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In late August 2015, I started feeling weak and breathless. I remember going out and about in London in the last weekend of August with friends visiting from Italy and not being able to walk for long without feeling extremely tired. The following week I developed high fever and flu-like symptoms. I went to see my GP on Tuesday 1st September 2015, and they told me I had flu and advised me to rest, drink a lot and take paracetamol.
On Thursday 3rd September, my fever was still high and, as I had to start a new job at an estate agency in Wimbledon on that day, I went to see my GP again. This time they prescribed me antibiotics; that helped bring down my fever pretty quickly. I also agreed with my new employer I would start on Monday 7th September.
On Saturday evening, I then had a serious nosebleed. I was quite worried as blood came out of my nose in thick clots, so I called 111 – my GP surgery was closed at that time. They advised me to go to A&E as a “nosebleed can be nothing and everything”. Even though the nosebleed stopped after a while, my husband and I still went to our local hospital, St George’s NHS Trust in Tooting, London, on the same night. The doctor who saw me said most likely my nosebleed was a consequence of the cough linked to the flu. He did not think a blood test was needed, something I now believe would have been very useful and appropriate to spot my leukaemia earlier.
On Monday 7th September 2015, I started my new job as a lettings coordinator at an estate agency in Wimbledon, where I live. I was still feeling weak and tired but thought this was a consequence of the flu and the antibiotics I was still taking.
On Wednesday 9th September, when I arrived home from work, I noticed some unexplained bruises on my right hand and lower limbs. That worried me, but as I was not aware of the symptoms of blood cancer at that time, I did not think of anything really bad. I was also very excited with my new job and did not think of doing some searches on Google.
The following morning, on Thursday 10th September, the bruises were still there and, when brushing my teeth, I saw many red papules inside my mouth. I started thinking something wasn’t quite right but, as I was off on Friday (I was required to work on Saturdays), I decided not to go and see the doctor straight away. I also did not want to take a day off sick after only four days in my new job!
On Friday 11th September, I went to see my GP with my husband at 8am before he went to work; we are lucky as our surgery is just in front of our home in Wimbledon Park. I did not have an appointment, but when I explained my situation to reception, one of the doctors saw me straight away. He asked me lots of questions, carried out a very thorough check and decided to take a blood test himself.
After the visit, my husband went to work and I decided to go to Central London for some shopping, despite the doctor having advised me to rest. That wasn’t really a very wise decision! I did not stay out for long though because after a couple of hours I was feeling extremely tired and decided to go back home. I remember struggling to climb the stairs in my house.
I went to sleep and immediately after lunch I received a call from the GP surgery. They told me my blood levels were very low and wanted to refer me to a haematologist at St George’s Hospital for further investigation. They also asked me to go to the surgery to take the referral letter and, if possible, not to go to the hospital alone. I called my husband and waited for him at the surgery. We went together to St George’s at about 6pm on Friday 11th September. The referral letter from the GP mentioned an Hb count of 64 and a platelet count of 7.
When I arrived at St George’s Hospital, I had a new blood test taken and was visited by a haematologist. After a couple of hours, he told me the results were in line with those of the previous test and I needed blood and platelet transfusions straight away to avoid the risks of internal bleeding. He also said I had many abnormal (he called them “immature”) white cells in my blood and needed to be admitted to the hospital to carry on further tests. I spent the night in Richmond Acute Ward and was moved to Gordon Smith Ward the following day.
I had a bone marrow biopsy on Monday 14th September. On Wednesday 16th September I was given a first, partial response: the lead consultant of the haematology team at St George’s Hospital, Dr Fenella Willis, told my family and I that I had either acute myeloid leukaemia (AML) or a myelodysplastic syndrome (MDS) but needed the complete results of the bone marrow test to diagnose me. I was finally told I had AML on Friday 18th September, seven days after being admitted to the hospital and two weeks since I’d started developing symptoms.
That day Dr Willis told me she had “bad and good news”: the bad news was that it was indeed acute myeloid leukaemia; the good was that it was curable and was associated with a good prognosis because of its particular sub-type, t(8;21) abnormality. She explained I had to start treatment ASAP and they were planning to use high dose chemotherapy as I was healthy and had no other conditions.
I started my treatment on Tuesday 22nd September. In the following six months, I went through four cycles of high dose chemotherapy (cytarabine and daunorubicin) and had to spend three to four weeks in a side room after each cycle to deal with the side effects of becoming neutropenic.
I was lucky as I tolerated chemotherapy well and only occasionally experienced some of the worst side effects normally related to it such as nausea, diarrhoea, mouth ulcers and vomiting. I vomited badly only a couple of nights and had painful mouth ulcers only during the fourth cycle.
I lost my hair after the first cycle but that didn’t really bother me, as I knew it would come back at the end of treatment. Honestly, I did not think losing my hair was a big issue while I was fighting against such a terrible disease! Macmillan Cancer Support offered to produce a nice wig for me but I used it only a few times.
I had a PICC line inserted in my left arm at the beginning of my treatment and received almost daily blood and platelets transfusions across the entire period. I experienced issues especially with the latter; I needed matched platelet transfusions during the whole treatment, as my blood could not retain the generic ones.
As it normally happens, I developed infections during every cycle after becoming neutropenic. I had high fever each time and became increasingly resistant to standard antibiotics, so they had to treat me with stronger ones. During my third cycle, I developed high fever over Christmas and experienced vaginal bleeding, mild nosebleeds and petechiae rash over my right shin. I had to go back again to the hospital for a few days between the third and fourth cycle to treat an episode of influenza A. I experienced the worst infections during my fourth and last cycle. My temperature spiked immediately after becoming neutropenic, I became increasingly fluid overloaded and was given regular diuretics whilst receiving intravenous antibiotics. For the first time after starting treatment, I also developed several painful mouth ulcers.
Ten days after my last dose of chemo, I started experiencing breath shortages and found it increasingly difficult to talk. Chest x-ray findings were consistent with PCP, a particular and very aggressive form of chest infection that is normally seen in immunosuppressed patients. Doctors were quite worried and treated me with oxygen and high dose antibiotics that I had to be given via the PICC line; after taking many medicines every day over the previous five months, I couldn’t swallow pills, especially the big antibiotics. That meant I had to have a second line inserted in my right arm and receive intravenous drugs 24 hours a day for almost a week! This was definitely the worst period of my treatment, also because I knew it was almost over and couldn’t wait to go back home. One night I even thought they were going to transfer me to an intensive care unit because I was completely breathless and had a very high temperature.
After each cycle, I had the opportunity to go home for a couple of weeks. I really enjoyed these short breaks as I could spend some time with my husband and family outside the hospital and do something relatively “normal”. Although I was told to be careful as my immune system was very weak, advice I did not always follow to the letter, to be completely honest! I visited Windsor Castle with my husband and my parents after the first cycle and went to the Royal Albert Hall with them to watch Bloodwise’s Christmas Carols show on 8th December, just two days before starting my third cycle of chemotherapy. That was really a treat!
I spent Christmas and New Year’s Eve in a side room. That was a new and challenging experience for my family and me, but we managed it quite well. My husband set up a nice Christmas tree in my room and added lots of decorations to the walls. Unfortunately, I was not able to enjoy all this on Christmas Day as I had a fever of nearly 39, and my sister, who had just arrived from Italy with her husband to spend Christmas with me, was at A&E with serious issues to her balance system! My husband also organised a mini–party in the room on New Year’s Eve with some yummy treats so we could celebrate together the coming of the New Year, and hope for a better period.
I was very lucky as I received fantastic support throughout the entire period from my family and friends. I never was or felt alone during treatment. My husband visited me for a couple of hours every evening after work on weekdays and spent every weekend in the hospital. He missed only a couple of days across six months because he had work commitments he could not avoid. We watched movies and TV series, listened to music and talked a lot about our future. He also spent some nights in my side room when I was feeling particularly bad, and requested that his company allow him the possibility to work part-time three days per week from December 2015 to March 2016. Nurses at the ward told me I was lucky to have such a dedicated husband!
My parents moved to London from Italy in early October 2015, despite not speaking a word of English, and remained until the 27th December 2015. Unfortunately, they had to go back to Tuscany after Christmas as my father had a heart attack in December while at the hospital and needed to recover from that. Mum and Dad were great: they came to visit me every day in the morning and stayed until late afternoon. They baked cakes, Italian focaccia and cookies and gave them not only to me but to doctors and nurses too. They become very popular in the ward for that!
My sister came up to London from Italy several times and was in contact with me daily on Skype or WhatsApp. She jumped on a flight the day after I was admitted to the hospital in September and did the same when I had pneumonia at the end of my fourth cycle of chemotherapy.
Many UK and Italian friends sent me daily messages and set up WhatsApp groups to stay in contact. Some of them even visited me at the hospital. My former colleagues at the Hammersmith & Fulham CAB, where I had volunteered for some months, sent me a very sweet card with all their signatures.
I genuinely believe the amazing support and love I received during those months helped me stay strong and keep a positive attitude throughout this tough experience. I was alone only during nights. Those were the worst hours for me, especially when I was in the side room. I constantly hoped I could fall asleep quickly and sleep until the morning. Unfortunately, that was not always the case, especially when I had infections and high fever.
Not only my family and friends offered me constant warmth and support, both practical and psychological. Since the very first day I was admitted to St George’s Hospital in September 2016 – and during all the following months – I always felt extremely reassured by the high professionalism, human approach and great commitment showed by doctors and staff. They could not have been more kind, supportive and knowledgeable. They made me feel comfortable, important and gave me their confidence they were going to get me better, so I could go back home to my family and life. Nurses and care assistants were absolutely fantastic, always smiling, happy to give me their time, nothing was too much trouble for them. I simply could not have asked for a more professional, caring team of people. Consultants and doctors diagnosed me in just seven days and always kept my husband and me informed about my leukaemia, the treatment I was going through and the various issues I experienced after becoming neutropenic. It truly was an outstanding service.
At a time when the NHS is often criticised for its shortcomings, I can only thank St George’s Hospital and Gordon Smith Ward for the caring and dedicated support I received that ultimately saved my life.
I completed my fourth cycle of high dose chemotherapy in February 2016 and left St George’s Hospital on 1st March 2016. I am in complete remission since. I have my regular checks every three months now and a venesection each month to bring down my ferritin level, which was extremely high after completing my treatment and is now almost back to normal. I feel well and live a normal life. I know I’m still at risk of relapse for at least another couple of years, but I think positive and don’t let this affect my desire to plan for the future and live life to the fullest.
Being told you have cancer is devastating and destabilising for everyone, so feeling bewildered is absolutely natural. I was shocked when I received my diagnosis and nearly cried, but it’s how you react to this terrible news that can really make a difference, not only to the quality of your life during treatment, but to the effectiveness of the cure itself. This is my advice to anyone who has to face a similar experience:
- Be positive: staying positive is the best way to help yourself. I will never forget what my consultant told me the day she diagnosed me: “Medicines are important, but a positive attitude is essential to make the medicines work.” I always believed I was going to live and never thought even for a moment my treatment was not going to work.
- Trust your doctors: don’t try to cure yourself on the Internet – forget Google! Ask for a second opinion if you want, but then entrust yourself to those who have studied years and definitely know better than you how to tackle these terrible diseases.
- Keep on planning your future: think about cancer as a temporary event in your life, not as your life. Planning your future is the best way to get your body ready to fight. This is as important as treatment.
- Get rid of negative people: take all the support you can get from others but don’t let negative people put you off or suck your energy. You need it to win your war against cancer!
- Never underestimate unexplained signs: if you notice something that doesn’t look quite right on you, go to see your doctor without delay. If you have cancer, an early diagnosis can really make a difference between life and death.
- Last, but not least, never, ever give up: if you believe it, you are stronger than cancer!
My experience with leukaemia and the months spent at St George’s Hospital, interacting with and being cared for by care and medical staff, did not only help me understand the invaluable importance of healthcare professionals’ work, but also pushed me to reconsider my own priorities, and to pursue a new career in care.
I thought a lot about my life while I was going through treatment and discussed several options with my husband, who strongly encouraged me to follow my heart and plan for the future.
I’m an Italian lawyer by training and worked as a criminal lawyer in Italy for more than years before relocating to the UK in 2013. In London I worked as a fundraising team leader and, after achieving an industry qualification in property management, I applied for a job in the property sector. Unfortunately, I was able to work only four days in my new role before being admitted to the hospital in early September 2015.
After going through this tough experience, I decided my new aim in life was to do a job that could enable me to help others and offer vulnerable people the dedicated and caring assistance I received at St George’s Hospital. I know by personal experience how a compassionate and professional care from a good care assistant can make a difference in people’s lives and effectively support the work of nurses and doctors.
I started volunteering at a care home in Wimbledon Park in May 2016 after completing my recovery period, and was offered a care assistant job in August 2016.
I still work in care and genuinely love and am proud of my new role. I know it may sound weird, but I really think my experience with leukaemia gave me the strength and motivation to look into myself and find my true path in life.
In November 2017 I won the Best Newcomer Award at the regional Great London Care Awards 2017. When I was called on stage to collect the award in front of over 500 care professionals from all around London, I remembered my long days in the side room, the bad infections I experienced and the aggressive treatment I had to go through to fight that terrible disease, and thought life can be truly a wonderful thing.
Recently, I was offered a healthcare position at Mary Seacole Ward (specialist ward for elderly rehabilitation) at Queen’s Mary Hospital in Roehampton. This is absolutely amazing as Queen’s Mary Hospital is part of St George’s University Hospitals NHS Foundation Trust, the hospital where I was successfully treated for my AML.
You can imagine how important this is for me. Doing the job I have chosen to do as part of my new path in life in the place that saved me from leukaemia is like closing a circle. I must confess working within the St George’s network has always been my long-term goal since I started thinking about my new career in healthcare while I was going through treatment. But honestly, I was not expecting this to happen so quickly! After winning the Award last year, this is another dream come true.
Sometimes, great things come from very bad ones. As the proverb goes, every cloud has a silver lining. You just need to see the glass half full rather than half empty even in the darkest moments and never give up hope. Like everything really important, my experience with leukaemia is not only negative. It helped me understand what I really wanted to do and start a new, rewarding career. It also motivated my husband to become a regular blood donor and join the Bone Marrow Registry.
I feel happier and more at ease with myself now and I am definitely stronger. I enjoy what life brings and I have learnt to put things into perspective. I am a survivor and I know I can face every challenge and fight back as I did with cancer.