Shaping 2012 with three little words

This year it has actually been really hard to settle on my three words to guide and inspire me in the coming year.  To be fair, I knew it would be difficult because I have liked my previous choices so much.  Not only have they been the right words for me, they have been the right words for me in that particular year.  When I first saw the idea of selecting three words at the end of 2009, it spoke so clearly to me and the three words came almost instantly.  2010 was indeed a year of recovery, discovery and laughter as I moved through the months of heavy treatment, back to Scotland to see family and friends after so long, returning to work and finally growing those characteristic grey chemo curls as I moved towards the end of the year.

Last year’s words clearly represented a shift in where I was with “harmony, vitality and adventure”.  Harmony in terms balance in my life, professionally, personally, emotionally and physically as well as harmonious musically.  Vitality encouraged me and spurred me on to build on my daily swimming and be even more active, taking up the gym and becoming fitter than I probably have been in decades.  And adventure – well, this has been a favourite and I hav embarked on a number of adventures throughout the year, which have grown in their adventurousness as the year progressed!

So I started thinking about the words for 2012 over a month ago, looking forward to the process of selecting the words as much as I look forward to a new series of the Amazing Race!  As the time approached I would start thinking of the overall areas I want to focus on and pick up on words as I heard them, read them or even as they came to mind as I was ploughing up and down the swimming pool.

I was however, right in my guess that this year’s choice would be much more difficult though.  How could I settle on words which I liked as much and which were as meaningful as the previous years’ words?  How could I pick only three words when there were just so many to choose from?  I veered from extravagant words through to simple words, playing with each in how they balanced each other as well as how they sounded together.  It is interesting too, that the mood of the words changed somewhat as I worked through the recent thorax and Twang Arm pain and associated fears, and that is reflected in my ultimate choice. Finally, after a great deal of polishing, reflection and dictionary searching I have my three words to share:

Resilience, escapade and wonder

Resilience comes first.  This is one which I have leaned increasingly towards as the challenges of the past weeks played out, and the pain I experienced.  It expresses the priority I aim to place on building my strength both physically and mentally so that I am in a better place to deal with whatever might come my way. The past weeks showed me that despite my pretty good health, both the cancer itself, and its treatment (combination of chemo, the radical surgery, radiation and the calcium-stripping Tamoxifen bonus side effect) have led to a fragility which I have to recognise and respect.  So I intend to continue to build my strength physically, with my precious swimming, and the less popular but equally important regular gym visits and other healthy pursuits.  Mentally and emotionally I will continue to prioritise my creative time and take control of what is in my hands.  This year has seen me join a creative writing group and latterly a Book Club which have been lovely ways of connecting with likeminded souls here, as well as an inspiring way to spend free time.  These are ways of building my strength and capacity to make me more able to “bounce back” following whatever unexpecteds and unwelcomes head my way.

The dictionary definition of resilience is 1) the capability of a strained body to recover its size and shape after deformation caused especially by compressive stress and 2) an ability to recover from or adjust easily to misfortune or change.  There is also a very interesting discussion on psychological resilience on Wikipedia which tells us that “Resilience has been shown to be more than just the capacity of individuals to cope well under adversity. Resilience is better understood as the opportunity and capacity of individuals to navigate their way to psychological, social, cultural, and physical resources that may sustain their well-being, and their opportunity and capacity individually and collectively to negotiate for these resources to be provided and experienced in culturally meaningful ways”.  How apt.

My second word is escapade.  I toyed with coining my own noun “escapaderie” to describe the broad concept of being involved in escapades but decided that was just a bit too inane!  An important word for in 2011 has been adventure.  I have referred repeatedly to adventures, made field trips and short breaks into adventures and plotted adventures.  These have all represented a shift in strength, confidence and independence.  Two years ago I was unable to walk unaided through Bangkok Airport.  Two days ago I returned from a fairly physically demanding trip to a remote part of the country, involving local flights, side car/trishaw transfers, exploring by cycle, pony and on foot and long boat trips which I had to board by slithery narrow planks!

It was a my Mrauk U adventure and pushed me further than I could have imagined possible at the beginning of even this year.  My 2011 adventures have included remote field trips to North Shan and the Ayerawaddy Delta, a trip to Chiang Mai by overnight train and my somewhat extravagant birthday trip to the temples of Angkor in Cambodia.

In choosing “escapade” I wanted to maintain that sense of making the most of experiences, reaching out for the new and continuing to push myself.  For me though, escapade also has a touch of naughtiness about it which appeals to the rebel in me!  This is confirmed by the definition I found of escapade – “a usually adventurous action that runs counter to approved or conventional conduct”.  What appeals additionally to me is that an escapade (in my world) can be as small as an almost imperceptible gesture through to a grand action which attracts attention.  I can apply escapade to so many actions, even to the way my friend and I behave in the oncology waiting room together, being naughty cancer rebels and giggling about the grief we are going to give our doctors in the form of never ending questions!

And my third word, wonder, came to me in the swimming pool as I was ploughing northwards and southwards, waiting for the sun to rise.  Again this has a variety of meanings.  As a verb it encapsulates the action of questioning and enquiring, descriptive of my inquisitive soul as well as critical to my work.  And there is never a shortage of things to wonder about!  As a noun, it is that almost innocent sense of being in awe of things from the most simple through to the truly breath taking and grand.  Throughout 2012 this will remind me to retain that sense of appreciation in what is around me as well as honing my natural curiosity.

As in the two previous years, I am ridiculously pleased with my words.  They fill me with optimism for the coming year and the sense that I can take control of what is in my own hands.  And that is another reminder that much as we cannot change many things which happen to us, particularly in the land post cancer diagnosis, there are many ways to shape our life and experience which are in our hands.  Only we can grasp those ourselves and we have the capacity to interpret what is around us accordingly.

And that is why I have chosen the image below.  A doorway into an unknown place, dark and frightening.  It is also an image which gives me goosebumps of exhilaration as it reminds me of the emotions and new found confidence I felt when exploring the ancient and mysterious temples of Angkor earlier this year.

I wish you a 2012 which is as kind as it can be, and for continued strength and resilience from within each of us as well as from each other.

British Summer Time

I have arrived safely in the UK and find that jet lag, i phones and cold rain abound!

I can’t believe the difference from this time last year when I arrived following the triathlon of treatment.  From my gymnastics display in Dubai airport through to being unable to lift my luggage off the conveyor belt I knew that I would struggle with independent travel last year.  Sure enough, hubby J ferried and portered for me throughout the visit and I leaned very heavily on his support.

This year is unrecognisably different.  Although I am struggling with jet lag (I had forgotten it gets light at 4 am here in the summer) and rather tired, I have already been gadding around the country and London.  I even carted my luggage on the underground all the way to Kings Cross Station on my own!  Thank heavens they have installed lifts, albeit a very complicated system which should surely entitle anyone successfully surfacing where they intended to an Amazing Race like prize.  While I am tired, I feel strong and have re-found my confidence after it was stripped from me last year.

So now I am on the train to Scotland, grumping about the fact that there is no tea, or any hot drink on the catering trolley, and that a charge has been introduced for the onboard wi-fi.  Still this was balanced by a surprise check in facility for luggage.  “Yes, please – do take my suitcase and save me the trouble of humphing it onto the train, struggling to find it a little home and then worrying about it throughout the journey:.  Most convenient.

When I alight I will surely find out that I should have put socks on.  I have on ongoing issue with socks and always forget to wear them and often forget even to pack them.  Socks are not something which I have much use for in Yangon.  Well, in the days since I got a proper prosthesis 😉

In a couple of days I will head to a remote and restful Island off the west coast of Scotland for some special time with my father.  My overall break in the UK is shorter this year so I am whirlwinding around the country to try and see my family.

It is probably a good thing that the daylight hours start so early and last late into the night so that I can cram as much as possible into the time.

Recalling Radiation and radiation recall

Today is another Landmark Day – it is a year today since my last radiation treatment.  A whole year.  And it was not just the end of Rads, it was the end of what had been the triathlon from hell indeed.  The whole stretch of heavy treatment had started at the beginning of October 2009 with surgery and soon after, the first chemo.  What felt like minutes after the 8^th chemo came the start of Radiation.  There was hardly any time to breathe as I trundled rapidly along the treatment process.

And then, finally I was locked in the Bunker for my final session of beeps and zaps, and then I was allowed out into the big wide world.  I could finally make plans to get back to the UK and see family and friends in 3D who had been holding my hand virtually all the way through.  After months of being on a loop between Bangkok and Yangon, staying away from crowded places, napping several times and day and counting the spaces between treatments I was suddenly FREE!

So here I am a year later.  Filled with a mix of emotions and looking and feeling like a different person.  I had not been expecting that strange “after the treatment” phase very helpfully discussed in Dr Peter Harvey’s article, and often called the “new normal”.  It was impossible to imagine that I might rebuild after the destructive yet life-preserving rounds of treatment.  But I have indeed re-built.  I have hair again, thank heavens, even if it is still the wrong colour.  I am much much stronger and fitter.  I have re-gained my independence.  Of course I live looking over my shoulder with Captain Paranoia feeding my fears, but that is part of the deal.

There are, however, the obvious reminders.  That scar of course.  Twang Arm.  My port.  Additionally, I had a rather unexpected and unwelcome reminder of radiation last month.  After I had my port flushed, as usual a sticky plaster was placed over the puncture mark.  As frequently happened, my skin became a bit irritated underneath the plaster and then when I removed it the folowing day, a layer of skin peeled off with it.  I was gifted a beautiful, elastoplast shaped wound to accompany my port scar.  A friend joked that I was aiming to remove my port by peeling it off layer by layer!  I might give it a try if it is less painful than the surgical way?

I have since learned that this tenderness and irritation could well be linked to what is euphemistically called “radiation recall” so that is something else to talk to Dr W about when I see him next.  It cleared up with careful treatment but my skin continues to be very sensitive thanks to the combination of surgery, radiation and chemo skin and the aggravation of a hot and humid climate. It is something else to keep an eye on and something else to remind me.

For today, though,  I am glad to be in such a different place.  I am happy to recall that last dose of radiation and everything it signified.  I am particularly thankful that this year my eyes are open to seeing so many things which I didn’t see last year.  I completely missed the jacaranda blooms which I love so much.  They must have been there, but out of my view in my sheltered routine to and from the hospital, keeping my head down because of the troubles in Bangkok.  So this year I have been blown away by the variety and splendour of so many different blooming and blossoming trees in so many different colours.   I am sharing this picture from my field trip of a week ago, and a glimpse of the amazing blossoms, signs and symbols of regrowth and regeneration that surround me, which I completely missed last year.

Eggshells

Now that the latest round of checks is behind me, I think I have an apology to make.  Around the time of these appointments I get so incredibly stressed. I feel as I am walking on eggshells, waiting for just the slightest pressure which might cause me to fall again into a great abyss.

However, I think that is probably nothing compared with the eggshells that people around me are having to walk on!

I confess to being supergrumpy and ultra jumpy.  I apologise wholeheartedly, but I have to say I do not think there is that much that I can do about it.  I have already said that I am grateful for these checks, but that does not make them any the less scary.

I know that it is really difficult for people to know what to say to me before these checks.  And I have had the audacity to moan ungratefully here about some of the encouraging and supportive comments I have received.  For example, I have found it difficult when people tell me not to worry, that it will be all right.  I have these checks because it is possible that it will NOT be all right.  Wishing me good luck is of course appreciated, but even that is tricky as it feels like tempting fate.

In fact, it is probably impossible to find something to say which I find suitable before these checks.  The root of the problem, however, is not so much what people say to me, but the fact that I am in this situation at all.  Indeed the problem goes right back to October 2009 when I heard those life changing words confirming that I had cancer.  At that moment of diagnosis, a sense of “comfort” is taken away.  All possibilities that there might be a non sinister explanation disappears and the thing we dread is a reality.  I certainly remember feeling a sense of disbelief which fostered attempts at denial.  This CANNOT be happening to me? I can not have cancer.  This can not be true.  In the days and weeks immediately following diagnosis and the start of treatment, I remember waking in the mornings, and for an instant had forgotten that I had cancer.  Then it would hit me, that sudden and overwhelming mix of grief, fear and disbelief crashing around me as realisation  dawned.  It reminds me somewhat of bereavement when you have moments where you can briefly forget that a loved one has gone, only to experience that shock and sadness anew alongside the awareness.

That is why I react so strongly to words of support.  Supportive words feel like platitudes, and we become supersensitive to all manner of language and expression.  I am trying to protect myself and build a barrier in case I hear words I do not want to hear at the checks.

It is reassuring to know I am not alone here.  I have been following a number of debates on Breast Cancer blogs and discussion sites devoted to the question of how we perceive ourselves.  We are given labels such as fighters, survivors, patients, brave warriors to name but a few, and we all feel passionately about these terms.  And we often disagree amongst ourselves.

Many people feel that some terms can almost be offensive.  For example, the very analogy of fighting comes in for a lot of criticism as it implies that those who are taken by cancer have somehow ”lost”, perhaps not fighting hard enough.  It implies that advance of our cancer is somehow related to not being strong enough or allowing it to take over.

I even find that the language I use and choose changes too, as does the way I feel about it.  One day I might react strongly to being described as being a fighter, while other days it might feel flattering to me!  It clearly struck a chord with me at some point, as the moniker of my blog bears witness.

Similarly, the role of attitude is credited with our prognosis.  I do have a positive attitude and approach to this wretched disease.  I like to take the proverbial **** out of cancer.  Well that what it has done to me, so fair’s fair!  It has involved me taking control over elements of my life which I feel can have a bearing on my health.  Being proactive about swimming daily, for example, or cracking inappropriate jokes at the expense of cancer.  However, I am not under any illusions that being positive will make a significant difference to whether or not the cancer beast makes a comeback.  The reality is that as much as cancer treatment has advanced, we know that it does not always succeed in containing or eradicating the cancer because it is sneaky and clever and some forms do not respond to the treatments.  Of course being positive and strong helps us in how we deal with our illness and treatment.  It can make a huge difference in a day.  However, it is most definitely NOT the same as “beating” cancer.

I personally found cancer treatment a struggle, though not necessarily a battle.  The distinction makes sense to me!  I found the treatment hard going, physically, emotionally and it without doubt took a toll.  As far as the cancer in my body was concerned though, it brought very little in the way of sign or symptom let alone something significant which I felt I was battling.  It was more like hosting a battle where one adversary was silent and invisible and the other only too evident.

If that is not contradictory and complex enough, I have to say a few words about the phenomenon  of ”celebrity cancer” which seems to behave differently to ordinary person cancer in the way it is reported in the media.  The indiscriminate nature of the illness and gruelling treatment and side effects of course belie that of course, which adds to the sensitivity around this.  I recently  read a number of news reports of another celebrity who has been undergoing treatment and happily this been successful.  Of course, that is the best news and what we all want to hear.  However, despite myself, I found that I was becoming highly irritated and even offended by the report when it referred to the cancer being “beaten”.  What particularly upset me was that the person concerned had previously been diagnosed at stage 4.  Now I just want to stress that I am quite delighted that this person’s cancer has responded to treatment and can totally identify with the relief and happiness in their family.  What I find difficult, however, is the implication that Stage 4 cancer can be “cured” rather than arrested and managed.  I don’t understand how stage 4 cancer can be “beaten”.  I know it can be managed, as a chronic illness and some of the terror of a stage 4 diagnosis is dissipated perhaps.  But how can it be beaten?  How can it be banished?  And what does that say to families who have lost a loved one?

There are two points to come out of this rant.  Firstly, this is based on reports rather than hard facts.  There is often a tenuous relationship between the two.  Sometimes not even as much as a tenuous link.  In all likelihood, therefore, my reaction is not even based on the facts.  Secondly, can you see the eggshells?  My goodness, how much did I overreact to this?

Whether or not it is an overreaction, it illustrates very clearly how sensitive this whole cancer business makes us.  Hearing that you have cancer brings a fear, confronting us with our mortality.  So it doesn’t really matter what language we use, or what people say to us because we now have this constant presence – the threat of cancer, which has been forced into our lives making us sensitive and vulnerable.

The irony is that I have such overwhelming support and I lean on that enormously.  All around me (in every sense) people are supporting me through this.  And how do I respond?  By being as prickly as a hedgehog having a very bad hair day.

No wonder folks feel they are walking on eggshells.  Cancer is making us walk on eggshells.

Middle ground

I am in a pretty good place right now.  Apart from kicking myself that I didn’t start this sunrise swimming strategy months ago, that is.

I have now reached the end of the second week of this dawn swimming and cannot believe how good I feel, despite having fewer hours sleep every night.  I am astounded at how much difference there is between an evening swim and a morning one.

I feel as if I have more energy – take that, Tamoxifen!  I hadn’t realised just now tired and fuzzy I was feeling all of the time.  I am still on a bit of a low peep but definitely feeling less tired.  Twang Arm is taking a bashing and it feels as if it is losing its grip (every pun intended 😉 ) – it is less painful and I am able to swim quite a bit faster than before.  More than anything else though, it is a great psychological boost and I find my mood lighter and motivation stronger with this different daily regime.

The timing is good too.  We are in a particularly frenetic period at work and I am finding it hard to keep my promise to myself about maintaining a healthy work life balance and this start to the day helps enormously.

However, I have to remember that I am still in that recovery phase and my body still marked from the ravages of the triathlon hell of cancer treatment.  It is difficult to communicate that though.  In this strange post treatment life, I feel that the rest of the world expects there to be only two states which I can be in – either ill or completely well.  There doesn’t seem to be an in-between.  Yet the reality is that I am physically still very much at an in-between stage.  I am well.  I am pretty strong. But I am not quite fully well.  The punishing months of chemo, surgery and radiation have really taken their toll on me physically.  I still have some neuropathy (numbness) in my fingers although it is improving.  My toes are still uncomfortable, numb and feel stiff and too big for my feet!  I have a horrible kind of deformed toenail where one of my toenails fell off and another is still a gross black colour.  My fingernails keep splitting.  I feel generally sluggish and slightly lethargic, and my thinking also feels a bit slower.  I have the side effects of Tamoxifen to add to that – perhaps that is the main cause of the sloth-like state.  Perhaps I should have a label round my neck which says “handle with care”?

So I feel that I am very much in a kind of middle ground, albeit a good middle ground, which is heading in the right direction.  But a middle ground nonetheless.   I’ll keep you posted on how that ground shifts as I am sure it will continue to do so.

A trip to the spa?

An interesting realisation dawned the other day. 

I know my hair is growing, and I can feel kinks, especially at the back.   There is not much to see in the mirror though, and it is still horribly short and shouts “cancer” (at least to me)  from the front.  I have been frustrated that I am the only one who doesn’t actually know what the new wavy hair looks like.  And then I realised – I could take a photo of the back of my head and actually see what is happening.

I stood with the camera poised slightly above and behind my head (obviously my right arm as Twang Arm was having none of that) and clicked away merrily.  Unfortunately the result was not too enlightening (and I missed my head altogether a couple of times).  My creative skills were working fully though, and I had the presence of mind to ask hubby J to take a picture of the back of my head.  What a brainwave!  And indeed, there are wavy, curly locks. 

They are still the wrong colour, but that can be addressed.  I am still very reluctant to even trim my hair as I am intrigued as to how the waves will turn out, and how long they will last. 

I am also happy to report some progress on the nail front.  I still have the fascinating lines and the two tone nails from the Taxotere days.  I have 4 lines – one for each Taxotere treatment, and the darker colour for those times.  As the lines are moving up towards my finger tips though, they crack and split along the lines.  Not pretty.

Similarly to the hair, I feel reluctant to do much about them until they have grown more and the funny lines and splitting are no longer there.  If that coincides with the right timing for repair of the hair colour, then I reckon it will be time for a long awaited trip to the spa for a real pampering!

Same same, but different…… (“Things will never be the same again” reprised)

In Thailand something you hear and see often is the expression “same  same” to describe anything resembling something else. I have often heard it used to persuade someone that something is just as good as the original (Rolex, fake Rolex for example – same same).  There are t-shirts with variations of how it is heard and even a guest house called the Same Same Lodge.  It always makes me smile when folks comment on hubby J’s resemblance to a Thai almost always with “you, me – same, same ah?”   Used just as frequently is the potentially puzzling “same same – but different”.  It is not too obscure though and is used often to describe something fairly similar to something else.  But a little different, obviously!

How fitting that life changed so much in the land of “same, same”.

At the beginning of 2010 I remember thinking through how much life had changed, how much would never be the same again , and some things which I hoped would perhaps be similar to those pre-cancer beast days. It is interesting to look back at those lists and see if I am indeed settling into what is often termed “the new normal”.

Things that really have changed for good

 • Bra shopping!! As anticipated, this is a whole new experience. Choices are greatly restricted and rely on proper fitting – no buying off the shelf! Happily from a Scottish perspective the cost implication has not been quite as much as I thought it might be, but I do wish there were front fastening options in the shops!

• My left arm. Oh dear. This is not good. Horrible Twang Arm is still causing me grief. It hurts, movement is still severely restrained and despite the fact that I swim regularly and exercise it, I don’t honestly feel it is really improving much. Perhaps when rainy season is over and my swimming is not so disrupted, that might make a difference. The numbness is definitely reduced though. One thing is for sure – this battle of nerves and determination is set to last a long time.

• Health and travel insurance. This is something which continues to really worry me and I need to stop putting off the need to research the implications.

• Using a computer. This has not been as bad as I had feared and Twang Arm has coped well with a return to office life. However, too much time on the computer does aggravate it a bit which is something I need to balance carefully in this technology based, online world.

• My wardrobe. Well, the wardrobe has not changed much and I can wear more than I could a few months ago. But Twang Arm does not like the contortions involved in getting dressed so I tend to rely on clothing which has buttons and is easy to put on. I am able to dress myself now which is progress though!!!

• Being spontaneous. And planning. Although it sounds as if the two are mutually exclusive, it is really difficult to do either for similar reasons. Planning is particularly tricky as I need to work around the 3 monthly checks. Moreover, in the back of my mind (or quite near the front of my mind actually) is the constant fear of another encounter with the cancer beast and a reluctance to plan anything in the further distance.

And the things which felt as they would never be the same, but which I hoped might well be one day………..

• Being able to plan a visit to see family, a night out, weekend away, holiday ……. Taking into account the difficulties in planning generally, I have to say that I now feel that I have much more control here. i have been able to get back to the UK, I have been able to rebuild a gentle social life. Next on the agenda has to be a proper break, whether it is a weekend or longer….

• Having a choice of things to order from a menu. Great progress here!! When chemo finished I asked Dr W2 about foods which I should avoid (or have more of) in order to regain my health and to keep the cancer beast out of sight. He said that research and data often gave contradictory messages, such as the tofu and soy debate. His advice to me? “Live your life, eat healthily and sensibly and don’t stress about food”! So while I eat very carefully and healthily (mostly 😉 ), I have far greater freedom in what I eat, and far greater choice then when I was on chemo. Coffee is again allowed, although I have never been a great coffee drinker. It is nice to enjoy the occasional cuppa or iced coffee. It was be wonderful to have a clear directive on what is good and what is not, but I know that is not realistic, and I have to balance clear nutrition messages with “living my life” as Dr W2 said.

• Scratching my ankle without getting shooting pains under my arm! I have just tested this one! Scratching anything these days is tricky because of the after effects of Taxotere (neuropathy and crumbling fingernails) but it seems that the shooting pains have at least subsided, if not disappeared. I still have supersensitive skin, and my shingles area is particularly prone to itchiness and irritation. But I do think that the Twang Armpit (how gross!) is less squealy and sensitive that it was before. It is still swollen and I find that my latest (well for months if I am honest) worry is that lymphodema sneaks in. It is a risk following lymph node surgery and can start long after you think there is no longer a risk. And it is another horrible thing to have to deal with.

• Walking to work carrying my lunch box and umbrella. We are still in the throes of rainy season here, and rainy season means RAIN! I actually find the rains really refreshing, revitalising and mostly enjoy the energy of the rain pounding on the surfaces, and lush vegetation it brings.

However, it can be pretty disruptive as roads flood, the power goes off, the thunderstorms are dramatic and even with an umbrella you can become drenched in minutes if caught outside when the heavens open.

So walking to work is limited at the moment. It is also something which very annoyingly seems to aggravate Twang Arm. However, I AM able to walk with lunch box, swimming gear and my own bag as well as holding my umbrella to keep either the rain or sun off me. Adding in the laptop bag makes it a bit more difficult but let’s see how the coming months progress and if Twang Arm is further banished. And of course, if rainy season will ever end!

• Dancing. Been there! Done it!!!! Ok, style was pretty “unique and Twang Arm tried to spoil the fun, but “yessir, I can boogie!”

• Sleeping in a position other than flat on my back with a pillow under Twang Arm. I still sleep mostly on my back and Twang arm still sleeps mostly on a pillow. I have tried to sleep on the surgery side which I have stopped for a while as it seems to aggravate Twang Armpit and the numb sensitive area behind my underarm. It is slightly easier to sleep on the port side (or is it starboard??) but it still nips a bit and still pinches the port area. Yeech.

• Going to the hairdresser. Well, I have of course had one visit to the hairdresser, although I know we can’t call it a haircut. More like a bit of a buzz! I am not sure whether to take the frosty locks for a tidy up yet as I am torn between losing precious hair and getting a style which makes me look like a person, and preferable a woman person. I had a very funny moment a week ago, when J asked if where the hair drier was. My reaction was one of irritation that I had left it unused for months – what a waste! Then I remembered why it has been unused!

• Travelling on my own. My trip back to the UK in June really brought it home to me much I had lost my independence. Even more difficult was the loss of confidence in doing things independently.  I was unable to carry anything much on either side, found pushing a trolley very difficult and it was impossible to try and get my luggage off the carousel at the airport. I had to ask strangers to lift off my tiny neat little travel bag, to my embarrassment. However, that was 3 months ago and just after radiation. Now I feel much stronger. The fact that I can carry bags to work and push a trolley in the supermarket (and in Bangkok airport last month) is a sign that I can probably manage easy gentle trips.

• The taste of water. Oh it is so good to be able to drink water without it tasting like stagnant drains. Since my last check I have also almost stopped drinking fruit juice because of its high (natural as well as artificial) sugar content and love the taste of fresh, cold water. I still tend to squeeze a bit of fresh lemon but that is not to disguise it anymore, but rather to enhance the taste as well as adding in some fresh vitamin C. My taste buds seem to have recovered well, and I cannot think of any foods which I cannot eat or which taste different. And after a long time I am finally able to eat spicy food again, though I still cannot tolerate very spicy.

• Having a pedicure and massage. This is a funny one. I have had a few foot massages since finishing the treatment, but am still reluctant to have a massage or pedicure. I have so many sensitive spots that a massage does not really appeal to be honest. And my toes are numb and still feel too big for my feet so I do not feel inclined to have a pedicure either. • Looking forward to a trip to Bangkok. I think this will take a while. Perhaps a lifetime. A trip to Bangkok is a trip to the Hospital, tests, needles, scary appointments and fear. There may be the occasional trip to Bangkok which will be for other reasons, but given the regularity of the checks, most travel there will not be something I look forward to.

• Measuring time in units other than 3 weeks. This is an interesting one. While I no longer live in units of 3 weeks, I still find that time and planning is based on the hospital visits. They are the top priority when it comes to planning and other things must fit in round that. Happily the unit is no longer 3 weeks, but a more manageable 3 months which allows a sense f being able to settle and relax more without counting days.

• Being able to dress myself in clothes which go over my head. Work in progress. As I mentioned earlier, there are more garments which I can wear now when I compare with several months ago. I can also dress myself which is great progress. But the clothes which go on over my head? Hmm – must try harder I think!

So looking back over the past months, I can see that many of the things I had hoped would gradually ease have indeed done so, and I am able to feel a sense of “normality”. I know that this normality and life before I was diagnosed are not the same thing at all. Hence a popular term being the “new normal”. But I think I prefer my Thai version of the new normal – “same  same – but different”.

Moving on from the 3 month check

Sometimes it is hard to remember that it is only 3 months since all the heavy treatment finished.  Apparently a body subjected to cancer treatments usually needs at least as long to recover as the treatment took.  So that means I should allow around 8 months (at least) from the end of May to re-build slowly. 

However, I realise that despite my good intentions, I expect myself to be feeling “the same as before” and I find it hard not to push myself.  I often find it quite tricky to get a balance which allows me to recuperate and I am striving to function as I was before diagnosis.  I am reminded when I get very tired, or as happened today (written on Sunday), when I was out at the market and realised that I wanted to sit and rest (and have a big cold glass of water).  I had been wandering around for a couple of hours in the heat and humidity so it is not really surprising.  So I listened to my body’s reminder and stopped for a refreshment and a break.  I was delighted to find that I quickly bounced back and was ready for a new round of shopping in no time.

It made me think of a friend’s facebook post which asked fellow cancer survivors what changes they have made since diagnosis.  I posted a quick reply, sharing rather smugly that I am now doing a Pilates class twice weekly, swimming as often as I can, (and as often as the monsoon allows), being very attentive to my eating habits, taking time to do creative things I enjoy and being pretty disciplined about working sensible hours.  After keying it in, I realised that this actually represents quite a lot of changes.  I really have to focus on these changes and the role I have in my recovery when the worry worm tries to eat away at my mind in the night. And I really have to try to give myself time to heal.

As good a day as any for reflection

Sunday was a strange day with strange emotions.  It was my birthday, and brought with it a host of mixed feelings.

At any age, it is of course something to celebrate, but as the years advance it is also an important time to reflect.  This year more than ever.

My birthday last year was one of those big milestone ones and I found the lump a few weeks later.  I can’t help but connect the two events in my mind.  It is odd to think that so much has happened in the past year, and that I was blissfully unaware of the cancer present and growing when I was marking that milestone birthday last year.     

Looking back over the past year, particularly, is impossible without becoming emotional.  And the nature of cancer means that looking to the future is equally fraught with emotion through the uncertainty which a cancer diagnosis brings.

So the way I approached this birthday, was in keeping with the way I try to approach my relationship with the cancer beast.  By small actions which I have in my control, and which make me feel good.  So I rounded off the day in the pool, swimming one length for each of my years, which took me to a smidgen over a kilometre.  That can’t be bad for a girl who has been through the Triathlon from hell!

Cancer free? The all clear?

Now that the heavy treatment has ended the most frequent thing I hear is the question about whether I have had the “all clear” and if I am now “cancer free”. 

This is a really tough one to understand, let alone explain, but essentially and unfortunately, there is no such thing.  Once you hear those words – in my case “highly suspicious of cancer”, there is no turning back.   You can’t put the lid back on the box, life changes forever.  The tumour has been cut out, along with any surrounding tissue which might be affected, including lymph nodes by the dozen.  My whole system has been blasted with 8 cycles of super chemotherapy which has destroyed any fast growing cells (including cancer cells which might have been lurking after the surgery) and also laid waste to my immune system, red blood cells and still affects the nerve endings in my fingers and toes.  Massive doses of radiation in the area local to the original tumours have swept up any final vestiges of any cells attempting to break away and try and re-group into a sinister manner.  And now the Tamoxifen is blocking hormone production which can spark new naughty cell activity.  So all in all, a massive arsenal of heavy duty medical might has been used to destroy the cancer and any remnants there could be.

And that’s marvellous, trust me.  It is highly reassuring to know so many powerful agents have been used to obliterate any cancerous attempt on my body.  However, there are no guarantees with this beast, and recurrence or even spread and secondary tumours are entirely possible.  The best to hope for is that the regular checks find “No Evidence of Disease (NED)” The longer you hear the magical NED following diagnosis, the better the statistics are and the prognosis in the longer term.  Hence the regular monitoring and follow up, and the reason why it is every 3 months for the first 2 years. 

So, I am no longer a “cancer patient” in that I am no longer undergoing treatment.  I am still here, so I am sure I can now call myself a “cancer survivor”.  However, I cannot call myself cancer free as I have no idea if there is or will be any re-grouping of those dangerous cells.  After 5 years without recurrence the checks reduce to an annual basis because the statistics indicate that recurrence is less likely after 5 years.  Even then I cannot be cancer free. 

That is on the medical and physical side.  On the psychological side, I hear a reprise of “things will never be the same again” picking up. I can do many things now that I could not even a month ago and am getting stronger every day.  However, my mind is always alert to my vulnerability.  I am hanging on to the next appointments and checks with the Drs W and W2 in the hope that they will tell me that everything worked and I have no need to worry now.  But we all know that it won’t happen.  The best I can hope for is NED.  I know I should not try to read little clues into everything Dr W2 says as it does not reassure me, but I find myself unable to do otherwise.  His reluctance to remove the port or de-port me convinced me that he thought I was a certainty for recurrence.  Equally difficult is the fact that I can no longer take my professional path for granted.  Would I be too great a risk to employ after my current contract finishes?  I know I need to just put many of these things to the back of my mind, but that is way easier said than done.  The appearance of that small lump on my neck last week and the sinking feeling it brought indicate the precarious nature of my relationship with the cancer beast.

So cancer-free I am not, and never will be.  However, I will have those regular checks and very careful monitoring and I have to be confident that if the cancer beast makes any attempt to show its face again it will be spotted very promptly.  It will also be met with another arsenal of treatment and as unpleasant as that is, I know that I can cope with it.  As long as the sun keeps rising in the East, or rises anywhere really, I have to remember how much I have to be thankful for.

Onwards and upwards it is then…………