Ellen MacArthur sailing, Sept 2017

So, as most of you know, we are offered spaces every year on the Ellen MacArthur sailing trips around the Isle of Wight. Ellen MacArthur is the hero of a lady who sailed around the world single-handedly in 2005. On top of being a heroic sailor, Ellen set up and continues to run her cancer charity to help young people who have received a diagnosis. Her charity works with young people from all over the UK, aged between 8 and 26.

This year, we were given spaces in their last trip of the season in September… bit nerve wracking considering we’d likely be catching the tail end of the hurricanes and bad weather from America!

Four of us travelled down to Southampton, jumped on a ferry and were taken to East Cowes on the Isle of Wight. We took part in icebreaker sessions and team building, having the opportunity to meet the other 35-40 people that we would be spending our week with. We settled into our boats and sailing groups pretty quickly, claimed our beds and started to get pretty aggressive over games of Uno and Trivial Pursuit!

Sleeping on a boat is a pretty special experience – it’s something that not many people get the opportunity to do, particularly on a small boat of only 6-8 people. The boats were surprisingly spacious! Being part of the Ellen MacArthur group is really lovely; for the young people who came on the trip, it’s always good to meet others in a similar situation to you, who have been through the same things and who have the same worries. It’s an opportunity to share your experiences, your highs and lows, or actually, to put your diagnosis to one side and make some incredible friends.

The weather wasn’t too awful in the first two days (at least that’s what we thought until we got out on the water!) At sea, everyone is given the opportunity to pitch in, help out, steer the boat, learn how to manouvre the sails, anything you want! Because you work as a team throughout, you bond really quickly with others on your boat and you feel like you’ve known each other for much longer than just a few days! The first two days of sailing were brilliant – we had the opportunity to sail in quite challenging weather conditions, which actually made the experience really fun – and ever so slightly terrifying.

On our third day, after a night of sleeping on quite a rocky boat (!), it was decided that it wasn’t feasible to go out sailing, so we went to Osborne House instead, a big old place built by Queen Victoria. It was really interesting to see something different,walk around the grounds and have cups of tea and ice cream on the waterfront. Like this day, our trip didn’t focus entirely on sailing – we were able to get involved in loads of different activities and socialise with people from other groups. We had an amazing BBQ on land, we went crabbing and we had a bake off competition…… which my boat totally won, not to brag or anything…

In all, our four day trip was an adventure and it’s something that I’m sure our young people will always remember. We love the EMCT and everything they’ve done to support and encourage us!

 

 

Advertisements

A year on…it’s okay

It’s been just over a year since I finished treatment for APML Leukaemia. A lot has changed since the last time I wrote about my experience and I thought it was about time I wrote a few things down that have happened to me in the last year, if not for anyone else, but for myself.

I’m currently laying in bed on a Thursday afternoon following a particularly painful Bone Marrow Aspiration where I would usually be sat at my desk in work.

I was lucky enough to get a job a month after finishing treatment (although my doctors told me I had to wait 3 months) but to me it was getting back to normality and something I could control.

It was a completely new career path to what I was doing previously, but exciting none the less. I’m happy to say I’m still there almost a year later and am still learning new things every day.

So, what’s happened in the last year? A bloody lot!

As I said, when I finished treatment I wanted to get back to normality and it almost felt like learning to walk again and starting adulthood all over again. I booked two holidays, a couple of weekends away, started saving for a house deposit and settled into a quiet Christmas and New Year at home in comparison to the rocky start I had the previous year.

Going into 2017, I was so optimistic that there was loads I was going to achieve and that my life would be back on track after the minor setback, but it wasn’t long until I realised my priorities had completely changed. The realisation finally hit me that I had had a near death experience and that if I hadn’t survived there would be so much in life that I would have regretted not doing.

Considering all this, I thought I’d make the most of the fact that I was still alive and had time to do everything I wanted and not have any regrets when the time comes.

 

This resulted in several bad decisions, a bad break up and a little bit of rebelling, but ultimately my way of taking my life back and being able to be completely selfish.

When I got to the year mark of finishing treatment, I was so proud of myself to be able to look back at what I’d been through and that I’d come out the other side but also a bit disappointed that I hadn’t really achieved anything I’d set out to do. I hadn’t been travelling, I hadn’t bought a house, I hadn’t cracked the radio world and it left me feeling a little deflated.

It’s easy to forget everything you’ve been through when you go back to living a normal life and get hung up on even the smallest things. I was deflated that I hadn’t achieved 3-5 years’ worth of stuff in 12 months because I needed everything to get back to normal.

But 12 months after treatment things can’t quite get back to normal.

Following my complications during treatment I still have regular check-ups for various things. I had to have my fertility checked following chemotherapy my heart scanned regularly and regular bone marrow aspirations.

It’s so easy to put a big smile on my face when people ask, “oh you’re all good now though aren’t you, back to normal?!”

Yes, I am in the sense that I’m cancer free, but there are still many things that affect me day to day.

I had my fertility checked in May this year and thankfully it was all good, which was one check off the list to getting back to normal. It wasn’t until I had a heart scan that I found out my heart function hadn’t returned to normal and that my body may not be able to handle the stress of carrying a baby. Obviously, I smiled and laughed it off but it wasn’t until I turned to my mum who had tears in her eyes and said, “it’s still not over is it”.

Unfortunately, it’ll never be over. There is always going to be something that will impact how I want to live my life from the life changing experience I had. At the moment that means regular, very painful bone marrows that I have to endure every couple of months (2 years to go). Meaning I can’t leave for more than a month because I’ll be right back in that hospital bed for another check-up.

I am not one to dwell and I always make jokes about my experience, playing “the cancer card” to get someone to make you a cuppa etc. but truth is, and excuse my language, it was f*****g s**t!

But now it’s all about learning how to change my timeline following the slight and ongoing inconvenience that is/was cancer.

Throughout all of this I count myself very lucky. I have friends who haven’t been and who aren’t as lucky as I am today to which I always feel ungrateful for even saying half the things I do. I still moan about being “so ill” when I get a tickly cough because as I said, it’s so easy to forget how bad it actually got.

And it’s so easy to look at others and be jealous of what they’re doing and question why am I not doing these things but all in all I am so grateful for all of the experiences I’ve had over the last year, and a lot of that is down to having cancer. And whilst there are so many things I wish I could change, I wouldn’t be living the life I am living, had I not had that experience.

So, what has a year following treatment taught me? Cancer is a b-word but it’s taught me that it’s okay to be selfish and live my life how I want it. It’s okay that I’m 23 and haven’t moved out or seen a lot of the world yet. It’s okay to hurt after a procedure because you’re not as used to being in pain anymore and you know what, it does hurt like a b***h! It’s okay to not like your scars on some days and love them on others. It really is okay to feel deflated about not achieving what you’ve wanted to because in actual fact that is normal for any young adult. And on those rare occasions that I do realise it’s okay to have not done even half the things that I want to do like other 23-year olds, I realise most 23 years old haven’t been through half the things that I’ve been through…and that’s okay.

By, Hannah A.

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!

IMG_0069

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.