Sarah Goodyear

Just two days before Sarah’s 33rd birthday, she was diagnosed with acute myeloid leukaemia. Less than a year since her diagnosis, Sarah is now in remission. Here, she talks about her symptoms and treatment during a global pandemic.

The main symptom that prompted me to call the doctor was being out of breath – I had tried to walk around the block and had to stop after about one minute of walking. My fitness had steadily worsened in the few weeks before, but I had put it down to lockdown fatigue and not going out much.

I’d had a few other ailments that I hadn’t really thought about too much, but in reality, they were all connected. I googled “breathlessness” and the NHS page on acute myeloid leukaemia (AML) popped up. I noticed that I actually had quite a few of the other symptoms such as infections that weren’t healing, bruises, little red dots on my skin and bleeding gums.

It took me a little while to actually call the doctor and arrange a phone appointment, but I would probably say that I had been feeling “not quite right” for a couple of weeks.

The doctor just said that I could go for some blood tests and they would check my heart function as well; it was a very quick conversation, and I went for blood tests that afternoon.

That night, my sister called me for a chat, as my mum had told her I was feeling a little down. We joked about my feeling poorly – “It’s probably high blood pressure but I’ve convinced myself it’s leukaemia” – and I went to bed.

My life changed forever on the 9th June. I was jolted awake at 3am by my doorbell ringing. My phone had been off, but I turned it on, and it started ringing. I answered it to hear a doctor telling me he was outside the building because I hadn’t answered my phone, and as my blood tests indicated leukaemia, I needed to go to hospital immediately. I didn’t believe him; it felt like a dream.

After hysterically calling my parents, my dad took me to the Lister Hospital in Stevenage where I underwent various tests and transfusions. I wasn’t allowed anyone with me due to COVID-19, so it was a lonely and scary morning.

Later in the day I was transferred by ambulance to the Haematology ward at UCLH, and was told I would be there for a couple of weeks. One of the doctors came to chat, and he explained what the next steps would be – they would wait to see what the bone marrow biopsy results revealed, but treatment would likely last six months and I would probably start chemotherapy tomorrow or the day after. I asked if I was going to die, and was told no – it was treatable, curable and I was going to be fine. Looking back at it, I wonder if he really knew that. I said ‘good’, as I had a cat to look after at home. I asked when I could go back to work, and he said that I have 35 more years of work ahead of me – I didn’t need to worry about six months off.

Once the results came back from my bone marrow biopsy to say that I had Inversion 16 – the “good” sort of AML, my treatment plan was to stay in hospital for a month for the first cycle and then go into Ambulatory Care for the following three. It was both surreal and terrifying, but at times I felt strangely calm. Once the doctor had told me I wasn’t going to die, I felt like I just had to get on with things and not complain as I had it easier than others. Looking back at it, this wasn’t a good way to look at the situation, and I should have let myself accept the fact that I actually had cancer and I was allowed to be upset.

The first month was the strangest month of my life, especially as it was my birthday two days after being admitted, but my nurses were amazing and made it really special. I tolerated chemotherapy reasonably well, but still suffered many of the typical side effects including losing my hair. I wasn’t allowed to go outside or have any visitors, so it was an extremely difficult month.

Finally, my blood counts recovered and I was allowed to go home, although it was only for two weeks before my next cycle of treatment began. My next three cycles followed the same pattern – have chemotherapy in Ambulatory Care at the Macmillan Cancer Centre, steadily feel worse as it kicks in, get an infection leading to a lot of pain, be admitted into hospital again. Luckily, each hospital stay was only about two weeks, but it often felt like the longest two weeks ever as I would be in considerable pain and discomfort for a lot of the time. Each cycle would also end with a bone marrow biopsy, which is one of the worst things in the world. It was only when I cried at one of the doctors that I found out that it was possible to have gas and air – I found it very strange that no one had told me sooner.

Finally, my fourth cycle came to an end, and I was allowed home in the middle of November 2020. I responded very well to the treatment and I have been in remission since the beginning of December. Inversion 16 is known as one of the better sorts of AML (as it responds well to chemotherapy and I believe has a lower chance of relapse), but I would like to point out that all cancer is horrible!

I realised that I knew nothing about leukaemia at the beginning, and thought that it was something that typically children got. And whilst it’s more common in older people, it’s really important that young people also know the signs. If you’re concerned, don’t be afraid to contact your doctor.

I would like to thank all the staff at UCLH for their amazing care during what was an extremely difficult time for everyone working in the NHS.

#myCNSmatters

We're saying thank you for the invaluable role that Clinical Nurse Specialists (CNS) have in a leukaemia patient's journey. We want CNSs to know that they matter to patients, to charities and to other healthcare professionals.

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