Sixteen months into her treatment for ALL, Emma, 36, has encountered all manner of small setbacks. Currently undergoing two years of maintenance chemotherapy, she reveals to Bpositive how she hasn't let these difficulties get in the way of her looking to the future.
Emma, with partner Nathan in July 2016 The day the doctor called with my diagnosis, I was home on the sofa with an ice pack on my shoulder and neck to help ease the pain I’d been getting. I'd called in sick at work for the first time in about five years and felt a bit guilty because I didn't know if I should just be soldiering on regardless. It was the 5th October, 2015, and I was 35 years old. The doctor said that there were abnormalities in my blood and I had to go to the Freeman hospital in nearby Newcastle as soon as possible. I’d gone to my local surgery a few days earlier with headaches at the back of my head and, more recently, this pain down my neck and right shoulder. The GP had scratched his head when I told him my symptoms, but he decided to send me for blood tests. Looking back, I did have some others symptoms that I hadn’t given second thought to, such as excessive sweating, tiredness and odd bruises.
My partner, Nathan, and I arrived at the hospital in silence and looked for the ward number I’d been given. The doctor who saw us was really kind. He explained that the abnormalities in my blood showed I had Acute Lymphoblastic Leukaemia (ALL). I knew nothing about the illness and remember being so grateful to have Nathan there by my side. I also thought a lot about my dad that day as we’d lost him to cancer two years before. I wasn’t sure how I’d break this news to my mam and close family. I didn’t sleep the first night in hospital. I had way too much going on in my head. I was still in a lot of pain at this point and couldn’t get comfortable. But somewhere in that sleepless night, I decided that even though I knew it would be hard, I would find the strength to get through it.
"I decided that even though I knew it would be hard, I would find the strength to get through it."
When I met my consultant the next day, he told me I would have to have nine months of intensive chemotherapy, followed by two years of maintenance chemotherapy. Depending upon whether we achieved remission in the first two months, known as the induction, would determine whether I would need a bone marrow transplant or would have to continue with the chemotherapy. As well as induction, the intensive stage consisted of consolidation (the second phase of treatment) and delayed intensification (treatment to prevent the leukaemia from returning), a mix of chemotherapy drugs and regular lumbar punctures (this is when chemotherapy is given intrathecally to the cerebrospinal fluid that protects the brain). He explained that I would lose my hair and that I would need at least twelve months off work. He told me the dietary and lifestyle guidelines I needed to follow, as well as the risk of infection, stressing that infections can be life-threatening. It was a lot to take in.
Things moved pretty quickly from that point and in the first week I had a bone marrow biopsy (ouch!), MRI scan, heart echo, CT scan, X-ray, platelet and blood transfusion and the lumbar puncture. All these experiences were so new. Up until now, I hadn’t even spent a night in hospital. All of the medical staff I met were remarkable, explaining what they were doing and why. I was overwhelmed but also felt like I was in safe hands.
As things progressed, I was asked whether I wanted to take part in clinical trial called UKALL14. The research doctor came to discuss it with me and gave me three double-sided sheets of A4 to read through. I read them about four times but the information just wouldn’t sink in (it makes perfect sense to me now). Then my consultant came to see me and explained that the trial would test a new form of an existing drug along with the inclusion of a biological therapy. After a lot of thinking, I agreed to sign up and received a printed protocol.
After a week in hospital, l was given the medication to take at home and told that my outpatient treatment would start a few days later. The first month went quite well. I didn’t know what to expect but aside from being tired and a couple of issues that the doctors were there to help with, I felt relatively OK. I had a spectacular appetite thanks to the steroids. It was quite liberating to eat what I fancied and not to have to calorie count. I treated myself to some online retail therapy, buying lots of clothes that allowed access to my PICC line (this is used to receive infusions and take blood). I had my long hair cropped in preparation of it falling out and decided to donate it to charity. Nathan had taken the month off work so he was with me for all of my appointments, taking all of the advice on board. He made sure the house was germ free, and that a thermometer was in my ear at every given opportunity.
I had my first bone marrow aspiration at the end of month one and had achieved remission. That was the first tick in the box and everything was going to plan. My two specialist nurses were fantastic support, as were my family and friends. I knew I had a lot of people around if I needed them. The second month on my protocol looked daunting. I was dreading it. I had to go to the hospital every weekday for four weeks for chemotherapy and, whilst I didn’t really know what to expect in this cycle, I knew enough by now to guess that it wouldn’t be easy. Nathan took another month off work so he could come with me. I’d been told in the beginning that infection was inevitable. I remember my nurse telling me that she was surprised I hadn’t had one yet. My fear wasn’t of getting one but spotting it. During week three of the second month, I started to feel tired, nauseous and just out of sorts – it was no surprise that on the Sunday I had a high temperature. I went to the hospital and within 24 hours they’d found the source of infection and my PICC line was whipped out. I hadn’t finished the induction cycle of my treatment and, as it was a vital stage, the last five days of it was as an inpatient.
Emma, during her treatment in the ICU at the Freeman Hospital in Newcastle in December 2015
I was still in hospital when my infection indicators started to rise again and a CT scan confirmed I had an infected appendix. The surgeon came to see me and explained that in a normal situation, they would operate immediately as a burst appendix could be fatal. But, operating on a patient with no immune system could be just as dangerous. Less than 24 hours later, my appendix had to be removed by open surgery because there was a chance that my bowel was affected and they wouldn’t know the impact until they operated. The surgery went well, but as suspected there were complications. I spent the next two weeks in intensive care being fed through a tube, with lines and machines everywhere, mostly in a semi-conscious state. It was horrific. My close family watched me as I lay there lifeless and when I was awake I worried them with my confusion and incoherence. By now it was Christmas and all they wanted was to have me home to enjoy the time together.
My time in the ICU was hard. I remember having terrible paranoia that the nurses were out to get me and thinking the machines were coming to life or seeing people sat on my bed. It’s ridiculous when I think back now, but at the time I was convinced it was all real and it made me feel very uneasy. The day I came around from this foggy experience, just before New Year’s Eve, the renewed feeling of being alive and aware was simply wonderful. I had quite a lot of recovering to do when I came out of the ICU. I’d lost a lot of weight and I needed to learn to do things for myself again. I was lucky as I had some great people helping me to do this. I had another bone marrow aspiration to mark the end of the second phase of induction and I was relieved that I was still in remission. Even though I had been through one of the most traumatic experiences of my life, I was just so happy that I was here and moving forward. After a week back on the ward I was desperate to get home. I missed home-cooked food, I missed my own bed and I knew there were Christmas presents with my name on. It wasn’t that the hospital was bad, the nurses looked after me so well and the food was OK, but after seven weeks I had sores on my elbows from moving myself up the bed and I just wanted the comfort of home.
I was close to being discharged when the consultant told me my infection indicators had spiked again and that they couldn’t let me go home. I cried when he walked away and just thought ‘what now?'. In hindsight, I am grateful for how well they cared for and looked out for me and it would’ve been far worse to have to come straight back. I was sent for another CT scan and they found that I had tiny abscesses on my organs. I was given some antibiotics and within a week I was finally discharged. Even though I was elated to be home, I was so weak that a part of me felt anxious that my comfort blanket had been taken away. I had a 6-inch wound down my abdomen that was being packed and dressed in hospital so the district nurses had to come out to care for it.
Nathan had to go back to work but my mam was there to support me during the day and take me to my appointments. My consultant was really keen to give me an opportunity to recover but we also had to get cracking with the chemotherapy. When my counts were good, he asked me if I was ready to continue. Whilst I still felt a bit sore and pathetic, I knew how important it was to continue with the treatment and I was ready to resume. The next phase was over five days as an inpatient and whilst I’d only been out of hospital a couple of weeks, I knew this time I wouldn’t have to stay long. I’d learned a lot about hospital stays over Christmas, so I went armed with comforts, including my pillow and duvet. It was hard to move about without the use of my abdominal muscles, but I got through it and was out after five days as planned. During this stay I received a new central line because my veins were hiding after so much use. I decided to go for a Hickman this time after hearing positive stories from nurses and patients. I continued with my protocol for the next five months and it was predominantly as an outpatient with my mam for company. I had two inpatient stays and I got to know my body and the side effect from different chemo drugs. I found this really helped me through my treatment because whilst the hospital was phenomenal, you also need to take responsibility for what you’re accepting. I had most of the common side effects, peripheral neuropathy, a disorder that occurs when your peripheral nerves don’t work properly because they're damaged, mainly affecting my feet but also my hands and digestive system (this still hasn’t shifted). I had oral thrush, skin rashes, severe constipation, sweats, headaches, aching bones and abdominal cramps.
I found it really hard at times, my emotions were up and down depending up on the chemo cycle, but my friends, family, the nurses and my Hickman line got me through"
I lost my hair a couple of times because of the breaks in my treatment. I handled this much better than I imagined, partly because I knew it would come back and because I bought a beautiful real hair wig that looked just like my ‘normal’ hair. I quite enjoyed having no hair on my arms and legs. This period was intense though and I found it really hard at times, my emotions were up and down depending up on the chemo cycle, but my friends, family, the nurses and my Hickman line got me through. I started to look towards the end of intensive chemotherapy and towards the maintenance phase, which I was aware would be gentler. At end of July and twelve days since the last of my intensive chemo my counts were at their lowest point. My red cells were low so I went to the day unit to get a transfusion. Everything was normal that day and after such a challenging nine months I was ready to put it all behind me. About 15-minutes into the transfusion I started to get a headache. I called the nurse and she stopped my IV and took my temperature which was 37.7. It wasn’t uncommon for me to have a temperature at this time of year and after taking off my wig and having a break, I thought I’d be fine. But this day it was different. I was visibly shaking and my temperature wouldn’t come down, in fact it kept rising until it hit 41 degrees. By this point my blood pressure had plummeted.
I’m lucky that I was in the hospital when all of this happened. I had to be moved to the ICU (again) because my organs had started failing. I was put into an induced coma and rigged up to a kidney dialysis machine. It was another daunting time for my family as they once again had to sit at my bedside not knowing whether I would pull through.
When I came around from the coma and the confusion subsided, I was so relieved to have survived. It scared me how quickly I’d gone from feeling fine (getting blood was always a positive experience) to being so poorly. I was elated to have made it through unscathed, albeit with struggling kidney function. Thanks to my strong cardiovascular system and previous healthy lifestyle, I managed to fight through. It really spurred me on to make sure I regained some fitness after spending a lot of the last nine months recovering.
Once I was discharged from hospital, I spent some time relaxing. I’d learned that no matter how well you felt coming out of a spell in hospital, it’s so important to relax because it can take its toll. I took a couple of weeks to let my kidneys recover before I was ready to start maintenance. Maintenance is made up of two oral chemotherapy drugs. One is taken daily and one weekly, coupled with a quarterly intrathecal. The purpose of maintenance therapy is to keep the bone marrow under pressure, affecting platelets and neutrophils but not taking these down too far. Therefore, it can be a bit trial and error when it comes to dosing. It was a bit of a shock to the system going from being at the hospital so often (twice a week at the least). I felt a little bit lost not regularly known my blood counts or having someone asking me questions about my bowel movements. The treatment was really kind to me at first and I was starting to think that I would breeze through it, but by the end of October I was feeling rotten with gastric issues and extreme fatigue. It was mid-November when I noticed that the whites of my eyes were yellowing. I ended up having another stay in hospital with liver and bone marrow toxicity. Whilst I was gutted I’d ended up in hospital again, I was comforted by the fact that I was much stronger now and I was over the worst of my treatment. Once my counts recovered and I had a few platelet and blood transfusions, I was sent home again.
Emma, February 2017
"Although this has been one of the hardest experiences I’ve ever had to endure, I do consider myself lucky that I’m still here fighting"
It was now the end of November 2016 so I was given a break from chemo for the rest of the year to allow my liver and bone marrow time to recover and to spend Christmas at home. It was the best one ever, enjoying every single bite of my lunch. The break from chemo really helped me to gain some strength. It was refreshing to see how well I felt when I wasn’t on any chemotherapy medication.
I re-started maintenance in the New Year with a lower dose and a plan to monitor my bloods weekly before deciding when to increase. So here I am now, 16 months in and feeling positive about the rest of my treatment. I have learned a lot during the last year and a bit, particularly not to take anything for granted and to be ready for the possibility of difficulties, whilst trying to get as close to normal as I can. My hair is coming back in and I won’t lose it anymore – I just need the texture to be less wiry! I’ve also got my holiday bucket list ready for 2019 when my chemo will be finished. And, whist I haven’t returned to work yet, I’ve got a plan with steps to aim towards doing so. I’m lucky that I work for a great company who have supported me throughout my journey so far. Nathan and I were trying to start a family in the year I was diagnosed. My consultant enquired about freezing my eggs but there wasn't enough time before starting chemo so now we're now just waiting to see whether I'll still be able to have children when my treatment is done.
Although this has been one of the hardest experiences I’ve ever had to endure, I do consider myself lucky that I’m still here fighting. I’ve been able to do it knowing that I’ve got people around me, both personally and professionally. For all of the tough times there have also been moments of clarity and hope that I’ll have a long life ahead of me. I've recently signed up to be a Bloodwise Ambassador too, to hopefully help others in a similar situation.
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