Sarah Lloyd was 30 when she learned that she had breast cancer. After 18 months of treatment, she was given the all clear – but, at the turn of 2018, she was told that it had returned and spread to such an extent that it was now incurable. Here, Sarah, 38, discusses what it’s like to live with cancer, and what she hopes others can take from her experiences.
“One of the worst physical symptoms is being able to feel the tumour in my liver. I noticed it for the first time about six weeks ago. Then, I had to lie on my back and push firmly in to feel it. Now it sticks out from my sternum to my belly button.
In October 2012, I was 30 and my son, James, had just turned one. I was getting changed one day and felt a dull ache in my right breast. I checked and felt a hard lump quite deep. I didn’t think much of it – lumps are normal after breastfeeding. The GP agreed, but because it was large she referred me for tests.
I remember lying on the bed with the sonographer taking an ultrasound. She was chatting away – until she saw the image. Then she stopped talking.
As she took needle biopsies I remember fear creeping up and a tear escaping. I’d gone on my own and was beginning to regret it. In the waiting room I started to text my sister but deleted it. The breast care nurse sat beside me as I saw the consultant; I guessed that wasn’t a good sign.
The outlook was fairly positive, considering. It was the most common form of breast cancer, with good survival stats. I had two types of chemotherapy, a lumpectomy, lymph clearance, then a mastectomy and three weeks of daily radiotherapy before my ‘journey’ was over. No one actually mentioned it was my last session and there was no bell to ring. I went back to my car and burst into tears. James had just turned two.
In September 2015, 18 months after my last radiotherapy session, my oncologist confirmed I was all clear. But by December 2017, I was in another quiet waiting room. A nurse came and said, jovially: “He’s ready to see us now!”
Us. That’s when I knew it was bad news.
About a year after my last radiotherapy, I’d been to my GP with lower back pain and had felt a little ashamed as he told us there was nothing on the MRI I’d been sent for. A couple of years later, the pain got worse – after googling, I put it down to a new exercise regime. Months later it was worse again, and eventually I had another scan.
When they said there was cancer in my spine, I knew it was incurable. Cancer would kill me. It didn’t take long before I burst into tears thinking about my son. I had to wait until after the new year for the full picture: extensive bone metastases – so cancer in a lot of the spine, hips, pelvis, ribs and sternum, as well as a 1cm tumour on my liver and a shadow on my lung causing it to not fully open. My oncologist didn’t like to give a prognosis because it can vary so wildly. But six months ago I was told that, if I didn’t have more treatment, I had one to two weeks left. Since then, we don’t know, but my 2019 goal was to see Christmas.
I write this in January 2020. I’d expected to hear people’s new year resolutions and knew I wouldn’t have any because the only one that matters to me is to stay alive – not something I can control, unfortunately. What I hadn’t factored in was opening Facebook to see all the hope that the coming year would be better than the last. It’s a much-used sentiment, of course, but reading it brought home that there’s almost no chance this will be the case for me or my family. I’m likely to die before June, let alone 2021.
My current treatment gives me very sore flaky lips, itchy spots on my face and tummy, and a rash on my hands and between my toes. I have an almost constant, slow nosebleed. I’m having brief dizzy spells: I hope that’s the treatment, rather than the cancer going to my brain. I have an irritating cough – around nine months ago cancer around the entrance to my lungs felt very similar.
I also get very tired, like nothing I’ve ever experienced. I don’t know if this is the two years of treatment or the tumours stealing my energy. The increasing pain in my bones, however, is definitely cancer. The liver pain is changeable, from pressure to a sudden stab. Today it was a strong ache for about an hour that made me feel a bit sick.
But it might surprise you to know that I’m happy. I want you to know I still enjoy my life. Yes, I am terminally ill, but even when I couldn’t walk last year, when I was given weeks to live, I still enjoyed my life. I enjoyed time with friends, burning nice candles, listening to music, reading good books and imagining myself visiting the places in travel magazines.
That’s not to say it hasn’t helped me prioritise; my immediate family are my priority. For James, that means putting normality first with some memory-making fun (same for my husband Billy, actually). It means sometimes I don’t focus on my own enjoyment – if I do something expensive, for example, it feels selfish as I’m conscious they need money when I’ve gone.
In some ways, it’s teaching me to slow down, too. The day before Christmas Eve I realised I was getting ill, so I delegated some final prep to my mum and sister (Sarah of three years ago might have categorised this as a complete disaster!).
It’s not a straightforward thing, though – for instance, it was important to me that my family had good memories of this Christmas and so I ended up stressing about a rare argument with Billy – but generally I take every day as it comes and enjoy what I can. And, obviously, I do get angry and I get sad. The sadness sits in the middle of my chest, throbbing and painful. You’ll know the feeling. Everyone does.
There’s always a trigger. It might be someone asking me about how James is going to cope, or – and I’m not proud of this, but I’m being honest – seeing someone very old smoking or hearing a complaint about ageing.
When this happens, I allow myself to experience the sadness and have a good cry. I’ll carry it to bed and, thankfully, it lifts by morning (I feel very lucky that I don’t have mental health issues to contend with on top – about half of cancer patients do struggle). Seeing friends often helps, though I’m no stranger to less effective coping mechanisms such as a couple of drinks or buying something I fancy. It’s fine to feel it and acknowledge it I think, but it’s not worth dwelling on – the situation is horrible and I have no choice but to accept it. It’s not possible to curl into a ball, cry and sleep when you have a child, a dog and a husband. I don’t always want to show them how hard this is.
That said, it’s important to me that James knows what’s happening. We didn’t tell him initially, but I feel much better now he knows, even though it inevitably causes him anxiety. He has new questions every few days; I enjoy having the opportunity to help him understand and share his experience. I sincerely hope that the rest of my family discuss it directly with him too – I don’t want it to seem like I was the only person being honest. Society has a habit of pretending nothing is wrong, people so rarely talk about death in an open and honest way.
This year won’t be an easy ride, I know. I don’t think very far ahead these days, a week or two at most with pencilled-in plans. So much is uncertain – is my treatment working, do I have time to switch to another, will that one work? Could I get onto a trial? Will 2020 be a few weeks or a few months? We don’t know, but I have hopes.
I hope someone can take something from my experiences, whether that’s not putting things off, enjoying what you have rather than want, or taking every moment – good and bad – as it comes (trust me, the bad is easier to handle if you just focus on the immediate). I hope people get checked – catching cancer early is key. I hope people enjoy eating good food and being able to stretch without pain. Don’t waste time wishing you could change the unchangeable: it upsets you and achieves nothing.
And what have I learnt about myself? I’m determined and stubborn. I push myself too far. I’m pretty good at living in the moment. I still find the good stuff in life.
I have decided that life is all about love, if you can find it, and experiences. Yes, make moments count, but no pressure – it’s about appreciating those experiences. And don’t worry that life’s not always perfect, I think you need a bit of the bad stuff. Look at it like a wedding day: ultimately, it’s OK that stuff goes wrong – there’s a bigger picture.
Being ‘in the moment’ is my day-to-day aim. The next moment could be worse and you know what? It will be what it is, whether I worry about it or not. The past is a tricky mess too. What if I’d found the lump sooner? What if I didn’t have James when I did? What if I’d had a full scan when we were considering a second child and caught it earlier? We can’t change it, we only have ‘this moment’.”
As told to Amy Swales.
Images: Author’s own