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A diagnosis of diffuse large B-cell lymphoma and the challenges for a young family.

Alex and family

Like so many other people diagnosed with lymphoma, my journey began with what felt like pretty mundane symptoms. Around December 2021, I felt run down with a cold and blocked sinuses which just didn’t get better. I put it down to a head cold for a month or so, before I went to see my GP in January 2022, who said I probably had sinusitis. I was given a steroid nasal spray and antibiotics. I went back and forth to my GP without any improvement throughout the Spring of 2022. My GP referred me to ENT at the hospital, which was expected to be a few months’ wait, however, in April 2022, I began to suffer visual disturbance and double vision which stopped me from driving. My GP referred me for an MRI scan and sent for an urgent ophthalmology review. 
Given my worsening symptoms across a number of months and the prolonged wait for an ENT appointment at the hospital, I took the advice of friends who said I sounded terrible and booked to see an ENT doctor in a private clinic. The ENT doctor tried to pass a scope up my nostril. He couldn’t push it through as there was a blockage. He said that he could feel a lump pressing through my palette in my mouth and told me he was very worried and that he thought it was something serious. He told me that I would need an urgent biopsy of the lump and a scan to get to the bottom of what it was.

ENT did a biopsy and the doctor said he thought it was probably cancerous and possibly nasapharyngeal cancer, which is a rare cancer that develops in the upper part of the throat at the back of the nose. 

I clearly recall the day I was told I had lymphoma as it was just before my 37th birthday. My GP had previously told me the scan results showed a large mass, approx. 8x10cm behind my nose. I’d researched nasapharyngeal cancer and felt very scared. I work as a Haematology Cancer Pharmacist, so was on familiar ground and felt a strange sense of relief when the doctor told me that the biopsy results indicated that I had diffuse large B-cell lymphoma. I knew there were good treatment options for DLBCL with a good chance of successful treatment.

The period of time going through all the diagnostics was when I felt at my lowest. There are so many unknowns and it’s hard to get into the frame of mind of how you can make things better.

I was referred to a Haematologist who organised a PET/CT scan. The scans revealed bulky disease within my head, pressing on my brain, but thankfully it had not spread anywhere else. I had a lumbar puncture to check whether the lymphoma had spread to my brain. Although it was pressing on my brain, it had not spread there. My consultant told me that the tests showed it to be diffuse large B-cell lymphoma (DLBCL) but it was showing aggressive characteristics, like Burkitts lymphoma. My consultant therefore recommended for me to undergo treatment with R-CODOX-M/R-IVAC. This is an intensive regimen which would require admission to hospital for 3-4 months. I also needed to have 12 intrathecal injections as part of this.

While my treatment was being planned was a very difficult time. My head was spinning and I couldn’t help thinking about the worst case scenarios. I have three small children aged 1, 4 and 7 and all I could think about was them and my wife. Our world was falling apart. Would they still have a dad at the end of this? I thought of all the things I wouldn’t be able to do with them over the next months. 

I had a hectic week after my diagnosis. I had to have various vaccinations and a PICC line fitted, so that my treatment could be given without the need for cannulas.

I was admitted into the hospital where I work on the weekend of the Queen’s Jubilee at the beginning of June 2022. For me this was really good because I knew all the staff and felt really comfortable in their excellent care. I’m biased because they are my friends and colleagues too, but the Haematology nurses are the best, most caring nurses around! They understand what people with lymphoma are going through and will do whatever they can to help them through their chemotherapy

At the start of my treatment, my goal was to be back home to see my 4-year old son start his first day at school in September. It was a real target for me. Physically I tolerated the treatment pretty well, although I struggled with appetite and lost weight and struggled with fatigue. I struggled with haemorrhoids for a prolonged time period throughout chemo too. Whilst your body is battered by chemo, they didn’t heal very readily which put me off eating as it really hurt when going to the loo.

As someone with a young family who is used to sleepless nights and early mornings, I thought I would manage the fatigue okay, but it is a very different sort of tired, where you feel wiped out by the afternoon. Mentally, however, I found this time in hospital and away from my young family really tough. My children came in to see me and I did the bedtime story via Face Time every day. 

I was discharged late August and was able to see my son start school, which I was thrilled about. I really needed this as I had missed Father’s Day, the kids’ sports day, our family holiday and all of the other plans we had made for the summer. My youngest had taken his first steps just before I was admitted to hospital, so I had been feeling quite down about missing out on experiences milestones in my kids’ lives.
In October 2022 I had an end of treatment PET scan which showed I had a complete metabolic response. My Haematologist referred me to the Radiologist to advise on whether or not to have consolidation radiotherapy. He was keen to adopt a ‘belt and braces’ approach. The radiologist talked it through as I was concerned about some of the risks associated with radiotherapy. The radiologist explained that because of my response to the chemotherapy, I would probably tolerate the treatment well and it would reduce the risk of the lymphoma coming back, as it had originally been localised on only one area of my head. 

It was a hard decision for me to make, but I decided to go ahead with the radiotherapy as I worried that if it did come back, I would regret not having the radiotherapy.

I had 15 sessions over 3 weeks in January 2023 and had to have a mask made to ensure the radiotherapy was targeted to exactly the right place. The mask was tight and uncomfortable but I realised the importance of it in aligning the beams, and it was manageable. In fact, I have the mask in my house now, but my wife doesn’t like it!

To begin with the radiotherapy was fine, but the effect builds up over time. I got bad mucositis and needed to have Ensure drinks to build me up. It took a while to recover from this and I had pain in my mouth and had a really sore throat for about a month after treatment had finished. 

I started back to work on a phased return and am now back at work full time having recovered from the side effects of the chemotherapy and the radiotherapy. 

What I am left with is a totally different perspective in life. I want to make the most of every day and cherish time with my family. Since my diagnosis and treatment we have done lots of things as a family, like a trip to Belfast, railway trips (my kids love trains) and even our first holiday abroad. When opportunities arise we take them and seize the moment! I want to make as many memories as possible with family and friends. 

I feel I am back to normal now. I have a scar where my PICC once was and my hair has grown back - but one of my cheeky son’s still says I’m bald! I haven’t explained to them that I had cancer or that I had lymphoma, as I think they are too young at the moment. But I will when the time is right. 

I wanted to share my story because I got so much from the stories on the Lymphoma Action website. Despite working in Haematology, it’s different when it is you that has the diagnosis and the rollercoaster of emotions takes its toll on all of the family. I found reading about others who have gone through diagnosis, treatment and recovery really helpful and hope my experiences can help others too and give hope.