I WASN'T EXPECTING THAT

Teen Post by Elisha Searl - http://aspoon-full-ofsugar.blogspot.co.uk/

Writing this post has been running through my mind for the past few days. Do I celebrate it? Do I forget it? The day that changed my life. The day I was diagnosed with cancer, at a young age of 19! Bloody 19! It seems so long yet not so long ago, if that makes any sense. Cancer, really, me? I still feel baffled by it all on this very day. A teenager working on a business career and getting drunk at the weekend, normal me spending time with my wonderful, happy family and looking forward to a holiday I booked with the girls.
That day, four years ago, I WASN'T EXPECTING THAT.

 

So much has happened and changed in these past 4 years, I have lost a lot but also gained so much. I have lost a part of me, beautiful friends and a physical loss but at the same time I have gained a lot of friends, experience, support and memories.
Having a cancer diagnosis has been a rough little journey, a constant feeling of happy one minute and sad the next. I still suffer with getting my head around how I had to fight for my life and how hard it is getting used to this new, normal me.
Some people just float on and forget about cancer and everything that happened. For me, I can't forget about it, so I embrace my journey and experience, which is why I share it with you on here and work in fundraising to raise awareness of charities and cancer in young people.

I find it hard to forget about because now I have involved myself in the cancer world. A community which is very loving and supportive yet very hard and emotionally draining.
There just isn't a happy medium. Cancer is an emotional battle and having all the treatment and being in hospital for 8 months was the easiest part, it's being alive and surviving that is the hardest part. Something that keeps me going is feeling blessed that I am still alive and well.

I believe that everything happens for a reason and for some reason, I was given that awful news, which has shaped the person I am today and I wouldn't change it.
That's a lie, I would like to change some things! Stopping pain, fatigue and chemo brain and for there to be a cure for cancer. My diagnosis has given me so many opportunities I couldn't imagine of ever experiencing if I wasn't involved in the cancer bubble. I am forever grateful of the amazing support from all the fantastic charities that are out there. Without generous people donating, there would be little support and care for young people like me!

I am looking forward to another year being cancer free and celebrating 4 years post stem cell transplant on 29th November this year. Happy days!!

"Two teenagers diagnosed with rare forms of cancer have fallen in love after meeting through a dedicated support group."

Part of this post has been copied from MirrorOnline. To read the full article please click here http://www.mirror.co.uk/news/uk-news/smitten-teen-couple-who-met-7943997

 

Katie-Lily Bryant, 16, from Surrey, and Rian Harvey, 17, from Dorset, are enjoying life together, with a special ability to support each other 'in a way that other people are not able to'.

 

 

Katie-Lily, who lives near Farnham, was diagnosed with stage four Hodgkin's lymphoma in May last year after finding a 3cm-by-3cm-sized lump on her neck.

Unbeknown to her, her future boyfriend had been diagnosed with Acute Myeloid Leukaemia - an aggressive form of the disease that rarely affects youths - two years earlier.

 

"Before my diagnosis, I had been going to the doctor's for 10 months, complaining of headaches and constant pains through my body," Katie-Lily said.

"The doctors were not too concerned because it didn't seem like anything major. However, on May 10 last year, a lump came up above my collarbone out of nowhere.

"The next day, I was rushed through the system to have scans and biopsies. I was diagnosed with stage four Hodgkin's lymphoma, a blood cancer affecting 1,200 people every year in the UK.

"I was only 15 when I was diagnosed. Both my family and I were heartbroken knowing what was ahead of me and that it was life-threatening.

 

 

Katie-Lily underwent her first chemotherapy session at Southampton General Hospital on July 1 - coincidentally, the same day that Rian received a life-saving bone marrow transplant.

For the next three weeks, the then-15-year-old - who also had to undergo an operation to remove a huge tumour - was confined to her hospital bed.

She lost her ability to walk, speak or eat, and was forced to take epilepsy medication to prevent her legs from shaking uncontrollably.

 

She also set up an inspirational blog to reassure other cancer-stricken teens that they were not alone - something she continues to write to this day.

"As soon as I was diagnosed I knew having an unhealthy mind-set would not help me to achieve having a healthy body," Katie-Lily said.

"How could I possibly go through all this treatment if I didn’t have a positive outlook?

"I spent 2015 in a child’s cancer ward. Unfortunately not everyone made it to the end of the year. But me? Yes I had cancer, but I was still there able to fight my battles."

"To me that makes me very lucky."

She added: "I started my blog to help me get things of my chest and to let my friends and family know what was happening.

 

"But most importantly, If there is just one person that is going through similar things and my blog has helped that would make me so happy.

"Knowing that I can make a positive out of a rubbish situation!"

.

Katie-Lily said she and Rian are hoping to turn both of their individual journeys into a book in the future, from 'both a teenage boy and teenage girl's point of view going through cancer'.

"We hope we will be able to not just help other people fighting this awful disease, but touch the hearts of people who have not been affected by cancer," she said.

 

To read Katie's blog, click here . And to read Rian's, click here .

Teen Bethany shares her story

"My name is Bethany and I am 18 years old.

I was an active and studious 17 year old until January 2015, when I was diagnosed with stage 2A Hodgkin’s Lymphoma. Despite feeling physically fit, I found a small lump on the side of my neck before Christmas and was certain it was a cyst or a bruise. I’d never been directly affected by Cancer; I never related Cancer with teenagers either, least of all me, until I cried "My A Levels" in devastation when the words were lodged in my mind. "Blood Cancer".

I began chemotherapy in February and expected to have 4 cycles of treatment. I missed my mock exams and went against teachers, friends and parental advice to quit education and defer my A Levels for a year. I wasn’t going to allow the disease to consume or define me; I knew where I wanted to be in a year’s time. Instead, I continued attending school in between chemo sessions and revised from my hospital bed. The treatment hit me hard. I lost my appetite and felt weak, as if my body gave up on me. The joint pain was immense, unable to walk, sleep or move – draining my energy, focus and productivity in school. It was an endless cycle. My physical appearance changed dramatically due to weight gain, as a result of enormous amounts of steroids, and the loss of my hair. This affected me emotionally, feeling like no one understood or could help, so I kept it to myself. I remember looking in the mirror and staring at the hairless, round and translucent face that greeted me thinking, "This isn’t me. It can’t be me".

Despite the difficulties and dark cycles of chemotherapy, sleep and revision, I was determined to remain positive throughout. I rarely spoke negatively about the experience, smiled and took a day at a time. I donated 14" of my long, luscious, dark hair so I could appreciate a smile on someone else’s face. However, I couldn’t have remained optimistic without the ongoing support of family and charities such as Teens Unite. Teens Unite enabled me to meet like-minded people at events who did understand and could help, whilst making me feel secure and ‘normal’. They offered a glimmer of hope and fun amongst the darkest of times. My first event was ‘Mother’s Day Afternoon Tea’ which was before my treatment started; it helped me enormously by talking to people who had already experienced chemotherapy, whilst receiving advice, tips and reassurance. Other events, such as Winter Wonderland and Go-Karting, helped me to be carefree again and socialise with others instead of feeling like I stood out. I have made some lifelong friends as we can understand and relate to each other completely, therefore I cannot thank Teens Unite enough.

Thankfully, I was announced ‘All clear’ on the 21^st of May – a week before my exams and on my Grandad’s 80^th birthday. I exceeded targets and accomplished my dream grades of A*AA, securing a place at University. Now, I am based at the University of Nottingham and study BA Geography. It was difficult to begin University when fragile, unconfident and embarrassed as though I was being judged, but I’ve found my feet and progressed. I continue to see friends from Teens Unite and appreciate the ongoing support from them, as I believe the period after treatment can prove difficult to deal with due to emotional instability and pressure to get life ‘back on track’. It’s been eventful and surreal, but I am truly blessed."

Introducing, Discover You

We are proud to announce that on Saturday 25th June 2016, Teens Unite will be holding a brand new event for 200 young people who have been personally affected by cancer, which will be sponsored by Global radio.

Held at 200 Aldersgate Conference Centre, St Paul’s; the event will be a conference with a difference. It will be a vibrant, interactive, fun and energetic day packed full of professional speakers, entertainers, games and a load more surprises.

(read more below)

 The day will be completely free of charge, including food and drink throughout, mini massages, goodie bags and programs, and there will be plenty of opportunities for you to visit many well-known health and good food stalls, and take away a whole host of amazing freebies!

This is certainly not an event to miss out on, however we must limit the day to only 200 young people, therefore please confirm your space fast by emailing teens@teensunitefightingcancer.org or call 01992 440091 for more information.

We hope you are able to be a part of this incredible journey with Teens Unite!

5 Years Later

 

Teen Post by Nilani Chandradeva - http://wheninhospital.blogspot.co.uk/

 

This blog is for all the people who have lost what it is to feel "normal" after cancer treatment. Feeling normal is something you expect once treatment has ended, but that instant recovery is not always what you get. 

 

 Normality doesn't exist until it has been lost and craved for. It is something that you can't create again, it is something that comes with time and patience. In my experience, there is nothing you can do to fall back into it any quicker. You slip back into it without realising; you start to live.

After I finished my treatment I threw myself back into the world and everything it had to offer me. I was determined to not let cancer deter me, if anything it motivated more and more to achieve my goals. And this worked for a long time. I used cancer to fuel myself to work harder in all aspects of life. However, after a while, this became exhausting. It is so difficult to be driven by your worst experiences and constantly trying to see the good in all of them. Personally, I found it put pressure on me to be the "best cancer survivor". This meant having my whole life inspired by cancer, which is again, very exhausting. I'm not saying that I have come out of the cancer experience without being influenced by it at all, that would be a lie, it has definitely influenced the decisions I make and the person I am. But it is definitely not WHO I am. This is really important- once you start to find out who you really are, what your interests are and what you stand for- your past doesn't cling on to you. You become your own person and it is the best thing ever.

 If there has ever been a series of peaks and troughs in my life, then it was after my cancer treatment. For me, this struggle with my emotions and identity went on for 4 years. Change was the most important thing for me because it was a change that came at exactly the right time. I had spent enough time trying overcome my emotions or let myself be occupied by cancer and this had not worked. I think I only really started to feel normal again when I didn't try so consciously and only focused on what I was truly interested in. For me, this change was brought about by university. University brought along its own challenges, but I think these are ones that every student goes through. Really, it was quite satisfying to have normal challenges and problems that your friends can relate to! At first, being thrown into an environment where nobody knew about the cancer was really hard. I didn't know how to explain my sensitivity to people- something which was heightened by my experiences with cancer- and often found myself falling into the mind-set of "Well if only they knew about the cancer...that is why what x said made me feel upset." One time t my friend told me to toughen up when I was sensitive about something she had said. This made me so angry! She had no idea what truly had upset me but I didn't want to explain it her either. This would just create sympathy. Instead, I listened to her, I toughened up and this made everything easier. I dealt with it like anyone would if a petty comment had upset them. At the same time, I was enjoying my degree and the social life and learning how to create a small distance from my emotions which meant that they didn't overpower me. Days, weeks and months went by and all this time I had just been being myself. I had been normal. I only realised much later, actually when I went to a hospital appointment which is something that I usually get very upset or frustrated about. This time, that didn't happen. I just had a conversation with my doctor about how I had been doing, and it was then that I had realised I had been doing really well!

I truly know how it feels when it seems like the world has been taken away from you and you don't know how to fit in again. I just want those of you out there who are recovering from cancer to know that cancer in no way defines you. It is an experience and like all experiences it will influence who you are and the choices you make. I am still in touch with many of the friends I made in hospital and I dearly miss the ones who didn't make it and often feel guilty that I am here when they are not. It is so important to not lets these feelings consume you, try to engage with things you love and have a genuine interest in. This will help you to grow as a person and to reconnect with who you are.

 

It's always going to be okay in the end

 

Teen Azreen talks openly about her battle with cancer, and how important it is to be proud of everything which you achieve in life.

 

Read Azreen's full blog here... http://missionpossiblefightingcancer.blogspot.co.uk/

 

"I just wanted to talk about something that had been on my mind for a long while now but I'd been refraining from.

In case you don't already know, I had been cleared of cancer back in March 2015 only to relapse again in June the same year and begin a whole new cycle of surgeries and chemotherapy. I've now been off treatment for almost 4 months.

For those that know me, you know that coming up to this year had been particularly hard knowing that the majority of people I know are... now either graduating, married and starting their families, or in their dream job. All of which I imagined myself achieving at 21. I hate to admit it but it had been the root cause of a lot of anxiety and I beat myself down a lot because of it. It took a while for me to understand, and to teach myself that although nearly everyone I know is attaining "life goals", I've learnt some pretty invaluable lessons over the past two years, the biggest lesson being learning how to be grateful for all I've got, rather than dwell on what I haven't got, live without grudges and negativity and let the people I care about know that I love them.

 Milestones for you would be, getting that promotion you've been waiting for, getting married, seeing your child take their first steps, getting your degree after years of hard work, and so on. Me, I'm achieving new milestones too. For example, cooking a meal without having to lie down from utter exhaustion, finishing a meal without the overwhelming urge to vomit, combing my hair for the first time.

... or the biggest one: realising that just because I'm not on my way to societies definition of "success", doesn't mean I'm not successful at all. I mean, I've pulled myself out of death's claws during a week in intensive care, I've beat cancer twice and I've learnt the value of life - the value of healthy lungs, functional limbs and a beating heart - it's success, just not the same as yours and just because I don't update every other day, doesn't mean I'm not kicking cancer in its teeth everyday.

Finally, for anyone like me out there that's watching everyone they know achieve the things they thought they'd be achieving by now. Stop beating yourself up. You're not a failure. You have amazing things planned for you, and you're going to do them, and you're going to be proud of yourself, and you're going to love you.

It's always going to be okay in the end."

 

 

 

Teen Tommy wins Outstanding Bravery award for his courageousness throughout his battle with cancer

 

 

We are so proud to announce that Tommy, a young person who has been supported by Teens Unite throughout his battle, has deservingly won the Outstanding Bravery award at the London Children of Courage Awards.

Take a read of his inspirational story below, which has been courageously written by his mum Karen.

Well done Tommy!



"Tommy said he had an earache on Sunday 16th November 2014. He very rarely complained about anything and had always been a well child with 100% attendance at school. So when he woke up on Monday 17th morning and said it still hurt I thought I'd take him to the GP to get it checked. We managed to get an appointment so went to get his ear looked at. The doctor looked at his ear and said it was fine, but remarked that he looked a bit pale. So wanted to send us for a routine blood test as he thought he was probably anaemic. I remember thinking that he probably was because I have always suffered with anaemia. So we left the GP surgery and went straight to hospital for a blood test. I received a phone call from the GP saying that I needed to go to hospital to get his results, I asked why he couldn't tell me over the phone, and he said the doctor at the hospital wanted to explain the results to me. I said is he anaemic and he said surprisingly not! So then I asked again, well what is it? He said there is an abnormality in the blood and they needed to speak to me, and that we should go to the hospital ASAP. I then Google searched abnormality in the blood and it came back saying leukaemia, and I shook my head telling myself off for searching it as it couldn't possibly be that because he is not ill, nor tired or covered in bruises, which is what I associated with leukaemia.


 

 

After about fifteen minutes the doctor came in and started checking him all over, and I asked what she was looking for, she said she was just checking him over. I said what are you looking for, what results have you got to tell me? With that she sat on the floor and put her hands on mine and Tommy's knees and said I am checking your son for leukaemia! We both screamed, Tommy's initial reaction was “I'm going to die!” And was just screaming and really frightened, I just kept shouting you are wrong, he is not even ill, I hated her! How could she tell me this, he only had an earache (which had now gone!) I don't remember much else and somehow I must have left Tommy as I had to call Andy. I told him over the phone that he had leukaemia! I was just screaming. I don't remember much else! Everything seemed a blur! I said to the doctor you must have made a mistake, could it just be an infection, she said I hope I am wrong! I couldn't believe this was happening, he had an earache! Not cancer! Tommy was really quiet and kept crying and I kept reassuring him that he was going to be fine, even though underneath I was in bits, crumbling at the thought of my miracle baby boy (our 3rd attempt of IVF) had cancer!



We were then transferred to UCLH hospital and had doctors, nurses, specialist all round us, in a private room on an amazing ward. But I didn't want to talk to anyone. We shouldn't be here! They must be wrong! We were told his plan of treatment and that they would be doing a lumber punch to check his bone marrow, and various tests followed by chemotherapy! This was my little boy, he was scared, I felt sick with worry and we didn't know what lied ahead. We knew we had to stay in hospital for at least two weeks, which was awful, not being at home, not being able to be a family. The things you take for granted suddenly are gone, I couldn't even think about Jack and Gracie at this point I couldn't leave Tommy I just sat holding his hand and stroking his face, crying under my breath. I don't remember about the days that followed this, lots of doctors seeing him, nurses in and out, my phone ringing every few minutes as the news filtered through to family and friends. As the days all become one, we realised that life would never be the same again. I remember the doctor saying that you give us three years of your life and we will give you the rest of your life back! (3 years of treatment! ) 
 

It was all too much to take in, and the plan of treatment and all the drug regimens where explained to us. There were different blocks of treatment, the first intense block was really hard, having chemotherapy travelling backwards and forwards to London whilst he was feeling weak, and no energy. On top of this he was on steroids which affected all his muscles, he struggled to walk up the stairs or walk down the road without getting out of breath. The treatment had its ups and downs, but the hardest points were when he lost his hair, falling out on his pillow, and his face blowing up from steroids. It didn't look like Tommy, but through all of this he carried on going to school as much as he could, with us dropping him off and picking him up. There were several times when his bloods would drop and he would need urgent blood transfusions and platelet transfusions, and whenever he got a temperature he would have to be admitted to hospital for 48hrs of IV antibiotics, which again meant out family was separated. This happened several times in the first 6 months. The lowest point of it all was the weight loss, he was very thin before this started but the chemo knocked his appetite and he just couldn't eat. In April they decided he needed to have an feeding tube put in which he was so against, but deep down I knew he needed it he was so frail and looked so thin it was worrying.  
 

So we went to UCLH and had to stay in for 48hrs to get the feeds up and running, and learn how to do this ourselves. The next 3 months were the hardest time, having to encourage him to eat in between feeds, and then give his prescribed feeds at regular intervals through the day and evening, it was like a full time caring Job. I didn't realise how hard and time consuming it was juggling feeds, caring for Tommy taking him for his treatment, also caring for our other 2 children too. But though all of this journey Tommy never ever complained once about having to have treatment, and carried on going to school (within a learning mentor room) so others didn't see him. It destroyed his confidence (which he lacked before leukaemia) but not his determination and bravery. He really is an inspirational young man that I know his school friends all admire and his teachers are amazed by. But most of all Andy and I, couldn't be prouder of the young man that he has become. He was born almost 15 years ago our miracle baby, and he is now our hero.



For everyone at Teens Unite for giving Tommy confidence and some amazing opportunities that he has experienced in the last year, his journey would have been a much darker place without you in his life. Tommy still has approximately 2 years of treatment ahead of him, taking daily oral chemo tablets at home, blood test once a week and hospital visits every 6 weeks, but life is slowly getting back to some sort of normality! Although I am never complacent and every day I ask my children if they feel ok, especially Tommy. It has certainly taught us never to take life for granted, and to live laugh and love as you never know what's around the corner! Enjoy life to the full.