Back in April 2015 I was diagnosed with an aggressive form of leukaemia and after months of gruelling hospital treatment, and numerous complications, my body went into remission.
Great news, right?
Sadly, as I was quick to find out, remission is not as good as it sounds; remission does not mean that you are cured; remission does not mean that you are out of the woods - not for leukaemia patients like me with high relapse rates and depressing statistics. For me there is no guarantee of long-term remission or survival, so I find myself in a very precarious position indeed.
Acutely aware of my own mortality, I have felt the utter heart-rending despair and guilt at the pain my young daughter would have to endure if my leukaemia relapses. Dealing with the fallout attached to this has been challenging and has meant that I’ve had to forge a new life because I no longer belong in the life I was living before. However, on the plus side many patients don’t even achieve remission so I am grateful for every single day I am here and know that I am incredibly lucky. Remission has given me the confidence to live the life I believe in. This phrase, “Life if a gift that should be used wisely and lived fiercely” puts into words the way I want to live my life.
Remission has made me profoundly aware that life simply doesn’t go on forever; there is an end date and actually that can be a lot sooner than any of us like to think. At first I didn’t know whether to laugh or cry; whether to celebrate the end of my brutal treatment, allowing me to finally come home and put my life back together, or to break down at the thought that at any moment I could be rushed back into hospital because of relapse. Many times fellow patients who have also been in remission have been given the devastating news that I dread. Being told that you have cancer once and fighting through takes every last fibre of your strength, yet to have to face it again must be… well I don’t even have the words to express it. Personally, I only just got though the treatment literally crawling away from it on my knees, unable to see to my basic needs.
In a world with so many scientific and medical advancements this is a stark reminder that human life is still very fragile and can be taken at any moment. It’s a reminder that we are still very much in the hands of fate and sometimes even medical intervention can fail, that if this happens there really is nothing else to save you - and that is a truly terrifying feeling.
Not long after I’d finished treatment I wrote this: “Remission is like constantly running from an assassin, always looking over your shoulder... never feeling safe.”
I often liken myself to Jason Bourne, not least because my appearance dramatically changed thanks to the intense chemotherapy, so I can sneak around undetected. My old life was stolen from me overnight and I was thrown into this very strange, dangerous world where nothing made any sense; I was lost, alone and vulnerable. Only for me my enemy was my own body, it had turned against me - after years of being my ally it went over to the dark side, the worst possible betrayal. Though unlike Jason Bourne I’d had no SAS style training and certainly didn’t have any useful skills sets at my disposal. Nor did I have a stunt double, film crew or entourage to make sure I could go back to my old life when filming was over. Not me, I was just a woman feeling like a little girl afraid of the monster hiding under her bed.
Constantly fighting an undertow of fear and sadness that threatens to drag me under its cover and keep me there, I have come to the conclusion that acceptance is the key to my future peace of mind and happiness. As each day passes I am better at accepting that the fear is here to stay, as a reminder to grab every opportunity, not to wait for the right time to make my move, and it has been wonderfully enlightening and liberating. Remission has made me a life addict… who wants to use the second chance I’ve been gifted to support the fighters, admire the survivors and honour the taken
How It Feels is ongoing blogs project, which aims to shine a light on people’s stories, covering subjects where voices are rarely heard. If you want to get involved, please email firstname.lastname@example.org