Receiving a secondary and incurable diagnosis

Eight years of check-ups, operations, infusions, hormone therapies and scan after scan, and I hoped beyond all hope that, by doing ‘everything right’, my turn had passed. Not that I wished it on others, just that I wanted to move on with my own life and so could those closest to me. My confidence was beginning to grow again, that life could be normal and that I could let myself look beyond the immediate term. I remember feeling more light hearted for the first time in a long time and having the first career development conversation I’d had in years, feeling excited about the future.

And then it happened again and this time incurable. Devastating, is how it felt to receive that call. And terrified and numb is how I felt for a long time after. How do you even begin to reconcile that a healthy 45 year old with two small children can have a terminal illness? You can’t. I’ve tried, and it isn’t possible. And sadly this is the case for many people.

Everyone’s story is different. But my ‘secondary’ story started with an injury which landed me in A&E where a tumour was found. Scans and blood tests followed very quickly and confirmed that cancer had been having a field day in my bones for a while. At that point, the understanding that the rest of me was ‘healthy’ was a small comfort but meant I had the physical strength to take whatever drugs needed to be thrown at me. My mind on the other hand was not helping me to keep strong for what was ahead of me. Every little thing felt like a jolt – would I be here to see my daughter start high school, would I be here for the next Mother’s Day, would I be here to hear about my son’s school results or meet his first girlfriend? I went into overdrive – Will, Power of Attorney, custody arrangements, letters for my kids – and practical things like donating ‘things’ to the Cancer Research shop and throwing out loads of photos because who else would want to look at them when I was gone?

At work

Being stuck at home with restricted mobility made things even worse as I had no normal life and no strength to deal with the emotions of those around me who desperately wanted to make this better. With the help of my colleagues, I was set up to work remotely using video in addition to email and phone. All my meetings were turned into calls, even lengthy workshops which I facilitated from home. I worked for eight weeks from my dining table and delivered everything I needed to. That gave me a sense of normality which I so desperately needed, as well as flexibility to have radiotherapy and to get established on new treatments. Emotionally, I turned to Maggies, knowing that mental strength was what was within my control and would help me to keep life ‘normal’ for my two children. I learned some simple things to ground myself when it all feels overwhelming and once again, I had a safe place to cry and scream and then leave ready to tackle things afresh.

What I learned about supporting colleagues at this stage is:

That they won’t know everything at one time. I was told that there is potential for me to be healthy and operating as I was for a good number of years. But what did that really mean? Treatments don’t always work and have to be changed, the disease itself has a mind of its own and the rest of your body can be impacted in ways which can’t be anticipated. So, work with your colleague, adapting as things stabilise or change.
That your colleague is learning how – if it’s even possible – to get their head around the fact that their future is so uncertain. That means there will be up days and down – very down – days. Just acknowledging it can help.
That dealing with everyone else’s reaction is tough. Maggie’s helped me to think about what I needed from my colleagues at this new stage and to articulate this very clearly. While I’ve not hidden my diagnosis, I also don’t openly speak of it all the time and that’s what’s been right for me personally.
That some people need, or want, to bow out of work now and that’s ok. Help them leave in a supported way so they know they’ve made a difference. Just walk in their shoes for a moment and you’ll know what’s needed.