Nick

I was 40 at the time with two young children under 9 years old. I started to have a pain in my stomach which I noticed when I crouched down to wipe our dog’s paws. I could feel it on my right side at about the same level as my belly button. The pain wasn’t excruciating but it was annoying and didn’t feel right. I let it go on for about 2 months before I visited a GP in April 2023. I was told that it was most likely gallstones and the GP said she would send a letter to organise an ultrasound scan for me. 

By June 2023 I had heard nothing, so called the hospital who said I had been sent an appointment but had not turned up. They had my old address, and it was frustrating to have to go back to my GP to ask for another referral as it’s so hard to get a GP appointment these days. That same month my youngest brother got married and I noticed more signs that something was wrong with the pain in my stomach. In the evening of the wedding, I put my 4-year-old son on my lap as an excuse not to dance. I was in pain and didn’t feel like dancing would be possible. In addition, I found that drinking alcohol was uncomfortable and I had no interest in it. 

By August I was feeling awful. I couldn’t eat and the pain was more regular and difficult to manage. If I stood up from the settee I would feel lightheaded, and I struggled to do things I had once found simple, like hoovering the stairs.

My wife said I should go to A&E, but I didn’t fancy waiting for six hours only to be told it was gallstones! She persisted and, to placate her, I rang 111 and got an appointment with an out of hours GP on a Sunday evening at my local hospital. I was due to go on a 3-day course with work the following day and I felt in no fit state to do anything by this time. My wife came with me to the appointment and the doctor asked her if I usually looked yellow, which prompted him to organise a urine sample as he thought it could be connected to my kidneys. I left with a prescription for painkillers, which I took immediately. 

The doctor called me back a couple of hours later asking me how I was feeling and I told him the painkillers had no effect. He told me to go to A&E and said he would get a letter to them. I went at 10.30pm on Sunday night.  

Waiting in A&E I started to feel really unwell. I started sweating and thought I was going to pass out. I caught the attention of the nurse who organised for me to lie down. I was told that my blood pressure was very low and that it appeared to them as though I was bleeding internally. I had a CT scan at about 3am and shortly afterward the A&E doctor came in with another doctor in a suit who started talking about bowel cancer. He asked whether I had a family history of bowel cancer and then explained that the scan had revealed a huge tumour on my bowel which was why I was in so much pain. 

On the Tuesday morning I had surgery called a helicolectomy, a procedure where part of the intestine or colon is removed and the healthy parts are stitched back together. They had tried to remove the tumour using keyhole surgery, but it was so big the surgeons ended up cutting my stomach open and I now have a ten inch scar running from the middle of my stomach to the top of my groin. I was told that the surgery was successful, yet they would have to wait until the biopsy results were back before telling me the next steps.   

At the time, I was mentally preparing myself for being told that I had bowel cancer, which was unbelievably difficult. I was discharged from hospital on the Saturday, and I was so happy to be home, as this was the day after my son’s 5th birthday. My wife’s 40th birthday was just around the corner too. 

I tried to occupy myself as much as I could, however, I was in pain following the operation and could barely do anything. I found this so difficult. I’d never been ill before and never even been in hospital. 

I could not look at pictures of my kids. It was too upsetting. I was starting to think that I might not be there for their next birthdays, not see them start school, or teach them to drive. I didn’t want to ruin their lives.

I had prepared myself for a bowel cancer diagnosis and it seemed everyone had come to that conclusion. On the day before my wife’s 40th birthday, I got a call from the hospital telling me it wasn’t bowel cancer, but that I actually had lymphoma. I remember my first reaction was: ‘What is lymphoma?’ It was explained that it was a type of blood cancer. 

The diagnosis of diffuse large B-cell lymphoma was sort of a relief. 

Nick

The diagnosis was now a sort of relief and meeting my consultant was really reassuring as he was one of the nicest people I have ever met. He explained I had stage 4 diffuse large B-cell lymphoma, which is a type of high-grade non-Hodgkin lymphoma. 

I had a bone marrow biopsy six days later which I was petrified about. It was actually not that painful, just uncomfortable, but I remember asking the doctor and nurse if it was okay to swear in front of them!

I started R-CHOP chemotherapy at the end of September and completed my sixth and final session on 11 January 2024. Chemotherapy was given in the day unit, and I got there early so that I could pick my seat in the corner as I did not want to talk to anyone and wanted to be on my own, which is quite common for me. 

My friends would ask me what chemotherapy was like. I had to put it in terms I knew they would understand. 

Nick

My friends would come and see me, when they were feeling well enough, as we had to be careful around me potentially becoming unwell. None of them had known anyone who had gone through chemotherapy and they would ask me what it was like. I had to put it in terms that I knew they would understand. I told them, that to me, the days after the chemo was like the worst hangover I had experienced. I felt sick, hot, cold, had a headache all the time, tired and could not sleep, all in the space of 24-36 hours. By the end of day three (post chemo) I started to feel better. 

The week after my chemo, I would have to inject myself in my stomach to boost the productivity of my bone marrow. For me, this was the worst part. Three days after starting the injections, all of the major bones in my body would ache - my knees hurt, my legs hurt, my back hurt, my hips hurt and my chest hurt. I could not get comfortable in bed and would usually fall asleep in a chair in my living room which then made my neck hurt! The effects of the injections would last around a week, so I'd feel relatively well for around seven days before going back to the chemotherapy ward. I also had a metallic and horrible taste in my mouth for the majority of the time and I must have gone through about 100 packs of cherry menthol chewing gum to just make sure I didn't have to taste that metallic taste! 

About two weeks after my second chemotherapy session, my hair started to fall out. I hated it. I wore hats all of the time and constantly apologised to my wife and kids in relation to how I looked. 

I had a PET scan mid February and an appointment on 29 February, which felt a memorable day for all sorts of reasons. I knew the results were completely out of my control but was delighted to hear that I had a complete metabolic response; the lymphoma had gone. It felt strangely unreal. I didn’t feel like celebrating and still don’t, 8 months on. 

At the moment it all feels like acting. 

Nick

Emotionally I am not the same person I was in 2023. It still hasn’t sunk in and I still can’t quite believe what I’ve been through in the last 12 months. I saw a counsellor who said I was suffering from PTSD (post traumatic stress disorder). I used to dream of retiring in my 60s and moving to the Cotswolds with my wife and as many dogs as I could manage, but all of that has gone out of the window. I still struggle to think about 10 years on from now and don’t think I will be here. I put on a brave face in front of my children and friends and family. At the moment it all feels like I am acting. 

I want people to know that it's okay if you still don't feel right - I don't, and everyone around me seems to have forgotten about it all. I'm still terrified of it returning and feel the next 2 years are so important. I am a worrier and am constantly thinking about what has happened to me and what might happen in the future. I dread having a twinge in my stomach. 

I didn’t have any of the classic symptoms of non-Hodgkin lymphoma and I found it really odd to be told that I wouldn’t be having routine CT scans in the future. I know this is something I just have to live with now. I used to get angry as I’ve never smoked and always tried to live a relatively healthy lifestyle, yet I still got cancer. I don’t get angry anymore as I feel that I’m starting to realise I’m lucky in a weird kind of way. I hate it that I don’t feel right, even when there are people out there who haven’t been given good news; I just can’t seem to shake these feelings.