Monday, 5 March 2012

Pandora's Pet Scan

I know. It's been a while since I dropped by. I've had good intentions, really I have. I have at least three unfinished posts to prove this, but every time I think of blogging I can't help but think of the loss of three internet 'friends' which has occurred over the last few months. I didn't know them in real life, nor really within the context of the blogsophere. I once wrote a comment on one of their blogs but I was, more often than not, a silent reader. But the loss feels substantial and has affected me in ways that I never really imagined it would. How can I really feel so much compassion for people that I've never met ? Perhaps I am just being selfish. The knowledge that metastatic breast cancer kills exists in all of us who have this disease. But in everyday life when I'm exchanging celeb gossip at work, or playing at home with my child, I choose to switch off the white noise that is the cancer default switch - the one that usually buzzes around in my head like a swarm of angry bees. I can't say that I forget for a while. Because forget is perhaps too desirable a word. No, I switch off. And I celebrate the fact that despite the treatments, despite the lack of pre-cancer energy, I am alive. And well. Well, for now anyway.

And really, there is much to celebrate. My birthday for one. All forty-three years of me enjoyed cake and red wine last month with the gay, giggly abandon of a teenager. I made no effort to rally friends and family around. I just wanted to enjoy the day as it unfolded, without expectation, without ego. And it worked. Being aware of myself for a change rather than what others might be thinking of me was such a relief that I wondered why I hadn't practised this kind of thinking before. Mindfulness is what meditation yogis call it. And apparently it provides all kind of health benefits. Although living in the now and having cancer are strange bedfellows. Staying somehow suspended in the present is the way that most of us cancer patients 'cope' on a day-to-day level. We know that if we thought long and hard as to what the future might hold, well, we might decide to give that forthcoming episode in our lives a miss.

But wait, what of the other good news ? The good news. I mean the really good news is that I'm currently NED!!!!  No, not the abbreviation of some hot new rap group, but that physiological state that us cancer patients all aspire to. No. Evidence. of. Disease. The first time in over a year since diagnosis that I've managed to reach this current state of nirvana.  The truth is, I don't even like to proclaim it too loudly lest I jinx myself for next time, but the real truth of the matter is, NED comes with a price. What price, you might ask ? The huge amount of scan anxiety that I seem to face before and during the whole tortuous process. In the last month I've not only had a PET/CT scan but also a CT brain scan after I complained one too many times about headaches. For someone who is often not short of ways to express herself, this time I have truly failed to find the words that explain the sheer anxiety and terror that accompanies the knowledge that in the space of a thirty minute consultation, my whole future could implode. And rather like the experience of being told that you have cancer, it doesn't matter how many times that you go through it, somehow it never gets any easier.

But let's not get maudlin. Let's say goodbye to three formidable women, who blogged their way through the same anxieties, the same hardcore drugs that I'm currently on, who made me feel less alone on many a lonely, fearful night and who inspired me to tell my own story. I know that at the moment I'm incredibly lucky. I also know that this reprieve could come to an end all too quickly. Just before I was given my good news, I have a confession to make. I looked at the disk of my scan before my doctor had a chance to. A crazy, crazy, utterly insane thing to do. I know.

In the world of private healthcare you are always given a disk of your scan before your own doctor has had a chance to review it. Quite why they would want to thrust a Pandora's box into the hands of an anxiety-ridden patient, I just don't know. But I guess in the world of corporate healthcare some would call it value for money. Well, of course like Pandora, I opened the box and saw what I thought was extensive spread to my pancreas and kidneys. I cried and worried and gasped and cried and prayed and worried and cried and gasped for the rest of the day. And then I had the rest of the weekend to imagine all kinds of terrible things happening within my insides before I had the chance to see my doctor. As I have already revealed, thankfully my own personal diagnosis was way off the mark. That day, I proved to myself as well as to my two bemused consultant oncologists, that just because I choose to spend my time reading breast cancer abstracts on the internet, I am indeed no doctor, scientist or pathologist.

I'm just a very terrified 40 something woman who on the outside looks as though she is coping well. I try to sound confident and positive when really sometimes I'm so frightened deep within. I wonder now when I look back at the beginning of the blogs of Toddler Planet, Just Enjoy Him and The Cancer Culture Chronicles, if this was the way all these remarkable women chose to deal with their cancer too. My thoughts are often with Susan, Judy and Rachel as it is more often than not with the partners and children that they sadly leave behind. I feel angry but hopeful at the thought of metastatic breast cancer being a chronic illness. Angry that it's so damn obvious that we just aren't there yet but desperately hoping that one more woman will not have to lose her life in this tragic, tragic way.

I guess that's all I have to say.


  1. Thanks for this update. Things around here are still NED despite being stage IV. 2/3 of our doctors are highly optimistic. The medical onc isn't, hasn't been and seems ready for the worst. Luckily she seems to be the most Jr member of Laura's team of care. Again, happy to hear that you're NED.

  2. Thanks Jim, I'm really happy to be NED too, despite the doom and gloom tone of my post ! I think when it comes to cancer, doctors just don't know for sure about outcomes. So much of it is down to individual biology. But 2/3rds is a pretty good percentage of optimistic doctors ! I wish you and Laura all the best and great to hear that she's NED too ! Cx