My illness is invisible, but your ignorance is not

Blog post by Jess Terry, a young person supported by Teens Unite - https://cancerandjess.wordpress.com/    

"I’d like to start off this post by saying that I think I’ve realised why my blogging and writing has become more and more sporadic. I used to think that this was because I didn’t need to use it as a crutch as much, but now I realise that it’s actually the complete opposite. I write when I’m okay, and pull myself away from it when I am not. Maybe this is because I find happiness in writing, and when I’m far from okay, I don’t feel like I deserve to be around things that make me happy. I hide myself away from the world and distance myself from the people I love. I do it consciously, and that is horribly selfish of me, but it’s how I cope when I’m not coping. It might not make sense to you, but it doesn’t have to. It’s how I get myself through the day without falling over the edge, so I can’t be apologetic for that. Mental health is a problem I still suffer with a lot, I don’t know if I’ll ever get an escape from it, so for now I’m just ‘living’ with it. So please continue to be understanding of my slightly messed up head, and know I’m grateful for all of you.

That actually ties into quite nicely to what I want to discuss in this blogpost. Mental health is an invisible illness, and often, so are a lot of physical illnesses. To the average person, you look fine. No-one would know that you’re any different to everyone else, when in reality that isn’t the case.

When I was on treatment in 2012, it would not have taken a genius to work out what was wrong with me. I was overweight, bald and reliant on crutches. I looked like a typical cancer patient:

It was not a secret that I was seriously ill. My physical appearance left it almost impossible for it to be kept as a secret. I looked, and was, very unwell.

While my cancer is now ‘in remission’, and not growing, I am still unwell. I have been left with damaging and life changing side effects. My body is severely weakened, so I am essentially really unfit. I have tried to change this by going to the gym and stuff, but this just made other side effects flare up. So I live in an unfit, unchangeable body that I don’t want. Physio has helped slightly, and it may continue to get better, but there are no guarantees. I remain optimistic for a release.

I also have chronic pain in my joints, meaning often my hips or knees suddenly get severely painful and there’s not much I can do to change that. I just live with it. This is a life changing problem. It has meant in a lot of respects that my partner has become my carer as well as my boyfriend. If I’m in pain, or exhausted, he will have to wash my hair for me, and sometimes lift me out the bath. It has been so painful before that he has had to help me stand up off the toilet. (Sorry for sharing that embarrassing moment with the world, Jordan). I’d be lying if I said this hasn’t been a strain on our relationship. But to the outside world, we’re a happy young couple enjoying our lives and very much in love.

It’s also because of this that I can’t stand up on the bus, because the movement of the bus causes too much strain on my joints. And I hate that I was once confronted on a busy bus because I was physically unable to stand up and give my seat to someone older than me. When I eventually got off the bus at my stop, I left in tears because I felt so humiliated about being called a ‘drama queen’ and a ‘lazy teenager’ by a stranger on the bus.

Fatigue is also a massive hurdle I’ve had to overcome. It doesn’t mean I get a ‘bit tired’ sometimes. It means I, near enough, always feel exhausted and drained and weak, and no amount of rest or sleep will change that. It’s shit. I know it’s shit, but I’d rather live with this and be alive than the alternative.

I cannot begin to tell you the amount of people who have found out all of this, or even some of this and have responded with “But you don’t look sick!”.

But to the outside world? I don’t look ‘ill’ or ‘abnormal’. I look like this:

A pretty happy teenager right? Which is exactly what I am a lot of the time. But this is me on a good day. Actually, if i remember correctly, this was me on a good afternoon after a pretty bad morning. Today has been a half-bad day, and today, I look like this:

Even this picture does not give justice to how bad I look on my worst days. I am a shell. Unrecognisable. I am bad company. But that’s because I’ve been like this for 4 years, and I’m fed up of it. I want to be ‘normal’, whatever that is. But I’m not, and I hate it.

For years after my treatment I had a Blue Badge (a disabled parking badge), and while I was never confronted over my need for it, I was subject to disapproving looks from passers by. Many of my friends have experienced similar ignorance from the general public. I know people who have been confronted over their need for a disabled badge. This is the 21st century for goodness sake, surely there are bigger issues in the world that whether a person ‘looks’ disabled enough to park in a particular place?! Seriously, have you nothing better to do???

They say that ignorance is bliss. I say that ignorance is fucking dumb. Either educate yourselves on the true meaning of disability, or keep your mouth shut. It’s really not that difficult.

My illness may be invisible, but your ignorance is not, and the world can see your true colours. I can’t help being unwell, and having a disability, but you can help being judgmental and ignorant to a complete strangers. Walk a day in my shoes, and then see if you have the same outlook. I dare you.

So in this blogpost, I’ve touched on relationships, the life-changing side effects of cancer, and ‘invisible illnesses’. If I’m going to give any advice with this piece, it’d be please, just think before you speak. Just because you can’t see it, doesn’t mean it isn’t there."

What if...

 

Blog post from Emma, a young person battling cancer - http://emmalouisedunn.com/

 

Do you ever sit and think about the  what ifs in your life? Not simple, little what if I've left my straighteners on but what if something major in my life didn't happen? Sometimes, when I'm lay in bed at night my mind wanders and I start to think a lot about the what ifs and I can't even begin to imagine how different my life may be.

What if 6 years ago, I wasn't diagnosed with cancer, but instead something minor like a pulled muscle? The doctors originally thought it may have a been a pulled muscle or growing pains. Sometimes I sit and think that my life would be a million times better if I never had cancer...

I'd have been the brightest one in the class at school - I've always loved learning things and I didn't have one subject I disliked. I'd have left school with more than 1 GCSE A*-C, I'd have taken A-Levels at college instead of BTEC's and I'd be applying for universities 3 hours away from my hometown to study for my dream career.

I'd have years worth of drunken memories sitting in the park drinking cheap cider and kissing boys, I didn't know the names of... Years worth of school reports, detentions and more. I'd have tried a cigarette or two behind the bike shelters in school and doused myself in perfume before returning to class so nobody suspected a thing...

I would have had several meaningless boyfriends, countless awful first dates and I don't want to imagine the amount of Angus, thongs and perfect snogging sloppy kissing situations...

I'd still be friends with the girls I went into high school with, I'd have had endless screaming cat fights with other girls over them talking to my latest boyfriend. I'd have best friends who hadn't been through cancer and almost died whilst fighting for their life, but instead their closest near death experience would be drinking too much vodka and thinking they were dying with their head stuck in the toilet.

I probably would have moved out by now... Just about surviving on a basic wage and super noodles or beans on toast for tea every evening.

If I didn't have cancer my biological dad wouldn't have done what he did and cause my parents to break up, we'd probably still be a family, and we'd still have a bearded dragon named Chug.

If I didn't have cancer than I probably wouldn't have a strong relationship with my mum, I'd be out every weekend. She'd be out working everyday, we'd probably be passing ships.

My life would be different in a million and one ways if I didn't have cancer,  that's just a few reasons of how it would be but although it is a serious, life threatening disease it's a blessing in disguise for me...

Yes, having cancer triggered my ill mental health, and as a result of having cancer I've now got two metal legs, four missing ribs and several chunks of my lungs missing, but with cancer I have an amazing life that I wouldn't change for the world and my life couldn't be better...

I'm grateful for cancer because

I left school with one GCSE A*-C, I'd missed 3 and a half years of schooling and I was so damn proud of myself for being able to sit my exams and all that matters to me and my family is that I tried my best.

My mum has met the man I now call my dad and I now have two younger siblings who mean the absolute world to me and I've been shown what a real dad is and how a real dad acts. He books days off work to come to hospital appointments and operations with me. If he can, he'll always come to visit me whilst I have my chemotherapy. He loves me like a father loves a daughter and I love him like a daughter loves a dad, because that's what we are to each other. "I don't have a step-daughter, I have a daughter who happened to be born before I met her" is a text that he sent me a few weeks ago, and nothing has been more true...

If I didn't have cancer I never would have met the man I call my husband today, and the thought of that terrifies me... My first boyfriend, the first boy I held hands with, hugged, kissed is now my husband and I have cancer to thank for that because without that diagnosis I'd still be kissing ugly frogs trying to find my prince.

My mum, although the first few years of me having cancer and being a hormonal teenager was extremely hard for her, I resented her for my biological dad leaving before I understood the reasons why and I took the fact I had cancer and was different out on her as she was the person closest to me. Despite all of this, she did everything for me. She dressed me, bathed me, helped me on and off the toilet, all while I shouted at her and took all of my feelings out on her - I mean it, I threw crutches, tried to escape from the ward in my wheelchair😂! Now our relationship is stronger than ever, not only is she my mum but she's my best friend. I can talk to her about anything and everything, I love and appreciate her for absolutely everything she does for me. Sometimes I'd rather sit on the sofa and watch the soaps with her than see my friends.

If there's one life lesson I've learnt from this, it's that good things come from bad situations. Sometimes you just have to be patient, and sometimes it takes sitting down and letting your mind wander to realise what they are... If I had the chance to live a life without cancer, I'd say no. Cancer has brought the people who are in my life today, and gotten rid of the ones who didn't mean anything to me. My life couldn't be any better, cancer included.

Now when I lay in bed I won't think what if, instead I'll think about all the good things that have come from a bad situation...

I hope you've enjoyed this blog post, it's something that I've thought about doing for a while and I'm finally confident enough to post it.

Happy Monday, lovelies.

‘Chemobrain’ – dealing with cognitive problems after cancer treatment

Post copied from https://www.anthonynolan.org. Written by Billie Dunlevy.

 

"‘Chemobrain’ – the unofficial nickname given to cognitive or memory problems that can occur after chemotherapy – is something that we know affects bone marrow transplant recipients.

Billie in the patient team spoke to three people to learn how they manage living with symptoms and how they’ve needed to adapt their lives post-transplant.

Ceinwen’s story

 

Ceinwen, 26, had her transplant when she was 20 to treat aplastic anaemia.

 

Can you tell me about your experience of chemobrain?

 

It’s a bit like brain fog, and it goes alongside my fatigue. I often can’t think of the right words, and it’s really hard to reach for the words I want to use. Sometimes I forget words completely.

I got really frustrated over the word ‘salt’ because I’d always forget it and I had to have high salt intake in my diet. I’d be sat at the dinner table, saying, ‘Can you pass me the…um…um…?’ and the word wouldn’t come out.

I also struggle with my memory quite a lot. I can’t put things together properly in my brain. Before treatment, I had a brilliant memory. If I put something down, I’d be able to visualise exactly where it was. Now I have no idea. On a good day, I can kind of get a sense of where things are, but on a bad day I am constantly losing my phone!

 

Did you ever see an occupational therapist or a psychotherapist to talk about the effect of these symptoms?

 

I suppressed a lot of memory around the point of diagnosis, and I had to have a lot of therapy after transplant when I started to remember what had happened.

That was really hard. I guess it was my body’s way of coping with trauma and stress. I’ve also done quite a bit of CBT (cognitive behavioural therapy) which is really helpful to stop me getting worked up about the small things, like me being forgetful and getting frustrated.

I now recognise, ‘Oh, that’s because of this.’ I can’t change it, so I am going to change the way I think about it. It does help me a lot in dealing with that loss of memory and loss of brain function.

 

I know you don’t currently work, due to your post-transplant complications, but you do volunteer. Could you tell me about that?

 

I’m still unfit for work, sadly, so I volunteer a lot. I used to say I was a serial bum but now I spend a lot of my time volunteering!

I work quite a lot with CLIC Sargent, on their young people’s reference group. I also did an internship there earlier this year.

I also volunteer one day a week with a clothing range called Fix Up Look Sharp ,who upcycle clothes. I spend my time sorting through fabrics, cutting patterns and just helping out with whatever they want.

I sometimes do too much; last week I went to London three times and I’ve paid for it this week! But when you have a good day and the chemobrain isn’t there, you forget you have it. It can be very frustrating.

 

How do you manage your chemobrain? What are your tips for dealing with it day to day?

 

I use one note. That’s really useful for creating to-do lists and planning. We’ve got a big calendar up in our front room which has got everyone’s week on it, so I plan around that.

There’s a lot of planning around fatigue and chemobrain. Initially, I thought it wasn’t going to last this long. It’s got way, way better over time, but six years on, I still suffer with it.

I find that walking is a big help. I try to walk as much as I can, because it helps clear my head and gives me something nice to look forward to. I used to be good with directions, but when I got ill and the chemobrain set in, I couldn’t tell you how to get across town. I was always the person people asked for directions, too.

Because I’m going out and about lots now, all of the roads and directions are starting to reconnect in my brain. I’ve found that chemobrain does get better over time – not in all aspects, but in some, and that’s enough.

Rachel’s story

 

Rachel, 37, had two bone marrow transplants in 2012 to treat her aplastic anaemia.

 

Can you tell me a bit about your experience of chemobrain?

 

I found that it was worse when I was having the treatment, but short-term memory loss is something I struggle with even now. I used to have a really good memory!

Sometimes my speech gets confused in my head. I say something, and then I hear myself and the words are something completely different to what I intended – which is weird. Sometimes it’s similar-sounding words, but not what I want to say, I think it makes me sound a bit stupid, and I’m not!

It’s difficult to distinguish from fatigue sometimes, too. I’m three-and-a-half years post-transplant and I had two transplants, so there were two lots of chemo.

 

How did it affect returning to work?

 

I work part-time, three days a week. I don’t think I could do full-time now, as I need those two other days to recover and nap. ( I am a teacher so I have thrown myself into a cesspit of germs there! I am constantly picking up infections.)

With regard to chemobrain effects, luckily I am quite rigorous with planning, so I do always have stuff written down if I do lose my train of thought. Before my treatment, I wouldn’t have been so strict with lesson plans, but there have been times in the classroom when I’ve completely lost my place, or said the wrong things. And I think, ‘No, that’s going to confuse the kids,’ so I take a minute or two to get back into focus.

 

Do you have any useful tips for managing chemobrain?

 

In the past, children’s names, meetings and appointments wouldn’t have been a problem to remember. But now I need to diarise everything. So I write everything down, and I find that helps me – I forget to reply to text messages, otherwise! I make lots of lists and I have a wall calendar and my diary that I use to manage life.

I also run, which helps me with loads of my side effects, including fatigue and joint pain, and definitely helps with my focus and brain function. So exercise is something I would recommend to other patients.

Ashling’s story

Ashling, 29, had her transplant when she was 25 to treat acute myeloid leukaemia.

 

 

Can you tell me about your experience of chemobrain?

 

It’s difficult to determine at times whether I’m just being a dummy, or whether it’s the effect of the chemobrain! When I first came out of hospital, I couldn’t concentrate on anything. The idea of going back to work was quite frightening for me.

Before I was sick, I loved to read, and people bought me books while I was in hospital. But I just couldn’t fathom the idea of reading a book, even reading a page. My concentration span was just gone.

 

How did it affect returning to work?

 

I had a phased return to work, starting with four hours, three days a week. I’m sure that sounds like nothing to people who haven’t been through all of this, but it was so hard. I cannot emphasise enough how difficult it was.

I was so burnt out after the four hours. I felt like I was failing at everything, because I could remember how well I handled my job before I got sick, but I’d come out of hospital feeling so different. Even the most basic of tasks would exhaust me, and that would then affect me physically, too.

 

Did you find that it went hand in hand with fatigue?

 

I think so, I think the mental strain can make the fatigue worse and maybe vice versa.

 

Do you have any useful tips for managing the effects?

 

What I find really helpful, in terms of concentration, is post-it notes. I live by them! So any tasks I have to do, I write down. I also always have a notebook by my side, my sidekick, for writing down thoughts as and when they come along.

On the computer at work, I use diary invites to prompt me. In my personal life I use a diary for social stuff, and I also use my alarm system on my phone to remind me of things. I don’t forget to feed my cat Tripod, because she hassles me if I do!

Another tip that I find helpful at work is taking 30 minutes at the end of each day to think about things and reflect on what I’ve done – looking back on the day. Just taking more time to think, I guess, allowing that space.

Also coffee – a hundred and fifty percent! It gets me through the day.

 

Thoughts from our Patient Experience Nurse Hayley:

 

Chemobrain can sometimes be dismissed as a bit of a myth, and not taken as seriously as it should be. I think what Ceirwen, Rachel and Ashling have all discussed really highlights that it is a very real side effect of transplant that can last for many years afterwards.

The goal post-transplant is to get back to a ‘normal’ life, whatever that might mean for each individual. I think this shows that chemobrain can really hinder that, and requires a lot of consideration when planning everyday activities.

 

It’s really interesting that there a lot of similarities in all three experiences. Each of them has had to adapt their working life, for example. Supporting our patients in doing this is essential, speaking to employers or HR departments to help them understand what to expect when they return to work, and what they can do assist them in that process. And with patients like Ceirwen, who cannot return to work yet, it’s vital to be able to talk through their options.

 

There is a connection with chemobrain and physical fatigue that we see in patients, and this is really important to acknowledge as well. I think when we talk about fatigue, the focus tends to be on physical symptoms, but as these women have shown, mental fatigue also exists – and should be discussed with the same emphasis. We know from research that exercise or any kind of physical activity reduces fatigue post-transplant, and this has been confirmed in all in talking to these patients, as they use it to help manage their symptoms.

For anyone who’s experiencing chemobrain, adopting the same approach will be beneficial, along with their other tips such as using diaries, making lists and generally thinking ahead – although that in itself must be very tiring.

 

I really like how Ashling takes some time out at the end of the day to reflect, process and have some space; I think that’s great advice for anyone.

 

I hope that if anyone reads these stories and identifies with the symptoms mentioned, it can reassure them that this is normal, it’s real – and there are ways that you can manage the symptoms and have a good quality of life.

 

It is essential to tell someone if you are struggling. If you let others know how you feel, you can begin to get the help you need.  Share what you’re thinking – find someone you can talk to. It could be a friend, or someone trained to listen; like your GP, specialist nurse, transplant team, psycho-oncology team or a counsellor.

 

It can help…

• To keep lists and use a planner for events and day-to-day activities
• To manage fatigue as best as you can
• To eat a healthy diet and try to include exercise and gentle movement in your everyday life
• To give yourself more space and time to think when completing tasks"

Teen Ciara shares her inspirational story...

"In June 2015, I was a 19 year old student enjoying the long university summer break and preparing to return for my second year of Speech and Language Therapy in September. My first year had been a mix of being tired from some late nights and lots of early morning lectures, making amazing friends, taking months to recover from the dreaded Fresher’s Flu and generally enjoying the independence moving away from home offers. This will probably sound pretty familiar to many students, however in my case something was quite different: I had cancer, we just didn’t know it yet.

 

Right near the beginning of my first term in October 2014, I became a regular at the local doctors with varying symptoms from exhaustion to anaemia, from strange lumps appearing to constantly zoning out in everyday life. At first, I got referred for an Epilepsy assessment which thankfully proved to be negative. When that possibility was eliminated, I was told simply to sleep more and to "lay off the takeaways". I’ve always found this advice fairly odd because I normally went to bed at a decent time and as an impoverished student, a vegetable pasta bake and increasingly more creative ways to use smart price baked beans were far more within my price range than a Dominos.

 

As the year went on, I knew within myself something was definitely wrong and kept pestering the doctors to tell them so. I’d gone from someone who had always had endless energy and lots of bounce, to a sloth that had a full night sleep and still needed up to 6 naps in the day; from enjoying and relishing learning this exciting new area of study to having to revise in 5 minute blocks between naps.

Whilst on a family holiday to Cornwall in the July of 2015, another 2 lumps developed but much larger than before, which set alarm bells ringing. When I showed these lumps to my GP in my home town, I got a speedy referral to a Haematologist (blood doctor, I’d never heard of one before either!). In the 2 weeks between the GP and the consultant’s appointment, the lumps had shrunk significantly and I actually considered cancelling the appointment altogether, but thankfully Mum persuaded me to go and it’s a good job she did. After numerous scans, pokes and prods from needles which were quickly becoming my enemy and the removal of a lymph node for testing (my code for armpit surgery), I was diagnosed in August 2015 with Stage 4 Hodgkin’s Lymphoma.

As strange as it sounds, I was actually relieved to have a diagnosis as it meant that somebody believed me and that it wasn’t all in my head. I knew that my chances of surviving this were relatively high and now had something to aim for: remission. Something that weighed far heavier than the diagnosis was how friends and family would take the news, especially so soon after the passing of one beloved Grandad the previous year and my other Grandad before I was born, both from cancer. Obviously no-one particularly enjoyed the news, but I’ve been blessed with an incredible family, a loving boyfriend and wonderfully supportive friends who all pulled together to make the weeks and months that followed bearable, even enjoyable for the most part. The person to take the whole situation the hardest was definitely my Mum, the poor woman barely stopped crying for months on end. Speaking to other teenagers with cancer, it seems that this is not uncommon, that the parents and the close relatives have a much harder time dealing with the situation than the teenager themselves.

 

My lovely consultant decided on my regime to begin the following week: I was to have 6 rounds (12 sessions) of the chemotherapy drug AVBD on a bi-weekly basis as a day patient starting on the 3^rd September 2015, with a possibility of radiotherapy to follow. Following advice from him and my University tutor, I reluctantly deferred my second year and moved back in with my parents. Still being classed as a teenager, I was offered a place on a Teenage Cancer Trust ward in Birmingham, which is around 45 minutes from my home. We got the opportunity to look around this lovely ward and spacious day patent suite, however travelling the journey even before starting treatment was exhausting, in addition to the possibility of hours of delays depending on the notorious traffic of the M6, I decided to receive my chemotherapy at my local hospital. This meant we could travel from the ward to my living room in about 15 minutes, a far better option when you’re feeling really quite rough. The ward was much more cramped meaning there wasn’t always room for Mum to sit with me and I was usually the youngest by about 45 years, but the nurses were incredible and I always had a nice chat with those around me in the 8 or so hours a session. It was only when I got more involved with teenage cancer charities that I was able to speak to people closer to my age with much more relatable situations.

Although I have patches in my memory of this time due to "chemo brain", by about the third session, I do remember we’d gotten into a routine and life somehow began to feel a new kind of normal. We knew for 4 or so days after the treatment, it would feel like a deadly hangover. Even trying to turn the lights on and get out of bed for a shower felt like a horrible mistake and we accepted this quite early on. The only option was to drink lots of water, smell like an old bin, eat whatever food doesn’t taste like metal that day and listen to a Harry Potter Audiobook read by the wonderful Stephen Fry. One thing that helped me through was doing interesting but energy conserving activities on what we called "good days". These were the other 9 days when I was a mostly functioning yet tired and balding human. Taking up new hobbies like sugar crafting to decorate cakes was in, exercise and standing up for any period of time were out. The thought of being able to see my friends and family also kept me going, even as I got progressively more exhausted throughout the treatment, I knew they’d go to great lengths to cheer me up no matter what. Luckily, Mum was able to have time off work to look after me during the majority of my treatments, without her I wouldn’t have eaten, taken any medicines or showered for even longer periods of time.

One of the hardest aspects of the whole ordeal for me was my fear of needles. I’d previously been nervous around needles, manifesting in hysterical laughter and the occasional faint. Prolonged and repeated attempts to draw blood during tests from my tiny, hard to find "toddler" veins left me petrified. During a 2 week cycle for my chemotherapy, I had to have bloods taken once, a cannula to deliver the treatment and 5 home injections to boost bone marrow production to be given by either myself or my Mum, whoever was feeling most brave that day. "You’ll soon get used to the needles" I was constantly told by medical professions and loved ones alike, despite my insistence the phobia was getting worse, "You should see them as your friend for saving your life". I knew these were intended as reassuring words and what they were saying was true, but with a panic attack before each needle and tears to follow after, I found it difficult to keep a pleasant smile as I would joke off the comments, admittedly through gritted teeth!

Another struggle was that despite the best efforts of your loved ones, unfortunately cancer can be such a lonely place. On the one hand, you’re glad almost everyone you know hasn’t experienced the disease themselves so can’t empathise, but there are only so many looks of pity a person can take before you wish someone could just understand. Part way through my treatment when I felt more settled, I took up the offer of the chance to meet and make friends with inspiring people who could actually appreciate what I’ve been through, having gone through a diagnosis of cancer themselves. I’ve been lucky enough to be supported by a range charities that help teenagers with cancer, from home visits of a lovely social worker to amazing trips, from a real hair wig from the Little Princess Trust to financial help, I’ve had amazing once in a lifetime opportunities I would never have had otherwise and much more.

I received my final dose of chemotherapy on the 11^th of February 2016 and had a scan roughly 6 weeks later. On the 1^st of April 2016, we received amazing news: my scan showed no signs of cancer, so radiotherapy was not required. The relief was unreal, we had to check it wasn’t an April Fool’s Day prank. It’s currently just under 6 months since my final treatment. I’m spending even more time doing things I love with people I love and excitedly preparing to return to university this September. I’m looking forward to the upcoming Activity Stay hosted by Teens Unite, visiting friends abroad and resuming my life again. Without wanting to sound the a cliché (but I will anyway), without cancer I would never have had a year at home to spend with family and friends, I’d never have met any of my teenage cancer fighters and survivors and would never have had the time or confidence to travel to like I am now. My hair has started to grow back and compared to others, luckily my long term side effects appear to be minimal: low level fatigue, possible lung scarring, being minus a toenail, a continuing fear of needles and a hatred of cheese and Branston pickle sandwiches (my lunch on the first treatment). So I won’t be a marathon runner or a preserves critique any time soon and I’m never allowed to be a blood donor, so overall not a bad outcome!"

 

If you have been inspired by Ciara's story, and would like the opportunity to share yours then please email teens@teensunitefightingcancer.org for support.