After Five Years

I cannot quite imagine how this roller coaster cancer ride might have been if I had been diagnosed years earlier. Not necessarily in a world before the internet, but perhaps in a time when it was not such an integral part of life and particularly before social media became more common than chatting to your neighbour. Back in the day when having a PC in your home was the ultimate in connectivity, and when we used to store our data on those unreliable floppy discs. How life has changed.

I know that life in this post diagnosis world would have been much more difficult for me without a major online dimension, even although it is hard to imagine just how that might have looked. From the time of first fear and concern, when I entered into an unhealthy co-dependent relationship with Dr Google, through a process which saw me using information forums and connecting with others going through treatment and similar paths. From the moment I closed my eyes, held my breath and clicked “publish” on the very first post of this blog. Through a process which saw me connecting more and more with the developing online community, discussing the most personal of medical details with “strangers” on the basis of trust and solidarity, crying when new found friends were taken, venting at injustice, inequity and instances of stupidity. For me, the internet and social media have played a major part in my cancer experience. An important element of that is of course that I am in a country so far from my origins. Where the medical experience is not so different, but the wrapping is unfamiliar. Language, cultural beliefs, non-medical support and even the availability of non-Asian wigs add layers of complexity when navigating a new and frightening terrain. Of course, this is individual and the choice which has worked for me. I have close friends who have gone through this similar path and had very different levels of engagement with the online world. It is not a case of what is right or best, but which approach works for each individual.

And for me, the online world was what made the difference.

Through this online community, I have connected with (mostly) women blogging through breast cancer and as with any friendships, some resonated particularly. I remember early in 2011, being directed somehow, to a blog called After Five Years. Very quickly I became an avid follower of Lauren’s writing. As the title clearly says, this was a blog about life five years after diagnosis. When I first started reading Lauren’s work I did not realise that this would become a full year of weekly posts, exploring a plethora of aspects of breast cancer, and its fallout five years later. I loved Lauren’s exquisite writing and thought-provoking insights. I could hear a southern drawl when I read her words and she brought a wisdom and understanding of great depth, in a way that was easy to absorb. I used to wait for the “ping” on my Twitter feed on a Sunday evening on my side of the world, to tell me that Lauren’s weekly post had just been published, and I would rush on over to read it.

So much of Lauren’s work resonated – fear of recurrence, anxiety and stress through follow up scans and checks, venting over lack of understanding and sensitivity of others, the burden of a cancer diagnosis on those around us. I realised the other day that I had adopted one of Lauren’s approaches when I shared my fear that I had “toe cancer” following some sudden twinge.  This was borrowed from Lauren’s experience of “thigh cancer”. I can share a fear in a way which makes people laugh instead of adopting an embarrassed or dismissive expression if I describe my worry about “toe cancer”.

However, while a great deal did resonate, there was one Very Big Difference between Lauren and me. The clue is in the title of her blog.  While I had newly emerged from that year of treatment and was in an early recovery stage, with fuzzy clumps of cotton wool hair shouting CANCER loud and clear, Lauren was a whole five years from her diagnosis. Five years seemed so far away, in some kind of far off and safe place. I was an infant in the first weeks of Kindergarten and she was a prefect at the Big School. I could not imagine, and was frightened to think of a time so far ahead as after five years.

Yet here I am. This evening I will step over what is seen as an important line in cancer terms, into the after five years. Late in the evening of October 2 2009, Dr W gently spoke those words which were to have a greater impact than any others any in my life that I can think of. “This is highly suspicious of cancer”. Today is the day which has become my “Cancerversary” even though the official diagnosis came three days later. This was the moment I stepped through a set of swing doors into a territory I did not want to be. A set of doors which close behind you and will not let you back into the place you have left.

Early in my treatment, I remember apprehensively asking Dr W about life beyond the immediate treatment. He explained to me that once the rounds of chemo and radiation were done, and if there had been no regression, then I would be recalled every three months for follow up checks. At the checks which were timed around the anniversary time of diagnosis, there would be a more in depth monitoring which he calls the Big Check. If all is well around the two year point, I would graduate to six monthly checks. And at the five year point, again unless there is any reason for more frequent review, you are released into a world of annual checks. I remember listening avidly as he explained a life beyond the one where treatment and appointments drove every other aspect of life, and felt a quiver of hope that there was a future, a tomorrow and that one day life could be different. It felt incredibly far away, but knowing that such a time could exist provided a wonderful boost. My own path has differed a little to this, due mainly to the embolism and its accompanying bonuses.  I reverted back to 3 monthly recalls for a bit and I do not expect to be waved into the distance for a year if all is well next week. Particularly while there continue to be little extras and while the endocrinologist continues to call me back for three monthly reviews.

I have approached this five year benchmark with mixed feelings. I cannot truly breathe out and say “after five years” out loud for at least another week. Because there is an unwritten, unspoken expectation in there. After five years with no recurrence, is wrapped up in those words. And I know I cannot even think that while the appointment slip for my Big Check is sitting in an envelope with frightening words on it such as “mammogram, ultrasound of upper abdomen, chest X-ray, blood work for CEA, CA 153, (tumour markers) PT/INR (for the embolism) and a range of other tests. The appointment slip holds me in a limbo for at least seven more days, with its bold 9 October against the various tests.  I have to get through each of these, without any “flags” for follow on tests, such as bone scans or the dreaded CT scan. I have to wait, holding my breath as Drs W and W2, my surgeon and my oncologist review the scan results and I wait for the announcement that all is or is not well, that there are or are not worrisome signs which need to be investigated further. Only if, and when nothing sinister is revealed can I close my eyes, and say after five years out loud.

There is another dimension to the after five years which I really need to articulate. That relates to the widely held belief that five years represents a magic line, when you step from a world of shadow and darkness into a bright, shiny world twinkling with some kind of protective fairy dust, shaking off any fears or anxieties. That after five years means CURED. Out of the woods. Cancer free and no more need to worry. Survival to five years suggests that you can relax, as it won’t come back after that timespan. With many cancers that is the case, recurrence after five years is so unlikely that you can be considered as near as you can be to “cured”. But breast cancer is one of those sneaky, deceitful cancers that can lie dormant for years and even decades before it decides to reactivate. Around one in three of those diagnosed with an earlier stage cancer will go on to develop metastatic breast cancer. Some cancers are just wired that way while others can be eradicated by the gruelling treatment. The thing is, we don’t know which ones are programmed to destruct and which ones can be truly banished. We live with the knowledge inside us that our cancer might come back, even though we can be living with NED for years.

For me, after five years is an important milestone, not because I can skip off into cancerfree land, but because it represents a serious chunk of time. Half a decade. And half a decade, when you have heard the cancer words and stared mortality right in the face, is a wonderfully long time. Half a decade brings a perspective to living beyond diagnosis, which is impossible in the earlier days.

So if you ask me how I am going to celebrate my after five years, please understand that I am not being negative or defeatist when I say quite clearly that I don’t want to celebrate. This is not a celebration. It is, however, a time for thankfulness even before the Big Checks of next week. There is such a difference between celebration and thankfulness.

I am thankful that even though my cancer was advancing, that it had not travelled beyond the lymph nodes. I am thankful that I have access to care and treatment of the highest standard and a wonderful medical team. I am thankful that I am surrounded by support and love of family, friends and colleagues and an online community. I am thankful that despite a rocky medical road, particularly surviving a pulmonary embolism and living on a cocktail of ongoing meds, I am in reasonable health and strong enough to embark on gentle adventures and visit new places. I am thankful that my own changed perspectives and priorities have galvanised me into a changed lifestyle to achieve life goals NOW and not let these slip from view. I am inordinately thankful that I am able to continue life and work in such an inspiring and fascinating environment.

It is also a time of unexpected and intense emotion.  I was blindsided by tears before breakfast this morning.  I shed surprisingly few tears at the time of diagnosis and through treatment.  Why I crumbled this morning, I don’t quite understand but I have a game face to find before I set about an ordinary day.

Of course I have no idea what is ahead, no sense of whether the Big Checks will bring a new, unwanted meaning to after five years if there is anything untoward in the tests. Of course I am acutely anxious and afraid of the checks. But I do know one thing. Today I have reached my after five years and I am still here to keep telling my story.

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Aiming for boring, avoiding interesting and ending up complicated!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

On hold

One of the most infuriating things is being kept on hold, in a queue to speak to a robot on the phone which is neither able or authorised to answer your questions while you are being told you are valuable and tortured by inane muzak.  My next round of checks are approaching rapidly.  It is that dreadful nail-biting time when I find myself unable to plan beyond the checks.  Life again feels as if it is on hold and I am being restrained from moving forward, or in any direction.

I was reasonably relaxed (apart from the odd bouts of imaginary cancers) until around a month before the check.  Now I am down to counting days (19 days ok?) and the checks are at the forefront of my mind.  This time I will have an additional CT scan which is adding to my anxieties.  This is to keep an eye on a couple of marks on my liver which the CT scan showed at my Big Check in October.  Now, I am thankful that I do not have to wait for the year to pass before another scan, just in case it is anything nasty.  The doctors were not concerned about the marks, but felt it would be cautious to repeat the scan and see if the any changes.  The October scan is a baseline to measure any change against.  And of course it will be hugely reassuring – as long as it doesn’t show any nasty and unwelcome changes.  That, of course, is the big question and the one which is blocking my vision beyond the checks.  Keeping me on hold.

I am a highly skilled worrier, and my regular bouts of cancer scares increase as I approach the checks.  I am so relieved to know that I am not alone.  It is a clear case of the Breast Cancer glasses skewing everything again.  So when I read a marvellous post which conveyed the fears of one of my blogging pals,  I totally related to what she was saying.  I was completely with her in her fear that she thought she had thigh cancer.  It didn’t sound in the slightest unreasonable to me, and in fact entirely plausible.  And given that I have had a number of scares, including a nasty mosquito bite tumour scare, more than anything it reassured me that this paranoia is part of the Breast Cancer Comprehensive Package.

Indeed many of our scares can be easily explained by an innocent cause.  But there is always that chance that the sneaky cancer beast has snuck in again and Dr Google is always happy to add fuel to the fire.  There is a perennial balancing act between cautious vigilance for worrying signs or symptoms, and over reaction.

I am enormously grateful for my regular checks, I must emphasise that.  However, inherent in the checks is the fact that there is always the possibility that they reveal something sinister.  That is why they happen, after all.  And there is nothing I can do but clench my teeth and go through the range of tests and examinations required and wait patiently for the wise words of the Drs W and W2.

So I have no choice but to hold on tight for the coming couple of weeks.  And trust that after that I will not need to be kept on hold any longer.

Part 2 – Scary Thursday

The first appointment had gone well on the Tuesday, and the rest was waiting for me with most of it due to happen on scary Thursday.

This round of appointments would include 3 appointments with specialists and something with the port, as well as the visit to the lab of course to re-unite me with some needles and confront me with my aversion to them.

As always before these checks I did not sleep well.  This could be partly attributed to the inevitable anxiety, replaying all of the possible scenarios and results in my head.  It was also partly because I had made a concerted effort not to become dehydrated before my fasting blood test.  Apparently dehydration can be one cause for the CEA tumour marker to be raised. The natural consequences of this hydration strategy unsurprisingly added to the number of times I awoke in the night.

My first appointment was at 9.15 am which meant blood-letting in advance of that.  I arrived at Counter 2 just after 8 am and in no time had been processed by the blood letting counter.   As always, the veins were in hiding and the blood letting nurse had to slap them a bit to make them cooperate, and I was relieved as always when the happy plaster was on my arm to show that the procedure was complete.

My first appointment was with Dr A.  He is an endocrinologist apparently though I am going to have to Google that to be clear what it means.  I do know that he looks into my glucose levels, cholesterol, other blood stuff and blood pressure.  I also get a sneak preview of the tumour marker which is also on the bloods report and this is a big thing on my mind.  My BP was good, much lower than usual when being checked by a white coat.  I think that the Sudoku in the waiting area helped.  My cholesterol was also very good (reflecting I think, the care I am taking with what I eat).  The sugar levels were still a bit high though, and although not at diabetic level, they are still sitting consistently in what Dr A terms the “pre-diabetic” stage.  Diabetes does run in our family – my mother, maternal grandmother and great mother were all diabetic so I know that I have to work hard to keep it at bay.  The longer I can do this the better.

I tried to have a quick peek at the tumour marker result but couldn’t see it, so I asked Dr A how it was, unable to contain my nervous curiosity any longer.  It was blank. There was no result in the space against the marker tests.  Dr A checked and noted that it had definitely been requested, and said that perhaps it was not yet ready.  So my day would not have the prior knowledge of this result, and I would have no choice but to wait until I saw Dr W2 that evening to be put out of my misery.

Dr A was happy with the work I am doing to try and be as healthy as possible, but it is clear that I have more to do.  He asked me to come back in 3 months.

No surprises in this appointment, and positive messages mainly.  With that, I headed off to break my fast as I was starving!

I had a few errands to run in the intervening time, before the evening scary appointments and the hours passed fairly quickly.  Before long I was back at Counter 2 and waiting for Dr W2.  I knew he was not there yet, because it was quiet!  I soon heard his signature laughter and sure enough he rounded the corner and headed towards his room.

I was first on the list and with minutes was on the examination couch while he gave me a thorough check.  He said that Dr C had been very happy with my progress.  I replied that I no longer seemed to be cooking on a slow roast, and that led us onto a conversation about whether I was medium rare or well done!  After the examination I knew the tumour marker question would come up and I tried again to peek at the results page, but Dr W2 was holding the paper at an angle and I could not see the numbers.  Then he announced that my tumour marker was now in the normal range. What?  Really????  Are you sure?  The marker was now sitting at 3.3 – and the normal reference range is under 3.8.  The great thing about this is not just that it was normal, but that it has reduced with each 3 month check.  It was at 5.03 in August, and then went down to 4.54.  The reassurance for me, bearing in mind that the tumour markers are not a complete or fully reliable indicator, was that the markers were consistently reducing.  In my lay mind, my fear was that a marker which continued to rise would probably have a worrying cause and suggest that something nasty might be growing in my system.  So a move in the opposite direction is something I find very reassuring.

Dr W2 spent some time talking about my hormone levels and whether or not I am post menopausal.  Having ovaries is not a great thing and he wants to keep an eye on my hormonal levels and the blood counts are inconsistent.

Then we moved onto the subject of the port, which had also been on my mind for quite a while.  He said that if it was being problematic then it could probably come out but first we should try and see if it would flush.  He said that the oncology nurses are highly experienced in “cannulising” (sounded like “caramelising” ports so they may well be able to see what the problem was.  If it would not clear then I would have the port removed.  Obviously this was daunting and frightening, but I knew it was inevitable. Adding to the stress, was the fact that my flight was booked for the early afternoon, which meant that any (even minor) surgery would have to be finished my mid morning so that I could get my flight.  I asked if he thought it would be wiser to delay my return, and he laughed and said it was very easy to take the port out.  This was accompanied by a gesture which looked alarmingly like that of a noose being tightened, as he mimicked whipping out the port and catheter which is currently connected via the jugular vein into the heart!  Yeeeeeeeech!!  I said that if it was being taken out I wanted happy pills.  If I have enough then I don’t need an aeroplane to get me back to Yangon – I could fly back under my own steam!

He said the magic words – nothing indicating recurrence or spread and asked me to come back in 3 months.  Actually, he asked me when I wanted to come back – I said I had been expecting to return in 3 months and he said that was the right answer!  So l left his room clasping an appointment slip, the 3.3 and NED in my head and the terror of the port work in the morning.

I completely forgot to ask one of my important questions with all the port and marker discussion.  When is it safe to dye my hair?!  I love my chemo curls but do not like the colour and want to do something subtle to turn into a stunning red-head or at least non-grey head.  I am not sure if I can wait 3 months to know the answer so any wise words would be highly appreciated.

I headed straight round to Counter 3 and Dr W’s office.  My wait was again very short and I was called in almost immediately.  Again I had to leap up onto the examination couch so that Dr W could check out Twang Arm as well as my scars and remaining asset.  I was able to get Twang Arm a bit higher than last time, but still not good enough for Dr W.  He gave me a very thorough examination and said that he saw nothing to worry him.  I did ask him about a rash which comes and goes and seems to be worse when the weather is hot.  I was fairly sure it was a type of heat rash but do not want to ignore anything which could be an indication of something more sinister.  He said he had seen the rash and did not think it was worrying but that it would be wise to see a dermatologist.  With the limited time I have until my flight, this is something I will need to take forward in Yangon or when I am back.  He says I should get it seen to particularly if it gets any worse.  I think having radiation, surgery and shingles has left me with very sensitive skin which is too easily irritated.

He then spoke about my weight.  Despite my daily swimming and care of how I eat, I am not getting any lighter.  It is possible that Tamoxifen is not helping.  I know that to maximise my probability of keeping any recurrence at bay, I have to really look after my health and exercise and diet are critical.  Dr W was very clear.  I should try and lose 5 kg before my next appointment.  I need to crank things up another gear to try and get off this plateau.

Dr W confirmed that he wants to re-run the scans at my next check, to keep an eye on the marks on my liver and the little cyst in my right breast.  I do find this reassuring, though I know that when the time comes round I will be highly anxious about them.  For the time being though, I was happy to be sent away with my friend NED and appointment slips for April.

I walked back into the night air, highly relieved, albeit mindful of the importance of really working hard on my health and wellbeing.  Scary Thursday was nearly over and although the reports were good, the prospect of the work on the port the next morning was providing very good material for worry.  Although I was very tired, I knew that I would probably have another rather fretful night.

Check up-dates – Part One

I had my first appointment on Tuesday afternoon, so travelled to Bangkok on the mid morning flight.   It is a short flight, usually around an hour depending on whether the wind decides to help or hinder us on our way.  Just long enough to quickly down the in-flight meal and watch 20 minutes of comedy TV.

My flight was a bit late arriving in Bangkok.  Two passengers in Yangon airport had seemingly managed to get lost in duty free (really?) and were very late onto the flight.  We had to wait for them as finding and offloading their baggage would probably have taken even longer.  They got on the plane, the doors shut immediately and the plane was “pushed back” while they were making their way to their seats.

On arrival in Bangkok, there were queues much longer than usual at immigration.  Just to make things more interesting and time consuming, I managed to select the slowest moving queue.  This is a rare talent I have.  All queues are similar in length. I give a cursory sweeping look across them all and choose the one which seems to be likely to get me through quicker.  Then as it becomes apparent that I have picked the slowest moving queue by far, I dither about changing allegiance.  Until it is too late.

Finally I got through and was sanding at the desk, on my tiptoes so that the little round camera could take a picture of my face as well as the greying insta-perm.  As always, I worry that there is going to be some complication but I finally heard that wonderful, ker-chink, ker chunk sound as the immigration officer stamped my entry stamp into the passport.  Welcome to Thailand.  Phew!

On the flight I had tried to change my watch.  Thai time is 30 minutes ahead of Myanmar time.  I failed at that too.  My nails are still quite crumbly from the taxotere (yes they are I am afraid) and when I try and prise open the winder on my watch the nails split and break.  And the winder refuses to budge.  I tried again once I reached town and settled in, but again failed miserably.  I decided that I would manage to survive for a few days with my watch reading half an hour slow, and would be extra vigilant to make sure I remembered.

I clearly did not factor in chemo brain.  I was sitting, catching up on email and skype before leaving for the first hospital appointment, scheduled for 5 pm.  It was just after 4 pm so I was getting ready to leave.  A few more minutes passed while I chatted and generally “faffed”.  At 4.15 I pushed myself to get moving.  Then realised with horror, that I had already forgotten about the time difference and it was in fact 4.45!

The Cancer Hospital is not too far away but traffic diversions slowed me down and I tried to look cool as I turned up at the outpatient counter.  I apologised for being a few minutes late and was sneakily very relieved to hear that I had turned up before the Doctor had arrived!

I was soon called into Dr C’s consulting room and he welcomed me warmly, commenting on my chemo curls!  I had not been in his room more than a few moments when the door slid open.  I knew Dr W2 also consults at this hospital at the same time and although I was not due to see him until Thursday I half expected to say hello.  Sure enough, he made his characteristic grand entrance.  I greeted him warmly in Thai (I only know greetings and taxi Thai, so I hope it was a warm greeting).  His response was “I don’t know you”, followed by his signature roar of laughter.  Then he said something to Dr C and they both laughed heartily and Dr W2 disappeared, Dr C shaking his head and smiling at this guest appearance.  It is quite difficult to convey this short interlude without it sounding as if it was rude or strange, but actually it was really warming.  Dr W2’s message (and smile) clearly told me that I am no longer a frequent flyer at his chemo club.  A very good feeling, if slightly unorthodox in approach!

Then Dr C had a look at my radiation skin.  If I say so myself, I think it looks pretty healthy now and Dr C confirmed this.  He said it had healed nicely and was a “good colour”!  I am not sure what colour is good for post radiation skin, but if mine fits the criteria then I am happy.

He said there did not appear to be any troubling after effects, but was aware of the possible slight lung damage.  He said this was quite normal and it is certainly not troubling me.

After a few more minutes of small talk he said that he did not need to see me regularly as he was happy with the healing.  He suggested a follow up appointment after a year, and said that I should make the appointment for when I was coming to Bangkok for checks rather than make a special journey.  Sounds very good to me!

I had come to this particular appointment with little or no anxiety.  The examinations do not involve needles or pain usually, I was not aware of anything which could be troubling and I could see that the skin looked healthy.  I was glad that there were no surprises (of the horrible kind) and left the Hospital in a sunny frame of mind, able to crank up the anxiety levels for the next round of appointments in the Thursday.

And that is Part 2 of the update.