A – Z of Breast Cancer: Ps & Qs

Yes, you should mind your manners at all times but that isn’t what I’m talking about. I mean Paranoia & Questions.

Stupidly, I thought my oncologist was going to tell me all about cancer. I kind of thought that was part of his job and after all, I had been led to believe this. The nurses suggested I write down all my questions in advance; some of the information booklets even have special printed sections at the back laid out with blank lines for your Q&As. I dutifully did this. I jotted down nearly twenty questions the night before my appointment, and these were only the ones I knew to ask. I had loads more; I just didn’t know what they were yet. When you don’t know your axilla from your anus it’s hard to formulate a meaningful question. Still, the doctor would explain and then I’d know.

I approached my oncology appointment like King Arthur’s knights approaching the Holy Grail. All would be revealed, right? Wrong. I took out my piece of paper and a pen to write down the answers and started my quest; What causes cancer? Are there any alternatives to Tamoxifen? Will my tissue expander affect my radiotherapy treatment? Do hospital budgets affect the treatment I get? Could pre-cancerous cells on my chest wall mutate and migrate to my lungs and set up a colony there? And what is cancer anyway? I saw two doctors that day and both brushed aside my questions in such a way that I felt a nuisance and stupid for asking them in the first place. Maybe some of my question were stupid, but how was I to know?

P.I.N. Pain In Neck
I was embarrassed by my page of questions. When I took out my pen and paper I felt like a hypochondriac with a fetish for dictation and I could just hear the doctor groan,Oh God, here we go. We’ve got a right one here. I imagined him scribbling little acronyms at the top of my notes for further reference: O.C.N.T. (obsessive compulsive note taker), P.I.N. (pain in neck).

I shouldn’t have felt like that but I did. No one seemed to be listening to me. No matter how loud I spoke or however long my list of questions, I couldn’t make myself heard. What was I doing wrong? Were my communication skills really that bad? Was I too loud, too quiet, too direct, not direct enough? Was I alienating myself by my curiosity? Did they think I was undermining them? Did they just not like me? Christ, now I had a new symptom to add to all the others:

Paranoia

I think paranoia usually establishes itself if you are living in a vacuum. If that’s you, get out. And remember you are only being paranoid if the thing isn’t really happening. Go talk to someone in the same boat, (support groups are good for this) then if you find you are the only one who feels ignored, marginalised and patronised then chances are you are just being paranoid. If however, the support group sounds like a Greek chorus warning, ‘Doctors never listen. Doctors tell you nothing’, you’ll have the dubious comfort of knowing it’s not you, it’s them.

There is nothing good to be said for paranoia. Shake it off. It will make you suspicious and fearful at a time when what you really need is to trust. Otherwise you are in danger of ‘shutting down’ and becoming isolated and embittered. After several months of not being heard I started to feel like this until I overheard two other women saying the same thing. I have now heard so many my-doctor-never-listens-to-me stories to know that the defect is not all mine. This won’t make the doctor listen to you but it might make you stop blaming yourself, and make you start looking for a way round the problem.

Preparation, preparation, preparation

My way round all of this is to prepare for each meeting as though it were a world summit. I have my aims and objectives, my desired outcomes all thought out. It’s an exhausting business, but when you’ve seen two doctors in the same week who had no idea why you’d been referred, you’ll know it’s worth it. In one case the referral letter was sitting on top of my file, the doctor just hadn’t read it. I try and put myself in their shoes, these people are under pressure, waiting lists are long, would I do something like this at work? On a really bad day, I might. If I am under pressure and have more than one thing to remember I have to write it down, somewhere obvious, otherwise I forget where I wrote it and the thing doesn’t get done. But I’m not a doctor; no one’s health is at risk from my attention deficit.

Maybe you are good at getting to the nub of things at a brief hospital appointment but I’m not. Either my mind empties or it fills up with junk, and I suffer from a kind of delayed reaction whereby I hear what they are saying five minutes after they’ve said it and it’s too late. Like that time when I went to the hospital with breast pain (in the remaining boob) and a doctor told me he wouldn’t give me a mammogram because nothing would happen in the year between my scheduled scans. I was dressed and outside the consulting room before I thought, Well heck, that's just not true… Unless we are to believe that just having a mammogram has a twelve month prophylactic effect then the lump has to start growing at some point in the calendar year. My cousin’s lump developed between yearly mammograms and by then it was large and had to be shrunk with chemo before operating. I had an ‘all clear’ scan ten months prior to the mammogram that detected my malignant lump. I blame myself. I took my eye off the ball. Now when I go to an appointment I prepare in advance. I try to keep focussed and that way I know that I haven’t wasted their time or mine.

Perseverance pays off

You will also have to be persistent with your questions. Really persistent. I spoke to one woman whose cancer was overlooked despite her repeated requests for investigation, and to another who was gathering information on her cancer in a notebook to ask her doctor about and she was told rudely to put the book away. What is going on? It is your body and your life and you are the one who needs to know. You have every right to ask questions. I know these doctors have heavy workloads and busy schedules but they must listen. The dermatologist I went to see told me never to stop asking questions. This may mean you becoming unpopular with the doctors. Well, here’s the thing: Cancer is not a popularity contest. Cancer is a matter of life and death. K.O.A. Keep on asking.

Read more at http://breastcancercares.blogspot.com/