Tag Archives: UCLH

I wish I could say my brain is a little heavier because I suddenley got smarter but…

It has been a very long couple of weeks! I think the last time I did an update was just after finding out about the growth in my lung again and after that it was straight into radiotherapy!

So I started radiotherapy on Thursday 5th November and I was living the high life up in London! I was staying over in Paul’s House which is like hospital accommodation for families to stay in when they don’t have to stay in hospital. It’s funded by the charity Clic Sargent which are a fantastic and really supporting charity for young people and their families in my situation.

Radiotherapy really was going quite well, it wasn’t what I expected! I would literally go to the hospital for half an hour a day get lined up and have a ‘freaking lazer’ (sorry, cheeky Austin Powers quote there!) fired at my chest for about 2 minutes! It really was that simple! It didn’t really hurt either, I just felt a little sun burnt which makes sense when you think about it! The only bad bit was that I was originally meant to be having only 2 weeks of radio therapy but after a few days they said it was going to be three weeks instead – but staying up in London for another week wasn’t exactly the end of the world!

So I was cracking on with radio up until Friday 13th, which was my last day of radio until the Monday after because I got the weekends off from treatment. We were lucky enough to be able to stay in Paul’s House over the weekends too, so the plan was my boyfriend, Will, was going to come up and we were going to have a fancy weekend in London!

So I was really excited for the weekend ahead, we’d booked up for the London Dungeon on Saturday morning and Derren Brown’s show for the evening. He came up on Friday evening, we went out for pizza (which was bloody massive and bloody good!) and then decided to walk back home – which felt like miles but after the amount of pizza we’d eaten I think we both needed it! We got back to Paul’s House, turned on Children in Need and sat there eating cookies and cupcakes.

That’s when I decided I wanted to be a little attention seeking…

It must have been about 10.30pm, I sat up on the bed and soon realised I couldn’t move my fingers on my left hand. Ok, so don’t panic, I’ve just been sitting awkwardly and I’ve got a dead arm. And after a few minutes I couldn’t move my wrist, within 10 minutes my whole arm had lost movement, so by this stage I was panicking. It hadn’t gone numb or anything, I could feel it all. My arm was just kind of hanging there!

So we called an ambulance – which is quite difficult when you can’t remember the name of the road you’re staying on! But we got there in the end and waited outside Paul’s House. A Doctor’s car was there in minutes and an ambulance followed. I had four paramedics (who were all lovely and really good and calming!) standing around me a little baffled. We were all confused! They took me to the hospital with all the lights and whistles on! First time I’ve had that, so that was honestly quite fun!

We got to UCL hospital which is the hospital I’m treated under and is practically just around the corner – handy I know! Will called my parents who were in London within an hour and a half which is quite impressive coming from Herne Bay, it’s ok though, I’m sure Dad was driving very sensibly though… sorry I struggle to type that with a straight face hehe!

We sat in A and E for a good 5 hours, I went for a head CT scan and there was still no movement. I still felt fine though! I could walk around and everything I just had a very floppy left arm which was actually quite funny to play around with to be honest. We also got to meet all of the night life at a London A and E  on a Friday night which was pretty entertaining!

So we were just waiting around for any kind of news when an oncologist came around, he was quite young, he sat down, he seemed quite nervous and he said we’ve looked at your scan. We’ve found a brain tumour.

Fuck.

Ok so down side, I had a brain tumour that I had no idea about – well recently I’d been getting lights in my eyes but I thought it might have just been really weird chemo effects! The reason I’d lost the movement in my arm was due to a bleed on the brain so I was kept in hospital over the weekend. The upside, I saw the surgeon on Monday (Dr Kitchen – how coincidental is that?!) and he showed me the picture of my scan and my tumour – which was actually pretty cool to see! He said it was quite small, about the size of a walnut and it was going to be quite easy to remove!

So I went back to Paul’s House on Monday evening, unfortunately I couldn’t go home because they still wanted me to carry on with my radio therapy which makes sense! For the next week or so I was a little bit all over the place! I was on some pretty strong pain killers and they made me pretty sleepy!

I finished radio therapy on Wednesday 25th and went straight across to the Neurology hospital that evening to get checked in for my operation on Thursday. The surgeons did say they’d be happy to postpone the operation if I wanted to go home but to be honest I just wanted the little bugger out of my head!

I went down for the operation on Thursday morning at 8.30 am, I’d barely slept and I was a nervous wreck!

The operation took an hour and a half, they removed the tumour perfectly apparently (touch wood) and I was back on the ward by midday.

The next few days were tough but what can you expect I suppose, somehow they let me leave Saturday afternoon!

So that’s me up to date, I’m currently at home typing away with one hand, a nice piece of masking tape on my head and maybe about 10 staples that need to come out on Friday. Each day I’m getting more and more movement back in my arm which can only be good, I even had a cheeky thumb wiggle earlier! I’ve got to say the past week or so has probably brought on some of the hardest things I’ve had to do but I feel pretty content at the moment, to be honest I don’t think I’ve properly processed what has actually happened over the past few weeks but at the end of the day you dust yourself off and you get back up don’t you?

So this is what I’ve learnt over the past few weeks –

  1. I’m really not very brave, and I’m a really ugly crier! I have pretty much cried once a day for the past two weeks. To be fair I am on rather a lot of weird medications which I think may have something to do with it. At one point it was so bad that it became known as 6 o’clock cry time because for three consecutive days when the nurse brought round my dinner I would just sit there and cry… I promise hospital food isn’t that bad!
  2. Even with a brain tumour I can beat my Dad at table tennis.
  3. Arms are fucking heavy.
  4. You can have diarrhoea and constipation at the same time, I’d like to point out I was told this and I haven’t actually discovered this myself but I genuinely found that fascinating.
  5. I think the only reason I’ve got through the past week is from the amazing support from my friends and family. I’ve had so many people come and visit me since I’ve been home and in London and I’ve had so many lovely messages that it’s really kept me going and everyone has been so cool about everything!
  6. My Mum and Dad are awesome.
  7. Food makes me very happy indeed.
  8. I actually quite like Justin Bieber and it’s becoming a real problem!
  9. I know he’ll cringe reading this but Will is fucking amazing.
  10. You can be awake for a seizure, I’ve actually had 5 over the past 3 weeks in my left arm where I think my brain is trying to make a connection again and they are actually really odd and slightly funny!

So for now that’s it, I actually haven’t got any appointments or anything for a few weeks and as far as I’m aware the game is still the same. I’ve got a bit of tumour in my pelvis which is still stable (touch wood), the tumour in my lung should be stable after the radio therapy and I’ve just had a little brain tumour perfectly removed. So perfect that the Surgeon even made a little popping sound to explain how well it came out!

I think that’s all for now, let’s hope I can behave myself over the festive period and have a nice family Christmas at home!