Chasing itching and back pain to a diagnois of Hodgkin lymphoma.
Shortly after my 30th birthday I started suffering from lower back pain at night. A few months later I developed a constant itch across most of my body, although I had no rash or markings. If I itched it could disappear for a few seconds, but I found I was chasing itches around my whole body.
My GP thought my symptoms might be as a result of an allergic reaction and I was given several antihistamines, but with no success.
I was waking at about 3am, not only with the itching, but with back pain. I had to take sedatives to get any rest, itching myself to sleep. Looking back, I’m not sure how the itching didn’t drive me mad. In addition, my back was causing me so much pain I couldn’t sit and I would curl myself into a ball to help relieve the pain.
I then noticed my glands above my collarbone were very large. It started as a small frozen pea shaped lump nearby on the bone, which quickly became 3 lumps. I am so glad these lumps developed as it was because of them I finally got to the root of the problem. I went to my doctor who did a raft of blood tests and referred me to ear, nose and throat (ENT). After examining the lumps in my neck, I was immediately sent for a biopsy.
Ten days later, at the end of April 2023, I was diagnosed with Hodgkin lymphoma. I then needed a scan to stage the lymphoma, which came back as stage 4 with lymphoma across my tonsils, collarbone, sternum, armpits, lungs, L1 spinal disk, and hip!
My wife Carly works as a therapeutic radiographer and had suspected it could be lymphoma. Hearing it was stage 4 was a gut punch, as for most cancers this would be awful news. But lymphoma is different because the lymphatic system is all over the body, so we were told it is common for lymphoma to be stage 4 when diagnosed. We were told it was likely to be highly treatable, which took some of the worry out in a way.
Strangely, the diagnosis was actually a relief, having struggled with symptoms for months. I look back now and realise how unwell I was before my diagnosis and how miserable that period was. I now felt like my health would get sorted out.
I have anxiety about needles and so I thought chemotherapy would be my worst nightmare!
In May I started treatment with 4 cycles of escalated BEACOPP dac chemotherapy. My wife Carly was with me all the time, using annual leave when she needed to. On some days we were there for as long as 8 hours. The needle problem was made worse by the fact I had to have injections into my stomach carried out at home. I tried to do them myself, but was so grateful that Carly did these for me.
I lost my hair and my beard fell out, but I kept my eyebrows. I felt I looked different and in many ways looked more like my brother at that time!
As chemotherapy finished I had a lot of mixed feelings. Everything happened so fast and I am still coming to terms with it. I was the only 30-year-old and slightly out of kilter with the demographic for Hodgkin lymphoma – being older than one group and younger than the other. So it felt a bit of a lonely experience, and I hope by sharing my experience others will identify with me. I hope others who have a fear of needles will also take comfort in the fact that I managed, despite a lot of anxiety.
I felt helpless throughout the whole thing and I'm not ashamed to say that my wife carried me the whole time. She held my hand from the initial biopsy and through all the blood tests and cannulas. She also did all 31 at-home stomach injections for me because I couldn't look. I am enormously grateful to her for making it possible for me to get through treatment.
My last dose was at the end of August 2023, and I have been told that I am in complete remission. I am back to work as a building surveyor, although now do work from home much of the time. At first fatigue was a challenge, but fortunately I have managed to recover from it fairly quickly.
I had one counselling session at Maggie’s, but I felt I was coping well enough. One thing I find really helpful - and that has helped me process what I have been through - is writing about the experience. Writing has brought up a lot of feelings but I would really recommend it. In a way, the experience feels like a mental itch, and writing it down has stopped me having to scratch it. The other thing that I found really helpful was walking our very vocal cockerpoo dog called Winter every day. I never spent a day in bed because I needed to take Winter out.