An Open Letter

 

Blog post written by teen Jess on her blog https://cancerandjess.wordpress.com/

Dear the non-cancer patients of this world,

There are some things that I need to get off my chest. Before I start I need you to understand that I am in no way trying to undermine the support that I have had from the vast majority of you during this roller coaster journey. Nor am I trying to offend those of you who may feel like you tried to help and support me, but felt as though I didn’t appreciate it, because believe me, the support I had was invaluable. 

What would I tell all of you if I had one chance? I’d tell you that given the opportunity, I’d swap your immune system for mine in a heartbeat. Don’t get me wrong, I’m proud of my body and everything it has been through, but it would be nice if my biggest concern about going out in certain environments was that I could catch a cold or a naff virus that wouldn’t leave me bed-ridden for weeks. 

I’d tell you that once I’m on the other side of this cancer journey and getting better, I can’t be expected to be the same person I was before the bombshell dropped. In many respects I will come out bolder and stronger, but in many others I will be weakened. My body is weak, my mind is in a whole new battle with itself and I’m struggling to re-adapt to society. 

I’d ask you to let me experience real emotions. Even though cancer and its treatments can sometimes influence my outlook, I still have normal moods and feelings in regards to life outside of hospital and cancer. If I’m angry or upset, accept that something made me mad and don’t write it off as the disease. I need to experience and express real emotions and not have them belittled or brushed off. I’d also ask for forgiveness; There will be times when the illness and its treatment make me “not myself.” I may be forgetful, abrupt or hurtful. None of this is deliberate and hurting or upsetting any of you is the last thing I’d ever want to do. Please don’t take it personally, and please forgive me. You need to understand that this doesn’t mean I don’t love, appreciate or cherish you, because believe me, I do.

I’d tell you that you don’t understand. And you never could unless you had gone through it yourself. And I don’t mean this as a bad thing, because I’m so thankful that you don’t, and I always will be.

I would also tell you that I need you to look after my family as much as you look after me. If, God forbid, the worst happens, they’re the ones left behind, and they will need you all more than ever before.

I would ask you all to treasure your loved ones. Life can change in an instant, and far too often in this world, people wait for tragedy to strike to understand what is important. Hug your loved ones tight and make sure they know how much you love them. Treasure every smile that spreads across their face and every laugh that breaks free from their lungs. Those are the moments you can never get back. 

I’d plead with all of you to take nothing for granted, particularly your health. Please make sure you go for regular check-ups and screenings. I appreciate going to the GP is often an uncomfortable experience for many, but it’s much less uncomfortable than having to break bad news to your loved ones.

I’d tell you that I need you to treat me as a person, and not a patient. I appreciate it when you text/ring me and ask me if I want to do something…While I may not always be able to, I like that you thought of me. I need a healthy balance between you talking to me and giving me space, and although it may take a while to find this balance, I trust that we will.

While I cannot be thankful for my cancer in most respects, we need to be grateful for my doctors and treatments for giving me the chance to fight this illness. And if there ever comes a time when the treatments no longer work, I need you all to know that I will always be grateful for having lived my life with you in it. And I hope you feel the same about me.


All our love and more,


The cancer community x

 

What's being cancer-free really like?

Post taken from teen Azreen's blog -  http://missionpossiblefightingcancer.blogspot.co.uk

 

Imagine.


Imagine you’re in a little glass box, around you is everyone you know, from your immediate family, to your best friends, to just people you know from here and there. In your box, they can see you, they can sympathise with you, they can see that you’re stuck, but they’re outside. They can’t touch you, they can’t get you out, they talk to you and help you forget that you’re in the box for a moment. But soon enough they’re walking along moving on with their lives. Anywhere you look, you see people jumping up, wearing mortarboards, holding a rolled up piece of paper in their hands, celebrating an end to their education. You see people you grew up with holding the hand of their significant other as they say their vows, you see the first smiles of their gorgeous new born, you see them go on their first holiday, get their dream job. You see them achieve everything that you thought should be yours.


Now, in no way am I questioning my Qadr and not accepting that what’s happened is for the best.


But I had dreams too.


Had.


“Your scans are clear. You are now in remission” is in no way an escape from the hell that cancer is. It sure as hell isn’t easier. Is it too audacious to say that it’s worse?


Here’s why:


The person at the end of the cancer journey is not the same person at the beginning of the journey. Cancer changes you, you lose friends, you make friends, you learn new things about yourself, you like different things and dislike things you used to love. It becomes insanely harder to make friends and keep conversations going because you no longer know how to. You want to find yourself, but the crippling dizziness, fatigue and nausea has it’s wickedly firm arms wrapped around your already weak body.


At first, being cancer free is a breath of fresh air, the appointments that were once a few times a week have drastically reduced to once every couple of weeks/months. You have time to find a hobby, socialise, all the things you wish you could do but never had time for pre cancer. But the energy for a hobby is soon lost and motivation to get up and go out is hard to find, then you see it. your own reflection staring back at you, the sunken eyes, the shiny head, the pale lips. Your own reflection staring back at you in your little glass box. You realise, now that cancer hasn’t got it’s sharp grip around your frail little wrist, you no longer matter.


You’re better now.


Truth is, you still feel as crap as you did during the treatment, only thing is, back then you had an entire party behind you telling you how brave you are, cheering you on, making you forget. Half the time, you were so drugged up you didn’t realise the extent of your illness. But now? Now you’re awake more, you can do a little bit more than you could and that’s when you actually realise how much you can’t do. It’s when you’re recovering that you realise the extent of the trauma you’ve just faced.


Then the questions begin.


“So, what now?”


“Are you going back to uni?”


“Looking for work?”


“Why do you still feel tired, haven’t you been off treatment for months?”


Then your anxiety kicks in.


Why am I not yet looking for work? Am I behind? Am I just being lazy? But what if I can’t keep up with a job? Where would I even work? Do I still want to be a teacher? Do I even want to be around kids, knowing I can’t have my own?


The anxiety is worse when you mistakenly scroll through Facebook and see it again. The graduations, the weddings, the babies, the jobs, the holidays. It’s too much. Then you find yourself wondering whether you’re a terrible person for not feeling happy for them. Am I? You try to remind yourself that everyone has their own time for everything. Yes, things have slowed down but it isn’t the end. It’s a continuous battle with yourself. You try not to hate yourself for being winded from a quick trip down the road. You have to tell yourself, it’s not your fault. You’re not pathetic.


And let’s not get started on the “what if my cancer came back”


Anytime a tiny little thing goes awry, alarm bells ring in my head. “CANCER. CANCER. CANCER. RELAPSE. RELAPSE. RELAPSE”


Headache? Am I just tired? Nope, my cancers back.


Tingling in my back? It’s cancer.

After cancer, it’s hard not to focus on everything being a relapse.


BUT. Having said all of this, it’s important to understand it isn’t all bad.


Once your strength starts slowly coming back, you find the motivation to do the things you once loved, drawing, dancing, singing – whatever it may be. You start to experience amazing new firsts such as, the first time you comb your hair, the first time you tie it into a little pony, the first time you go out alone and the first time you apply for a job and get a yes! You get some more colour in your cheeks and spring in your step. Your chemo-brain still limits you somewhat but you can remember things better and you find yourself smiling a little more. Yes, you’re stuck in a glass box that’s travelling slower in time, but that’s okay. Cancer isn’t your fault, the position you’re in isn’t your fault. You’re due for bigger and better things Azzy, time will show you so.

Yes, there’s a misconception that remission = cure and cancer free = easy, but it’s not so. There’s always a high risk of relapsing, there are many hurdles and anxieties you have to face and it’s a whole new journey of discovery that you get to take and honestly, it can be pretty magical if you let it.


On a side note, if you do have a friend or family member suffering from cancer, understand that they need as much support after cancer as they did during. Remission doesn’t necessarily mean that the side effects vanish and everything is okay again. Recovery is a long road, help them through it. Life after cancer can be incredibly lonely, try not to leave a friend in the dark. 

20 Inspirational Cancer Quotes for Survivors, Fighters & Caregivers

Blog post taken from https://www.ihadcancer.com

 

"When you're dealing with cancer, a daily dose of inspiration may make a big difference in your outlook on life. Share these inspiring words with a fighter in your life to lift them higher during their cancer journey.

Keeping a positive outlook is proven to help with stress management, but when someone says to "think positive" or "be optimistic" during a time such as cancer, it can be much easier said than done. We know that cancer isn't all rainbow and butterflies and once you enter a dark mind-set, it can be hard to get out of it. But most of us have that one message of hope and inspiration that somehow manages to help bring some perspective and optimism to a situation.

So with the help of our community, we compiled 20 of those messages. If you need some motivation or you know someone who does, please share these words of inspiration with a loved one. 

 1. You beat cancer by how you live, why you live and in the manner in which you live.  

 

One of our favourite cancer quotes from the beloved Stuart Scott. Live your life by your own terms, not cancer's.

2. Remember how far you've come, not just how far you have to go. You may not be where you want to be, but neither are you where you used to be.



It can be easy to get caught up in how far you have to go. Don't forget to look back, and recognize how far you have come. Every day brings you one step closer.

3.You are braver than you believe, stronger than you seem, smarter than you think, and twice as beautiful as you'd ever imagined.



Don't let cancer cause you to sell yourself short or forget your worth.

4. When you have exhausted all possibilities, remember this: You haven't.



Keep searching for what you're looking for. You will find it.

5.Your life is your story. Write well. Edit Often.



You can't control what happens to you, but you can control the way that you handle it. What do you want your story to say?

6.Be thankful for this day.



You are here, breathing and living life. Even if it's not the life you want or hoped for, it's life. There's always something to be thankful for.

7.Small steps every day.



Every small step counts. You might not reach your goal today but that is okay. 

 8. Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you.

Everyone has scars - whether you can see them or not. Wear yours with pride.

9. When it rains, look for rainbows When it's dark, look for stars.



It may be hard to find your silver lining during a cancer diagnosis, but its' there. If you look for it, you will find it. 

  10. Optimism: someone who figures that taking a step backward after taking a step forward is not a disaster; it's more like a cha-cha.

You may not be where you want to be right now, but you're just doing the dance that is called life..

11. Never give up. Never give in.



Never, ever, ever give up.

12. I have loved the stars too fondly to be fearful of the night.



If you loved your life before cancer, do not be afraid of life after cancer. You will find beauty again.

13. Surround yourself with only people who are going to lift you higher.



There is no time for negative energy during cancer .You need to be around people who inspire, challenge and make you better.

14. Good thoughts only.



The bad thoughts will try and sneak in, but don't let them. Focus only on the good thoughts.

15. Don't look back. You're not going that way.



Don't waste time worrying about the things that you cannot control; such as the past. Keep moving forward.

16. I can and I will.



There's no other option. Tell yourself this affirmation every day - through treatments, doctors visits, and whatever else comes your way.

17.I had cancer, cancer never had me.



You are not defined by what you are going through. Cancer will never have you. You are much more than your disease.

18. Cancer is a word, not a sentence.



Cancer is NOT a death sentence. It's just one word in your sentence; one part of your life.

19. Broken crayons still colour.



Nobody's perfect. If you feel broken, don't let that determine your worth. You can still do so much.

20. It is often in the darkest skies that we see the brightest stars.



Try and find some beauty in your situation. You won't be the person you were before cancer, but that does not have to be a bad thing."

Teens Harry and Eilish take on the Sri Lanka Cycle Challenge!

 Two of the amazing Teens that we support, Eilish and Harry are currently in Sri Lanka taking on the incredible cycling challenge. Over the next week they will cycle a staggering 350km, an average distance of 60km per day through a land of misty highlands and tea plantations, dense jungles and national parks. We are very proud of them both and hope they are enjoying the whole experience.



On the departure morning Eilish has this to say…

“Quite scary how quickly this has come around but here goes, months of training and incredible amounts of motivation from my wonderful family and friends, I'm off to cycle 350km around Sri Lanka massive thank you to everyone who's sponsored me, I have raised a huge £2790! You have no idea how grateful I am and how much Teens Unite means to me. Thinking of my amazing friends I've met through Teens unite, those still fighting, the survivors and those sadly taken from us. Without teens unite I would never have been able to form these friendships that mean the world to me ”

Eilish has raised an incredible amount for Teens Unite, however there is still time to show her your support and donate to her JustGiving page here - https://www.justgiving.com/Eilish-Dowd1

 

After day 1 of the cycle challenge Harry sent us this update…

“The cycle was amazing. On our way to pick up our bikes this morning you see all these different, weird types of vehicles, including bikes, and you wonder how they haven't been run over yet. Luckily you kinda forget that when you're in the same position as them

The cycle wasn't as bad as what I thought it was going to be. So glad I put the training in for this though or I r...eally would have struggled. It was 38 degrees at one point but didn't feel like it at all. The whole cycle went quite quick to be honest which was obviously ideal!

As soon as we finished cycling we had to climb a very steep mountain which had around 1,200 steps. Not really what you wanna be doing after a 60km cycle but the views were unreal. 
 

So it was back to this amazing hotel where I had a lovely evening swim, followed by a buffet (seems to be a 'thing' in Sri Lanka) and a couple of games of chess which gave me a massive headache haha.

Anyway, straight to bed now as have to be up at 6 to leave at 7:30! It's hard but, wow, what an amazing experience.”

 Harry is SO close to hitting his fundraising target, please donate if you can to show your support. https://www.justgiving.com/fundraising/HarryLehane2
 
We are so amazed by all of the incredible supporters who are taking on this challenge. Keep going guys, you are doing us all so proud.

To be filled in with the day to day cycle challenge action then click the link below to follow our Sri Lanka blog.
http://teensunite-srilanka.blogspot.co.uk/

Do You Know The Symptoms?

 

This post is from teen Emma's inspirational blog http://emmalouisedunn.blogspot.co.uk/

 

"The title of this post is self explanatory and it may not appeal to you in any way but if you don't know or are unaware of some/all the symptoms of cancer then I urge you to read on.

 

I have teamed up with CATS to create this post highlighting the main symptoms of cancer... CATS is dedicated to promoting awareness and early diagnosis of cancers in young people. Whether it's events, fundraisers or talks they're here so that teenagers and young people know what signs to look for and when to go and get themselves checked, potentially saving lives. I'll leave their links below, please check them out! 

 

Twitter: https://twitter.com/TheCATScampaign

Facebook: https://facebook.com/CATSmanchester

 

 

 

 

The chances of getting cancer at a young age are considered slim, but it happened to me and I was just your normal healthy eleven year old, so how slim must the chances be? If cancer in young people is considered uncommon then why is it the second leading cause of death in children? Before I was diagnosed, I had no clue what the symptoms for cancer were because like every other person, why should I know? You don't ever think that it is going to happen to you and lets be honest, at eleven years old I was blissfully unaware of what cancer was and until I was diagnosed, even my family members and many other people around me were totally unaware of childhood cancer.

 

I have decided to write a list of the symptoms that I have personally experienced, symptoms my friends have experienced and also researched symptoms that other people may experience - the more knowledge the better and with the help of CATS, who have kindly emailed over some of these super cool awareness posters I hope that these help raise awareness and may help you spot they key signs...

 

 

Becoming more breathless than usual - (I shamefully hold my hands up to this, although I do now have the equivalent to maybe just over half, maybe 3/4 of a lung that's cancer free) but this isn't any ordinary breathlessness like walking up a flight of stairs etc that should cause any concern... by breathlessness, I'm talking about walking down the road for a minute then having to stop and sit down because it feels as though you've been walking forever and like your whole body is about to collapse, or getting extremely breathless even trying to hold a conversation with someone for longer than a minute or so... Not being able to stand up in the shower for longer than 5 minutes without feeling exhausted or lightheaded. These are just a few of the symptoms that I experienced and at first I put it down to laziness, I don't exercise and due to my other illnesses I don't tend to leave the house very much, but I soon realised these symptoms weren't normal.

  Easily bruising on the skin - I personally didn't experience this symptom, but many people with cancers such as leukaemia do. My best friend did, in fact I remember her telling me a story about her being her usual clumsy self and walking into a door handle and she didn't think anything of it at the time, but later that evening when she got ready for bed the bruise that had appeared on her skin was that of one that would usually appear after an incident similar to being kicked by a horse or something of that severity!

Extreme tiredness - This one ties in well with breathlessness and was amongst one of the side effects that I had experienced with my lung metastasis. I'm pretty sure everyone feels tired, especially around their teenage years. I'd be up all night tossing and turning, and still be getting up early for education/work but extreme tiredness is a whole new level. I would wake up for college at around 8am and afterwards go straight back home at around 3pm for a three/four hour sleep roughly waking up between 6:30 and 7:30pm. It felt like I was hardly getting any sleep at all, when the truth was, I was getting in any extra hours I could...

Changes to moles - It is always important to check moles in the sense of size, colour and if they start to itch, feel hard or lumpy or the skin becomes to feel dry or scaly, the mole changes in shape, or starts to ooze or bleed then it's best to get checked out.

Lumps, bumps and swellings - This symptom was amongst the first that I experienced, my right femur was swollen and it was very visible too. It is always extremely important to check your body every couple of weeks, if there are any signs of lumps, bumps or swellings then it is a lot safer to go and get it checked out, just to be sure.

Bleeding - This isn't a comfortable situation for anyone to talk about but it is extremely important... if you find blood in your urine or poo (sorry to be so gruesome, but honesty is the best policy) then please make sure to get it checked out!

Constant headaches and dizziness - Our generation spend the majority of our times on technology, whether it be a computer whilst we are at education or work, to checking our phones every two minutes to see if we have any new notifications - I hold my hand up to this, I am totally guilty! But if constant headaches and migraines are affecting the way you live your daily life, then it is ideal to get them checked out, it could mean that you need glasses, but it's always better to get checked out.

Sudden weight loss - Small weight changes over time are quite normal, but if you lose a noticeable amount of weight without trying to, always seek advice. I remember losing almost half a stone in just a few weeks before being re-diagnosed with cancer in my lungs and I'm not gonna lie, it felt absolutely amazing... Until I realised that it was a symptom of cancer. 

Night sweats - This was a symptom that I only actually realised I suffered with recently, I didn't think anything of it at the time of my diagnosis because my bedroom was in the loft and summer was fast approaching but I would wake up several times in the night absolutely soaking with sweat - ew! This is actually really common, and could be nothing but if you are experiencing this, get it checked out!

Unexplainable pain - This can be an usual pain that occurs out of nowhere and doesn't seem to ease with painkillers that are taken. Amongst swelling this was another major symptom that I experienced, the pain that I endured was mainly during the night and felt like severe growing pains... As I was only eleven at diagnosis, I was fobbed off by hospitals, and doctors for months who refused to take me or my mum seriously.  Painkillers did nothing for this pain and eventually it prevented me from being able to walk properly, and once I was diagnosed my consultant warned my mum that if I hadn't been to the hospital that day and carried on weight baring for a few days longer that my leg would've snapped as the tumour had grown out of my bone and was also eating away at the muscle and surrounding tissues! (TMI and super gross, I know but this is why posts like these are super important, it could save a limb.. or a life)

 

There you have the top symptoms of cancer, this post was in no way made to try and freak you out.. suffering from one or more of these symptoms does NOT automatically means that you've got the "dreaded C" I just want to raise awareness and inform people of the most common symptoms as it is always good to be well aware and after all, we know our bodies better than any doctors... If you feel like something isn't right then please don't refer to Dr. Google but instead book in with your local GP and have a chat. If you have read up until this stage of the post, then thank you, thank you, thank you and I can only hope that by reading this that you have learnt something new to take away with you. Before you go, I'd love it if you could leave a comment - if you're a fellow blogger then drop me your link below and I'll be sure to check you out.

 

 

It'd mean the absolute world to both me and the amazing people at @TheCATSCampaign if you could share this post on any of your favourite social media sites and help raise awareness of the top 10 cancer symptoms and also highlight that cancer affects children and young people too! If you would like to get involved, you can share the pictures included in this post, or contact CATS personally where they will be more than happy to email over some of their amazing work so that you can help raise awareness!

 

Happy Friday my lovelies, I hope you all have a lovely weekend whatever you have planned! I think I'm going to spend the weekend catching up on some much needed rest after so many sleepless nights on steroids and hopefully see my little brother and sister...

What do you have planned?"

All about chemotherapy...

Blog post written by teen Amy, from her blog http://fromfightertosurvivor.blogspot.co.uk/

 

"I was thinking that some of you may not actually know what happens when you go to receive the infusion of chemotherapy or what its like, so I thought I would hopefully shed a little light!

 

The room itself is basically a massive room split into 3 sections with a little side room. The rooms are filled with snazzy green armchairs each with a pump next to the chair. The sections are called bays, and 2 or 3 nurses are in charge of the 6 or so patients in that bay. The little side room has a TV in it and a bed like they have at the doctors surgery.

 

On the day you sign it at reception and go down to Room 10 (chemo room)the nurses tell you which bay you're in and then you wait, sometimes for 10 minutes sometimes for 5 hours! The room has volunteers who make tea and coffee, lunches and even massages so there is ways to pass the time while you're waiting.

 

The chemo its self is given through a vein, so will either use a line, post or a cannula. They always run a bag of saline along with the chemo too. Depending on the chemo you have will depend on pre meds. For the ABVD I had bags on anti sickness before the chemo could start and the same with the ICE, for this current chemo they literally go straight for the drug, there is no pre meds.

 

The timing chemo takes depends again on the chemo you receive, ABVD took around 5 hours and was done as an outpatient in the chemo room, ICE was give over 5 days as an inpatient on the ward, and Brent is given over 30 minutes as an outpatient.

 

The nurses are fab and check on you every 5 minutes and do their best to stop any side effect or anxiety and make you as comfy as possible for the duration of time you're there.

 

After the infusion, you more than often have to wait for pharmacy to give you the meds to take at home after chemo, and book yourself in for bloods, clinics and the next round of chemo!

 

It isn't a particularly nice thing to have to do but as chemo goes on you really do get used to it and becomes part of your new life!"

Teens Unite Activity Stay

 

 

We are still reminiscing about our incredible Teens Unite Activity Stay which took place at Mill Hill school in August.

 

Watch the amazing video below, captured by Lawrence Essex to catch up on the highlights...

 

 

We were so overwhelmed with the wonderful feedback which we received from so many of the young people who attended. In case you missed it or you are you are interested in attending next year's stay, but would like to hear a bit more about it first. Then take a read of some of the inspirational messages below...