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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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.