Achingly familiar?

I cannot begin to imagine going through cancer treatment as a parent of young children.  Physically it must take an enormous toll.  Emotionally it must be dreadfully difficult and psychologically it must throw up all manner of vulnerabilities and complexities.  As a parent your instinct is to protect your children, and I cannot imagine having to balance that with the ravages of a cancer diagnosis.  Yet, as I have seen time and time again, cancer does not discriminate in any sense and countless families with young children find themselves in the midst of this dreaded scenario.  The topic of parenting during cancer treatment will be the topic for discussion on the coming week’s Breast Cancer Social Media discussion on Twitter (#bcsm).

I will join the discussion, even though I did not have the responsibility for young children while I was going through my treatment. And the main reason for that is because one of the toughest things I have ever had to do was to break the news to my adult children that I had cancer.

Even though my own children were in their late twenties when I heard the life changing words, I still, as a parent, wanted to protect them from the frightening news.  News which terrified me, and news which I did not want to share.  Even though I was no longer responsible for their care on a day to day basis, I felt that I was failing them by having cancer. It is critical to ensure that you share the appropriate kind of and level of information with a child, the older that child is, the more they are aware of cancer and the more they are likely to be afraid.  When our children are adults, though, we know that they know only too well what cancer is and we know how frightening it will be.

When I first found the lump, I kept it really low key and I told virtually no one. I kept it close to my chest, in more ways than one, I guess.  I told myself that there was no point in worrying anyone because it might not be cancer.  After all we had no family history of cancer, and I held on tightly to the fact that 80% of lumps are benign.  What I did do though, was to go through scenarios in my mind for “just in case” I had to break the news.  That way I could prepare myself and then breathe a sigh of relief that I did not need to actually carry out the intended plan once I was sent packing from the investigations in Bangkok.

But of course, it didn’t happen like that.  I did not have any reassurance.  Late in the evening of 2 October I heard those life-changing words “this is highly suspicious of cancer”.  Telling my children was now inevitable.  I had to swing my plan into action and decide exactly when and how to break that news.  I would break out in a cold sweat thinking of it, trying to keep just a little bit longer before I turned their lives upside down, just as mine had been.

My plan didn’t quite work out.  I had hoped that they would both be with family, the morning after a family wedding and that there would be support around them.  So my first message was to my dear sister-in-law asking if she was with them.  Unfortunately she was not, but I was able to make sure she was on hand for support following the phone calls which were now inevitable.  I sent a short text to each, saying I wanted to phone and was it a good time.  My daughter texted back almost as before the delivery report arrived.  She sensed there was something wrong.  Why was I in Bangkok and texting when I was meant to be in Yangon with limited communication?  I remember listening to the ringing and just willing to prolong that precious time before I turned her world around.  Once she answered the phone, I knew that we would cross a threshold into a strange land, and never be able to turn back again.  And of course it was truly horrible, I can’t remember what we said but I remember how painful it was.  I tried to remain upbeat, focusing on the wonders of modern treatment and the fact that I had access to state of the art facilities and wonderful specialists. We also focused very much on the practicalities of getting information during and following my surgery. And at the end of our call, I had to take a very deep breath and do it all over again and destroy my son’s weekend too.  Knowing that I was holding that life changing moment in my hands was excruciating and I had no choice but to follow it through.

This has been very much on my mind over the past days as I have been working on this post.  Then yesterday, I received a notification from Facebook that I had been tagged in a post by my son.  The post referred to a football match he would be going to, a Big Game apparently.  At the end of the post there was my tag “Just hope mum doesn’t call me before the game this time…”.  I thought little of it, assuming that I had committed some kind of “mother-who-does-not-understand-the-importance-of-football” sin by phoning before the match and interrupting preparations, or making him late for the match.  A few replies followed, including “it wasn’t a cheery day last time there …… so I’ve bad memories to banish.”  And then, BANG, further down the comments and replies my stomach turned over as I read “It was the phone call from my mother that morning about the cancer that sticks in my mind ………….”   Unbelievably, as I was writing about that very phone call, my son was also re-living it.  Of course there is an element of coincidence in there, but moreso it demonstrates just how momentous those moments are and how much they are burned into our memories.  When I told my son I was actually writing about this at the same time his reply was “Mum – if you need any information about that weekend let me know. Scorers, time of goals, red and yellow cards – anything!” It was clearly indelibly imprinted in his memory, every single detail.

Since making those calls I have really believed that this was truly the toughest thing I had ever had to do, and I would have done anything in my power not to have had to put us through it.  I still have wobbly moments when I remember the calls, and still re-live them from time to time.

And then I discovered that there was actually something even more distressing and tough.  Something worse than having to tell your children you have cancer.  Three weeks ago, my daughter discovered a lump.  To begin with she did not tell me, as she did not want to worry me.  After all, we were dealing with my father’s ill health and worry about that at a distance so she did not want to add to that.  Eventually though, there was no choice but to tell me.  She had already been to see her Doctor at that point and been referred for an urgent mammo.  She was in that excruciating stage of waiting, waiting and going through every imaginable scenario in her mind.  The mammo appointment came through for last Thursday and I agonised while waiting for updates from the hospital.  Eventually, the desperately awaited message came – but with no real news. The hospital specialist had decided that Ultrasound scan would be more useful than mammo and referred her for the scan to take place as soon as possible.  The appointment also came quickly, for exactly a week later, for the Thursday afternoon.  Thursday as in the day before yesterday.  This was an afternoon appointment, which meant a late night update in my side of the world.  I kept repeating the “80% are benign” like some kind of mantra.  And surely the 80% must be higher for women aged only 31.  I chose to ignore the fact that the self same mantra had not worked for me.  I was in an impossible position.  I could not avoid thinking back to my own time in the ultrasound room, seeing that dreadful spaceship, seeing the technician pegging the contours of the various shapes and keying in text alongside them.  I could not bear the thought of her going through the same thing.  Yet, I could not bear to tell her how awful it was, in the hope that it would be different for her.

It was late on Thursday night, but not too late when I finally saw the message come in.  Palms sweating, I opened it.  The words told me that the scan showed clearly that it was a “cluster of cysts”.  No spaceships.  No “highly suspicious”.  No “sinister” or “cause for concern” labels shielding a need for further investigation and the dreaded change of path. No, they are simply cysts. Beautiful, glorious words “simply cysts”.  At last I could exhale and let out all those terrifying thoughts.

So we have all been re-living that life-changing weekend in October 2009 as we have been going through this latest test.  And for now we can breathe more easily.  But that can not take away the emotional torture we have all been through.  I am left with a consuming reminder that no matter how much our children grow and mature, no matter that they are no longer babies, infants or older children requiring our constant care, they are and always will be our children and we would do anything possible to protect them from the toughest things life throws in our path.

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Stuff Expat Aid Workers Don’t Like

There is a site called Stuff Expat Aid Workers Like (SEAWL) which is popular amongst overseas-based workers because it pokes fun at our profession a bit.   Although my work is generally more in development than aid, many characteristics are shared. For instance, there can be a need to establish your street cred and an inverted snobbery can develop.  Having a lengthy tropical disease CV, a history of curfew experiences in different countries,  photos taken with visiting celebrities, passports bulging with rare and “sought after” stamps and visas, a diversity of experience spanning conflict zones, social unrest, remoteness and climatic extremes all give bonus points for your credibility.  There are all sorts of things which expat workers like and this is one example.

However, there is one thing which we all dread.  That is the phone call, text message or email from family which tells us that all is not well back home.  The news of accident or illness of a loved one.  It sends us into a spin of helplessness, making decisions about when and whether to jump on that plane and hurry back, making three way skype calls in the middle of the night to try and get details.  In my 12 years overseas receiving difficult and unwelcome news has happened three times, twice resulting in that long and painful journey, bracing for an emotional and sad family reunion.

I received a dreaded email on Saturday morning, and learned that my father has been hospitalised.  My world has again been shaken violently.  We are working hard to get details and work out if a visit now, or later is the best course of action.  Turning up from the other side of the world can give an unhelpful message in those first days when things are unclear.  Timing is critical, and also depends on his condition over the coming days.

So at the moment, all the pieces of my life have been thrown up in the air again and I am not sure how they are going to be assembled when they fall. This might be one of those events which turn out to be less serious than feared.  Or it might not.   I will keep you posted.