I was first diagnosed with Acute Myeloid Leukaemia (AML) in January 2014, after my GP finally requested blood tests to find answers to my tiredness, lethargy and unexplained mouth sores. He had, up until this point, been treating me for an iron deficiency. I, on the other hand, had put my symptoms down to my age and work. I had turned 50 a few months before and had a busy, stressful job as a deputy head of a large primary school.
Once the blood test was done, things seemed to happen very fast. A quick-thinking on-call GP woke me up at 3am one Saturday morning having seen my blood results. It wasn’t long after that I received my diagnosis. I remember spending that weekend in a daze, keeping myself indoors, reading too much information on the Internet and fearing the worst. I felt confused and angry, so many questions: Why me? What is AML? What happens next? Is it terminal? What do I tell my family and friends? Who will do my husband Stewart’s washing?
On the Monday, Stewart and I went into school to tell the head teacher, a very good friend of mine, and someone who was to play an important part in my recovery thanks to her regular visits. I went into hospital that same day and treatment started the following one. I had four cycles of chemotherapy over the next six months, two induction and two consolidation. The last session was in June 2014. During the majority of that time I was known as the 'star patient', having made good progress with no serious complications.
Despite my good response to treatment I repeatedly asked myself why I was the unlucky one. Then I would remember my mantra, keep smiling, and the positive mental attitude my husband was instilling in me. I read about young children suffering from leukaemia and realised that, actually I wasn't doing too badly. As far as AML went, I was fortunate that I was responding well to the treatment and that I was still alive. I wrote to my family, friends and colleagues and asked to hear their everyday news, however trivial it might seem. I just wanted life to continue as normal as possible. At the end of the treatment I was told I wouldn’t need another bone marrow biopsy. I'd won! I had a great autumn and even managed to achieve my goal of returning to work in the December. At last, normality.
"My husband reminded me on several occasions that this journey was ‘merely a chapter in the story of my life, and each treatment a paragraph’."
Then the nightmare began again. After a routine blood test at my GP surgery, in preparation for my bi-monthly check-up, I received an alarming call at 8pm that from the consultant at Blackburn Hospital. She said she needed to see me the following day. My appointment with her wasn't meant to be until the following week. I knew by her tone and the sense of urgency that the dreaded AML was back. Stewart immediately rang my headteacher to tell her I wouldn't be in the next day as, this time, I couldn't bring myself to talk to her. After a brief return to routine, my happiness was shattered and my dreams suddenly broken.
We instantly knew what we were facing and decided to attack it head on. In fact, I just wanted to start the treatment as soon as possible and have it done with. We knew I would need two rounds of chemotherapy but this time, a bone marrow transplant was probably my best, if not only, chance of survival. One of my sisters said to see it as a blip in my life, that two years was a small percentage in my, by now, 51 years. And my husband reminded me on several occasions that this journey was ‘merely a chapter in the story of my life, and each treatment a paragraph’.
The first round of chemotherapy was a nightmare. I suffered a nasty chest infection and ended up in hospital for six weeks. I felt down at times, questioning my diagnosis, wondering if the doctors had made a mistake. I found myself envious of all the people my own age and older who seemed to be sailing through life healthy and problem-free.
Luckily for me a donor was found quickly but then it fell through a week before the transplant was due. I was, however, fortunate enough to have two others lined up. The transplant took place at Manchester Royal Infirmary in June 2015. It was a joyous occasion and the first day of the rest of my life. I went from having a blood group of B positive to A positive overnight thanks to my donor, who I’m now in regular contact with.
The aftermath of the transplant itself floored me more than I expected. For about two months afterwards I had no energy and no appetite. As I was eating very little, I lost weight and my energy levels were depleted. I felt totally inadequate and useless. A normal ten-minute walk around the block with my dog felt like a marathon run. Even watching TV tired me out. I felt so lifeless I thought I would never get better. I remember turning a corner when my sister cooked me a simple but tasty chicken broth, just like my mum used to make. Little by little my energy levels started to return. So much so, that three months after transplant I was able to scale the heights of nearby Pendle Hill. My appetite came back gradually but it took about six months to feel what I would call ‘normal’. Now I eat more fresh produce than previously, the 'forbidden foods' I craved following the post-transplant diet of cooked food. And eerything has so much more of a taste than it did before.
Throughout my journey, I have been so fortunate to have a supportive, understanding family and, above all, a very patient husband who fully understands the situation. He’s been my counsellor and rock the whole way through. With our mantra, we have faced the challenge together and, subsequently I have never felt alone. Behind the scenes it has been hard on the family. My husband worked full-time and then had to make the hour-long journey to and from the hospital in all weathers. The relapse also affected my stepson's marks at university, something he's since worked hard to rectify and is now reaping the rewards. He too has been such a rock; a wise head on young shoulders.
During my treatment, including the lead up to my transplant, I tried to keep myself active. At the Blackpool Victoria hospital, I made use of the location, going out for at least 30 minutes' walk each day in the nearby parks. Even on the days I felt low I tried to at least walk up and down the ward corridor a few times. It kept my legs going! In Manchester, I was confined to my room but kept myself busy with the use of an exercise bike, practising daily yoga, and dancing to music on the radio! At home I would go out walking each day. On the original transplant date I was instead out walking the Settle Loop, quite an arduous, hilly 12-mile hike.
At my worst, things were really bad; hair loss, lack of appetite, shakes, high temperatures. Forcing myself to eat was one of the hardest things. It became such a chore, but deep down I knew I had to do it. I kept an online and video diary, which I found frustrating at times depending on my low moods, with the intention of one day using the material to help others going through the same situation.
"In Manchester, I was confined to my room but kept myself busy with the use of an exercise bike, practising daily yoga, and dancing to music on the radio!"
I have learnt so much about blood counts and find it so interesting learning what goes on in my body. I always ask questions and take notes at my appointments. I would advise people to write things down, and if you can, take someone with you to appointments, though I appreciate that isn’t always possible. Keep track of what treatment you require and its frequency as even nurses’ make mistakes. I was able to alert mine to an error in the timing of a chemotherapy treatment during one hospital stay. I also found that making friends with all the staff helped my progress. Genuinely, the more pleasant you are to others, the nicer they will be back to you.
An important aid in my recovery has been my border terrier, Ozzy. He's two-years-old now. We were originally going to wait until retirement before getting a dog but, with me being off work long term, it seemed like a good idea to bring it forward. It's because of Ozzy I get myself out each day, rain or shine, doing my body and wellbeing the world of good. Even on wet days we are out walking. I really believe keeping fit has been so important.
One other goal of mine was to complete the 'Pendle Pub Walk' this June, which raises funds for the local hospice. It will be a particularly poignant occasion for me as I've been unable to do it for the last two years. I shall dedicate my walk to all those I met in hospital whose outcome wasn't as successful as my own.
"This journey has felt like entering a tunnel, facing only darkness, seeing a light of hope and striving to get out the other side."
I now have hospital appointments every three weeks. At my most recent appointment my consultant recommended ECP (extra corporeal phototheresis), a light therapy, to help with a common side effect of the treatment – skin GVHD. Mine is taking longer to clear up than expected. It means having another line inserted to facilitate the blood flow, but as my husband commented it’s better than red itchy skin.
This journey has felt like entering a tunnel, facing only darkness, seeing a light of hope and striving to get out the other side. It isn't over yet, but the future is very bright and positive. I appreciate and value every moment I have, I feel my condition (I don't like to call it an illness) has brought my husband and I even closer than before. He is my rock and my inspiration to achieve my dreams. Without him this journey would have been so much harder. Going back to work was my original target but I'm now coming round to the idea that there may be another path for me in this life – helping those less fortunate than myself.
Be Positive! (or, in my case now, A positive)