My breast cancer diagnosis was completely disorientating. It challenged my sense of self shockingly and suddenly. Losing my hair due to chemotherapy was an outward sign of all the other losses. And there were many losses, not just for me but for my close family and friends too including, psychologically, the loss of a sense of control, safety and security. Cancer cancels and curtails.
When you’re having treatment for primary breast cancer there is usually a treatment plan in place. My plan had to be changed. Initially I was going to have surgery and radiotherapy, then I found out I needed more surgery, chemotherapy and targeted therapy as well as radiotherapy. During chemotherapy I became ill with frequent fevers, neutropenic sepsis etc so some of my planned treatment had to be delayed, reduced and cancelled. Nevertheless, the treatment plan gave me some idea of where I was and where I was going. Following the end of treatment there was a sense of ‘which way now?’.
Most areas have ‘moving forward’ courses for cancer patients. The one I went on is called the HOPE (Help to Overcome Problems Effectively) course. Developed by Coventry University with Macmillan Cancer HOPE courses provide support for anyone who has had a cancer diagnosis. When I attended I was coming towards the end of my active treatment. I had been having three weekly treatments for well over a year at that stage and it helped prepare me for the next stage of life. There were six participants on my course which was facilitated by a survivor/volunteer and a health care professional. We had differences based on age, background, cancer and gender but we connected as cancer patients so often do based on our empathy, shared experiences and understanding. We chatted, we cried, we laughed. We learned about diet, exercise and relaxation techniques. We discussed and practised identifying goals, making plans and fulfilling them. One of mine was going to one of our local beauty spots for a walk by myself. It gave me a huge sense of achievement. The HOPE course was great. Based on my experiences I recommend the HOPE course or similar. Some breast cancer patients may live in an area where there are ‘moving forward’ courses specifically for breast cancer patients.
Many people I know say that ‘moving forward’ is in some ways harder than the treatments. In some ways it is; the treatment is over but the emotional and physical late effects are not. I have check-ups and I can contact my team with any concerns. This helps me move forwards. As a primary breast cancer post-treatment navigator, I am finding it takes time to adjust, to find my bearings.
I have known many people who had been diagnosed with breast and other cancers throughout my life. Sadly more of them have died than survived cancer but I do know people who are still around 20, 30 and 40 plus years later. My uncle was diagnosed with cancer about 45 years ago. I was a young child then but I can still remember the fear that descended on the family. The hushed voices that spoke about the ‘big C￼’. As we didn’t live close by we didn’t see my uncle very often but I remember how ill my uncle, a young man in his mid-twenties at the time, looked when we did see him. I can remember my dad telling me that had his brother been diagnosed a few years earlier it was unlikely he would have survived. He was one of the first people to receive his treatment. Modern science and treatments saved my uncle’s life. They have given him time. However, the treatments were harsh on his body. It was not until I had my own experiences of cancer that I started to understand what he went through and has lived with.
When you’ve experienced a traumatic event that has challenged your identity and threatened your life you take what you have experienced and learned forward with you. You can’t unfeel those feelings, unhear those words, ‘it’s cancer’, ‘it’s really, really bad news’, ‘it’s worse than we thought’, ‘you need chemotherapy’ you can’t unhear, unsee or unsmell the sounds, sights and smells of hospital.
‘Moving forward’ is a somewhat nebulous term and in my experience it isn’t nearly as easy, linear or straightforward as I thought it would be when I participated in the HOPE course. It is a two steps forward one step back experience.That’s not to say you dwell on everything you’ve experienced but it is part of your life so there are reminders. In fact sometimes the reminders help me realise I have moved forward.
So, ‘moving forward’ isn’t a one off event but a life long process. It isn’t about diminishing the impact of cancer, the treatments, the late effects. It isn’t about trying to forget what has happened. It isn’t about being positive or being negative. It is about acknowledging all that has happened and is happening, the late effects, emotional and physical, and finding direction, a way to keep going.
In my next blog I plan to share about a little more about what helps and what hinders me as I move forward.