Spooked at Halloween

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

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

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

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

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

The fear of recurrence.

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

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

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

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Happy Blogaversary dear gecko

It’s a Happy Landmark Day today and what’s more, I’m in some great company as at least two blogging friends (Bringing up Goliath and In the land of new normal) have been marking “blogaversaries” in the past few days!

Two years ago, after weeks of lying awake at night, dark thoughts and questions swirling around in my head, I took the step of starting this blog.  It was important to keep people updated with what was happening, but the key thing for me was to process what was happening to me and the blog was a critical outlet.  Like many of my blogging friends, I have now found that this is an important part of my life, particularly in relation to my breast cancer experience.  I have gained an incredible amount through this blog, especially some close and special friendships.

I realise that in the past months, there are a number of characters and expressions which I have adopted and coined which have become almost like characters in the blog.  They have become part of my life since The Day That Everything Changed.   So I thought that a nice way of marking my blogaversary would be to put together a kind of cast list come glossary to fill out the details. I realise that I refer glibly to good old Twang Arm and back to the Groundhog Days.  So this will be a kind of Gecko Glossary.  And if we are honest, it is actually as much to remind and entertain me too!!  Looking back it is interesting to see what has taken on a firm place in my life and what has faded into oblivion and insignificance.

Throughout my blog, and in line with the approach I took with the original Feisty Blue Gecko blog, I use initials for family and friends in order to protect privacy.  This includes my Doctors, and I have to start with them as they are the heroes who have guided me through this.

Doctor Y

I started on this path with a consultation with my Dr in Yangon, Dr Y, who referred me to Bangkok and has tirelessly looked after me since then.  Through some very dark days and unpleasant procedures it has to be said.  She told me once that I never walk into the surgery with something trivial (I have walked into her surgery with pneumonia, shingles – oh, and cancer!)  I am threatening to come in with a severe dose of hypochondria!

Dr W

On arrival in Bangkok, I met Dr W and later his colleague Dr S, my wonderful surgeons, great experts in the field of breast cancer.  Dr W consults on Tuesdays and Thursdays but when he received the referral stating that I was arriving in Bangkok on the Friday evening, he arranged to come in that evening to review the results of the mammogram and ultrasound.  He was the one who showed me the spaceship and changed my life with his gentle but irrevocable words, “this is highly suspicious of cancer”.  He offered to operate the next morning along with Dr S.  They both looked after me during those first weeks and I bear the marks of their expert craftsmanship.  I still see Dr W every three months and I think we are both surprised how far I have come since that first day.

Dr W2

Once I received the pathology results from Dr W, he introduced me to Dr W2, my oncologist.  Dr W2 bounced into the consulting room with one of the grandest and loudest entrances I had ever experienced.  He continues to display his personality which is far greater than his stature, with his honest and direct approach.  He has led me through my treatment plan and also continues to monitor how I am doing with his wit and warmth an integral part to his consultations.

The Oncology Angels

I first met the oncology nurses of Floor 5 when I was wheeled along for Chemo 1.  From that day forward I have been cared for and treated with the highest level imaginable of professional and warmth.  These angels were able to take blood from my veins when I was dithering with fear, wired me and my port up and administered the whole chemo and more recently cleaning procedures, in the most comfortable way possible.  I hero worship these women, they were at the cutting edge of the treatment and I have been a very nervous patient.

The Spaceship

I will never forget the strange shape which Dr W showed me on his large screen.  It looked like a spaceship.  It was a cigar shape, and from the main body there were four strange shapes growing outwards, each one a bit like a cloud shape on a thick stalk.  The fact it was irregular and growing in different directions was a very strong indicator that this was malignant.  The spaceship was ceremoniously removed and analysed but not before it had made a takeover bid and lodged in 6 of my lymph nodes.  The Spaceship has gone, but I am living with its results every day.

Twang Arm

Twang Arm was an unexpected arrival.  I had expected great discomfort from the after effects of the mastectomy.  I had not expected to experience numbness, pain and a limit on movement in my left arm as a result of the lymph node removal.  I had not expected to have a set of tightly pulled guitar strings running from under my arm to my finger tips.  I had not expected a strange interconnected set of pains, numbness and sensations in places far away from my arm (my cheek and ankle for example) as a result of nerve damage.    However, that is what I got.  Twang Arm took up residence from the day of my surgery and has been an unwelcome guest since then.  We have entered a long term engagement.  I would stress that this is an engagement between adversaries in conflict rather than preparation for a long and happy marriage!  Despite regular exercises and my swimming obsession Twang Arm is still making its presence felt.  However, if I look back I have to see that its place in my life is less significant and certainly less painful and uncomfortable.  I have a much better range of motion, I have much more strength and the strange numbness is only in an area very local to the surgery site instead of being in satellite locations all around my body.   Twang Arm almost has the last laugh though – it is exempt from blood tests, injections and even blood pressure testing while poor old other arm has to take all the bashing and pricking in its place.

The Groundhog days

Early on after my first cycles of chemotherapy, I realised that the first days after each cycle were Groundhog days, just like the film.  I would wake up in the morning, for a second would be in ignorant bliss.  Then the side effects would catch up on me and I would realise that I had yet another day in front of me, which would be just like the previous days.  I found that I had around 5 Groundhog Days after each chemo cycle.  When I asked for a cup of tea family recognised this as the signal which showed I was starting to see through the groundhog fog and see a bit more clearly.

The Triathlon from Hell

While I was undergoing chemo, I read a description of cancer treatment as a Triathlon From Hell.  Wow did that strike a chord!.   It was indeed a triathlon and it was in many ways an experience from hell.  The first event was surgery, and it was followed by the chemo event.  Graduation from chemo led to the third radiation event.  It pushed me to the limits of endurance.  But I got through the Triathlon, I was able to move through each event and now it is well behind me. I do not rest on any laurels however, I have no idea if I will have to go through another series in the event of the cancer beast making a come-back.  I am also too keenly aware that for many the triathlon is a way of life.

Rocky and Rocky 2

If the three phases of treatment were a triathlon, then I felt that 8 cycles of chemo over 6 months represented a Boxing Match!  This was a Boxing Match with 2 massively unequal opponents.

Dr Evil

One of the most difficult days I faced, and one which I found disproportionately upsetting, was the day I met Dr Evil.  I met him in the mirror.  Three weeks after the first chemo my hair was falling out in handfuls, and I could no longer put off the inevitable.  I went to the hairdresser and any notions that I would look kind of cute, like Sigourney Weaver were blasted into oblivion by the appearance of Dr Evil (from the Austi Powers films) in the mirror.  I never quite got used to seeing him and never ever welcomed him.

Grizzly

I had a hilarious time (well with hindsight it is amusing, it was not so funny at the time) trying to get a wig in Bangkok.  Options were very limited, most were for Asian colouring and made me look like a Goth, and wigs are feel like a bit carpet on your head.  My wig was quickly christened Grizzy because I felt like a scruffy bear in my wig.  I ended up hardly wearing the rug and was much happier with scarves!

Pinnochio Legs

One of the side effects of Taxotere was a kind of leaden leg effect.  My legs were unbelievably heavy and very weak.  They felt wooden and as the cycles progressed they became quite unbiddable and awkward.  It took a few weeks for them to get some semblance of biddability back.

Barbie toes

One of the delights of Tamoxifen is the sudden onset of excruciating cramps.  These come on unpredictably and force my feet and legs into very strange distorted shapes.  My toes head in different directions and look as if they are on artificial tippie-toes, just like Barbie dolls.  Ouch!

Captain Paranoia

I am not quite sure when Captain Paranoia made his first appearance.  Rather he kind of sneakily moved into my life, and before I knew it he had taken up residence.  He is not exclusive to me though, I know he causes his mischief all over the place, convincing us that we have the most worrying signs of recurrence.  He tends particularly to enjoy the period before checks and works in partnership with Dr Google.

Dr Google

No matter how hard I try, I am too often tempted to consult Dr Google.  The problem is that he is too easily available and loves to respond to questions like “I have a funny mark on my heel, is it cancer?” with “ooh more than likely it is heel cancer”, and he produces pictures for added hysteria.  We know that we should not consult him, we know that he is unregulated and unethical, but we are still tempted.  Interestingly, the more Captain Paranoia leaves me alone, the less likely I am to be tempted to approach Dr Google.

Chemo treats

Just before my first chemo, my friend J suggested that I get myself a treat after each cycle.  That was a brilliant suggestion, and one which I took away and developed further.  The chemo treat system became an integral component of the chemo cycle.  Planning my treat was something which occupied my mind before and immediately after each chemo.  I found that I developed an unwritten set of “guidelines” for the treats.  It had to be something which I would keep, and not a perishable like chocolate or a sweet.  It was usually something which I could use frequently, and something which would motivate me to do things which I would bth enjoy and which were good for me.  Chemo treats included a new swim suit, art materials and the famous I pod library disaster!  Interestingly I still love my swim suit (chemo treat 4) yet the Jamie Cullum jazz (chemo treat 6) I still cannot listen to as it transports me right back to the chemo days!

So it has been quite a busy couple of years with all this going on!

Throughout this blogging experience, I continue to be humbled and truly touched by the number of warm friendships I have developed, by the amount I have learned and by the level of feisty debate.  I will never ever be thankful for cancer for picking me, but I have many other side benefits which I truly value.

Cancer truly sucks.  But Blogging ROCKS!!

Happy Birthday Blog!

The Chemoversary

Today marks another Landmark Day.  A Big Landmark Day in fact, almost as big as the Cancerversary.  Two years ago today marked the start of 8 cycles, and five months of life dominated by chemotherapy.

From the time I knew that I might have cancer, the biggest fear I had apart from the obvious “oh-my-God-I-am-going-to-be-dead-by-Christmas” fear was about having chemo.

I knew very little about cancer and even less about chemo.  I knew chemo equated with baldness and I knew it made you very sick.  I had no knowledge about how chemo fought cancer nor whether it was successful.  I only knew I was terrified of it.

When I was diagnosed, I asked Dr W abut chemo.  He told me that there had been great advances in chemo and that as well as refinements in the chemo drugs themselves, the side effects could be well managed with different medications.  Furthermore, I had read somewhere (in other words, somewhere on the internet) that not everyone lost their hair during chemo.  Being rather good at denial I latched onto these points and decided that I would not be hugely affected by chemo and that I would one of the lucky ones and not lose my hair.  I am not sure that it is possible to focus on denial from a point of logic, but in effect, that is what I did!

However, that did not keep the terror at bay.  I approached chemo with abject fear and dread.  I was already in hospital following surgery for port insertion, Twang Arm fiddling and Blood Pressure complications and Dr W2 was keen to get the chemo underway without delay.  The day of Chemo 1 was 23 October – exactly a month from the day I discovered the lump in the first place.

This is my account of the first chemo from the early days of the blog….

23 October

I was so scared but I knew that it had to be done and I was wheeled off without protesting to the oncology room on the same floor.

I think it’s fair to say that I was afraid of everything. I was frightened of the chemotherapy process.   I was frightened of using the port. I was frightened of adverse reactions to the chemotherapy medications. And of course I was frightened of the side-effects.

But the staff were lovely. They were totally professional and very calm as they prepared me. I jumped though as they pressed the port area, it was so tender. I had no idea how they would insert the needle into the area. They called the surgeon to have a quick look and see if it was possible to use it so soon after it had been inserted. The surgeon felt that the area was too tender, and that for the first time the chemo should be administered intravenously. I have to confess that I was actually relieved by that.

A vein was quickly identified, and an intravenous line was inserted. Phew!  The nurse sat with me, next to her shiny trolley full of potions and syringes, and went through the process with me.  First they would run saline through to make sure that the IV was working and give some time for me to settle.

Then she worked her way through a set of different sized syringes, all of which contained medications to counteract the side effects of the chemo.  One of these in particular had a really strange side-effect of its own.  The nurse explained to me that I would have an itching sensation for a few moments – she wasn’t joking. It felt as if I had been invaded by an army of marching, biting red ants and I wasn’t sure whether to wriggle, giggle or blush.  I think I ended up doing all three to the amusement of the nurses. Next came more saline to make sure these meds were all washed through and then began the preparations for the first chemo dose. I knew that I would have two different types of chemo medications, each chosen according to the specific characteristics of my spaceship tumour.  At this point the nurse gave me an information sheet which described in detail the medication which I was to get,  its likely side-effects, it is purpose and rather gruesomely the fact that it was a bright red colour. Marvellous! As if having chemotherapy isn’t already something which feels very toxic – the red colour suggests danger as well as toxicity.  One of the side effects of this one was the fact that it will turn your urine pink!  Is this some kind of branding approach?  Pink ribbon, pink urine?

The bright red fluid was duly hooked up to the IV line and a mechanical, pumping noise ensured I knew it was being fed into my bloodstream.  The rhythmic noise felt like a whispering chant to destroy any cancer cells, I guess it was my way of handling it.

After half an hour or so, a beeping told us that the red med was finishing and the nurse fed the last of it through before hooking up more saline.

She then sat with me and went through the next information sheet about the second chemo med.  Similar side effects – hair loss, vomiting, nausea, suppressed immune system.  Great, bring it on and let’s keep moving forward because there’s no way back!

The second chemo medication was clear and innocent looking, but just as toxic, though without the pink pee after effect apparently.

The whole process took around two hours and I found it impossible to concentrate on anything except what was happening to me.  I could not listen to music or watch TV or read the book which I had brought. All I could do was lie and listen and wait until it was finished.

Finally after listening to the pumping of the medication systematically going through my veins the second chemo was also finished and the whole procedure came to an end with a final rinse of saline and removal of the IV line as well as advice about which foods to eat and avoid.

I was taken back to the ward feeling rather stunned. My head felt strange, something I can only describe as kind of buzzy. I felt disengaged from the reality round about me. Most of all I felt an enormous relief that this first dreaded treatment was finished and that I had got through it.

I was then discharged, my second hospital identity bracelet was snipped from my wrists. Again I was given a bagful of medicines, an appointment sheet for Dr W2 and I signed some forms, collected some cold packs and again found myself in the night air and returning to our studio apartment.

This time in my little bag of medicines there were some very important drugs – the side effect management drugs which would see me through the coming days, the ones which would become affectionately known as the Groundhog days.

***********

 

That was the start of life being dominated by chemo, living life in 3 week increments around the chemo cycles, avoiding infection, trying to eat carefully and nutritiously (in fact just trying to eat), monitoring temperature and other health signs, commuting between Bangkok and Yangon with mask and often wheelchair.  It was long and arduous, but it did not last for ever, even though it felt as if it would at the time.  Looking back, I realise how little I knew of recurrence and metastasis and was focused on getting through the cycles set in front of me.

It is hard to believe that a whole 2 years has passed since that day.  Living with NED is a precarious blessing – one which I value and appreciate daily.

Belts, braces and Bangkok

Last week as I braced for my annual checks, Bangkok began bracing for floods.  I was almost totally oblivious to this while the hospital stuff was happening.

Once I emerged from the surreal world of the checks, I realised that I was surrounded by sandbags and walls were being constructed all around.

In the street where we stay, a few minutes walk from the hospital, residents were having (I assume temporary) walls built in front of their gates to protect their properties from rising water.

I was rather relieved to buckle my seat belt on Saturday and fly back to Yangon.

However, the flood situation is worsening, and central Bangkok still bracing. My thoughts are with those affected.

Bleurgh

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stormy skies

I love sky watching.  I marvel at cloud formations and am spellbound watching them roll across the skyline, contrasting against gentle innocent pale clouds.   We have no shortage of clouds with attitude during the rainy season, yet I do not tire of watching each new formation.

However, while stormcloud watching from the comfort of the ground is a great pastime, preparing to fly in this kind of sky is a different matter.  Rainy season should be coming to an end, but those clouds keep on rolling in and the rain keeps on falling.  So much so that Bangkok is on flood alert.  So flying to Yangon to Bangkok might be a short flight, but it sure can be adventurous in this season.

Travelling here on Saturday, we were delayed leaving Yangon, for nearly an hour.  When we finally departed our plane was buffeted by angry clouds as we ascended.  The seat belt lights stayed illuminated just to forewarn that our flight would be turbulent.

It was therefore, reassuring to finally hear the pilot’s steady voice on the intercom as he made his first in-flight announcement.  As usual this was in Thai, but I can pick out enough words to know that it was not a scary message.  I am good at picking up important clues such as altitude, temperature, flight path, estimated arrival time and arrival airport.  So I was able to relax by the time the announcement started in English.  Imagine my reaction to hear “Good afternoon ladies and gentlemen, this is Capt W……….”  Yes, his name was the same as my oncologist Dr W2!  There are a number of names which I see fairly frequently in Thailand.  Especially those, ironically with the suffix -porn (Pitiporn, Pukkaporn and the truly amazing Supaporn!)  However, I have yet to see anyone with the same name as Dr W2.  Conclusion?  Either they are brothers or my Dr W2 must be a pilot in his spare time!  At the very least,  I can take comfort in the fact that Dr W2 holds my health in his hands and Capt W2 holds my airborne safety in his hands.  I am indebted!

Now safely in Bangkok, the skies are stormy here too and we have frequent torrential downpours.  Bangkok is bracing for floods.  I am bracing for my encounter with Dr W2 as well as the gamut of tests, procedures appointments and scans.

And the October sky takes on a pink hue as the sun sets on the eve of the Scary Big Annual Check.

Shhhhh…….

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

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

But there is something missing.

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

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

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

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

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

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

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

Profit and loss – Cancerversary reflections

Last Friday was a fairly ordinary day.  I woke before the alarm, looked out of the window and was pleased to see that the dusky daybreak sky had only a few clouds.  That meant that my dawn swim was possible, always guaranteed to give me the best start to the day.

So why, in the mid morning did I become aware of a sense of gloom?  I was aware of a blanket of sadness slowly wrapping itself around me.  I could feel unprompted tears, behind my eyes as they became watery at various points throughout the day.  The only reason I can think of is that I am a bit overwhelmed by the immediacy of my landmark days, especially what I can’t help thinking of as the Big Cancerversary, followed rapidly by the anniversary of my major surgery.  This is probably not helped by the fact that this comes at the beginning of October and the internet, particularly Facebook and the blogosphere have dizzying numbers of messages, promotions and snarky posts swirling around.

It is 2 years ago today from hearing Dr W tell me “this is highly suspicious of cancer”.  It is 2 years since the world as I knew it shifted irreversibly.  October 2 is the day I mark as my “cancerversary” because it is the day I started to live life through the Breast Cancer lens. I have noted the irony previously or being diagnosed at the start of October which is a sure-fire way of raising awareness in one’s immediate surrounds.  And self.

This deep sadness is mixed with a feeling of ingratitude and guilt.  Why am I not more appreciative?  I am still alive, 2 years after hearing the earth shattering words.  I am presently, until the Big Check next month, living with NED.  Apart from the usual concerns I do not have a specific reason to believe that the cancer beast is back.  So why am I not more upbeat and chirpy?  And to be honest, I really don’t know.

Last year I approached my first anniversary season without this sadness.  And of course it was such a big milestone, one I had truly believed I would not reach and which had seemed so distant in the thick of treatment.  I wrote a cathartic “letter to cancer” as part of the process.  I had a quiet and reflective day.  and blogged about it all of course.

I thought about writing another letter this year, but that didn’t feel quite right, or really what I wanted to do.  Part of me doesn’t want to give cancer the added attention, even though it has plenty of my attention. And to be honest I don’t really have anything new to say.  And cancer certainly has nothing new to say to me.

What does come to my mind though, is just how much I have lost and how much I have gained because of cancer.  I am afraid I have no gratitude to cancer for making me a “better person”, or more appreciative of the good things.  I think I have always appreciated the good things to be fair.  I have always been a carpe diem kind of girl.  If someone presented me with a remote control and said I could re-wind to my life before cancer, I can’t think of anything I would truly have done differently.  But now I find I have a deep sadness related to my diagnosis which is just kind of there.

This lack of appreciation, however, does not mean I am not thankful for some pretty wonderful gains.  The fact that family had literally dropped everything to cross the planet and be with me, bringing the most thoughtful things which I could not get in Thailand and which I didn’t even know I might need always brings a wobble to my lower lip.

I have also “met” a host of incredible people through purely because of cancer.  This has been through blogs, facebook and a small number of “real life” women too who have been diagnosed and treated in my neck of the woods.  These have developed into close friendships and invaluable support.  That would simply not have happened without the diagnosis and my life is enriched through knowing them.  I have been blown away the warmth, humour, attitude and smartness of my new ”thanks to cancer” friends.

I have also learned a whole heap of stuff, particularly about cancer and the real nature of the beast.  I had really lived in ignorance and understood very little about it.  I have also particularly learned about the reality of metastasis and that it can happen even when cancer has been detected at an early stage.

On another vein, I am probably at my fittest for longer than I care to remember (although I certainly do not look like it, ironically) thanks to daily exercise.  I make no secret that this discipline is related to my taking control of the few factors which are in our hands relating to recurrence.  Gym or recurrence?  Not a lot of choice really!  Not that I take it as any guarantee, but I do know that if the day comes when mets are found, I can put my hand on m heart and say that I have done what is in my hands to reduce risk.

I am more proactive in trying to have a more healthy work life balance.  I protect my leisure and creative time.

Another thing which I have gained in a sense, is a lessening of anxiety and fear of hospital procedures.  (Is a reduction of something a gain?  When it is a good thing then I guess it is.)  I will never be fearless when it comes to needles, scans and surgery but they are less daunting these days.

So I have truly gained a great deal.

That is what I must seek to balance against the losses.  I have also lost a fair amount.

In the immediate and tangible, I have lost one breast.  That is the most striking, daily ever present loss, and one which I feel physically, emotionally and practically.

I have lost movement in my left arm thanks to cording, evident in the existence of Twang Arm.  My range of motion is quite limited and although we have a level of fairly peaceful co-existence, it is painful and uncomfortable as well as less than fully functional.

Connected with this, I have lost the ability to do some very basic, taken-for-granted activities, like shopping.  I am no longer able to easily wear various styles of clothes.  Tops which go on over my head are too much trouble and discomfort.  Tight sleeves are out.  It is amazing how much that restricts what is available.  And I don’t even need to start about trying to get suitable, comfortable bras especially at a price which does not mean selling all worldly goods!

Perhaps more striking however, are the intangible losses.  Being very weak during chemo when travelling between Yangon and Bangkok for treatments stripped me of my independence and confidence to do things which had been a regular part of life.  It hit me hard that I could not easily travel independently, as well as many other activities.

Connected with this is losing the readiness to plan in the longer term.  I plan in increments of 3 months, relying on getting through the next round of checks before I plan anything significant.  I have a sense that it is “tempting fate” to plan beyond the checks and lack confidence to make firm plans far ahead.

I think that the greatest losses are in fact, connected with the gains.  Specifically with the gains of new friends.  Before diagnosis I knew of only a very small number of people who had been diagnosed with cancer.  I had never known someone who was actually going through cancer treatment, particularly chemotherapy.  Now I have a number of personal friends who have been diagnosed and many, many more online friends for cancer is a big presence in their lives in a variety of ways. Where friends have been brought into my life by a combination of cancer and the internet, some have been stolen by the same benefactor.  I was distraught to learn of the Bad Fairy’s death last year, the first time one of my new cancer given friends became a cancer stolen friend.  Every cancer theft is one too many and hits hard.  And as well as the grief of losing someone, there is the added dimension of being blatantly reminded of our own particular vulnerability and mortality.

This cancerversary might have a sombre mood this year, but I do take considerable note of the fact that after 2 years I am indeed still here.  I am feeling well and strong.  And if the next checks reveal nothing worrisome, my prognosis improves statistically.  While I might not be able to bring myself to say “Happy Cancerversary” I can take enormous appreciation that I can say “Cancerversary” and aim for many returns of the day.

Where there is no pink pandemic

As we enter the month of Breast Cancer Awareness it is true that Pinktober might be upon many of us.  However, I would urge us to remember that the world is not an equal place.  I ask myself whether it is a good thing or not that the pink pandemic has not reached all corners of the globe?

I am keenly aware that I am physically and intellectually very distant from the sophisticated marketing and campaigning of the Breast Cancer Awareness Month.  I have yet to see any pink products with my own eyes, and with the exception of pink ribbon postering in the hospital I go to, I could actually remain unaware of the Pink Month.  Except for my online life that is.  I find it a very confusing and conflicting period, both emotionally and intellectually.  I follow the debates.  And I humbly appreciate and value the efforts family and friends put towards many cancer related causes, in my support.

One of the concerns I frequently hear is that there we are past the stage of raising awareness, everyone knows about breast cancer, and that the focus must change.  I respect and acknowledge that, and believe it is true I many contexts.  However, as I have mentioned here, there are still many places where accurate and fair awareness raising are essential.  There are indeed contexts where breast cancer is misunderstood and where the causes and treatments are limited.  I have already described my reaction when my colleague expressed her surprise that I had been diagnosed because I am not a spinster.  Now it is easy to be shocked at this but let’s put things in context a bit.  Cancer is (a far as I understand) a disease which flourishes in the developing world.  Childbirth at an early age and breast feedingare acknowledged to be mitigating risk factors in Breast Cancer vulnerability.  So in a situation where there are few touches of the modern world it would not be surprising to learn that the disease probably appears to be seen more among women who have neither borne children and therefore not breast fed.  In traditional settings, these women would tend to be unmarried. Hence, a spinster disease.

This has prompted me to try and put together some awareness raising activities locally, so that I can at least highlight signs which should be recognised and which should prompt women to seek medical advice.  In this context my starting point will be to talk with women.  Initially women only, though I will seek ways which are appropriate and respectful of raising awareness with men too at some point.  At the very least, I hope that it means that Breast Cancer will be talked about openly in a fairly private and comfortable setting. We will explore together what breast cancer means, starting from what people already know and believe. I expect we will also talk about what kind of treatment options exist.

In order to try and understand the situation more clearly in preparation for this, I have been talking with friends about their experience and understanding of breast cancer.  I have had some fascinating discussions and learned a great deal about beliefs about the cause of breast cancer, who is “susceptible” and treatment options for people diagnosed with breast cancer, and for that matter other cancers too.  I was not prepared for the response, and do bear in mind that I have been in Asia for 11 years in working in some very untouched areas.  From what I have learned, cancer was not openly talked about and the term “cancer” not used until more recent times.  Even today, I hear a number of references to “that kind of illness” and “the serious disease”. When it comes to treatment, traditional remedies are what people trust and feel comfortable with, and indeed are often the only option available.  When exploring this together, I am sure I will learn a great deal more about breast cancer in settings which are off the pink radar.

However, this brings a real dilemma.  By raising awareness and highlighting signs which women should be aware of., this leads on to a greater demand for diagnostics and treatment.  However, high standards of medical treatment and facilities are not readily accessible to many.  Furthermore the costs of treatment is also beyond the reach of a great number of people.  So what does empowerment and awareness achieve if options are very limited, and someone is not able to access the treatment indicated?  Is awareness raising in fact more dangerous because it puts people in a situation in which they are worse off and more afraid?

There is no easy answer to this.  The ideal would be that hand in hand with awareness raising would be a move towards broad access to treatment and care.  I guess that is what we have to strive for.

So while the debate rages around pinkification, I have the aim of sharing a side which does not generally feature in the discussions.  The reality that for many women around the world the need for awareness and treatment is urgent and for whom the debate around pink October has no immediate relevance.