That first blood test in 2015 was a bit of a fluke from generally just feeling a bit run down. My GP looked at the results and told me that a few things were just below normal but it was likely from an infection. Two tests later and the GP said they would refer me to haematology as things weren't picking up.

After a Google search (we all do it) I asked the GP if I should be worried, her response of "let's see what haematology have to say" was not overly comforting! At my first haematology appointment, they told me they weren’t concerned and would see me in a few months. That's when I had my first taste of watch and wait.  

In 2016 I had three monthly appointments with my counts falling each time - enough to now warrant an explanation. A bone marrow biopsy was ordered and I was informed they had not found any cancers and my marrow looked normal. I worked in care homes my whole adult life, so conversations about hepatitis and HIV came up. I think this is where I first experienced real fear. But again all, the test results were negative. This is where the comments from friends about that being good news started. Yes, it is good news - but it's still NO news. "No news is good news" has never given me any peace or comfort, I want to know everything! Why am I ill?  What is causing it? I consider myself a patient person but I was struggling to keep waiting.  

2017. In one of my, now routine, reviews I was told they were checking something a specialist had suggested: "but it’s likely negative as it's very rare". A little while later, I got a call asking me to come in and discuss my test, I’d stopped asking what the tests were for by this point as I would read up on everything and worry! But this time I was informed that I had PNH. It made sense but, on more research, I kept seeing aplastic anaemia mentioned and this really seemed to fit, but when I asked about it I was told "No it wouldn’t be aplastic anaemia." I was referred down to Cardiff to see a PNH specialist and have yet more tests, I went in with pancytopenia and PNH and came out with the likelihood of heading towards AA and PNH clone. 

Diagnosis

2018 came and now, under Cardiff’s care and another biopsy, I was finally given the official AA diagnosis. After so many tests, I was relieved I was finally being taken seriously. They were discussing treatment and I felt like a weight had been lifted, until I got into my car to go home. I was texting my sister when it hit me that I officially have bone marrow failure. I'd had years of waiting, "things have dropped a little, but we’ll see you again in 3 months." The worry and confusion: Why are doctors just watching and waiting for me to get worse? it made no sense to me! Fix me now!? 

By 2018 I was starting to feel the effects of low HB and the bruises started appearing more easily. The discussions of treatments were something I’d wanted for so long but as a single mum to two energetic boys, living away from most of my family, the anxiety of a 2–3-week hospital stay, and financial worry, all hit hard. The juggling appointments around work, school runs, having a blood transfusion but needing to get back in time for the children was overwhelming and lonely. 

Asking for help

My anxiety and need to control everything spiralled at this point so I asked my GP for help. I was referred for counselling and this was the best thing I have ever done, she was fantastic! I was becoming obsessed with my numbers on my test results, I couldn’t sleep on the days leading up to doctor's reviews and I started having panic attacks. 

Through watch and wait I felt like everything was out of my control, people kept telling me not to worry. The only real place I felt I could rant, ask silly questions and have my anxiety understood was with The Aplastic Anaemia Trust, they truly were my lifeline before, during and after treatment.  

So here we are now in 2021, three years post-ATG, I’m feeling good, on Ciclosporin but stable and still slowly improving too. Aplastic anaemia no longer takes over everything! 

I am however working for the AAT as an outreach coordinator and feel so passionately about helping others feel supported in all parts of their journey. I want people to know: its ok to need help, but you must reach out and tell people. Get in touch with us at [email protected]