Owen talks about his diagnosis of angioimmunoblastic T-cell lymphoma and his family history of lymphoma.

Owen with his wife

I have been married to Yvonne for 27 years and we have two sons; one is 21 and at university and the other is 24 and has recently started working as a nurse. I am an IT Project Manager. 

On the first day of a break with my family I developed, what felt like, a bad throat infection. The lymph nodes in my neck became very enlarged, and I thought I must have picked up a strange infection on a business trip. I was given intravenous antibiotics. 

Once home, I was referred to an ENT consultant. After excluding some possible causes, the ENT consultant wanted to continue to monitor me, as my lymph nodes were still a bit swollen.  

After a couple of MRI scans showed no change, a needle biopsy was arranged. The needle biopsy wasn’t conclusive, so I had two lymph nodes removed from my neck, under general anaesthetic in early January 2018. In the days after the lymph node removal my neck was getting bigger and bigger. I thought I had developed an infection in the wound, but it was the remaining lymph nodes in my neck continuing to swell. I was getting increasingly worried, and I found it difficult not knowing what the problem was.

Even with all this medical focus on my lymph nodes, strangely, I did not think I had lymphoma. Both my elder brother and dad had died of non-Hodgkin; my brother in 1999, and my dad in 2001. So I thought I knew the symptoms of lymphoma, and my symptoms were different. Having said that, I was also certain that of all the things I did not want it to be, number one was lymphoma.  

After a difficult month of waiting and worrying, in February 2018 I was diagnosed with angioimmunoblastic T-cell lymphoma, a type of high-grade non-Hodgkin lymphoma, and the same lymphoma my dad had. 

More tests followed including a PET scan, bone marrow tests and more blood tests. I was told that I would be treated with six cycles of CHOP chemotherapy, and then if I was in remission, I would be given a stem cell transplant.

I wanted to be open about the diagnosis. My family were amazingly resilient, and this helped. 

We wanted to be open about it, and wanted our sons to know first. We went to see each of them in turn. They knew I had been unwell for a while, and had been off work, so knew it was something serious. But I was impressed by how caring and mature they were, and reassured that they were as OK as they could be with the news. My mum would also have to go through the non-Hodgkin lymphoma experience of an immediate family member for a third time; maybe that’s unique. Yvonne, my sons and my mum were amazingly resilient, and this helped me. 

I now felt able to let others know, and found telling family and friends very helpful as everyone was very supportive. Small gifts and regular phone calls made me realise they cared – perhaps more than I had known before. Although I had already been off work for several weeks, I was now able to give them a clearer picture of what my diagnosis would mean work-wise.   

I began treatment at the end of February 2018 with CHOP chemotherapy. At the beginning of the second cycle I lost most of my hair. I woke up one morning with loads of it on the pillow, and then had a shower and lost most of the rest, so decided to shave off what was left. It was a bit weird and I was self-conscious for a few days, but people were quite positive about my new look, so I began to feel OK about it. 

The six chemotherapy treatments were in 3-week cycles. By the end of the second cycle I knew the pattern:

•    Week 1 – low appetite and feeling sick, and sometimes being sick
•    Week 2 – feeling better than week 1 but aching back and hips
•    Week 3 – feeling normal(ish). 

By the end of the second cycle I could see a bit of improvement. My lymph node swelling was reducing, and I was tolerating the chemo. My brother and dad had lots of trouble with infections during treatment, so I was understandably worried about picking up infections. I was careful about hand hygiene and avoiding anyone who was unwell. 

I had another PET scan and was told the chemotherapy was working. It was positive news, and given my family history, I felt very emotional. 

I had my last dose of chemotherapy the day the 2018 World Cup started. I am a big football fan and being able to watch every game was certainly a plus. I made the most of it and really enjoyed watching them all!

My treatment plan had always been to have an autologous stem cell transplant using my own stem cells. A PET scan scheduled for about 6 weeks after the last dose of chemotherapy would tell if the chemotherapy had been successful. Although I was apprehensive about having the stem cell transplant, I was even more worried that the chemotherapy hadn’t fully done its job. 

The days leading up to the PET scan were difficult. We decided to go away as a family for a short break, and hoped it was a chance to relax. But it was a mistake, and all it did was spread the anxiety between us. 

I eventually had the PET scan, and it was the best news, the chemotherapy had worked. I had my stem cells harvested in late July 2018 in readiness for the stem cell transplant the next month.

I was in no doubt the transplant was the right course of action.

By the time of the transplant I was feeling better and stronger. I was in no doubt that the transplant was the right course of action, but I was very anxious about it, and knew it would be physically challenging. My eldest son is a nurse, and during his degree course he spent time in a stem cell transplant unit, so we had some idea of what was involved.

I had LEAM chemotherapy, which is a high-dose chemotherapy called ‘conditioning’ every day for 6 days, and then my stem cells were given back to me. I felt progressively worse as the days of treatment went by. I developed mucositis (ulcers in my mouth, throat and digestive tract) which made eating difficult, and I also had very bad diarrhoea. Over the next three weeks I lost a stone and a half. 

As expected, my blood counts dropped, and I found the days when I was neutropenic frightening. I was again worried about picking up an infection. I was in hospital for almost 3 weeks feeling progressively worse, but suddenly my blood counts began to recover, and I began to feel a little better. 

I was allowed home fairly soon after that, even though my blood counts were still low. To be honest, I didn’t feel ready to go home. I was still nervous about picking up infections and was still struggling with diarrhoea. The mucositis had all but gone, and I was eating again, but my sense of taste was weird. I couldn’t taste anything sweet and lots of savoury things tasted very different.

My energy levels were low. Recovery was slow, and not every day was better than the last. There were times I felt like I was going backwards. 

My energy levels were low, but I tried to get outside and walk a bit, even in the early days at home. I began to feel better, but it was slow, and not every day was better than the last. There were times I felt like I was going backwards and my energy levels weren’t getting higher. But I was getting better and I just needed to be patient.

I began a phased return to work at the beginning of January 2019, and initially worked from home. It was good to be getting back to normal, and I was keen to do so as quickly as possible. I thought it would bring closure to my lymphoma experience. By the end of March, I was back to working 5 days a week, commuting to London occasionally. 

By early May I realised I was struggling. I felt very tired, still had some digestive problems, and also could not achieve the closure to my lymphoma experience I wanted. I spoke to a psychological nurse who helped me to think about my life after lymphoma.  I needed to adjust my work life balance. 

Work were really helpful and we realised that the old normal was not going to be the new normal. At least not for now.

Work were really helpful and I think between us we realised that the old normal was not going to be the new normal. At least not for now. I am now working less, and Yvonne and I are enjoying this new phase of life together, that at the beginning we thought we might not have, and whilst I’m not sure this is the forever normal, it’s normal for now.

Owen’s family history of lymphoma

For most types of lymphoma, there are no clear causes. Lymphoma is not inherited – it is not passed from parent to child. 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. This increased risk is usually not linked to a particular gene. Research suggests the increased risk may be caused by inheriting several polymorphisms (variants of a gene that can affect the way the gene works) that all contribute a small increase in risk. These polymorphisms are often in genes of the immune system. 

Owen is currently participating in a genetic project and it is hoped that such studies will help understanding in the future.

If, like Owen, you would like to share your story, email publications@lymphoma-action.org.uk