The loneliness of a cancer diagnosis

Republished with kind permission from Maggies (it originally appeared in their magazine in 2019)

The day I was diagnosed with cancer, I felt as if I had stepped out of my constantly-chaotic, sometimes-boring, but happily-normal life. It felt like, whilst my physical form remained in Normality, a big part of me had been sucked into a parallel universe. Somewhere away from everyone and everything I knew. I had left the security and safety of my life, my family and my friends and I had stepped into a dark, lonely, very frightening place: The World of Cancer.

From my new vantage point, high up in this parallel universe, I could still see Normality. I could look in on it from afar. And I could see that life in Normality carried on. The postman continued to deliver the post and the milkman continued to deliver the milk. Children continued to go to school and people continued to go to work. Trains and buses still ran. Airplanes continued to carry people across the world. The earth continued to spin, day continued to turn into night, night continued to turn into day, and life on earth continued as it always had. Except for one thing: a huge, scary, black vortex hole had opened up and part of me had been sucked through into this parallel universe. I was looking in on Normality from this parallel universe. I was out there on my own. Petrified. Scared. Alone.

Yes, of course, my husband, my family and my friends were aware of the cancer diagnosis and it was a huge, horrible, awful shock for them. They were upset. Very upset indeed. They were scared for me, they were sad for me and they were concerned for me. My husband and parents rallied round and could not have been more supportive. And, in fact, many friends stepped up brilliantly and did the most wonderful things for me and my family. They brought us meals, they took care of the children, and they stayed by my side supporting me for the duration of my treatment. Saying and doing all the right things to help me during this traumatic time.

But, no one in my life in Normality had ever had cancer. Some of them had known someone with cancer. A couple of them had sadly lost friends or family to cancer. But none of them had ever had cancer. They hadn’t experienced the shock of the diagnosis, the terror of the tests, the prodding, the poking, the scanning, the sleepless nights, the inability to eat, the heavy weight on their chest, the difficulty breathing, the constantly sweaty palms, the shaking, the anxiety, the worry or the fear. And, despite them trying to help me in every way that they could, nobody could relate to how I was feeling and what I was going through. You can have all the love in the world directed your way, but strangely, you can still feel the most lonely you have ever felt.

And then, one day, I decided to look online for support. And I found such an amazing support community. I found Facebook groups, Twitter communities and Instagram networks. People going through treatment for breast cancer and other types of cancer. Dazed, scared, people at the start of their cancer diagnosis; people mid-treatment struggling through physical and emotional side effects; and people at the end of their treatment trying to work out how to process what had just happened to them and how to move on. And I found charities and organisations supporting people going through cancer: inviting me to support groups and drop-ins, to phone their helplines and to visit their centres. Everyone was posting on these social media channels: posting advice, support, encouragement, tips, information and empathy. And I could relate to it all.

So, I dipped my toe in and I joined a Facebook group for women of my age going through breast cancer treatment. And then I started following some people on Twitter and Instagram, who followed me back. And then I joined in with some of the chat. Mostly (but not all) cancer-related chat like talking about the side effects of treatment, crazy emotions and the daily struggles of a breast cancer diagnosis and living life after treatment ends. Things that my friends and family were unable to help me with (despite all their very generous efforts). And soon, I was no longer alone in this parallel universe. I was with all these wonderful people. I realised that actually this parallel universe wasn’t as lonely as I had first thought. I was no longer alone. I had just needed to look around.

Now, one year after finishing chemo and radiotherapy, and a couple of months since finishing Herceptin, quite a big part of me is back in Normality. But, getting to the end of treatment and moving on with life presents its own challenges which can be difficult for friends and family to comprehend. So, I occasionally find myself back in my parallel universe. But I am no longer lonely there. Quite the contrary. I have an amazing network of Twitter pals and Instagram friends. People who ‘get’ what I am going through and for whom I ‘get’ what they are going through. It is an amazing support network.

So, if you have stepped out of Normality and you feel like you are looking in from somewhere else, somewhere where it is scary and lonely, look around. Look for the others who are there with you, whether on social media, online forums and group chats or even at cancer centre support groups or drop-ins. Look for people who are going through what you are going through. And the people who are there to help, advice and support you. And once you find them, I promise that you won’t feel alone any longer.

You can find support and meet other people in your situation by visiting a cancer centre such as Future Dreams House in London or a Maggies Centre which are located around the UK. Ask your medical team for details of somewhere local to you.

February 2019