Alyson was 42 years old when she began feeling overly fatigued and suffered from aches and pains in her joints which led her to book a GP appointment. After multiple bone marrow biopsies, Alyson’s myelodysplastic syndromes (MDS) diagnosis was confirmed. Here, she tells her Spot Leukaemia story…
“In 2012, I began to feel very tired, had no energy and aches and pains in my joints. However, due to my lupus diagnosis a few years prior, I thought this was the reason behind my symptoms.
I went on sick leave as I was unable to function due to fatigue, achy joints and sleeping a lot. I was having blood transfusions every couple of weeks – sometimes weekly even. I had a bone marrow biopsy in July, and later in August, I was contacted by my GP close to when my family and I were going on holiday. He asked me to go and see him, and he had written a letter for me to take away on holiday in case I became unwell. He put his hand on my back and said that he believed I might have a blood cancer of some kind.
On my arrival home, I had to have my bloods taken again to check for my haemoglobin levels. My GP rang to tell me my levels and dropped further to around six, and he had called the hospital. They were expecting me the next day for a blood transfusion and a referral to the haematology team.
After a short stay in the hospital having three blood transfusions, I was then put under the care of the haematology team. Some months later, I had a further two bone marrow biopsies and in November, I was called to the hospital and told that I had myelodysplastic syndromes (MDS), but it would be treated as acute myeloid leukaemia (AML).
Two weeks after being given the news, I was admitted to Cheltenham Hospital. A Groshong line was inserted on that first and I started a course of aggressive chemotherapy the day after. I asked my dad if he would shave my head for me before I began to lose my hair; I didn’t like the idea of waking up and seeing clumps of hair on the pillow. We made a thing of it and my family were with me at the time taking photos as we laughed together. I looked good bald, and I was often told I had a lovely-shaped head.
I suffered terribly with episodes of sickness and some diarrhoea, but the worst was the unexpected rigors and I was unaware I would have them! But, five weeks later on the 30th of December 2012, I was finally allowed home.
Exactly a month later, I was then admitted to the Bristol Royal Hospital for Children to start my conditioning journey. My Groshong line was removed as it was blocked, and I had a PICC line inserted which remained in place for nine months. I was in isolation, having four days of chemotherapy, a day of rest and then a further 4 days of total body irradiation (TRI) that happened twice daily.
In February, I had a double stem cell transplant. I remained in isolation for a period of time, as I kept getting graft versus host disease (GvHD). But finally, I was discharged to the flat, as Bristol had provided accommodation to people and families who live a distance from the hospital. I visited the hospital daily for blood tests and observation tests. I was back in hospital about three or four times due to GvHD. However, by the end of April, I was discharged and allowed to go home.
For the next two years after my transplant, I had to be on a clean diet. After being discharged, I was also given an inhaler that would prevent lung diseases, whilst almost having to have a few blood and platelet transfusions.
I am now nine years in remission and I have yearly blood tests and consultations. However, I have been left with thrombocytopenia, chronic fatigue, early menopause, and cataracts. Due to the stem cell transplant, I have also developed mild eczema and a nut allergy, just like the donor.
I wish someone told me what I might expect when having chemotherapy. I knew I would lose my hair (and I lost mine twice), but I didn’t expect to lose all of my bodily hair too. The rigors were terrifying and something I would not like to experience again. I have since suffered muscle wastage and episodes of collapsing for a short period of time, but I also experienced some longer late effects such as chemo brain.
It wasn’t until I had finished my treatment and was given the ‘you’re in remission’ did I really struggle. I suffered from depression and anxiety, and as if I no longer had a purpose – I just didn’t want to be here anymore. I talked to a therapist and felt like they didn’t understand; I mean how could they? They hadn’t had to go through what I had. I felt as if I had come off a train journey and was left on a platform with no direction.
My children weren’t allowed to visit me when I was in Bristol, as visitors had to be 12 and over. My daughter had just started secondary school when I was diagnosed. She had no support from her school which resulted in her having counselling. I am thankful she is now doing well. I am forever grateful to the Gloucester-based support group Charlies, and I honestly think I wouldn’t be here without them.
People should be more educated on the signs and symptoms of leukaemia. Not everybody has the same symptoms, and some do not have any, but people should know what to look out for.”
Alyson’s symptoms of leukaemia were:
Are you currently dealing with similar symptoms to Alyson’s? If so, contact your GP and ask for a blood test.
Early diagnosis saves lives.