Apart from this blog, only you, and I, and a few other people in my life know about my cancer.
(Which is like saying the whole world and me, and quite contradictory, but the fact is, I’m still anonymous and I like to keep it this way.)
I know that not everyone will have this very private approach to cancer. I’ve chosen to confide in as few people as possible for the following reasons:
1. I was overwhelmed by the diagnosis and every time anyone offered me comfort or a cheery word, I would burst into tears, or be forced to hold back my tears because it upset them as much as it did me.
2. I got the fear of cancer from people I confided in. In fact, I spent more time reassuring people than I got in terms of support – what an irony!
3. Tired of people saying “I’ve got an aunty who’s got an aunty who had cancer 10 years ago – do you want to meet her?” I was innundated with information from well-wishers. Everyone knew someone who had had a mastectomy, radiation-therapy and chemotherapy. I know they meant well, but I needed time to deal with the cancer my way, and not be influenced by other people’s experiences. I didn’t want my focus to be taken away.
4. The thought of conventional treatment terrified me. I preferred to read about it and come to terms with it my way.
5. I didn’t want to be clumped with every other person who had or had had cancer. I wanted to be me. Understand how I felt: one moment I was healthy, and the next moment I had a sign on my head that said “cancer sufferer”. I had enough problems dealing with my new personal change in status without having to deal with a public perception of what I was supposed to be.
6. I wanted to get on with my life as normally as I could. As I was still fit and healthy and had energy, I wanted to go to work because work gave me structure and purpose.
7. I didn’t want to be treated differently. I work for a large company and I couldn’t bear the thought of becoming a source of gossip, or being looked on with pity. Even worse, I didn’t want allowances to be made for me. I didn’t want to have to slap a happy smile on my face all the time, knowing that the moment I stopped smiling, someone would be thinking “poor thing – it must be the cancer”. Until I’m on my deathbed I’ll lead as normal a life as possible. The cancer wasn’t going to define who I am or what I am. But I didn’t want to waste energy fighting people or trying to convince them otherwise.
8. Tired of people saying “you have cancer, you’re looking well.” Most of the people with cancer I’ve met look relatively well. It’s only people who have been through chemotherapy or whose tumours are affecting a major organ, or are in the late stages of terminal cancer who may look unwell (loss of hair, yellowing skin, emaciated body).
9. Tired of people saying what I was doing was pseudo-scientific. I got this from a good friend and it hurt me a great deal. Maybe it’s pseudo-science to some people, but I’d still like some support and not an earful. Seeing that the chemotherapy that was offered to me only offered a 2% increased chance of survival, and in a survey on chemotherapy, oncologists were quoted as saying they wouldn’t recommend it to their own family, why is the scientific method so much better? Would they say the same if they were the ones with cancer?
10. I’m a private person/control freak/too sensiitve. Oh yeah baby – all three!
Jonathan Chamberlain, in his book “Cancer: The Complete Recovery Guide 2008” talks about this problem of who to tell or who not to. Generally speaking, he believes that bottling it up is not the best way. “The best strategy of all is to tell everyone everything. It really does get a lot of nonsense out of the way”.
Jessica Richards, in her book “The Topic of Cancer“, on the other hand says “once it’s [the cancer diagnosis] out you can never close the door whereas you can tell more people as you go along”. For her it was more a case of not “whom should I tell?” but “who needs to know?”
I think at the end of the day it depends also on what type of personality you have – I know someone who was at university and decided to tell everyone and got a lot of support from coursemates, as well as special allowances from tutors.
If you take the Don’t Tell route, then what would be helpful is to join a support group. It doesn’t have to be a formal group. It could be someone you meet while having treatment. The common bond of having cancer makes it easier to open up.
My belief is that everyone is different and you’ve got to deal with disclosure your own way. Don’t be pressurised into telling everyone. This is your journey, not your family’s, not your friends’. Be careful how you drive and whom you choose to drive with.