Louise

I was 47 and working as a theatre nurse. In March 2021 I discovered a small lump in my collarbone and mentioned it to a colleague, an ENT consultant I have worked with for 20 years. I asked him if I should be concerned and whether I should have it checked out. 

Things spiralled from there. He sent me for an ultrasound scan, followed by a fine needle aspiration. The fine needle aspiration came back inconclusive, so a CT scan was arranged. The CT scan showed lymph nodes in my neck, chest and armpits and my initial thought was whether I could have breast cancer. 

A mammogram was organised but that came back clear, so a biopsy was carried out. The biopsy came back suggesting it was lymphoma, but I was told I needed to have an excisional biopsy to get a definite diagnosis. The week of waiting for the results was really difficult.

The results of the biopsy came back as stage 2 classical Hodgkin lymphoma. I had been in theatre when biopsies had been carried out, so had heard about lymphoma and leukaemia, but now I realised how little I actually knew about lymphoma.  

I was referred to haematology in the hospital I work in. I found it hard to accept that I had a diagnosis, and never thought it would happen to me. It felt like it was all happening to someone else. 

I stopped work to have my treatment and being the patient, not the healthcare professional, felt very emotional and frightening. 

The plan was for me to have six cycles of chemotherapy. I struggled with nausea and found that for a few days after treatment I had a fog over my head for a few days. I had a very thick head of hair, but knew I would lose it. It started coming out after the second round and I lost not only the hair on my head, but also my eyebrows and eyelashes. During that time, I felt really tired and my joints ached. Even now I struggle with fatigue. 

After two cycles of chemotherapy I had a PET scan which showed I had reacted really well to treatment. I was told that at an MDT meeting they had discussed my treatment and they thought that the best plan would be for me to have three cycles of chemotherapy followed by radiotherapy.

I read a lot about radiotherapy and worried about the risks that go along with it. However, I tolerated the radiotherapy really well and just got a sore gland. 

At the end of treatment I had another PET scan which showed I was in remission. 

When I first suspected something was wrong, I only confided in my husband, my best friend and my sister about my health concerns. I didn’t want to worry my parents until I knew what was happening. That was a good decision for me as my mum, who is in her 70s, is still going through it and still worries about me now. 

My husband and children, who are now teenagers, think it is finished and are able to forget about it and get on with their lives. I have check-ups every six months and it is always on my mind. If I feel unwell at all I worry whether this is something nasty, and wonder whether I will ever move on from feeling this way. But so far everything has been fine and I hope I can get trust in my body in time.

During my treatment, I kept a diary because I want to be able to look back and remember what happened. Things still remind me of that time, like a particular smell which takes me right back to having chemotherapy. 

I know my attitude has changed and I find I don’t try to think too far ahead. In the past we used to book our holiday a good year in advance but now I like to do things more spontaneously. I like to enjoy life on a daily basis and plan just a month ahead with things to look forward to. 

I have gone back to work and am working part-time. I am in a different department and work with people with cancer. I feel I can now relate to what they are going through and truly empathise with them.