Janine Black

Janine was diagnosed with acute myeloid leukaemia (AML) just two days before her 55th birthday. She didn’t know then that she would spend her birthday, Christmas, and New Years in the hospital where she previously worked. Here, Janine tells her story.

I first noticed I was slightly breathless in mid-September 2019, and visited the doctor on October 19 and again on November 19. I was diagnosed with AML on 21 November 2019, two days before my 55th birthday. I didn’t know then that I would spend my Birthday, Christmas and New Year in St James’s hospital, my previous workplace.

My symptoms consisted of breathlessness and sore gums initially, then a flu-like illness and dry cough. I developed lumps under my armpits. I was given antibiotics and sent for a chest X-ray which was clear. I then visited the doctor a second time as the cough persisted and my breathlessness was getting worse. This doctor organised an ECG and blood tests for the following week. Climbing stairs became very difficult and I would fall asleep as soon as I got home from work. My colleagues noticed that I was pale and losing weight. I had lost my appetite too.  After a particularly bad coughing fit, I developed a large black floater in my right eye. My optometrist colleague discovered that I had Roth’s spots in my eyes; unusual haemorrhages with white centres. As these haemorrhages occur in acute anaemia and leukaemia, my colleague sent an urgent referral to the GP. Two days later I had my blood tests.

I am an optometrist and have worked for many years in the hospital eye service and independent practice. One of the most rewarding, but sometimes distressing aspects of the job is detecting pathology in the eye; many systemic diseases have eye signs.

In September 2019, I took my daughter Hannah to Croatia for her last holiday before starting university. I noticed that I was struggling walking up the hills and resolved to get fitter when I returned home. Back in Leeds, I found my usual exercise classes harder and harder to do; I was becoming more and more breathless. In October I developed flu-like symptoms and a dry cough. Lumps appeared under my armpits and so I decided to visit the GP. He gave me antibiotics and sent me for a chest X-ray which came back clear. I continued to work, but found climbing the stairs more and more difficult. I would fall asleep as soon as I got home from work and my appetite diminished. I put my symptoms down to Empty Nest Syndrome and being a ‘woman of a certain age’.

By November my work colleagues urged me to go back to the doctor as they noticed that I was losing weight and looked pale. The second GP gave me a thorough examination and found that I had a racing heart and high blood pressure. She arranged blood tests and an ECG for the following week. That weekend I had a very violent coughing fit after which I developed a large black floater in my right eye. This can be a sign of a retinal detachment so I asked my colleague Vicky to examine me. There was no sign of a retinal tear, but Vicky noticed some unusual haemorrhages with white centres. She recognised these as Roth’s spots, a sign of very low oxygen. We both looked in the ophthalmology textbook and the word LEUKAEMIA stood out on the page. Vicky wrote an urgent referral to my GP and I had my blood tests 2 days later. My worst fears were confirmed when an out of hours doctor rang at 11 pm to tell me that the results were abnormal. I asked him if I had cancer and he admitted that I had 80% blasts and a haemoglobin level of 50. He asked me to pack a case as a bed was waiting for me at St James’s. I remember feeling so alone as I stood with my case outside the ambulance; Hannah was in Nottingham and my family were all in Lancashire.

I was admitted in the early hours and a registrar examined me alongside a trainee doctor. The registrar asked me ’how much do you know? and I blurted out ‘have I got leukaemia? ’. She confirmed that I did and I needed 3 units of blood straight away. All I could think of was my daughter Hannah, I had brought her up alone since she was 18 months old and we were extremely close. She had worked so hard to secure a place at Veterinary School and had only been at university for 6 weeks.

The next morning, I was taken down to surgery to have my Hickman line fitted and later that afternoon went to the eye department for an eye examination. It was strange to be a patient in my old workplace, but my former colleagues were there and came to chat with me. The consultant assured me that the haemorrhages would resolve with my leukaemia treatment. My sister came over from Lancashire to visit and my brother-in-law took charge of ringing my family and friends with my diagnosis. I was receiving lots of birthday messages which I was finding hard to answer. Hannah arrived from Nottingham and talked about quitting her course, but I was determined that she should continue.

Unfortunately, the Hickman Line was immediately infected on insertion and so I had to fight sepsis for 2 weeks before my chemotherapy could begin. It was stressful thinking that the leukaemia cells were multiplying, but it was deemed too unsafe to go ahead with the treatment. I had intravenous antibiotics for a month followed by oral antibiotics. Fortunately, I tolerated the chemotherapy fairly well and was pleased to find out that I had gone into remission after the first round.

The second round was far harder mentally as I think the enormity of the diagnosis hit me. I developed toothache which kept me from sleeping and then went into a downward spiral of anxiety and despair. I couldn’t imagine having to cope with the toothache until my neutrophils came up 3 weeks later. The doctors and nurses kept telling me how well I was doing as I hadn’t developed any infections, meantime I was having very dark thoughts.

Hannah found it very distressing to see me like this, I had never been mentally ill before. My sister, an experienced nurse insisted that I see a psychiatrist, and also receive more support. A psychiatrist visited and duly prescribed lorazepam initially and then sertraline. This was in February 2020, just prior to the take-off of the Covid pandemic. I think the mental health toll of the enforced isolation is often overlooked by the doctors and I was very grateful for the support of the Leukaemia Care nurse and the hospital chaplains. On my day of discharge, I finally had my tooth refilled at the Dental Hospital.

After the second round, there was no disease in the peripheral blood and so the consultant thought I may not need a stem cell transplant. The original plan was for 4 rounds of chemotherapy, but by then it was the height of the pandemic so the consultant was unsure whether there would be enough staff available to treat me. I was one of the lucky ones as they decided to treat only potentially curable leukaemia cases. They decided I would have one more round of chemotherapy. At this point, my daughter came home from university and we shielded together. She had to drive me to the hospital daily for neutropenic monitoring and sit in the multi-storey car park revising for her first-year exams. As the Covid 19 figures kept rising, my neutrophils were plummeting. Hannah and I both became more and more anxious until the day came that I had to be admitted. I hugged Hannah not knowing whether I would see her again.

I managed to cope quite well with this third hospital stay despite having no visitors and very limited contact with the doctors and nurses. I don’t know how I would have coped without visitors and psychological support during the first 2 cycles, and pity any patient diagnosed during the pandemic. I had bought an Ipad and this was a lifesaver, keeping me entertained and in contact with family and friends by FaceTime. It also psychologically helped to know everyone else was in lockdown.

I was delighted to discover that I was in full haematological remission by June 2020, but at the back of my mind, I was worried about recurrence. I contacted Leukaemia Care for funding for counselling for myself and Hannah and also applied for a buddy. I wrote an article for the Optician magazine to highlight the Spot Leukaemia campaign, to make optometrists more aware of leukaemia symptoms. I also tried to get as fit as I could; I did a lot of walking and online yoga and ballet to strengthen my legs. I felt that I needed to give something back for my treatment and so completed the 300-mile London to Paris virtual cycle ride to raise money for Blood Cancer UK. I persuaded my boss to join in so we could raise more funds together.

I went back to work in May this year, but 6 weeks later received the dreaded phone call telling me that I was MRD positive. I have since received 2 rounds of Azacitidine injections and venetoclax tablets. This is a more gentle and targeted chemotherapy and has the great advantage of no hospital stays. I am now back in remission and currently awaiting a stem cell transplant. I have been very grateful to Leukaemia Care for their support groups, informative webinars and funding for counselling. My buddy, Jude a stem cell transplant survivor, is also invaluable support, to help me through this next stage of treatment.

I think the Spot Leukaemia campaign is important as it is vital to educate GPs, optometrists, dentists and pharmacists of the vague symptoms. Most optometrists know about haemorrhages in blood cancers, but don’t know the patient symptoms.

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