Rachel's story

Rachel followed her instincts after having a rash reappearing for years along with other symptoms that left her knowing something wasn’t right. After multiple trips to the doctors, she was diagnosed with stage 4 Hodgkins Lymphoma. She is here to tell her story and help others act on their gut feeling.

My diagnosis

I’d been struggling with life for quite some time, and when the diagnosis came, things started to make sense, in terms of fatigue and physical mental exhaustion.

I have a son and stepdaughter, and had had to give up work because I felt like I couldn’t cope. My body was not coping but I didn’t know why.

I first got a rash in spring 2020, when Covid-19 was starting. The doctor said it was eczema but I didn’t agree with that. I put it down to Covid-19, but in February 2022 the same rash returned and so I immediately phoned the doctor again. They once again said it was eczema, or even an allergy to sunlight, and I was prescribed lots of creams that really didn’t do that much.

I asked to be referred to dermatology and showed them a lump on my leg. As the weeks passed, more lumps appeared on both legs, so I went back to the GP. He asked if I had been ill, and I remembered years ago I kept getting poorly and losing my voice, resulting in having to cancel lots of my singing lessons when I was working as a singing teacher. I had a chest X-ray and they said I had a shadow on my lungs. I didn’t know what that meant, or what it had to do with my rash, but then the words ‘blood cancer’ were put out there.

I had a CT scan and a biopsy which showed that I had enlarged lymph nodes in my chest and my neck. The results came back as stage three Hodgkin’s Lymphoma, which is a blood cancer. I had a full body PET scan which showed it was actually stage four, and it just started to creep into the edge of my lungs. I had 2 tiny lumps on my chest, which I found after my diagnosis, as well as the erythema nodosum lumps on my legs, which were a sign of cancer. When I asked the consultant, if I don’t take the chemo, how long do I have? He said six months. I was 44 at the time.

Before I got the cancer card, I didn’t really know much about cancer. I thought it happened to older people. I thought if someone goes through chemo, they lose their hair, they become frail and fragile. So when it happened to me, I thought, but I’m only 44!

I’m a Christian, and I believe that I am valued and loved and precious, and I don’t have a fear of death. I have a fear of getting old, but I don’t have a fear of dying. When the diagnosis came, I lost hope and I wanted to escape. But then the common sense kicked in. I’m a parent. My son needs me, and I’ll do this for him.

Penny Brohn UK

I have a friend who is a nurse who mentioned Penny Brohn UK. It was when I moved into recovery and I came to Penny Brohn UK for one-to-one gym based rehab. I can remember feeling really excited about that and I really enjoyed it, and that’s when I started coming to Penny Brohn UK. I started accessing the services more, when I was through treatment and in recovery. Then I came to a wellbeing day, I can really see the benefits of it. That was good to meet other people who’d been through what I’d been through although I wish I had more time to talk to those people about our cancer experiences and diagnosis. At lunchtime, we were swapping stories and somebody else talked about how they were also diagnosed so late. And the food was really good!

Penny Brohn UK’s centre is beautiful and peaceful and you come here and you feel like, kind of being restored, there’s a lot of beauty about the place and it’s very calm. I think the wellbeing days are absolutely a really good thing to provide.

Hopes for the future

I really want to get my story out there. I’m really, really hoping that from sharing with you today, that somebody somewhere could read it and think, gosh, I’ve had a rash or a symptom that won’t go away. You know your body best, so if something doesn’t sit right with you, or you just have that gut feeling, it is always worth getting it checked out, even if you have to get it checked multiple times.

I was inches away from losing my life. So if my story can save one or two or three or more lives, if somebody somewhere can read my story and think I’ve been meaning to go to the doctors about this, they may not have cancer, but what if they do?