I made the decision this week to opt out of routine health screening. I decided not to have cervical smears quite a long time ago. I find them deeply distressing and they’re one of the few things that scare me badly. I don’t find the possible outcome of cancer being found frightening but there are certain experiences in our lives that can continue to cast as shadow over us long after they are over. I’ve decided not to go ahead with a colonoscopy that was to be done next week and I’m going to talk to the breast clinic and remove my name from the routine breast screening list.
This decision will be understandable by very few and imcomprehensible to most people.
I come from a huge family where there is no history of heart disease and little history of cancer other than three men who smoked cigaretter for most of their lives. On both sides of my family, as a general rule, we live long lives and die of old age. There is little serious illness of any kind in my family.
As I was psyching myself up for a colonoscopy next week I found myself questioning the need for it and trying to work out why I was actually having it. I had a bout of prolonged diarrhoea. It went on for nine miserable weeks and my life was greatly curtailed by the experience. It’s only in recent weeks that I’ve been able to get back to what passes for normailty in my world. What was obvious from quite early on was that although it was distressing, disabling and depressing it didn’t appear to be linked to a serious illness. There was none of the obvious signs that would point my doctor towards the diagnosis of anything other than an irritable bowel. I lost some weight but I was overweight and it was a blessing. After we had exhausted all the tests that were available the last one to be scheduled was a colonoscopy. I had to argue my case to have this even considered because I didn’t want a sedative. It is interesting to note that the nurse who I spoke to originally suggested that the doctor who would do the procedure should talk to my GP and then when they’d made up their mind about whether I was allowed to have it done without a sedative then I’d be told. It really seemed to surprise her when I suggested that I should be involved in the decision making process. I don’t like the attitude in some health professionals that assumes that, because I have no medical training, I’m ill-equipped to make decisions about my health and my body. It’s quite insulting and adds to the general unease that I have a times like this.
Eventually I spoke to the doctor who would perform the procedure who told me that he expected to find nothing and, since whatever it was had seemed to have disappeared as quickly as it arrived, that there had been nothing wildly wrong. I think that’s when I began to deeply doubt the need for the colonoscopy. I had been booked in to have a procedure that would take three days of cleaning out of my system before succumbing to an undignified adventure with a length of tubing and a camera before it could be declared there was nothing wrong with me – as they had suspected all along.
I have bipolar disorder and a few years ago I went through a very rocky patch where I found it extremely difficult to manage my affairs and decided, after consultation with two good friends, to register Power of Attorney. This means that two people I’ve chosen can step in and take over when I find it impossible to manage. Bills will get paid, decisions will get made and I’d be given time and space to recover in the knowledge that I was being looked after in all aspects of my life. It was a stressful process but invaluable when it comes to making huge decisions. Both my attorneys are scientists, one is a Christian and the other is atheist so they cover a lot of bases. They both know me very well and it’s fair to say that they’re the only people who can actually second guess me.
I talked to both people this week and both agreed that my decision was logical, lucid and the right way for me to go. I talked over my concerns about being kept out of the loop while other people made decisions and the uneasiness I increasingly felt about that. I’m not a child and I have a right to make adult decisions about myself. I spoke to my GP and he agrees with the three of us that I have a right to withdraw from routine screening and that I’m doing it for all the right reasons.
It followed quite naturally that, after having withdrawn from the cervical cancer screening, to withdraw from breast cancer screening. I’m very lucky to come from a long line of people who just don’t succumb to cancer but I am also very aware that I’ve never had a mammogram performed by a woman who has had one themselves. This lack of knowledge of what the experience feels leaves me with feeling of being handled less than gently both physically and mentally. There have been too many instances of women reporting skin tears because of the way a mammogram has been performed yet we are put under increasing pressure to feel grateful for this treatment. Would men put up with screening for prostrate cancer if rough handling caused their testicles to tear? I think not.
So, for the time being at least, routine health screening can be a part of someone else’s routine just as long as it’s not mine.