Update : June 2017

We’ve had a busy few months again – we’ve had lots going on at the Unit and quite a few nice social activities to balance it out.

We went to Cardiff Castle again this year for an after dark ghost tour. Our tour guide, James, was very helpful and led us round the castle in the dark with little torches to light our way. A few of us came close to tears and some threatened to leave!! The tour was really interesting and we learned lots of historical facts along the way. A few of us saw spooky things in the dark and we heard lots of creaks and sounds! We’ll definitely be going back!

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A group of us were also invited up to GE Aviation in Caerphilly, who support TCT Wales a great deal. We were taken on a tour around the factory and we were shown the different stages of engine cleaning and engineering and told some mindblowing facts about how much airplane engines cost to build and run! This was a very different experience and a really interesting tour – we’ve also been offered opportunities to do work experience at GE, which is amazing.

Escape Rooms in Cardiff offered us two free games for the young people on our Unit, which was lovely of them! I somehow ended up in a dark room filled with plastic spiders and snakes! We worked our way around an Egyptian Tomb room, while the other group had to work on a Sherlock Holmes puzzle in their room. We made it out of the room (after a couple of helpful hints from the staff) with 4 minutes to spare!! The second group made it out with only a few seconds left. We were then invited to relive Crystal Maze and catch silver and gold in a fan room. We let the other team win….. 👀

For a year now, we’ve been involved with Radio Glamorgan, our hospital radio station. We were invited to take part in their 50th Anniversary broadcast, where they were broadcasting live for 50 hours, each hour representing a year. We hijacked Byron’s show in the studio, playing songs and chatting for two hours. We then chose songs from 2012-2014 that we love, which would be played on the radio the next day.

As always, although we have had some lovely moments over the past few months, there have also been difficult times. Some of our young people are unfortunately no longer with us, which is always really difficult. From our point of view, we were incredibly lucky to have known them and been a part of their lives.

Royal Albert Hall 🙌🏻❤️

Every year, Teenage Cancer Trust puts on a weeks worth of shows at the Royal Albert Hall. These shows not only aim to raise awareness and money for the charity, but they are also an opportunity for the young people under our care to have an amazing experience. Last year, we were allocated tickets for Bring Me The Horizon, who were incredible. They were supported by Paris, who took the time to come along to our music workshop and meet everyone. Every year, our young people get to take part in a workshop, write original songs, learn how to play instruments, meet the bands and celebrities and watch the concert.

For the concerts this year, we were given the Tuesday evening (March 28th) but we weren’t told who we would be seeing. Thankfully, our patients were eager to come along regardless of who was playing, so our spaces were filled up pretty quickly! A few weeks before we were due to go, our act was announced….. the almighty Ed Sheeran!! As if that wasn’t amazing enough, we were told that Busted would be supporting him – dream come true (for me).

We had a very eventful train journey up to London – you can imagine how excited everyone was!! When we got to the Royal Albert Hall, we were taken straight into the music workshop in the Elgar Room. Our group, along with groups from Newcastle and Surrey, spent a few hours writing original songs and learning to play instruments. They finished this off by performing the two songs to an audience of venue staff…..and then Busted walked in. I like to think that we kept our cool but to be honest, probably not! They were lovely and they stopped to have photos with everyone (including a very excited Youth Worker).

After the workshop, we were treated to a tour round the RAH and we were able to watch the soundchecks on stage from high up in the auditorium. After getting fed in the staff canteen (seriously amazing), we rushed to get ready for the highlight of our visit, meeting the man himself.

We were taken down to the dressing rooms backstage where we waited for Ed to come in. We were told that we would be the last group to be introduced, as we were quite rowdy and excitable. Ed Sheeran rocked up in a hoody, jeans and daps and he was absolutely lush. He stopped to speak to everyone, he had photos, took selfies, made videos and just made everyone feel so special. When it came to meeting our group, Ed was ambushed. One of our group flirted with him….no names mentioned… and everyone was able to have photos taken with him. He was a gem and he even agreed to sign a set of vinyls that one of our group had brought from home. I think meeting Ed was a highlight for everyone, he was amazing!

Once we’d calmed down a bit, we were taken to our seats in the auditorium. We were sat to the right of the stage with an amazing view! I think we spent most of the night on our feet dancing and being filmed by the JTV camera crew . After Busted had finished their set, our group was told to go backstage. After a few tense minutes, the three groups were led onstage after being introduced by Roger Daltrey! For the young people there, this moment was magical – the entire crowd turned on the torches on their phones and shone them at the stage. Even watching from backstage, I was speechless. One of the young people from another Unit gave a lovely speech and thanked everyone for coming to support TCT. The entire audience cheered and clapped for our young people – it was amazing and I can’t imagine how they must have felt on stage.

This moment was followed by the best concert ever – watching Ed Sheeran perform live was amazing. I think it highlighted just how talented he is – how can one man do all that on his own?! We danced and sang for the next few hours, finally stumbling into taxis at 11.30 and heading to our hotel. Some of our group were far too excited to sleep, whereas I was flat out within 3 seconds.

The next day consisted of breakfast, a few sore heads and several sore throats. We went for a bit of dinner (where we may have put the speakers on and blasted out Ed Sheeran – sorry not sorry!)

The train journey back was much more subdued than the journey up! I don’t think any of us are over it and we’re already excited for next year. Fingers crossed that Westlife make a comeback and decide to support TCT in 2018…..

TCT Takeover – Radio Glamorgan

A little over a year ago, I was put in contact with Jamie Pritchard (superstar radio DJ) and we spoke about the possibility of bringing together Radio Glamorgan, the hospital radio station, and the young people from our Unit. We decided that for two hours every month, we would bundle into the Radio Glamorgan studio and completely take over, play whatever music we wanted to and talk about anything and everything!

Our first Takeover was on the 28th of February, 2016. I took Hannah along with me, who was recovering from a very stressful and difficult month of being unwell. Her boyfriend, Lewis, came along too to chaperone us! For me, the first show was incredibly nerve wracking and I was very conscious that there were people listening to me talk! Hannah had completed a degree in Radio before she started her treatment, so she breezed through it and was an absolute pro. We spent an hour talking about the Kardashians and films, and we played our favourite songs. I realised afterwards how valuable the radio show could be to us as a group and how much our young people could get out of it.

We continued our Takeover every month, gradually doing longer shows and talking about a variety of topics. After a few months, some interest began to grow within the Unit and we were able to get a few more people involved. Fin and Hayley have taken part in the last few shows and have been amazing! It’s wonderful for me to see our young people take part in something like this after so many months of going through treatment and being unwell. It’s something that we really enjoy doing and I can safely say that it has become the highlight of my month!

I’m surprised that Jamie hasn’t lost his mind after chaperoning us and helping us for over a year – he has to reign us in sometimes, we get a bit excited on air! Jamie has been brilliant with us – he knew Hannah from before treatment, so although it was a bit of a shock for him to see her unwell, he handled this brilliantly and he has been amazing at guiding us through the last twelve months. He has always been eager for this project to grow and for more young people to get involved and he really takes an interest in our Unit and the work that we do.

I hope that this project will continue for a long time and that we will continue to develop it and get other patients involved. It has become something very powerful and it has given us the opportunity to have a voice within the hospital and to highlight the incredible work that our Nurses and Doctors do. It has also given our young people the opportunity to do something completely different and be involved in a project that not only teaches them practical skills, but also gives them the chance to offload and have fun in the midst of all the chaos. I am incredibly grateful to Radio Glamorgan, and particularly Jamie, for helping us to do this month after month. Love you guys!

Anna x

 

 

 

Gaming in hospital – Tom

It soon became apparent that I would be in hospital for a considerable amount of time; I decided to put money towards the purchase of a gaming laptop, having previously viewed numerous documentaries on Netflix of the advantages of PC Gaming over conventional console gaming, I have long had a burning desire to experience the difference for myself. This platform of gaming offers the ability of Modding games or regulating the system to suit your needs, which meant that it would be ideal in a hospital environment as it gives you the ability to make games easier or harder depending on how your feeling with treatment etc. You do this by running codes and scripts in the background of offline gameplay, by using software such as Cheat engine . With consoles, you are firmly restricted in what you can play. It is also much easier to connect a PC to the hospital Wi-Fi than a regular console to enter the world of online gaming. PC gaming is also noteworthy for its focus on the Graphics Processing Unit and DDR3 memory, making PC gaming faster and slicker than console gaming.

As a child, I lost the use of my left side, thus, limiting my ability to play games that require the use of two hands. After years of determination and educating myself on how to play consoles one handed by watching YouTube tutorials, I had not learned how to play PC one handed. I overcame this problem by purchasing a gaming mouse with extra buttons allowing me to enjoy every function within the game one handed. Additionally, with PC gaming you can re- map specific buttons- making it easier to play one handed.

Gaming has long been a passion of mine, as a child, I used to enjoy Crash Bandicoot on PlayStation 1 and GTA on Play Station2. Having been unwell all my life, gaming has always been a way for me to stay sane when my health was deteriorating and doctors were unable to tell me why. I was always excited for the next console or game to be released.  The benefits of gaming are heard less of than the disadvantages that you hear in the media; “If you play games you will go out and react to the game by shooting someone”. Gaming in the post-modern period offers immense benefits, particularly in a difficult situation like this. The first advantage of gaming to me is that it kept me occupied during the time that I was in hospital. Games like Call of Duty offer you massive worlds to explore and enjoy, which makes you forget about the stress of the hospital. Some of these games are so challenging, I got so stuck in that it took my mind off the transplant. When playing games, you are also able to unlock achievements, this soon turned into a competition as I wanted to see how many achievements I could unlock before I got discharged. Games also have some great storylines and are not simple to master. Trying to work out some of the skills needed to play the games also took my mind off the pains of the hospital. I found that some of the nurses from the hospital also had a passion for gaming and them regularly shared stories of how they came…(*typo – this was definitely meant to say GAME!)When in isolation for so long, it was very easy to get annoyed or upset as I could not have any contact with the outside world; through gaming, I could overcome these emotions. By using Steam’s forum, I could also keep contact with friends and meet new ones.

At home recovering, I can use Xbox play anywhere which is a function that was released when I was an inpatient, following its confirmation at E3. This means that I can play the same game on Xbox and the gaming laptop. This feature is particularly advantageous with regards to portability. Now, I am waiting to purchase a Nintendo Switch for the same reason and to re- live some of the retro gaming offered by the N64 and Saga Mega drive. I soon discovered on TCT that other patients had the same passion for gaming and shared similar experiences to myself making gaming a perfect subject for social interaction and competition.

Lymphoma Road

Receiving the gut-wrenching news in, August, that haematology consultants at University Hospital of Wales, Cardiff believed Ryan had a very rare form of Lymphoma, known only to Asian and Latin American populations of men over the age of 50 was one of the hardest days I have ever experienced. It actually came as no surprise to me, but trying to explain it to a scared 14 year old autistic boy adds to the difficult situation.

There were still further tests needed as a few experts were baffled to see this cancer in a 14 year old Western European Caucasian boy. We were given the confirmation diagnosis of EBV positive NK/T-cell non-Hodgkin Lymphoma on 2 September 2016. Steroid Chemo started while planning began ready for 5 weeks of intense Radiotherapy before commencing 6 months of SMILE chemotherapy protocol.

Our medical team consists of haematologists, pathologists, histologists and immunologists who all agree that an episode of Glandular Fever in 2015 set off a chain reaction of the Epstein-Barr virus invading his T-cells ultimately causing the cancer.

Although having to travel 106 miles for treatment is hard, having a dedicated TCT unit for central treatment means we are in the world class hands of experts who know Cancer inside out. It has been a learning curve for us all as a family learning to live with Cancer and the doctors never having a child go through SMILE chemotherapy protocol before. Ryan really is 1 in 3 million.

You are welcome to join our winding, bumpy road trip about his Autism and Lymphoma journey at BellybuttonPanda.co.uk

by Sarah, Ryan’s mum.

 

My treatment – Tom.

I received a bone marrow transplant in the summer of 2016. Unlike most patients on the Teenage Cancer Trust Ward, my condition is one that affects my immune system. Rather than being treated for a malignancy it was hoped that the transplant would support the production of a specific type of protein in my blood called ADA2.

ADA2 deficiency is rare; I was diagnosed by after taking part in a research study at Great Ormond Street Hospital for children at age 21. I had been treated at Great Ormond Street hospital since having a brain haemorrhage which left me with left sided hemiplegia at aged 09. Initially , I was treated for 4 , 5 months and travelled back to London weekly and then monthly to receive treatment. We used to wake up at 06 am to travel to London by 09 am!  

It was difficult to keep up with school work during this period, but I was fortunate enough to have a Learning Support Assistant to help me keep up and take notes. I managed to get to university where I studied Sociology at Undergraduate level, and decided to further my studies to work towards a Masters in Criminology, which I had to suspend during the transplant.

I had the transplant on B4 which went as expected. The marrow was in 2 bags which went in over 07 hours I was in for 06 weeks waiting patiently for my counts to recover whilst playing Modern Warfare on PC.

Recovery at home is still ongoing. As a patient who has been unwell since age 03, experiencing weakness, fatigue and pain daily, I feel that the transplant has made me feel much better. I cannot remember a time when I felt as good as I feel now. I am still on medications but weaning slowly. Hopefully, the transplant has worked and I will continue to recover along a positive path.

What we’ve been up to….

Hi all!

It has been a very long time since we updated this blog, apologies! We have had a really busy year on the Unit 😊 – these are some of the things that we’ve been up to….

 We were allocated tickets to go and see Bring Me the Horizon and Paris at the Royal Albert Hall, as part of TCT’s week of concerts. We took part in a music workshop through the day, followed by some of the nicest food ever! We were lucky enough to be taken to the band dressing rooms so we got to interview them before the show! Halfway through the gig in the evening, we were led on stage. The audience turned on their phone lights and we were faced with our sea of supporters, it was incredible. We will be going back this year and we have been lucky enough to be given tickets for the Ed Sheeran night ❤️ very excited!

  
 
We have had quite a few outings over the last year; Judgement Day at the Millenium Stadium, Busted concert and a couple of comedy nights at the Glee Club in Cardiff Bay! 

   
We had our Unit relaunch last summer, which was a lovely opportunity for us to meet some of our local supporters and Myrna White, one of our biggest national TCT supporters! Most importantly, we got to eat a huge amount of cake and our Unit had its five minutes of fame on the news.


We were offered the opportunity by Western Power to take part in a Bushcraft Day near Merthyr Mawr. We spent the day making arrows and shelters, which was a really fun and different experience. We were able to team up with some of the Renal patients in the hospital, so it was nice to meet others who are going through different kinds of treatments.

  
These photos are from a place called Milly’s Days in Buckinghamshire. They are an incredible charity who provide respite opportunities for different groups, such as charities. They offered us a day at their house, where we cwtched animals at a petting zoo, were fed until we nearly popped, and we were allowed to drive their boat down the river! We stayed overnight and had a lovely bit of time to relax.

  
Find Your Sense of Tumour (over 18’s weekend)- this was held in the Hilton at St George’s Park, where the England football team train! It was an incredible venue and we were able to take part in some incredible workshops. Some of the speakers were inspirational, such as Brian Lobel and Matt King, people who have been through extraordinary things and come out the other side smiling.

  
Teen Spirit is a group of people based in Cardiff who fundraise for TCT. Every year, they hold a ball and raise money for us, so this year, we were given a table to attend. The ball was lovely and it was amazing to see how much people paid in the auction!

  
There are no words for this picture of Louise…. 😀 we went to Revolucion de Cuba and took part in a cocktail making masterclass and had the best tapas in the world (enough to feed 5000 of us). Despite me getting blindfolded and walked around the bar like a maniac, this was a really fun night which we will definitely do again!

  
Cardiff Airport Fire Station told us that we would be welcome to go along, meet the team and have a look around the station. We were amazed when they let us go in the monster truck sized fire engines and have a go of all the controls! They dressed us up in their call out gear, which was really heavy, and showed us the ropes. They were a really lovely team of people and we are planning to go back soon! 

  
The lovely Craig Bellamy came to visit our Unit a few weeks ago! It was good to meet a celebrity who just wanted to come and chat to patients and support us in whichever way he could. He was really lovely and made time to everyone (even the sad Youth Worker and Nurses who asked him for autographs and selfies!!)

  
We have had an amazing year! We have been privileged to get to know new people and experience new things together. 
Anna x