Christy

I got married in 2021 and our first baby was due in April 2022. About six weeks before our son was born, I noticed a lump in my neck above my collar bone on the left hand side. It came out of the blue with no other symptoms. Perhaps because of my background as a mental health nurse, my instinct was that something was seriously not right.

I went to see my GP who arranged for me to have a CT scan. However, I developed some abdominal pain, which resulted in me going to A&E. They initially thought it was kidney stones, but I told them about the neck lump and as I had a CT scan scheduled a week later, they decided to push it forward. The CT scan revealed some enlarged lymph nodes in my abdomen. They took a biopsy and while waiting for the results, I had several conversations with colleagues, and I had come to the conclusion that it was looking like lymphoma.

A diagnosis of stage 4 Hodgkin lymphoma was given to me just after my son was born. I knew Hodgkin lymphoma was a type of blood cancer, but even though I am a nurse, I really didn’t know much more. I know a lot more about it now!

Before starting treatment, I asked if we could talk about fertility. It was a slightly surreal experience as we had only just had our first baby, but we wanted the option of having more children in the future. We were referred to a fertility clinic, where we were asked a lot of very personal questions. I know my wife found it all very difficult but it was important to us to take this step. The procedure went well, and we have sperm banked for the future if needed, which feels good. 

Because of our wishes around fertility, it was decided to start with ABVD chemotherapy (doxorubicin (Adriamycin®), bleomycin, vinblastine and dacarbazine) which has a lower risk of reducing fertility than other regimens. I managed the chemotherapy pretty well, although had problems with my cannula (a thin, plastic tube that passes medicine into the body) which meant I needed to have a PICC line.

After four cycles, a PET scan was arranged to find out how things were going. The consultant said that some areas were improving but others were getting worse and that they really needed to move to a more aggressive treatment.  As a result, my treatment was switched to BEACOPPesc (a high does regimen of bleomycin, etoposide, doxorubicin (Adriamycin®), cyclophosphamide, vincristine (Oncovin®), procarbazine and prednisolone) which was definitely not as kind. After two cycles of the new regime, a scan showed that the BEACOPPesc was working, but not as quickly as they had hoped and not all the cancer had disappeared.

I was kept on BEACOPPesc for another six weeks (two cycles), finishing treatment in October 2022. So far, I hadn’t had many problems with the chemotherapy until the last cycle where I developed  hemorrhagic cystitis (a condition in which the lining of the bladder becomes inflamed and starts to bleed, meaning that blood can be seen in the urine). I was hospitalised just before my last treatment and ended up in there for 3 weeks just after finishing treatment because of this.  

I had to wait eight weeks for my end of treatment PET scan which was an anxious time. The scan was clear but something was showing up in my neck. Because it was only in my neck, they carried out another core needle biopsy. Mentally I was preparing myself for more treatment, and I think my consultant was preparing me for the next step too. But amazingly the biopsy showed that the lump was inflammation, not lymphoma.

It was agreed that the rest of the lump would be removed and I had an excision biopsy, which also came back as clear. But it didn’t feel like a moment for jumping up and down with glee; it all still felt fragile. Emotionally it’s been a bit of a roller-coaster. Having gone through periods during treatment when things were not working well, you start to have morbid thoughts. When things change, and things are looking better you feel like you have another chance. I am quite an anxious person who worries about their health, so It’s been a really difficult time for me, but one where I have come out feeling much more optimistic. 

The last few months have been a really strange reality. My family have been brilliant throughout and my mum, who is also a nurse, took me back and forth to my appointments and treatment. My best man Kyle has been a constant support and ran the London Marathon in April 2023 in support of Lymphoma Action. The Lymphoma Action Facebook group have also been a tremendous source of support where I have been able to connect with others going through a similar experience.

My remission was officially confirmed on 23 February 2023. In my experience life can be difficult post-cancer and its treatment. It’s a time you want everything to return to normal and you want to try and forget everything that has happened. Unfortunately it doesn’t go like that and you have up and down days. I’ve had to try and learn the practice of patience and to go easy on myself about everything that has happened.

I also think it is so important that family and carers (my wife in my case) must look after themselves as much as possible. Often the toll cancer can take on them is forgotten or overlooked.

Having a baby in the midst of a lymphoma diagnosis has been difficult, but I think both my wife and I would say that having a baby has given all of us another focus; such a positive one!

Christy talks about the importance of blood and platelet donation

Before my final chemotherapy, I needed so many pints of blood and platelets. I have been fortunate that on each occasion they have managed to get some, but there have been delays. If anyone reading this has family members who may be able support with blood donation, or can do so themselves, I would encourage them to get in contact with Blood.co.uk.

Christy shared his story with us as part of our Let’s talk lymphoma awareness campaign which ran throughout Blood Cancer Awareness Month in September.