Sarah's Lymphoma Story

I got married in May of 2018 and went on an amazing honeymoon to South Africa. A couple of weeks later I noticed I’d developed a cough which I couldn’t shift so went to my GP. It’s a long story but the doctors put it down to a ‘virus’.


I wasn’t getting any better so returned to my doctors’ numerous times to be fobbed off with various antibiotics for said ‘virus’. I still wasn’t feeling right; my cough was getting worse, bringing up unpleasant phlegm, was becoming more breathless and fatigued so returned to my GP again for I think the 4th time. The doctor I saw this time said it was ‘anxiety’ and made me feel I was making the whole thing up. By this point I’d also developed 2 little lumps on my neck, had become extremely swollen and puffy around my eyes, face and neck but managed to persuade the doctor to do a blood test.


A few days later I got a call to return to the doctor as the blood test showed raised white blood cells, indicating my body was fighting something. After seeing yet another GP, they thought I may have picked up something ‘unusual’ whilst on honeymoon and began testing for other things, like legionnaires disease. I was sent for a chest x-ray at the hospital and it was deemed I had a staph aureus infection, so yep, you guessed it…more antibiotics…return if no better in a few days. It was now around the 20th August or so. Unsurprisingly I wasn’t getting better, my doctor wasn’t sure what to do and the swelling around my face had spread down to my armpit. So, we returned to the hospital again and this time, due to a raised heart rate, I was kept in for various tests.


A couple of days later a young doctor came to me, closed the curtains and said something along the lines of ‘Are you sure you want me to tell you if it’s bad?’ My husband thought he was joking. He broke the news that I had a large tumour in my chest that was pushing against the superior vena cava vein to my heart, which was why I had become so swollen.


We were initially told it was a stage 2 blood cancer and to look at fertility options, but after lots more tests, it was found it was stage 4, as the cancer had spread to my chest wall and ribs. My final diagnosis was Stage 4, Diffuse Large B Cell Non-Hodgkins Lymphoma (DLBCL). I spent a few days in intensive care, before moving onto a haematology ward and having a PET scan. Due to the aggressiveness and speed the cancer was growing, they needed to start chemotherapy as soon as possible so unfortunately there wasn’t time to consider fertility options.


No one expected me to be diagnosed with Cancer, let alone at the age of 32, so it was a huge shock to everyone, including me, as I didn’t think I was that poorly! I was scared, worried, gutted and confused. There was so much information to take in and understand. I had no idea what to expect. However, the overwhelming emotion I felt at the beginning was guilt. I felt so guilty that me and my husband had only really just got married and then this huge bombshell was dropped on him. I kept saying sorry and that if he wanted to go; go. Thankfully he didn’t and he proved to be one of my biggest supports and rock throughout, along with my parents. My husbands’ mother, who lives in Ireland got straight on a plane and came over for a couple of weeks. She was a great support to my husband and my parents throughout. I really wouldn’t have got through without this support.


I had 6 rounds of ‘R-CHOP’ chemotherapy, 3 lots of intrathecal methotrexate, and 2 lots of high dose intravenous methotrexate. I then had 15 fractions of Radiotherapy to my mediastinum. We moved in with my parents for the duration of treatment due to my husband’s work commitments and no one wanted me to be on my own if he was away with work, but it was a great support everyone being under one roof, even if testing at times! I started writing a journal whilst I was going through treatment, (I’m probably not allowed to repeat the title I gave it here)! But I found it quite tiring writing so sometimes put my thoughts on Instagram. From the start I used the line ‘Let’s do this shit’, and to some extent, I think that helped me see it through. I just knew I had to go through this shit to hopefully come out ok the other end! There was obviously high’s and low’s; But overall, I think I was fairly lucky with side effects. Don’t get me wrong, I still had my fair share, like peripheral neuropathy, sore mouth, amongst others, infamous fatigue and chemo brain (and still do)! But I only had one bout of vomiting after chemo resulting in hospital admittance- it was horrid at the time but could have been so much worse. Eating sometimes was incredibly painful and hard work- but I got there in the end-even it took me a whole evening to eat dinner!


Things got harder towards the end of chemotherapy-everything affected me more. I think I’d almost put armour on at the beginning of treatment to help get me through, and some may think I appeared quite strong mentally through a lot of it- but they didn’t see the bad days. Towards the end of chemo, when the effects were heightened, it all came crashing down and I found things a lot harder mentally. I felt like my diagnosis had finally hit me.


A few weeks later, I started Radiotherapy which is often referred to as the lesser of the two evils! However, for me it wasn’t straightforward as I developed a heart problem and spent much more time in hospital than planned! The heart problem was hard to deal with both physically and mentally on top of everything and undergoing radiotherapy. It has thankfully resolved itself now but was very worrying at the time. I was relieved when my treatment was all over and was happy to ‘ring the bell’ to signal the end of treatment. I was certainly pleased to see the back of it but was exhausted from it all which unfortunately is a reality of life after cancer that some people don’t realise.


Life with cancer doesn’t stop when treatment stops unfortunately! It was now time to recover and a waiting game until my PET scan 3 months later. It took a few weeks to get over the incredibly painful heartburn from radiotherapy. The fatigue, ‘chemo brain’ and low immune system take a little longer to recover. I’m now just over a year officially ‘cancer free’. Life has returned to a ‘new normal’. Side effects improved over time thankfully. I can sometimes still feel fatigued, breathless, lightheaded and definitely find my brain doesn’t work as well! Life will never be the same- it will always be in the back of my mind- are any niggling pains anything? Will I relapse? But on the whole, life is very good. I am now able to go for a jog and will hopefully return to getting back on a horse.


I must remember what my body has been through and how far I’ve come in just over a year!



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