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2015 started out amazingly well. We became a family of four when our second baby was born on the 18th February. We settled into life as a foursome and were completely smitten with our new addition. Life was good.
In March, however, my grandad was diagnosed with terminal lung cancer. This hit our family hard and we were devastated.
As we all tried to get our heads around this news, I started to suffer with episodes of crippling pain in my chest. With my grandad’s recent diagnosis, I was really worried that this pain was being caused by something more sinister as I had noticed that I was losing some weight. But none of the health professionals I went to see suggested anything worrisome, so I tried to relax a little.
On the 26th June, we saw the news that there had been a terrorist attack in the Tunisian resort of Sousse. Panic set in, as my husband’s grandfather was on holiday in Sousse with his partner. On 28th June we were given the news that John and Eileen were sadly two of the 38 people who needlessly lost their lives. Trying to cope with this news was incredibly difficult and was further compounded when my dear grandad passed away on 2nd August. When I had yet another episode of pain not long after, I figured that it was all down to stress. Stress would also explain the weight loss, wouldn’t it?
After another episode of pain, I booked an appointment with my GP. I was referred for further tests and was diagnosed with gallstones. Finally, I knew what was causing all this pain! My GP referred me to a surgeon and we booked in surgery to remove my gallbladder.
On Friday 16th October, I went to the hospital for my pre-admissions assessment. Here, they checked my medical history, took urine and blood samples and did an ECG. I was now ready for surgery.
On 20th October, I received two calls from the hospital to say that my white blood cell count was high and that I had a urine infection. I needed to go in to have another blood test and pick up a prescription for antibiotics, but I could go ahead with the surgery.
An hour or so later, my phone rang yet again. The doctor on the phone introduced himself and told me that he had been passed my blood results and that they were looking abnormal. He was cancelling my surgery and needed to see me that afternoon. Knowing that my white blood cell count was high, I imagined the worst, but nothing could prepare me for the answer to my question, ‘can I ask what it is you’re looking for?’, ‘yes, I’m afraid it looks like leukaemia’. In that moment, panic hit me like a truck. My first thought was, ‘my children, I can’t leave my children’.
A few hours later, I met the doctor and he noted down my medical history, took seven tubes of blood and examined my spleen, skin and eyes. He said that he hadn’t seen anything to cause alarm, but with a white blood cell count of 78, we would have to wait until the blood results came back the next day. After the longest 24 hours of my life, Dr Sternberg called me to say that although they still had to wait for the PCR test to come back, he was almost positive that I had chronic myeloid leukaemia (CML). We had to wait for the PCR to come back before we could start any treatment.
On 2nd November, I was back in Dr Sternberg’s office with Dan and my mum and dad and he gave me the official diagnosis of CML. He gave me lots of information about CML and imatinib – the drug I would now be taking for the rest of my life – and answered the many questions that we all had. I walked out of the hospital feeling a lot more positive than I had two weeks before, but I was still so scared about what the future would hold.
After just a week on imatinib, I was in A&E with a raging temperature and feeling utterly dreadful. Blood tests were showing an infection, but it wasn’t clear where the infection was. After two nights in hospital and a course of IV antibiotics, I was discharged – but not before having my first bone marrow biopsy. I found this procedure so painful and was dreading having to have any more going forward.
After only two weeks it looked like imatinib was doing its job. My white blood cell count reduced dramatically and I was experiencing numerous side effects. Bone and muscle pain and fatigue were the most prominent side effects to begin with. Migraine headaches and hair thinning started shortly after. In the following weeks and months, I was prescribed Amitriptyline for the migraines and Sertraline for depression and anxiety.
It’s been almost a year since diagnosis, and I am now in a much more positive place. My PCR results at diagnosis were 182% and at nine months post diagnosis are 0.89%. I am still suffering most of the side effects of imatinib, but I have now learnt how to live alongside them. I still find it difficult to deal with the loss of my former self – I can’t be as active with my children anymore as it causes fatigue and muscle aches and pains – and with the loss of what could have been – Dan didn’t want us to think about any more children because of the risks involved. But, I know I have so much to live for and so much to fight for. I may not be able to bounce around on a trampoline with my children anymore, but there is the hope and the possibility of a future with my children and for that I consider myself incredibly lucky.