Season’s Greetings

It can be very confusing listening to a Scottish person speaking.  We use many words and expressions in their own unique way and often these are not abundantly clear.  For example, we go to the shop or supermarket for our messages.  Does that sound strange?  Well, it is not strange to us at all.  It simply means shopping, particularly our grocery or food shopping.  Another word we use a lot is “piece” and you would often hear talk of a cheese piece, a piece and jam (jeely piece) or be asked “what’s in your pieces today?”  To us, a piece means sandwich,. So we also have piece-boxes which are used for packed lunches.  Not quite like the tiffin pot which holds hot food and meals, the piece box holds sandwiches and maybe an apple!

One deliciously expressive word we use a fair bit is “greet”.  It has nothing to do with the broader English language definition of “to salute or welcome in a friendly and respectful way with speech or writing, as upon meeting or in opening a letter”  Oh no – we use it rather it as a colloquial term for crying or weeping and it also has the sense of complaining or grumbling.  It is not a flattering term.  Greeting is not the word we would use for a dignified, composed weep.   And it is none too sympathetic or generous.  The image conjured up of someone greeting is of a contorted face, scarlet and probably snottery, and a significant noise volume attached to it.  To have a greeting face is not something to aspire to at all, with its associations of crabbitness and grump.  (Crabbit being another wonderful expression in Scottish slang for grumpy or miserable).  For example, this description from the Scots Language Centre quotes the use of “greeting face” which is most definitely not a compliment.

So that is the greeting.  But what is the season?  Well, for me it is the season of memories, milestones, landmark days and anniversaries.  We are also on the threshold of Breast Cancer Awareness Month which in itself creates a considerable stooshie around the globe. (A stooshie being another wonderful Scots word for a commotion, rumpus, or row, or a state of excitement or anxiety; a tizzy).  And there is one serious stooshie on the horizon across the blogosphere and breast cancer world.  Thoughts on that stooshie are for another day, today my thoughts relate to that season as it relates to my own experience.

Today marks the start of this season.  For it was 23 September 2009 when I discovered the lump and life as I knew it took a turn for the very different.  The landmark days come hurtling at me after that, with October 2 marking The Day I Found Out, my Cancerversary.  That was the day I heard those life-changing, burned-onto-my-memory words “this is highly suspicious of cancer”. On October 5 I had my surgery, lost my left breast along with its tumours, a heap of lymph nodes and their nasty cells and gained Twang Arm.  Although I spent most of the day unconscious, it is certainly a day I will never forget!  On 21 October my portacath was implanted in time for the first chemo on 23 October.  Exactly a month after the day I found the lump.

So it is a season for greeting, remembering, reflecting and to a certain extent, re-living those traumatic days of October 2009.  Add to that the annual Big Check with the attendant scans, examinations and appointments and you have a very sensitive season indeed.

So please excuse me if I get a bit prickly this season…

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.

It’s that time of year again…. Landmark Days and Extreme October approaching rapidly

I have a chill in my stomach as I see the date on the calender.  We are rapidly approaching a time of year when I am dragged kicking and screaming headlong into a face-off with my encounter with breast cancer.

Firstly, Breast Cancer Awareness Month, which has turned into a Pinktoberfest of every imaginable product marketed with pink ribbons and pink anything in many parts of the world.

Secondly, it is a period loaded with my own Landmark Days, that is, anniversaries of  significant cancer “milestones”.   The first one is rapidly speeding towards me and is now less than 2 weeks away.  That is September 23, the day I discovered “the lump” and the day that it all started.  Being diagnosed at the beginning of October is a cruel move and means that awareness stares me in the face even more than usual.  And just to add an extra bonus frisson, I will have my Big Annual Check in the middle of October.  The stomach churning game of “Hunt the danger signal” Just in case there was any in danger of breast cancer slipping my mind.

Last October my head was very firmly in the “I-can’t-believe-that it-is-already-a-year-since-this-nightmare-started-while-I-can’t-believe-it’s-only-a-year” space. It had been impossible to imagine the one year point back at diagnosis time.  The one year milestone was a time of intense and mixed emotions.  Now, 12 months, 4 NEDs, innumerable needle sticks, 360 odd Tamoxifen, at least a dozen passionate encounters with Capt Paranoia and 3 memorable adventures I find myself in a somewhat different place.

Throughout this year, as I have parted company with the phase of treatments and appointments you live your life around, I have been able to see things from a slightly more objective perspective.  I have also learned an incredible heap of things, some of which have shocked me and spurred me into shouting out.  And as I am in a different space, I have a strong feeling that the Pinktober month is also taking on a different shade.  It’s more like an “Extreme October”. There is a significant disconnect between the marketing Pink-everything in sight October extreme and the debate (or lack of it) around the need to progress in understanding breast cancer, especially metastatic and widely held beliefs such as the one that early detection guarantees cure.  I find there is another extreme between the excess of marketing in many countries and the total lack in others.  Last year I did not spot one single item of pink merchandise here, and in Thailand I saw evidence of the Awareness month in the hospital but not in the shops.

Last October my posts were mostly reflective and highly subjective.  I marked my Cancerversay by writing a letter to Cancer which probed the thorny personal relationship I had developed with cancer.  My Big Check came at the end of the month and I moved out of the month embracing a new phase.  I think this October will be different.  For one thing, I have learned a great deal from blogging peers about the limitations, shall we call them, of the pink campaigns.  I am far more tuned in to the debate and am learning uncomfortable truths.  The blogs I am reading and the friendships I am making are bringing me into a movement of questioning and challenging which I suspect will become even more vocal as the month wears on.  I have been intrigued to hear that there have been some “overtures” made to some of my snarky, smart blogging buddies to write guest posts on commercial sites.  I sense a counter pink movement this Extreme October.

In terms of Feisty Blue Gecko, I am forming a plan for how I will approach Extreme October posts, bearing in mind how much I love my spot on the fence.  I have a particular plan forming for 13 October which has been designated Metastatic Breast Cancer Day.  (Yep, one day – what a contradiction in itself).

I am intrigued to see how this Extreme October takes shape.

Loch Ness Monster Marathon

It is not strictly speaking the Monster Marathon but it is a monster feat!

I might have gone through what I termed the Triathlon of Cancer treatments but that was not really through choice.  However, my niece S and her hubby N have chosen to run in the Loch Ness Marathon on Sunday and what is more, they have chosen Breast Cancer Care as the cause they want to support, raising both funds and awareness.  Considering S and N have two young children and have been training during wind and rain (we’re talking Loch Ness and wild Scottish weather remember) this is a really monster achievement.

I am one of 3 women close to S who have been diagnosed with Breast Cancer this year so it is an emotionally charged time.  Breast Cancer Awareness Month begins on Friday, my own Cancerversary is on Saturday and the Marathon on Sunday.  In addition to the physical demands of the marathon, S told me that she feels so emotional about the event that her tummy feels like a washing machine!  She promises pictures of the event and in turn I promise to share them here and on Facebook once they arrive from the other side of the world.

Breast Cancer has been a monster, invading our lives and it seems fitting that S and N will be running on the doorstep of an apparently much friendlier monster.

I’ll be thinking of you as you pound the lochside paths, chasing the cancer monster.  I cannot begin to thank you enough.

Landmark days 1 and 2 crossed

 I had a horrible nightmare overnight into Thursday.

I had a very vivid dream that I discovered a lump on my right side. In my dream I knew that the date was exactly a year from finding the lump and so it does not take genius nor wildly lateral thinking to see what my mind was doing. I started the process of getting myself back to Bangkok to deal with the lump, and this involved telling people quite openly that there was a new lump and that I was very worried. The next stage of the dream focused on the fact that the lump was a rather odd shape, and it felt very hard, and even seemed to have a “point” at one end. I kept prodding and poking at the lump and eventually it worked its way through the skin (revolting I know but that is what happened) and turned out to be a cocktail stick. Heaven knows how it got there but perhaps it found its way there at the time of my mastectomy surgery. Even more worrying is how on earth such a bizarre notion played out in my mind while I should have been peacefully slumbering.

I was then faced with the embarrassment of going back to the people I had told about the lump and trying to explain it was a rogue cocktail stick!

That was my very weird start to Landmark Day 1 and I woke to the relief that I hadn’t found a lump combined with the memory of the day last year.

Yesterday (Saturday) was Landmark Day 2 – a year since I was referred by my Doctor to Bangkok for investigation. Happily my dreams have not been so disturbing, but then the events of that day were less alarming too. It is all cranking forward towards 2 October and the Cancerversary. I have something in mind, and underway to mark it so watch this space…….

Landmark days ahoy!

On the horizon, looming ever larger and seemingly gathering pace are a clump of landmark days just ahead of me. In the midst of these is the big landmark day, the strange CANCERVERSARY.  This is the term I keep hearing which denotes the anniversary of discovering you have cancer. In some ways I find I approach the day with a sense of eager anticipation as it serves as a reassurance that I have survived so far, as well as highlighting how far I have come since diagnosis. In other ways it is dreaded as it is an unwelcome reminder of the horrible cancer beast coming into my life, changing everything like an earthquake, causing the very ground under my feet to lose its solidity and familiarity.

In the approach to the landmark days, I remember this time last year that I was blissfully unaware of how much my life was going to change. I find it hard to imagine what it was really like then, as it feels impossible to rewind back to what it was like not to have been diagnosed.

The first of the landmark days will be on 23 September which marks one year from discovering the lump, and is rapidly followed by another important date which was when I consulted my Doctor here on 25 September. That saw the start of serious worry and loss of sleep as the possibility of the lump being sinister became firmer. There followed a strange week and a half during which I lurched between naive hope that there was an innocent explanation to the lump, and an aching pit of fear of the unknown if cancer was the cause of the lump.

There seem to be no Internationally Agreed Guidelines 😉 for designating the day of a Cancerversary. Some people choose the day of biopsy, some the day of diagnosis, some the day they discovered the sign or symptom which turns out to be cancer. I have chosen the next Landmark day, 2 October, as the day itself because for me it represents the day that everything changed.

October 2 is the day I travelled from Yangon with feeling sick with fear, and desperate for a sign of hope. It is the day I had the diagnostic mammogram and ultrasound. It is the day I met Dr W and he pointed out the spaceship like mass on the screen, growing irregularly in different directions. It is the day my life changed, when I heard those words “highly suspicious of cancer”. I have no idea how I will mark the Cancerversary and I have no idea how I will feel on that day.

The Cancerversary is followed rapidly by a number of other Landmark days. On 4 October I will remember a year earlier having to break the news to close family and friends and my work about the impending surgery and almost certainty that it was cancer. I think that was one of the most difficult things I have ever had to do.

The 5 October is the day of the surgery and an important Landmark day as that is when cancer was confirmed and the radical surgery was carried out. Any tiny flicker of hope that the spaceship might be innocent was gone that day. Twang Arm came into existence that day. Every time I look in the mirror I am reminded of that day.

Although I knew that the lump was indeed a tumour and that there was lymph node involvement, I discovered the extent of the pathology on the next Landmark day – 8 October when I learned that 6 of the 15 nodes removed had a presence of cancer. A few days later, on 13 October I further learned that there had been no spread and that my tumour was Grade 2, and hormone receptive. I had entered a whole new world of terminology.

On 15 October I met Dr W2. Naively, I had no idea at that time how big a part of my life his larger than life character would become.

The next Landmark day is 23 October when I had the first dreaded chemo. I was terrified of the thought of chemo, the chemo itself and its toxicity, of the side effects and of the procedure. I had been re-admitted into hospital for minor surgery and I remember spending most of that day dreading the time when the porter would come to take me for the chemo. Every time the door opened my heart jumped and my stomach turned over. I didn’t know whether to be relieved or disappointed each time a nurse or auxiliary came in. The porter did come, later in the afternoon, and I duly had the first dreaded chemo.

One of the most difficult days will be marked on 17 November, although it was not a day of pain or obvious trauma like the other days. It is the day I lost my hair and met Dr Evil, who was to live in my mirror for months. My hair is still shorter than I would have it by choice, so the realisation that I have had nearly 10 months disliking my reflection in the mirror hits quite hard.

This means that October will see a number of days which will very strongly remind me of what happened a year ago. It will be a strange time and the fact that the Big Check is following soon after means that I know I will approach these days with some trepidation.

It will indeed be Breast Cancer Awareness month!