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I had various symptoms for several months, but I did not seek medical advice for quite some time, as I put my symptoms down to a virus to which I was always prone. My symptoms initially began that October time with feeling tired, headaches, nausea and being sick a lot. I also had hot and cold sweats and felt weak and generally unwell. However, as time went by, instead of feeling better. I was feeling more ill and tired, but I still thought it was a virus and that it would eventually go. I was reluctant therefore to visit my GP, thinking I would be wasting their time and felt embarrassed. Also, as it was coming up to Christmas, I did not want my illness to spoil this very special time of year which both my fiancée Mark and I loved. So, though difficult and often exhausting, we still managed to go shopping and put the decorations and cribs up. Wrapping presents, including presents for our beautiful three cats, was mainly done in bed at various times.
During this time, I worked from home as a Telephone Advisory Nurse operating several different medical helplines. Since becoming ill and being unable to return to the NHS, I still did as many shifts as possible, often feeling so unwell, weak, and sick. I tried not to let my colleagues down with Christmas approaching. In mid-December Mark and I travelled from our home in London to Edinburgh to my niece’s wedding. It was during those few days that the fatigue was almost unbearable, and I was surprised at the intensity of it and did my best to hide my symptoms; I didn’t want to worry my two sisters who had travelled from Ireland. At every opportunity I had to lie down in our hotel room, while Mark kept my sisters’ company in reception over pots of tea, making up excuses like I was washing my hair or something. It was hard not to cry with the tiredness and Mark helped me with everything as I also use a wheelchair. Though everything was beautiful I was so relieved to be back at home where I could rest. Despite everything and often having to have days in bed where I felt too ill to get up, we still managed to enjoy Christmas as best we could.
All my initial symptoms continued but were a lot worse. In the New Year, I developed a new symptom. I was taking down some Christmas decorations when suddenly I felt very severe pain in my right leg. Mark thought I had overdone things and helped me to bed. Over the following days, there was no let-up of this pain, it was so intense I couldn’t move without crying out and I was also being sick more often and felt extremely weak. Sleep was almost impossible as I couldn’t get comfortable or stay in any position for any length of time. I still remember in the middle of the night counting to ten, to try and change my position. I still did not think my symptoms were anything but a virus but with the severity of the pain in my leg, we decided to go and see the GP.
The locum GP gave me an x-ray form as he thought I may have broken my hip or leg. He also gave me some pain medication and a blood test form. We went to our local hospital Whipps Cross where I used to work as a Specialist Nurse and had the x-ray which did not show any breaks. I felt too ill, exhausted and was in too much pain to go to have the blood test. It was another two weeks until I felt able to go and have the blood test and then we went to A/E to see if they could do anything for my severe leg pain. The doctors there thought it might be a clot and gave me a blood-thinning injection, more pain medication and advised me to return the following two days which was the weekend for the injection and have a scan on the Monday.
They did not wait until all my blood tests came back. We got home at 8 pm exhausted but also relieved that I had had the blood tests and seen the doctors as I was concerned about the length of time, I’d been ill and the awful pain that never eased up. I was very surprised when the phone rang at 10 pm that night. It was one of the A/E doctors who had just received an urgent phone call from the laboratory saying my white count was very high. I was told another doctor from another hospital would ring in half an hour. I called Mark and we both felt anxious and surprised. I still did not think I could have leukaemia or any other cancer. Within half an hour, the consultant from St Barts hospital rang, saying my white cell count was abnormally high and to come to the Haematology Day Unit at 9 am the next morning and bring a hospital bag.
Looking back, it all seems strange, especially being a registered nurse with years of experience, that I never associated my symptoms as being serious. I had tried to remain optimistic and naively thought I would soon get better. It may also have subconsciously been a kind of self-protection. We slept little that night and arrived at the Day Unit in the morning and were immediately shown into a single side room, where I was glad to be able to rest on the bed. Very soon I was seen by an extremely nice doctor and had several more blood tests done. She did not delay with telling me my diagnosis was probably one of three things: leukaemia, bone cancer, or a clot which she dismissed. I think I sensed then my diagnosis would be leukaemia. She said she would return as soon as the test results were ready.
It was an anxious wait though upfront, perhaps the doctor was preparing me for the bad news. At 2 pm the same doctor returned with the Haematologist Oncologist Consultant who sat beside me on the bed and introduced herself. Straight away she said, ‘we have looked thoroughly at all your blood tests through the microscope, and you have leukaemia, chronic myeloid leukaemia.’ I did not cry out or never asked ‘why me.’ I asked about my prognosis and was very relieved and hugely grateful that I could be treated with oral chemotherapy medication for life. She said in recent years, huge advances had been made for this type of leukaemia with special drugs called ‘tyrosine kinase inhibitors’ (TKIs). Previously, even with Interferon, the outlook was very poor. She told me I had just missed escalating to acute leukaemia as my blood counts were so high. She gave me literature to read, told me I needed to be admitted and had to start treatment immediately. I would then be entered into the ‘Spirit Two Trial’ and be allocated to Imatinib or Dasatinib. So, having been ill for about four months, I was diagnosed in less than 24 hours and in fact only five hours after being admitted to St Barts hospital on 2nd February 2013.
As soon as the doctors left the room, I looked at Mark who said how sorry he was. I noticed he looked very tired and very shocked as he has ongoing illnesses too, since he had cancer of the spine several years previously. I felt guilty for worrying him so much and gently told him I’d be okay. While waiting to be transferred to the Oncology ward I told him to get a taxi home and I would ring him later. It seemed very surreal to be told I had blood cancer, but it did explain why I’d been feeling so ill for a long time.
I felt very alone on the ward and dreaded having to tell my two sisters, whom I knew would be very shocked. I plucked up the courage the next day to send a text to one sister and ask her to ring me, which she did and then she phoned my other sister and they told me later they had both cried on the phone. I had my first bone marrow biopsy two days after admission, with Mark holding my hand. It was just a formality the doctors said. I found it extremely painful and felt very weak afterwards.
The severe pain in my leg continued and I was given oral morphine, which helped a little. I also had MRI scans to try and find the cause. They showed a bone infarct, a most unusual symptom the Professor said, who had not come across this in a leukaemia patient before. The white count was so high it had cut off some of the blood supply to my leg, which took a long time to heal. The doctors said that without the severe pain in my leg, I would have put off going to the GP even longer. So, in a strange way, I have to be very grateful that the pain led me to seek medical advice, and in the end, a very quick diagnosis.
I commenced on Imatinib a week later and spent 8 days in the hospital. I felt very tired and weak on discharge and obviously worried about the future and if the treatment would work, which I think was only natural to feel that way. However, I tried very hard to remain positive and even though still in severe pain and feeling very unwell, I returned to working on the helplines some weeks later. As a fully qualified counsellor, I worked as a volunteer Bereavement Counsellor once a week but took some time off before returning. I also returned the following year to do my BA degree in Philosophy. Initially, I worried I would be unable to pursue these, but somehow, I managed though often difficult and very tiring.
I had a lot of gastric side effects with the Imatinib but was switched to Nilotinib a year later. I had reached a major molecular response but for the trial, you had to be in complete molecular response. I was also given morphine tablets for the pain. For much of the time I continued to feel fatigued and tired and over the years was often sick, sometimes when in a restaurant but Mark always managed to help and we did not let this stop us from going out. With Marks illnesses and severe back pain and shortness of breath, we helped each other, though at times it was difficult and stressful. However, we greatly valued a day when we could go out, even if it was just for a few hours and enjoyed ourselves.
Medically wise, it’s been quite a rollercoaster since my diagnosis with other illnesses and conditions being diagnosed, including severe respiratory problems and Hypoadrenalism, a medical emergency. Following spinal surgery in February 2019, I developed severe complications, first with a spinal fluid leak, then the next day I was found collapsed on the ward. I was brought to Intensive Care with a chest infection, pneumonia, and respiratory failure type 2. I have a lot of amnesia during that time as I was unconscious for about five days and do not recall becoming ill, which is really scary. I continued on Nilotinib up to about 18 months ago, when I began feeling very unwell for about two to three months. I was very nauseated; the vomiting became more frequent as did the headaches and general malaise. I had no energy and was extremely fatigued and my sleep, never that great, became worse. I eventually rang St Barts 24-hour Emergency Helpline. It was the start of Covid where I was placed in the Clinically Extremely Vulnerable group by the NHS and the hospital. My Haematologist Oncologist Consultant who first diagnosed me has been very supportive and following my phone call, rang me at home and discontinued the Nilotinib. But I developed severe withdrawal symptoms including, some confusion, disorientation, feeling extremely sleepy and having no appetite or energy. I was just able to look after my beautiful cats who laid beside me on the bed and gave me so much comfort and love and continue to follow me everywhere. I had frequent blood tests, every week to two weeks and usually two weekly telephone appointments from my consultant up to now.
When the BCR Abl blood test began to rise so that I was no longer in a molecular response, I was started on a low dose of Bosutinib 200mgs. This caused the liver enzymes to rise very high, so it was stopped for a while. I started back on 100mgs but shortly the liver enzymes began to rise again so it had to be discontinued and it took a long time for the liver inflammation to settle. The BCR ABL was rising very alarmingly, and I was really worried and fearful that I could enter the next stage of CML. It had not been so high since the first year of my diagnosis. Living on my own now, following the sudden loss of Mark just two years ago has been very difficult, but I try hard to continue to be as positive as I can. I still enjoy doing the garden when I have some energy though the fatigue remains difficult to manage. I have now been on Dasatinib 50 mgs for the past three months and apart from a gastric side effect every now and then, I am so far thankfully doing well on this treatment with the last blood results being very positive. I am so very grateful that all through Covid I have been so well looked after by the team and my consultant at St Barts hospital, who is also very good support and help for my other illnesses.
I would also like to thank my two sisters and their families, Consultant Heather, Mary and other close friends, Sarah and Muriel for their invaluable kindness and love. Distance is never far away with a phone call and text and especially since my beloved Mark was taken on Angels Wings, who as an Angel now watches over us all.
I would also like to thank Leukaemia Care for their very informative emails and highlighting through their magazine, other patients’ leukaemia journey helps to make me feel less alone in my unique journey.
I think the Spot Leukaemia campaign is invaluable, more so as it aims to target both the public and health care professionals in raising awareness of the signs and symptoms of leukaemia. It is so worthwhile as the symptoms of leukaemia can easily be mistaken for flu, delaying patients seeking medical advice and perhaps confusing GPs, who may not have come across leukaemia patients before. With the Spot Leukaemia Campaign aiming to target the wider population, highlighting the symptoms including intractable fatigue, the quicker patients are diagnosed, treatment commenced, therefore leading to a more optimal and positive outcome.