicious. I especially enjoyed the morning we went to Dartmouth on a steam train, the scenery was beautiful and I saw the "fat controller" (I didn't realise they're only called that in Thomas the Tank Engine oops!!). We sat in first class on the train, and then took a passenger ferry to Dartmouth and a short boat ride up the River Dart. We didn't stop for lunch or cream teas in Dartmouth as I was too exhausted. During our stay we saw two more families that we met at CLIC House and caught up with them. Thank you THHN and their lovely staff for making it a special time to remember.
Our trip to the South West of England flew by, and before we knew it we were on our flight back home to Northern Ireland. I am so glad of the break and it really was lovely to spend some time away.
Danielle X
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