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Will I see them graduate? One patient’s perspective on life with advanced breast cancer

22
Mar
2020

Maureen is 56 and is living with advanced, incurable breast cancer. Before the outbreak of coronavirus, she wrote a blog post about why she’s making the most of the life she has now. This is a very difficult time for many, but here at the ICR we’re doing everything we can to ensure our life-saving work continues, so that we can give people like Maureen more time to spend with their loved ones.

Posted on 22 March, 2020 by Maureen Kenny

Maureen Kenny cycling

Most mothers don’t wonder whether they’re still going to be alive in three or four or five years’ time to attend the graduation ceremonies of the sons and daughters they recently waved off to uni for the first time.

I’m not most mothers. And I’m wondering just that.

I don’t think I’m being dramatic. That’s the reality of living with incurable cancer. That’s the reality of knowing that, at the age of 56, your likely life expectancy is in single years rather than in decades.

I decided some months ago to take the bull by the horns and talk to the consultant oncologist about my prognosis. We’d covered it previously in passing but now I was ready for a detailed discussion. I’d taken some extra time off work over the summer and had done some really lovely things.

I currently work three days a week and I was seriously considering whether I should stop working or at least reduce the number of days I work even further and spend whatever time I have left doing the things I really love doing. I don’t have a bucket list; I think I’d just do more of what I already like doing.

Before I made a decision, I wanted to have some kind of idea about how long I might be around.

In April last year, I learnt that the primary breast cancer for which I was treated in 2015 and 2016 had metastasised, i.e. spread, to my bones.

Some people with ‘bone mets’ from breast cancer live for years and years with a good quality of life before their cancer spreads any further. These individuals are known as ‘outliers’ and they really are not the norm.

The current median survival for advanced, or secondary, breast cancer overall is two-three years, which means that as many people die within two-three years of their diagnosis as die after two-three years.

The data is not fully available yet, but there is hope that the new drugs that are coming through – and that I’m on – could change survival rates for the better, at least in the type of breast cancer I have.

My breast cancer had also spread to my bone marrow, and that complicates matters.

So you can see why I wanted a proper chat about my prognosis. There are at least 11 different sub-types of breast cancer and that median survival figure doesn’t differentiate between them.

The data is inadequate but I knew the consultant had seen enough and knew me well enough for us to be able to have an intelligent conversation about it all.

Read Maureen's personal blog

'I’d be disappointed if you didn’t get five years'

I’d gone over it all in my head, and I knew I wouldn’t be able to bring myself to come straight out and ask the clichéd “how long do you think I have left?” So once I’d said what I wanted to talk about – even that wasn’t easy – I asked instead what would surprise her.

“Nothing would surprise me,” she said, after perhaps just the slightest hesitation. That threw me, but she added almost immediately: “But I’d be disappointed if you didn’t get five years.”

We then discussed her reasoning for this. Most importantly, I’d been responding well to these new drugs that I was on and that was a good start.

That was in October. It’s very much no longer the case that everything is going in the right direction, but I’m still on the same core drugs I started on shortly after I was diagnosed last year. The longer you can stay on these early lines of treatment, the better.

So for good or for bad, for the moment, I have this figure of five years in my head. Weirdly, it came as something of a relief given the median survival figure of two-three years. I may reach it, I may not – but a prognosis of five years (even if it is just indicative) is better than a prognosis of two years… or of three years… or even of four years.

Five years is too soon to be making final plans but it’s not too soon to be thinking about making them.

Incurable, but still treatable

So how do I feel? Happy to be alive has to be the first answer. The second is terribly sad – at being diagnosed with a treatable but ultimately incurable illness with a poor prognosis at the age of 56. I have a husband who is also my best friend and we have two young-adult sons. Would anyone feel any differently?

For some time after my diagnosis, a wave of immense sadness threatened to engulf me every time I heard one of our boys call “mum”. They’re 21 and 19 and I’d wonder how much longer they’d have someone to say that to. My mum is 83 and has dementia but she is still very much alive and kicking and clearly loves me to bits.

It didn’t take too long for sadness no longer to be the overriding feeling. Now, rather than let the sound of the word “mum” pain me, I let it sweep over me like a comforting blanket or a favourite old coat. I cherish it even more now that the boys are at uni and I hear it less.

It’s much the same with my husband, every time I hear him say Mo or Maureen.

We’ve stopped making long-term plans. It’s difficult to look too far ahead when things can change quite radically from one month to the next. So we talk instead about what we might do in the next month or so. Then we plan it and we do it.

We’ve already been on quite a few short trips. We’re enjoying each other’s company and the time we’re together.

Living well

I’ve decided against stopping work. I’m a journalist and editor, and I like the job way too much and get too much out of it to give it up, and my managers and company couldn’t be more accommodating or understanding about the whole thing. 

The weird thing is, on a physical level you wouldn’t know I have cancer at all – let alone an incurable form of the disease. I sometimes find it hard to believe myself. I feel incredibly fit and well. I’m running and playing tennis again and I’ve even been skiing.

I managed to do lots of cycling last summer and I’m about to start taking that up again. All that was unthinkable when I first got my secondary diagnosis. I had back pain and severe anaemia – to the extent that I needed a blood transfusion. Even looking at my bike in those early days made me feel tired.

Every day I remain well is a bonus. Dropping the boys off at university was much more of a happy occasion than a sad one. It would have been very different if I hadn’t been well.

The terrible fear I felt in the first few months after I was diagnosed has gone, although it’s very hard to look beyond the next monthly appointment with the consultant.

I get very nervous in advance of these meetings, where we discuss the blood tests I’ve had the previous day or the results of the scans I’ve had since the previous appointment and I find out whether I can stay on my current treatment for another month. 

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More treatment options

At some stage, the cancer will find a way of outwitting the drugs I’m on. It will spread and force a change in treatment. That may happen sooner; it may happen later. When it does, we’ll move on to the next appropriate line of treatment… and so on and so on until we run out of options or I decide I’ve had enough.

In the meantime, of course, I might get run over by a bus. That’s not likely, though, which is why most people with a life-shortening condition tend to find it really annoying when people say that to them.

The scenario I’ve set out, though, is more than likely; indeed, it’s pretty much certain. The only question is when it will happen and over how long.

So will I see the boys graduate? Well in common with everyone else, I can’t predict the future. They may not even graduate. Any number of things – positive, negative or neutral – could happen that changes the presumed course of their lives. So what’s the point in focusing on that specific thing?

I guess what I’m saying is that very often we make presumptions about the future when the reality is that we have no way of knowing what will in fact happen. There are no guarantees of anything for anyone. Or almost anything.

The only thing any of us really knows with any certainty is that at some point we’ll die, but it’s the one thing, for obvious reasons, we don’t talk about. I’m not facing anything that the rest of us won’t ultimately face. I find that fact strangely calming.

Hoping for the best

Also, catastrophic accidents do happen and lots of people die before their time. Even the phrase ‘before their time’ implies an assumption that too often we’re wrong to make.

It’s entirely possible that I will outlive some of the people reading this who are younger than me and in the best of health.

I’m aware this might seem morose to some, but keeping that in mind also helps keep me grounded. The difference between them and me, of course, is that I have a heads-up on what my likely future holds.

No-one has any way of knowing, but I wonder for how much of those five years – or more if it’s more, or less if it’s less – I’ll be well or at least have a good quality of life. I guess my understanding of what constitutes a good quality of life could well change with each development.

The ICR’s new drug discovery programme will focus on tackling cancer’s ability to become resistant to treatment, so it could mean that, when certain drugs do stop working, there will be more treatments available to try.

There might be a future where people with secondary cancer don’t have to live appointment to appointment. I can but hope for the best and see how the coming months and hopefully years go.

In the meantime, I’ll try to stay calm and keep making the most of this good life I have and cherishing the wonderful people I have in it.

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breast cancer patient advocate
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