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Julie was 44 years old, amidst the excitement of Christmas when she began feeling unwell. After a rush to A&E, she was diagnosed with acute lymphoblastic leukaemia (ALL). Here she details her Spot Leukaemia story and the long road to remission…
“Looking back to December 2015, I remember being super excited about putting up my Christmas tree and preparing for the holiday period. On the evening of 4th December, I felt unwell, so I took myself off to bed whilst the rest of our family enjoyed our weekly takeaway. I spent most of Saturday in bed, but I managed to get up and go out to sort out a horse I was responsible for. I then returned to bed, where I stayed until Sunday.
That day, my ex-husband rang to ask me to check on the Sunday roast that was in the oven. However, at this point in the day, I had developed very restless legs. I managed to bum shuffle my way downstairs to check the roast, and all the way back upstairs to run myself a bath – I thought it would make me feel better, but it didn’t. I also became aware that I was bringing up blood, so my ex-husband contacted the hospital and there was a discussion as to whether I should be blue-lighted to the hospital, or whether my ex-husband (who happened to be a nurse) should take me.
I got to the hospital a little after midnight and whilst sitting in the A&E waiting room, I became extremely unwell and was taken in to see the GP immediately, who proceeded to take my bloods. I was there for what seemed like forever, until the GP came back and informed me that I would need a blood transfusion as soon as possible, and that I had no immune system and would need platelets.
I was transferred to a short stay ward and given a blood transfusion and platelets, which consisted of about nine pints of blood. On the Monday morning, I was visited by a haematologist consultant, who informed me I had acute lymphoblastic leukaemia (ALL). I would need a bone marrow biopsy to begin chemotherapy.
I was transferred to the haematology ward, where various consultants came to examine me. It was then I was approached by Dr Hancock, who happened to be the first person to mention a trial chemotherapy. They explained the trial to me and within the day I had begun it, alongside blood and platelet transfusions. I spent Christmas Day waking up in hospital, however, they allowed me to go home for a couple of hours to be with my children. I was in week two of the trial chemotherapy when I began to experience tingling sensations, numbness and spasms in both hands. By week three or four of the trial, I had lost the ability to swallow, caught various infections and was receiving medication and chemotherapy through a PICC line.
Fast forward to March 2016, it was apparent I was having a massive reaction to the trial chemotherapy. I lost all mobility down the left side of my body, and I was being fed through a feeding tube. I had lost so much weight; originally being 11 stone, I plummeted down to six and a half stone. I also lost my hair, which I asked my sister to cut, as I was really struggling to come to terms with everything that was happening to me.
The first questions I asked my consultant when I was diagnosed was “Is this hereditary? Can this be passed down to my children?”. My children have always been there for me and they are my best friends. Thankfully, I was told it could not be passed to them.
Whilst in the BRI, I was asked by the consultant that if my heart failed, would I want it restarted? Of course I did, and at this point my family were called as well as a priest from the chapel came to visit me.
When I was finally able to come back home, I was cared for by my ex-husband. I had a bed downstairs, with a walking aid and commode. I had no ability to move down my left side and the trail chemotherapy had stopped, as a result of the allergic reaction to the two forms of chemotherapy.
Whilst awaiting to see the consultant in St James Hospital, Leeds, I continued to attend Bradford Royal Infirmary, I regularly attended the BRI for blood transfusions, spinal chemotherapy and bone marrow biopsies. On one occasion whilst attending a day case session, I became extremely unwell. It later turned out that I had an infection in my PICC line.
In the end of April/beginning of May 2016, I received a call from a consultant’s personal assistant, who was inviting me in for an appointment to discuss my options, which I attended in June 2016. They explained that I would need a bone marrow transplant, and also explained what would happen if the transplant didn’t work. All I can say is that I left his office feeling like I was going to die. In July 2016, I was admitted to the ward at St James as I had a match for the bone marrow, by this time I was getting my mobility back – having had various physio sessions and my ability to swallow had returned. This was the next phase of getting better.
I had the bone marrow transplant that July; I lost my hair for the second time and was extremely unwell. When I was finally allowed home after a two-month stay, I still had to visit every other day for my bloods checking, and every three months for the next two years I would have to have bone marrow biopsies and spinal chemotherapy. There were a few occasions over the first year where I would have to be admitted due to having a high temperature or infections or even needed a top up of the bone marrow.
I was later referred to a gynaecologist as I was experiencing issues with having sexual intercourse. It came to light that I had graft versus host disease (GvHD) which also affected my mucus membrane, and as a result I had reoccurring chest infections. My gynaecologist carried out a small procedure, but every day is a huge struggle. GvHD has had a huge impact on my self-esteem, confidence and mental health; it has also been one of the contributing factors to my current divorce process that has been instigated by my ex-husband.
Even though I am currently in remission, I often feel as if I am not. Mentally, there is a niggling little person at the back of my head saying, “What if it comes back?” or “What if I can’t form a new relationship and be intimate with the person?”. But, I stand by my motto: What doesn’t kill you makes you stronger.”
Do you know what the six most common signs and symptoms of leukaemia are? They are:
Fatigue
Shortness of breath
Fever or night sweats
Bruising or bleeding
Bone/joint pain
Repeated infections
Are you currently experiencing any of these signs and symptoms? If so, contact your GP and ask for a blood test.
Early diagnosis saves lives
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