When the doctor first told me I had breast cancer the biopsy results weren’t back and I hadn’t had any scans. He knew it was more than likely to be a breast cancer because of the relationship between the lump and the swelling in my lymph nodes. We talked about the scans and the tests I would now have and what we would know once we had the results back. Then he asked if I had any questions and I remember saying no. Not because I didn’t have questions but because I knew that, as yet, he had no answers.
He was concerned that I wasn’t taking it all in. He thought I didn’t understand. Perhaps because I was calm and collected and didn’t cry. I remember thinking that the nurse in the corner was probably going to take me into another room soon. A room with a couch in it, and tissues. That would be the room for crying in. Before the nurse and I went to the crying room I asked the doctor if he was ok. He looked worried.
Doctor : I don’t want you to just go home and Google it.
Me: Of course I am going to go home and Google it.
The first thing we all do is Google it. I appreciate that the medics don’t like us doing this. The internet is generally filled with utter nonsense written by conspiracy theorists and scaremongers. Present company excepted, obviously. Googling can be a very dangerous activity. The internet can convince you of most things from the ultimate worst case scenario to you being able to simply tell your body that the cancer is not required and it will just get rid of it for you. Googling Breast cancer throws up such a wide range of utter nonsense that I can completely understand the medical profession’s tendency to warn against it as a method of research. If you are judicious though, if you keep to respected websites such as the NHS and Macmillan there is some great information out there.
In the early days of my diagnosis I turned to the internet. Initially I was literally just sitting around endlessly Googling cancer and that does not help. It doesn’t help at all. Your cancer is as unique as you are. The variables are vast and the internet is a blunt tool. What the internet does have to offer however, is support. I found an organisation called Breast Cancer Care. It’s a charity that focuses on supporting people with breast cancer specifically. It’s website is full of really helpful information, support and real life stories. It also has a forum. The forum is a place where, women mainly, can talk about their fears, diagnosis and treatment. There are boards that specialise in the various treatments available so we can all gather accordingly.
I am not usually one for support groups. I can be fiercely independent and self sufficient and I can be a bit overwhelming in group situations. The Breast Cancer Care Forum has been brilliant, though. There are monthly threads for women having chemotherapy that starts in a particular month. They have cutesy names and I must admit I was relieved to end up in the relatively non cutesy sounding New Year Newbies. Cutesy names aside it’s been a life line.
Our monthly thread also has a private Facebook group where we all chat, share stories, pictures, news and fears. Having cancer treatment, particularly chemotherapy, can be so isolating. It’s full of fear and unknowns and it’s hard to find people who can understand what you’re going through. There are about 25 of us so far and we’re a really diverse group. Different ages, family set ups, professions. Different breast cancers, different stages. Some of us are NHS patients, some of us private patients. We are from all over the country. We have different drug regimens but we are all having or expecting to have chemotherapy of some kind.
The first place I go every morning is the Facebook group. I can check up on my new found chemo buddies, find out how everyone’s doing and make sure everyone’s feeling ok. We compare side effects, wish each other luck, and share ideas and tips for making the whole process that little bit easier. Most importantly we’re there for each other and we can talk easily about our experiences. When we tell each other what’s going on we don’t have to explain what HER2 positive or hormone receptive means. We all know how intrinsically terrifying the whole thing is. We have a shared vocabulary and a shared understanding.
The best thing about the internet is that it doesn’t matter how shy you are, how rural your home is, how you look or how sick you feel from side effects; you can log on and talk to other people who understand, without question, straight away. We have come to really love our little group and to rely on it. It’s wonderful to have a place where throwing up all day, losing your hair, googling cancer for 12 hours straight, is perfectly normal.