Secondary Breast Cancer

My Secondaries Diagnosis

By D

Although I had become used to falling on the wrong side of the statistics all through my treatment for primary breast cancer (a second primary in the "good" breast - comparatively rare, a new tumour in a reconstructed breast - almost unheard of), my secondaries diagnosis came as a complete shock. I didn't have any symptoms that told me it was in my spine. And again when it went to my lymph system there were no signs either.

My best friend and my husband were with me when I got the news. So at least I didn't have to worry about how to tell them. But telling everybody else was so hard. It's just impossible to know how to do it; it's not one of those things that you practise, is it?

I think there are lots of reasons why it's so hard to tell other people. In my case, I felt as if I had let everybody down - all those people who rooted for me during my treatment for primary breast cancer and celebrated when that first lot of treatment was over. I felt guilty that I had let them all down. Then it's difficult to deal with their reactions - either the misinformed platitudes ("you'll be OK. Just look at Kylie/you have such a positive spirit/there are so many miracle drugs coming along"), or the over the top sympathy (I don't take sympathy well), or the stunned silence. Who on earth can give you a response that is going to be helpful, constructive and not leave you feeling more shitty than you do right now? And having to deal with other people's emotions over this when you are still struggling to get your own under some sort of control is just not fair.

I had some very, very dark days after my secondary diagnosis. I didn't get out of bed. I just didn't see the point. It felt like I had nothing left to contribute to the world now. None of my plans were going to come to fruition (I had only recently retrained to become a teacher). I even switched off from my kids - I think as a way of pulling out of their lives so that they could begin to live without me - a bit like mothers in the wild reject their young when it is time for them to become independent.

Why am I telling you this? It's pretty depressing stuff, isn't it? But I wanted others who are newly diagnosed to know that they are not alone in feeling so down. And I wanted to maybe offer something that gives women in a similar situation some hope that it is possible to find a way to live with a secondaries diagnosis.

I won't claim that I am not depressed some of the time now. I am. It's natural. But my life has taken on a new dimension and I have become, more or less, comfortable with it. I know this is a shitty disease that will probably rob me of the opportunity to see my kids finish school, graduate, have kids etc. But most of the time those thoughts do not dominate my thinking. Most of the time, I just get on with things and do what I can for them, while I can.

Time was the thing that helped. It is impossible to get your head round this in a few days. I was also lucky to have a mother who dragged me out of my bed and took me out into the sunshine and made me remember that life happens moment by moment (I know it sounds a cliche, but it is true). She took me to Chessington World of Adventures (a strange place for a grieving forty something year old woman and an eighty year old with a walking stick with no kids in tow). But just being surrounded by noise, action, and lots of people made me feel part of the human race again. She made me go to the shops. She insisted I went to the park with the dogs. She was gentle enough not to push too hard, but didn't let me sink under the duvet too far.

Eventually, I was able to talk to people. I adopted a very factual manner. Even clinical. It helped to envisage that I wasn't me talking about it, but one of my medical team. I refused to be drawn emotionally, it was just a matter of imparting facts. I told people where the cancer was, how it was behaving, what the treatment plan was, what the likely side effects were. To those who asked, I told them how they might help me (pick the kids up from school, make me a meal once in a while, etc etc). Only with my very closest friends did I discuss my fears. But I did this freely. I talked about death till I was all talked out. I talked about my fears for the future of my kids. I took whatever reassurances they could give that they would be there for them.

I made my will. I wrote my dying wishes. I planned my funeral. I even sat down with the kids and asked them about their favourite pieces of jewellery so that I could make a list of who got what. I got my address list up to date, made sure all my paperwork was in order, wrote letters and all sorts of stuff so that I wouldn't leave a complete mess if I were to drop down dead.

All of this was cathartic - I felt I had broken through something as I put away the lists, plans, wills etc. It was done. What was left was to find the things that I wanted to spend whatever time I had left on. I decided I had always wanted to sing, so joined a gospel choir. I started to go to the theatre a lot more - taking the kids to see all sorts of things and creating memories for them of happy times.

And all of the time, I have tried to find positive things to focus on - not because I believe in the positive thinking can make you better mantra - but because it is possible to find nuggets of hope. There ARE people who have lived many years with metastatic disease (I met somebody who had lived fifteen years with lung mets at a conference last year). There ARE treatments being investigated now which might provide more time for us. There IS lots of support for people in our position, even though it is such a horrible place to be.

I am sorry, this sounds a lot about me. But I hope others may be able to take something from my experience that might help in the dark times. I have found that it is sometimes so hard to live with this terrible knowledge that I am seriously ill (even if feeling quite well) that it is impossibe to imagine anybody else can understand how I feel. Yet there are so many women here who have been in a similar place and can offer support - emotionally and practically. It doesn't take much to reach out to them. When you are ready for what they can offer you, they will be ready to help.