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‘What do I pack for leukaemia?’ That is the question I asked my parents as I told them the life-changing news that I had blood cancer. What I didn’t vocalise was my biggest fear: ‘What if I don’t come back?’
Of course, I did come back and eight years since my diagnosis I am in full remission and enjoying a wonderful and healthy life.
The first indication that something wasn’t quite right was when I was on holiday over Christmas and New Year 2005. Deep bruises appeared after a gentle leg and foot massage. Then during my first attempt at scuba diving, I couldn’t breathe in properly, which transpired to be a sign that my blood wasn’t oxygenating correctly. In addition, I was constantly tired.
Almost immediately on my return I began the process of moving house, so I explained away the tiredness to this stressful event. Meanwhile, the bruises continued to emerge from nowhere, leaving almost black, finger-like imprints on my legs.
With my house move complete I arranged to see a doctor to discuss my symptoms. The GP casually brushed off the marks as knocks and bumps from the move. A blood test was nevertheless arranged but over the following weekend, there were more serious signs such as almost constant bleeding from the mouth and the bruises were all over my body.
An emergency appointment was arranged with the senior doctor at the practice who said he would carry out another blood test. The word leukaemia was mentioned in passing, but regarded as ‘highly unlikely’.
Just a day later I returned from work to hear a voicemail message that would change my life forever. My doctor was waiting for me to call to break the news that leukaemic cells had been detected and I was being admitted immediately to Barnet General. The short but anxious drive was truly a journey into the unknown.
It wasn’t until the following morning after hourly plasma transfusions to keep me going that my consultant, Dr Andres Virchis, came to deliver his diagnosis.
My kind was acute promyelocytic leukaemia (APML). This was confirmed with a bone marrow biopsy. This hero of the haematology world was careful but candid in his description of treatment and chances of recovery. The good news was that the introduction of a wonder drug called ATRA (All-Trans Retinoic Acid) alongside heavy doses of chemotherapy, meant my chances of complete remission were very good and it was unlikely I would need a bone marrow transplant. The less positive news was that treatment would be intensive and require almost constant hospitalisation, over six to eight months.
Less than 24-hours later, my chemo had started. I’d had my Hickman line inserted into my chest. This was one of the few occasions for tears as fear of the unknown and panic threatened to overwhelm me. Strangely, throughout my illness I rarely cried or allowed myself to wallow in self-pity. Rather than think ‘why me’ it was more of a case of ‘why not me?’.
My hair was rapidly falling out. Taking matters into my own hands, I asked my hairdressing friend to do his worst with some clippers. As heartbroken as I was to lose my long hair, I kept telling myself and anyone else who would listen that this was my ‘getting better’ look, rather than my ‘cancer victim’ one.
My APML had been diagnosed just in time so it was a bit of a race against the clock to get my treatment moving. Neutropenia was almost immediate, requiring all visitors to gown and glove up, and just when I needed a hug, physical contact was strictly banned.
In between treatment cycles, I was allowed home for a couple of weeks. Long walks in my local park, spending time in my lovely new house and being with family and friends were almost as important in my recovery as the treatment.
On the day I went back into Barnet for the second cycle, I got the amazing news that I had gone into initial remission. The ATRA had done its job, but I would still require the three other cycles, ensuring remission was permanent.
Cycles three and four were much tougher and longer. With stronger chemo drugs being introduced, side effects included ulcers from my mouth down to my stomach, making swallowing and eating unbearably painful. The neutropenia dragged on for months as my bloods stubbornly refused to return to normal so I was a prisoner in my room.
Finally, after seven long months where I’d completely surrendered my body and independence to the haematology team, I was told that I was well enough to go home permanently.
Mixed in with the excitement and joy was fear. Would the leukaemia come back? Was I one of the lucky ones or one of the unfortunate few that would require further treatment?
With no psychological support staff, no leaflets on the ward, no internet access in my hospital room and barely a mobile signal, finding out information about my illness was virtually impossible. This lack of knowledge was by far the hardest part of my illness.
Once back at home and online, I was delighted to discover Leukaemia CARE, and what they could offer in terms of emotional and practical support. It was a relief to know that there were people to talk to if I needed it. So, I trained to volunteer as a ‘listening ear’ for Leukaemia CARE to support anyone going through a similar situation.
For the next three years, I continued having bone marrow biopsies and tests and in late 2009 I was given the marvellous news that the bone marrow biopsies were no longer necessary. But the true moment of glory was in September 2011 when Dr. Virchis took huge pleasure in wishing me a final goodbye. I was one of his team’s many success stories and now free to shout about my official ‘release’.
Mixed in with the joy there has been sadness. Anna was a young woman being treated for acute lymphoblastic leukaemia (ALL) at Barnet at the same time as myself. Along with one other girl, Samantha, who had non-Hodgkin lymphoma (NHL), we became a close-knit trio, guiding each other through the ups and downs of hospital life.
As Sam and I celebrated our five year anniversary, Anna told us the shocking news that she had relapsed – this time with NHL. Despite putting up a brave fight for a second time, Anna lost her life on Valentine’s Day 2012.
My diagnosis and illness was a catalyst for changes that needed to be made in my life. I discovered the joy in simple things, developed perspective and learnt that saying ‘no’ sometimes is just as important as saying ‘yes’. Most of all, it’s about telling those that you love just how much they matter as we never know when the opportunity to do so may go away.