Ellen Bisci

Twenty-six-year-old Ellen Bisci from Harrow recently received a Paul Harris Fellow award with a sapphire pin from the Rotary Club of Kingsbury and Kenton in recognition of all the work she does to raise awareness of childhood cancer and its late effects. She was just nine years old when she was diagnosed with acute promyelocytic leukaemia (APL) after her parents noticed unusual bruising.  Now she is part of the TYAC, Professional Education Group as a young people’s representative hoping to improve the care young people receive. Her own diagnosis as a child came quickly after a trip to A&E, but it was a different story when she relapsed at the age of 12, her bone pain mistaken for growing pains. In remission for 12 years, Ellen is sharing her Spot Leukaemia story, and hopes to raise awareness of the late effects of treatment.  

“I was first diagnosed in May 2005, aged nine years old. I was the type of girl who never had a day off of school, I was always well! I was a high achiever, very bright and my favourite subject was maths. I had a large group of school friends and enjoyed all aspects of school life. 

“Then I developed bruises and my mum took me to our local A&E hospital where blood was taken. I was then sent home and told that they would be in contact if there was anything wrong. This was on a Friday night and I was due to go on my first big school trip to the Isle of Wight for the week on the following Monday. I was so excited and loved the coach trip and ferry, and even more excited when we arrived at the hotel and we picked our rooms. We then went down for dinner and it was then that everything changed. My headmistress called me over and I was told that the blood tests had come back as abnormal and that my parents were on their way to collect me. I was completely and utterly devastated. 

“I got the last ferry home back to London and the following day I arrived at GOSH. The first thing I said when I arrived at Giraffe ward was, “Wow mum look how ill all these children are.” Little did I know that soon I would be just like those other children. It was that day that I was told that I had cancer, but if I’m honest I was oblivious to what that really meant and what I’d have to endure over the following months. 

“The first task was getting bloods (I hated needles) and to say I screamed the place down was an understatement. Over time I got used to needles and now even when it takes doctors eight times to get blood I just let them get on with it. I had four blocks of treatment for acute promyelocytic leukaemia (APL) – one to two weeks of very high dose chemo, a couple of weeks (or however long it took) for my counts to recover, and then five to seven days at home before the whole thing started again. It was a really, really tough time, especially for someone so young, but I look back now and think of it as a breeze compared to my treatment after I relapsed. 

“The chemo caused a lot of side effects – terrible sickness/vomiting, diarrhea, excruciatingly painful mouth ulcers, fatigue, and I just generally felt horrendous constantly. I was completely dependent on my family, and my mum and aunty would alternate night stays at the hospital as I couldn’t be left alone. My grandparents drove up to the hospital every night and for me that was some normality. My appetite changed and I was constantly fancying different foods that my family would bring in for me. GOSH have a hospital school but I was barely well enough to sit up let alone do any schooling. I missed school life and my friends so much and for me that was the toughest adjustment through this time. 

“I went into remission pretty quickly but of course treatment continued for the full four blocks and there was never any question that I’d relapse, it was just never mentioned. My life had completely changed, and I’d basically lived in a hospital for close to six months, so the adjustment back into normal life after treatment finished was tough. 

“I went back to school as soon as I was able to, first of all starting with half days to begin with but after a couple of weeks I was back to leading a full school life; I didn’t really have much fatigue and felt well. 18 months after I finished my treatment, I had my SATS exams and I was the only student ever in my school to receive 99% in my maths SATS – this was a huge achievement for me. 

“The following academic year I started year 7 and was loving high school. The February of that year (2008) I started with severe pains in my legs and even had to stop sports at school. I remember my friends having to tell my teachers that I was just in too much pain to continue. My mum and I went to my GP and we were told that this was due to growing pains and that as I was a little overweight I needed to continue exercising and lose some weight. The pain continued and my family then took me to my local hospital one Sunday evening as the leg pain was worse at night and I had developed a headache and was seeing flashing lights. The hospital did a brain scan which they said was clear and I was told to go home and that it was a migraine. A consultant from the hospital then called me on Tuesday to say that I had “spots” on the brain, and I was told to go straight to GOSH. 

The next thing I remember is being in a room with my family at GOSH and my heamatologist telling me that the cancer was back and I just remember wailing. I was 12 and I understood more of what was going on than before. I’d also obviously been through treatment before, so I knew what was coming. Once again treatment began – it wasn’t the standard four block treatment that I’d had before as treatments had changed, and also because I’d relapsed so late. “Unfortunately, over the coming days and weeks I had two massive strokes and was unable to walk, talk, communicate or do anything for myself, so I was completely dependent on my mum and aunty – it was absolutely horrendous. My family and I were told that I wouldn’t necessarily regain any of this as I’d lost a third of my brain function, but I was so determined. Being on chemo and having daily rehabilitation in the form of physio, occupational therapy and speech and language therapy was really tough. Once again, I lost my hair and all the horrible side effects returned. 

“However, a new treatment had been found, so after the intense chemo I had arsenic and ATRA treatment as an outpatient. There wasn’t really any excitement about being home as I had to go to the hospital for about 12 hours daily (including the commute) for treatment. The ATRA caused intracranial hypertension, although this wasn’t diagnosed for many years, so it was a real struggle emotionally for my family to get any answers of what was causing this horrendous and constant headache and sickness. For the second block of this treatment I was admitted to GOSH as it was just too much coming back and forth every day. 

“When the treatment finished it was a real battle to get a diagnosis of intracranial hypertension as generally, once the ATRA has finished, so should the symptoms. I’d had one intracranial shunt fitted which relieved symptoms for three weeks but then my headaches returned. I’d also started having seizures around this time, but I wasn’t put on any medication as the hospital presumed they were ‘pseudo’ seizures due to PTSD. There was never a suggestion that the shunt could be broken and we went back and forth. Eventually, my family paid for me to see a neurosurgeon privately who confirmed that it had probably broken after three weeks of being inserted; I then had a new shunt inserted and have since had multiple brain operations (my last one July 2019). As well as having a new shunt fitted by him, I was also referred to an epilepsy neurologist who started me on antiepileptic medication and I haven’t had a seizure since (it’s been nearly nine years). 

“I have since been diagnosed with chronic migraine and have Botox injections every three months to control my daily headaches. I have postural orthostatic tachycardia syndrome which causes daily dizziness and sickness and am on medication for this. I suffer with severe chronic fatigue which impacts my daily life and therefore I have to really pace my life. I’m also on medication for hypothyroidism and have urinary dysfunction. Last year, after a return of some symptoms and severe breathlessness, I was also diagnosed with mild left ventricular systolic dysfunction due to the chemo that I had in 2008 – this was a real battle to get diagnosed as it had come very late after treatment. 

“I wanted to include the late effects and side effects that I am now living with and I have an Instagram page @ican.cer which highlights the late effects of cancer. It is my mission to both highlight and connect others who are in the same position as me. I have spoken to many people young and old who are struggling with late effects and who have no support group or friends who understand what they are going through. The cancer may have gone but our lives are still impacted daily by the devastation it has caused to our bodies. 

“I have now been in remission for 12 years. As I look relatively well most days, it has been tough for friends, family and doctors to always understand how unwell I am. There are still many days when I cannot even sit up as I feel so ill, but there are other days when I put make-up on and you wouldn’t know what I am living with. This is something that I find tough to deal with as someone saying “but you look so well” makes me feel invalidated, but I have learnt to accept it as people are saying it as a compliment. 

“Emotionally, it has been really tough on both me and my family; I still see a psychologist regularly and am on 20 tablets a day. I am very fortunate to have a really great support system of family and close friends (I couldn’t have got through all this without them) and I am a young adult ambassador for the charity Trekstock who support young adults through and beyond cancer—the charity is a huge part of my life. 

“I was working part-time with children with special needs (which I loved) but I have been off work due to the LVSD and the side effects of the medication I am on. I am hoping to return to work one day but for the moment I am not well enough at the moment to take paid employment due to my health and late effects but I work on a voluntary basis with charities promoting awareness of childhood cancer and late effects (recently working with Children with Cancer UK, Trekstock and Teens Unite) and I run the Instagram page @ican.cer to build a community, share people’s experiences and raise awareness of the late effects of childhood cancer.  I have a real passion for the arts and enjoy going to musical theatre and opera. I am a bit of a bookworm and love reading. I go to church and prior to the pandemic I was singing in my church choir. I enjoy socialising with friends and living life to the full, since having cancer I realise the importance of enjoying the small things in life and living life to the full.  

“I have been in remission since April 2008 but treatment continued and I had maintenance chemo until mid 2009. I have had another brain operation due to one of the machines needing to be removed in my head in August last year (2021), during the pandemic. My heart failure, diagnosed three years ago has also been very up and down and therefore my medications have needed to be altered which always give me side effects.  The pandemic really altered my life as I was due to go back to work but had to start shielding. That was a really tough time and continues to be so as I am still being pretty careful due to reduce COVID risk, for people like myself life is still very different to what it was pre pandemic and that is tough. Despite all of this, I try and stay hopeful and positive and everyday I am thankful to be here. I’ve realised over the past few years, how important it is to enjoy everyday that you have. Of course there are days where I feel really unwell (I live with pain, fatigue and medication side effects everyday) and a little fed up with all my late effects but I try to be kind to myself and hope that tomorrow will be a better day.  

The Spot Leukaemia campaign is important to raise awareness of the signs and symptoms of leukaemia. Ultimately education and awareness means earlier diagnosis and that saves lives. The second time I had leukaemia, I was diagnosed late, I kept going to my GP but my concerns were dismissed. Had I been listened to earlier, perhaps now I’d be in a different position. I hope that through this campaign we can educate more people to know what to look out for and therefore more lives will be saved!