A couple of weeks ago I saw a retweet from someone that read something along the lines of ‘people with metastatic cancer are lucky because they don’t have to spend the rest of their life worrying about their cancer coming back’.
The retweeter was saying how true this was, and talking about their fear at every ache and pain. But reading it not only pissed me off, immeasurably, but it also seemed to point out a huge difference between people with a primary and secondary cancer.
One I feel like I’m able to talk about, having been part of both the primary and secondary club.
So, I know that everyone with cancer, no matter what stage, is dealing with cancer, and that massively sucks. But I have to say, having had a primary, and knowing loads of people with primaries – the way you think and feel and behave once you’re living with an incurable cancer, is so far removed from the way you think and feel and behave with a primary cancer. And I think that this is massively overlooked by people with a primary cancer.
One of the inherent differences between a primary and a secondary is that with a primary cancer, your treatment comes to an end. There is a finish line that you cross. In some cases, there are bells rung to symbolize it. There are parties thrown. There are end of treatment holidays taken. There is talk of getting back to normal. Albeit a new normal. But there is talk of returning to your life. And even though the horrors of having cancer never leave you, and they change you, and stay with you. The side effects may take some time to leave you. And like the tweeter said, there may always be a small cloud, somewhere at the back of your thoughts that the cancer may return.
But, and here’s the big but – YOU ARE CANCER FREE. You get to live your life cancer-free. And, as I was just about finding out when I got re-diagnosed – you get to decide if having had cancer defines you. (And that part there is the really tough part. Figuring out how having had cancer fits into your life. It’s not something that you get told about, you just have to try and figure it out yourself!)
Now living with incurable cancer is a different game. One that I hope no one with a primary has to find out about. But a totally different game.
For starters, no matter how much you try to put the thought out of your brain, you know that there is a disease in your body that is trying to kill you. All the time. And as the name suggests, it’s incurable. So whilst it might go to sleep, it might be classed as No Evidence of Active Disease (NEAD) it’s still there, just waiting inside your body to rear its ugly head and drag you down with it again!
And even if you’re NEAD, you are still going to be treated, to make sure that the cancer stays that way – so there’s no end to the treatment for you. Just varying lines of treatment that stretch out into the future. Treatments you hope to work for as long as possible and help you beat the 3-5 year average timeframe people with a metastatic breast cancer diagnosis get given!
And you know those side effects that I mentioned gradually get better once you finish your primary treatment, they linger. Maybe because treatment never finishes so the side effects never finish, or maybe because your cancerous growths are causing you pains, or maybe sometimes it’s just because the all-consuming mental weight of knowing that this is your life and no matter how well you feel you’re just essentially living with cancer inside your body.
I’ve still got some friends from my primary cancer days, and I’ve made a few new ones, but because of the huge gulf of a difference that comes with a secondary diagnosis, I try not to surround myself too much with people who are having primary treatment. They are either too optimistic about their post-cancer future, which I love to see, but feel bitter about. Or they are super melodramatic about their post-cancer future, which I just get frustrated at! But I also totally understand this because I was pretty melodramatic about it too – it makes me cringe though, how melodramatic and, quite frankly, insensitive I was to anyone I knew at the time with an incurable cancer………I was, and I’ll admit it, a bit of a nob!
So sometimes it’s just easier to not get too close to people with a primary cancer. Especially incase you see them agreeing with the thought that those of us with a secondary are lucky because we don’t have to fear the return of our cancers.