A Scots mum who struggled with eczema for 20 years was stunned after finding out the spots on her body were actually a rare form of skin cancer.
Vivian Neill, 43, had been suffering since she was 21 but in February 2018 visited her local doctor’s surgery when the marks on her skin were starting to turn a strange colour.
She was sent for a biopsy after which Vivian was diagnosed with Cutaneous T-cell lymphoma (CTCL), a rare type of incurable skin cancer.
The doctors then told her that her eczema was more than likely cancer all along.
Vivian, from Dunfermline, has to live with the condition for the rest of her life, with 90% of her body now covered in rash-like patches.
However, in recent months it has been getting worse, leaving her in agony and leading her to seek out alternative treatment to sooth the rashes.
She told the Record: “The condition affects the skin, it looks like eczema but what it does is that too many white blood cells are getting produced in my body but it’s worse than eczema, it inflames.
“I’ve got it over 90% of my body, I’ve got red patches everywhere, my whole back is just a big massive patch, it inflames like hives so it can be really, really sore to the point that I can’t even put clothes on.
“It’s itchy, the itching is so bad that I have to keep my nails short, I need to take anti-histamines because I wake up with blood all over my covers due to the fact I’ve been scratching myself in the middle of the night.
“Now the patches are getting worse, I’ve got more patches, they are getting more inflamed, they are getting thick which is the next stage of the cancer, that’s what we have been trying to prevent.
“There is more coverage now, it was already from my head to toes and now it has actually started appearing on my face as well.
“I’ve always said that as long as its not on my face, I’m not going to panic but now I need to get it fixed as soon as possible.”
CTCL is a rare skin cancer and is incurable although it is not terminal, unless tumours grow where the patches form.
Vivian has been undergoing treatment to try and lessen the effects of the disease and has just finished a course of chemotherapy in tablet form.
However, it didn’t work as well as the doctors expected, leaving her in the same condition.
Instead she has been accepted for radiotherapy called Total Skin Electron Beam Therapy (TSEBT) which is only done at the Freeman Hospital in Newcastle.
She will be getting it done over her whole body to kill the white blood cells causing the rashes.
There is no guarantee that it will work, but it is the final throw of the dice for Vivian.
After her diagnosis, Vivian admits she struggled to come to terms with the devastating news and her mental health suffered as a result.
She didn’t leave the house for six months as she contemplated putting up with the skin condition for years to come.
But now the mum-of-two tries to look on the bright side of life despite her discomfort and volunteers helping out with the peacocks who run free at Pittencrief Park in Dunfermline.
She said: “I was in a very, very bad place after I was diagnosed, and I was very depressed.
“I didn’t even bother coming out my bed for about six months but then I decided to give myself a kick up the butt.
“I started to walk around Pittencrief Park where I live, and that’s where the peacocks are and I used to see them all the time on my walks in the morning.
“I just asked to volunteer there, they’ve actually saved me so much, when I’m having a bad day I just sit with the peacocks.
“I can’t work anymore, I’m not able to have a relationship for the last five or six years because i’ve got to concentrate on myself.
“Sometimes I have good and bad days, the fatigue can hit me like a wall, sometimes I stay in bed for four or five days cause I feel sick.
“The fatigue, itching and hot flushes are the worst, and then I have flare-ups that can last for days and are random.”
As part of Vivian’s treatment, she would have lost her hair but she decided to get out ahead of this and shaved it off already.
She hopes that the radiotherapy treatment will “make her feel normal again.”
Vivian added: ” I’m still going to have the cancer, I’m always going to have the cancer but I want it to be monitored and managed and not cause me as much pain.
“I’ve been in a bubble for about two years now due to Covid and the effect on my immune system so it would be great to go and do normal things again.”
Vivian also urged people who may have similar skin conditions to get checked out by a doctor, just in case they have been misdiagnosed.
She said: “You will know your own body, and if you feel like something is off, like I did for years, push the doctors that little bit more and don’t just take their word for it that their diagnosis is right just because they are from the medical profession.
“I am living proof that docs can be wrong for many years and I am just glad that one GP that took that little bit more time to look at my skin and sent me for a biopsy rather than just flinging more cream at me without even looking my skin over.”
Vivian is crowdfunding to help her pay her accommodation costs for getting treatment in Newcastle, with any extra money going towards the Peacocks.
You can donate here.
NHS Fife have been contacted for comment.