'When doctors finally told me what my rash was, I considered dying'

When a mysterious rash spread across Rachel Evans’ body, doctors kept telling her it was just eczema. But Rachel, 46, knew something wasn’t right. Struggling with unbearable itching, dizzy spells, nosebleeds, crushing fatigue and unexplained weight loss, she kept pushing for answers only to be told that everything was fine.

"I couldn't manage my symptoms at all,” she says. “The rash was unmanageable, it felt like there were insects crawling all over my body. I couldn't cope with the intense itchiness of that rash. I couldn’t sleep and I couldn't work. It completely took over my day and night, and the fatigue I felt was intense."

Rachel’s symptoms began in 2020 and it was nearly two years before she was sent for a chest x-ray which showed a shadow on her lungs. A CT scan and biopsy finally revealed the truth; she had Stage 4 Hodgkin lymphoma. At the time Rachel, married with a stepdaughter who is nearly 20 and a son, 10, was struggling with undiagnosed ADHD.

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“Before my diagnosis I was so burnt-out from struggling with life and undiagnosed ADHD,” she says. “I have two words for how I was feeling - survival mode. My doctors thought I would only have six months to live if I didn’t have treatment. As I was emotionally dysregulated, I considered allowing my body to die from the cancer naturally.

“But then I was able to consider the needs of my son and so I decided to take the six months of ABVD chemotherapy. Everything happened really quickly. It was a very traumatic experience, more trauma on top of lifelong physical and emotional trauma caused by the ADHD. This developed into complex post traumatic distress after chemotherapy.”

Rachel’s cancer treatment affected her and her family deeply, and the trauma was exacerbated by the sudden illness and death of her mother-in-law. She was left to care for her young son alone for several weeks while her husband was with his mother and then grieving with his father and sister.

“Our home life was already emotionally challenged due to my undiagnosed ADHD, and our son's undiagnosed ASD and ADHD, so the cancer treatment caused a massive nosedive in the atmosphere,” Rachel says. “In addition to the physical and emotional suffering from chemotherapy, like the pain of the picc line going in, problems with them extracting blood, panic attacks before chemo sessions, excruciatingly painful haemorrhoids, bloating, tummy pain, weight gain, loss of taste, nausea and receding gums, we had to deal with the very sudden family bereavement.”

Rachel went into remission in March 2023 and she is now much stronger physically, struggling only with climbing stairs or hills. “My mental health has taken three years to recover,” she says. “Thanks to ADHD medication, HRT for perimenopausal symptoms, psychotherapy, self educating, and finding therapy myself, I am fully ready to engage with the world again, not just restored, but transformed.”

Rachel, from Almondsbury, South Gloucestershire, wants to tell her story to raise awareness of the symptoms of Hodgkin lymphoma that are less common, not typical, and more unusual. "I wish that more health care professionals knew more about the symptoms - blood cancer is sneaky, and it hides in the shadows,” she says. “I had a moveable painless lymph node, but not in my neck like most people get, it was in my jaw. This is uncommon, but not unknown.

“My weight loss was subtle because I was already quite slender, and the weight had dropped off gradually throughout the years. I had a history of eczema, and a history of depression and anxiety, and I think this history masked the root causes of the blood cancer and the ADHD.”

Rachel also says that struggling with both cancer and ADHD at the same time compounded the difficulties of going through her diagnosis and recovering. "I don't want any other human being to struggle the way I did, either physically, emotionally, or both,” she adds.

“I especially have a heart for women who have undiagnosed or diagnosed ADHD, and are perimenopausal, and have had to face a cancer diagnosis on top. ADHD is subtle, and not easily detected, especially in women, unless you do the detective work.

“I want to raise awareness so that others are educated, and have a better chance of enjoying life, in all its fullness. I believe my life was saved in many ways, for many reasons, and sharing my story is just one of them.”