I cannot quite imagine how this roller coaster cancer ride might have been if I had been diagnosed years earlier. Not necessarily in a world before the internet, but perhaps in a time when it was not such an integral part of life and particularly before social media became more common than chatting to your neighbour. Back in the day when having a PC in your home was the ultimate in connectivity, and when we used to store our data on those unreliable floppy discs. How life has changed.
I know that life in this post diagnosis world would have been much more difficult for me without a major online dimension, even although it is hard to imagine just how that might have looked. From the time of first fear and concern, when I entered into an unhealthy co-dependent relationship with Dr Google, through a process which saw me using information forums and connecting with others going through treatment and similar paths. From the moment I closed my eyes, held my breath and clicked “publish” on the very first post of this blog. Through a process which saw me connecting more and more with the developing online community, discussing the most personal of medical details with “strangers” on the basis of trust and solidarity, crying when new found friends were taken, venting at injustice, inequity and instances of stupidity. For me, the internet and social media have played a major part in my cancer experience. An important element of that is of course that I am in a country so far from my origins. Where the medical experience is not so different, but the wrapping is unfamiliar. Language, cultural beliefs, non-medical support and even the availability of non-Asian wigs add layers of complexity when navigating a new and frightening terrain. Of course, this is individual and the choice which has worked for me. I have close friends who have gone through this similar path and had very different levels of engagement with the online world. It is not a case of what is right or best, but which approach works for each individual.
And for me, the online world was what made the difference.
Through this online community, I have connected with (mostly) women blogging through breast cancer and as with any friendships, some resonated particularly. I remember early in 2011, being directed somehow, to a blog called After Five Years. Very quickly I became an avid follower of Lauren’s writing. As the title clearly says, this was a blog about life five years after diagnosis. When I first started reading Lauren’s work I did not realise that this would become a full year of weekly posts, exploring a plethora of aspects of breast cancer, and its fallout five years later. I loved Lauren’s exquisite writing and thought-provoking insights. I could hear a southern drawl when I read her words and she brought a wisdom and understanding of great depth, in a way that was easy to absorb. I used to wait for the “ping” on my Twitter feed on a Sunday evening on my side of the world, to tell me that Lauren’s weekly post had just been published, and I would rush on over to read it.
So much of Lauren’s work resonated – fear of recurrence, anxiety and stress through follow up scans and checks, venting over lack of understanding and sensitivity of others, the burden of a cancer diagnosis on those around us. I realised the other day that I had adopted one of Lauren’s approaches when I shared my fear that I had “toe cancer” following some sudden twinge. This was borrowed from Lauren’s experience of “thigh cancer”. I can share a fear in a way which makes people laugh instead of adopting an embarrassed or dismissive expression if I describe my worry about “toe cancer”.
However, while a great deal did resonate, there was one Very Big Difference between Lauren and me. The clue is in the title of her blog. While I had newly emerged from that year of treatment and was in an early recovery stage, with fuzzy clumps of cotton wool hair shouting CANCER loud and clear, Lauren was a whole five years from her diagnosis. Five years seemed so far away, in some kind of far off and safe place. I was an infant in the first weeks of Kindergarten and she was a prefect at the Big School. I could not imagine, and was frightened to think of a time so far ahead as after five years.
Yet here I am. This evening I will step over what is seen as an important line in cancer terms, into the after five years. Late in the evening of October 2 2009, Dr W gently spoke those words which were to have a greater impact than any others any in my life that I can think of. “This is highly suspicious of cancer”. Today is the day which has become my “Cancerversary” even though the official diagnosis came three days later. This was the moment I stepped through a set of swing doors into a territory I did not want to be. A set of doors which close behind you and will not let you back into the place you have left.
Early in my treatment, I remember apprehensively asking Dr W about life beyond the immediate treatment. He explained to me that once the rounds of chemo and radiation were done, and if there had been no regression, then I would be recalled every three months for follow up checks. At the checks which were timed around the anniversary time of diagnosis, there would be a more in depth monitoring which he calls the Big Check. If all is well around the two year point, I would graduate to six monthly checks. And at the five year point, again unless there is any reason for more frequent review, you are released into a world of annual checks. I remember listening avidly as he explained a life beyond the one where treatment and appointments drove every other aspect of life, and felt a quiver of hope that there was a future, a tomorrow and that one day life could be different. It felt incredibly far away, but knowing that such a time could exist provided a wonderful boost. My own path has differed a little to this, due mainly to the embolism and its accompanying bonuses. I reverted back to 3 monthly recalls for a bit and I do not expect to be waved into the distance for a year if all is well next week. Particularly while there continue to be little extras and while the endocrinologist continues to call me back for three monthly reviews.
I have approached this five year benchmark with mixed feelings. I cannot truly breathe out and say “after five years” out loud for at least another week. Because there is an unwritten, unspoken expectation in there. After five years with no recurrence, is wrapped up in those words. And I know I cannot even think that while the appointment slip for my Big Check is sitting in an envelope with frightening words on it such as “mammogram, ultrasound of upper abdomen, chest X-ray, blood work for CEA, CA 153, (tumour markers) PT/INR (for the embolism) and a range of other tests. The appointment slip holds me in a limbo for at least seven more days, with its bold 9 October against the various tests. I have to get through each of these, without any “flags” for follow on tests, such as bone scans or the dreaded CT scan. I have to wait, holding my breath as Drs W and W2, my surgeon and my oncologist review the scan results and I wait for the announcement that all is or is not well, that there are or are not worrisome signs which need to be investigated further. Only if, and when nothing sinister is revealed can I close my eyes, and say after five years out loud.
There is another dimension to the after five years which I really need to articulate. That relates to the widely held belief that five years represents a magic line, when you step from a world of shadow and darkness into a bright, shiny world twinkling with some kind of protective fairy dust, shaking off any fears or anxieties. That after five years means CURED. Out of the woods. Cancer free and no more need to worry. Survival to five years suggests that you can relax, as it won’t come back after that timespan. With many cancers that is the case, recurrence after five years is so unlikely that you can be considered as near as you can be to “cured”. But breast cancer is one of those sneaky, deceitful cancers that can lie dormant for years and even decades before it decides to reactivate. Around one in three of those diagnosed with an earlier stage cancer will go on to develop metastatic breast cancer. Some cancers are just wired that way while others can be eradicated by the gruelling treatment. The thing is, we don’t know which ones are programmed to destruct and which ones can be truly banished. We live with the knowledge inside us that our cancer might come back, even though we can be living with NED for years.
For me, after five years is an important milestone, not because I can skip off into cancerfree land, but because it represents a serious chunk of time. Half a decade. And half a decade, when you have heard the cancer words and stared mortality right in the face, is a wonderfully long time. Half a decade brings a perspective to living beyond diagnosis, which is impossible in the earlier days.
So if you ask me how I am going to celebrate my after five years, please understand that I am not being negative or defeatist when I say quite clearly that I don’t want to celebrate. This is not a celebration. It is, however, a time for thankfulness even before the Big Checks of next week. There is such a difference between celebration and thankfulness.
I am thankful that even though my cancer was advancing, that it had not travelled beyond the lymph nodes. I am thankful that I have access to care and treatment of the highest standard and a wonderful medical team. I am thankful that I am surrounded by support and love of family, friends and colleagues and an online community. I am thankful that despite a rocky medical road, particularly surviving a pulmonary embolism and living on a cocktail of ongoing meds, I am in reasonable health and strong enough to embark on gentle adventures and visit new places. I am thankful that my own changed perspectives and priorities have galvanised me into a changed lifestyle to achieve life goals NOW and not let these slip from view. I am inordinately thankful that I am able to continue life and work in such an inspiring and fascinating environment.
It is also a time of unexpected and intense emotion. I was blindsided by tears before breakfast this morning. I shed surprisingly few tears at the time of diagnosis and through treatment. Why I crumbled this morning, I don’t quite understand but I have a game face to find before I set about an ordinary day.
Of course I have no idea what is ahead, no sense of whether the Big Checks will bring a new, unwanted meaning to after five years if there is anything untoward in the tests. Of course I am acutely anxious and afraid of the checks. But I do know one thing. Today I have reached my after five years and I am still here to keep telling my story.