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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Aiming for boring, avoiding interesting and ending up complicated!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In a scary space – the details of the past days

Pre-script/spoiler alert

As promised, here is the detail of this latest twist in the tale.  I particularly wanted to provide the previous short post, to share the news promptly that the investigative tests had been clear.  This is absolutely not intended to bring concern or suspense, but rather to document and probably moreover, process and offload, download and upload the events of this week.  Hence the “spoiler alert”.  There is no bad news in this post.

While I was waiting for the bone scan, I had two hours to wait after the radioactive dye was injected.  I sat down with my laptop and hammered away at the keys, just banging down what was going on in my head.  Looking back, it was just like being in an exam, that sense of purpose and pressure as the words flowed.  The following is what I wrote during that time.  I have tidied rather than edited, so it does come across as rather messy and lurches from big serious thoughts to the utterly trivial.  I did not want to re-work this apart from correcting errors and clarifying aspects which in hindsight might be inaccurate or unclear, because it is a snapshot of where my mind was right at that time, when I did not know.  I have added this pre-script and a post script to situate what I wrote while in that scared space.

I am sitting writing this while the radioactive dye does its preparatory work.  Ironic as I am “dying” to know what the bone scan is going to reveal.  Dying to know that I am not stage 4 and not in a inevitable process which will ultimately lead to my body dying.  And my mind, although not for as long as I can keep my hands on it.

When I am worried, I tend to retreat into myself.  Contradictorily I crave support and reassurance, but something inside me retreats and works through whatever needs to be worked through until there is at best reassurance and relief and at worst clarity on where I’m heading and what options there are.

And that is the space where I find myself right now.  Usually I don’t write about this, either on the blog to the wide (wide blogging anyway) world, but also not really to family, friends or colleagues either.  Since my original diagnosis in 2009 when I told hardly a soul, I have developed a slightly more “let’s not tempt fate” approach to follow up tests and usually share a concern or worry if I have one.

I approached the tests this time with a slight sense of complacency.  And that was thanks to the CT scan I had had in July at the time of the Pulmonary Embolism.  Dr W2 had reviewed that CT scan not just from the perspective of the clot, but also (and particularly I suspect) through his oncologist glasses.  He told me that the CT scan gave no indication that cancer was a factor in the pulmonary embolism and lung/ chest trouble.  What a huge relief that was.

And so this has been not so much in the back, but very much in the forefront of my mind.  If there was no sign of anything worrisome back in July, then surely things have a better chance of being ok through these results.  Surely.

Having the Big Annual Checks so soon after the PE episode added to this complacency for sure, although I would not be me if I was not anxious and worried about the checks.  That is the way I rock and roll.  I am the Worry Queen after all.

The checks had to span two days as the number of specialists (aka superheroes) I see increases with each extra bonus “thanks to freaking cancer” condition I collect as time wears on. So on Monday 8 October I presented myself at my second home, Counter No 2 so that the process could begin.  I had to ensure that the staff knew to take all the blood they needed for all the docs – I have a range of checks including the usual full blood counts, thyroid monitoring, glucose, kidney function, liver function, INR and clottery levels, hormone levels and of course the scary old tumour markers.  To name but a few.  A few phone calls confirmed the final count and several vials (felt like litres) of blood were syphoned off.  (And they seem to be surprised that I am mildly anaemic when I am constantly being bled?)

I then had a couple of hours before seeing Dr M, the latest addition to my A team – my cardiologist, who was enlisted at PE time.  That permitted time to run out and undertake a rapid procurement of a couple of new swimsuits.  All this daily swimming is resulting in perishing swimsuits so replacement was getting urgent.  Before very long I was back at the hospital and waiting for Dr M.

He was happy with my results, and paid particular attention to the  INR result (my blood needs to be in a specific range, knows as the therapeutic range) while I am on warfarin for PE.  The result sat comfortably in the range and he was happy with that and the reasonable stability of results since returning to Yangon.  He was very happy with liver, kidney, thyroid and the other results that he was interested.  He will review how long I will be on warfarin, but we are still talking at least 6 months.

As he turned the page for the final results (which he was also happy with), my seasoned eye sought out the tumour marker results, as I know where they are on the page, and I know the reference ranges by heart. (no pun intended, siting in a cardiologist’s office!)

The CEA was comfortably in range at 3.62, but my eye was caught by the CA marker which has a reference range from 0 – 22.  This one tends to vary a bit, although it did reach 26 once which totally freaked me out, but it tends to be late teens early twenties.  Yesterday the figure of 30.2 screamed out at me. Now of course I am no expert, and much as Captain Paranoia is instantly leaping around me, jabbing his finger at the number and generally “high-fiving” around the room, I knew that his mischief was premature.  I asked Dr M and he said that this was not his area of specialism and that Dr W2 and I should talk about this.

So that was the start of the worry kernel planted in my head.  Dr Google’s advertising campaign sprang into action and for once I ignored it. I don’t want to hear his unreliable scaremongering.  No point in adding to my sleepless night with more scary thoughts.  I know his tricks.  Unfortunately this is one of his super-busy bonus seasons with all the “awareness campaigns” so the fact that has given up on me for the time being is more likely to be an indication of how busy he is rather than a shift in my own mind!

Of course, the tumour marker nagged away at my mind all night and I did not have a good night’s sleep.  I also had my range of tests due in the morning, so was generally cranky and nervous.  I was scheduled for mammo, ultrasound of breast and upper abdomen as well as X-ray.  No CT scan thankfully, as I hate them, really hate them.  Unfortunately the instruction to fast for the ultrasound had not reached me, and I had provided my bloods the day before after fasting so was surprised to learn that I should not have had breakfast.  This prolonged the scanning timetable as I had to return later for the abdominal ultrasound.

Finally, the scans were all done, I was well and truly squished and scanned and waiting nervously outside Dr W2’s room.

Dr W2 is a hero. He was happy with the mammo, X-ray and ultrasound results and said I was looking good.  We talked about the warfarin briefly, and then I asked about the elevated tumour marker.  His words of response were:

“That is a concern I have”.

GULP!

Those are NOT the words I wanted to hear.  I wanted to hear his usual “pah”, with his reassurance that there was nothing to worry about. That is the deal – I worry, and he reassures.

Next was the physical.  This was a bit different.  More checks, different prods, including the lymph node areas.  And different questions.  Have I noticed any unusual pain?  When was I planning to return to Yangon?

I really didn’t like this change to the routine.  Alarm bells were clanging loud and clear.

After the physical I sat back down and he started to go through a plan.  He talked about the Femara switch and if that was working out ok. Then he said he wanted to re-run a CT scan.  Mainly for follow up of the embolism.  Oh the dreaded CT scans, how I hate them.  I had thought with all the scanning and monitoring of the morning that those bits were done. 

Then he hit me with “and I will send you for a bone scan”. 

A bone scan??  What The What is that about? 

I should know better, that if you ask a direct question, especially to Dr W2, you need to be able to handle the direct answer.  I don’t think I was.

Is that to do with the Femara?”  I asked, knowing that Femara is more aggressive in depleting calcium in the bones.

“No” he said.

“No, we need to see if there is any cancer in the bones.  With your type of cancer, metastasis to the bones is more common than in other cancers”.

GULP!

“ Once you have had the scans, then come right back and see me.”

I was utterly stunned.

Appointments were rapidly scheduled, and the CT planned and carried out a couple of hours later.

The bone scan cannot be done in my hospital so I have returned to Wattanoosooth Cancer Centre of Bangkok Hospital where they have the radiology facilities for the city. 

And that is where I am siting right now, after turning up this morning and being seen almost immediately.  The radioactive dye was injected gently into the back of my hand and I have been asked to return in 2 hours for the scan.  This is a living nightmare.

I knew I would need a bit of help with this.  I joke that blogging is my Xanax, but when push comes to shove and I am at my wit’s end with worry and fear, then Xanax is the only thing I can think of that will do the trick.  I had already left the consulting room yesterday, but knew I needed something to lean on so asked Dr W2’s lovely assistant if I could ask Dr W2 for some Xanax.  A strange interaction ensued as she popped her head into his room.  Yes he would give me one Xanax for the scans.  ONE XANAX???????  I need a wheelbarrow full to get me through the next few days I screamed silently.  I’ll give you a strip of ten, he said, seeing my face.  Success.  Plenty to tide me over.

But blogging or writing is still my Xanax and that is why I am sitting here right now, battering away at the keys while the radioactive dye does its work and I wait for the two hours before the scan itself starts.  I think the Xanax is probably doing its work too as I think it has taken the edge of the extreme nervousness about the procedure itself.  It hasn’t taken away the fear, though nor has it prevented my mind rattling all over the place and heading in so many directions.  I know that this scan is specifically to investigate whether or not there is any sign of bone mets.  My mind leaps from the optimism that this will be fine, that there is only one raised marker, no other signs or symptoms.  To the scenario that the cancer has metastised to my bones.  And onwards to the bonus scenario that whether or not I have bone mets, that might perhaps mean that other organs could be affected, which is even more frightening.  Perhaps there is an entirely innocent explanation to the marker.  But deep down, or not so deep down I know that markers are less reliable when report low levels rather than high levels.  A raised marker is less likely to have a benign cause than the reverse.

This takes me right back to the space I was in just over three years ago.  After Dr H had told me that I should have the “asymmetry” investigated in Bangkok.  I remember veering from “I’ll be fine, there’s no history of cancer in our family and it just can’t be” to “if this is cancer, I will not let it take me, I will fight it and win” (oh the naivety) to “this is cancer, there are too many “let’s get worried” boxes that are ticked by my presenting symptoms.  I am afraid, how long do I have?  I could be gone by Christmas”.  Oh this is all so startlingly familiar.

My head is in such a similar space just now.  Part of me is optimistic based purely n the fact that the “only” alert has come in the form of the raised tumour marker.  And hey, it is not THAT raised.  30 is not so high, it is not in the hundreds.  And it has been 26 before and gone back down.  And that was also in October.  Must be something to be with stupid Awarenss Month my friend and I “rationalised”.  Based on no rationale whatsoever.  A bigger part of me is facing the fact that there cannot be many benign reasons for the marker to be raised.  And that is where my mind keeps returning.

The thing that terrifies me, apart from facing acute treatment again, management rather than cure, no end of the treatment this time, is about my future.  I cannot see it being possible to continue working with stage 4 cancer, overseas and in humanitarian and development work.  So what on earth do I do?  We would, in all likelihood have to relocate to the UK, and after 12 years in Asia that would be a massive change, even without the prospect of investigating how to get treatment and care in place.  I would have to set up home again in the UK, and what about all the paperwork and documentation to ensure hubby J could also relocate.

It is all utterly overwhelming. What the on earth are my options, what am I going to do in every sense.

As my mind continues to hurtle in all directions, I try to stay in charge of it.  Undoubtedly this will continue, and intensify until I see Dr W2 again.  At that point I know there are likely to be a few possible scenarios

  • Bone scan is clear.  High fives. Tears.
  • Bone scan shows clear metastasis and we will be looking at diagnostic investigations to identify treatment plan. Get hubby here pronto and speak with family.
  • Bone scan clear but signs of other worrying stuff going on elsewhere in my body.  Needs more investigation.  Biopsy etc. Tensed jaw, questions, trying to remember the answers to the questions which I must not forget to ask.  Get hubby here pronto and speak with family.

How can I tell my family?  What words will I use?  How much should I forewarn them that this bombshell could be coming?  What do I do about the visitors we expect in 3 weeks time? What about all the Big Stuff going on at work, the major project just approved after two years work?  All the changes going on around us?  How can this be happening now? What about my new bike?  Can I ship it to the UK if needed?  How long will I still be able to ride the darn thing? What about my hair?  No point in booking the cut and colour I had planned.  And the birthday thing?  My mother died on her 65th birthday, and my step mother on her 75th.  Am I going to die on my 55th birthday?  How do I tell everyone if the scan results are bad?  When should I start to make a list of those to phone, those to email and start on that dreaded “bad news” blog post…….

If it is in my bones, then I am stage 4, pure and simple.  If I am stage 4 then we are talking treatment and management rather than cure.  Not beatable, but treatable.  And that is the thing.  Treatment of Stage 4 (from the little I know) is about management, finding the option which best delays or slows progression of the disease.  And that treatment just keeps on going as long as it works.  8 cycles of chemo felt like a lifetime back at diagnosis time.  But there would be no more being able to count down towards the end of chemo, this is quite literally chemo or other treatment for life.

Writing this, has helped somewhat to control my mind and organise my thoughts.  I am still overwhelmed and terrified but the two hours has almost passed as I have battered out my thoughts.  Writing and Xanax, working in harmony.

Time’s up. Now it is time, time to enter the scanning bunker and do the tests which will determine my immediate future.

Post script

I found the scan was much easier than a CT.  Perhaps that is in part thanks to the Xanax?  For half an hour I lay, swaddled in a blanket and my arms held in place by my side while the scanner moved around silently and unobtrusively around me.  I probably drifted off.  My mind was nowhere in particular.  I was in a very different zone.  I was a passenger.

After the scan, I was taken back to the changing area, but on the way the technician asked me if I wanted to take the report with me.  If so, could I wait for half an hour.  Of COURSE, I wanted the report.

I replied affirmatively, but emphasised “I will read it if I have it, perhaps my Dr would prefer to go over the results with me?”  However, I knew that I would take the report with me, and read it no matter what it said.  I HAD to know.

I returned to the changing area, which was actually a small bathroom.  I took my clothes from the locker and placed them on the side next to the sink.  As I removed the gown, I heard a brrr, brrr noise, and turned round just in time to see the automomatic soap dispenser beside the sink, happily dispensing soap onto my clothes.  I returned to the waiting area, shaking and with the remnants of liquid soap all over my blouse.

It did not seem like very long at all before the technician returned. I could feel myself struggling to keep it together as she handed me the envelope.

I repeated.  “I am going to read it”.

She said, it’s ok, you can read it and take it to Dr W2”.

Reading the words, seeing the result brought my guard down and I completely crumbled in the waiting area, weeping and clutching my reprieve.

This feels like a huge overreaction, now with the results and the reassurance.  I know that compared with so many I am hugely fortunate.  Not only did I have clear results, although the tumour markers will be monitored more frequently over the coming months, my nightmare was so much shorter than is often the case.  They might have four of the longest days of my life, but it was all done within those four days.  From the initial bloods, seeing four consultants, mammo, ultrasounds, CT scan, and review it took just over four days.  I cannot imagine the anguish that protracted investigations cause and I know I am lucky.

Of course there were no high fives in Dr W2’s office.  I know it doesn’t work like that.  More a sense of numbness, physical exhaustion and utter emotional depletion.

However, one comment on my last blog posting said it all.  “We get it”.  Yes, my results were clear, yes everything was done quickly but look at the emotional and psychological torture we go through to get there.  And there is no point at which we can say that we have absolute relief and reassurance.  Because it is only valid until the next round of tests and checks. Yes, as my blogging  friend said “we get it”.

That is my validation and reassurance of my reaction to this whole experience, and even although it has been over  only four days, it is massive and a Very Big Deal.

The retreat

I am not sure where or how to start this post.  I have been silent on Facebook, failing to Tweet and there has been no blog post for just over a week.  I am a reasonably predictable soul and silence, as I have mentioned before, is usually not an indication of a peaceful state of affairs.

It has been a very rough and very long week.  I am still processing everything and the detail will follow.  However, I would like to give at least a very short update, as my last post referred to the imminent “Big Checks” in Bangkok.  And my silence has had everything to do with these checks.

As usual, I  had the usual bloodwork, mammo, Ultrasound, physicals and questions.  My bloodwork showed some elevation in one of the tumour markers and my oncologist, Dr W2, expressed concern. My two days of checks suddenly stretched into the best part of a week, as I was sent for CT and bone scans and then review.  My mind has been in very dark places and I am physically and emotionally exhausted, as well as so tired of this whole never-ending drama.  But most of all, I am relieved. Hugely relieved. For now.

I cannot describe how I feel on receiving the results. Numb. Drained. Relieved. Highly emotional.  There is no elation, no wish or will to celebrate.  Finally I can exhale, for now, as the markers will be monitored over the coming months.  I also feel guilty, especially when I know others whose cancer has metastasized.  How I hate this disease.

Tomorrow, 13 October, has been designated as Metastatic Breast Cancer Awareness Day. Still, not enough is known about metastatic breast cancer.

Bleurgh

I awoke in the middle of the night, in a sweat, trembling and my heart racing  The details of the vivid dream refusing to recede as I struggled to reach for consciousness.  The day of the annual hospital check I had slept well, emotionally and physically exhausted.  But the following night sleep came reluctantly and when it did, it brought its own nasties, nightmares of a sky filled with planes all preparing to disgorge destruction.  In my dream I knew it was my last day on earth and the thoughts going through my mind were vivid.  In my dream sheltered inside, because I did not want to see what was coming and anticipate those last moments.  I have not had nightmares which linked closely to my experience in a conflict setting for some time.  It is over three years ago, and was rapidly overshadowed by the cancer nightmare.

Even my lay mind can see the connection between the trauma of the annual check and the extreme nightmare.

As always, I did not sleep very well the night before the checks.  I made sure to keep well hydrated prior to the fast from midnight.  As well as making it easier for bloodletting, I am convinced that dehydration contributed to raised tumour markers a year ago.

The day started early and before 7 am I was heading to the hospital, stomach churning, wondering if my landscape would be different at the end of the day.

The hospital has a pink ribbon theme and there were two large pink ribbon trees in the foyers.  A series of posters about breast cancer were on display throughout the hospital and the staff were wearing little badges.  And that is the most evidence I have seen of Breast Cancer Awareness Month.  It is a bit strange having the Big Annual Check amongst all this but it is not overwhelming.

I arrived at Counter No 2 and was greeted by Dr W2’s PA and her warm friendly smile.  A few clicks in the computer and I was waved off to the lab for blood letting.  And that answered my first question.  No CT scan today!  Phew!  For insertion of an IV line I am always directed to one of the little rooms and an oncology nurse from floor 5 with her extra gentle techniques is provided for me.  The fact I was heading to the lab meant a simple blood take.  Sure enough, 4 huge vials of blood later and a sticky plaster and the first needle stick of the day was over.   And no IV line.

I was then sent to the Imaging department.  Bleurgh.  The memories of Diagnosis Day flood back as I walk through the automatic doors and I am escorted to the changing area.  I put on the gown and return to the waiting area, my stomach churning.  Within minutes, I am called.  I am led into the X-Ray room, somewhat unexpected.  But that is fine, I am happy for an X-Ray as I have visions of my ribs and bones disintegrating thanks to surgery and radiation.  Oh, and cancer.  Just as rapidly, I am returned to the waiting area.  All too soon a technician calls my name and I follow obediently, like a biddable puppy, to the mammogram room.

Mammograms are not pleasant but nor are they too bleurgh.  While the plates are compressed to get the best possible picture, it is painful but not unbearable.  And it is soon over each time.  A few more poses, Twang Arm persuaded to stretch towards the reaches of its limits and soon I am told that the mammo is done.  Good to tick that one off.

I am then ushered into the small “ladies” waiting area to await my call to ultrasound.  And again. I am not waiting long before I am summoned.  For some reason this is the part which I find the most difficult.  Perhaps because I can see the images on the screen above me, and I can see the technician pegging contours.  And very likely because that is where I first encountered the “spaceship” shape and met Dr W.  That is where I found out there were at least 3 masses in my left breast 2 years ago. Bleurgh, bleurgh, bleurgh.

The Ultrasound technician started her procedure, carefully working her way around my chest and upper abdomen areas.  Every swimming image on the screen made my heart beat faster. I knew there had been a small cyst in my right side last year, so I was looking out for that to appear.  Nothing seemed to materialise though.  Then she moved to my abdomen area.  Little masses started appearing and soon she was pegging them and keying in letters.  I saw the word “cyst” appear.  More than once.  I asked her about the cyst in my breast and she told me that it was not easily visible this time, perhaps it had disappeared.  Cancer doesn’t disappear – does it?  I grabbed at that snippet of information and grasped it tightly.  It seemed to be ages before she finally told me that she was finished.

Relieved to be finished with the scans I sat up.  Then she burst my bubble.  She told me there was an area on my right side which was not clearly visible, and she was sending me back for more mammo images.  She wanted to see magnified images of an area on my right breast.  She also wanted my left side to be mammogrammified.  That would be a bit of a challenge.

I was led back to the mammo room and again was pulled into different directions and compressed.  I could feel the plates pinching my port but she told me not to worry about it.  It took some time to get enough flesh between the plates on my mastectomy side but eventually she seemed happy with the little she got.

Finally the scans and imagining were finished and I could return to the changing room and dress.

The physical side of this is easily tolerable.  However, the mental and emotional aspect is torturous.  All the time, my mind was going over and over the fact that there was something that they wanted to look at more closely.  I am incredibly fortunate that I get the results the same day, but even the wait of a few hours is agonising.  Bleurgh.

I am also incredibly fortunate in that I have again been able to schedule my checks at the same time as my friend.  We turn into schoolgirl cancer rebels and descend rapidly into silliness as a way of getting through the day.  Silliness verging on hysteria.  However juvenile it is though, it helps!

My next trip was to see my endocrinologist, Dr A.  Prior to my consultation I had my usual weight, blood pressure and vital signs checked.  Unsurprisingly my BP was high.  Dr A was happy that my thyroid levels are stable thanks to the thyroxine medication, happy with kidney and liver functions and delighted with my cholesterol!!  He was also happy to note a slight decrease in my blood sugar readings.  This is good news because I know I am set to follow my mother, grandmother and great grandmother towards late onset diabetes.  The longer I can keep this at bay by careful diet and exercise the better.  He was not so happy about my BP but could see that I was in a state of anxiety following the scans and preceding my appointments with onc and surgeon for the verdicts.  He was very interested in my Croc shoes and asked if they were comfortable and good for rainy season.  I told him that they were not only comfortable and waterproof but they were also quite smart and I could wear them to work.  It must be a good sign when your endocrinologist likes your shoes!! He took my BP again and noted that although it was still high, it was falling.  He saw no point in changing the dosage of meds and being happy all round with my endocrines or whatever they are, he sent me packing for 6 months.  Phew!

I had already been at the hospital around 3 hours by now, and having fasted since midnight it was time for sustenance.  My friend and I grabbed a coffee and snack and I updated her in minute detail about the scans and my worry about having been sent back for a magnified image.  She expressed surprise and alluded to my abundance of right side, saying that it surely didn’t need to be magnified.  This made us both snort with laughter and was just what I needed to hear.

Next in the timetable were our appointments with Dr W2, our shared and larger than life oncologist.  My name was called a good before the scheduled appointment time, another example of how good the patient experience is in our hospital.  They knew I would be hanging around all day so I was slotted in early.  Greatly appreciated.

Dr W2 was in his usual ebullient mood and proceeded to ask me all about the changing political landscape in my work context.  He had a good old physical examination and then he called me back to the seat.  My heart beating fast, I asked him about the scans.  He said that the imagining showed up the small cyst on my right side and the nodules on my liver which had been checked 6 months previously.  They hadn’t changed.  He was that the mammo had come up with a Birads 2 result (benign findings) and that he was not concerned about it.  My CEA tumour marker was down again and I was looking strong.  I asked him about the mark on my lower arm which I just wanted him to be aware of.  Just in case.  He pronounced it to be “age” and told me I am getting older.  This made him roar with laughter.  He loves his own jokes!

I asked him whether he has been flying commercial planes in his spare time and he loved that idea.  Then he started writing on my notes, saying out loud as he wrote “no relapse”.  No relapse – jut the words I wanted to hear.  Finally I could exhale.

I returned to the waiting area, with a grin across my face.  Even though I still had to see my surgeon, I knew the headlines and trusted there would be no nasty surprises.  Bleurgh but okay bleurgh.

Next is a trip to floor 5 and the oncology ward for port flushing.  Bleurgh  The nurses there greet me like a long lost sister and show me into one of the side rooms.  I have already applied my Emla but to be honest the abject fear which the port procedures instilled in me at one time have gone.  I don’t like the port procedure of course, but I know it is quick and easy.  There is no blood return but the nurses say that the infusion is fine and they are not concerned.  Within minutes I am holding my breath again and the long needle coes out.  That’s me flushed again.  Another task done and checked off

I settled down to a little online time while waiting for my last appointment, my attention span incapable of even engaging with Facebook.

Finally the time came for my appointment with Dr W, my other hero.  I was ushered in first which was very welcome and he greeted me warmly.   He is always very thorough in his examinations which I find very reassuring.  If there is anything at all palpable then he would be sure to find it.  He scolded Twang Arm again.  Twang Arm and I seem to have reached a kind of stalemate, a resentful co-existence.  I do have a surprise up my sleeve (;)) for Twang Arm though for some point in the future.

After the exam, I dressed and Dr W was scrolling through the many images. He is always very serious and focused as he concentrates on image after image and while I am glad that he is, I always think he is seeing something that the reports have missed.  The fact that it was him who said the cancer word to me, changing my life, makes this a nerve wracking time.  While I welcome and value his thoroughness and attention to detail, it terrifies me at the same time.

Finally he looked up though, and said that he was happy with the reports and the imaging.  Then he asked me when I wanted to come back – what about 3 months?  My lip petted as I have been anticipating the move beyond my 2 years from diagnosis and towards 6 monthly checks as a huge milestone.  I replied that I wondered if I would progress to 6 monthly checks now that I had crossed the 2 year point.  He was happy with that, as long as I keep taking the Tamoxifen.  I was planning on taking the Tamoxifen anyway, but if that was the reassurance he needed then I was more than happy to provide it.

He told me to keep on doing what I am doing and that he would see me again in six months!

So all is good.  Friend and I have been sent away clutching our envelopes with results and appointment slips for next time.

We are rather sombre but that we have made a pact.  Celebratory bubbles if all is good and commiseratory bubbles if it is not good.  I find it amusing to pick up pink bubbles.  We toast each other.

So why does it feel so weird?  No leaping about, high fiving and squealing.  I simply feel like weeping.  I have been here before, and while I would far rather be here than where I was 2 years ago, it is a strange place.  An emotional pit.

I think my nightmare reveals part of the answer. This is not the first time I have had a nightmare which takes me back to a terrifying experience I have lived through.  I have had tsunami and earthquake dreams following the checks.  This nightmare of being in an air raid is not purely from my imagination.  It opens a chapter which is usually closed, but can never be forgotten.

And I think I can understand why.  Being told you have cancer is terrifying. Being told that there is no evidence of cancer is of course an enormous relief.  However, there is an undoubted feeling that you have had a “lucky escape”. So the mind seems to flick back to another time when you are confronted with mortality.  Such as an earthquake. Or an air raid.  Previous traumatic experiences which I have lived through.  My subconscious accepts that the cancer fear has been allayed for now but it feels as if it rewinds to another point of abject fear and plays back a version in my dreams to correspond with the fear I have of recurrence.

I wonder if this is a classic sign of post traumatic stress disorder?  Irrespective of whether it is or not, it just goes to show that a cancer diagnosis is just as traumatic and vivid as a seemingly more dramatic  trauma.

I believe that this affirms the extent of a cancer diagnosis on each of us and its life changing nature.  It is indeed a huge deal. We must recognise and acknowledge the impact this has on us.

And to be honest, it’s often just bleurgh.

The Annual Hunt – in detail!

The day started really well, apart from the tiredness and inability to sleep very well, of course, but that is entirely natural.  I don’t know of any fellow breast cancer (or any cancer) folks who are not terrified when it comes to these checks.  I know I have been approaching mine with gritted teeth, with dread and fear but without any question that I was extremely grateful for the thorough checking.

I duly fasted all night in readiness for the blood letting, and was awake long before the alarm awoke.  This resulted in being at the hospital at 7.45 am, well before the first tests were due to start.  This gave me time to pose in front of the big Pink Ribbon Tree in the hospital foyer, which seemed like an appropriate way to start the day’s proceedings.

There was a lot more evidence of Breast Cancer Awareness Month than back in Yangon, and the hospital was well pinkified, yet with a focus on awareness and information.  All the staff wore little pink ribbon badges and there pink ribbon signs on doors, walls, counters and a good deal of information and details about breast cancer and screening.

I knew that my tests would take place in the imaging department, but was not sure where to go so I found myself magically at Counter No 2.  I knew the staff there would make sure I would head in the right direction and do the right thing.  Besides, it is next to the Lab and the blood letting counter so I thought that I would be packed off in that direction.  After a couple of minutes I was called and ushered into one of the side rooms, where I usually have blood pressure, weight and temperature taken.  No sign of the usual equipment which took me back a little, but I really don’t question things, I just do as I am bid.  And I was bid to lie down on the examination couch.  This was a bit unexpected and the nurse was not able to tell me why, so I just lay there under the sheet and waited patiently to see what would happen next.

I realised I had started chittering again – I was not cold but just very nervous and my teeth were rattling away.  This was so reminiscent of my scans leading to Diagnosis that I think it made me chitter even more.

Soon enough, the door opened and to my surprise, one of the oncology nurses came in with her picnic basket full of syringes, vials, tape and other goodies.  She greeted me warmly and commented on my regrowing hair!  She asked which arm she should inset the needle, and thinking this was for the blood sample, I gave my right arm (as always, considering Twang Arm is now exempt from these treats).  The needle was a bit painful going in, and she told me it had been a bit blunt – ouch! A great deal of blood was taken (three large vials, one for each Doctor) and I looked down to see if the needle was out yet, and if she was putting the tape over the puncture area.  To my surprise the needle and syringe had been replaced with a small tube, and when I looked carefully, I could see an IV line had been placed into my arm.  I have approached the tests with a vague knowledge of what the procedures would be, but had believed that it would mainly consist of scan, ultrasound and mammogram.  With the sight of the IV line I asked the oncology nurse if this was for the tests and she confirmed that this was for the CT scan.  Heart stopping moment.  There would be a scary unknown and possibly painful or uncomfortable procedure with injecting dyes and goodness knows what.  And the IV line was pretty sore. (Confirmation of me being truly a wimp).

I was then taken to the Imaging Department and had almost sat down, when a nurse came to take me to get changed into a fetching purple Imaging Gown.  As soon as I was changed I was taken straight to the mammogram room and transported instantly to the same place a year ago.

This time the procedure seemed to be a fair bit quicker, probably mainly because there is only half as much to mammo.  Twang Arm was mildly uncooperative when they were trying to get an image of the lymphatic area under my arm and refused to extend very much.  Twang Arm doesn like extension and resisted attempts, but eventually the right positioning was achieved and I was able to put my gown and glasses back on.

My chittering continued and I was told that CT scan would be next.  CT scan signified scary injecting of something into my veins and I knew it had weird reactions.  I was settled on the CT bench and my arms placed above my head and then the procedure and bill explained to me.  I was asked when I had last eaten, and if I was allergic to anything.  Then the side effects of the fluid were explained to me, and I was given instructions on holding my breath when the machine told me to. I was also asked if there was any chance I was pregnant.  I joked about the impossibility of that scenario and was asked to sign a “not pregnant” form, which I duly did.

Once those preparations had been carried out, I was slithered into the doughnut like machine a few times, holding my breath as directed and trying not to think too much about the injecting, which I knew was imminent. Soon the staff came back and I was allowed to relax my arms.  Next they approached the IV line, and explained they would put saline through first.  Then they again explained the side effects of the fluid and given a half litre of water to drink, so that my stomach was full.

Then the scary thing could be put off no longer.  They told me they would start to inject the fluid and I prepared to feel very hot all around my body (verbatim) which indeed I did!  And a bit odd.  It soon passed though and with some more breathing in and holding, more washing machine noise and movement from the CT machine, and then I was slithered out again.  I was unclipped and released from all of the wires and things and able to sit up.  The staff told me I could head to the next test, and gestured towards my shoes as an invitation to leave the CT room.  That prompted a giggle and comments that my shoes are tiny and look like children’s shoes!  True!

I was then take to the Lady’s Corner – a waiting area for women only and the nurses wrapped me up in an enormous towel as I was shivering again.  I think it is also a reaction from the fluid and they warned me to watch out for a rash, dizziness or any other sign of allergic reaction.  Then they brought me a series of cups of hot water to drink to make me feel warmer, and to help to start flushing the dye out of my system.

Before long I was called to go into the Ultrasound Room.  This was another foreboding experience, as it reminded me so much of Diagnosis Day a year ago.  I lay there waiting for the Doctor, staring at the vacant ultrasound image on the screen on the wall, knowing that I would again be drawn to what it was showing.  One the Doctor arrived, she methodically worked her way around the right side, my eyes fixed on the screen but of course I had no idea what the swirling images were telling.  Before long she homed in on a little shape and in the same way as the space was pegged last year, she pegged the dimensions of this small shape.  It was clearly not a spaceship, but it was something, my mind fixing on the report of a small cyst present last year in the right side.

Very soon after that she stood up and her assistant started wiping off the gel.  Then she explained to me that she could see a small cyst, which did not worry her but that she wanted to get more images of it by mammogram just so it could be looked at more carefully.  She mentioned that it looked as if might have been bleeding a little so she wanted to check that out.

So off I went back to the mammo room and was put through more contortions as they tried to squish me at a different angle.  This involved my feet lifting off the floor as it felt as if I was being simultaneously pulled into the machine. My port had a squishing too and before too long they had got the right pictures and I was allowed to go and put my clothes back on.

It was already approaching 10.30 by this time, and my appointment with Dr A was imminent so I headed up to his consulting area, with the IV line still in place and still pinching.

I had my weigh in, height check (no change there) and blood pressure checked and to no one’s surprise the BP was high.  Dr A called me in, and we went through the blood results.  Generally he was pleased, again.  Kidney, liver functions all good, slightly anaemic (thanks chemo), still pre-diabetic despite my careful eating, excellent cholesterol (that must be proof of the careful eating!) and all other functions normal.  It is wonderful how the body repairs and regenerates after such gruelling treatment. He checked my BP again, and it had nicely reduced which was good.  I sneaked a quick look at the tumour marker and we saw that it was very slight down from the last result.  Still a tad above normal but not higher and I was greatly relieved.

I returned to Counter 2 to see if my IV line could be removed as it was pretty uncomfortable and the longer it was kept there, the more I would worry about more IV stuff happening.  It was a fun challenge for the Nurse to remove the tape as it took all the fine post chemo re-growth with it.  Every time I though the needle was out, I realised it was just a bit more of the tape!  Finally, and with an apology for making my arm bald, the Nurse was able to remove the IV line and I was much more comfortable.  So then we were released into the outside world, to return in the evening to see Doctors W and W2 and see what the scans and bloods would reveal.

I actually felt fairly relaxed after all this.  I knew the tumour marker had not gone up again, and that although I seemed to have a cyst, it did not seem to ring alarm bells.  All very very different to the 2 October experience last year.

However, by the time I returned to the hospital for Drs W and W2 I was beginning to get pretty nervous, and was thinking of the possibilities of biopsy on the cyst, as well as unknown and unexpected surprises from the CT scan.

I settled down at Counter 2, and before long heard the familiar booming voice, which was followed by Dr W2 appearing at his door.  I was called straight in, and even before I had sat down Dr W2 announced that he had been looking at my CT scan.  That made my stomach turn over, as he is very direct and I know that the important messages come first!  He then said that everything seemed pretty normal!  Before any further discussion he said that he thought I had gained weight!  We then entered a banter which involved me saying this was not possible since I was exercising so much, and him being adamant that I was heavier and looking through my notes.  With great delight, he announced that I was in fact I kg heavier than my last visit!  Grrrr.

Having won that point, he then examined me and checked on the port and abdomen area before letting me dress and return to the seat where he had already started a discussion with Hubby J about a number of topics not related to Breast Cancer!

Then he went over the scan results, and noted that it was pretty much normal, although it showed a couple of lumpy areas on my liver which suggested follow up scans.  His take on that was that he did not see it as particularly worrying and joked that the hospital was making money out of me!!  He also said there was a small area of inflammation on the lung which might be related to radiation but again was not particularly worrying.  I mentioned the marker and he was not in the slightest interested and his conversation returned to curiosity about upcoming events rather than medical stuff!

He also asked where the previous FBG was, remembering how tired, weak and frail I had been, and I interpreted that as a great reflection on how much I have gained in strength and recovery.

He said that I should come back in 3 – 4 months for the next general check and not to forget to clean my port every 6 weeks.  Then we were back at Counter 2 saying goodbye!

Our appointments are always a bit of a whirlwind, and it is a great balance to see Dr W afterwards as it gives me a chance to ask more questions on things which occur to me after my consultation with Dr W2.  So we headed to Counter 3 and auspicious Room 59 and waited patiently for Dr W

Before long we were ushered in, and Dr W asked how I was doing.  He was pretty surprised that I was already having my Big Check, saying it did not feel like a year since my diagnosis.

He examined me thoroughly and noted some “progress” with Twang Arm.  Take that Twang Arm!  I know that I do not have full motion but slowly I am heading in the right direction.

He went through the mammo results carefully, putting the images of the cyst on the screen and talking through the report.  He said that it was not worrying, that it had the signs of some bleeding.  I told him about my fall in Dubai airport and he did think that it could be related.  He spoke the words that I needed to hear, that he saw no signs of cancer, and no need for any concern.  He said that rather than wait for a year to re-run the scans, that ultrasound should be done in 6 months and that another CT scan should also be done to look at the liver and its little lumpy shapes and check if they were changing at all.  Although ultrasound had been recommended for follow up on the liver, he felt that it would not show enough and that CT scan would be needed to really give a contrast and comparison.  He said he would see me in 3 months for the regular check, and we would do the scans 3 months after that.  And then we were free to go.

I felt much greater relief than I did after the last check.  I know that the tumour marker freaked me out last time and it helped that it had not raised further this time.  Moreover, though, I was hugely reassured by the extensive nature of the tests.  It was a real hunt for any sign whatsoever of anything suspicious, by various different tactics.  I am further reassured by the re-run of the scans in 6 months time – a year is a long time when you are anxious about invisible happenings going on in your body, so I am happy that I will have an extra check.

However, that did not mean that I felt like leaping about and squealing with excitement.  Instead, I felt drained, emotional and weepy.  But NOT worried, and that feels incredibly good, and very glad to be this side of the Big Check and a very thorough Annual Hunt.

Countdown

We arrived safely in Bangkok this afternoon, and to the delights of being back online after a few days being somewhat offline!  It’s the Big Day tomorrow.  I have to fast from midnight (I wonder if I have to wake up to fast, or if I can do it while I am sleeping!) It somehow feels like cheating to fast while sleeping!

The day will start with blood letting, as usual.  I will then be guided through the various scans and imaging tests which have been ordered for me.  In the late afternoon/evening I will meet Drs W, W2 and A for review of the various tests and see if there are any signs of ED.  Which we don’t want (ED = Evidence of Disease).  What we want is NED – No Evidence of Disease.  Please.  Smiling faces with the good news would be nice, but a bonus.

I have also realised that tomorrow is a Big Day for another reason too.  It is another of those anniversaries but a rather special one.  Tomorrow will mark a year from when I started this blog – so I guess I should call it my “Blogaversary”!

So look out for a Blogversary post tomorrow, with the updates and detail about the Big Check.