One of my biggest passions has always been exercise and sport, not only taking part but also studying and working within the area of sport science. I was intrigued as to why I was suddenly unable to climb a flight of stairs without having to stop to catch my breath at the top, and why I couldn't keep up with my usual netball and gym training sessions. I decided I would take a few days out from training and rest over the weekend to see if I could shake these feelings. Having been a blood donor for years, I could relate how I was feeling then to how I felt after donating; a little lethargic and short of breath if attempting any type of exercise. Considering these similarities, I thought that I may be showing signs of anaemia. Without any improvement in my symptoms and increasing frustration of having to take a break from training, I went to my doctors for a drop in appointment the following week to request a blood test. When I listed the what I was experiencing, the GP told me that it was unlikely that anaemia would come on that quickly but he would allow the blood test this time round (fortunately for me), which would take five to seven days to come back.
Surprisingly, I received a phone call the next day, informing me that my results were back, and they had identified some abnormal cells in my blood, which had been sent off for further tests. Later that day, I was told that Queen Alexandra Hospital in Cosham, Portsmouth had a bed for me and I was to come in as soon as possible with an overnight bag, but they couldn’t tell me anything further over the phone. Once I had arrived, I was directed to the Haematology and Acute Oncology ward, I was taken to a private room, with my name on the door, and was informed that I had been diagnosed with Acute Lymphoblastic Leukaemia (ALL). My world had done a 180 degree turn in a matter of seconds and I realised very quickly that I wouldn’t be going home anytime soon. I had been plucked out of my life and dropped in hospital like the google maps street view icon, where I would remain for the foreseeable future. I couldn’t, well didn’t want to, believe the words I had been told, including the potential length of chemotherapy treatment (two years on average), significant lifestyle changes, and high risk of infertiltiy associated with chemotherapy. I instantly felt heartbroken for my future self, with future dreams and plans crushed in that moment.
When I have read other people's experiences of finding out they have cancer, there appears to be a fight or flight trend documented, something I experienced within minutes. People who know me well, know I am (a little) competitive, and so being positive and fighting this with all I have was the only strategy for me. It makes things a lot easier when you have an exceptional support network of friends and family too. I wanted to document this process for myself and for those that were interested in keeping up to date with my treatment, but also importantly to raise awareness of ALL including the symptoms, the importance of giving blood, and how fortunate we are to have the NHS and those that work within it. After a friend of mine kindly offered to put a blog page together I started writing it in the hope of doing that (www.alexisallin.com).
Fast forward five months and I am back home having a break from treatment, and have just received news of a willing donor and admission date for the next stage – a stem cell transplant. I feel extremely fortunate that the hospital has been able to find a non-related donor so quickly, as for some, it is not an easy task. Being registered on the stem cell donor database may result in you giving someone a second chance at life. I'm sure I speak on behalf of everyone affected by blood cancer when I say thank you to those that are on the stem cell donor database, those that have already been a donor, and to those that are signing up.
"I see running as a crucial part of my recovery and something I am in control of"
Since November, I have completed the first two induction phases of treatment for ALL, both 6 weeks stints in hospital, and two one week stays for further chemotherapy treatment. I responded very well to the initial treatment, with the first induction phase putting me in remission, and the remaining treatment keeping me in remission since then. Within this time, I have received 17 blood transfusions and four platelet transfusions. Without those that volunteer to donate, my treatment may not have been such a smooth ride, and so I am extremely grateful to those that do. Unfortunately, I can no longer give blood, but I am happy to report that many of my friends have now signed up to be blood donors, with some already on their second donations.
During my treatment, I have experienced some of the common side effects of chemotherapy; fatigue, hair loss, headaches, change in taste, and a sore mouth. Putting these aside, I have felt relatively OK during my treatment, which I have put down to the approach I have taken and my physical status prior to diagnosis. Additionally, I tried to see the chemotherapy as the cure I needed to overcome this, rather than toxic drugs that would weaken me. I truly feel that being in tune with my body physically and my fitness prior to diagnosis helped me identify something wasn’t right early on, and has meant my body has been strong enough to endure the chemotherapy I have had thus far. If there is a piece of advice I could offer based on my experience, it would be; if you know your body and feel something isn’t right, push to see your GP to get to the bottom of it!
Since leaving the hospital in mid March, after my last round of chemotherapy, I was keen to get some strength and fitness back as soon as possible. Going from exercising six days a week pre-diagnosis, to being isolated to one room for almost 3 months and not eating the healthiest of foods, resulted in significant changes to my body and fitness levels. Not only did I want to feel stronger again, but I wanted to be outdoors, in the fresh air, and so I started with walking, something I knew I could do. My first walk was a four mile route around my favourite lake back home, on a beautiful crisp blue day, I could have stayed there breathing in the fresh air and taking in the view all day. I managed the four mile walk and tried to keep a good pace in an attempt to push my body to work harder than it had in months.
I have always been a keen runner, completing different distances in the past including my biggest challenge to date, the London Marathon in 2012, coincidentally raising funds for the charity Leukaemia Care. Based on my previous running history, I had faith that I would get back to running eventually, but was tentative with how to approach it. A few days after my first walk, I tried a little run but didn't get very far. My body felt alien to me, my legs heavy and not used to the repetitive impact of running, I could tell I had lost muscle mass, and my heart and lungs were working overtime. Some may have been deterred by this, but it spurred me on to get further the next time I tried. I felt more alive than I had in weeks, feeling my heart working hard for the right reasons. Since then, I have been pushing myself in distance and pace. In three weeks, I have progressed from walking to running the four mile route at least three times a week, alongside getting to the gym, and have been feeling stronger each time. I have also taken every opportunity to go on walks with friends, family, and dogs, and even joined in for 10 miles of a 21 mile training walk with friends who are training for the Walk the Walk marathon.
A few people have mentioned that they are surprised I am running and going to the gym between treatments, but I see it as a crucial part of my recovery and something I am in control of. When you are diagnosed with cancer you are reminded how little control you have over life, and how vulnerable you can feel as a patient. Being able to get back running has been like a breath of fresh air after the long hospital stays. I have always believed in the link between a strong body and strong mind, and feel they should go hand in hand when undergoing something that pushes your body to its limits. I know the stem cell transplant will be a tough phase of my treatment and so I want to be in the best physical and mental state in preparation for this.
I think we can sometimes have a misconception of what chemotherapy treatment is like, and how a cancer patient should look/feel or what they should or shouldn't be doing physically. I know I did prior to undergoing the treatment myself. It is so varied from patient to patient and from one cancer to another. How each individual copes will significantly differ, which is so important to remember. I am only doing what feels right for me and what I know I can achieve safely, taking it one step at a time, literally.
One thing I struggled with when in hospital was feeling quite isolated on the ward I was on. I was frequently restricted to my room and so didn’t get to chat with other patients undergoing treatment, and when I was allowed to leave my room I was often the youngest on the ward by at least 20 years, and so felt that I couldn’t relate to them as well as someone closer to my age. That is where I feel organisations like Bpositive are so important, I have been able to connect with others undergoing similar treatments and speak with people closer to my age who have the same concerns as me. It is so important to be able to discuss what you are feeling during a time like this and be able to share emotions and worries with others that truly understand.
I am feeling positive and hopeful for my next phase of treatment, and hope to be able to share my experience of a stem cell transplant. I feel this is a component of the treatment that is not talked about or shared often enough, and so I hope to raise awareness of this particular phase for others.
Finally, I wanted to say a huge thank you to the staff on the Haematology and Acute Oncology ward at Queen Alexandra Hospital. The doctors, nurses, and health workers work tirelessly together as a team to create a warm and caring environment for all patients. I couldn't have asked for better care, thank you!!
Follow Alex's journey on her blog www.alexisallin.com