A mum who spent 20 years believing her skin problem was down to eczema has discovered she actually been living with a rare type of blood cancer for over two decades.
Vivian Neil, 43, from Dunfermline, Scotland, first noticed the itchy rashes across her body in her early 20s.
Despite repeated trips to the doctor, Vivian, who is mum to Keiran, 26, and Jimis, 25, was just given a range of different creams to try to help.
“The doctors always thought it was eczema but now, with the diagnosis, they realised that it was the cancer all along,” Vivian told Jam Press.
“It steadily got worse over the years but it is so hard to diagnose.
“I lost count of the different creams I have been given over the years.”
As the patches spread, it really started to impact her confidence.
She said: “I always wore clothes that covered the patches and if I was wearing skirts or dresses I always wore tights.
“I never ever showed my bare legs as they were the worst.”
In February 2018, Vivian was worried when one of the patches turned a “browny colour” and she booked an appointment with her GP.
Concerned by the changes, her doctor referred her to a dermatologist at Queen Margaret Hospital for a biopsy.
The test revealed she was living with mycosis fungoides, a variant of a blood cancer called cutaneous T-Cell lymphoma.
She said: “I was in complete shock when I got told I had cancer and then to be told it was a rare incurable blood cancer.
“It took me a long time to come to terms with it.
“When you hear cancer you automatically think the worst and I thought my life was over in my 40s.”
The cancer is not terminal unless tumours grow on the patches and although some of the symptoms can be reduced with treatment, Vivian will live with it for the rest of her life.
Vivian said: “I will get monitored and managed and as long as I don’t get any tumours, I can live for another 20-30 years.
“This cancer is classed as a lazy cancer but knowing that tumours are very possible is still very scary. It is always in my mind.”
She was given UVB light treatment in 2019 but had a severe allergic reaction and was waiting to start an alternative called PUVA, which involves taking a drug called Psoralens (P) and then exposing the skin to long wave ultraviolet radiation.
Sadly her appointments were cancelled due to Covid and she was told it would be monitored until after the pandemic.
At the start of 2021, her skin was getting much worse, with patches now covering 90% of her body, and although the light therapy could not go ahead, she was offered a chemotherapy tablet called Methotrexate.
Vivan said: “It is usually used for arthritis as it reduces inflammation but has also been used in treatment of mycosis fungoides.
“It did help with the inflammation on my skin but it made me feel absolutely awful.
“I took six tablets a week and it made me feel extremely nauseous, I had severe headaches, extreme fatigue, hair thinning and swollen and bleeding gums.
“I also had to have my bloods checked every week as the Methotrexate can damage your liver.”
Knowing she was at risk of losing her hair, Vivian made the decision before starting the treatment to shave her hair off.
She said: “I did it to raise funds for Peacock in Pittencreiff Park where I volunteer as Assistant Peafowl Warden as I wanted to make positive out of a negative and we raised £1800.
“I went into a very dark deep depression for about six months at the beginning of 2019 as I had an operation in my back as well to fix my sciatica.
“The Peacocks in Pittencreiff Park saved me. The birds were my therapy and also the volunteers have been amazing with me.”
With the chemotherapy not working as well as expected, Vivian was offered a type of radiotherapy called Total Skin Electron Beam Therapy at the Freeman Hospital Cancer Centre, Newcastle.
As she is being treated as an outpatient, she needs to stay nearby and had to fundraise the money needed for travel and accommodation.
She travelled down earlier this month and will stay for two weeks to complete the course of eight treatments but has vowed to donate any extra money back to the peacocks.
She said: “So far, I’m starting to feel tired, sicky and my skin is so sore and extremely itchy.”
Vivian hopes the treatment will help improve the patches on her skin and help her get her life back on track.
She added: “I am never one to ask for help. I am always the one who offers help but I felt I had no option to raise the money that I needed to travel to get my treatment.
“I was completely overwhelmed with the response I had. It actually reduced me to tears seeing how generous people were.
“I have not had the easiest life for the last four years old and it just amazes me that there are lovely people out there that will do that for someone.
“I am hoping this treatment will reduce the patches that are over 90% of my body and slow down the progression of cancer.
“Doing so will give me a better quality of life by reducing the fatigue, itchiness and confidence in my body that I have not had in a long time.”
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