In the light of day

After  the grey day we had yesterday, dominated by the outer tendrils of Tropical Storm Nesat, spilling its endless rains throughout the night and the whole day, the last thing I needed was a sleepless night.  But there I was, checking my watch at 3 am, 3.20 am, 4 am and right through until the last check I remember, when it was approaching 5.25 when I finally fell asleep.  Our Twitter BCSM discussion this week was about cancer anxiety, and how it affected us.  I didn’t need to be reminded in the dark hours of the night.

I was startled by the jarring sound of my alarm at 5.50, rudely shattering the sleep which had finally descended. I always struggle to get out of bed, even with the prospect of a sunrise swim, and even after a decent sleep.  The last thing I wanted to do this morning was to leave my cosy bed and head out for my swim.  It took a good few precious minutes to drag myself out of bed and look out of the window.  Yesterday the rain had been torrential and I had been forced to forgo my early swim.  Oh, for a rainstorm and an excuse to go back to sleep today!  The sky was preparing for daybreak, but through the distance I could see a change in colour on the horizon.  A pinkish, orange glow.  That could only mean one thing.  That the clouds had thinned enough to promise a sunrise.    So nothing to sabotage today’s swim.

I must have groaned as hubby stirred in his sleep.  “You’re really tired.  Don’t go for your swim today” he grumbled.  “I have to” was my response,  “I have to”.  I love my morning swim, I know it makes my day, but I also know that one of the strongest motivating factors is the knowledge that women who exercise regularly, statistically have less recurrence, according to studies I have read.  So I have to swim.

I moved into automatic mode and put on my swimsuit and casuals, gathered my work clothes and put them into the small rucksack lying waiting for its daily outing and headed out.

The sky was still angry in places, matted clumps of cloud strewn across the sky marking Nesat’s reach.  I walked through the little lane past three girls sitting, beside their basins of fresh fish, chickens and shrimps on their way to the market.  They stop there most days, resting and chatting before they pick up the basins, put them on their heads and move on towards the market.  They giggled, as they always do, when I pointed to each basin and attempted to say the words for fish and chicken in Myanmar language.  As always, they gestured to my watch and I gave them my daily attempt to tell them the time.

The school yard I pass through had rivulets in the sandy ground from the torrential rains.  I passed the Mohinga stall, huge aluminum pots steaming and the smell of fishy stock meeting my nostrils.  Its popularity evident from the number of new, flashy cars parked outside.

As I approached the pool a few drops of rain fell.  It was too late to turn back though, and the sky was giving no clues as to whether this was the start of another downpour or just a passing threat.

As soon as I hit the water, I’m awake!  The pool was cool, cooler than usual having missed the sunshine the day before.  Before long I am breathing more deeply, soothed by the sound of the water as I move through its mass, and I feel my mental greyness lifting.  There are only three of us in the pool, each in our own space, physically and mentally.

As I plough up and down the length of the pool, I am glad that Twang Arm prevents me from being able to swim a proper front crawl.  Instead I swim with my head above the water, my usual steady breast stroke which enables me to take in the sounds and colours around me.  The sun has already risen, as I can see from a bright area behind the clouds, low in the sky.

Then something shifts.  The walls of the surrounding building turn pink, shadows of large palm tress appear and everything brightens.  As I turn to swim northwards again, I see that the sun is peeping out over one of Nesat’s tendrils, casting brilliant sunlight and immediately illuminating the world.

My own world has suddenly transformed a different and brighter place.

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Words of apology and thanks

It must be a nightmare to be close to someone who is going through, or has been through cancer treatments. My poor hubby J developed the starting symptoms of a head cold recently. A direct gift from me in all likelihood. As he started to sniffle and descend into misery (as I had done just a few days previously) he looked to me for sympathy. And what did he get? I think you probably spell it P-A-H. Pronounced PAH! I heard myself think “what you have a little teensy headcold? Pah! Just a head cold? Are you complaining? How can you complain, when I have been treated for CANCER? Pah! Pah! Pah!!!!” I might not have said these words out loud but I am ashamed to say that they most certainly flitted into my mind.

No matter what type of cancer diagnosed, it calls for gruelling treatment and a massive and unwelcome emotional impact . Many have been through a triathlon from hell (surgery, chemo and radiation). We have heard the dreaded “you have cancer” words. We are and have been subjected to the most degrading and challenging treatments even though often we didn’t feel ill in the first place. We have lost much, including often our hair, immune system, taste ability, dignity, use of limbs and experienced impaired digestive functions. And the special chemo delights – nausea, vomiting, loss of taste and appetite, complete refusal of the digestive system to function, that appalling constipation/diarrhea alternating combo, weakness, loss of sensation, acquisition of foul taste to name just a few of the side effects I found more memorable. Now that was a challenge, that was as about as horrible as you can get. And this is not over in a matter of days. Our thorough treatment plans span for weeks and months ahead of us, into an unimagined, unimaginable far distant future. So what happens? We seem to find ourselves elevated to a new level of respect for the grossness of the effects of treatment added to having to handle that mind altering bonus of “face your mortality” that cancer brings. Compared with a head cold that is just mega trivial. Isnt it?

Now let’s re-wind to those pre-cancer days. I remember well that horrible miserable feeling when you feel the first signs of a head cold. The dreadfull sensation of suffocation and general malaise. It might be common but it doesn’t make it any the less miserable. And a nasty cold can really floor you. Rationally, I know that I am being unfair in ranking ill health, but emotionally those pangs of cancer superiority filter through.
What about our long suffering partners and family when we are going through gruelling cancer treatment? They support us. They listen to our pleas for a particular food, only to have to eat it themselves when we can’t face eating it. They hold our hands when we wake all hours of the night by a sudden need to vomit. They comfort and reassure us at those unexpected times when the fear grips us. They sit beside us listening to the complicated words of our specialists as we try and absorb what they are telling us, a hand on our shoulders to try and comfort and reassure us that we are not alone. We are in this together.

So this is an apology. I know that I hated chemo, was terrified of surgery and struggled with radiation. I know our partners would all do the same. This does not make me superior. It is another example of just having to deal with something when we are faced with it. It is also an illustration of perspective. Now when I get a headcold, it is almost a laughable relief. But that does not make it any the less miserable. I should not have any grand sense that I have got through the triathlon. For most of us, if we are faced with it we know we do not have much choice but to get on with it. But before this horror, I was just as miserable with a headcold, as scared with the prospects of a needle stick, and as repelled with the thought of surgery. And let’s be honest, I still dread the unpleasantness of medical procedures.
It might be easy to say “Pah!” to a head cold while I am on this side of treatment for cancer for now, but I completely respect and acknowledge that I can not be complacent or snobbish about the degree of illness.

Cancer and a headcold might not be equal cousins as illnesses, but any ailment must be respected, particularly in those care for us and see us at our lowest. Our carers must be equally respected and supported when they are sick.

Even if it is “just” a head cold!

It’s that time of year again…. Landmark Days and Extreme October approaching rapidly

I have a chill in my stomach as I see the date on the calender.  We are rapidly approaching a time of year when I am dragged kicking and screaming headlong into a face-off with my encounter with breast cancer.

Firstly, Breast Cancer Awareness Month, which has turned into a Pinktoberfest of every imaginable product marketed with pink ribbons and pink anything in many parts of the world.

Secondly, it is a period loaded with my own Landmark Days, that is, anniversaries of  significant cancer “milestones”.   The first one is rapidly speeding towards me and is now less than 2 weeks away.  That is September 23, the day I discovered “the lump” and the day that it all started.  Being diagnosed at the beginning of October is a cruel move and means that awareness stares me in the face even more than usual.  And just to add an extra bonus frisson, I will have my Big Annual Check in the middle of October.  The stomach churning game of “Hunt the danger signal” Just in case there was any in danger of breast cancer slipping my mind.

Last October my head was very firmly in the “I-can’t-believe-that it-is-already-a-year-since-this-nightmare-started-while-I-can’t-believe-it’s-only-a-year” space. It had been impossible to imagine the one year point back at diagnosis time.  The one year milestone was a time of intense and mixed emotions.  Now, 12 months, 4 NEDs, innumerable needle sticks, 360 odd Tamoxifen, at least a dozen passionate encounters with Capt Paranoia and 3 memorable adventures I find myself in a somewhat different place.

Throughout this year, as I have parted company with the phase of treatments and appointments you live your life around, I have been able to see things from a slightly more objective perspective.  I have also learned an incredible heap of things, some of which have shocked me and spurred me into shouting out.  And as I am in a different space, I have a strong feeling that the Pinktober month is also taking on a different shade.  It’s more like an “Extreme October”. There is a significant disconnect between the marketing Pink-everything in sight October extreme and the debate (or lack of it) around the need to progress in understanding breast cancer, especially metastatic and widely held beliefs such as the one that early detection guarantees cure.  I find there is another extreme between the excess of marketing in many countries and the total lack in others.  Last year I did not spot one single item of pink merchandise here, and in Thailand I saw evidence of the Awareness month in the hospital but not in the shops.

Last October my posts were mostly reflective and highly subjective.  I marked my Cancerversay by writing a letter to Cancer which probed the thorny personal relationship I had developed with cancer.  My Big Check came at the end of the month and I moved out of the month embracing a new phase.  I think this October will be different.  For one thing, I have learned a great deal from blogging peers about the limitations, shall we call them, of the pink campaigns.  I am far more tuned in to the debate and am learning uncomfortable truths.  The blogs I am reading and the friendships I am making are bringing me into a movement of questioning and challenging which I suspect will become even more vocal as the month wears on.  I have been intrigued to hear that there have been some “overtures” made to some of my snarky, smart blogging buddies to write guest posts on commercial sites.  I sense a counter pink movement this Extreme October.

In terms of Feisty Blue Gecko, I am forming a plan for how I will approach Extreme October posts, bearing in mind how much I love my spot on the fence.  I have a particular plan forming for 13 October which has been designated Metastatic Breast Cancer Day.  (Yep, one day – what a contradiction in itself).

I am intrigued to see how this Extreme October takes shape.

Slipping off the fence

Geckos have very sticky feet apparently.  That is why they can scuttle up and down walls, along the ceilings and in and out of corners without regularly falling onto the floor.  I must have some of that stickiness when I write because I quite like to sit snugly on the fence during many of the lively discussions which we have online.

 

I find myself losing my grip and sliding off the fence just a little this weekend, following a bit of an altercation with Facebook.

I am in the excruciating situation of having been taken in by the latest awareness raising game or activity on Facebook.  A couple of years ago women put their bra colours on their status updates and watched as comments of puzzlement came from the male membership of Facebook.  The idea behind it was to make people stop and think and with the reference being to bras, there was a link to breast cancer.  Hence raising awareness.  I guess.

Last night I saw a Facebook status update posted by a recently married friend, referring to a number of weeks, and craving a certain food.  There was a string of comments, sending warm congratulations and expressing delight at the prospect of her being x weeks pregnant.  Thinking this was a lovely piece of news, I added my own warm wishes, preparing to tell the great news to hubby J.  It was not long before my friend posted very quickly that this was not about pregnancy and had to issue a very direct update to put folks right.  I was mortified.  I might as well have put my red face right up there on Facebook too, as that is the side bonus of the misunderstanding – it is VERY public. They should add a “cringe” button, as I would certainly have clicked it beside my comment.

Usually I step back from these campaigns a bit.  I don’t want to upset those particularly who have given me enormous support during breast cancer.  But this prompted an unusual amount of nighttime thinking, which is taking the form of this seriously, “off the fence” rant about this Facebook activity.

So what is my problem?  Why am I particularly struggling with this awareness campaign?

Well, there are a number of reason…………….

  • I personally feel bad for attacking it.  There is a feeling that by taking part in this, it offers support and solidarity to women and men who have been diagnosed with breast cancer.  I feel guilty that I am rejecting the support being offered to me by people I am close to.
  • Awareness raising is about EVERYONE and should not be withheld from a very large part of the population.  Why for women alone?  Men can also get breast cancer.  And how about the men in our lives who have looked after us and loved us unconditionally throughout this.  Is it fair to exclude them? And do men have sisters, wives, daughters, mothers and friends who have been diagnosed?
  • The risqué tone of the campaign also feels a bit unnecessary.  We don’t need to have an undertone or insinuation to make a point.  Breast cancer is not cute, it is not fluffy and pink.  And it is difficult in many contexts even to say that you have breast cancer, it is too private.  There are many cancers which are forgotten or hidden and don’t have the attention that breast cancer does.
  • Updates which clearly suggest pregnancy are at risk of being insensitive to those affected by fertility issues following active and prophylactic treatment.  Chemo and radiation frequently affect fertility.  We affectionately call it the “chemopause”.  Women who carry a BRCA mutation gene often have elective surgery – oopherectomy and mastectomy.  I had never heard of an oopherectomy before my own breast cancer experience.  This is the removal of the ovaries, a procedure taken by many women who are at a higher risk of ovarian cancer.  A step taken by many young women and a dreadfully tough decision to take for many who have to choose between having children and the increased probability or breast or ovarian cancer.
  • Awareness raising is indeed still critical, in many contexts, as I have just discussed here.  However, there is a huge need, as is widely discussed by some highly informed and well researched blogs and articles, for focus on research, targeted treatment and metastatic disease.  If you want to get a feeling for the wide and complex variety of issues around breast cancer, follow the #bcsm (breast cancer social media) hash tag on Twitter.

Please, don’t think that I am ungrateful for the enormous solidarity and support in this game, especially as I know that many are reaching out to me personally offering love and support.  Please know how much I value and appreciate it.  I trust that you know how much I hesitated before deciding to post this.

There is a huge big black storm cloud outside right now, and I feel as if have played a part in its formation!  Time to slip back onto my cosy place on the fence.