I first went to my GP in December 2023 after I noticed a small lump in my neck. The doctor wasn’t overly concerned but said they would arrange a scan to put my mind at rest. I ended up moving house and unfortunately the appointment letter got lost with the move, so I wasn’t able to attend. But by May 2024, the lump had got noticeably bigger and I was struggling to get a full breath. I managed to get an appointment for an ultrasound scan which confirmed a lump that was putting pressure on my trachea and affecting my voice.
I was initially referred to the ENT department and they thought I had vocal cord paralysis. I wasn’t happy with this, as to me it didn’t explain the struggle I was having with breathing and eating.
My symptoms worsened, and I was eventually sent to A&E as I was struggling to breathe and had no voice. I underwent a fine needle aspiration biopsy, and the doctor explained that the lump was crushing my windpipe and that I might need a tracheotomy. I felt really scared at this point. I was given steroids and this started to make a difference as I could breathe a bit easier. I then went on to have further scans and a core biopsy while in hospital.
Shortly after, I was told by a team of ENT and haematology doctors that they suspected I had cancer. At that point, they were unsure as to what kind, but they did say they thought it could be a type of lymphoma. I was shocked, and I had never heard of lymphoma.
As my breathing had improved with the steroids I was told I could go home but that I would need to come back for a PET scan. I was told I would need to stop taking the steroids so they could get more of true reading of the size of the tumour. I came home on a Friday with no steroids and had a lung function test and PET scan booked for the following week. On my way for the lung function test, I was struggling to breathe again. My doctor called to advise that the scans and tests I’d had to that point confirmed I had a form of lymphoma. Thankfully, I was put back on steroids due to the struggles I was having with my breathing.
After further tests, my diagnosis was confirmed as stage four diffuse large B-cell lymphoma of the thyroid gland with bulky disease in the mediastinum and upper airway. I was told I would need six rounds of chemotherapy and I would lose my hair. At that point, my husband and I told our children who were seven and twelve at the time. I then had my first chemotherapy session a couple of days later.
I actually felt OK after the first round of chemotherapy and remember thinking to myself ‘this isn’t too bad’. Each chemotherapy round would take a full day, but the nurses at the chemotherapy day unit were lovely and made me feel as comfortable as possible. During my second round the chemotherapy leaked in my hand and caused my hand to swell. It was really painful and I was given antibiotics to try and help. I ended up having a PICC line fitted in time for my third treatment. At this point I had lost my hair and although I was given a voucher towards a wig, I struggled to find one that suited me and that was comfortable, so I lived in head turbans. I was also struggling with side effects including fatigue, sickness, constipation and bone pain. I found it hard to stay awake whilst having chemotherapy, and it gave me a fuzzy feeling in my head and face. My taste changed whilst having treatment. I used to love coffee but couldn’t stand it for a while, although this has passed now. I remember carrying pear drop sweets with me to try and help with the constant metallic taste I had in my mouth. It’s strange thinking back and remembering the things I’d forgotten about!
I had my mid-point scan which confirmed there was no sign of cancer which was amazing, but I still had the three rounds of chemotherapy left to complete. Each round became harder and at points I felt like I couldn’t carry on, but with the support of the people around me I did. I really couldn’t have got through it without my incredible husband who came to every appointment with me, and my amazing children who were so strong the whole time and never complained once. I’m also incredibly grateful to my family and friends who were always there for me, and my work family who went above beyond what they needed to. The fight was certainly made that bit easier with them behind me.
I finished my last round of chemotherapy in October 2024 . The feeling of ringing the bell once treatment ended was incredible and getting my PICC line removed was such a high. Soon after treatment finished, I was told I had gone into a medical induced menopause. I struggled with severe hot flushes and night sweats and I was put on HRT to help ease the symptoms.
As I write this in March 2026 I still struggle with severe fatigue, breathlessness and pain. I am awaiting some further tests and referrals to try and get to the bottom of what is going on and have telephone appointments with my consultant every three months. Although I have had scans and another biopsy which confirmed no relapse, I have found the recovery from treatment really hard at a time when I thought things would start to improve. My consultant has been great and is very supportive in helping get to the bottom of why I am still struggling, but it’s hard as all I want is to go back to how I was pre-cancer. It’s taking some time to adjust to a new normal, but I am hopeful that I will one day.