This time last year, I had just completed a long distance footpath across Scotland and was beginning to contemplate the next trail, which would probably have been sponsored for charity as I tend to do that alternate years. Little did I know then, and no way would or could I have imagined, the journey the year would take me on, or what I would find along the way. As it is, I am now preparing myself for a mere 13 mile charity walk to raise money money for research into breast cancer (cue: look right there's the link to sponsor me if you haven't done so yet!).
Around the time I began this unplanned adventure, I read a blog from someone marking what she termed her 'canciversary' the anniversary of her diagnosis. She questioned whether she should be marking this, and she asked questions about where the 'timer' starts for survival stats - is it diagnosis, is it completion of treatment, is it surgery, is it something else? Clearly it lodged in my mind, because as my own 'canciversary' drew near I have found myself reflecting on the year I've had. To be honest, I'm less concerned with where the 'timer' starts (I reckon it's probably diagnosis as that's the only consistent place given the diversity of detection and treatment) or even the prognostic stats (see the 'about me' stuff if you want to know them) than the quality of life I have had, and continue to have. The truth is, I can honestly say that in many ways this has been a good year for me. In this post, written over a few days, refined, reviewed and advance posted for my anniversary of diagnosis (date accurate, and time as close as I can recall), I offer some retrospective thoughts on an aspect of my life that has rather overtaken everything else and has changed me permanently, physically, emotionally, mentally and probably spiritually (I feel least qualified to comment on the last of these). Because there are lots and lots of words, I have also decided to add some photos taken at various points along the way, a visual reminder of an unchosen, but unregretted, adventure. Although I blogged my way along (probably ad nauseam for you poor readers) I also kept a private journal and it is by re-reading my unpublished thoughts that I have reflected on themes rather than specifics for this extended post (all those years of compulsory journalling finally paid off!)
The Quest for a Better Language
Right at the start of this journey (a cliche but one I choose to use) I saw a little video clip on one of the cancer charity websites which included a young man who said he didn't like the word 'survivor' because what did that make the people for whom treatment had not achieved remission or cure? Language of 'winners' and 'losers', of 'battles' and 'fights', of 'victims' and 'survivors' is unhelpful. People living with, through and beyond cancer will each find their own language for dealing with their experiences, with the treatment, and so on. Along the way I have encountered a variety of linguistic choices, borne of personality and experience, but very few people use the words I listed above. I chose the image of along distance footpath, with the treatment plan as a map, the support leaflets as guidebooks and so on. Chemo as a mountain, surgery as a forest, radiotherapy as a river to be crossed by stepping stones... these were metaphors that avoided unhelpful, negative language of winning and losing.
I think that finding better language, which avoids inadvertently putting pressure and expectations on people with cancer, has to be a good thing.
Along the path of the last year, there have been choices to be made, choices that have an impact on the current quality and projected quantity of my life. It has been interesting to find other people telling me what they would do, what I ought to do... and compared with many I have been fortunate in what people have felt free to say. Choosing life has different meanings for different people, according to their circumstances and beliefs. For me, at this point in my life, choosing life has meant undergoing rigorous medical treatment, with some short term impact on its quality. For other people, in other circumstances, the choices are different. Choosing life is a personal matter - more of lower quality or less of higher quality? Sometimes it is as stark as that. I have come across people being accused of 'giving up' because they have chosen quality over (a tiny increase in) quantity; it is only if it is our decision, us who have to live with the decision that we are free to comment - and then only on our own decision. I have followed the stories of a small number of people with secondary cancer, who have each made different treatment choices - and every one of them has quite clearly chosen life, in all its fullness, for however long it does, or does not, last.
Acceptance and (in)Justice
Right back at the start of this story I posted something to the effect that I had no sense of 'why me' more a sense of 'why not me', that I didn't feel it was unfair or unjust that this had happened to me. Doing so was tricky, and not a decision taken lightly, because plenty of other people thought it was unfair - 'why you?' 'why now?' Someone said to me they thought it was unjust that it happened to me - but no more and no less unjust than it happening to anyone else; in their view to say 'why me' would be to suggest it should be someone else. I don't know exactly how to square it all - I do think it is unjust that, for example, Annie at 27 has advancing mets when, I at 48, am, as far as anyone can tell NED. It's not that I wish I had mets, of course not, just that I've already had almost twice as much life as her. (sorry A you are probably cringing with embarrassment now) It's not fair that children in Africa die of hunger; it's not fair that people experience discrimination on account of their race, religion or sexuality - lots of things are not fair. Some things we can, and should, change, hunger, poverty, discrimination all fall into that category; others (as yet) we cannot, cancer being one of them. The old serenity prayer, with its desire for wisdom is true:
Beautiful or What? Never Say Never
I have never thought of myself as a vain person, never bothered that much with how I looked (no comments please!) but having a disease that impacts your outward physical appearance permanently, and treatment which does so at least temporarily, inevitably has an impact on your confidence. In common with many women, my biggest anxiety was losing my hair... the drugs, the potential for nausea, the surgery, even the risk of death felt less awful than being bald. No way was anyone going see my shiny, pink scalp! As this blog has reflected at various times, I discovered that I looked fine with little or no hair (though I'm glad its back) and that I really should never say never.
A year on from the start of treatment, I have lovely thick, short wavy hair (it's not curly OK?!) and whilst my eyebrows are pretty scrappy, my eyelashes are the best they've ever been. I have an eight inch scar across my back, and others on my side and front. My finger nails have grown through and are now normal (and only two toenails still carry beau lines and discolouration). But I am still me, I am still an image bearer of God, I am still beautiful. I have, from time to time had to bite my tongue when others have commented on my appearance. I have learned what it is to be stared at or avoided because I looked different. I have also learned that most people adapt quickly and see the person not the damage.
I read something somewhere that said words to the effect that having cancer teaches you who your true friends are. That may be true, but what I think it has shown me is that people have different ways of coping, and that sometimes the reactions can be surprising - both positively and negatively. I posted a while back on the fight/flight/freeze reflex and the fact that whilst we can't alter our basic instinct, we can, in my view, manage its impact. If I am totally honest, I was disappointed to discover that some people coped very badly with my diagnosis, some of them people I had thought would have been very supportive. But also I was pleasantly surprised by the way others showed tremendous empathy and insight and somehow knew what to say (or not) and do (or not). A year on I still have the same set of friends I began with, no-one ultimately ran away, though a few are perhaps a bit more distant now. And I also have some new friends, people I have met through and because of what I (or we) have experienced. Everyone has their own coping strategies, it's just some are more helpful than others for the person whose issues are being coped with!
I have also learned to understand better my own coping strategies - and how they can help or hinder myself or others. My humour is still bad, and sometimes quite dark, so I have to be a bit careful with other people's feelings.
The Kindness of Strangers
"A stranger is just a friend you don't yet know" - I think that's a bit twee but at the same time it has a degree of truth. I have been very touched by the kindness and interest of people who have visited this blog over the last year, some of whom despite not knowing me from Eve have sponsored me for my charity walk. I have appreciated the emails and PMs (private messages on the bcc website) from people who have wanted to talk to me, to share thoughts, to ask questions. I have been blessed by smiles, by ideas, by hugs (literal and cyber) and conversations with people who really do 'get it' in a way that I wouldn't have this time last year.
Independence Needs Appropriate Dependence
I have always been very independent, determined, self-sufficient and stubborn. The last year as taught me that sometimes in order to be independent, it is necessary to accept help, to be appropriately dependent. People were very good at allowing me to deal with this in my way, and in return I had to get better at asking for help when I needed it. I still find it frustrating that I can't help clearing up big stacks of chairs any more, or that I am not meant to life anything heavy with my right arm, but I know that that's the way it is. I am glad I have learned to let people help me whilst I am young enough and adaptable enough to cope with such a change of approach. I am still independent, I am still good at devising solutions to problems so that I can do things on my own, but I have also learned that seeking help is sometimes a better solution. I'd like to think I'm a 'more rounded' human being in this repsect.
Cancer and Christianity: Seeking Authenticity
One in three people in the western world get cancer. Globally, something like one in three people are Christians. It stands to reason then, that one in three western Christians will probably get cancer, and maybe, I have no idea, one in three people with cancer are Christians or people of other faiths. Whatever the numbers are, and they don't really matter for my purposes, Christians on the whole - or at least the church expression of faith - don't seem to 'do' disease or disability very well at all, and cancer is an exemplar of this.
I recall writing something at the time of my diagnosis along the lines of 'Did God cause my cancer? No. Did God allow my cancer. Yes.' Not everyone who read those words was happy with them, but a year on I stand by them.
And I stand by the decision I made at the start that I was going to be authentic - to admit when I was scared or angry (I was periodically very scared but I don't think I ever got angry) and not to play along with some kind Pollyanna glad game that made it all seem alright when it wasn't.
To what extent I succeeded, I don't really know. Compared to some people I had a really easy time of it, so, apart from my over the top fear of anaesthesia, being authentic wasn't too hard.
With that wonderful thing called hindsight, I guess I could have chosen to make this a much more private journey. I could have told only those who needed to know and I could have left this corner of blogland a cancer-free zone, at least in terms of explicit mention. The decision to 'go public' was partly about self-preservation - by posting stuff, I could avoid endless phone calls and emails (selfish) and those who wanted to check up on me had easy access to the latest news. But more than that, there was a sense that someone who was a 'public Christian' needed to break the taboo of 'twee Christian responses' and tell it like it is.
I have constantly been amazed at the emails and PMs I've had from people who have found some of my stuff helpful, either in learning more bare facts about breast cancer treatment or in feeling that finally someone was being a bit more real. The number of readers of this blog tripled during the first three months of my treatment and is still substantially higher than it was a year ago. It seems to be scratching where some people are itching.
There were two aspects to the 'going public' - one was letting Christians know I had cancer, and how that was affecting me, the other was letting people I met know I was not just a Christian but also a public-one, a minister. It is no accident my avatar on a bcc forum uses the picture of me in my 'preacher' teeshirt. I have been humbled and encouraged by people who contacted me because of this, and by those who asked me questions about faith - from my Hindu radiographer to the person who sought my view on euthanasia and all stations in between.
Because I went public I have met, literally and in cyber-space, many wonderful people who have allowed me to share parts of their story/journey. That's an enormous privilege.
A Never-Ending Story
And so, here I am, a year on from when it all began. The active treatment is ended and, apart from a few bits of 'tidying up' by a plastic surgeon and a daily dose of drugs, I can move forward. Except of course the story doesn't ever end. If you visit the fora on cancer websites, you find people popping back who were treated five, ten, twenty years ago. People who are often still NED but know that somewhere in a dark corner lurks that 'what if' fairy. And people who have faced recurrence years after they thought they'd been free of cancer.
I keep thinking I've got to the end of blogging this stuff, keep thinking I ought to let go and move on... and so far I haven't managed to do so. I guess the truth is that just as cancer is now part of my story, I am now part of its, and until we find a cure or until the eschaton, whichever happens first, the story carries on. I hope I will now start to write about it less... but please forgive me if/when I lapse
There are so many people I could, and probably should, thank for their love, prayers and support in the last twelve months (though most were mentioned in my almost end of treatment post) and I hope you'll forgive me if I dedicate this post to the women who've walked this path with me, whether literally here in Glasgow or virtually online. If I named names I might miss someone, but you know who you are (if you read this stuff) and I thank you.
Cancer, in all its forms, is a serious disease, let's make no mistake about it. Many cancers can be avoided or detected early by screening or self-examination. Man or woman, old or young, please, do the checks, take the screeening - you don't want to walk this path and many of you won't have to if you take control now.