Ashley

‘When I was 17, I developed patches of red skin on my left forearm, which have since developed into patches and plaques that have spread over most of my body. Fortunately I was referred to a hospital in London that specialises in skin diseases, where I had a biopsy taken. I say ‘fortunate’, because the skin lymphoma I have is often misdiagnosed as eczema or psoriasis. Only through a biopsy – or sometimes several biopsies – can a skin lymphoma be confirmed. Blood tests and a bone marrow biopsy are also sometimes needed before a diagnosis is reached.

So, over 40 years ago I was diagnosed with mycosis fungoides (MF), a cutaneous T-cell lymphoma or ‘CTCL’. Although a long time ago, I can still clearly recall the shock of being told I had an incurable and rare type of lymphoma. MF normally occurs in people between the ages of 40 and 60 and although it isn’t curable, it very often doesn’t reduce life expectancy.

Once I had picked myself up off the floor, I started to think about what I could do to help myself. The diagnosis changed my life.

At the time I was a fairly typical teenager and didn’t worry about how I treated my body. But suddenly I had to think more carefully about myself and since then, have always been careful about my weight, made sure I eat healthily, take regular exercise and avoid stress.  Early on I realised that stress was a major trigger to my disease becoming active, so I try to avoid things that will wind me up. When we moved house in 2001 for example, my skin went crazy, which was really frightening. So in a way I feel it gives me permission to make decisions and avoid situations that others might not feel able to do.

The best day of my life was when I met Jackie. We got married over 30 years ago and I love her just as much today, if not more. She has supported me in everything and I feel I owe her everything!

I try to fill my days and enjoy life, never taking it for granted. Over the years I have done things that I might not otherwise have done, such as travelling 70,000 miles around Africa between 1989 and 1991 with Jackie and our beloved frizbee-playing dog Ralphie in our motorhome.

Over the years I have been offered a number of treatments, but I understand these are mainly cosmetic rather than curative, so I made careful choices about what therapies I have. At one stage, I started developing patches on my face, so I was given some radiotherapy to clear it up. These patches are sensitive to low dose radiation and fortunately they have never come back. I was also offered PUVA treatment which is an ultraviolet (UVA) light treatment given in a special cabinet in the dermatology department. This treatment can have a really good effect on the skin but is a big commitment as I had to attend a clinic three times a week for an extended period of time. Consequently, I have only had PUVA twice when my skin flared quite badly.

One of the things that works well and is enormously pleasurable is spending time at the Dead Sea in Israel, as the sea is really beneficial for people with skin conditions. I suppose it’s the natural equivalent of PUVA due to it being the lowest place on earth. The extra 2,000ft of atmosphere filters out a lot of the UVB, the burning rays of the sun, so folk can spend longer tanning without burning. Only someone with a skin condition will understand how liberating it is to go swimming in the sea without feeling uncomfortable and embarrassed. 

In 1994, I made a BBC documentary called ‘Scratching the Surface’ which tried to address the subject of skin disease and the public’s attitude towards it. The documentary was viewed by 2.5 million people and afterwards there were thousands of requests for more information. This prompted me to set up a charity aiming to support people living with a skin condition. We called it Skinship (UK).

Skinship was established in 1995, and was run from our home in Essex. Ben Elton and Dr Mark Porter are our patrons. In 2001 we moved to a wonderful cottage in Dumfries and Galloway. We had fallen in love with the place when we honeymooned in Scotland. I recognise that some people living with a skin condition can benefit from emotional and/or psychological support, as there is still an enormous amount of stigma attached to living with a disfiguring skin condition. A lot of people who phone the helpline have become very introspective about their skin, and I feel incredibly fortunate to be able to help. I was overwhelmed in November last year when I was honoured as the ‘Unsung Hero’ at the Scottish Health Awards for my work.

Although I spend most of my time talking with people about their skin problems, I do manage to put my own condition on the back-burner and am very fortunate indeed that since I was diagnosed all those years ago, my lymphoma has not progressed. Over the years Lymphoma Action has referred well over 100 people with this incredibly rare cancer to me and some of them have become close personal friends.

Finally, I would like to add that many years ago I needed support, and turned to Lymphoma Action. I will never forget just how useful that was for me, and I will always be grateful. I would encourage others in need to do the same.’

Some tips from Ashley about coping with a skin condition:

• ‘Baths and showers - I have a body-temperature shower or bath rather than a hot one. It really helps. It might not be so enjoyable, but hot water drives the naturally moisturising sebaceous oils out of the skin. 
• Soaps and shampoos - Ask a dermatologist, ‘do I need soap to clean myself?’ and the answer will be ‘no!’. Soaps, shower gels, bubble baths and shampoo all drive natural oils out of the skin. They are often then replaced by costly moisturisers. The best hair and cleanest scalps are on the heads of people who don’t use shampoos or conditioners, but who wash their hair and scalp regularly with warm water.  
• Drying your skin - Never rub your skin after a bath or shower, but pat or dab it dry with a clean towel. If you need to use a moisturiser, apply it while your skin is still slightly damp as this will help lock the moisture in.  
• Washing your clothes in detergent - Washing machines now use less water which is excellent news environmentally. But the result is that detergent can remain on the clothes. After normal washing, put your clothes through a separate rinse cycle, to get rid of any soap residues.
• Trying to break the itch-scratch cycle - Avoiding scratching is easier said than done, but habit reversal can be really effective. Individual itches don’t tend to last, so sitting on your hands and counting to 30 should mean that the itch has gone, you haven’t scratched and therefore haven’t damaged the skin and made it more itchy. If you can break the itch-scratch cycle, you really will notice an improvement in your skin.
• Your medical team - This is a rare disease which falls between the specialities of dermatology, oncology and haematology. So don’t be afraid to ask the consultant about his or her experience in dealing with this disease. We have a right under the Patients Charter, because of its rarity, to be referred to an ‘expert centre’, should we wish to be seen by experienced clinicians. Also don’t be embarrassed to ask for a second opinion if you want one.
• Ask for counselling if you feel it would be beneficial.’