I’m Harriet, and I’ve been diagnosed with cancer three times. The first was in 2001, when I was 24. I was told I had a strongly hormone-positive primary breast cancer, just four months before I was due to marry my amazing husband, Robin.
Chemo can leave your body and mind beyond exhausted. By the time our wedding day came around, I had done four out of my six rounds, but I was still the last one standing at the end of the night.
Even though it was grueling, the physical treatment went well and to plan. The time I found the hardest was about six months after treatment finished, when my fears about the cancer returning began to dominate my thoughts, and there was nobody I could talk to who ‘got it’. Robin and I knew we’d have to put our plans to start a family on hold, and I was still completely exhausted from chemo. I had continued to work as much as possible during my treatment and really struggled when I was still finding things hard after treatment was over.
It felt horrible not to trust my own body, and my self-esteem really suffered. I am very good at smiling and making jokes when things are tough, but when everyone seemed to assume that everything was over and done with, that was when I was at my lowest. Amazingly, throughout diagnosis and treatment, I had never met or spoken to another woman in my situation.
It took years for us to start to live with our ‘new normal’. We travelled, became parents and built careers. Then, in May 2014, I went for a routine chest X-ray after a horrible, sick-making pain in my left shoulder and a sharp pain in my chest. I had a message from the GP that same day asking me to call him as soon as possible. A friend of mine in my support group describes perfectly how bad news is always accompanied with ‘a good dose of side head’. Well, you could virtually hear the damn side head in the message. When I went to the hospital, I was told that I had stage 4 incurable breast cancer that had spread to my lung (the same cancer I had in 2001), and also a separate thyroid cancer that had spread throughout my neck.
The treatment for these cancers has been immense: on top of chemotherapy and hormone therapy, I’ve had to have one of my lungs and my thyroid removed, as well as neck dissection and ovary removal.
When you have incurable cancer, people sometimes try to make you feel better by saying that no one knows how long they have left. But the uncertainty I, or anyone with a life-limiting illness, face is not the same as the general uncertainty of everyday living. I have incurable cancer and I still have the same risks as everyone else when I leave the house. Put simply, most people will live to see their children/nieces/nephews/godchildren get married. If I do, it will be miraculous.
In my daydreams, I walk into the clinic room to a standing ovation from my oncologist and nurses, accompanied by a band playing a rousing, congratulatory song, because they wish to announce to me that I am in a permanent state of remission. Unfortunately, I have to accept that this will probably only ever be a dream.
This can seem horribly unfair sometimes. But, adapted life on many days is bloody brilliant. If a serious illness does anything good at all, it focuses the mind. I take opportunities like never before. I am silly with my child and husband and friends and couldn’t care less what people think. I sing and dance in the car with my child and when we stop at traffic lights we carry on and don’t care if anyone is watching. I do a fine rendition of most songs from The Greatest Showman nowadays. Life for us is about love, laughter, kindness and joy. And, in among the daily grind of our ‘new normal’, I am pretty proud of how well we do.
There is, of course, help and support out there. I am a member of an online support group, which is a lifeline for me. I am surrounded by an amazing support network that I need to get better at calling on. But I am never short of messages and invitations to do interesting and exciting things, which I am so grateful for.
One of those had been raising awareness and funds for the Maggie’s that’s due to open this summer at the Bexley Wing site in Leeds and will finally mean I have a Maggie’s centre close to me. Seeing the project develop and knowing I have had a small part in making it happen is so satisfying; more importantly, knowing that me and my family will have Maggie’s to go to for help and support is a massive comfort.
The expertise in all Maggie’s centres is so valuable, and the timetable of events and activities is a lifeline to so many people with cancer. Since having cancer I’ve written a blog called Breathless Bird so I’m really looking forward to doing the creative writing course at Maggie’s.
The fact that Maggie’s can offer support to my family, including my daughter, is so important. I feel very reassured that there will be a lot of help available to them at present, as my illness progresses and beyond. Maggie’s will be a very important support to us all.
So what does the future hold for me? I know there will be good days and bad days; along with the happy times there will be more bad news. We never know what next year or even next month will be like. But what doesn’t change is the love, support, friendship and generosity we receive. When we are falling, we get caught by a net of awesomeness every single time, and no words I can say or write will ever be enough to thank those people. So, we will do it in any way that we can, moving forward.
First published in Making Maggie's magazine, May 2019