I just want to know. I need to know.

The back story.

My usual round of checks took place on Tuesday (7 April). As usual, I turned up for the blood draw, the appointment with the Endocrinologist, Oncologist and Surgeon.  But this time, I also had to report some spinal pain.  I have pain when sitting, and especially when standing up from a sitting position.  I knew I had to report this.  I knew it could be worrying.

The bloodwork was mostly fine. Cholestorol stable, sugar still slowly rising, tumour markers stable, INR a little high. Mr W2 was concerned about the spinal pain though. He has always checked in on any bone pain as my type of cancer can metastasize to the bones. Thus he likes to keep a weather eye on bone stuff.

So, unsurprisingly, on Tuesday he referred me for a bone scan.

That is where the mind takes over and I find myself in a difficult place to navigate.  And so I resort to writing it out.  I write to “download” what is going on in my head.  Not quite to make sense of it, as that is not possible. It is what it is.  It is not about comprehending what is going on in my mind, but about trying to release it from inside my head and draw off some of the pressure. I find that it also captures those thoughts and fears when I am in that space.  Once results are in everything changes, and although I can remember what I felt, the territory has changed.  Irrespective of the results.  It is that space of the “unknown” which is the most difficult, in my view.  Not knowing is excruciating.

I only had 4 days of not knowing, but it feels like an eternity.  In the next couple of posts, I share what I wrote while in that space.  Firstly, I am sharing what I wrote on the evening of the checks, once I returned to my hotel room after seeing each of the Doctors, with a wait ahead for the bone scan, and then the results.

This, I guess, is Part One of the story.  And a spoiler alert – you already know what happens, and that there is no bad news.  But when I wrote this, I had no idea what was ahead.

Tuesday 7 April

8.15 pm

What do you call it when you are so exhausted, stressed, worried, scared that a contradictory calm descends? When you are “beyond” the familiar heightened, palpable stressedness, that peak of anxiety? When all you can feel is a sense of resignation. A space far beyond the spectrum which spans optimism and pessimism. Or hope and despair. I have no idea what it might be called. I just know that is where I am.

I just want to know.

Is this back, lower spinal pain sinister or not? Is it caused by calcium depletion? Is it connected to spinal injury from years ago?

Or is it cancer in my bones?

I just want to know.

I am beyond fear, beyond anxiety and even beyond worry.

I just want to know.

I feel fragile yet strong. Out of the eye of the public, unprotected by privacy, the tears are too near the surface. I blink them away, force my thoughts elsewhere and remove myself to space when I can release, give in to this uncertainty and simply let those tears fall. But when I am alone, unwatched, the tears retreat stubbornly, as if I must keep my composure. Until I know.

I just want to know.

And soon I will know. Only three more days or so. In some ways it stretches, impossibly ahead. Yet in other ways, it is so close I can feel no anxiety about the wait. The wait, the results. Both are bound together. Inseparable.

I just want to know.

In the past I have found myself clinging to the waiting time, knowing that it might be the last days and hours of innocence before test results change life and move me into an unwanted space. Again.

It is different this time. The agony of not knowing is more powerful than the fear of knowing “the worst”. No matter what is ahead, I am simply beyond it.

I just want to know.

I

need

to know.

Backyard butterfly

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Silence, a haircut and flowery shirts

I have been too quiet recently.  Silence usually means one thing in my world.  Worry. This week has seen the culmination of some full-on worry.  So I am very happy now to be able to provide an update. An update which does not contain bad news.

The key elements of the update are:

– A haircut.
– A Doctor in a flowery shirt, nay, an oncologist in a flowery Songkran shirt.  Because a Doc in a festive shirt can’t give bad news, can he?

Last year when I arrived in Bangkok Airport at the start of the Thai Songkran Water Festival, my passport was stamped by an immigration official wearing a flowery shirt.  That’s a first and I can tell you it made me smile.  All of the immigration officials were wearing flowery shirts and broad smiles. So a flowery shirt is a Good Thing. An oncologist in a flowery shirt is an unexpected thing. And indeed he cooperated by not giving bad news in his flowery shirt.

SongkranShirts
I still don’t now what is causing the spinal pain which has been troubling me recently, but a bone scan has ruled out metastasis to my bones.  Causes could be an old injury, calcium depletion (thanks to cancer meds) or old age.  Onc suggests old age.  I high five him.

Hence the hair cut. I never get my hair cut before hearing the NED words. NED – No Evidence of Disease. A haircut is an acceptance of NED. An acknowledgement that there is no imminence of nasty treatment.  Treatment which might cause hair loss.

As always, my preferred way of processing this mess that goes on emotionally is by writing it and there is a heap of blah coming in this space.  I have been scrawling in freehand in the waiting room, in my room at night and even in Starbucks after the injection of radioactive dye before the bone scan. Those scrawls capture what happens in a mind which does not know what the future holds.  They will be shared here very shortly.

But for now, there is no bad news. Just a very long overdue haircut and a Doctor in a flowery shirt and big smile.

Happy Songkran, Pi Mai and Thingyan Water Festivals to all.

The Waiting Room

waiting roomI knew that the word “breathe” was an important one for me this year.  So important, that I do believe that the choice was not in fact mine, and more an insistence.

Nor did I realise that I have in fact been holding my breath for some time now.  For at least three months in fact, since the last round of Big Checks in October.

I have been on six monthly checks since reaching two years on from diagnosis apart from a glitch following the embolism, and more recently with my endocrinologist requesting 3 month reviews.  My last set of checks in October were difficult in that there were some question marks around the tumour markers in particular.  Dr W2 did not find them alarming enough to warrant immediate further investigation, but he felt that 6 months was too long to wait for the next review.  Hence I turned up at the hospital doors on Thursday, clutching my appointment slips, my best nervous smile and that familiar sense of letting go as yu are led through the coming hours of medical process. As always I had fasted overnight, and as always turned up first of all at Counter 2 to set things in motion.  And that is where I was met by surprise Number 1. Yes, I should have the blood draw first, but then was X Ray.  X Ray?  I had no idea that had been requested and when I expressed my surprise the nursing team showed me the slip and the tick against X Ray box.

Things happen so quickly and in no time the blood had been drawn and I had had my surprise chest X Ray, was dressed again and back at Counter 3,  It was not even 9 am! The team suggested that rather than waiting to see Dr A, the endocrinologist later in the morning, I should come back at 5 pm and see both Doctors. This was a real bonus as it meant I could return back to the hotel and have the breakfast which I usually miss due to the fasting and subsequent appointments.  It was surreal being back in the hotel, breakfasting with fellow guests yet feeling that I had somehow already spent the best part of a day at the hospital. The surgical tape and dressing on my arm were a clear sign though that I had not imagine this.

Then begins the Waiting Time.  I adamantly refuse to use this time well because I feel it tempts fate to do anything which resembles planning or makes any assumptions about the future.  The hair appointment is a classic example.  I will not even phone for an appointment to rid my hair of an encroaching silver topping until I have met with the Doctors.  No point in planning a hair cut if the hair were to go again.  Paranoid thoughts, I know, but having had to change plans so many times in the past due to unexpected tests and worries means that I have swung to the opposite end of the planning spectrum during the the time of the checks.  Not until I am at the pharmacy counter with a new bag of meds and an envelope with my results and appointment slips for months ahead, do I return to a planning frame of mind.

After breakfast I headed out to do a few errands, and then headed to a favourite waiting place, a peaceful tea room in a quiet corner of an otherwise manic shopping mall.  This place feels peaceful and although my mind is not, I take comfort in extended pots of tea and people watching.

Eventually, it is time to return to Counter 2 and the start of the nervous, serious waiting.  By this time, I know the score.  I have a number of conflicting scenarios in my head which range from “everything is fine, I am worrying about nothing” through to “I must savour this time, because it is all going to change again…”.

Soon I am called to see Dr A.  Smiles all round.  He is pleased with my bloodwork and examination.  Sugar is stable, so diabetes still held at bay, thyroid stable, kidney and liver functions all fine and the cholesterol has gone down a good chunk.  I had been really upset when the switch to Femara had been accompanied by rising cholesterol levels which diet and exercise did nothing to slow.  So he was very pleased and happy to extend the review time a little.  Though when he saw that Dr W, the surgeon will see me in April, he suggested that we align the checks to save the need for separate visits. Very encouraging indeed.

I left his consulting room with a smile, and returned to the Waiting Area. I realised that he had not given me the set of results as he usually does, and I had not been able to catch sight of the tumour markers. And those were the key results which were in the spotlight.  It was those results back in October which had concerned Dr W2.  And I know that it is not the number which is important, but the trend.  This set of results would show whether there was an upward trend or not, and if so how dramatic that might be.  I started on a new worry trail.  That Dr A had seen the markers and knew that there was no point in worrying me before I would discuss with Dr W2. When I have commented on tumour marker results in the past during Dr A;s appointment he will agree that the result is good or that needs some conversation with Dr W2 if raised.  The longer I waited, the more I found it difficult not to speculate on the number, again veering between willing it to be low and fearing it to be significantly raised.

I never manage to read or distract myself in the Waiting Room.  I sit quietly, watching, waiting and worrying. Soon I heard Dr W2 arrive, his voice reaching his room before he did. The waiting cranks up a gear.

And then I am called to his consulting room and we exchange Happy New Year wishes.  He never beats about the bush and told me that everything was fine, bloods good and the surprise X Ray fine.  And the tumour markers?  I venture.  “33” was his answer.  And that was a good answer indeed. Still above the reference range (which is up to 22.  22 “whats” I have no idea, but up to 22 of them is “normal”.)  When switching to Femara my results jumped from around 20 to 32m which prompted the bone and CT scans and Great Angst.  They have since hovered between 30 and 32 until the checks in October which showed another jump to 37.  Not a huge jump, but again it is the trend which is important. A drop to 33 was good. Dr W2 was happy.  He asked usual questions about bone pain, and continues to keep an eye on bones.  And then he suggested that he review again at the same time as Dr W and then if all is good return to 6 monthly checks.  And that was the BEST piece of information possible, all things considered. Perfect.

I left his room beaming, really relieved and realised that it has in fact been a long time since all of the Doctors have been happy and that things are properly back on track.  As I slowly breathed out I realised that I have been holding my breath for a very long time. I had been particularly despondent at the last set of checks with their “five year” status holding such significance, and with me taking a step backwards it felt.  At last now, I feel I am moving forward.

As always, even with the best of news, I am never of a mind to celebrate or leap around “high fiving”.  Rather I find myself subdued and reflective.  And emotional.  By the time I was in the taxi back to the hotel, I was struggling to hold back those tears, trying to quietly blub.  But that is not easy – I am not good at silent sobbing, and found myself trying to swallow back the strange noises and not give the taxi driver cause for alert!  It was fortunate that the Bangkok traffic was typically busy and provided ample time for composure before I arrived back at the hotel, Relieved, depleted and quietly thankful.

I know that the Waiting Room in April will again be tense, and that there are no guarantees that the good results this time will automatically follow through.  But I do know that I feel lighter than I have for a very long time.  And that is something to hold tight and savour as I continue to breathe deeply and thankfully.

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Toastiness or Timeliness? In pursuit of conceptual clarity and certainty.

I wonder what the internet has done to my mind. In those days when we used to read, make phone calls, write letters and talk to each other, I wonder what were the stimuli for those cerebral wanderings which nowdays a Tweet or Facebook post prompts? Did I even have those wanderings? I am sure I did, I just wish I could remember their nature. Perhaps thanks to the internet, this particular train of thought has been prompted and allowed to take life. How much of our thinking is shaped and changed by the way we receive information in this day and age?

Yesterday, over breakfast I scrolled through the previous evening’s updates and Tweets and was taken by a Facebook conversation about toasters. Yep, toasters. Those handy little machines which churn out yummy toast at just the right level of toastiness according to our toastbuds.  Most of the time.

“So apparently the numbers on the toaster are minutes? I’ve thought for years that it was the degree of toastyness”

And there followed an outpouring of incredulity and shock at the exposure of one of those unshakeable and fundamental “truths”. There was indeed consensus that the numbers on toasters were widely believed to be settings of toastiness and obviously the higher the setting the toastier the toast would be. For the numbers to attribute to minutes was indeed a strange and disturbing thought.

So there followed, on my part, a deal of butterfly-type rumination of this new “truth” accompanied by a small amount of research thanks to Professor Google and sifting of my own memories. I have so many recollections of toast, whether it be too pale or burnt along with the acrid smell of burning.  I have more memories of bread under the grill, smoking, tiny flames flickering upwards as I had forgotten to keep my eye on it yet again.  And hazy memories of warm evenings in my childhood with a toasting fork in my hand, holding the carefully pierced bread over the low flames of the log fire, and producing perfectly brown toast.  After many attempts.

toastEventually, I realised that the question of toastiness and toasters was in fact a fairly shallow matter. The settings most likely relate to time rather than specific minutes. Obviously the longer the time, the more toasty the toast will be. Toast makers have presented this as a toastiness range though, and we have absorbed this as our reference. So the issue is not as earth-shattering as it might have been. But nonetheless, for a short time, and even for such a mundane and shallow matter, my truth and certainties were blown to the wind. And over a fact which I had not even registered as a fact in my mind previously.

And that is the essence of this discussion. There are so many tiny and not so tiny things which we assume to be true yet many are purely assumption and not based on any fact. Even the rocking of a small point of certainty disorients and disturbs. Many of our significant beliefs or assumptions, we do not even know we hold. I thought my parents would live for ever. I thought I would live for ever too. I believed that our family did not get cancer. Being diagnosed with cancer could not have been further from my radar. I had taken as assumption and turned it into a certainty, which was destroyed.

In the case of the toastiness question, I had in fact been deceived into believing for a short time that a fundamental truth had been compromised, where it turned out to be trivial and inconsequential. Sadly the same is not so for so many other truths and certainties which we hold.

After five years…… time stands still

There’s nothing quite like a fresh, new sunrise the morning after a day of intensity, exhaustion and a peak of fear. And there’s nothing quite like being able to watch the colours change, and the shadows morph knowing that the previous days has not brought to bear the fears which you have been harbouring.  Good morning, Bangkok.

bangkok sunrise

The sun was shining when I left Yangon on Wednesday morning. Rainy season is weakening day by day, and the skies are blue although the air is still thick and oppressive.  The flight to Bangkok takes only an hour but on the approach, we had to fly through thick, angry clouds before touching down in a rainstorm.  How can the seasons be so different, when the distance is not so great?

If the clouds were gloomy, my mood was even more so.  The passage of time, even five whole years and seven days, just does not make it any easier. The Big Checks have been looming large and approaching all too quickly. In the days running up to the checks, I discovered a worrying connection between a strange twinge I have been having and cancer progression.  I the  departure lounge of Yangon Airport, I purged a mass of thoughts, spilling them into this outpouring. Writing continues to be my Xanax, until it gets too scary.

Thursday arrived all too soon.  I slept very badly, as to be expected, and felt rough and nauseous.  In my mind this was another suspicious sign. I showered, and slipped out of the hotel before breakfast, having fasted since the evening before. A bright pink taxi was to be my transportation to the hospital, despite trying to flag down a green and yellow one!  The driver was in his own world, singing his heart out along to the music on the radio, word perfect, but tone far less perfect.

Too soon I was closing the taxi door and walking through the glass doors, towards Counter No 2, a tight smile, stomach growling nervously as the team welcomed me like a long lost friend.  Bloods first.  I cannot get used to needles, but the phlebotomists are wonderful and soon filled three vials of blood.  Next I was packed off for X-ray, then mammo and then ultrasound.  Ultrasound is the ones which unnerves me most. I hate seeing the shapes on the screen, I dread the “click, click. click. click,,,prrrring” as the Ultrasound Doctor pegs the dimensions of the shapes she finds interesting, chatting to the nurse and slathering on more cold gel.  “Breathe in.  Hold. Breathe out now.  Again.  Again.  Again…..” My upper abdomen, the scar area, sides are all thoroughly scanned, and i catch sight of some shadowy, sinister figures, losing count of the “click, click, cick, click…. prrrring”, over and over again.  It must be trouble.  So many shapes to peg, so much going on.  There must be cancer everywhere.  I can’t bear to think about it, but if I don’t then I won’t be steeled to hear the review from the oncologist later.  I can’t be niaive like I was the first time, missing all of those clues. Since then I pick up clues from every whisper, every comment and every averted eye. “Are you seeing Dr W today?”, the Ultrasound Doctor asks? I swallow before replying that, yes I am.  I interpret that as another silent clue that all is not well.

It seems very sudden when she stands up, tells me that she has finished and I attempt to wipe all of that cold stick gel off and head to put my clothes back on.

Next are the vitals, weight, temperature, oxygen whatsits and Blood Pressure.  I know my BP is high.  I am terrified.  I have hours and hours before i know what the scans are saying. The nurse checks the monitor, alarming me with her “Huh?” when she sees three red questions marks where the BP reading should be. She looks at me in puzzlement, not quite sure why the machine has decided to express an opinion!  She tries again.  At least there is a reading this time, but yes, it is high.

The morning is half way through, and next is Dr A, my endocrinologist.  I really must look that up one day.  Endocrines.  They must be important.  I wish I knew what they were. No need to see the nutritionist this time, she signed me off with my false 5 kilo weight loss!  Ironically, I have lost another two kilos, but from the correct weight of last time, not the wrongly recorded weight which caused her excitement!  I am not complaining! I am now 4.5 kilos down over 6 months.  Not a great deal in the big scheme of things, but it is a buck of the trend, and that is actually a really big deal for me as I battle the side effects of the smorgasbord of medications.  He notes that my bloods are mostly ok.  Kidney and liver function good, (really?  liver function is ok?  that must be a good sign???_ Haemoglobin slightly up.  But so is the sugar, just a smidgin but edging ever closer to that diabetic range.  However I realise that despite the direction towards diabetes, I seem to be at least slowing that.  Eating habits and exercise must be helping.  But then he highights the cholesterol.  That is again slightly higher than before, the trend again consistent increase.  So ironic, that since switching to femara cholesterol has become a problem.  No longer do I have “healthier levels than Dr A” as he used to tell me.  No, he tells me that it is time for me to start medication to address this as it is not responding the eating plan.  Sigh.  Yet another med.  At another time of day. He also notes that one of the tumour markers has gone up.  It has been hovering about 9 points above the reference range, again since the switch to femara.  It has now gone up another 6 – 7 points.  A bit of a jump.  This is not something he takes care of, he will leave that to Dr W. The last time Dr W saw a rise in that marker he sent me off for CT scans (HATE them) and a bone scan. He waves me off and asks me to come back in 3 months to check on the bloodwork.

We are approaching lunchtime, and I have a long wait until the review appointments with Drs W and W2 to review the results and find out what is going on.  It is far too long to sit waiting, with a mind which is flitting along a spectrum from “it is going to be all right, I always find this wait awful and then I learn that the worries have been unfounded right through to – those shadowy shapes are bad news, the tumour marker is an indication, the other signs suggest that there is really something to worry about. It veers far more towards the frightening scenario than the reassurance.  I really fear that these are my last hours before I hear more life-changing words, before my universe pauses and shifts out of alignment and into a parallel universer in the way that it shifted 5 years ago.  I have to leave the hospital and distract my mind.

The ideal task is to try and find the next Book Club selections and I head towards the Siam Paragon  Mall.  Paranoid, that’s the Mall I am visiting. I head on the sky train, but the time is passing so so slowly.  I try to browse in the bookshop but it is impossible.  Eventually I track down one of the books, but my mind is unable to focus on anything and I know I am likely to lose my bank cards, walk out of a shop without my belongs, or worse, without paying, I am so distracted.  I try settling down with a cup of tea, pouring cup after cup with refilled hot water, and jotting down notes.  I form a fragmented setof notes which I believe will make a poem.  The waiter is called October.  There is a piano which has no pianist and is playing old Gilbert O’Sullivan numbers.  I know the lyrics.  I hope I am not singing them out loud. Friends send messages of support and the tears which are too near the surface have to be physically restrained.  I see to be there for hours, but the time just will not move.  Eventually I pay my bill and leave.  I am wandering past shops with no idea what they sell, when I realise that one of the waitresses has run after me, calling to me.  What have I done?  Did I leave my belongings behind?  She waves my favourite pen – I have left it on the table.  It must be time to head back to the hospital before my distraction causes something more serious.

Back in the waiting area, I try to read but there is no point in turning the pages, I can’t comprehend the words of even this light novel. Every time someone walks past my head involuntarily inclines as I see if it is Dr W2, my oncologist.  Eventually I hear a voice behind me, saying my name.  He has arrived, through another entrance and has spotted me sitting waiting. Within moments he calls me into his consulting room.  My stomach twists, and I struggle to control my features.  I walk into the room.  The wait has been so long but I just don’t know if I am ready to hear what he has to say.

Physical exam first and he is concerned by bruising.  The warfarin dosage is a little high, it seems. He doesn’t notice my flamboyant toenail art. It is always a good sign when he comments on my unorthodox nails, it means he is not worried about the results.  I will him to notice the colours.  I sit down, and wait to hear what he will say. In my mind, I wonder how he will tell me bad news.  Dr W was the one who told me of my original diagnosis, and Dr W2’s style is very different. He is reading the reports, I can’t bear this.  Eventually, he tells me that the scans are mostly fine.  The mammo is BIRADs 2 which is as good as it gets for me. He is looking at something in the X-Ray but eventually says he thinks it is ok.  The ultrasound shows some cycts on my liver, but not worrisome.  He looks to the tumour marker.  It has been raised since the switch to Femara but this is a bit of a jump.  He says it is not immediately alarming, especially with the other scan and blood results, but he feels that 6 months is too long to go without reviewing.  He wants me to come back in 3 months.  I knew in my head that even if the checks were all clear then it would be unlikely that I would be sent off for a full year, as happens at the five year point, but 3 months represents something between “NED and no reason to worry” and “houston we have a problem and I am sending you for SC/bone scan/biopsy or some other procedure”.  It is a kind of halfway house.  Dr W later reviewed me from his surgeon perspective and was less worried than Dr W2 by the tumour marker. His first question is always “how long is it now?” and it was comforting to reply “five years”.  Five whole years and seven days since I had sat in his consulting room and he had told me “this is highly suspicious of cancer”.  And this seemed like the right time to give the gift I had brought for him, Dr W2 and S (the liaison manager) – all of whom have played such a role in this cancer experience.  It was particularly meaningful for me to give Dr W a copy of Dragonfruit, and showed him the words he had spoken.

It was nearly 8 pm when I finally left the hospital, tears still so close to the surface, a combination of exhaustion, emotional depletion but not tears of distress from hearing unwelcome words of worrying results.

I have said many times, that the mood when I leave the hospital after these checks is not one of elation but one of utter exhaustion.  I feel numbness and struggle not to weep.  I am not complaining, just telling it how it is, or how it is for me.  This is about as good as it can get.  If you asked me what would I really want from the checks it would be easy to answer. In an ideal, unreal world I would want to hear that there were no funny marks, cysts or wibbles for the scans to pick up.  Low tumour markers.  Healthy bloodwork which means I could come off some of these heavy medications.  And if we are being imaginative, some magical reversal of the gradual progression towards diabetes and raising cholesterol and disappearance of all of the side effects which make me awkward and lumbering.

But for now, being released back into the world for the next three months, being able to plan for the weeks ahead, and watching the Bangkok sunrise are more than enough.

It’s all in your mind

Written on Wednesday 8 October, Airport Departure Lounge, Minglardon International Airport, Yangon.  Travelling to Suvarnibhumi Airport, Bangkok.  Silently willing the upcoming monitoring oncology tests to be reassuring.

“It’ll be fine. Trust me. I know.”

Words of intended reassurance, which make me crumple. I’m sorry but actually you don’t know. I don’t know either. Yes, I know that seems odd, how can I not know what is going on inside my own body. Yet the truth is, I don’t know. Nor do the doctors until they carry out their routine, or not routine, tests. Only then will we know if it is fine or not.

The reality is that not only do we not know if it is “fine” or not (do I get a prize for the highest number of negatives in a sentence?), but we do not have control over whether it is fine or not by our attitude. I can neither keep cancer at bay by a jolly positive attitude, nor entice it by fear and anxiety. My attitude plays a part in how I live through cancer, not how the experience will play out.

The other reality is that no matter how we try to keep our conscious thoughts in rein, the subconscious can play very clever games.

This morning, I was sitting on my travel bag, trying to persuade the edges of the zip to meet before snapping the padlock shut, picking up my passport and ticket, and checking that I have my bank cards for the umpteenth time since breakfast. I had a last quick peek at the world before I disappeared offline for a few hours and was stopped in my tracks by a Facebook status update from Liz of Paw Paw Salad, one of my online BC blogging friends. She is also facing her checks (next week) and has been making Very Deliberate Efforts to Not Think About Checks. However, her subconscious had kicked in and she described a dream which could have been one of my own. She had been at the hospital in her dream ………..

The next review by my breast cancer team is coming up very soon, and I am determinedly Not Thinking About It – but my subconscious hasn’t got the memo. Had a dream last night where I was at a huge, mysterious hospital at which my (lovely, distinguished) oncologist was only going to be available to see patients for one day. I knew he was worried about me – I just didn’t know why. I then proceeded to: (a) meet with friends off the premises while waiting for my appointment, letting time stretch on until I realised it was getting dark and I was hopelessly late; (b) have a gazillion action movie adventures trying to run back to the hospital with various walls, ladders, and other impediments in my path; (c) bump into said oncologist in the corridor where he was speaking with some eminent colleagues and make a Wiggle joke about the skivvie he was wearing, thus imperilling his willingness to speak with me (!!!), and (d) realise I’d left my handbag and sandals (!) in a distant ward of the labyrinthine hospital and that I simply had to find them before my appointment. I woke without ever seeing the Prof, and feeling more wrung out than when I went to bed. Good grief.

I know these anxiety dreams so well. There is a pattern to mine and they are particularly creative around the time of upcoming checks and also before (particularly long haul) flights. Travelling to Bangkok for checks combines two anxieties for exponential bonus effect. Not difficult to interpret! Mine are not set so often in hospitals, but in airports, and also in places where I am trying to pack and depart for the airport. But all of them are labyrinthine! My checks always begin with a flight. I am writing this in the departure lounge right now. Attempting to take control, and manage those thoughts. A vain hope, but worth an attempt.

In another situation or context these dreams would be amusing and they are most definitely creative. I dream that I am packing but the case is filled with all of the wrong things – other peoples’ clothes, papers, even food shopping from the supermarket! And I am unable to find my own belongings. Or passport. Or I don’t know the time of the flight and I can’t find my ticket to check, so I do not know what time to leave for the airport. Or I just can’t quite work it out. I start from the time of the flight and subtract the necessary time to check in in advance, then take away the travel time plus a margin for traffic and delays.  And I have forgotten what time the flight was and have to start over.  And over. And over….  Once I even dreamed that I had to accompany a close friend to the dentist on the way to the airport. I became extremely agitated while she was having treatment because I should have checked in ages before and the departure time was approaching! Oh and then the airport. So many corridors, stairways and procedures to get through before check-in. I have had to climb escalators which had no solid ground at the top. I have had to sit at a coffee bar drinking coffee I don’t like, sipping slowly as it is far too hot, while the check in desk is closing within my sight. In that dream, I was not allowed to proceed to check in until my coffee had been consumed and paid for. I have had to walk miles along carpeted corridors to get to another terminal building which is not signposted and impossible to find. And the other night I dreamed I was on a Qatar Airways flight (how specific is that?) and takeoff was aborted. For some reason, I had to get out of the plane on the runway and walk back to the departure lounge. No one else did, just me. Have you ever realised how long a runway is? This one was like a dual carriage way and miles away from the airport building. Each time I wake up exhausted, stressed-yet-relieved and there is a tiny part of me which is quite impressed at the nonsense I can manufacture!

I have eventually realised that in fact, the airport in my dreams is exactly that – one entirely of my own fabrication, yet intriguingly it is familiar and consistent from dream to dream. I originally believed it was Heathrow or Bangkok but it bears no relation to the reality. It is purely my own creation. My very own virtual airport. And if I never visit it again, I will be extremely happy!

So no matter how much I try and restrain my fears and anxiety in the light of day, the brain keeps on processing and whirring and spits out the most incredibly detailed interpretations of these fears when the darkness falls.

My fears have been cranked up an unkind and steep notch in the past few days. Capt Paranoia, or cancer, has played a particularly nasty trick. On Sunday morning, I attended a very interesting session in Yangon for General Practitioners to enhance their awareness and understanding of cancers. There were a number of presentations highlighting the most common cancers and their key signs and symptoms. Breast cancer came first (this is how I have connected with the Foundation which is working in this area – more about them in another post), followed by ovarian, colorectal, lung, oral….. As a lay person, there is always the twinge of worry when you see lists of symptoms but I was shocked into a cold sweat when I saw the list of symptoms for cancer in the liver. I mentally ticked off symptoms I had not realised were connected to the liver. Last week, feeling uncomfortably full after a meal. That funny little twinge I had been feeling off and on under my right shoulder blade. Symptoms which are incredibly specific. My mind did its own “sift and search” function and spat out the suddenly remembered detail that I have nodes on my liver, noted during previous CT scans which have remained unchanged but monitored. Have these nodes developed sinister cells? Cancer in the liver. That is a whole new ball game. One I don’t want to play. I am in that limbo space now waiting for the checks. Can these symptoms be caused by other things? Or am I entering a very new and feared territory? One thing which I am thankful for, is that I already have these checks booked. There is already an upper body ultrasound booked as well as other checks. I am prepared for CT and bone scans as it has been two years since the last ones. Oh how I hate CT scans, but they do tell a full story. I don’t have a horrendous wait, not do I have to think through a “do-I-go-or-do-I-wait-and-see” decision. Wait and worry while this could be nasty. Or speak with my GP and find I am overreacting. (not that my wonderful doctor ever tells me that – he either quietly reassures me, or asks me if I have my passport in my pocket!) This could not have been timed better in fact. Routine checks that will reveal whether this is cancer reappearing or whether it is all in my mind.

When I arrived at the airport this morning, I pushed my travel bag, laptop back and handbag onto the security screening machine, and walked through the twinkling, screening frame towards the frisking security station. As I went to step onto the raised block I slipped. I didn’t go down, but just slithered momentarily. Glancing down, I realised that I have been so preoccupied that I left home in my indoor shoes, affectionately nicknamed my tsunami sandals (another long story, but I associate them with protection). Those sandals never leave home now, they are too precious and besides they are hardly appropriate formal footwear. Happily they are not quite “slippers” but still I delved into my bag and pulled out another pair for the flight. But my mind has already made its own interpretation. My slippers have come with me to look after me and remind me of other dangerous situations I have been in.

The thing about cancer is that while it is very much a physical disease, it pervades the mind in the most sinister of manners. It causes such torment and torture and brings those expressive dreams.

Only time will tell how much of this is in my mind. But all of it is ON my mind, and that is that nature of a cancer diagnosis. shadowselfie on mind

So please, don’t tell me it will be fine. Only the tests and the Doctors can do that.

After Five Years

I cannot quite imagine how this roller coaster cancer ride might have been if I had been diagnosed years earlier. Not necessarily in a world before the internet, but perhaps in a time when it was not such an integral part of life and particularly before social media became more common than chatting to your neighbour. Back in the day when having a PC in your home was the ultimate in connectivity, and when we used to store our data on those unreliable floppy discs. How life has changed.

I know that life in this post diagnosis world would have been much more difficult for me without a major online dimension, even although it is hard to imagine just how that might have looked. From the time of first fear and concern, when I entered into an unhealthy co-dependent relationship with Dr Google, through a process which saw me using information forums and connecting with others going through treatment and similar paths. From the moment I closed my eyes, held my breath and clicked “publish” on the very first post of this blog. Through a process which saw me connecting more and more with the developing online community, discussing the most personal of medical details with “strangers” on the basis of trust and solidarity, crying when new found friends were taken, venting at injustice, inequity and instances of stupidity. For me, the internet and social media have played a major part in my cancer experience. An important element of that is of course that I am in a country so far from my origins. Where the medical experience is not so different, but the wrapping is unfamiliar. Language, cultural beliefs, non-medical support and even the availability of non-Asian wigs add layers of complexity when navigating a new and frightening terrain. Of course, this is individual and the choice which has worked for me. I have close friends who have gone through this similar path and had very different levels of engagement with the online world. It is not a case of what is right or best, but which approach works for each individual.

And for me, the online world was what made the difference.

Through this online community, I have connected with (mostly) women blogging through breast cancer and as with any friendships, some resonated particularly. I remember early in 2011, being directed somehow, to a blog called After Five Years. Very quickly I became an avid follower of Lauren’s writing. As the title clearly says, this was a blog about life five years after diagnosis. When I first started reading Lauren’s work I did not realise that this would become a full year of weekly posts, exploring a plethora of aspects of breast cancer, and its fallout five years later. I loved Lauren’s exquisite writing and thought-provoking insights. I could hear a southern drawl when I read her words and she brought a wisdom and understanding of great depth, in a way that was easy to absorb. I used to wait for the “ping” on my Twitter feed on a Sunday evening on my side of the world, to tell me that Lauren’s weekly post had just been published, and I would rush on over to read it.

So much of Lauren’s work resonated – fear of recurrence, anxiety and stress through follow up scans and checks, venting over lack of understanding and sensitivity of others, the burden of a cancer diagnosis on those around us. I realised the other day that I had adopted one of Lauren’s approaches when I shared my fear that I had “toe cancer” following some sudden twinge.  This was borrowed from Lauren’s experience of “thigh cancer”. I can share a fear in a way which makes people laugh instead of adopting an embarrassed or dismissive expression if I describe my worry about “toe cancer”.

However, while a great deal did resonate, there was one Very Big Difference between Lauren and me. The clue is in the title of her blog.  While I had newly emerged from that year of treatment and was in an early recovery stage, with fuzzy clumps of cotton wool hair shouting CANCER loud and clear, Lauren was a whole five years from her diagnosis. Five years seemed so far away, in some kind of far off and safe place. I was an infant in the first weeks of Kindergarten and she was a prefect at the Big School. I could not imagine, and was frightened to think of a time so far ahead as after five years.

Yet here I am. This evening I will step over what is seen as an important line in cancer terms, into the after five years. Late in the evening of October 2 2009, Dr W gently spoke those words which were to have a greater impact than any others any in my life that I can think of. “This is highly suspicious of cancer”. Today is the day which has become my “Cancerversary” even though the official diagnosis came three days later. This was the moment I stepped through a set of swing doors into a territory I did not want to be. A set of doors which close behind you and will not let you back into the place you have left.

Early in my treatment, I remember apprehensively asking Dr W about life beyond the immediate treatment. He explained to me that once the rounds of chemo and radiation were done, and if there had been no regression, then I would be recalled every three months for follow up checks. At the checks which were timed around the anniversary time of diagnosis, there would be a more in depth monitoring which he calls the Big Check. If all is well around the two year point, I would graduate to six monthly checks. And at the five year point, again unless there is any reason for more frequent review, you are released into a world of annual checks. I remember listening avidly as he explained a life beyond the one where treatment and appointments drove every other aspect of life, and felt a quiver of hope that there was a future, a tomorrow and that one day life could be different. It felt incredibly far away, but knowing that such a time could exist provided a wonderful boost. My own path has differed a little to this, due mainly to the embolism and its accompanying bonuses.  I reverted back to 3 monthly recalls for a bit and I do not expect to be waved into the distance for a year if all is well next week. Particularly while there continue to be little extras and while the endocrinologist continues to call me back for three monthly reviews.

I have approached this five year benchmark with mixed feelings. I cannot truly breathe out and say “after five years” out loud for at least another week. Because there is an unwritten, unspoken expectation in there. After five years with no recurrence, is wrapped up in those words. And I know I cannot even think that while the appointment slip for my Big Check is sitting in an envelope with frightening words on it such as “mammogram, ultrasound of upper abdomen, chest X-ray, blood work for CEA, CA 153, (tumour markers) PT/INR (for the embolism) and a range of other tests. The appointment slip holds me in a limbo for at least seven more days, with its bold 9 October against the various tests.  I have to get through each of these, without any “flags” for follow on tests, such as bone scans or the dreaded CT scan. I have to wait, holding my breath as Drs W and W2, my surgeon and my oncologist review the scan results and I wait for the announcement that all is or is not well, that there are or are not worrisome signs which need to be investigated further. Only if, and when nothing sinister is revealed can I close my eyes, and say after five years out loud.

There is another dimension to the after five years which I really need to articulate. That relates to the widely held belief that five years represents a magic line, when you step from a world of shadow and darkness into a bright, shiny world twinkling with some kind of protective fairy dust, shaking off any fears or anxieties. That after five years means CURED. Out of the woods. Cancer free and no more need to worry. Survival to five years suggests that you can relax, as it won’t come back after that timespan. With many cancers that is the case, recurrence after five years is so unlikely that you can be considered as near as you can be to “cured”. But breast cancer is one of those sneaky, deceitful cancers that can lie dormant for years and even decades before it decides to reactivate. Around one in three of those diagnosed with an earlier stage cancer will go on to develop metastatic breast cancer. Some cancers are just wired that way while others can be eradicated by the gruelling treatment. The thing is, we don’t know which ones are programmed to destruct and which ones can be truly banished. We live with the knowledge inside us that our cancer might come back, even though we can be living with NED for years.

For me, after five years is an important milestone, not because I can skip off into cancerfree land, but because it represents a serious chunk of time. Half a decade. And half a decade, when you have heard the cancer words and stared mortality right in the face, is a wonderfully long time. Half a decade brings a perspective to living beyond diagnosis, which is impossible in the earlier days.

So if you ask me how I am going to celebrate my after five years, please understand that I am not being negative or defeatist when I say quite clearly that I don’t want to celebrate. This is not a celebration. It is, however, a time for thankfulness even before the Big Checks of next week. There is such a difference between celebration and thankfulness.

I am thankful that even though my cancer was advancing, that it had not travelled beyond the lymph nodes. I am thankful that I have access to care and treatment of the highest standard and a wonderful medical team. I am thankful that I am surrounded by support and love of family, friends and colleagues and an online community. I am thankful that despite a rocky medical road, particularly surviving a pulmonary embolism and living on a cocktail of ongoing meds, I am in reasonable health and strong enough to embark on gentle adventures and visit new places. I am thankful that my own changed perspectives and priorities have galvanised me into a changed lifestyle to achieve life goals NOW and not let these slip from view. I am inordinately thankful that I am able to continue life and work in such an inspiring and fascinating environment.

It is also a time of unexpected and intense emotion.  I was blindsided by tears before breakfast this morning.  I shed surprisingly few tears at the time of diagnosis and through treatment.  Why I crumbled this morning, I don’t quite understand but I have a game face to find before I set about an ordinary day.

Scotland 2010 171

Of course I have no idea what is ahead, no sense of whether the Big Checks will bring a new, unwanted meaning to after five years if there is anything untoward in the tests. Of course I am acutely anxious and afraid of the checks. But I do know one thing. Today I have reached my after five years and I am still here to keep telling my story.