Meet Sarah…

Sarah, Non-Hodgkin lymphoma

young woman lymphoma

When were you diagnosed and what with?

I was diagnosed with Stage 4, diffuse large B-cell Non-Hogkin Lymphoma (DLBCL) in August 2018.

How did you find out you had cancer? 

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 local GP. It’s quite 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 getting any better; my cough was getting worse, I was coughing up an unpleasant phlegm, becoming more breathless and fatigued so returned once again to my GP for I think the fourth 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, and had become extremely swollen and puffy around my eyes, face and neck, but I managed to persuade the doctor to do a blood test. 

A few days later I got a call to go back to the doctor as my blood test showed that my white blood cells were raised, indicating my body was fighting something. After  seeing yet another GP, they thought I may have picked up something ‘unusual’ while on honeymoon and began testing for a couple of other things, such as Legionnaire’s disease. I was sent for a chest x-ray at the hospital and it was deemed I had a staph aureus infection for which I was given yet another lot of antibiotics. They said to return if no better in a few days. Unsurprisingly, I wasn’t getting any better, my doctor wasn’t sure what to do and the swelling had spread down to my armpit.  So, we then returned to the hospital and due to a raised heart rate, I was kept in for various tests. It was a couple of days later that a young doctor came to me and 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 possibly a stage 2 cancer, but after further tests, it was found I had stage 4, as the cancer had spread to my chest wall and a couple of ribs. I was told to look into fertility options but then due to the aggressiveness and speed the cancer was growing, they wanted to start chemotherapy as soon as possible and unfortunately there wasn’t time to look into fertility options.

What did you think and feel when you were diagnosed?

Initially extremely shocked, 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 I couldn’t understand it all. I had no idea what to expect. But 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 I dropped this huge bombshell on him. I kept saying sorry and that if he wanted to go, he should go. Thankfully, he didn’t and he proved to be one of my biggest supports and rock throughout, along with my parents.

How did the people around you react?  

Obviously, my immediate family were all very upset, shocked and concerned, as were my closest friends. None of us were expecting a cancer diagnosis, let alone an advanced, stage 4 diagnosis. My husband’s 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.  

What treatment did you have? 

I had six rounds of what they call ‘R-CHOP’ chemotherapy, three lots of intrathecal methotrexate, and two lots of high dose intravenous methotrexate. The methotrexate was used  to help prevent the disease spreading to the central nervous system. I then had fifteen fractions of radiotherapy to my mediastinum.

How did you feel through treatment? 

There was obviously highs and lows, but overall, I think I was fairly lucky with side effects. Don’t get me wrong, I still had side effects such as peripheral neuropathy (numbness in fingertips), sore mouth, among other more unpleasant ones and the infamous fatigue (and still do)! It was awful at the time – but I only had one bout of vomiting resulting in hospital admittance. I struggled more towards the end of my chemotherapy; everything affected me more particularly after my final round of chemo. 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. I then had radiotherapy which is commonly referred to as the easier of the two (or the lesser of the two evils)! However, for me it wasn’t as straightforward as it should have been due to developing a heart problem. 

The side effects I found the worst throughout the whole thing were having an incredibly sore throat after the methotrexate; eating was really painful, slow, and hard work. I had very painful heartburn during radiotherapy, again making eating very difficult and painful. The heart problem was hard to deal with both physically and mentally on top of everything and undergoing radiotherapy. It thankfully has resolved itself now, but was very worrying at the time. ‘Chemo brain’ is also definitely real too! It’s hard to explain but I really struggled to think straight sometimes. I remember trying to write a Christmas card and it took me about five attempts to get it right!

What happened after treatment finished? 

I was relieved when it was all over and was happy to ‘ring the bell’ signalling the end of all my treatment. But I was suffering with the side effects of the radiotherapy and it had been quite an ordeal with the heart problems I‘d had. 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!

How did you get involved with Shine? 

While having treatment, a lot of the other patients I came across were much older (not that I have anything against older people!) but I looked on the internet and Facebook for organisations that support younger people with cancer and came across a couple of charities, one of them being Shine.  Shine sadly doesn’t  have any meet ups local to me, but it’s more knowing they are there if I need them, and that there are always things going on that I can get involved in.  I would definitely like to get involved in some fundraising and meet like-minded people in the future.

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?  

I don’t think anyone expects to be diagnosed with a life threatening and life changing disease in their early thirties and it certainly gives you perspective! People always say you shouldn’t take things for granted as you never know what may happen, but it is only when you are actually forced into a situation like this that you realise the truth behind it. It has made me appreciate simple things more: health, family and friends. I feel grateful and thankful that I have all three of them. I’m now approaching a year since I finished treatment and still get quite tired/fatigued. One of the things I struggle with most now is remembering what my body has been through and to not to do too much. Learning to listen to my body when I need a rest! 

If you could give one piece of advice to yourself before your diagnosis, what would it be? 

Try not to sweat the small stuff in life. They don’t really matter in the scheme of things. And also, to enjoy life.