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Leila's Story

Leila was diagnosed with Acute Lymphoblastic Leukaemia (ALL) when she was 13, now 32 Leila lived with the late-effects caused by the treatments used to save her life. Leila Shares her story: 

“I was going about my daily life going to school, playing with friends and being a typical teenager. It wasn’t until someone close to us said to my mother “your daughter looks very pale”. That short little sentence at that moment in time turned our lives upside down, from then on life would not be normal again.

Most of my symptoms were of a typical teenager like being lazy, not wanting to do anything and having what I would describe as growing pains, it never dawned on us that it could be cancer.

I was told that is was leukaemia but I didn’t know what blood cancer was, only what I learnt at the time. So I was in my own bubble, until I got the ward and saw a collage of children that had no hair and that’s when I realised what was going on then.

It was at that moment in time that I thought to myself, this is something serious. I felt emotionless and stopped communicating as it was something that I had control over whilst my life shattered into tiny pieces.

In September 2001 I started gruelling chemotherapy lasting until February 2004. Experiencing the normal side effects like nausea, hair loss, pain and some other weird and wonderful bugs that you pick up when your immunity is very low. I was very sensitive to chemotherapy which meant a lot of hospital admissions but I got through treatment with the support of my family.

Once treatment finished, I resumed normal life.

I was in Year 11 and I went back to school full time two or three weeks before my GCSEs started. With hindsight I did achieve really great results, I had A and B, four Cs, to come out with any GCSEs it was an achievement.

After those couple of months, I started to feel poorly again but that was a whole battle in itself to get diagnosed with relapse.

I think it was a mixture of things because, with the best will in the world, people think that because you’re cured you can’t be relapsed so they don’t go down the route of looking at that, plus all my blood work was fine too.

I was in and out of A+E from Sept 2004, over Christmas I was in hospital because I was in excruciating pain. I had all the tests and a scan on my ribs but because of the nature of my symptoms they thought it was lung related so they went down the route of pleurisy, pneumonia, blood clots.  Even one diagnosis I had was that my school bag was too heavy because I was studying towards A levels then. Then my consultant decided to do a bone marrow biopsy and it turned out to be relapse.

The second time you go through treatment you know what to expect because you know what’s going to happen. I had even more aggressive treatment with two ICU admissions due to septicaemia. However, this wasn’t enough because I didn’t achieve remission so a Bone Marrow Transplant was planned.

In May 2005 whilst my friends were sitting exams, once again I was going through the biggest challenge in my life. There were some hiccups like Graft vs Host Disease (GvHD), extreme pain and loss of appetite which resulted in having a feeding tube. The whole process was very extreme because the aim is to eradicate your own immune system to make room for your new donor cells.

INFORMATION:

Because the time we’re talking about is going back 10, 15 years ago there wasn’t as much support around. We got a few leaflets here and there explaining what leukaemia was but not on what treatment meant. Obviously before each treatment my parents being my guardians, they went through all the treatments but there wasn’t as much information available as there is now adays. I was learning everyday what the different drugs were doing, so it was a case of a waiting game. I’m having this drug what is it going to do to me and what effects, even though the Dr mentioned its going to cause x y and z you still don’t know what to expect, especially when it comes to long term as well.

Fast forward fifteen years later, aged 32, I consider myself to be a survivor and live with a lot of long-term, late effects as a direct result of having chemotherapy and total body irradiation (TBI). There isn’t a lot of research into long term effects some are known but most side effects are not known nor when they will strike, this is why we need less harsh treatment in treating children’s cancer.

LATE EFFECTS:

So the main one that affects me most is avascular necrosis in my knees, hips, tibias (the long bone below the knee), one shoulder and they suspect its in my ankles now too. Avascular necrosis means bone death. The bones die when the blood supply gets cut off at some point, that causes the joints to collapse and the only cure is hip replacement etc but when it comes to the tibias there’s not much they can do about it.

I’ve got cataracts from the radiation, early menopause from the radiotherapy and I’m on HRT. I started that when I was 17 straight after my transplant and obviously, I’ve got fertility issues because of the ovarian failure and the early menopause

It just seems to affect your body a lot more compared to someone that’s my age won’t necessarily have the issues that I’ve got, it’s discovering all these issues as they come on and you don’t know when they’re going to hit either.

Then years after when you’re in remission, you might not be in touch with your care team from children’s or you don’t have that rapport with the adult service.  And its up to you to navigate the system whether through your GP and saying I’ve got this can you refer me to this service, its really difficult. Sometimes it can be really lonely

Up until age 21 I was seen at the children’s hospital and that’s when the transition happened for me. It felt really bad because you’ve been under the care of children’s for however many years and then suddenly that network is just withdrawn, you’re in totally different place and you don’t have that rapport with the team because they’ve not seen you at your poorliest and the relationship is not there.

EDUCATION AND WORK:

After her bone marrow transplant in May 2005, Leila was back in college by the November, to study for her A levels. But she wasn’t successful.

I was really sad because I’ve been through all this and now my education has been affected so I decided to repeat A levels again but then that’s the year all my late effects hit, so I was like “This is it, life is over I’m not going to achieve my A levels and I’m not going to go to University”. So I decided to change all my subjects that I was going to do, change the college I was going to so a fresh start. I came out with more A levels than I did GCSEs so from then I went onto University.

But I had a whole pile of late effects hit me again, I just couldn’t cope with the course, the demands of it because I was diagnosed with avascular necrosis and it was really excruciating. Walking was so difficult and you know with campuses at University, you can be walking for miles going from one lecture theatre to another. By the second year my grades weren’t so good and there were a few units I didn’t pass and then I was thinking ‘Is this really me?”

I think going through the experience, of surviving cancer, you don’t mind chopping and changing because you’ve seen life and not that you’re wasting your life but if you want to make a choice you will make it. …in the second year I was like, this is not me I’m just going to find a different course.

I changed my course to Learning Disability Studies. The course was a lot more gentle, and I was only in 3 or 4 times a week. They were more understanding of what was going on with me as the course also looked at how society effects people with disabilities plus it was really interesting and I graduated in 2013. With my degree and I thought I’d never achieve that.

A lot of people think that if one thing doesn’t work in life that’s the end of the world, they’ve got to stick with it no matter what. But there are so many more choices you can make in life and its not the end of the world

After University I worked with children in different environments at school, at sports camp then went on to do PGCE teacher training. It was pretty tough going and I didn’t get the correct support so by the end of it I didn’t pass again and I was in a really bad place.  All the stuff that had happened to me treatment wise and being diagnosed with cancer all hit at the same time in 2014 and I had a really bad mental health breakdown. I was referred to the Psychology Oncology Team at my hospital and I saw a counsellor on a regular basis for a couple of years.

I didn’t know what I wanted to do in life and with obviously all the physical effects, employment was difficult.  Employers don’t want someone who has to take time off for hospital appointments or for being off sick so full time employment wasn’t an option for me and I’ve tried.

I applied to various jobs, at one point I was doing respite care for children with autism and that was really physically demanding, really brutal and then I tried being a Teaching Assistant and again I was on my feet the whole time and I was coming home in excruciating pain. I became fascinated by arts and crafts and discovered polymer clay and resin and just experimented and it was part of my art therapy as well so it was therapeutic at the same time and helping my mental health

I did a business course with a charity, and at the end of it I established my own business in 2017 December, I thought I’d never do that. So that was another achievement in my life, a major achievement.

2018 I had an accident which set me back business wise, I didn’t do much in 2018. But 2019 was my best year of trading; I did markets such as Manchester Christmas market, I had pop up shops in Kings Street and elsewhere. Obviously with Covid happening I’ve not done a market since March and even if the organisation I work with did open up markets again, I’d be reluctant to return.

So at the moment I’m focusing on re-branding and trying to move my business online, its a lot of hard work! I make jewellery and charms out of ploymer clay and resin, its more bespoke, unique jewellery rather than your traditional gold or silver.

SUPPORT AFTER TREATMENT

Leila was in her early Twenties before she had access to specialised support for childhood cancer survivors.

In 2010 I went to this massive conference [‘Finding Sense of Tumour’ with Teenage Cancer Trust] to talk about different health issues relating to having cancer treatment or having cancer. People there were similar age to you and it was really nice because you can talk about things your parents might not understand or you wouldn’t want to talk to them about. That was the first opportunity I had when I could talk openly to people that knew what I was going through.

You can’t always mention things to your parents because they won’t understand. They’ll try to understand, they’ll do their best but unless they’ve been through the journey that you have been, they have been but from a different point of view. I suppose for them as well, having that support network with other parents would be helpful because they can talk to each other and if they’ve got any concerns or worries.

When I was diagnosed my brother was 3, he couldn’t understand what was going on and why his mum wasn’t at home with him. I think he had a lot of difficulties processing that and it does affect him even now. So its definitely really important to include siblings because its not just happening to you, its happening as a family. Whether its because they’re not having much attention from their parents or they’re worried or scared something is going to happen to you but they can’t really ask that, so maybe having other siblings they can talk to will help them open up a bit more

My sister was doing her GCSEs when I was diagnosed, it was really tough on her. Suddenly she had exams to sit and she was looking after my brother as well because my Dad was at work from 9-5, so it was up to her to juggle homework and look after my brother. I think she was 15, all of a sudden, she had to grow up really fast.

The main thing is for the person’s perspective going through this, obviously it is brutal but take it a day at a time. There is light at the end of the tunnel but for people who don’t have any experience relating to cancer, just because you’re in remission from cancer doesn’t mean it stops there. These side and late effects come on later in life there’s a whole list of them.

Just because you’re in remission from cancer doesn’t mean it doesn’t affect you on a daily basis. When people find out I had my treatment for the first time 17 years ago, second time 15 years ago now, they’re like ‘oh you’re all better now but why do you use crutches or why are you in a wheelchair or why are you going to hospital so much”. Its difficult to explain and they just think because treatment ended that’s everything over and you’re all better. But its not the case, it’s a lifelong thing.

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