Sophie shares her experience of caring for Lewis, who was diagnosed with high-grade non-Hodgkin lymphoma. 

Sophie with Lewis

Lewis and I met nearly a decade ago, before online dating was even a thing. We’ve both always been ‘strong’ characters, and although our early stages were turbulent to say the least, something just clicked. Just six months after meeting, he quit his job, left his house share, and moved into my family home. A big part of our fast-paced, early relationship was instantly discovering many shared interests and a dream to travel.  

Having not long graduated from university, and Lewis a newly qualified plumbing and heating engineer, we got full time jobs, and spent a year saving hard to turn our dream into a reality. Yet throughout these twelve months, Lewis repeatedly became unwell with a series of nasty chest infections. They began with cold-like symptoms but would always manifested into more serious infections; green phlegm, a dry, recurring cough and feeling so unwell that he missed repeated weeks of work, each time taking longer to recover. The trips to the doctors mounted up, and he was prescribed course after course of antibiotics. After the fourth trip, we began to question what was going on, and wanted some answers as to why a previously fit, healthy, rugby playing 22-year-old was continually becoming so ill. 

Lewis was given a wide variety of diagnoses; from tonsilitis right through to hay fever. Satisfied with none of these, we finally managed to get him a blood test at our local doctors’ surgery. The conclusion was that at some point, he had contracted glandular fever, as the virus was remnant in his blood test results. This discovery was made shortly before we were due to leave for Australia after a year of saving and planning. 

It’s a very difficult time to look back on, as we were so full of hope that plenty of sunshine and fresh air would improve his health, and we tried our best to put any worries to one side. Over the course of three months spent travelling around in our little campervan, Lewis displayed numerous tell-tale signs of a cancer diagnosis, but this was so far off our radar as two young adults in our early twenties.

His appetite dwindled – it was 40 degrees, that’s normal, right? He lost a substantial amount of weight – lack of appetite, it’s boiling hot after all! Night sweats, soaking him through – it’s 40 degrees remember? He became breathless, fatigued, his fitness failing him. After surfing, he repeatedly complained of tightness in his chest, feeling as if he was being strangled. It wasn’t until my Mum flew out to Sydney to visit us, that reality began to dawn on us all. We had a wonderful couple of weeks together, but it was repeatedly interspersed with her concerns, and she made us promise to get Lewis straight to the doctors. She hadn’t seen him for three months, and could see the drastic difference in his health compared to when we had left the UK. 

We took Lewis to a walk-in doctors in an attempt to finally get some answers. We were taken seriously, and Lewis was immediately sent for an urgent chest X-ray. The doctor gave us an envelope with the X-ray images and told us to go straight to a hospital in Sydney where late that night, we were told Lewis had cancer. Two days later, we were on a flight back to the UK for him to begin chemotherapy immediately. After a barrage of blood tests, scans and biopsies, he was diagnosed with primary mediastinal diffuse large B-cell lymphoma, a type of high-grade non-Hodgkin lymphoma. 

Our entire lives, plans and dreams felt as if they had been snatched from under our feet. Lewis spent the next two years enduring treatment after treatment, trying to combat his aggressive form of lymphoma. We had to watch as our friends and family continued with their lives, whilst our weeks, months and then years became a blur of endless days in hospital wards. I felt helpless watching the person I love become a shell of himself; withstanding treatment after treatment, infection after infection, pain after pain. It was a lonely, isolating and utterly numbing time. I felt all I could do was to be there for him throughout every second of every day. As we had both quit our jobs before flying to Australia, I had no other commitments, so I spent every day by his side. I never missed a hospital appointment, I slept curled up on chairs in A&E, on camp beds in his hospital ward.

Lewis never wanted to be without me and my support, and so he never was.

It was a hard time. It became very difficult to let other people into the world we were living in, so we stopped doing so. Lewis rarely felt well enough to have friends spend time with him in hospital, and even family visiting became a rarity as he found it very difficult to cope with too much noise, or people asking lots of questions. I’m an inherently introverted person, so we both lost a lot of friends during that time. I had no emotional energy to dedicate to others, communication was hard; people knew the facts, but had no understanding of how either of us were feeling.

We were in our own little bubble, hiding away when things were bad, and putting on a complete front during any rare social occasions. Because of this, we were, and still are, totally reliant on each other. A couple that discusses every finite detail, runs every little thing past each other, whether we need to or not. In October Lewis will be five years in remission and we are slowly finding independence from each other.

My advice would be to let other people in. It's a hell of a lot to handle by yourself.

Friends won’t always know what to say, when to be there, or when to give you space. Family may not understand when you can’t handle another question, or when you wished they had asked about one thing in particular. But nine times out of ten, they wish they knew. So try to tell them. 

This June, we returned from 18 months spent travelling around Australia and New Zealand. Throughout 2020, in a year where time stood still for so many, and plans and dreams were put to one side, we were finally living ours.

It felt as though the universe had gifted us precious days we thought we would never get back. We spent over a year visiting every corner of Australia. Lewis bought two beautiful surf boards, spent hours in the water, not once complaining of a tight chest or difficulty breathing. We went back to the walk-in doctors, back to the hospital where he was diagnosed. We sat in the sunshine, and took the time to remember all that we had been through; all of the bad, and then how far we had come; all of the good. 

We’re back in the UK now, arriving home on our own terms this time. We have a beautiful Golden Retriever who we couldn’t wait any longer to be reunited with, and we’re now planning what’s next. We’re looking for somewhere to settle, somewhere much closer to our support network this time, but hopefully some place wonderful to bring children into the world. Lewis’ treatment means we aren’t able to do that naturally, but that means nothing as long as he’s here to be a father. We aren’t sure what’s next just yet, but we have health and happiness, and that’s just about all we need.