Jessica

At the end of 2021, I just felt like I had no energy. I have never been a person that’s had a lot of energy, but I do enjoy walking. On a long walk from Marske to Skelton, I noticed that I was feeling breathless but just put it down to feeling unfit. As time went on, I developed a bad cough and an itchy chest which I initially thought was due to eczema, or perhaps a reaction to washing detergent. The tiredness was getting worse, and I had to leave my job in retail as I just ached all the time. I started an office based job as a service administrator, and shortly after in early 2022 I went to the doctor for a blood test as I thought perhaps what I was experiencing was due to low iron. 

I went on to have a number of repeat blood tests, which indicated a high platelet count. This left my healthcare team stumped as to what the case was. I did have a lump in my neck which was actually due to a thyroid condition. As the ultrasound scans on my neck were OK, I was referred to haematology and continued to have repeat blood tests for a few more months to try and work out what was going on. 

My dad was also going back and forth to the doctors during this time and was referred for a chest X-ray. He had a terrible cough and was experiencing extreme tiredness, even after completing a simple task like changing a socket in his job as an electrician.

I was also sent for an X-ray as I was continuing to feel unwell, and to be honest out of the two of us we expected my dad’s results to show something. But his chest X-ray came back clear and mine showed a lump in my chest. We did wonder at that point whether there had been some sort of mix-up.

My dad was admitted to hospital shortly after that with what was initially suspected as a severe chest infection. He was very poorly – his cough was getting worse to the point where he would vomit, particularly after drinking alcohol. He was also breathless and extremely tired and had been taking antibiotics for a suspected chest infection for quite some time before he was admitted. It was only after the results of a blood test came back that he received a call from the hospital asking him to come in urgently. By this time, he had a low white blood cell count and bad kidney and liver function. 

My dad was initially admitted to the respiratory ward, where he went on to receive a full body PET/CT scan as he was really struggling. At this point, no one was telling him what was going on or why he was there. It was mentioned in passing that he might have sepsis or pneumonia, as he was very feverish, but we still didn’t know for sure what was wrong. Once his fever had improved a little, dad was moved to haematology where he received a full skeletal scan and bone marrow biopsy. He then went on to contract COVID-19, so had to be treated for that before he was sent home to await the scan and biopsy results.

By the time dad went back to the hospital to get his results, he was so weak he could barely walk and had to be taken to his appointment in a wheelchair. He was admitted there and then, before receiving his diagnosis of non-Hodgkin lymphoma.

A short while after, on the night of my mum’s birthday, she got a call to say that dad had been moved to the Intensive Care Unit (ICU) and that things were not looking good. I went to the hospital with mum, to find dad on oxygen. He was delirious, had lost a lot of weight and was suffering with mouth ulcers. He actually received his first round of chemotherapy while in the ICU, and thankfully regained enough strength to be moved back on to a ward for further treatment.

It was a really tough time. I was feeling increasingly stressed with trying to juggle work alongside my own health issues and what was going on with dad. I was really looking forward to a holiday to Tenerife that I had coming up for my fiancé’s 40th birthday. With everything that was going on, it would have been a much-needed break. We were due to fly out early in September 2022, but a week beforehand I had a call from the hospital to say I had suspected Hodgkin lymphoma. I asked whether I would still be able to fly and was told that it was too much of a risk with the lump I had in my chest. 

I was devastated, but in a strange way I felt a sense of relief now I knew what was wrong. I was also signed off work, which was a huge relief as it lifted that extra pressure. I went on to receive a PET/CT scan and a biopsy, which officially confirmed my diagnosis a month later. I remember dad and I were given information books from Lymphoma Action when we were diagnosed. I think we were both unaware of lymphoma beforehand. The name 'Hodgkin lymphoma' rang a bell, but I certainly didn’t know it was a blood cancer.

I had my first chemotherapy session shortly after my diagnosis, alongside my dad who was on his third round of treatment by then. I even bought us matching hats to wear; dad pretended he hated the idea, but I think he loved it really! It lifted our spirits while we were in the haematology department waiting to start treatment. The waiting around was definitely the worst part. 

I went on to receive six rounds of ABVD chemotherapy. I noticed almost straight away that it altered my sense of taste and smell, which I could feel even in the back of my nose. My hair also thinned out quite noticeably and was all over the floor and the bed. I decided to shave my hair, as receiving the chemo via a cannular was so painful that I had a Hickman ® line put in which I wasn’t allowed to get wet. My mum shaved my head for me, and I really liked it! I had actually been along to a wig appointment, and bought two wigs which were stunning, but I felt more confident in myself without them. But as time went on, I lost my eyebrows and lashes, started to put on weight and looked very pale, which really knocked my confidence. Other than the side effects of treatment, I think one of the main negatives for me was that I put on so much weight when I thought I would lose it.

I finished my treatment in March 2023, shortly after my dad was told that he was in remission. I then went on to receive the all clear in the May of that year. We had a remission party shortly after, with a good few drinks and some of our nurses even made a special trip to share our night with us. I went back to work but found it very stressful owing to changes in my job and just feeling very low in confidence. I didn’t feel particularly supported, and ultimately I was made redundant which in a way has been a bit of a blessing in disguise. It has given me the time to rest and to figure out what I want to do next.

I have completed a couple of training courses, and am learning new things, but I also want to concentrate on losing weight and gaining more energy. So I have decided to take part in the Great North Run later in the year for me and my dad, and to raise money for Lymphoma Action. I am also keen on sharing my story to help others – whether that’s through raising awareness about the symptoms of lymphoma or as a means of supporting someone going through a similar experience. I want to share everything in any way that’s helpful to other people.

Family history and lymphoma

Most people who have a close family member with lymphoma or another blood cancer do not develop lymphoma themselves. However, your risk of developing lymphoma is slightly higher if you have a close relative (parent, brother or sister, or child) who has had lymphoma or another type of blood cancer. This might be due to lots of small inherited genetic changes that all increase your risk of lymphoma slightly.

Jessica has shared her story with us as part of our Let's talk lymphoma awareness campaign, running throughout Blood Cancer Awareness Month in September. Find out more about how you can get involved in our campaign to raise awareness and funds to support our work.