"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 3rd 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 11th of February 2016 and had a scan roughly 6 weeks later. On the 1st 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.
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