Part 2: People don’t know what to say when they talk to people with cancer

Please don't tell me your 'brother's, postman's, 2nd cousin's dog walker had cancer, and they were fine'

The first thing I learnt following my diagnosis, was that most people don’t know what to say or how to comfort you, when you tell them you have cancer. They mean well, but they’re uncomfortable perhaps, or maybe because they want you to be ok so badly, they don’t always think through the impact of what they say.

So they say things like:

‘Survival rates are so high these days!’

Or: ‘You’re young and fit – you’ll beat this!’ Forgetting that being young and fit hadn’t stopped me from getting cancer in the first place, so therefore it’s hard for me to trust that it will be the thing that gets me through cancer.

Or: 'But you don't look sick!'

Or my personal favourite: ‘My brother's, postman's, 2nd cousin's dog walker had bowel cancer and they made a full recovery, so you’ll be fine!’

All these things may well be true, but every cancer is completely different, and not just geographically – as well as occurring in different parts of the body, it’s also found at different stages, from 1 to 4.

In the case of bowel cancer, a stage 1 diagnosis means that the cancer hasn’t spread beyond the bowel wall and can probably be treated by surgery alone, whereas a stage 4 diagnosis means it has spread to other organs in the body – the cancer has ‘metastasised’. At this stage the cancer is incurable, and although not necessarily terminal, the odds are pretty low. My cancer is pTNM Stage 3 Duke's C, which means my tumour has spread into the outer layer of the bowel wall, and into 4 or more lymph nodes – in my case a lot more than 4. This is known as being ‘locally advanced’ and treatment involves both surgery and six months of intensive chemo.

The cancer cells can also be completely different – from grade 1 or ‘low-grade’, where they’re pretty normal looking and slow growing and prognosis is good, to grade 3, or ‘high’grade’, where they’re abnormal and aggressive and prognosis is much poorer. So 2 people who both have Stage 3 cancer could have completely different prognoses. My cancer is grade 3.

It’s also worth pointing out, that regardless of stage and grade, your life will never be the same again.

So to me, especially whilst I was waiting for my final grading and staging, being told that ‘everything would be ok’ when there was no way of knowing that, or having my experience compared to that of someone else’s, didn’t help me feel ok at all. In fact, it made me feel that the intense fear that I had was unwarranted; that I didn’t have a right to feel that my whole world was turning in on me, that I was just being self-indulgent, or fatalistic. Hearing these things, devalued the intensity of my experience somehow.

I learnt that what I really wanted people to say was this:

‘That’s really shit Suze. I don’t know what to say. But I am thinking about you and I am here for you. I will hold your hand/cuddle you/walk your dog/clean your bath whenever you need.

So please, if someone you know finds out the have cancer, it is better to say nothing, than to tell them everything will be fine. And definitely don’t tell them what to eat or drink…or what not to.