Tag Archives: Brain Tumour

A f*ck it attitude, a feast and a fantatsic fundraiser

I’m so sorry that it’s been such a long time since I’ve posted anything! It’s been a very busy few weeks/ months! So where to start…

Ok maybe I should just get the worst over and done with… so the last I think I told you about treatment was that I had finished radiotherapy for my head and I was going to have a head MRI just to see that everything had gone to plan. I’m pleased to report that (touch wood) that all came back ok and it seems the radiotherapy is working it’s little magic ion/radon (I really have no idea what particle it is) backside off! So that’s a bit of a relief! However… and I know you were probably waiting for that bit because I am me after all… I also had a routine chest X-ray.

I’d kind of been struggling at college since the beginning of April, I was just feeling quite tired, coughing a lot and I was really quite breathless! Just getting to and from the train station was tiring me out (I did suggest to my parents that I should get a Segway but you can imagine how that went down!). Sorry, getting off topic. So after an X-ray up in London I always have my oncologist appointment with Dr Strauss and she is fantastic. She’s always been straight with my family and myself about treatment, cancer, side effects, etc. and that’s what we’ve always wanted. She’s been my oncologist from the very start and I couldn’t have hoped for a better Doctor!

So the X-ray, I wasn’t sure what to expect. I knew I’d had a few problems but to be honest I thought it was probably just a chest infection! However, that wasn’t the case. We sat down in Dr Strauss’ room and she immediately asked me how my chest was feeling. I explained to her what was going on and she didn’t look surprised at all. She then listened to my chest and I sat back down in the chair. She said there’s not really an easy way to tell you all of this but the bottom of your left lung has collapsed (the lower left lung is where the tumour is, in which I had to have the chemo for and radio for). She then went on to say that there was sign of tumour growth on the left side and also on the right side. And that the lower left side was blocked from a tumour. Well that explained a lot… and all this time I thought I had a cough not a collapsed lung!

Ok, think you’ll agree, not great news. Dad and I were both a little stunned. Dr Strauss said radiotherapy was out of the question however there was one chemo left that we can use but to be honest ‘it’s no miracle worker’ and she said she would be more worried to give it to me in the thought that it might make me weaker and give me more chance of infection then actually do anything for the tumours.

So I think we pretty much decided then and there between the three of us that chemo wasn’t worth it. Dr Strauss gave me all of the necessary paperwork to look over in case I changed my mind and she said come back next week, we’ll do some CT scans and discuss any other possibilities.

So that’s what we did, over the week, as a family we discussed the option of chemo and we put a lot of thought into it! Although at the end of the day, it was my decision. But you know what, I didn’t feel qualified! I know it’s my lungs and my life but I really was pretty 50% / 50% for a while! How do you make a decision like this at 19?!

So we went back the next week and the CT scans confirmed everything that Dr Strauss had said. We decided on no chemo and I was supplied with a double bag of medication – yes double bagged because there was that much! They even asked me for ID and to sign some statement!! But it’s ok, I didn’t have to pay 10p for my bags (sorry, thought I’d try to lighten the mood with that one!). So yeaaaahhh… I have loads of medications and I still have appointments up in London with Dr Strauss every 3 weeks or so, just to check in but other than that I’m not on any treatment for my lungs.

I know it’s not a nice subject but I’ve always been honest with you guys! I haven’t been given a time or anything – Dr Strauss literally said ‘how long is a piece of string’, which completely makes sense, No-one knows what can happen! We are in contact with the local Hospice and we’ve had a few conversations as a family up there which I’m sure you can kind of imagine the stuff we’ve spoken about.

And, you know what, I’m ok with discussing it all, I’m not going to curl into a ball and pretend it’s not happening, what’s the point in that? To be honest the thought of having to go through chemo for a third time was a little terrifying. And yes, I am happy with this decision, I know there’s going to be good days and bad days but I have so many good friends and family surrounding me that I feel pretty ready to take this on. I’ve been to college a few times and I’ve started just doing things I want to do, which quite honestly is eating loads of food, have fun days out with friends and family and just enjoying my life! How many people get the opportunity to just do whatever they want?! Whether I’m ill or not I’m gonna grab onto that firmly with both hands!

Anyway… I always was a strong believer of getting the worst bit over and done with first! Kind of like eating all of your peas before you eat the nice stuff on your plate for dinner. Sorry to any pea lovers out there!

Right, I WENT TO THE FAT DUCK! And it was bloody amazing! I went with my friend Kirstie, her Dad and his Girlfriend and I think we all had an incredible time. The restaurant it’s self was actually pretty hard to find. It’s in Bray, in Berkshire and it didn’t really have a sign or anything, just a woman standing outside what looked like a pub in a Victorian dress! We followed her in and stood in a mirrored room for a minute or so and then we were taken through to the dining room.

We started our meal with a small liquid nitrogen meringue, flavoured to a cocktail – I had Pina Colada. It was just like cold, pina colada air in your mouth, crazy! We then went onto a beetroot macaroon with a horseradish filling, which again was so light but the flavour came bursting through!

 

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The Macaroon

 

Next was a dish of a smoked salmon royale with a pea consommé and an artichoke sorbet. That was followed by a soup, this one was a real eye opener to me! It was a rabbit and mushroom soup that was served in a little clear teacup. The left half of the soup was cold and the right half hot, however, they both had the exact same consistency and flavour! Not going to lie, I was pretty mind blown!

Next on the list was a box of cereal… so I always remember my Nan and Grandad buying these little variety boxes of like 8 different cereals and you’d always eat coco pops first and cornflakes were always left last! So this was a similar idea but with completely new ‘cereals’. The cereals were flavoured as tomato, bacon, black pudding and the milk poured on top almost solidified to enhance that kind of salty, greasy fry up kind of texture – ok, I’ve made that sound disgusting but it was actually really good!

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Our cereals with our toy to build!

Our next adventure was sound of the sea! The waitresses brought out a huge sea shell for each of us with headphones in it playing ocean noises. And then a postcard was brought out to me, now beforehand Kirstie had been sent some questions through from the Fat Duck and one of them was what is your favourite childhood memory. I lived in Cyprus with my Mum, Dad and Brother from the age of 5 -9 and I said that’s where all my best childhood memories are. So on this postcard it had a picture of Cyprus and on the back it was addressed to me and said ‘Childhood in Cyprus’. So I was pretty in awe of that!

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Anyway, the dishes…the first dish had a sea foam with pickled herring, pickled octopus and samphire, and it was definitely fishy! The next were three little ice creams! The first a celery and watermelon rocket lolly, the second a smoked salmon, avocado and horseradish twister lolly and the third, a crab ’99’! Next on our seafood stop was a jellied crab sitting in a rock pool like plate. The waitresses poured over a crab consommé to melt the jellied crab and reveal some caviar and flaked crab!

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These are the ice lollies.

We then moved onto a forest theme, the first dish was a mushroom and truffle dish with lots of different textures but predominantly these flavours – now not being a mushroom lover this didn’t really hit the spot for me but the presentation and work that had gone into it was incredible! We then had the ‘Mock turtle soup’. This came in a clear teapot in which we had to dunk golden tea bags into a clear beef consommé which we then poured over what looked like a quail’s egg (actually an artichoke jelly) with some pickled vegetables and some smoked ham pieces. This was a fantastic dish and the beef consommé had such a rich flavour! Then a tiny toasted egg sandwich was served.

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Next we were given our ‘menus’. The starter was a cuttlefish cannelloni with textures off peas, the main was venison, which was so succulent it was almost melt in the mouth! The dessert was a selection of textures of dessert wines and grapes, I really enjoyed this! The textures of cold sorbet and a biscuit crumb with a caramel shard was perfect! Next we were served 5 little whisky jellies which varied from strength, well I ate them all so I think I might be a new whisky convert!

The light above us then changed to a night-light colour, to show we were reaching the end of our meal. We were given fluffy spoons that smelt like talcum powder and the dessert was served after we all had a malted milk meringue. The dessert was a malted milk crumb with meringues, a caramel filled marshmallow and a goat’s cheese sorbet and it was delightful!!

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Here is our dessert.

The last course was called ‘Kid in a sweet shop’ which was fantastic, a tiny little Doll’s House/ sweet shop was wheeled out and opened up to reveal lots of little drawers. So like I said before we had been asked a few questions and one of them was what is your favourite fruity flavour: Strawberry, Raspberry, Apricot or Blackberry. I said strawberry and was served 4 little strawberry sweets, some you could even eat the wrappers from! They were all lovely!!

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We had such a fantastic evening and even got to look in the kitchens at the end! We didn’t get home until about 1.30 am but I think it was worth it!

On Friday 22nd April we had our annual Teenage Cancer Trust Dinner! It’s always such a great night with friends and family and this year we determined to go bigger and better!! We managed to get the most amount of guests we ever had and this year we had some really generous donations of raffle prizes and auction prizes. I think we were all willing to really push it this year!!

I was in the pastry kitchen this year but I did sneak off for some peeps of what was going on in the main kitchen and the restaurant a few times – I’d decided I wanted to be a bit of a photographer, well that was my excuse and I was sticking to it!! We were really highly supported this year and with some new ideas like the ‘photo booth’ and Teenage Cancer Trust coloured pick ‘n’ mix sweets on the table, I think our guests were suitably wowed by the evening! With many saying it was the best menu and dinner that we had held!!

I think I enjoyed it most this year with many of my friends and my Boyfriend, Will’s friends being there too, it really was a fun night! I did a video this year instead of a speech which I think really took the pressure off! Also I was worried if I did a speech I would just cough all the way through!!

We managed to raise just under £5500 which is the most we’ve ever managed! This means over the past 3 years we’ve managed £15000!! I couldn’t be more thankful to all of the Chef’s, students and other fantastic people who helped out, and of course everyone who came to support us! The meal tends to sell out really quickly so this year I had some friends ask if there was a way they could donate to Teenage Cancer Trust so I have set up a Just Giving Page… feel free to take a look! Thank you so much to everyone who has already donated!

https://www.justgiving.com/Emstoasttoteenagecancertrust?utm_medium=email&utm_source=ExactTarget&utm_campaign=20160506_70371

Here are some photos from the evening:

So that is me for know, I’m sure you’ve had enough of me prattling on! I’ve already started the Bucket List but I think I’ll save that for my next post, hopefully I’ll have done some more by then too!

Over and out! For now!!

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Ding Ding… Round 2!

I’d like to start off by saying thank you everyone for the such supportive responses that you gave me to my last post. I know it was a hard hitting one and I was a little bit more matter of fact then I sometimes can be but I think sometimes you’ve just got to be honest when you’ve had a bit of a tough time and it made me feel like a real weight had been lifted! So thank you for embracing it so well!

So I spent a nice peaceful Christmas at home – I don’t think I went to London once for an appointment – I promise I wasn’t boycotting hospitals or anything! I just didn’t get any hospital appointment invitations which I was really quite happy about!!

I even managed to get to some kind of even keel over Christmas! I had the staples pulled from my head which really wasn’t as bad as I expected (and I did keep them, I’ll let you decide for yourself if that’s a bit weird or not. For what it’s worth I think I’ve already lost them, well you can’t blame me, I’d only just had a brain tumour removed, I can’t remember everything! 😉 ).

I even managed to get into college a few times, do some Christmas shopping (well no one was going to stop me doing that!), meet up with lots of friends, had regular physio on my arm which was getting noticeably better everyday and even made the desserts for Christmas day!!

It really was a nice Christmas and new year! It was a slightly busier festive period than usual but sometimes it’s nice to do something completely different and it was a lot of fun! I made a chocolate orange tart, red velvet cake and white chocolate log! Considering I only have one and a half working arms I was very impressed with myself! Although because (again apologise but blaming brain surgery because I’ll take any old excuse!) I stupidly forgot to take photos!

So I had a few appointments lined up for the beginning of the new year and the plan was to get back to college. But of course it never runs smoothly does it?!

So on Monday 4th I went up to London for an appointment in London, I felt fine – I’d had a handful of seizures over Christmas but I thought maybe that was all just part of the moving on with brain surgery thing but things just got progressively worse over the week. My arm started getting weak again and my left leg started to feel quite unresponsive too! After the local physios coming around on Thursday they really weren’t happy and an emergency MRI was booked for me on Friday 8th.

Friday to be honest was a bit of a shit day. I woke up and just knew I felt wrong. I was struggling to walk, my left arm was just floppy and I was a bit of an emotional wreck. We went up to London on a train and after falling on the train we decided to get a taxi to the hospital. I had quite a nasty seizure in the taxi and once we got to the hospital I was rushed to A and E. The nurses and doctors were so on the ball that I was up on the Teenage Cancer Trust ward within an hour and I was already feeling a lot calmer knowing I was in the right place.

I’ve got to give so much credit to my Mum there. Normally I cry she cries – which is fine with us, sometimes it’s nice to have a crying partner! But she was so calm and concise through those crucial moments that it made me feel a lot better and weirdly proud of ourselves!

So I got an MRI and a CT scan done within the next few hours and by the evening my Mum had head home and Will was staying over night.

We saw the Doctor in the morning who had a brief look at the scan and said the tumour had come back.

The first thing that ran through my head was that was bloody quick! To be honest I had kind of expected that. I was glad to have an answer to be honest and it definitely didn’t hit me like a tonne of bricks this time!

So I stayed on the Teenage Cancer Trust Unit until Sunday and was taken to the brain surgery hospital on Sunday night ready for surgery with Dr Kitchen again on Tuesday morning.

I was probably just as scared this time for surgery – let’s be honest, its never something you’ll get used to but it was all a very similar procedure I believe.

I came back to the ward on Tuesday afternoon, projectiled everywhere again – this time it was a very impressive amount (sorry if that’s a bit graphic!) And then was in and out of sleep until about 6 in the evening to which Dad thought it would be highly amusing to see how far we can get through the evening standard crossword whilst I’m quite frankly off my face with morphine trying to force feed me carrot and swede (which actually wasn’t that bad!). I’m pretty sure I drifted off at 8pm and don’t remember much until the morning.

I know I didn’t have any hallucinations about giant bean bags or radiators this time unlike last time!

It was another difficult trip in hospital – like I said, its never gonna be easy and its never going to be home but I think we handled it better this time. I only had a few Teenage ‘I want to go home!’ Moments this time and I’m sure the steroids don’t help! Again, thank you Dad for putting up with my 6 o’clock tears and various shenanigans!

I had a drain in my head removed on Wednesday which unfortunately is just as disgusting as it sounds but once that was out I was free to walk around a bit and I soon found out my left leg was pretty much back normal (touch wood!) Which was a huge relief and my arm was slowly getting there too. I went down for an MRI on Wednesday night and soon was told that they couldn’t see anything on the scan. Again (touch wood) some good news!

I stayed in the hospital longer this time just to keep a closer eye on everything and I’m pleased to say (again touch wood!) No seizures for almost 2 weeks now. Fingers crossed it’ll stay that way for a while.

I managed to get home on Saturday night and felt in a better place this time I think. I was so relieved to be home and we celebrated with a massive Chinese takeaway (when I say massive I mean 11 dishes between 4 of us, we went all out!).

I still haven’t got many answers though I’m afraid – we presume that maybe some tumour was left from last time (all it takes is a few cells!) And I just wasn’t lucky enough to get it all removed the first time.

But I do have a plan. The ‘freaking lazer’ is coming back! Yes, I’m starting radio therapy on my brain in a few weeks to hopefully keep this little nasty bugger away!

After the results on my latest chest CT scan they seem quite happy with how I’ve previously responded to radiotherapy so we’re gonna give it a go in a few weeks. So yes, staying in London again for a few weeks but at least we’re doing something (and I’m desperate to go on an Oxford Street binge soon so I’m all up for that!!).

That is me up to date health wise I think! Sorry if it’s another shocker but I do have something very exciting to tell you which has kept me in high spirits recently!

I went into college just before Christmas and I was given quite a surprise! I’ve been given an award from the Association of colleges and there is going to be an award ceremony at the House Of Commons – YES, HOUSE OF COMMONS, On February 1st. So I’m really quite excited for that!

It’s always good to end on a nice note!

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!