My cancer story started on 16 December 2020 when I noticed a lump on the left side of my neck, just under the ear. I asked my wife to check if it was a lump or whether it was just my imagination. She felt my neck and said ‘Yes, it’s a lump’. I contacted the doctor and was advised to keep an eye on it. He explained that it was probably an enlarged lymph node and told me that if the lump hadn’t settled down within a couple of weeks, then I should contact the surgery again.
As we went into 2021 the lump was still there, so I contacted the doctor again and was asked to come in so they could examine me. Pretty much straight away the doctor said he would refer me for tests.
An appointment came through from Ear, Nose and Throat (ENT). Waiting for the appointment seemed to take forever; I felt quite anxious at the time, not knowing what’s going to happen and more importantly what they were going to find.
At the appointment the doctor felt all around my neck and said he was going to examine my mouth and throat and then look down into my voice box via a camera up my nose. This didn’t sound very nice but to be honest it wasn’t painful as such, just a bit uncomfortable. He couldn’t find anything worrying but was concerned about the lump, so explained he would be referring me for an ultrasound and possible biopsy and blood tests.
An appointment came through for the ultrasound. I was hoping that the ultrasound guy would say you don’t need a biopsy, but he didn’t. Three biopsies were taken and although not painful, I do remember it being a very loud process.
I knew the results would take time to come through and was told I would be contacted on the 10 February 2021 via telephone. I kept myself busy and then on the morning of the 9 February 2021, I received a call and was asked to go in for a face-to-face appointment. I remember asking if I could receive the results over the phone rather than having to wait another 24hrs of not knowing, but guessing, what the results would be.
I was told over the phone that the biopsies showed I had lymphoma. I was asked if I knew what lymphoma was, and I said that all I knew was lymphoma was a type of blood cancer. I was told that an appointment would be made for me to see a consultant in the haematology department where everything would be explained to me in more detail.
My world just changed in a matter of minutes; I couldn’t believe what I was hearing. I had to hold it together as I was at work when I received the phone call and all I remember is saying to myself, ‘Don’t lose it, just pack up and go home’. How I managed to drive home I don’t know.
My wife knew straightaway that something wasn’t right. She knew I was anxious waiting for the call scheduled for the next day. I surprised myself as I thought I would breakdown, but looking back I was quite strong. Yes, I was emotional, but I was bearing up quite well under the circumstances. The next step was to let our daughters know (Lindsey and Rebecca) who were both very supportive. This was a difficult time as I didn’t want them to worry.
An appointment came through for me to see a consultant who I met along with a clinical nurse specialist. I was told I had follicular lymphoma, and they explained that it’s treatable but not curable. I would need to have a scan to see if the lymphoma had spread and that once they had the full picture we could discuss what course of action to take.
The scan results came back, and the lymphoma was classified as stage 3. The lymphoma was in my neck, chest and abdomen. Discussions with the consultant were around active monitoring rather than treatment, because the lymphoma wasn’t giving me problems and was a slow growing type. He explained there was no need to start treatment until it became problematic. This was difficult for me to digest; all I was thinking was let’s start treatment straightaway and deal with the cancer.
As soon as the nurse explained the reasoning behind active monitoring it all made sense. I would have regular check-ups and blood tests and would be monitored throughout the active monitoring period. I was handed books to read and given details of Lymphoma Action.
I was quite curious and wanted to read up more on what follicular lymphoma was and the information on the Lymphoma Action website was and still is invaluable. Throughout my journey I have always used the website for support; I enjoy reading the personal stories, which have inspired me to write my own.
From my own experience I would not recommend using Google to find medical information; there is a lot of misinformation on the internet. The only sites I would recommend are Lymphoma Action, Macmillan and the NHS.
I was on active monitoring for 14 months and during this time I felt well and was continuing to work, I found it hard at times that I was feeling ok and yet I had a type of blood cancer.
During the last month of active monitoring, I started to suffer with sciatica which lasted for weeks. Following results of a scan it was noted that I had an enlarged lymph node which was pressing against the sciatic nerve and with the lymphoma now becoming problematic, it was recommended I start treatment.
The treatment regime was chemotherapy with an infusion of rituximab every 4 weeks for six months. My treatment started in July 2022 and finished in December 2022. I found the treatment difficult at first, mainly suffering with nausea and feeling tired. I gradually started to look forward to the treatment day, knowing the reason why I needed treatment and seeing familiar faces. Talking with people who are going through a similar situation really helped me come to terms and accept that my life wouldn’t be the same as before, but a new chapter will begin.
On ending treatment I do recall being quite emotional. I rang the bell 3 times (with my two grand kids there) to signify I had finished my treatment. All the nurses cheered and clapped, which was quite overwhelming. I remember during my treatment hearing the bell ring and feeling rather proud that one of my chemo colleagues had finished their treatment which was quite empowering.
Because I responded well to the treatment and am now in remission it was discussed if I should have the maintenance therapy (rituximab injections) every 8 weeks for two years, with the aim of keeping me in remission longer.
At time of writing this, I have had 10 injections and feel fine. I still get tired (now having 3 grandkids does this to you) but now I know when to rest and know how important it is to eat healthily and exercise regularly.
I’m quite optimistic on what the future now holds for me and my life has changed so much since I was diagnosed, I don’t take things for granted and have become more mindful; I now enjoy every moment, knowing how fragile life can be.
I will be forever grateful to my haematology team, Lymphoma Action and of course my family. I don’t think I would have coped without them.