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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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.

Merry-go-round!

I feel as if I have been on a merry-go-round which has been spinning me around so fast that I have been unable to get off.

The weeks leading up to this set of checks have been particularly tense, with the stress of the CT scan re-run playing high on my mind and those nodules on my liver which the Doctors want to check for signs of change or malignancy.  I remember at the Big Check in October that I was very happy to have this scan re-run after 6 months, because it would either spot something sinister early or it would reassure (and of course this is what I was holding out for) all that the marks were not worrying.  All of that is fine in theory, but the reality is that as the checks approach, you start gearing up in case it is bad news.  Better to be mentally prepared, as it is much easier to be relieved if all is well than to handle a big shock without preparation.  That is the way I prefer to go about it.  Full tilt towards panic!

As the checks approached, the Merry-go-round picked up speed and I knew that it would not slow until I got to the other side.  Well, now I am on the other side, the Merry-go-round has stopped and I have picked a path onto terra firma again.

Thursday was a difficult day, and as always started with my fasting blood tests.  My first appointment was at 8 am so I turned up at Counter 2 at 7 am so that the blood letting could begin and results be ready in time for the appointment.  My stomach was churning because I knew that the CT scan would also be on the menu shortly and that involves needles, amongst other delights.  Sure enough, I was asked to wait and I saw the nurse pick up the phone as she called the oncology ward to send one of the angels down to put in the IV line and take the blood.  She arrived a few minutes later with her picnic basket full of vials, syringes and other goodies and I was escorted into a side room to get the needle in.  Although I had fasted from midnight, I had been drinking lots of water before that to make sure I was not dehydratged.  It also has the benefit of making making the veins more prominent and in theory, easier to access.  Unfortunately despite my strategy, the veins were decidedly shy and she spent a bit of time slapping my wrists to try and get the veins to appear.  Eventually she had to resort to the one in the back of my hand.  You know that very sensitive, tender back of the hand.  Sure enough, even her gentle touch could not make it a painfree needle stick and my poor wee hand was unable to move because of the awkward placing of the needle.  However, it was in and one of the nasties was ticked off the list.

I then prepared to see Dr A, for my first appointment, but instead I was sent in another direction – towards the Imaging Centre and the dreaded CT scan.  My schedule was rearranged so that I would have that first and then see Dr A.

I had to wait until a check of my kidney function (part of the blood testing) came back to make sure that they were working well enough to withstand the rigours of the radioactive dye.  Nice thought!  All too soon I was taken through to change,  which was rather a struggle given the awkward placing of the IV line.  The CT scan process was familiar and not too scary, but of course it is still unpleasant and my blood pressure perched rather too high as an indicator of my anxiety.  The start of the process is easy, sliding into what feels like a washing machine door which the spin cycled is underway.  This time a man’s electronic voice instructed me to hold my breath, and when to breathe again.  They must have sacked the electronic woman! Then I was asked to drink several glasses of water in preparation for the radioactive dye. I was again briefed about the effects of the dye.  I would feel hot “all around my body”, and might feel sick and a bit dizzy.   I had to lie down again and the nurse prepared for the dye.  Firstly she infused saline, and asked me to tell her if it hurt.   This sensitive part of my hand seemed to house a rather sensitive vein too, as it was indeed painful.  It infused with no problem, so the siting was fine, just terribly sensitive.  I then had to lie very still and the dye was hooked up.  A recorded voice in Thai made an announcemnet and I was slid again into the circle.  It must have announced the imminent injection of the dye as I felt the infusion hurting my poor hand.  To add to the discomfort, I had to lie absolutely still – and hold my breath!  I did indeed feel very hot “all around my body” as well as the painful infusion.  Luckily it does not last too long and soon it was over.  I asked why it was painful this time and the nurse explained that the vein they used was small and the infusion is pushed fast, and over 30 seconds so it really challenges the poor little vein.  The images were checked to make sure they were clear.  They were fine  and I was very happy when they offered to remove the needle.

I was very glad that the procedure was over, and dressed in readiness for the next part of the process, the appointment with Dr A.

As I waited for my appointment, I had the regular checking of Blood Pressure, weight, temperature and height.  BP was still high and they took it twice, but it was definitely conected with the CT anxiety.  I stepped on the scales, trusting that the results of my swimming and gym activities would be reflected in the reading.  To my terrible disappointment, the scales absolutely refused to show any real reduction.  I was particularly sickened because I have worked so hard to increase my exercise consistently and am very disciplined about it, as well as being very careful about my diet. In Yangon, my weekly weighings have shown a slight decrease but only a kilo or two.  As an aside I should add that I am now swimming every day, (totalling 6 – 7 kilometres a week), going to the gym three times a week and swimming a second time after each gym visit.  I haven’t mentioned this in the blog because while I am no danger of becoming a gym bunny, I am at serious risk of becoming a gym bore!  So I did not appreciate the mean message from the scales.

I was soon called in to see Dr A.  He noted my blood pressure and checked it again.  By this time it was back down to normal so that was good.  Then, to my surprise, he said that the CT scan was through and that although Dr W had been the requesting Doctor, he said that it reported “no significant change” on the nodules on my liver.  I was elated – no change suggests not cancer.  If they had shown any growth or change, I would have needed a biopsy to find out what was going on.  It sounded as if the CT results were the very very best scenario that there could be.  I knew that Dr W would go through the results specifically with me, but having a sneak preview really made my day.

Next he went through my blood report.  Kidney and liver function pretty good, still in the pre diabetic range but a shade down from last test, and cholesterol very good.  I commented on my lack of weight loss despite all that I am doing and he said that the blood results showed very clearly that I was doing everything right.  He then drew my attention to another result, which was not usually tested.  He explained that the thyroid appeared to be pretty underactive.  He showed me a powerpoint slide of how it works so I pretended I understood it a bit more clearly than I did, because I wanted to show that I appreciated him explaining it!  Isn’t it nice when the Doctor explains things?  He said that because my level of TSH (I think) was higher than a certain level that it should be treated.  He went on to explain that I was probably feeling a number of symptoms of this – including irritated skin (oh that would be the suspected IBC which I mentioned here last week) and – weight gain!!  As in, putting on weight.  Getting heavier.  He said that this is almost certainly why I have been struggling with my weight and again said that the evidence of my life style changes were shown clearly in my blood report.  Now while I am not amused at this special “buy one get one free” offer I seem to have been given in terms of medical conditions, I do feel vindicated in being the shape I am.

So off I went, feeling a great deal lighter – metaphorically of course, considering my thyroid kilos – and was able to spend some really special time with my sister who has been around this week.  We had a good part of the day for adventures in Bangkok, and this kept my mind off the next appointments.

All too soon I was back at Counter 2, ready to see Dr W2.  Dr W’s assistant however, was at the Counter and beckoned me to follow her to Counter 3.  I am very obedient, and followed her like a well behaved puppy, as Dr W would see me first.  I only waited a few minutes when I was called in and warmly welcomed.  I am convinced I am not alone in my hero worship of my Doctors.  Dr W examined me first, checking for any lumps, swelling, signals of anything of concern and then giving Twang Arm a bit of a workout.  “Good” he said, and then returned to his desk as I made myself decent again.  He was scrolling through the CT images, clicking through the sequence of pictures slowly and then more quickly.  He seemed to go through them over and over again, paying very close attention to every image.  It scared me witless.  He was obviously looking at something very sinister and all I could do was wait until he told me what he was concerned about.  Finally, he looked up and said that he really could not see any changes or differences at all! I almost fell off my seat!  He wanted to check the images very thoroughly as well as seeing the summary report.  I told him thagt he had got me really worried and he laughed appropriately!

There was not much more for him to say, except to give hubby J a briefing on how to massage Twang Arm’s cording to try and loosen the tightness, and telling me to make sure I got the thyroid problem treated..  With a warm handshake and beaming smiles all round, our consultation was brought to an end and I headed back towards Counter 2.

Again, I had no waiting time before I was called into Dr W2’s room, and not too much anxiety by this time.  I had also seen my tumour marker and knew that it was slightly lower again so well within the normal range.  Sure enough, I had a good natured, microwave appointment with Dr W2.  He examined me thoroughly and suggested a Thai massage might redistribute some of my plentiful right side towards the vacant left side.  That is an unusual approach to the reconstruction question!!

He said he was happy with the CT results and that I just needed to come back in three months.  I asked some of my questions and he was typically relaxed in his responses, and essentially gave me carte blanche to do what I wanted, including dying my hair!

Given the very little waiting time, and having seen Dr W before Dr W2, I suddenly found myself free (after visiting the cashier of course) a lot earlier than expected.  So I headed to the 5th floor and the oncology ward to see if I could have my port flushed that evening instead of the next morning.  The oncology nurses were their usual delightful selves, and would have been happy to flush the port.  However, I had left the precious numbing Emla cream behind as I had expected the flush the following morning.  There was no Emla handy, and if I had gone back to get it and then waited for the hour for it to take effect, it would have been too late.  So reluctantly we agreed that it could be done in the morning.  I am still a terrible coward when it comes to the port cleaning – and you can see why from this picture of the special port needle!

Finally, finally I could feel the Merry-go-round slowing down and I was able to step gingerly back onto firm ground.  I cannot describe the overwhelming relief after this thorough round of checks.  The horrible uncertainty which surrounds everything before the checks is removed and it is possible to make plans and arrangements.  It is marvellous to be able to look ahead and see the path clearly.

And in that vein (no puns intended of course), we have indeed made a plan for the next few days.  In the spirit of my three guiding words for the year (harmony, vitality and adventure), we are heading on an adventure!  And that is the subject for the next blog post!

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.