Elena Gratton: Why I’m telling my #SpotLeukaemia story

A leukaemia diagnosis will come as a shock to anyone, especially when you find out yours is an incredibly rare form. How do you navigate life from here? Elena shares her experience.

Plasma cell leukaemia (PCL) is a rare and aggressive variant of multiple myeloma. It is estimated that one in a million, or fewer, will be diagnosed with PCL in a year. I happened to be one of those people. 

Over the span of a couple of months, I began to feel like things were going wrong. I had various infections and joint pains – one week it would be my shoulder the next it would be my hip. I started to make excuses for my symptoms; as a night shift worker as an ITU nurse who then came home to an energetic two year old, it made sense as to why I was feeling so exhausted or why random bruising began to appear. 

The Saturday before my diagnosis, my husband Ben, my son and I went for a walk at our local lake. I remember focusing on putting one step in front of the other, just to get me to the end of the walk. Every park bench looked so appealing as if they were almost calling my name. Why was I feeling like this? A 30 year old should not be needing a rest that is twice as long as the walk. It became clear that something was wrong, so I booked a GP appointment. 

I had my bloods taken, and on that same day as I was driving to pick my son up, I was told I had leukaemia and the local hospital were expecting me.

I parked up outside my home, and I sat still; paralyzed by shock. My husband arrived home and saw me still sitting in the car.  I told him to pick up our son and I would tell him the news inside. I had no intention of telling him outside, with what felt like an audience of passing pedestrians.

I cried and hugged him tight as I delivered the devastating news. And then, with a snap of the fingers, we went into organisation mode so I could get to the hospital as soon as possible. 

On admittance, I had a bone marrow biopsy that led to the official diagnosis of PCL a few weeks later. It took a while to finally start my treatment; a few bank holidays meant there was some difficulty getting a chemotherapy regime in order. Once we began, it felt impossible to get a good rest; the constant hustle and bustle of being on a ward combined with the steroids meant sleep was next to none. 

I began to lose my hair on my second round of chemotherapy; I hated the thought of it falling out bit by bit so I asked my husband to bring clippers in. Ben braved the first cut, right through the middle. It was the hardest thing I have ever had to do. I think it was the hardest thing Ben has had to do, too.

Shaving my head was me taking back the power, but it did also feel incredibly overwhelming. I did go on to get lots of compliments for my bald head, and I rocked it most of the time as turbans and wigs were just too uncomfortable!

Throughout my treatment, I spent a lot of time alone. Ben had a month off work when I was first diagnosed, but he then had to go back to keep earning. We agreed that keeping as much normality as possible for our son was the priority. My family lives all over the country so we weren’t able to visit very often, but my in-laws were our lifeline – they also did the best laundry and ironing service!

I had two stem cell transplants; my donor was a young German man, who I am incredibly thankful for. I experienced mild graft-versus-host disease (GvHD), amongst other random side effects, but the cells engrafted well and I achieved full remission for one and a half years.

I experienced two relapses, and I am now on my fourth line of treatment at present. I am thankful for all the support I have had around me, and I’m now working towards having this current chemotherapy stabilised. 

If I had known the signs and symptoms of leukaemia sooner, I may have seen them for what they were rather than passing them as day to day struggles. 

Resources available for PCL

As Elena mentioned, PCL is an incredibly rare variant of multiple myeloma. Research can be tricky to find, so we have collated everything you may need or want to know about your or a loved one’s PCL diagnosis. 

From causes, to how it affects your body and likely treatments, our free patient information booklet will cover the basics for you. Download yours from our shop here.

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