The emotional and practical support from Living with Secondary Breast Cancer meet-ups was invaluable

I needed to see other people living with a secondary diagnosis

Before I was diagnosed with secondary breast cancer, I didn’t really know anything about it. Nobody had explained to me at my primary diagnosis that breast cancer could spread and that, if it does, it becomes incurable.

When I got my diagnosis in 2016, one of the breast care nurses told me about the Living with Secondary Breast Cancer meet-ups with Breast Cancer Now.

She said that I didn’t have to go straight away as I might need some time to get my head around everything, but I wanted to surround myself with like-minded people as soon as possible. I needed hope, and to see people living with secondary breast cancer.

The Living with Secondary Breast Cancer programme covers so much

I went along to the Poole meeting because I was living in Dorset at the time, and I still go along to that group even though I’ve since moved to Somerset. It's an hour and a half’s drive, but it’s worth it to spend time with people who really get me.

The emotional support from them is so helpful, and you can often find practical support from someone who has experienced the same side effects as you or gone through the same treatment. It's so helpful to link up with someone who has the same type of cancer as you, almost like a buddy system, because sharing that sort of knowledge is invaluable.

I met people whose cancer had progressed more than mine and, at the start, I almost felt too well to be there at times. I felt a bit awkward. But I know that my own treatment could stop working and that my condition could change at any time – even though some days I feel I could go on forever.

The Zoom meetings and speaker sessions we had during Covid-19 were also helpful. Anyone who has had a secondary diagnosis should attend because they cover so many useful things. 

We've had information on everything from aromatherapy and yoga to writing a Will. Everyone was so down to earth, too. They really tell it like it is, and everyone in our group appreciates that.

I know that further down the line I might want more psychological support for end-of-life care, but right now I think I have quite a lot of help.

There are so many practical things to deal with when you have cancer

Before my diagnosis, I had quite a high-powered job. It was very demanding and I was travelling all over the place. When I had my primary diagnosis, the company were so caring. My boss was brilliant and they really looked after me.

When I got my secondary news, I asked the oncologist how long I'd got. She told me I probably had about five years, so I decided I would stop working. I was determined that we’d find a way to survive financially, as I didn’t want to spend the last years of my life at work.

I looked into pensions and all that sort of thing, and someone from Macmillan Cancer Support came around to help us out. We manage and we get by, but not as well as we did before.

It’s difficult to know what to do with pensions and savings when you don’t know how long you’re going to live for. I guess none of us know when we’re going to die, but having secondary breast cancer means you need to make certain calculations. You have to try and work out how long you’re going to live so that you can budget accordingly. It's an awful thing to have to do.

I've already had five years since my diagnosis, and I find myself thinking I might have another 10, or maybe even more. But then I worry that I'll live longer than I expect and won't have enough money to get by.

I hope there will be support for my family

Ultimately, having secondary breast cancer makes you think about things you really wish you didn’t have to think about.

I try not to let it impact on my family, but it’s hard sometimes.

My sons are 29 and 26, and they do ask how I am, but I don’t think they fully understand what I'm dealing with. I don’t think I want them to either. My mother is a lot more switched on – she always wants to know what’s going on – but I don’t want her to worry.

As for my husband, I’m not sure how he’ll cope when I go. I worry about him more than I worry about myself. I worry that he won’t reach out, that he won’t open up to anybody emotionally.

Right now, I am grateful for all the support I get through the Living with Secondary Breast Cancer programme. I just hope that, when the time comes, there will be support for my family too.