Loy Krathong revisited – three years on….

As I headed to the airport yesterday afternoon, I passed an increasing number of roadside displays in preparation for Myanmar’s Full Moon Tazaungdaing festival celebrations, keenly aware that I would miss the festival. However, thanks to an article in the in-flight magazine, I was pleased to learn that the Thai Loy Krathong festival would be today.

I was pleased, but the realisation also hit me with a jolt.  I was instantly transported back three years to my first experience of Loy Krathong. In 2009, the Festival fell on November 3rd, one month and one day since life changed.  On that day, three years ago I had just had my first chemo, I had had two rounds of surgery and I was starting to lose my hair.

I wrote a short blog post, which makes emotional reading for me.

It is another day for quiet reflection and deep gratitude.

 

 

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Profit and loss – Cancerversary reflections

Last Friday was a fairly ordinary day.  I woke before the alarm, looked out of the window and was pleased to see that the dusky daybreak sky had only a few clouds.  That meant that my dawn swim was possible, always guaranteed to give me the best start to the day.

So why, in the mid morning did I become aware of a sense of gloom?  I was aware of a blanket of sadness slowly wrapping itself around me.  I could feel unprompted tears, behind my eyes as they became watery at various points throughout the day.  The only reason I can think of is that I am a bit overwhelmed by the immediacy of my landmark days, especially what I can’t help thinking of as the Big Cancerversary, followed rapidly by the anniversary of my major surgery.  This is probably not helped by the fact that this comes at the beginning of October and the internet, particularly Facebook and the blogosphere have dizzying numbers of messages, promotions and snarky posts swirling around.

It is 2 years ago today from hearing Dr W tell me “this is highly suspicious of cancer”.  It is 2 years since the world as I knew it shifted irreversibly.  October 2 is the day I mark as my “cancerversary” because it is the day I started to live life through the Breast Cancer lens. I have noted the irony previously or being diagnosed at the start of October which is a sure-fire way of raising awareness in one’s immediate surrounds.  And self.

This deep sadness is mixed with a feeling of ingratitude and guilt.  Why am I not more appreciative?  I am still alive, 2 years after hearing the earth shattering words.  I am presently, until the Big Check next month, living with NED.  Apart from the usual concerns I do not have a specific reason to believe that the cancer beast is back.  So why am I not more upbeat and chirpy?  And to be honest, I really don’t know.

Last year I approached my first anniversary season without this sadness.  And of course it was such a big milestone, one I had truly believed I would not reach and which had seemed so distant in the thick of treatment.  I wrote a cathartic “letter to cancer” as part of the process.  I had a quiet and reflective day.  and blogged about it all of course.

I thought about writing another letter this year, but that didn’t feel quite right, or really what I wanted to do.  Part of me doesn’t want to give cancer the added attention, even though it has plenty of my attention. And to be honest I don’t really have anything new to say.  And cancer certainly has nothing new to say to me.

What does come to my mind though, is just how much I have lost and how much I have gained because of cancer.  I am afraid I have no gratitude to cancer for making me a “better person”, or more appreciative of the good things.  I think I have always appreciated the good things to be fair.  I have always been a carpe diem kind of girl.  If someone presented me with a remote control and said I could re-wind to my life before cancer, I can’t think of anything I would truly have done differently.  But now I find I have a deep sadness related to my diagnosis which is just kind of there.

This lack of appreciation, however, does not mean I am not thankful for some pretty wonderful gains.  The fact that family had literally dropped everything to cross the planet and be with me, bringing the most thoughtful things which I could not get in Thailand and which I didn’t even know I might need always brings a wobble to my lower lip.

I have also “met” a host of incredible people through purely because of cancer.  This has been through blogs, facebook and a small number of “real life” women too who have been diagnosed and treated in my neck of the woods.  These have developed into close friendships and invaluable support.  That would simply not have happened without the diagnosis and my life is enriched through knowing them.  I have been blown away the warmth, humour, attitude and smartness of my new ”thanks to cancer” friends.

I have also learned a whole heap of stuff, particularly about cancer and the real nature of the beast.  I had really lived in ignorance and understood very little about it.  I have also particularly learned about the reality of metastasis and that it can happen even when cancer has been detected at an early stage.

On another vein, I am probably at my fittest for longer than I care to remember (although I certainly do not look like it, ironically) thanks to daily exercise.  I make no secret that this discipline is related to my taking control of the few factors which are in our hands relating to recurrence.  Gym or recurrence?  Not a lot of choice really!  Not that I take it as any guarantee, but I do know that if the day comes when mets are found, I can put my hand on m heart and say that I have done what is in my hands to reduce risk.

I am more proactive in trying to have a more healthy work life balance.  I protect my leisure and creative time.

Another thing which I have gained in a sense, is a lessening of anxiety and fear of hospital procedures.  (Is a reduction of something a gain?  When it is a good thing then I guess it is.)  I will never be fearless when it comes to needles, scans and surgery but they are less daunting these days.

So I have truly gained a great deal.

That is what I must seek to balance against the losses.  I have also lost a fair amount.

In the immediate and tangible, I have lost one breast.  That is the most striking, daily ever present loss, and one which I feel physically, emotionally and practically.

I have lost movement in my left arm thanks to cording, evident in the existence of Twang Arm.  My range of motion is quite limited and although we have a level of fairly peaceful co-existence, it is painful and uncomfortable as well as less than fully functional.

Connected with this, I have lost the ability to do some very basic, taken-for-granted activities, like shopping.  I am no longer able to easily wear various styles of clothes.  Tops which go on over my head are too much trouble and discomfort.  Tight sleeves are out.  It is amazing how much that restricts what is available.  And I don’t even need to start about trying to get suitable, comfortable bras especially at a price which does not mean selling all worldly goods!

Perhaps more striking however, are the intangible losses.  Being very weak during chemo when travelling between Yangon and Bangkok for treatments stripped me of my independence and confidence to do things which had been a regular part of life.  It hit me hard that I could not easily travel independently, as well as many other activities.

Connected with this is losing the readiness to plan in the longer term.  I plan in increments of 3 months, relying on getting through the next round of checks before I plan anything significant.  I have a sense that it is “tempting fate” to plan beyond the checks and lack confidence to make firm plans far ahead.

I think that the greatest losses are in fact, connected with the gains.  Specifically with the gains of new friends.  Before diagnosis I knew of only a very small number of people who had been diagnosed with cancer.  I had never known someone who was actually going through cancer treatment, particularly chemotherapy.  Now I have a number of personal friends who have been diagnosed and many, many more online friends for cancer is a big presence in their lives in a variety of ways. Where friends have been brought into my life by a combination of cancer and the internet, some have been stolen by the same benefactor.  I was distraught to learn of the Bad Fairy’s death last year, the first time one of my new cancer given friends became a cancer stolen friend.  Every cancer theft is one too many and hits hard.  And as well as the grief of losing someone, there is the added dimension of being blatantly reminded of our own particular vulnerability and mortality.

This cancerversary might have a sombre mood this year, but I do take considerable note of the fact that after 2 years I am indeed still here.  I am feeling well and strong.  And if the next checks reveal nothing worrisome, my prognosis improves statistically.  While I might not be able to bring myself to say “Happy Cancerversary” I can take enormous appreciation that I can say “Cancerversary” and aim for many returns of the day.