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.

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Spooked at Halloween

Halloween is upon us, the time for ghosts and vampires, pumpkins and dressing up.  In Scotland there are a variety of traditional Halloween activities for children.  These include “guising” (a bit like trick or treat, this involves dressing up and going round the doors, singing a song, reciting a poem or telling a joke in return for money, monkey nuts and sweets),  “dooking for apples” (ducking into a basin of water to catch an apple in your teeth) and trying to eat a treacle scone dangling from a piece of string!  Our version of the pumpkin lantern is the turnip lantern, though thanks to globalisation and greater availability of pumpkins, turnips are seen less often than the  pumpkin versions.  And it is a darn site easier to make a pumpkin lantern – have you ever tried gouging out a tough turnip!

No Halloween is complete without ghosts.  Don’t tell anyone, but my hubby is afraid of ghosts.  I mean really afraid of ghosts.  I didn’t realise just how deep a fear it was, until one evening, when our conversation turned to ghosts.  It was a bit reminiscent of childhood when you tell each other ghost stores, and terrify each other but are still compelled to recount the scariest things you have heard.  Well hubby alarmed himself so much (and most of the ghost stories were his) that he was too scared to venture into the darkness of the bedroom on his own!  I had to go in advance and turn on every light possible.  And give the room a thorough checking over for anything spooky or suspicious before he allowed himself to be led there!


I realised, when living in Nepal, that hubby is not alone is this abject fear of ghosts, or “bhoot” as they are called across large parts of the sub continent.   In villages when I was travelling I was told not to go out at night for the paths were dangerous.  I thought they were warning me because the villages were on such steep landscape, but no, it was due to the risk of being accosted by  “drunks and ghosts”!  Across India and Nepal “bhoots” are highly feared.  Wikipedia tells us that Bhoots have backward facing feet, float above the ground as the earth is sacred, they cast no shadows, and speak with a nasal twang.  They often lurk on specific trees and prefer to appear in white clothing.  Often they haunt specific houses, often places where they were killed or which have some other significance to the bhoot.

When my sister in law came to visit us in Yangon she brought her Nepali fear of ghosts with her and expressed fear at sleeping in one of the spare rooms.  She was reassured in a highly matter of fact tone by our friend who said with surprise “Ghost?  But this house doesn’t have one”.  In Myanmar, there are Nat spirits rather than the ghosts we are more familiar with, and shrines are ubiquitous.  When we first arrived, the housekeeper in our interim staff house was glad to learn that we did not eat pork. She explained that the nat which lived in that house, did not like pork and if it was eaten in the house it would cause arguments.

I am probably less afraid than hubby of ghosts, although I do get a bit “spooked” with discussions or TV programmes about ghosts, the paranormal and such “other worldly” or apparently unexplainable phenomena.  But that fear is nothing in comparison with my number one fear.  The new one which came as a gift with my diagnosis.

The fear of recurrence.

This is something I discuss regularly, for example in this “Fear Factor” post.  Halloween might mark the end of the designated Breast Cancer Awareness Month, but it does not mean an end to the fear of recurrence.  Once diagnosed, every month is Breast Cancer Awareness Month.  For those living with metastatic disease, every minute of every day means Breast Cancer Awareness.   No matter how far we are from our diagnosis, fear is not far away.

It is sometimes hard for others to understand that fear is a part of our lives. This is not about attitude or being positive, it is a reality which we manage in our lives and balance with vigilance about our health.  It is not something which we can forget as we move out of October.

We all have fears.  Whether our fear is of ghosts, spiders, heights or metastatic cancer, that fear is real and valid.  No matter the basis, we have to respect each other’s fears.

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.

Shhhhh…….

I have been rather reluctant to write this, as it smacks of tempting fate, but there is an unexpected void in my life at the moment.

I arrived in Bangkok this afternoon and the Scary Big Annual Check is only a matter of 60 hours away until it kicks off.  The Scary one with  scans, mammo, bloods, bells, whistles, oncologist, surgeon and endocrinologist lined up to make it a memorable day.

But there is something missing.

I am hunting for the “whisper” function as I key this in gingerly, stealing a glance to my  left and  to my right.  Deep breath.  He really is not here.  Captain Paranoia is not sitting on my pillow feeding suspicions into my mind through my ears as I sleep.  Nor is he on my shoulder as I go about my daily activities.  And furthermore, I haven’t consulted Dr Google, nor even felt tempted to consult him, since the appearance of the wirple just before my last round of checks.

I do have to admit to a rather sorrowful frame of mind, as I noted in the lead up to my cancerversary.  I am not sleeping well at all.  I am anxious of course, but I am not lying awake wittering about the tests, I am just not able to sleep well.

I have been wondering if Capt P is perhaps rather busy just now.  After all, there is a whole month of awareness raising to work on and his speciality is exploiting anxieties which often appear as a result.  So perhaps he is not troubling me because he is spreading himself too thinly around that his presence can’t be felt.  While I find his company highly distasteful, I hope that he is not around in my life does not mean that he is wreaking havoc in someone else’s life.

When I think about it more, I realise that it probably helps that there is not a specific worry that he can latch onto right now.  Sure I have a couple of vague niggles which I will ask Dr W2 about, but these do not merit the status of a “wirple”, that skin mark which terrified me before the July checks.  Capt P had effectively convinced me I had skin mets.  Dr Google backed him up.  They had executed well coordinated pincer movement, trapping me in my own fear.

I reckon that the Captain thrives when there is a specific sign – a dizzy spell, a lumpy bit of skin, a mark, a pain.  He leaps into action causing our minds to fire manically in all directions, alerting Dr Google to be on standby.  I imagine they have a special Twitter arrangement, following each other round and round.

But for now, whether it is because my unease is general rather thank linked to any particular concerns, or whether he is just far too busy to give me grief, I am heartily glad to have this unexpected and very welcome respite.

Tuesday will tell us whether this is another nasty trick, or whether he is weakening.

A sinister business partnership? Or a conspiracy?

As I settle back into the swing of things, I know that not far on the horizon is my next round of checks.  For now though, I am still in an upbeat frame of mind following my break and the appointments are far enough ahead not to feel imminent.  So that means that Captain Paranoia is also on a bit of a break.  Although he may not be lurking on my shoulder at the moment, I know he is causing his mischief in many other lives.

With this slight distance I am feeling more rational than can happen at other times regarding the future.  A clear indicator is a glimpse at my web browsing history.  It is immediately obvious that I have not consulted Dr Google for a while.  In fact, not since Dr W laughed at the wirple, back in early July.

This is when I spot a rather interesting connection.  There appears to be some kind of business relationship between Dr Google and Captain P.  A rather sinister one at that.  And they both appear to benefit and feed on each other in this arrangement.

Does it sound familiar?  At the first sign of an ache or pain, appearance of a strange shape or bumpy area, development of a rash or spot, Capt P appears and starts whispering (or shouting) that Houston, we have a problem.  And what do we do?  Too often we run straight to Dr Google who is waiting, grinning malevolently in his 24/7 online consulting room with far too much information, much of it ill organised and not necessarily current.  He overwhelms us with graphic images and what appears to be terrifying confirmation of our worst fears.  Our minds freeze with another round of fears and worries.

We eventually log off.  Sleep is elusive, as the information from Dr Google churns around in our minds.  Capt P takes over another shift and cranks up his efforts to maintain a wearing and ongoing onslaught on our thoughts.

In this welcome space of clarity which I find myself in just now, it is abundantly clear that if Dr Google’s online Diagnostic Service was unavailable, then Capt P would not have such a great hold over us.  Similarly, if Capt P could be kept at bay, we would not be so compelled to consult Dr Google.  The challenge is then how to try and break this cast iron partnership and weaken the power which they wield over us.

In my view, having this knowledge is in itself power.

This week’s Twitter discussion focused on Post Treatment depression and there was a very lively and open sharing of the emotional fragility we have following a cancer diagnosis.  My own view is that while depression is very much a reality for many people post diagnosis, I feel that one thing we all have in common is what I would call a post diagnosis “frame of mind”.  This reflects the fact that we live life differently after diagnosis and we are generally very vulnerable to fear and anxiety.  We are far more prone to worry about our future.  The checks and regular monitoring are massively reassuring – but only if they show nothing worrisome.

This frame of mind is a fertile ground for the sinister partnership of Dr G and the Captain.

We do have tools at our disposal to stand up to the evil duo however.  In particular, we have each other in the online breast cancer community.  We understand each other and respect the harrowing worries that we encounter.  Many a time have I had my hand held across the divide.  We also have a number of reliable sources of internet information and we should ensure that we do not consult Dr Google indiscriminately.  We should turn up at the virtual waiting rooms where we know our consultation will be fair and credible, such as the Breast Cancer sites and not that terrifying Google images search engine!

So what do we have then?  We have an evil duo who are in all likelihood working in cahoots – Dr Google and Captain Paranoia.  They are supported by an arsenal of information and detail which we cannot begin to interpret without a very smart medical head.  To counteract this we have a wide reaching and sensitive community who “get it”, and understand our fears and anxieties.  We also have our “real life” Doctors – our oncologists and our surgeons for example.  They not only know their stuff, they know us, and mostly can guide us through the minefield of distressing and baffling details dropped in front of us.  We usually only see them at our checks and they are subjected to the collection of questions which we have been saving up in anticipation of our reunion with them.  Often we are waylaid by unexpected blood results of other questions and realise in the days following our appointment that we still have unanswered questions.  And Capt P just loves to latch on to these questions and twist them around in our minds.  He refers us directly to Dr Google……..

We need to try and break this cycle, fed by the Capt P and Dr G alliance.  I know that is far easier said than done.  Dr Google is far too accessible and Capt P ensures that his visitations are as distant as possible from our real life support.  We must therefore make a concerted effort to resist Dr Google.  Capt P will then be weakened in his efforts to derail our thinking.  We have helpful guidelines, such as the 2 week rule (if a pain, ache or suspicious bump lasts for 2 weeks it needs to be taken to a Doctor).  We have our online support.  Oh, did I already mention that?  I guess that out of the sinister partnership, Capt P could possibly be credited with having a modicum of use.  He keeps us alert.  It is critical for us to be aware of our bodies and any changes that could be significant.  But to go any further than that sees him as a trouble maker who needs to be kept in his place.

I hope that this exposure of this intimidating duo can prompt us to do one thing.  To enable us to take firm control of our situations and enable us to strike a balance of being vigilant, sensitive and proactive without being obsessive.

Knowledge is indeed power.  So listen here Dr Google and Captain P – you guys are  RUMBLED!!!

The birthday present

I’m afraid it is time for another small confession.

One of the prompts for my visit to Cambodia was to continue a strange practice which started on my trans-siberian epic journey 12 years ago.  Wait a minute, how many years ago?  Impossible!  Well, however many years ago it was, it sparked the practice of spending my birthdays in Asia.  Over the past 12 years I have spent my birthdays in Nepal (several), Thailand, Mongolia, India, Sri Lanka, Myanmar and of course the one where it started – China.  I have a strange pull to spend the day in a different Asian country each year if possible.  Hence the Cambodia visit.

When I revisit my thoughts from this time last year, I realise how far I really have come.  Last year I spent a quiet and reflective day, and I can see just how much I was still wrapped up in a cancery space emotionally and physically.  I had only just started going “topless” a couple of weeks previously, braving my scalp stubble to the world, and was still suffering from the later stages of shingles.

For the first time since starting to blog, I am going to do something really radical just to highlight how far I have come indeed……..

This is a photo.  Of me.  Last year.  On my birthday.

I am becoming less precious about being anonymous, and while I do not like photos of myself (especially the ones where I have “cancer” stamped clearly on my forehead), I do feel more able to come out from behind my protective barrier.  And one big reason is that I feel able to share a picture from my birthday this year, here in Cambodia.

My day was firmly about living in the present.  None of know what is ahead and with the cancer lens in front of our eyes, fear and anxiety are never far away.  So I grasped the mettle and decided to do something I have long wanted to do and not think of the distant future and what might or might not happen.  I booked myself an “off the beaten track” trip for the day and despite torrential monsoon rain, I had an incredible day, slithering around villages and clambering over temples like an aging, bespectacled female Indiana Jones!

I still have my anxieties, and I still fear the return of cancer.  I know that won’t change and will intensify and fluctuate with scares and checks.  But for today I have discovered that I can live in the immediate, here-and-now present.  And that is the best birthday present possible.

A Confession

It is the day after the checks.

I have been a bit silent in the run up to these checks, and there is a reason for that.  I have a confession to make.

I have been doing my usual waltz with the Captain (Paranoia) and had fleeting concerns about the usual aches, twinges lumpy bits and itchy spots.  But 2 weeks ago I woke in the night with a very strange pain near my scar area.  It felt like some kind of severe sting, and rather reminiscent of shingles-like pain.  Yes, it really was painful – enough to wake me up.  I hunted around to see what was causing this, and found a slightly raised area, which was extremely tender and painful.  It felt a bit like a very nasty sting, but there were no other marks or indication that it might be a bite or sting.  Just one isolated little spot of bother.

Of course, that made me worry but not unduly.  After all, living in a tropical climate, there were likely to be all manner of weird little beasties which could cause a bite.  But it lasted for a few days, and I could feel a tiny lumpy area.  Given its proximity to my mastectomy site and scar, and the fact that it persistently stung, the worry grew and I found myself consulting Dr Google about skin mets.  Dr Google kindly provided me with a variety of images, most of which did not resemble my little “wirple” but a couple did look frighteningly similar.  So then I started searching the Breast Cancer sites for more information.  There is not a great deal of  information about skin mets, but there is a little.  And the thing that freaked me out, was that there was a consistent description of one type of met as feeling like “a grain of rice”.  And guess what?  My little wirple felt just like a small grain of rice.  Uncooked of course!

I obsessively checked the wirple and willed it to go away.  Although it did start to ease a bit in a few days, it was still very painful so I dragged it off to see Dr H.  I knew my checks were imminent, but needed to have it looked at by a real Dr and not Dr Google.

Dr H had a good old look at it.  When I mention that she had a magnifying viewer on her forehead and a searchlight that could illuminate a large village, you will get a sense of the scale of this wirple.  She had a very thorough look and examination, and found nothing conclusive.  While it didn’t scream skin mets, nor could she totally discount it being something worrying.  She of course stressed that as a General Practitioner she would not be equipped with a great deal of oncology experience.  She then brought out a reference book on skin conditions and we went through this together, looking at the various example of skin mets from breast cancer.  Most of the images did not correspond to my wirple, but as Dr H said, she was not able to discount it.  She was glad that my checks were within 10 days and the Drs W and W2 could run their weathered eyes over the wirple.

So I left the surgery, feeling mildly better (because it was not a clear “OH MY GOODNESS THIS IS VERY WORRYING” finding) but still anxious.  And anticipating a biopsy in all likelihood to check it out further.

I settled into the routine of willing the days to pass so that I could get it looked at by the specialists, and willing the days not to pass in case it was nasty.  Sleep was highly evasive and I spent many hours trying to seek out puzzles and distractions, but without great success.  It was horribly reminiscent of the time between discovering the original cancer, and being diagnosed.

The thing that was most revealing though, was my reaction in terms of sharing this.  Similarly to the situation when I first discovered the limp, I found that I did not want to worry close ones.  It is bad enough lying awake worrying about your own stuff, without imposing it on others.  So I kept quiet about it with the exception of a few people back in Yangon.  And the rationale for sharing it with these people was based on the fact that I had hardly mentioned the original lump  to others, and the result was bad.  So if I did mention it – then perhaps the result would be ok.  I was meant to be planning home leave, but found it impossible to book anything other than my return ticket to the UK, just in case I was tempting fate.

Not mentioning it to family did mean that I was not able to blog about my worries.  And that was quite a revelation to me.  I have been used to the blog’s function as an outlet, and as a way of processing what goes on in my head.  It was very hard to keep quiet about this.  The fact the the laptop decided to choose that very time to crumble probably helped as it meant that blogging time was even more limited.  It made me realise that there is a hierarchy of priorities in communicating my worries.

So that is my confession.  I have been keeping a secret about the level of worry and fear caused by this wretched wirple.  Until Today that is.  And the reason I can finally talk about it is because I am in Bangkok and had my checks yesterday.

As always it was a long day, helped enormously by the fact that my friend and I had planned and schemed to have our checks together and support each other (read cancer rebels!)  We stayed in a suitably swanky place with spectacular city view.  Well, from the 41st floor you would expect good views, along with the vertigo.  And the inability to go out on the balcony that high up!

We headed to the hospital together and re-grouped between the various tests and appointments.  After the usual bloods etc, I saw Dr W2 in the late morning.  Sitting in the waiting area, was even more painful than usual knowing that he would look at the wirple, tell me how my blood work was and generally tell me how my future was looking.  The first thing he said was that I was looking well.  I told him about the wirple and he examined it.  His verdict was a wonderful “Pah – that is nothing”!  I said that I had been terribly worried, and he said it is absolutely nothing sinister.  He noted that my tumour markers were down a bit further (now well within the normal range) and all other blood work good.  He examined me carefully and found nothing at all untoward.  I sat back down at his desk as he shared his verdict.  “No relapse”.  No Relapse is NED in disguise.  and JUST what I had wanted to hear, fearing I would not.

So by lunchtime I knew that the wirple was a nuisance and not a major problem.  I headed up to the oncology ward to get my port flushed, and after a little obstinacy even the port cooperated and produced a blood return!  I asked the nurse not to put the usual plaster over the puncture mark to avoid aanother nasty reaction and she of course obliged.  The oncology nurses are indeed angels.

There was just enough time to scoot across to do some urgent retail therapy.  I should perhaps add that the day before the tests I had pre-empted my checks by indulging in a replacement laptop.  (Which is STUNNINGLY beautiful!  Really, it is.)  So I had to get a couple of “essentials” to make sure it was feeling valued.  Then I hurtled back on the sky train in time for my appointment with Dr W, the Surgeon.  He looks at things differently to the way that Dr W2 does.  Understandably, one looks through the oncology lens and one through the surgical lens.  Dr W2 floored me briefly when I told him I was planning to travel to the UK, by asking if I would be returning for my treatment.  My stomach went into free fall, when he clarified.  He thought I was returning to the UK permanently and meant care rather than treatment.  It’s amazing how the subtle change of a word can take on a completely different nuance.

He examined me carefully too, working at Twang Arm and again saying that my arm movement was still very restricted and the cording quite bad.  I think that he is keen to have a go at Twang Arm with his surgical instruments at some point but that it does not warrant its own surgery.  Again I dressed, and sat down at his desk.  He used slight different vocabulary as he wrote his findings “No recurrence” beside some interesting depictions of my scar and arrows pointing to various bits of Twang Arm and its obstinacy.

He asked when I had had my last mammo and I said that it would be a year come October, so I was expecting the Big Check to be next.  He agreed and ordered the necessary scans.  This time I will have an extra ultrasound of my liver for a treat.  He is not sure about another CT scan considering that I had an additional one at the 6 month point, so we’ll see what Dr W2 judges to be needed.

But that is for another day, for the time being I was released into the heavy, humid air and torrential rain to re-group with my friend who had been going through her processes.  It was late in the day when we collapsed, exhausted and emotional, ready to bubble.

Bubbling had been the pre-agreed strategy.  If the checks were not good – it would be appropriate to have some bubbles.  If they were good, then bubbles would be in order.  However, there was another clear bubbling activity.  We talked about how draining the whole process is.  And the fact that while it is an enormous relief to hear that the checks have this time been kind, there is not a sense of euphoria.  There is just a massive exhaustion and overwhelming desire to weep. We had had grand plans to eat somewhere decadent but that plan rapidly evaporated particularly given the exhausting day that my friend had had.

She of course had known about my wirple.  We have this instant communication when something crops up that only a cancer exposed mind can understand.  We both had different stresses and anxieties, but it was enormously helpful to go through the checks in sync.  This is something that we were able to do here, and I know that it is not possible in most places.  However, as I have mentioned before, our medical treatment is first class on the world stage of cancer treatment, but the softer side is not really in place.  So this support has been absolutely critical.

The day looked different in more ways than one than it had by nightfall, in every sense.

When I was in the lift this morning, the doors opened and a mother and young boy got in.  The little boy had a small backpack, with a bottle of water and probably  many other essentials for his forthcoming day in Bangkok.  I was suddenly taken back to the morning after my diagnosis.  I remembered looking at the people there and feeling a terrible sense of sadness.  I knew that these people were probably either on holiday, or business.  They were probably looking forward to the day ahead.  They had no idea that I had just been delivered the most life-changing message a few hours earlier and that I was in a completely different place to where they were.  I remember the isolation and feeling of fear, uncertainty and dread over what might be ahead.   But this morning, I felt a sense of kinship.  I too was looking forward to the day ahead and I could identify with the little boy’s excitement portrayed in his features.  I found that I was again in a different place to the one I was in after diagnosis, even though I could physically see the same building where I had been.

This means that tomorrow I am travelling to the UK, and so looking forward to seeing close ones.  I will try and avoid departure lounge gymnastics and do not dread going through immigration as I did last year when bald.

I am sorry that I kept you in the dark about the wirple, but I am very happy to be giving the confession and update that I am.