Helen Lerebours: my story

My diagnosis

“In August 2015 I began to feel unwell, but it didn’t feel like anything out of the ordinary. Now, looking back, this might have been the start of things. I was sick a few times and had a gastric bug and when I was invigilating an exam, I had to leave the room as I began to sweat and feel really unwell. I pushed through as I had no choice and the following weekend; I got a terrible abscess on my tooth. I will never forget how much pain I was in. My dentist was great and asked me at the time if I had been feeling run down, but again, I didn’t make any connections.

The strange symptoms continued as I woke up one morning with a swollen foot from an insect bite, and I couldn’t walk on it for a few days. After that my health declined, but my son had started school, and I was doing everything in my power to get him settled in and to carry on working. I put feeling tired and unwell down to being a busy, working mum.

It was around that time things got worse, and I began to be too tired to go to work. I would drop my son off at school, go home and sleep on the sofa. I was having night sweats and my glands swelled. I was really ill and had not been feeling 100% for about 6 weeks at this point, so my mum and dad came to see me and told me to go the GP. I went along and cried to the GP, telling him I didn’t know why I felt so bad. And he arranged a blood test for the following week.

During that week, I was wearing a dressing gown over my pyjamas to go to bed, wearing a woolly hat and developed terrible shakes while in. I was waking up in the night changing my clothes and bed sheets, and my husband was sleeping in another room. I felt like I needed a nurse to help me get through the night.

My mum and dad came over from Liverpool on the day of the blood test, took my son to school, took me to the GP and then I went home and must have gone to bed. I don’t remember anything apart from picking my son up and seeing his face fade away in the living room while I went back to sleep. I now know I was losing consciousness. I had no control over what was happening to me.

I went to bed that night before hearing a knock at the door at around 1:00am. My husband was downstairs and he opened the door to a man holding a classic doctor’s bag. He asked if I was there and if my son was there. It was one of those surreal moments where it felt like there was a void in the room. He asked if he could come in and we went to the living room. He told me I needed to go to A&E as I was very ill and asked if someone would be able to look after my son.

He called the hospital, and we listened as he gave my details. ‘I have a patient coming in who has leukaemia’. My husband and I both did a double take, and I don’t remember much apart from then being in bed with horrendous shakes again. We called my brother who lived closest to look after my son and called my mum and dad to come over.

When we reached the hospital, I remember looking down at my legs thinking, I am not sure I can make it across the car park. My energy was gone, and I was frozen. However, when the nurse in the triage took my temperature, it was well above 40 and she told me to take off my hat and my dressing gown. It was a real shock to know it was so high.

I then woke up on an A&E ward side bed and the doctor told my parents I had leukaemia. As my mum questioned the doctors, I looked at him, he looked at me and in the kindest possible way he nodded his head and said that I did have leukaemia. I remember getting up and wheeling my drip with me to the toilet, with my mum, and having a huge haemorrhage. My body gave in.

The next morning, my brothers had arrived, and we were told I was going to The Christie. Being in the ambulance with my mum and looking at the gorgeous shadows of the trees and leaves inside the ambulance, I was at peace. It’s weird thinking that I could have been, but I was. Thinking back though, I know I was just a shadow of myself at this point.

My mind and body were that exhausted that this peaceful and serene feeling was because I was dying. My family were told they were not sure if I would live or die at that point, while I was none the wiser. I had no energy and was unconscious most of the time. I had no real knowledge of what leukaemia was. Now I know I had sepsis and treatment had to start immediately.The next day they did a bone marrow lumbar puncture. I remember holding my husband so tight, but not much else.”

Treatment

“My chemotherapy started and for the next two weeks I was somewhere else. I was like a primal version of myself. I experienced some incredibly anxious times, not being able to sleep and just feeling so scared of not being in control of what was happening to me.

After two weeks of treatment, I could sit up and began to feel more like myself. They begged me to eat and at one point I made an effort to get out of bed and sit in my chair. I remember waiting for my meal and eating it, before crawling back into bed and crying with how tired it made me feel. I went into a sweat and just felt so weak. It was these moments alone that were often the time I could really reflect.

That week I had visitors, cut my hair, and tried to get a grip on what was happening to me a little bit. I found out that I couldn’t read, watch TV or focus on much, apart from singing. It was such a gift, I had not sung since school really, and found it helped to process and feel hope and happiness. My husband would bring in his guitar and it would be lovely. I also got to see my son, but this was bittersweet as I didn’t want him to be scared of how I looked. We chose carefully the time he came in and everyone supported us enormously to make sure that his life continued as normally as it could.

I had around a week of being well, but then when the transfusions began, I developed a rash which swelled and became absolutely excruciating. It was like nothing I had ever felt in my life, and nobody knew what had caused it. At night I had to have a nurse with me constantly. I remember screaming out and the nurses running down the corridor to get ice packs to place on the back of my legs. It was relentless at a time when I was already so ill. I remember my brother coming in early to see me and I will never forget his face, he was devastated to see me. I think with the rash, losing my hair and being so lost and churned up, it must have been a shock. I have never spoken to him about it, but that day my whole family visited and sat by my bed side. I slept when they were there and felt safe.

My husband and the nurses covered up the mirrors on my request as I couldn’t bear to see myself. The Christie got specialists from various hospitals, and one prescribed me a cream that finally brought me some respite. I was also given a course of immunoglobulins the following weekend. They realised at this point that I was allergic to the platelet transfusions. From then on, my platelets came from Sheffield and were HLA matched. I was so privileged and lucky to have received such amazing treatment.

From then treatment went well, I went into remission and received a prognosis that I would only need chemo. I was allowed home after 5 weeks, which was a challenge, and I had many moments of realising how weak I was. I couldn’t climb stairs, chop veg, I couldn’t sleep with the trauma of it all. I was petrified of dying and it all sank in. I had some very dark, long nights once I had time to process what had happened. Getting back to life in between treatments was really hard. We had bills to pay, I had to cook and clean while my husband worked, all while having this awful illness. It was hard but we were hopeful the future would be better.

While away from the hospital the first time, I got an infection a week later and had to go in for antibiotics, but we caught whatever it was early enough, and then a week later I was back in for my next treatment. The late November treatment went by without much drama, apart from having further trouble with platelets and I began to have difficulty breathing. Soon after this, they realised I had developed a reaction to the HLA matched platelets, so I was to have steroids and antihistamines before my transfusions.

In December I went in for my third round of treatment and The Christie timed it so that I could leave on the 23rd December and be home in time for Christmas. The 18th was my son’s 5th birthday, which we celebrated at the hospital with a takeaway. The staff brought him ice cream which he hasn’t forgotten to this day. They were always so good to him. By this time, I was able to see him during treatments and it just became our life.

On the Saturday, they let me go out for 2 hours so he could have a party. That morning, they gave me my chemo early, and although they gave me my anti-sickness drugs, I was so exhausted that I forgot to take them. They put the chemo machine on, and I went to sleep. I woke up and I will never forget the feeling of sickness in my stomach. It was like an empty feeling, like someone had dug right down into the pit of my stomach. I took my medication and slept. I then went to the party, but I can’t remember very much of it. When I returned to hospital, I just slept. It was exhausting to do something normal and looking back I should have rested and took the time I needed to heal, but I wanted to be the mum my son was used to.

I went home for Christmas, and it was very special with the family. I had to be careful as I didn’t have many neutrophils, but luckily, I didn’t get sick. However, in early January when I was due to go into The Christie for my blood transfusions, I woke up and had a funny buzzy feeling in my head. I told my parents, so we took my son to school and went straight to The Christie. By the time I got there I was having rigors again and my temp was through the roof, I remember lying on a bed and seeing some worried faces. My body spiralled. Nothing really made sense, but I got the gist that they couldn’t control my temperature and they thought I had an infection in my PICC line. I didn’t know the nurses and doctors helping me at this point which was disconcerting, and I remember screaming when they took my line out as I thought it would be awful, but it wasn’t. The high temperatures really altered my mind, and I wasn’t myself when I was very sick.

In the February it was my final round of chemotherapy, and it went well until I developed an infection and had to go to a different hospital to be treated. It was pretty awful with a non-specialist team, who didn’t know me. At one stage I left the hospital to go out, despite them saying I shouldn’t. I fell over in a car park when I had really low platelets and I still have some scarring on my knees. It was a bit of a lesson and I stuck with what they told me to do.

I was allowed home after some tests, and each month I would revisit for bloods and check-ups. The doctors and nurses were so kind and supportive of me, it was like family. The longer this went on, and the better I felt, the more I realised how sick I had been. Revisiting brought up huge waves of emotions and sometimes it was overwhelming. In May 2016, I received the news that I was in remission to a molecular level and that I was cured. I don’t think I let myself believe that until very recently, almost 6 years on.”

Life beyond leukaemia

“In September, much to our surprise, I found out I was pregnant with my daughter. Such an emotional time, such an uncertain time, but I knew it was right for my story and I was so well cared for by everyone while I was pregnant. Having a baby post-cancer was such a healing experience and I felt so privileged to feel that my body was able to take on a pregnancy. Having my daughter Sadie in April 2017 welcomed in the future and helped me to put my leukaemia behind me. I felt very grateful and lucky.

In those lonely times in hospital, you ask yourself deep questions, and when you get another chance at life, you really do realise how things can change. I have trained to be a yoga teacher; I brought singing into my life and sing for family and in my yoga retreats and I’m about to become a singing guide.

I am now 8 years in remission, and we said goodbye to Manchester 10 months ago, recently being discharged from The Christie. My husband is French, so we decided to take the leap and move to the French countryside to have a quieter life. We are growing our own vegetables; we have some chickens and are taking things slower. I have realised that I don’t cope with stress very well and to protect my health I need a slower pace of life. We are so happy and live our lives differently now, taking each day as it comes and trying to live in the present, enjoying our children.

I am forever grateful for my medical team at The Christie. It made me realise that perfect strangers such as them are ready to fight for you, when you don’t have any fight. They are willing to stay up all night and look after you in your darkest hour, even if just to hear you and hold you. My parents, friends and family (my husband especially) stood by me and walked the path with me. I know without all the support and love from everyone involved, I wouldn’t be here today. I live my life now in honour of them all and try to be present and as grateful as I can be. It is an experience I will never forget, and one in which was often the worst times, but has changed my life, and I am lucky to say, for the better.”