I was back in Bangkok on Tuesday morning, on the homeward leg of my long leave, and waiting to see my endocrinologist, Dr A after four weeks on the road. The metaphorical road that is, as well as the physical one. My leave had seen me trail from Yangon, to Bangkok, to all corners of the UK – London, Bristol, West Lothian, Oban/Lismore, London, back via Bangkok to Siem Reap and back to Bangkok. I had travelled on aeroplanes, buses, boats, trains, cars, ferries, underground trains and tuk tuks.
After my stop off in Bangkok to see Dr A and attempt to pack all of the bits and pieces I had accumulated over the course of the journey, I would return to home in Yangon. Back to “auld claithes and porridge”. This is an expression from old Scots and it translates directly, as old clothes and porridge. It essentially means that holidays are over and it’s time to get back to work. After my gadding about the world, it certainly fits!
One of the tasks I had successfully accomplished on my travels was to replace my elderly and now sadly incapable laptop with a newer, young and highly attractive model from which I have since been inseparable. Along with good internet connections. So on Tuesday morning, I was sitting in the hospital waiting area, with my sleek notebook, rather excited as I knew that it was the set time for the weekly Twitter discussion “#bcsm” (which I think stands for Breast Cancer Social Media – but perhaps not, I am happy to be corrected) . This discussion takes place over one hour on Mondays at 9 pm EST (US time zone). Because of the time difference I have not yet managed to connect with the discussion but often saw the wrap up points. I was delighted that I should be able to join the discussion for a good part of the hour while waiting for my appointment. It took me a bit of time to work out the technicals to enable me to join the broader discussion, and remain able to post, but once able to do that I found myself joining in with a big smile across my face. It was so good to be involved in this live and lively discussion.
This week the topic for discussion was on “”Is there a new normal after treatment is over?” There are a number of questions in here, including recognition of the often unexpected strangeness of the period after the acute and heavy cancer treatment has finished, when everyone expects you to be “back to normal” and “all clear” from cancer. Within the questions of whether there is such a thing as a “new normal” there is the squirming “can of worms” over how to label such a “new normal”. There are as many takes on these points as there are feisty Bloggesses and Tweeters, each view as valid as the next and it was, indeed a lively and spirited discussion.
I have been unable to come up with a term which I feel comfortable with for the “new normal”. Additionally, my own take on this is that it misses the very thing which we fear and which plays a large part in defining this strange time. Recurrence and metastasis. There, I have said it out loud. Living with and managing this fear is something we have to learn to do. Of course that is part of a “new normal”. This is fine so far, but the bit I have difficulty with is that for those who have recurrence and/or mets, or who have been Stage 4 from diagnosis, we are not talking about a period “post treatment”. Treatment is a part of life. although I am not in that situation myself, it doesn’t feel quite right. So for me, the debate continues while a variety of vocabulary and language is shared.
But that is just my take on it. I know that there are as many views on this as there are women diagnosed with breast cancer. And no one is wrong, we are just different and feel differently. As with everything else, it comes down to respect of each other’s view points.
I find that I tend to see everything now through a different lens – the breast cancer lens, and this influences and affects planning and thinking in pretty much everything I do. Up to now the nearest I have come to finding something to describe this time, perhaps influenced by working in the NGO world, is an acronym! It is simply LPD – Life Post Diagnosis. The defining moment for me was diagnosis, and nothing can turn the clock back nor revert to that time before hearing those words.
As I return home, and prepare to return to the routine of life, work, blogging I cannot help but ponder on the differences and similarities between the “auld claithes and porridge” and the ongoing LPD.
The underlying sentiment of “auld claithes and porridge” is that it represents a return to “normality” after a time of holiday, leisure, pleasure and perhaps even decadence. Well that certainly applies to my period of leave and there is plenty of photographic evidence to illustrate the point on the sister blog! It often implies an upcoming period of frugality to compensate for overspending too! Pretty much the opposite is true for that post treatment life. After the mental, emotional and physical ordeal, we yearn for the chance to get back to normal. And that is when it hits us that Life will never be the same again, that as we move forward, we tread rather differently and what we once considered “normal” is simply no longer there. We have to find our space and our place.
Unsurprisingly there were many points of view expressed during the Twitter discussion. Happily the #bcsm session wrapped up just as I was called for my appointment to see Dr A. My consultation was fairly brief – bloodwork good, thyroid stabilised with the meds, sugar stable and not yet in the diabetic range, and cholesterol excellent (surprising given the number of eggs I have eaten in the last month. One of the hazards of travel and breakfasting in different places). Dr A was very happy with my progress, and signed me off for 6 months! Now that does really help me feel as if I am moving forward.
I have returned to Yangon feeling refreshed and revitalised. I have enjoyed special time with people close to me, have explored and adventured, finding most of all a confidence and strength I feared I had lost. Now it is time to pick up the reins of regular life, Life Post, and indeed Beyond, Diagnosis. A critical element of of my LPD is without doubt the online engagement I depend on, so perhaps my version would have to be “auld claithes and blogging!”