When Rachel Evans developed a rash that made her feel as though she had ‘insects crawling all over her body’, doctors reassured her it was just eczema. Then she received a devastating diagnosis
After developing an “intense” rash across her body, Rachel Evans was told by doctors that she had eczema, but she couldn’t shake the feeling that something far more serious was going on.
The 46-year-old was plagued by extreme itching, dizzy spells, nosebleeds, debilitating fatigue and unexplained weight loss, and despite pushing for answers, she was repeatedly turned away.
Rachel recalled: “I couldn’t manage my symptoms at all. 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.”
Her symptoms started in 2020, but it took nearly two years for doctors to send Rachel for a chest X-ray, which detected a shadow on her lungs.
A CT scan and biopsy followed, and, to her horror, Rachel was diagnosed with Stage 4 Hodgkin lymphoma. Without treatment, doctors warned she may only have six months to live.
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Married mum Rachel was devastated by the news, and says this was made even more difficult on account of her struggles with undiagnosed ADHD.
Rachel, of Almondsbury, South Gloucestershire, shared: “Before my diagnosis, I was so burnt-out from struggling with life and undiagnosed ADHD. 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.”
She added: “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.”
According to Rachel, who has a 10-year-old son and a nearly 20-year-old stepdaughter, her cancer treatment had a profound impact on her and her family. This was further compounded by the sudden illness and death of her mother-in-law.
Her husband went to be with his mother in her final days, and then spent time grieving with his father and sister. Meanwhile, Rachel was left to care for her son alone for several weeks, amid a myriad of escalating challenges.
Rachel explained: “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.
“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.”
In March 2023, Rachel went into remission, and while she still struggles with climbing stairs or hills, she’s thankfully feeling much stronger physically. However, emotional recovery has proven to be more complicated.
Rachel revealed: “My mental health has taken three years to recover. 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.”
Going forward, Rachel hopes her story will help raise awareness of the more “sneaky” symptoms of Hodgkin lymphoma. She said, “I wish that more health care professionals knew more about the symptoms – blood cancer is sneaky, and it hides in the shadows.
“I had a movable, 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 says her ADHD only added to the significant challenges of her diagnosis and subsequent recovery. She continued: “I don’t want any other human being to struggle the way I did, either physically, emotionally, or both.
“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.”
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