This morning, I showed Dr W's communique to my treatment nurse and she said I should proceed with caution. Two of her other patients had received a similar notice to quit and had had reacted by 'throwing their toys out of the pram': they are both continuing with their Herceptin. This was reassuring in the sense that it showed me I do have a choice based on precedent. I had thought I was taking control of the situation by writing to Dr W but now I can't see the wood from the trees.
If anyone reading this has been put in a similar quandary after using Herceptin for seven years, please share your experience by posting to this blog. The Macmillan site has zero information on the forums, so I've requested that they start a new discussion group for Long-term Herceptin Users An American site I found had some exchanges about it, and the stories of recurrence presented a range from two months to four years. I'd done four years on Herceptin when the disease recurred in my brain. I know the brain mets could not be treated by Herceptin, but I am now thinking of the cancer travelling to other parts if I stop the drug because Dr W told me once that it was 'keeping it at bay in the body'. I know it can go to liver, lungs and bone - I've seen plenty of women in the chemo room to whom it had done just that.
The main thing that struck me about this latest development in my treatment plan is the question of security (maintenance on Herceptin) versus uncertainty (surviving without it). I think I can cope with uncertainty, but I am hopeless when it comes to making a decision. Since this decision concerns my survival, I want it to be an informed one so I'll have to use these next two months to gather my own 'evidence' before I discuss it with Dr W in person. It is easy to slide under the influence of a consultant, especially one who has saved my life twice.
Why do I feel so unnerved by all this, when he mentioned the word 'cure' ?
|Trees at Sete by Cara Loukes|