What It Feels Like… to have incurable cancer

Most people born in the UK today can expect to live until they’re about 80.

Having been diagnosed with incurable breast cancer some 18 months ago, aged just 55, I’ll be lucky to make it to my 60s.

How do I deal with that knowledge? I find ways, otherwise I would go mad worrying about it all the time. 

I was first diagnosed with primary breast cancer in the summer of 2015 after I noticed a lump and other changes in my right breast. Over the following seven months, I had chemotherapy, followed by a mastectomy and the removal of the lymph nodes in my right armpit, and radiotherapy.

I finished active treatment in February 2016. At that point, you’re deemed to be ‘cancer-free’, but lots of people, including me, don’t like and don’t use that phrase.

We prefer the term ‘no evidence of disease’. Although treatment can get rid of all the cancer that can be found, there’s always a chance that undetected cells have or will spread to other areas of the body.

The cells lie dormant and, in some cases, turn up as active cancer later. This happened to me just over three years after my initial treatment finished.

It is known as secondary, metastatic, Stage IV, advanced or late-stage breast cancer. It can’t be cured.

For me, the initial breast cancer spread to my bones and bone marrow. I received my secondary cancer diagnosis after I followed up on some back pain I’d been having.

The later the stage of your initial diagnosis (basically how big the tumour is and whether it’s spread to the lymph nodes), the more likely it is that you’ll develop ‘secondaries’ down the line. I was Stage III when I was first diagnosed, so I knew I was high risk.

No-one recovers from secondary breast cancer. It can be treated but it will kill you eventually – unless you die of something else in the meantime.

Some women live for many years with the disease but data indicates that 50% die within three years of being diagnosed.

You have no way of knowing which camp you’ll fall into.

My oncologist told me a year ago that she’d be disappointed if I didn’t have at least another five years left. Initially, it was all I could think about.

I have a husband and two young-adult sons, and I was engulfed by a wave of sadness every time I heard one of my boys call me ‘mum’. I’d wonder how much longer I’d be around for them to be able to say that. It was the same with my husband calling my name. 

Now, rather than letting the sound of the words pain me, I let them sweep over me like a comforting blanket.

I try to focus on the present instead of on the future. ‘Never borrow tomorrow’s sorrow’ – this was the advice from a member of an invaluable online support group I’ve joined. It’s a good way of looking at it. 

Lots of people experience periods of intense sadness and are still happy in the long run. There are no guarantees in life for any of us, other than that we will all die at some point. That fact helps keep me grounded.

Sometimes if I’m out and about and I start thinking dark thoughts, I look at the people around me and think that any one of them could be dead tomorrow. That may sound odd, but I find it helpful. They’re not all walking about worrying about when and how death will come to them – so I don’t have to either .

I have to work hard at building up my resilience. That doesn’t mean you simply pretend everything’s fine when it’s clearly not – it isn’t just a case of having a positive attitude.

For me, resilience means accepting and acknowledging my situation, allowing myself to be angry and sad and scared, while at the same time knowing that those feelings needn’t take over and override every other emotion.

The facts are there, as a backdrop to my life. I can’t escape them, but I do try to ‘live alongside my cancer’, as one of my doctors puts it. That’s my aim, for me and my family. 

Both my husband and I have been open about the situation with our sons, as we don’t want them to worry that we’re hiding things from them. We keep them up to date with how my treatment is going, but I really hope that for most of the time, at least, my situation takes a back seat in their young lives. 

I also hope they feel they can talk about it – if not to us, then to whoever they think will be able to listen well and provide comfort.

At the moment I am in no pain from the disease. My hair gets thinner by the day, my nails are a mess and the occasional pain I get in my feet can stop me from sleeping. Other than that, I feel incredibly healthy. 

Coronavirus restrictions permitting, I swim, walk, cycle and play tennis. My immune system is weak due to the cancer itself and the treatment I’m on, so I do have to be careful. 

With regard to the pandemic, I’m far from reckless but I am out there, trying to make the most of things. Recently, I walked much of the Hadrian’s Wall Way, covering 68 of the 84 miles in six days, and my husband and I have just spent 10 fabulous days travelling around northern Greece.

I currently take oral chemotherapy tablets in the morning and evening, one week on, one week off. I have a monthly injection of a bone-strengthening drug as well as regular scans. I have monthly blood tests, then I see my consultant to discuss the results and how I’m managing any treatment side effects.

At the moment, the cancer is restricted to my bones and bone marrow. At some point, it is likely to spread elsewhere. Things can change from one month to the next.

There’s no right or wrong approach to dealing with a diagnosis such as mine. At the moment, acceptance and pragmatism work for me. It’s not easy but I carry on, taking each day as it comes and dealing with the good and the bad.

I seize the moment when I can, give thanks and relish the life I have – as well as the many, many wonderful people I have in it.

You can find Maureen’s blog here. The lead photo was taken by Mallorca Cycling Photos.

The Institute of Cancer Research, London, is currently fundraising to complete its new Centre for Cancer Drug Discovery, which will house the world’s first drug discovery programme focusing on tackling cancer’s ability to evolve and develop resistance to drugs. You can support its appeal here.

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In this exciting new series from Metro.co.uk, What It Feels Like… not only shares one person’s moving story, but also the details and emotions entwined within it, to allow readers a true insight into their life changing experience.

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