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In November 2014, my Dad was diagnosed with myelodysplastic syndromes (MDS) from a routine blood test that he had, as he was type-2 diabetic. He didn’t have any symptoms at all, so it was quite a shock, especially as he was a very active man. He received chemotherapy for the MDS during 2015 and this seem to work for him, as in November 2015 his blood results were near perfect and his consultant said no more chemo was needed. However, in February 2016, he didn’t feel well and went to the doctors for a blood test. This led to his being admitted to hospital and he was diagnosed with acute myeloid leukaemia (AML). Just 13 weeks later, my dad passed away with my mum, sister and myself by his side. He was a young 77-year old.
In October 2016, my sister, mum and I went on a cruise for a week; it had been a stressful year! During this trip, my mum developed a cough, which she did every year so we weren’t overly concerned, but she also had shortness of breath occasionally. She went to the doctors mid-October and had tests for asthma, which they diagnosed her with. As she used the preventer inhaler every morning, the breathlessness soon disappeared and she felt great. During the asthma tests, her doctor had also run some blood tests, and on 20th January 2017, aged 72, she was suddenly diagnosed with AML.
We couldn't take it in, and I still can't. The same consultant told both parents this devastating news. Straight away they said my mum was an ideal candidate for intensive chemotherapy. She was admitted to hospital five days later.
My mum was amazing; she went into hospital with such a positive attitude. I believe because she didn’t feel ill at the time she was diagnosed she was determined she could beat this. She had one round of 7+3 and was in hospital for three weeks while her blood counts recovered. Thankfully, she went straight into remission. It was decided she would have one more round of intensive chemo and again she coped really well and didn’t have any side effects. I think losing her hair was the hardest part for her, and the boredom of being in hospital for three weeks each time.
When her blood counts returned to normal range after the second round of chemo, she had another bone marrow biopsy, and was still in remission. My mum signed up to the oral azacitidine trial, which is a chemo tablet, to hopefully keep her in remission. She takes chemo tablets every day for two weeks, then she has two weeks off. This stage of her treatment has affected her more as she suffers with nausea and aching joints and just not feeling herself while she is taking the tablets. She has blood tests every two weeks and bone marrow biopsies every three months. The care and treatment she is receiving is just amazing.
My mum doesn’t have the strength and energy that she had before treatment. Her nurses are confident that she will get back to her old self, but it can take months to recover from the intensive chemotherapy. She does have days where she feels down but it doesn’t last long.
I think it’s definitely good to talk about what you’re going through. I spoke to my mum’s nurses, her consultant, and now her trial nurse. As much as some of the nurses told me not to use Google, I did. There are so many positive stories out there. My biggest fear was would she stay in remission with chemo only treatment? And people do; I wouldn’t have known that if I hadn’t researched it. We now take each day as it comes and don’t think too far into the future.
I didn’t cope well at all in those first few weeks. I quit my job as I was determined to be there for my mum 100%. I’ve also got three young children and just wanted to be there for them. It was only eight months after they lost their granddad, I just couldn’t believe my family were going through this again. I admit I did find it hard to be positive at first, as AML had taken my dad’s life in 13 weeks.
It was my mum who helped me through this time, and having my sister there. My husband and three children have stopped me from breaking down most days. But definitely overall, it has been my mum’s positivity; she walked into hospital singing, “I will survive”. The nurses on the ward were absolutely amazing and I was forever asking questions about treatment and blood levels.
It’s been eight months since she was diagnosed and for seven months she has been in remission. She is doing so well and I am very thankful for that. I’m definitely feeling more positive about things now, but I still can't actually describe what AML has done to my family without ending up in tears. It took my Dad from us, but it certainly isn't taking mum without a fight.