Hayley

Hayley taks about her diagnosis of Hodgkin lymphoma at the age of 37 and with a five-year-old daughter. She shares her experience of chemotherapy, the emotions that arrived once treatment had finished and the challenges of returning to 'normal'.

'As a family we were living a lovely and undramatic life. My five-year-old daughter was in reception at school and my husband, who is a teacher, had started a new role. I was enjoying my job working full-time as a Director of Operations at a social enterprise. 

Towards the end of 2023 I was experiencing breathing issues. I was tested for asthma and given an inhaler, which helped to start with. But things got worse again and I was struggling to breathe almost every evening. I was having more tests and trying other inhalers to see what would help.

In December 2023 I felt a tiny lump in my neck which was about the size of a pea. I went to see my doctor who said I was probably fighting an infection, but told me that if the lump didn’t go down within three months to go back.

I had COVID over Christmas and the lumps in my neck got larger, but I figured it was because of the COVID. I also began itching all over, all the time. Throughout January and into February the lump in my neck didn’t get any smaller, and by early March I began to feel another lump. I went back to the doctor in March who immediately referred me to the two-week cancer pathway. 

I had an ultrasound scan and received a call within a few hours to say they were referring me to haematology. I could tell straight away that they suspected something. My husband and I had been discussing what we thought it could be and had concluded that it was possibly lymphoma. With the lumps and itching, it really felt like there wasn’t anything else that it could be by this stage. I had a PET-CT scan and a biopsy and then had the stressful wait for the results.

I was diagnosed with Hodgkin lymphoma, stage 4A. 

Hayley

In April I was diagnosed with Hodgkin lymphoma, stage 4A. It was explained that it was stage 4 because the lymphoma was in my neck, the right side of my chest and it had spread out of my lymph system into my lung. It turns out that the breathing issues I’d been experiencing daily were due to the infected nodes all over my chest and in my lung.

Because we had speculated that it was likely to be lymphoma, I had done a lot of the worrying and especially a lot of crying beforehand. It was still a shock to hear that it was lymphoma, and that it was stage 4, but now it felt like we could get on and tackle the problems rather than it hanging over us. 

We told my daughter's school before we told her so that they were prepared if she went into school and started talking about it - which she did!

Hayley

I felt guilty that this was happening to me and how it would affect our five-year-old daughter. I couldn’t help feeling that in her first year of school this was a lot for her to deal with. We told her school before we told her so that they were prepared if she went into school and started talking about it- which she did! 

On the first day after we told her she went up to her little friend and said 'My Mummy has a lump in her neck which shouldn’t be there, and the medicine will make her hair fall out.' She really took in everything we had told her. We wanted to be as open as we could be with her and used words like ‘cancer’ and ‘chemotherapy’ so that she had some understanding of what was ahead of us. Her teachers were fantastic, and one of her teachers spent a long time on the phone with me when we let the school know. We were so grateful for the care they gave to all of us.

I was given a choice of having either ABVD or escBEACOPDac chemotherapy regimen. EscBEACOPDac would mean more time in hospital with treatment on days 1, 2, 3 and 8, which worried me because of my daughter and how this would affect her and our daily routine. But talking it through with my husband and consultant, it felt like the intensive course of EscBEACOPDac was the right choice for me. 

I started my chemotherapy regimen just eight days after my diagnosis. This is when I started living from appointment to appointment and I felt I was just waiting for the next visit to hospital. On the first day of treatment my five year old gave me a card which said 'Happy Getting Well Day' and this really drove me on.

The symptoms I had been experiencing stopped almost as soon as my treatment started. 

Hayley

The symptoms I had been experiencing stopped almost as soon as my treatment started. What had been thought to be asthma went away and the itching stopped. I hadn’t realised just how unpleasant all that itching had been, because you strangely get used to it. But it was such a relief now that it had stopped. 

I had expected the chemotherapy to be intense and in my mind I made it even worse than it was in reality. The first day of treatment was really long. I had a PICC line fitted and a long meeting with the pharmacist to talk through tablets. After a very long day, I was able to go home, but within 10 minutes of leaving I felt really hot, shaky and nauseous. I thought this was how I should expect to feel, but my husband took me back to the unit. My blood pressure had dropped so I was admitted into hospital overnight. It was suspected that I had a reaction to one of the chemo drugs and as a result it would be given over 2 hours, rather than 30 minutes, for the rest of my chemo rounds.

I knew I would lose my hair, and felt quite relaxed about it until it actually happened.

Hayley

For the first day after chemo I felt so nauseous, it was beyond anything I’d experienced before. I was worried that this is how I’d feel for the next twelve weeks, but luckily it subsided after a day or two. I also felt completely exhausted, and the fatigue was one of the hardest symptoms for me. I had hoped to be able to drop my daughter off at school; it was a 10 minute walk, but I just couldn’t do it. I struggled with hair loss too. I knew I would lose my hair, and felt quite relaxed about it until it actually happened. By week two of the first cycle I was losing my hair quite rapidly. My husband shaved it to a number 1 length but within two weeks what little was left had gone. 

It turned out I was not OK about losing my hair and it made me feel really depressed as I felt like I’d lost part of my identity. I tried to embrace it, especially because I never felt particularly comfortable in my wig – partly because I felt self-conscious and partly because it was the middle of summer – but I found my hair loss really challenging. In particular, when I had finished treatment the loss really hit me and I struggled to look in the mirror for a long time.

An interim scan after cycle two of escBEACOPDac showed I had a complete metabolic response and meant that I only needed two more rounds of chemo. 

I felt completely lost without the focus on treatment and was struggling with fatigue.

Hayley

I had my last chemotherapy on 4 July and throughout August I still had no hair and was willing it to come back. The period after treatment was when I really felt lost and got very emotional. It wasn’t about the hair really, it was that I now felt completely lost without the focus on treatment. I was struggling with fatigue and some days I struggled just to get up and down stairs. 

I tried to do a five minute walk every day to build up my energy and found that being out in nature was really therapeutic. But it took longer than I’d thought to be able to pick my daughter up from school. People were telling me to take it a day at a time, but I like to plan. Finding I simply was too exhausted to do anything was so frustrating for me.

To help build my strength and get back in action I created a sponsorship page to try and get me out of the house. I was sponsored by friends, family and had a significant donation from work and I managed to raise over £1,000 for Lymphoma Action. I found that my energy was gradually coming back and think the exercise every day had a huge impact on it. 

My workplace was incredibly understanding throughout these challenging months, and it was made very clear to me that my health and family were more important than anything going on at work. I was able to flex my hours and work when and if I was able to. The support they gave me meant I worked remotely on and off during treatment. In fact, some of my colleagues were the first people outside of my family to see my bald head! Being able to do some work helped me feel like there was some structure in my life and something I had control over when everything else felt so out of reach.

In August we got a puppy which really helped with both the exercise and my mental health, it is wonderful having a bit more happiness around the home after this year.

Returning to a new normal hasn't been plain sailing. 

Hayley

Returning to a new normal hasn’t been plain sailing, I found it hard returning to work full-time when my family went back to school in September. I physically felt better which masked how I was feeling emotionally. I decided to take more time off and went back to work in mid-October, and this was definitely the best decision for me. I had more time to process everything that had happened throughout the last few months and learned to live with the ongoing side effects that chemo has left me with. I talked to a counsellor about the guilt that I felt and was reminded that I should say ‘well done’ to myself for everything I had gone through.

Lymphoma Action have also been an enormous source of support. I was given their book when I had my diagnosis and contacted the Helpline with questions I had around my chemotherapy. The thing I found most useful was the closed Facebook group. On day one of treatment I posted on the group and the messages were so helpful. I was feeling very sick at the time, but others talked about how that tended to subside within two days, which was reassuring. I also connected to someone who was having the same treatment as me, which made the experience less lonely. I felt like I had found a community who are willing to share and help, but not to judge.

I am nervous about the next couple of years and am far more aware of my own mortality. But I am learning to take each day as it comes, and make the most of things without overthinking. I know how lucky I am to be here and to be moving forward with my life after only a couple of months of treatment.'