Sue Newland: my story

My diagnosis

While on holiday in October 2020, I started feeling totally exhausted and just wanted to sleep. I assumed I’d been doing too much at work. Then, in November a pin-prick rash appeared across my back and shoulders. I left it for a week or so, hoping it would disappear. When it didn’t, I visited my doctor who prescribed steroids. It calmed down after a month and I thought nothing of it. In early January, I had a funny, dizzy spell at work. I ended up off sick for two days and when I called the doctor, I was advised I’d probably been overdoing things.

A few weeks later, I woke up and got up to use the bathroom. My head started spinning in a horrific motion, worse than being on a waltzer ride, and I had to cling to the furniture to get back to bed. I had never been someone who took time off sick. But the next couple of weeks were odd. One day I’d feel vaguely OK, just tired. But the next, I’d have the most horrific pain in my spine and shoulder blades, needing help to get out of bed. Eventually, I phoned the doctor. By this point, I’d been vomiting for 24 hours on top of all the other issues and looked as white as a sheet. He advised me to go to A&E. It was Friday 12th February 2021. Following various tests, I was discharged and told to return at 9am on Monday.  

Early on the Monday afternoon, I was called into the haematology consultant’s office and told that he suspected I had leukaemia. My immediate response was: “OK, so what happens now?”  I was admitted straight away to the very hospital in which my dad had worked for almost 40 years in the pathology department. 

Treatment

After three nights I was discharged but told I would need a bone marrow aspiration at Addenbrookes Hospital, this happened the following morning. I was dreading this, but actually with some gas and air, it was fine. I was released and phoned my daughter to pick me up. But by the time she’d driven out of the car park, I’d had a phonecall to say that I needed to be admitted immediately.

I was mentally fine, but my daughter was very upset. My one-year-old grandson was in the car, so I told her to put her big girl knickers on, drive carefully and go and pack me a case. I sat in the HDU all day, watching TV.  When my daughter, her partner and grandsons delivered my case in the late afternoon, I said my goodbyes to them outside, not realising how long I’d be in for and obviously there were no visitors allowed at that time due to Covid 

I was allocated a bed in a lively mixed oncology ward. My room had seven ladies in it, and to be honest, it was quite a giggle in there. I was able to remain upbeat the whole way through my hospital stays. Resting was unheard of for me, but I was fine lying in a bed or sitting in a chair, watching TV and chatting. I had always led an active life. I remember walking to the toilet one day, in the days leading up to the start of my treatment, and a consultant standing in the corridor with a group of students saying, “Ah everybody, this is Susan, the wellest, illest leukaemia patient I’ve ever met! ” I took this as a compliment.  

I opted to undergo the AML19 trial after speaking with my Dad who had lots of knowledge in this area. My first round started with about 26 rounds of 3 different chemos over ten days. Day one and two were fine. Then it hit me with a bang on day three. I was moved into isolation and given a catheter, not realising this meant I wouldn’t be able to walk. The next four weeks are a bit of a blur: lots of sleeping and horrendous temperature spikes to the point that I ended up in intensive care for a few days. After a couple of weeks, my hair felt like straw, full of sweat and awful, so the clippers came out and off it went. It was an amazing feeling, a relief. I didn’t care that I had no hair. In fact, I video-called my brother and asked if he wanted to play eggheads! I Facetimed my five-year-old grandson and told him I’d put my head out of the window and my hair had blown off. At the time, he giggled, but I found out later that he had sobbed after the call. 

After about three weeks in isolation, I was moved back to the oncology ward. I would need my temperature spikes to stop for 24 hours before I could go home. I had to get out of bed daily and sit in a chair. I had a walking frame but was so weak, I felt like I’d collapse! Physiotherapy visited and gave me exercises. I had no idea how unconditioned I’d become. Finally, after nearly six weeks, I was told that if I could walk up one step, I’d be discharged. The task was tough but I just about did it!  

In late March, I was finally allowed home! A nurse lifted my case onto my bed as I was too weak to do it. I sat and packed, so excited to be leaving. I was helped into a wheelchair and taken down to reception. When my daughter pulled up, I just sobbed and sobbed, happy tears. The nurses cried, the security guard cheered and I hobbled into the car! It was overwhelming!  My mum greeted me at home. They had made me a downstairs bedroom in the dining room, with a patio door to see the garden. This became my home for several months as I was too weak to go upstairs. 

I was back at hospital several times a week for blood tests, transfusions, you name it. I had several rounds of chemo administered at home via a pump attached to my PIC line. And one round in hospital, started on my 54th birthday: 29th May! In between all this, I had a few other spells in hospital due to infections, each lasting around a week.  

Living with leukaemia

The great news that I was in remission came in August 2021. I’d had so many procedures by then – PIC lines, blood and platelet transfusions, MRIs, ultrasounds, X-rays, a catheter, food tube and numerous bone marrow procedures with added gas and air!  None had hurt and they didn’t phase me. I continued with monthly bone marrow and blood tests for a few months, which then reduced to quarterly.  

I spent 2022 regaining my strength, increasing dog walks and enjoying every second of life. By Christmas, I felt good, almost back to normal. I still get tired but I know my limits. If I need to have a nap, I do! I joined a fitness club this year and it’s done me the world of good. I’m physically stronger than I’ve ever been and feel fantastic mentally. I was told at the beginning that, had I left it another 3-4 weeks, the outcome would have been a very different story. It’s been a long journey, but a positive mindset is so important. Life is a gift, so enjoy every little detail.  I’m now completing my bucket list!