'With cutaneous T-cell lymphoma, you live your life in 'good' and 'less good' moments. 

In case you’re not familiar with cutaneous T-cell lymphoma (CTCL), this is how I can describe it.

Cutaneous T-cell lymphoma (CTCL) has two parts: it’s a blood malfunction that manifests itself on my skin. It looks like psoriasis on a bad day. It feels like having flu and really sore skin at the same time. At this point people usually say: ‘I bet that’s awful …’ People sometimes say: ‘… your skin looks sore. How does it feel.’ I explain: ‘… have you ever had a carpet burn or bad scrape? Imagine a paper cut and how irritating that is … but it’s on your entire body.’

My journey: My skin problems started in 2004 and were diagnosed in 2010.

My first skin problems started in 2004. I was diagnosed with CTCL in 2010 and started receiving care from my current consultant in 2014. This means that I was in a grey area for nearly ten years. For my first four years with this condition, my doctors were listening, but no one really investigated what it was. My doctor prescribed topical creams, but no one made the connection that it might be something else – even when my skin was plaquing and showing CTCL symptoms. As CTCL is not a common condition, no one really asked: ‘I wonder if this is something else …’

My diagnosis: For several years I was treated for psoriasis and eczema.

For a few years I had skin conditions which were treated as psoriasis and eczema. Then I was also separately diagnosed with another form of cancer, Hodgkin lymphoma, and treated for this with chemotherapy. Coincidentally, during this treatment, my skin condition cleared up. When my skin discomfort reappeared later, I consulted my GP who saw that this may be more than a typical skin condition. I was referred to a consultant dermatologist and that’s when I was diagnosed with CTCL. I am now treated by a medical team with a lead consultant who links to several specialists. Together they help manage my condition.

It's not in your skin, but in your blood. That totally confused me.
To be honest, I felt confused when I was diagnosed.

They called my condition ‘mycosis fungoides’. I asked what that was. The dermatologist explained: ‘it’s a form of cancer … it’s not in your skin, but in your blood’. That totally confused me; I couldn’t make the connection to what he was saying. I kept seeing a dermatologist and it wasn’t until a long time after, when I started with my consultant who treats me now, that I understood that I have a rare cancer called CTCL. For the first few years I didn’t really know how to talk about it. When you have CTCL, there’s no CTCL-specific patient group to connect with, the awareness is not there; the ‘big cancers’ take the limelight.

They said: ‘we don’t know where our CTCL information is … we’ve never had to use it.’

In the medical centre where I was first diagnosed, they told me: ‘we have information about CTCL, but we don’t know where it is, because we’ve never had to give it out’. So, my husband and I decided to look up details of CTCL ourselves. If you search the national cancer groupwebsites for CTCL, they offer no information on the condition. They cover blood and skin cancer but not CTCL. This is why I agreed to share my story with you. I can’t think of any other way that CTCL can become better known. There’s no big CTCL campaign. Nobody is saying what research is happening. I don’t know of any CTCL-specific groups.

With CTCL you live your life in good and less good moments.

My CTCL has  different stages. If I am having an ‘episode’ where my skin feels really bad, this affects my life massively due to pain and  presentation’ – how my skin looks to others. I love swimming and go four times a week. But at certain times I can’t, for two reasons: 1) I can’t bear the presentation of it in public, and 2) during these times it makes my skin very sore. This affects my physical and emotional wellbeing and I have periods of feeling incredibly low and apathetic.

With CTCL you live your life in 'good' and 'less good' moments. That's how I think. In my treatment cycle, when my situation is bad, I look to the end of the cycle; this gives me hope. Today I know that with my current treatment, I will start to feel well in the near future. That's what I'm thinking about now.

In my  current treatment cycle the situation has become bad. But I know that I will start to feel well at the end of the treatment, so am thinking about that. This gives me hope.

What keeps me going is the hope that I will get through the situation and get back to more normality in my life. For me, normality is to be able to pursue the interests that I have, to wear what I want … with CTCL, what you wear is an issue; you can’t wear clothes that irritate the skin.

My husband is my primary support. 

He is a Formulations Chemist and we did a lot of research together on the CTCL condition. My consultant dermatologist has been absolutely key to helping change my life - both in addressing CTCL and in my ability to take control. 

My life is fantastic in every other area. I will not be defined by this condition. I have really supportive family and friends, and my work colleagues are understanding and accommodating. With this support I think I am well-placed, compared to others that have CTCL. When I am not in pain, CTCL is a part of my life that I put in a box and put to one side. 

Ellie's story is one of three in a report produced by Kyowa Kirin entitled CTCL...in our own words.