Venessa Taylor

My diagnosis

“It all sort of began in November 2015 when I began feeling quite exhausted. Initially, the exhaustion wasn’t constant; it kept coming and going and then became almost constant with different degrees of exhaustion. Eventually, I would describe it as complete and utter fatigue.

I was an assistant headteacher in a primary school, and usually during the second part of the autumn term teachers often come down with ‘undiagnosed’ bugs, coughs, colds etc. So, this is what I thought I had. Work was busy and school was gearing up for an inspection. The local authority was coming in and keeping us on our toes. As a senior leader, there was lots to do and, although I wasn’t feeling great, I had to be at work—I wanted to be at work.

There was a day when our School Improvement Partner (SIP) was in and wanted a tour of the school and all the classrooms. The headteacher Steve and I escorted her around to each class where we observed some lessons, looked at books and answered questions, but I could barely cope. I struggled to move around the rooms and couldn’t engage in any of the conversations. Every room we went into I needed to sit down or lean against a wall. I don’t know what she thought of me, but my boss Steve told me to go to the doctors. I said I’d go later but he told me to go now. I went home and rang my GP, who told me to ring back in the morning and get an on the day appointment. I was relieved because I had no energy to go anywhere but to bed.

The next morning, I felt slightly better and went to see my GP. I told her how I was feeling, and she gave me a full check up and took my bloods. She told me I had lost a bit of weight which I was pleased about because I’d been working out a lot. Earlier in the year my brother had been told he had high cholesterol and needed a complete lifestyle change. My brother and I are very close, so I decided to support him. I stopped eating meat, changed my diet and we began running and swimming four or five times a week. I was in the best shape of my life, or so I thought. We even took part in the Swimathon with my three daughters where between us we swam 200 lengths to raise money for charity. So, although I’d had some weight loss, I’d put it down to this. My GP had also said that some of the glands in my neck were raised, which I hadn’t noticed and didn’t think much of. I did have a stiff neck but at the time I put this down to the swimming I’d been doing. After my appointment I went back to work.

That evening, someone from the haematology team at Homerton Hospital called me to ask me a few questions because they were concerned about my blood test results. They said my white cells were a bit high but thought I might have glandular fever. They said that they’d be in touch in a few weeks as they wanted me to repeat the blood tests. While I waited to hear from them, which was about four weeks, I mostly felt fine.

Looking back, one of the things that kept coming up was my weight loss—people kept commenting and I kept saying I was in training—but there was an occasion when my clothes fit so badly that I mentioned it to a work colleague. Her response was, ‘But you look good, girl! I wish I could lose weight’, then she asked me what size I was. When I said I’m usually a ten… saying it out loud shook me a bit because I shouldn’t be smaller than that; I’m 5ft 9 and haven’t been less than a size ten since I was in my twenties. However, the fatigue came and went, and life went on. I continued going to work and training; I couldn’t let work down and I didn’t want to let my brother down.

In December, just before Christmas, I was sent an appointment to visit the hospital for a blood test. A week later, the results came back and I was told everything was back to normal – I was fine. I went home and had a lovely Christmas with my family. I felt fine and continued to train.

In February 2016, it all started again. I can remember on one occasion, it was a Sunday and I couldn’t get out of bed, I literally couldn’t get up, so stayed in bed. I just thought I’d been out the day before at a sporting event with my daughter and it had been cold and I’d been sitting all day, so this was the effect of that. The fatigue was bad, but I continued to go to work and try to get on with things. It was my boss who again told me to go to the doctors. I suppose he knew what I was like and I wasn’t my usual self. At home I didn’t really complain much, I don’t like to worry my family so didn’t complain, just went home and flaked out. I made an appointment and went back to my GP; they did another blood test in the morning but this time when I went home, I was too exhausted to do anything else. This was February 12th, 2016.

That same evening the hospital called me and asked me to come in. They said I should bring an overnight bag because I might have to stay in as they needed to do further investigation due to my white blood cell count presenting as 103. I think by now I was relieved that they were going to take a proper look at me because I knew that this type of fatigue and breathlessness wasn’t okay and maybe something was up. I never in a million years thought it would be this.

I called my best friend Emma and told her what was going on. She came and took me to the hospital and waited for me to be admitted. That evening my partner, oldest daughters and some other family members packed out the hospital ward all shocked and concerned as to why I’d been admitted, because at this point, we hadn’t been told anything. Later that night once everyone had left, I spoke to the ward sister who happened to be the daughter of a very good friend of mine and asked her what was going on, what she knew. She didn’t want to say but I pressed her for some answers, and she whispered to me that they thought it was leukaemia. I honestly do not remember my response to what she said.

The next morning at around 6am, I called my friend Emma and asked her to come to the hospital; she was there in what seemed like minutes. I don’t remember if I told her what was said the night before, but I assume I did. At around 7am, a consultant and her junior doctor came to see me. All I remember about that time was the consultant holding and rubbing my hand and I think she asked me if I understood what she had just said. I do remember my response to her and her junior doctor, which was, ‘You make a good-looking team,’—what that had to do with anything I don’t know. I had just been diagnosed with acute lymphoblastic leukaemia (ALL). My recollection for the rest of that day is pretty vague. Either myself or probably Emma called my family. I cannot remember telling my children and family my diagnosis, but I could see the shock, devastation and fear on their faces. Later that evening I was transferred to St Bartholomew’s Hospital in London where I spent the next six weeks in isolation. Neither myself, my family or my friends knew what had hit us. At this time my youngest daughter was seven years old and all I could think about was her.”

Treatment

“I was told almost immediately that I would need a stem cell transplant to survive, but I didn’t even know what that was. I was immediately introduced to my specialist nurse Fillipa, who was amazing, and my consultant Heather Oakervee, who I have been lucky enough to see throughout, who both explained my diagnosis and my treatment plan. Again, I must admit I didn’t really listen, I just somehow blocked out all discussions about what was going on. I’m lucky that someone from my family was always there advocating and listening for me. My treatment started immediately. I agreed to be put on a trial called UKALL14 which commenced on February 17^th, which is when the first phase of my treatment began with steroids, chemotherapy and lots of other meds. I had my first bone marrow biopsy, which didn’t go very well. It was extremely painful, and the junior doctor did not manage to complete the procedure, so it needed to be done again. I also had my first intrathecal which is where chemotherapy is inserted into your spine and sent up to circulate the brain as leukaemia has a way of hiding there.

My family and I were completely shell shocked. My two eldest daughters literally moved into my hospital room, taking it in turns to stay with me overnight. Although things were always explained to us and I had to sign consent for treatments, I wasn’t really taking it in or paying real attention, I was just going along with it. To be honest, although I accepted the treatment, I was convinced the hospital had got it wrong and that they’d got the wrong person, that I didn’t really have leukaemia, and even today a part of me still wonders. The most difficult part of being in hospital was being separated from my family, especially my youngest daughter and my two young grandsons. Due to my risk of infection, I ‘lived’ in a sterile room in isolation and children under twelve were not allowed to visit. My daughters decided to create a wall of encouragement and inspiration for me. They covered one of the walls in my room with photos of my family and friends, paintings and drawings from the children and positive quotes. I went to bed looking at my wall and woke up looking at my wall, it gave me strength, but I needed to see my little ones. The ward decided to turn a blind eye to them coming in from time to time as long as they were well.

The donor registers were searched for a matching donor for me, but none was found. I have fourteen siblings who were all tested—four of them came back as fifty percent matches and the others nothing, but I was told my donor would need to be as close to a 100% match as possible.”

Reaching remission

“Fortunately, I went into remission in May 2017 after my first chemotherapy treatment of rituximab in April 2017. The registers were still being searched for a match as leukaemia has a habit of returning, but no donor match was found. I was told the registers would be searched every three months in the hope of finding me a match. We were also told that because of my ethnicity the chances of finding a donor were less than 20%. This of course was not good enough for my family, so my eldest daughters reached out to DKMS and ACLT charities for help to find me a donor. There was a huge social media campaign, articles were written about me in the Metro and in the teaching unions teacher magazine, and several drives were put on in my name to try and find a donor to save my life. A donor was never found. Because of this I was given a further two years of chemotherapy where the result would be as if I had had a stem cell transplant.

From diagnosis till now has been over three years and I thank God that I am still here. I have had thirteen bone marrow biopsies to check for leukaemia and they have all come back minimal residual disease (MRD) negative, which means I am still in remission.

Not all of my treatments have gone well. One of my chemo treatments was intrathecal methotrexate. Soon after this treatment, I was admitted into hospital with confusion which was thought to be methotrexate toxicity. I became confused, not knowing my name or how to feed myself. It was a bit like checking out of life for a while but still being alive. My family were terrified for me. I also had a bad reaction to another intrathecal procedure, where the ‘vein’ that the chemotherapy travels through was punctured by the needle and the chemo leaked out. I suffered excruciating headaches for about a week, and I was eventually taken to The Royal London Hospital where I was given a blood patch to seal the hole. The specialist at The Royal London suggested that a different type of needle should be used for me, which Barts Hospital took on and now they use it for all their patients for this procedure. I also had constant neutropenia, which is where my neutrophils were dangerously low, leaving me with increased susceptibility to infections and causing me to have long stays in hospital, usually around six or seven weeks each time they dropped really low. I am still neutropenic but not as vulnerable as I am no longer on chemotherapy.

The negative effects of chemotherapy and other treatments have been horrendous and long lasting. I am told that, due to the amount and length of time I was on chemotherapy, these side effects could take years to leave my body, if they do. However, I am still alive.”

Life beyond leukaemia

“I am a mother and a grandmother and that is what is most important to me, and not being around for them is what I feared the most. My family is what has given me strength, courage and determination. The support I received from my family and friends has been remarkable. When I was in hospital, I had visitors every single day and for that I am grateful. The medical staff at Barts, particularly the teams on the 5th and 7th floors, are everything you need the people working to save your life to be, simply wonderful and to them I am also grateful.

I have been medically retired from work and my life has been changed forever. But I feel well and wake up every day feeling grateful.

Today I work with a few leukaemia charities trying to raise vital funds and spread awareness of leukaemia and the need for more people to register as potential lifesaving stem cell donors. Now I am helping to raise awareness of the signs and symptoms of leukaemia by supporting Leukaemia Care with the Spot Leukaemia campaign.

I was told in no uncertain terms that I would need a stem cell transplant to survive. As none was found, I was given an additional two years of chemotherapy. I was diagnosed on February 12th, 2016 and after my first dose of chemotherapy, in May 2016 I was told I was in remission. Today I am treatment free and still in remission.

Leukaemia and cancer in general are not commonly recognised as a disease that affects people of colour. This is mainly because visual campaigns, posters, etc. usually show patients and their families as being white. I think for this reason, myself and my family and friends would never have thought of leukaemia as a possibility for me when I became unwell.”