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.

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12 thoughts on “After five years…… time stands still

  1. Oh, dear Philippa…I can so relate to that phrase ‘parallel universe.’ I so wished that you got a much more ringingly good bottom line. I hate ‘wait and see.’ Great big hugs to you. We will all be waiting with you until your next visit. But, yes, you did not have to go for more scans right now. And that sunrise is utterly gorgeous. Much love to you, Kathi

    • Thank you KK, that is just how it feels, sometimes I feel la little bit like I have landed in IQ84! I will have a look up to the moons tonight 😉 Yes, it is NQNED (Not Quite NED) but nor is it SW (Something Worse). The main thing is the trend with the markers and if there are any other signs in 3 months. In the meantime, I have a life to lead and sunrises to watch. Thank you so much – love and hugs to you too, P x 🙂

  2. I too hate the wait and see…just had a six month version of that. Odd thing is, I lived a little larger in those six months…so maybe its a good thing…as if there is one in this. I am sure if they were alarmed you would be back in sooner. Love to you and again, welcome to the club!

    • Yes, lurching from checks to checks. But as you say, it is SO important to just DO those things we want to do, and I am certainly more galvanised into action. Love and hugs over to you, and thank you again for your warm support P xox

  3. oh, my dear Philippa, your poor heart and head racing with that whole day – I am so sorry you had to bear it. I can just imagine the weariness of it all, and hope you have had some good rest and happy diversions since Wednesday. we shoot for the moon, then often catch a star; I hope your star lights the way for you to enjoy that gorgeous sunrise, and have many a peaceful and contented time to comfort and reassure you. much love and oceans of big hugs to you, Karen OOxxOO

    • Karen, thank you so much for your warm wishes, and I know I have a nerve complaining when really I have a much easier time than so many, especially yourself. It is so wearisome though, and I caught myself thinking on Thursday, “you know this just doesn’t get any easier, and I think it gets harder_. But hey, there are a heap of sunrises and galaxies of stars so plenty to be very thankful for. Most of all friends like you, who give so much. P xoxox

    • Oh Catherine you know this so much more than anyone – I know that my situation is one to be thankful for, but so draining nonetheless. I feel your support very clearly, thank you so much. Thinking of you and with you too xox

  4. I can really identify with that sense of exhaustion. Hoping you have some reassuring results in 3 months time. Sending a huge hug and wishing you many, many more spectacular sunsets.

  5. Hi Philippa,
    You always write with such precision and eloquence about these things. It’s uncanny sometimes how you write about what you are going through and your feelings about whatever it is, and I realize I am feeling many of the same things you are. I am sending you big hugs my friend. xx

  6. Hi Philippa,
    I read your post last night and couldn’t stop thinking about it. I’m so very sorry that you had to suffer through such a ghastly day and the weeks leading up to it. I realize that you’re still in a sort of limbo, though there is certainly comfort to be taken that no immediate tests have been ordered. All I can do is wish you peace. Enjoy each day as it comes and love everyone and everything in your life — and hopefully all will be as you wish it to be… I’m in Hong Kong for the Dragonfruit launch. Wish you were here!! India xoxo

  7. Pingback: The Waiting Room | Feisty Blue Gecko - a tail of the unexpected

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