Aiming for boring, avoiding interesting and ending up complicated!

What a strange 72 hours or so it has been. I have travelled internationally, felt fraught and anxious, been unusually outraged, been carried along a conveyor belt of tests, scans, blood draws and appointments and finally emerged through other side. I feel as if I have been passed through one of those old washing mangles!

mangleAs has been the norm for the past however many checks I have been through now, the process began with a fast from midnight of Monday. On Tuesday morning I presented myself at Counter 2 (of my hospital) with my usual smile and received the usual warm greetings from the staff.Behind my smile there is the usual nervousness as I know I will be guided towards the first step of the day. Appointments, and especially the Big Check feels like a conveyor belt.  I turn up at Counter 2 and from there am set in a process which will spit me out later once I have passed the variety of stops on the way.

And indeed, in no time I was on the conveyor belt and heading towards the first stop – the lab and the blood letting. After that brief stop, I was back on the conveyor belt and being ushered towards the imaging department for the next step – mammogram. Within fifteen minutes I was off again and heading to the X-ray rooms, each time passing one of the places I hate most – the CT scan room.  Bleurgh.

Within 45 minutes of arriving at the hospital, X-ray was also done and I was being led to the ultrasound room, currently in a temporary space due to the installation of a new MRi machine.  Every year, the ultrasound brings a chill to my soul.  I am instantly transported to October 2nd 2009 when I was watching the technician find ghostly spaceship shapes and pegging contours of more than one mass. This year was no different in terms of the sensation of dread and fear, but in the temporary room there was no screen above my head for me to see the images on the screen.  If I turned my head and craned my neck I could see what was going on, but it was preferable just to lie still and let the process take place.

In contrast to the mammogram and x-ray, the ultrasound took for ever.  Occasionally I peered over my shoulder but knowing I understand nothing of the shapes on the screen I quickly gave that up and tried to zone out.  But that was not so easy.  She was paying particular attention to one part of my upper abdomen around and below my right armpit.  More and more cold jelly appeared on my skin and the pinging and pegging started as she worked her way around whatever she was working her way around.  I think that some “priing” noises were the sound of saving an image, another “beep” noise signified pegging a shape. Or perhaps it was the other way round.  At any rate, I could not work out which was which and just listened to the sounds as my stomach tightened the more this continued.  Eventually, she stood up, told me she was finished and walked out of the room.  And that really rang alarm bells – usually I get a little informal feedback, confirmation that there are a couple of small cysts and liver wibbles but nothing to worry about. I hate hearing nothing.  It freaks me out, even more than the undue attention which had been paid to that one particular area which had started out the freaking out.

It is sobering getting cleaned up and changed after these tests and scans.  It all becomes immediately real again.  And I cannot describe the torturing fear in that space of time between scans and review/results. I am extremely fortunate that having my checks in Bangkok , that time is far shorter that elsewhere. I was told to go and eat breakfast, but have no idea what that was or whether I even finished it. My head was focused solely on the repeated scanning of one area and the abrupt departure of the doctor.

Waiting in the area near Dr W2’s consulting room passed in a daze.  I did not even attempt to read my KIndle and could make no sense of the obvius images on the TV with reports of flooding in other parts of the city. I was in another, dimension, suspended and unable to move in any direction.

Eventually, my appointment with Dr W2 came round and I moved into his office. As I sat down, he was reading the scan reports.  There was a great deal of text on one of the pages and I could feel my heart rate increasing as he read over the results with a dead pan face.  Finally he looked up.  “It’s OK” he said.  Your mammogram is normal.  Your X-ray is unremarkable.  And the Ultrasound is mostly fine.”  I could feel my eyes welling as he spoke those words.

I of course asked about the alarming attention of the scan and he told me that there are some “wibbles” (that is my medical term not Dr W2’s – I can’t remember what he called them) on my liver.  My liver is not young – in fact it is the same age as I am and showing what is likely to be signs of aging. He will continue to monitor these marks.  Previously, CT scans have shown up liver wibbles, but (thankfully) I had not CT scan this time.  (I hate them SO much). There are more wibbles but “favoured benign” on the ultrasound.

He told me that my tumour markers were not worrisome – one had risen a little but has been consistently higher wince the embolism so he is not worried.  And the other one has gone down from the slightly upper range of normal to low!  Which is very welcome.  He asked me if I am taking my medication.  He asked me about three times, when of course alarmed me. Despite the heavy side effects I am taking my meds meticulously and told him so.  We went on to talk about the side effects. He has suggested another med which should help with the joint pain and stiffness.  Let’s see how it works. He examined me and noted that my right leg was slightly larger than the left which drew his attention.  In fact it drew his attention so much that he did not even notice my funky toenail art!  That is not comforting at all!  He is also requesting another bone scan on my next round of checks in 6 months which is also a tad disquieting.

Finally I got his verdict.  “Fine but complicated.” With the original Stage 3 diagnosis, the pulmonary embolism, side effects and the need to take a number of heavy meds that makes me “complicated”.  Which is ok, in that it is far better than being “interesting”. I was “interesting” when undergoing the chemo and he would have to calculate how many drips of toxins to give me to maximise the effect of the chemo without over toxifying me! I was “interesting” when I had spaceship lumps and unusual pathology.  No, it is not fun being “interesting to an oncologist”. It is not, however, as good as being “boring”.  That is what I really want to be.  So boring that my oncologist would have to comment on my funky toenails as there is nothing else of interest to talk about!  One day perhaps?

I also saw my lovely surgeon Dr W and he was also reasonably happy with the results.  He asked me how long now since diagnosis, and when I told him it was 4 years and 8 days he expressed surprise.  “That’s incredible” he said.  I am not sure why it is incredible – I prefer to think it is because time passes quickly and not that when I originally presented he did not expect to see me in 4 years time.  I did not ask him why in case I did not like the answer.

So, finally I reached the point where I could get off the conveyor belt, once I had picked up another six months of medication and the paperwork and walk out into the sultry Bangkok evening air two days after I had embarked on this round of checks.  Able to breathe out, at least for the next six months. Which I know is exactly what I wished for.

exhaleI guess that NED (No Evidence of Disease)and I are not exactly walking arm in arm along a sunny path, but we are kind of in the same town.  Maybe we can get a bit closer in 6 months time?  That sure would be good.

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.