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Ellie’s story

Ellie from Berkshire
I was diagnosed with Waldenstrom's macroglobulinaemia in February 2020, aged 39. At the time, enjoying juggling family life as a busy wife and mum to two young daughters, aged 6 and 3, as well as having recently returned to work in a sales support role.  

I first noticed things weren’t quite right with my health in the period leading up to Christmas 2019, when I began to experience sporadic bouts of breathlessness, fatigue and generally feeling unwell. Being a keen runner and usually fit and well, I initially put my symptoms down to a bug of some kind, but found myself going back and forth to my doctor as my symptoms persisted and worsened.

Finally, in early January, my GP arranged for blood tests to be taken, which resulted in a telephone call that same day with the news that I required an urgent iron infusion at our local hospital. Further tests that evening whilst in hospital also discovered I had an enlarged spleen. I was immediately prescribed iron tablets and informed that further tests would need to be arranged urgently, to rule out any underlying conditions, including leukemia.  

A whirlwind of further tests including a bone marrow biopsy were quickly arranged and just three weeks from the date of my initial blood test, I was given the news that I had Waldenstrom’s macroglobulinaemia.

Receiving the news that I had cancer, let alone a type I had never heard of, and in a rather abrupt manner, was devastating to say the least, and it was at this point, I felt my world begin to fall apart. I was given minimal information which included a few general cancer leaflets and booklets, but nothing specific to tell me more about Waldenstrom's. As the consultant wasn’t a WM specialist, he thankfully recommended I should urgently be referred to see Dr Shirley D’Sa, at UCLH in London.

Meeting Dr D’Sa was a huge relief. Her calm and positive manner helped reassure me that I was being seen in the right place, enabling me to better understand my diagnosis, the treatment options available to me and when and how this would all take place. Unfortunately, owing to the COVID-19 pandemic and subsequent lockdown, it was decided that it would not be safe to start treatment immediately, but rather to wait a few months and continue to have my bloods reviewed locally, which thankfully are remaining stable.

Regular check in calls with Dr D’Sa’s team have taken place over lockdown and I am now waiting to start the Rainbow trial as soon as it is deemed safe enough to do so. 

Dealing with my diagnosis during a pandemic and subsequent lockdown has been incredibly tough. Being classed as “extremely vulnerable” drove home the seriousness of my condition and the constant negative messaging from the press and elsewhere did little to help my already fragile state of mind - the psychological impact still leaves me at times feeling incredibly anxious and distressed. Trying to manage my own emotions as well as adjusting our family to life shielding at home, with the girls unable to attend their familiar school and nursery settings or see friends and family was challenging to say the least. It was also at this point that I made the difficult decision to leave my job which I was just settling into and enjoying.  

Dealing with other people’s reactions and emotions since my diagnosis has been extremely hard to cope with. Thankfully, through WMUK I have been able to find invaluable information and support through their website, regular e-newsletter updates and social media channels, which all specifically relate to Waldenstrom’s macroglobulinaemia here in the UK. Through their closed Facebook community support group, I have also been able to find a wonderful group of people who not only understand my situation, but are always ready and willing to offer friendly advice, guidance and reassurance regarding any concerns or worries that I, or my family might have.

The day-to-day challenges of living with a rare cancer that no-one seems to have heard of, let alone pronounce, has had an overwhelming effect on our lives. But the reassurance that I am being treated in a WM specialist centre, with access to invaluable support through WMUK helps hugely.

I try to remind myself and others that whilst I do have a rare cancer, to think of it more as a disorder or chronic condition that I’m more likely to die with than of, and that I fully intend to live my best life, albeit with WM!


Date published: September 2020