Posted on Tuesday 8 January 2019
Sara’s story – my cancer came back
My name is Sara Owen and I’m 18, I am from Colwyn Bay, North Wales where I live with my mum and dad and my Border Terrier, Pero. My cancer story started in 2013 with symptoms affecting the sensation and motion down the left side of my body.
‘Luckily’, I was diagnosed very quickly with a right fronto-parietal lobe brain tumour, about a week after the onset of these symptoms.
I underwent neurosurgery at Alder Hey Children’s Hospital in Liverpool in February 2013 a few days before my 13th birthday, which led to my diagnosis of having a grade 2 Ependymoma, a rare brain tumour.
At my follow-up appointment in the joint neurosurgical/oncology clinic along with mum and dad, we were not only told that I would need further radiation treatment, but also that the best option would be to go to the USA for proton beam therapy, funded by the NHS. The reason for having proton rather than conventional radiotherapy was to reduce the risk of long term radiation effects on other parts of the brain as proton beams can be focused more accurately than conventional photon radiotherapy.
To be honest at just 13 years old I was finding it very difficult to understand just why my world had been turned upside down in just a few short months."
Anyway, after an anxious wait in April 2013 I flew out to Jacksonville, Florida to receive 33 treatments over 7 weeks to my tumour site at the University of Florida Proton Beam Institute. Despite the horrible reason we had to travel there and the fact I felt unwell most of the time there, the experience of living in the Jacksonville for over two months was incredible.
The health professionals in the treatment centre were all so supportive and welcoming, it is a very special place. We arrived in Jacksonville with great anxiety and left with a heavy heart, it is a place which will always mean something special to me and my family.
On return home in mid June I was extremely tired after all the treatment as well as having headaches and nausea. It was now that I started to regularly see my amazing CLIC Sargent Nurse who supported me with advice when I was feeling low in mood and acted as a link through to my oncology team in Liverpool some 60 miles away from where I live. Without her support, I would have found it difficult to recover as well as I did.
In September 2013, I returned to school. Despite missing almost half of year 8 I did not go back a year but went into year 9 as my teachers said I would easily catch on the work I had missed. This was generally true but I struggled in some subjects and my fatigue caused me to struggle with the long school days.
The other thing that was difficult was that despite my school friends being supportive throughout my illness, being away from school and the fact my fatigue left me unable to meet up with friends on the weekends meant I had missed much of the relationship development that happens at this age and I think it left me at a disadvantage all the way until I left after year 13. During this difficult time Rhian, my CLIC Sargent Nurse, was always there and helped me get some counselling through my local hospital which was really helpful.
As time went on, I attended outpatients for routine scans and continued my education slowly starting to feel better and more confident in my health. I managed to do very well in my GCSEs and entered the sixth form at my school. I had decided that I wanted, if possible, to become a doctor in order to research and perhaps develop treatments to result in better outcomes for children with cancers so it was important I got high enough grades to help me enter the highly competitive medical school application process.
I entered my A level years and though still troubled by headaches year 12 was relatively uneventful and I managed to get three As at AS level which allowed me to continue with my medical school application process.
Then the bombshell burst.
In September 2017 while attending for one of my numerous follow up scan (which had all been normal), my oncologist told me that there was probably a recurrence of my tumour at the original tumour bed and the best advice was that I should undergo further surgery to determine its nature.
After much agonising over the best option, and again with the support of Rhian, I decided that I would have the surgery, which was carried out once again at Alder Hey in October 2017. My mum and dad did not know it but I had my doubts about having the surgery up until the very last minute. The surgery went well, the skills of the neurosurgeons never cease to amaze me, apart from having three post-operative focal seizures which meant I was put on anticonvulsants.
At follow up clinic it was confirmed that the new lesion was a relapse of my Ependymoma and that further radiation treatment was advised, this time using conventional radiotherapy at the Clatterbridge Treament Unit on the Wirral in Cheshire. Proton beam therapy was not recommended this time, we discussed this with my radiation oncologist in Florida and he confirmed that this is the treatment he would also recommend.
It was with some apprehension that I started my 30 treatments of conventional photon therapy at Clatterbridge. This was partly due to special way I was treated in Florida, and also due to the fact that I was wondering if the treatment would be worth it as if it didn’t work before, why would it work this time?
This had a big impact on my mental health and so I was very low in mood throughout much of my treatment. However, the Clatterbridge team treated me wonderfully and I soon felt very comfortable with them and also sorted out seeing a clinical psychologist to talk about my mental health with. It was a completely different, more difficult experience than in Florida this time as we were travelling 50 miles each way by car for each treatment in the midst of winter over Christmas and New Year and I was still trying to attend school whenever I could between treatments. We all found this a very exhausting time.
If I compare my experience between proton and photon treatment I would say that I had more fatigue after the photon which has lasted longer. Indeed, the post treatment fatigue has been difficult to cope with. It is difficult to explain to people just how profoundly tired cancer treatment makes you.
During my recovery period, I continued to receive support from Rhian and I started to regularly see my CLIC Sargent Social Worker who supported me and liaised with my sixth form teachers to allow me to go to school when I needed to but to leave when I needed to go home to rest. They also helped me deal with the loss of independence I experienced as a result of having to rely on my parents to constantly drive me to and from hospital appointments and being unable to meet up with friends very often once again.
The treatment ended in January 2018 when I rang the celebratory bell at Clatterbridge. Following that I struggled with headaches and fatigue while also continuing to attend school and study for my A levels. It was a struggle and I received a lot of support from my teachers. The months from my end of treatment until A level examination contained many struggles and low periods because of the fatigue but somehow I managed to get the grades I needed to get into medical school and in September 2018, I moved to London to study medicine at Kings College London, where I intend to pursue my passion for treatment of childhood cancers. I still have fatigue which I manage as best I can by resting and pacing myself, but that can be a challenge when trying to live a normal university life. However, it is refreshing to no longer be known in school as the ‘kid who had a brain tumour’!
I have been very fortunate throughout my treatments in that both my parents are in good jobs and have understanding employers, my father however did lose substantial self- employed income while we were in Florida, luckily our family finances could sustain it. I also had been given a job offer in August which I was unable to begin properly until June due to my treatment and subsequent fatigue, however, luckily this was not vital income.
I know from websites that families who are not so financially fortunate struggled and were put at a disadvantage because of their child’s treatment, some having to rely on charity or online funding groups. I know some families were split up because one of the parents could not travel to Florida as they had to work in order to have income to support their families while they were in the USA, even with the NHS providing funding towards rent in Florida as well as the treatment cost.
Travelling backwards and forward to regular out patients appointments puts significant financial pressure on families less fortunate than mine. For example, over the course of my radiotherapy in Clatterbridge, we travelled 2820 miles, a significant cost in petrol. This doesn’t include all the previous and subsequent appointments I attended at this hospital either. By necessity to ensure excellence of care Paediatric Cancer Units need to be regionally based which means that many people travel significant distances for outpatients and treatment session and as all travel in this country is now expensive and that parents often have loss of earnings, a diagnosis of childhood cancer can put significant strain on family budgets resulting in long term disadvantage for all members of that family.
Sara featured in our World Cancer Day campaign 2019. Watch her tell her story in the video below:
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CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families.