The state or fact of continuing to live or exist, typically in spite of an accident, ordeal, or difficult circumstances.
One who suffers.
Over 1,700 days.
114 days of drugs.
16 chemotherapy transfusions.
8 blood transfusions.
70 platelet transfusions.
20 frozen plasma transfusions.
30 fibrinogen transfusions.
576 ATRA tablets.
23 bone marrow aspirates.
700 days of waiting for results.
What does that do to a person?
2014 was busy. International dating, finally getting good at running up mountains, bought my forever beautiful horse Billy. A new role within my company was on the horizon taking me out of my comfort zone, pulling on my brave pants and pushing me into a career I had always dreamed of, finally an opportunity to make a difference.
International dating was getting tiring, running up hills was getting really tough and my body was doing some crazy stuff! Bruises started appearing, I started to pee blood, I’d wake up with infections in various body parts, my mouth was full of blood blisters… but with the reassurance from my GP that a dose of steroids would fix me, I continued to travel and run, and thought it was a great time to start jumping my horse. I look back on those days now with complete fear—what if?
The answer is always the same… I would not be here now.
“I am so sorry Thea, it is cancer.”
What do you do with that? Repeat the apology to those sitting in that small room with you and look at their faces, destroyed by the news that a daughter and a friend has just been told she has a disease that could take her away from them. I still don’t really recall the thought processes I went through other than I needed new pyjamas.
How was I going to tell my employers I wasn’t going to be at work on Monday and oh also a high probability that I may never return to work? In fact, I might die… no I won’t die, I just might, might is better than will.
I look back on the calls I had to make, the hardest thing I’ve ever had to do to other people – telling those that you care and love you have cancer, knowing you are responsible for the impact that this will have on them.
My practice call was to an ex-boyfriend. He was a positive, fun guy who would know what to say to me. He was about to get on a plane. He did get on that plane because I told him to go away, then when he came back, he could then visit me to tell me funny stories about falling off mopeds. I knew but didn’t share that I might not be there to hear the stories.
I kept that to myself and smiled every time someone said, “You are a fighter, of course you will get through this.”
Is now the most curable type of leukaemia; because of medical intervention and treatment protocols, 70-80% of patients survive this disease if treatment is delivered early. Historically, this type of leukaemia had a 0% chance of survival because bleeding could not be controlled.
The challenges facing me: extremely late presentation.
My bone marrow had been taken over by cancer cells that didn’t allow me to clot. I was spontaneously bleeding with only one outcome if my body continued to fail.
Enter the conflict zone: PML RARA v Platelets.
Spoiler alert – I survived.
I became patient number 958833; I am still patient number 958833. I wonder if the number 958833 will ever become something I can’t quite remember.
My focus was on surviving. I couldn’t and wouldn’t lose sight of this. Adapting to a new life and becoming fluent in a new language. Coming face to face with my own premature mortality, only saved by a cocktail of toxic drugs, transfusions and life-saving blood products.
How do you come to terms with that? An unfulfilled life because cancer had the potential to dictate the outcome.
Room 5 on Ward 23, Royal Shrewsbury Hospital, my new home indefinitely. Enveloped, protected, medicated and cared for, sent well wishes from friends, family and distant once upon a times. In response, I took it all in, absorbed it, never processed it but always responded in a usual TW way. The power of a smile.
Hitting the Master Reset button
Being shut down and re-booted four times over a six-month period became the new normal. During this time, I just existed. Nothing prepares you for the post chemo days, my inner voice working so hard to keep me focussed and positive. “Dig deep, you can do this, this time in a few days your mouth won’t hurt so much, by the end of the week your white cell count may have raised above 0, next week you may even be able to reduce the transfusions. Next month you might be able to go home.”
The lines I was attached to giving me the blood support I desperately needed, but as quickly as it was going in, the leukaemia ravaging my body was destroying it.
The treatment wasn’t working – I really wish they would train SpR’s (specialist registrars) to deliver news better. I expressed concerns that I was worried I wasn’t responding to treatment; I remember his response well— “Yes, we are too.” A trained professional should have recognised that as a chink in my armour and asked me if I needed some support. Nope, he shuffled off and left me sat in my bed watching my PICC line delivering a fibrinogen transfusion and some s*** breakfast TV wondering, what is the point? I have had enough. Stage right, enter Julie, my brilliant lady dressed in pink asking if I wanted a cup of tea; she was part of the army of amazing humans that made me feel normal.
Fight, be tough, keep strong, don’t give up. All words written in the cards that adorned my walls. There wasn’t room for self-pity and why me’s. I had to smile, there were too many people counting on me to get them through my disease.
Christmas came and went, New Year’s Day saw me take my first steps out of my room, down 32 steps and out into the big wide world. The big wide world has people coughing in it, runny noses, dirt, infectious people, animals. I panicked and wanted to go back up the 32 steps to my room, safe. I stayed out of my protective bubble for a few hours—the day I had been so looking forward to was such an effort mentally.
A few weeks later I packed my new home into boxes and headed to my mum’s house. This was easier. My friend turned over the ignition, the radio kicked in. I heard the words, “Girl you’re amazing.” Thanks, Bruno Mars, for recognising my special day and singing your song just for me.
The next few months I was treated in and out of hospital depending on where I was in my chemo cycles. Respite was at mum’s. The third was the worst – blue stuff, this one hit me hard and put me back in hospital. I felt destroyed and wanted to give up. Trying to hold on to one day I would get to go home, proper home.
Walking through the door was emotional—I had made it. Survived the cancer and survived the treatment. My chalkboard read, “Welcome home TW”.
I felt exhausted, worn out, ached all over, I was sweating toxic waste, my hair had gone but I was home. This was the first time I took a good look at myself in a mirror. I wasn’t there. It was the first time I sat down and wrote something.
The hardest part was yet to come.
Re-entry and re-identification
My total focus had been on surviving, then all of a sudden, I had achieved it. What now? Overnight my inner scaffolding taken down, no healthcare army, no medication, no routine, nothing! Just quiet and I was alone. I actually found myself fantasising about being sick again. I had been released back into normal society where I was normal, not qualifying as a sick person anymore.
The Invisible Battle
This is where the real challenges of recovery become a struggle. It is a privilege that many don’t get to experience.
- Side effects
- Long-term side effects
I turned 42 in July. At the age of 37 years 4 months 21 days, the reality of the life I had imagined was lost after hearing one sentence.
In February 2020, I hope to hear the words cured. Being cured is where the healing begins.