An epiphany

Those days of the Big Checks in Bangkok are in the past in many ways. Many years were punctuated by three monthly check ups, and then six monthly with more thorough checks annually. These were a Big Deal in my post diagnosis life. I was fortunate to have such thorough follow up from the end of the heavy treatment in mid 2010 until I left Asia in mid 2016. Another world, another lifetime, it often seems. Now checking is different in frequency and nature. The past is indeed a different country.

Every year in October, in addition to the three month or six monthly checks, I would turn up at the hospital for what Dr W fondly called the “Big Check”. He had explained to me at diagnosis, that once the active treatment was completed I would be called back for checks every three months for the first two years, and every six months after that until I reached the five year point. Then I would graduate on to annual checks. The three and six monthly checks would be lighter, but at the one year point I would additionally have a mammogram, ultrasound and any other checks indicated.

Those checks were a mixed blessing. I approached each round of checks with trepidation, and the annual Big Check with nothing short of dread and fear. I knew that I was incredibly fortunate to have a variety of bloodwork, physical examinations, mammogram and ultrasound and if indicated, further scans such as CT. I knew that if there were any nasty activities underway and any signs of progression or recurrence, there was a very high chance that these would be spotted during the Big Checks. And of course, that was my greatest fear. That there was some nasty malignant beavering away of cell multiplication out of view. Yet, alongside that Big Fear, there was the attraction of knowing that if the checks all came back without any worrisome results, then in all likelihood I was in very good health and the designation of NED (No Evidence of Disease). And NED is exactly in whose company I wanted to be.  If I passed through these major checks with no worrying results, then I would be rewarded with enormous relief and reassurance.  l could then breathe out and get on with some serious living until the next round. My first followup checks were in early July of 2010, thus by by strange coincidence my first Big Check took place in October 2010. Exactly a year from diagnosis. And also the start of the visible Breast Cancer Awareness month which was even present in Bangkok.

Those first checks set me on a path of appointments, blood taking and other checks regularly until I left Yangon in June 2016 to my new life in Rwanda, saying goodbye fondly to Drs W and W2, and the teams which had looked after me. We had been a team for 7 years and had been through a lot of hiccups and nastier moments together.

As well as the checks, my ongoing followup consisted of taking Tamoxifen once the active treatment was completed in the May of 2010. This was not a pleasant experience with its many side effects including the very nasty one which tried to do away with me altogether – the pulmonary embolism which appeared in July 2012. When I was first prescribed Tamoxifen, research and trials indicated that the prognosis was best when patients took the drug for 5 years. The prospect of 5 years on a medication with such heavy side effects is daunting. When the embolism happened I was taken off Tamoxifen immediately. And prescribed Femara/Letrozole. This is an aromatase inhibitor and works in a different way to Tamoxifen which is a selective estrogen-receptor modulator (the wiki link is need to explain that as I am not able to do so!) Femara is more usually prescribed for women who are post menopausal. It has just as many side effects, equally heavy and unpleasant such as joint pain, weight gain, fatigue, dizziness, increased cholesterol just to name a few and I was both thankful and frustrated about these “extras“.

As I was approaching four years of taking the hormone therapy Tamoxifen and then Femara, and almost able to touch the five year point when I would be able to stop, new research findings were hitting the breast cancer headlines. What an ironic blow to learn that women who took the medications for ten years had better outcomes than those who did not, or who took them for five years. I knew what was ahead before the next round of checks. And sure enough. Dr W2 recommended that I keep on taking the Femara. For an additional five years. Five. Whole. Years. That felt like for ever! Or until mid 2020 …

Leaving Asia and the attention of Drs W and W2 with the reassurance of the Big Checks, was a massive step out of a comfort zone which I loved to hate, and really valued. Moving to Rwanda, meant that I had an annual mammogram in Scotland around the time of the checks in 2016 and my unexpected return to Scotland in 2017 meant a very different approach to cancer follow up, particularly as I approached the ten year point from diagnosis. This involves an annual mammo and a letter to let me know if there is any need for follow up, and a separate check up with the breast nurse. No single day to focus on both with dread, and knowing that clarity would be provided. No bloodwork and tumour markers with my record and trends. Instead, lighter checks over several days or weeks. A very different experience, particularly psychologically.

This year, I had to juggle the dates around as my nurse appointment was scheduled earlier than the mammo so results would not have been available at the consultation. So with some phone conversations, and a house move all underway, it was agreed that I would have the mammo and then see the consultant prior to moving to a new area. This took place, ten years to the day from my formal diagnosis and surgery by some very bizarre coincidence. These checks are not nearly as stressful as the Big Checks in Bangkok because they do not include bloodwork so I have no idea if tumour markers are within the trend that was clear throughout the regular testing in Asia. Occasional testing of markers is not useful, so I did not miss the results, just the ongoing knowledge that these were stable. The significantly lessened stress of these checks is balanced by the limited reassurance. A little sigh of relief, but the underlying nagging uncertainty of NED status.

So after a very short wait, the  consultant invited me into his consulting room, and noted that I had had much of my treatment overseas, asking me if it had been Paris or Singapore? I began to explain …

The mammo result was unremarkable, happily and we talked through my general health and the worries that I always harbour. Then we talked about the Femara. I was fully expecting there to be some new research which indicated that results for women who took the medication for 15 years had better outcomes … and prepared for that news. To my surprise, he said that the latest research and analysis shows that there is no marked benefit in staying on Femara beyond 10 years. He also said that there was a kind of a ‘hangover’ of the medication as the benefits stay in the system for some time after it is stopped. This was the precursor to him advising me that I could stop taking Femara. After TEN YEARS. He asked how many tablets I had left before I would need a new prescription. I had around 3 months, and that would take me through to early January. “Then, I suggest, that you continue to take these until they are finished. And then stop. There is no benefit in getting a new prescription, you can stop when they run out”.

And  just like that, I was given permission and the advice to move forward by a giant step.

I have been taking this feeling of lethargy, joint pain, and general effort needed for everything I do for granted for so many years, I did not actually believe the day would come when I would no longer be taking this heavy, albeit probably life preserving medication.

And so around 20 days ago, on Twelfth Night, 6 January,  I had my own personal epiphany. The realisation that this ten year phase had come to a close. As I prepared to go to bed, I took my glass of water and the last Femara in the packet. Hopefully, my last ever Femara. The end of an era indeed.

I am looking forward to seeing if there is any change in how I feel. Let’s see. One thing is for sure – I am bound to tell you.

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Disorientation

And so the sun sets on another week, and I find myself in a different continent.

Under an African sky – in front of my eyes

I returned to Africa a week ago after an unexpected, and unwelcome reason for extension to my stay in Scotland. I should have returned two weeks earlier, after a short visit but things always take a surprise turn in that post diagnosis cancer world. I am fine, no nasty cancer surprises but I can attribute what happened directly to cancer.

So what happened, that warranted hospital admission and being unable to return for two whole weeks? A nosebleed, that’s what. Yes, a nosebleed. And one I blame unequivocally on cancer!

It started fairly innocently just before I had an optician’s appointment. One of a series of things to be done, while on home leave. The bleed would not stop, and reluctantly I had to cancel the optician. I pinched my nose, and waited patiently as the time for another appointment approached. The bleeding continued and worsened. I called the medical practice and was advised that I should go the Accident and Emergency Unit at the local hospital where they would be able to deal with the bleeding. The last thing I wanted to do, but with my history and being on blood thinners this was the correct and only course of action.

Treatment was not pleasant or nice, and for something as trivial-sounding as a nosebleed it was frightening to see how quickly a situation can become worrying. I was admitted to hospital and with the various procedures the bleeding was eventually staunched. I was allowed home the following day, with a strict set of instructions. No hot showers, no exertion, no flying or travel and the worst? NO TEA! That was a serious struggle. I have never craved tea so much in my life! But heat or exertion can re-start the bleeding and that is not a risk to be taken, so no tea and no immediate return to Africa.

How can I blame cancer? Quite easily in fact, the nose bone is quite clearly connected to the cancer bone in my case. Blood thinners were the cause of the nosebleed, and those blood thinners are a consequence of the Pulmonary Embolism I had, which was attributed to Tamoxifen. PE is a relatively rare but dangerous side effect of Tamoxifen. And of course,Tamoxifen is prescribed following hormone receptive cancer diagnosis. Thanks, cancer!

The sides and afters of cancer and its treatments continue to rumble on and we are reminded that even at times of NED (No Evidence of Disease) we exist with vulnerability and fragility.

I am enormously thankful that this medical hiccup has been dealt with relatively easily, but my confidence has again been damaged. I am approaching 7 years from diagnosis and am in pretty good health overall. Yet the fallout from cancer, while it might not be visible or evident apart from to me, is not to be underestimated. Life is fragile, precious and unpredictable. At the hospital, the ENT specialist advised me to be cautious and not to trust my body as it has let me down before. Interesting words from a doctor, validating anxieties and vigilance.

So I am pleased to have returned to my new life in Africa, though being in three continents in as many months has proved disorienting briefly. It is good to be able to look ahead with no immediate plans of long distance travel and to concentrate on my reorientation. My three word mantra for the year powerfully reminding me of my focus for the year. The time is right to seek to crystalize and settle now and I have a very clear reminder of my middle word – nurture – timely and so pertinent.

I returned home yesterday late afternoon as the sun was sinking in the sky and I was treated to a spectacular sunset. And I was present in every sense to witness and appreciate it. With no thanks to cancer!

 

Costly and subdued.

The promised update.

The latest round of checks is behind me and I am breathing out.  That means one thing – that the important tests were mostly fine, and that I can breathe out slowly again.

I have been surrounded by support and care, and cannot express how much I value that.  There is never a time with these checks that you can truly put it all behind you and consider it “done”.  But it is good for now and I am just that little bit closer to NED (the precious No Evidence of Disease) than I felt last time.

My two cancer Docs, Dr W and Dr W2 were both happy and thorough.  My tumour markers remain elevated but stable.  As in almost exactly the same now over the past 18 months, and in fact since the rise which prompted the scary scans in October 2012. So this meant no bone scan this time.  Which was very welcome news! It does mean that there will be a number of scans and extras in the upcoming Annual Big Checks in October. But that is ok, because for now I can breathe out.

My aspiration is for Dr W2 to call me “boring” and I have still to attain those dizzy heights.  Last time he saw me I was “complicated” which is much better than “interesting” but still not boring.  This time I am in a better place in the scale – “expensive”! He asked me if I need more meds, and I said that I did.  I said that I could get some myself, but he expressed concern that they might not be good quality or genuine and I agree that it is better that he prescribes these.  However, that comes at a cost! Confidence that the meds are genuine means that they are also expensive.  And as time wears on, I gather more meds instead of shedding any.  Added to that, I am fighting off a couple of infections at the moment and needed to add an antibiotic to the mix.

Dr W2 also said that I seemed to be one of a small number of long-standing patients.  I was surprised and he told me that many stop consulting him after their acute treatment, and many return back to their original countries.  So I have some kind of loyalty pass which is rather comforting.  Dr W similarly spoke very warmly with me, offered support to the Yangon Breast Cancer Friendship Group which we are establishing and was generally very encouraging.

It was not all so warm and cosy though.  My endocrinologist was less happy with my bloodwork.  My previously wondrous cholestrol levels have been steadily rising as are my sugar levels.  I am working hard to keep diabetes (which has been in my mother’s side of the family for generations) at bay and it seems that this is not going to last much longer if the trends continue.  I find this so frustrating when I exercise so consistently and eat very carefully.  I showed him my exercise log (ok, it’s a rather obsessive log of how far I swim daily, how far I cycle and how long I exercise for – I find it really motivating).  I find that I exercise between 180 and 250 minutes a week on average. He told me not to blame myself as if there is a strong genetic predisposition then I cannot halt that.  However, I also consulted with a nutritionist to see if there is something I am missing or not doing properly.  With her, I worked through a typical day and exactly what I eat.  She looked up at me and noted that my diet is more healthy than hers!  She suggested a few adjustments – such as reducing my fruit intake and adding some protein to my evening meal.  So I will give that a try.  She also noted that the lack of thyroid function is significant in metabolism and weight issues, even taking the synthetic thyroid which also made me feel better.  But then she suggested I am for a 3 kg loss for my next appointment.  Which totally deflated me.  I feel that aiming for a specific weight goal just does not work.  I struggle and work so hard not to gain, I feel an automatic failure if I cannot lose kilos.  I prefer to ensure that what I do is right and if that leads to weight loss then that is great, but what matters is to eat carefully and exercise.

Ironically, Drs W and W2 (my oncologist and surgeon) were happy to recall me in my usual six months, but the endocrinologist wants to see me again in three months.  Sigh.  A step backwards, it feels.

The ray of sunshine in this though, came from Dr W.  He knows me well and asked me if I still swim and cycle and I confirmed that I do and that this season is perfect for the morning routine.  I told him that there were concerns about my cholestrol and weight and he instantly said that this is well known of Femara.  Which was enormously reassuring and validating, and is very much what I suspected as these issues emerged from the very first checks following the switch from Tamoxifen. And as another friend said “cholestrol is better than cancer” and for sure, it is!  It is not great but the Femara is there to keep the bigger demon at bay.

As I move forward then, I juggle the bonus combo of a genetic propensity to diabetes and high cholesterol, lack of thyroid function and the side effect tactics of Femara. None of which I can do anything about, except continue as I am.

So here I am, again on the other side of a round of checks.  Again slowly breathing out.  And again subdued. I might not be “boring” but I am expensive so that must make me rather classy – right?

And whatever else I am, I am beyond thankful.

 

Skin deeper

There has been an elephant in the room, and not one which sits quietly in the corner.  It has been rampaging through the house causing destruction and damage in its wake. I wrote Skin Deep over many days and did not actually believe I would put it “out there” online but as I felt myself sinking deeper and flinching from those small incidents which are on the surface slight, with tears in my eyes I finally pressed the “bare my soul” button.

I do not really know what I expected from the post.  Being honest, I had not thought ahead.  The purpose of writing was to vent and pour out the distress in my heart.  So I was astounded by the response to Skin Deep. As well as numerous comments on the post itself, I received personal emails and Facebook messages and a number of people here reached out with love and understanding.  I had not anticipated the many thoughtful messages reassuring me that physical appearance is not the same as beauty. I have been emotionally overwhelmed and it has taken time to put my thoughts in order and prepare this reflection and learning.

As I read through and responded to the comments, replied to emails, spoke with friends who reached out and quietly reflected, the clearer a picture developed of a whole host of people struggling silently.  So many live with constant debilitating side and after effects and swallow the assumptions that everything is behind us and rosy now. Many of us are silently absorbing assumptions of our appearance, while struggling with a variety of conditions which impact on how we look, so many of which are beyond our control.  I had lifted the lid off some Pandora’s box.

I still feel fragile, emotionally and the wellbeing and appearance issues are unlikely to change.  But I learned a great deal from writing the post, reading and reflecting on the responses and bringing together these thoughts into some key messages.

I am not alone

I am incredulous at the number of people struggling with these interconnected issues, in silence and isolation.  We are dealing with a host of issues – side effects from many meds, after effects from current and previous treatments, disfiguring surgery, pain, destruction of functions including thyroid. We may look well but be living with debilitating conditions, or we may look unfit and unhealthy yet are following extremely healthy lifestyles as far as we can. In summary, as “cancer in my thirties” said in her comment

“many people fail to realize how horrible the side effects of our treatments can be — and how much they impact our lives each and every day”.

Even if I struggle with these, knowing I am not alone somehow helps emotionally and validates these feelings.  However, another side is that very few of us expect or are prepared for such debilitating side and after effects. We should be grateful that we are alive – and of course we are, but that doesn’t mean that this is something that can be wrapped up and put easily in the past when we live it every day.

Far too many are silently living with this.

Intent

I did not intend to make people feel uncomfortable.  My post did not point fingers at any individual but aimed to draw out the consistency of reaction.  I particularly want to stress that I do not for a moment believe that there is unkind intent in many of the comments and looks I experience.  My friend Becky wrote very powerfully of her experience and in particular placed it in the context here.

“Being called fat in SE Asia isn’t necessarily a negative thing. It’s quite acceptable here to talk about people’s size. ……………

In some countries, being told you’re big can be a compliment. I sense it’s not necessarily a compliment here, but rather an observation (perhaps without much judgment).“

It is so important to hold on to this, and try and remember it is more an observation.  The challenge is that of course I come from a context where it is broadly offensive to comment on a person’s weight.  And that is why it hurts.  Purely and simply, I struggle terribly to be on the receiving end without it that stab of pain and shame.

It doesn’t matter how much I rationalise and understand – it still hurts.

Reaching out

I have found that not only writing and releasing these highly personal and innermost thoughts and feelings but then listening to the responses and reactions of others is helping me to process this.  Chronic illness, mortality, cancer and the whole psychological and emotional and invisible side to diagnosis continue in my view to be underestimated even within ourselves.  We are often caught up in our own pain and unable to see how enormously difficult for those around us themselves to deal with life-threatening diagnoses in their loved ones.

Indeed, I really did not have a clear purpose in my mind when I started on this journey of exposing my soul. I did not expect such a powerful reaction. I think that in the back of my mind, I was screaming silently that I wanted to be heard. To be understood. And not to be judged.

This path is and will continue to be painful.  Yet for now, I can say that I do indeed feel heard. I feel far less alone.  And I feel more understood.  I hope that applies to us all.

The elephant is still in the room.  I doubt if it will completely disappear. But it does seem to have quieted a little and become less obtrusive.

Skin deep

Dear people

This is a plea to myself as much as it is to others. This is an appeal to each of us, to pause and think before we judge others, especially on appearance.

I know what you think when you see me, whether for the first time or as a longer acquaintance.  I can read it in your eyes.  I see the belief that I look the way I do because I do not care about myself, I am gluttonous and lazy. I know that look which betrays pity and blame combined. Which cuts into my soul.

I know that I have not worn my years kindly.  But I do not think you know just how much I struggle with that, every time I look in a mirror and each time I see myself reflected in the eyes of judging strangers.

I do not want to have to tell in advance, that I know how it seems. As if I live a life of sloth.  But I yearn to challenge that judgement, and preface a conversation by saying just how hard I push against the forces which shape me.

I will give you an example. I move increasingly awkwardly. Femara is a drug which decreases the probability of my cancer recurring or progressing. For which I am thankful.  How can I not be?  Despite the accumulating side effects which conspire to make my mobility increasingly constrained and painful.  I push myself to get up and move about, despite the pain because I know it helps a little and that inactivity is an enemy. Despite that pain when I rise to my feet and the jarring pain in the first steps, which gradually reduces to an ache and awkwardness.  But I can tell by your looks, that you think my bulkiness is causing this lumbering gait.

I hear comments on my weight and suggestions that I should walk a little. I know that the intent is not unkind, but still I fight back tears. I hate my defensive tone when I try to explain gently that I have cycled five kilometres that very morning, as I do most mornings.  That I have swum half a mile, as I do most mornings. That I am probably fitter than I have ever been since my teenage years. The irony slaps me, knocking me sideways. I know you don’t really believe me.  I know that because, if you see me by chance one morning on my bicycle or swimming, your expression is of surprise.

I can no long walk freely.  My toes have retained that numbness of peripheral neuropathy from chemotherapy. I am frightened of falling.  I stumble even in the house and earlier this year had one bad fall. Those numb toes caught on a paving stone, slightly upturned and I fell heavily on both knees. Those tender, already painful knees.  My confidence has been dashed, and my love of walking is a memory as I pick tentative, cautious and painful steps.

Dear people, I had no idea that there were so many long term effects from treatment which has probably saved, and at the very least significantly prolonged my life. When I learned that my thyroid function had been annihilated by chemotherapy my initial reaction was one of vindication.  Here is a major reason why I struggle with my weight despite being more active and physically fit than I have ever been.  It is not sloth or gluttony.  Zero thyroid function is a very clear medical reason behind stubborn extra pounds. Every morning before my day begins, even before I put on my swimwear as the sky slowly lightens, I have to take synthetic thyroid.  Every day I take this, and will for the rest of my life.  Any hope that this artificial medication would re-shape me was however dashed as the months after this bonus diagnosis and new medication slipped by without any sign of weight loss.  An hour of exercise in the morning maintains a fairly steady or even mildly gaining weight.  Any reduction in activity results in rapid weight gain.  Which does not reduce no matter how active I am.  This is sickening and frustrating.

It is human to judge and to make assumptions. We are wrapped in our social and cultural baggage which nurtures beliefs deep within us. It is also human to smart when we are on the receiving end of those suppositions.I know that I should accept the way I look.  Even my doctor has told me I am doing everything right and that I should try not to be so hard on myself.  That is one part of the question.  The other part is how not to take it so much to heart when others are unintentionally hard on me.

And that is the one I can’t crack.  I can rationalise the comments and looks, and can attempt to reassure myself that I am not who I appear to be.  But I can’t stop it hurting.  I can’t prevent involuntary sickening twist-in-the-gut  reaction when yet another person remarks. That lingering sense of sorrow and shame which descends on my spirit. The futility of defending myself, knowing that it just does not appear credible, and minds are already made up.

Dear people, you do not know how much I hesitated to write this. How bare my soul feels putting these words on the page.  How exposed and vulnerable this makes me feel.  How sensitive and susceptible to more judgement as a result of disclosing my innermost anxieties and insecurities.  How uncomfortable about such a self- indulgent outpouring.

We do not know what innermost struggles there are within each individual, hidden by smiles and a seeming lightness of the spirit. Painting a smile and crafting gentle words while the soul writhes in pain takes enormous effort.

To paraphrase a well known saying – let us aim to be kind to others , for we cannot know what private turmoil there is within each one of us.

Future tenses

I have arrived.  I have no idea, and no good reason for this being my very first visit to Malaysia despite living so near for over a decade.  All I do know is that I am here now, and very glad to be.

I think that the impression I have always had, particularly of Kuala Lumpur, has been that it is a highly modern, futuristic city with of course the iconic Petronas Towers.  Now I am kicking myself that I have waited so long!  It is an incredible city, with a rich mix of architecture and culture.

So what could be more fitting than a sneak preview of the many photos and tales to come, with a change of background and some funky pics of the futuristic Petronas Tower high above the skyscrapers on the skyline, such as this one reflected in the table I was sitting at the first evening I arrived in KL.

A classic view of the Tower itself, for the current background.

And a couple of “preview” images of the diversity that is KL with a promise of much more to follow.

This year has taken such a toll, and although I continue to struggle with the heavy side effects of potentially life waving meds, as well as that overbearing, ever present grief, it is good to have a diversity of surroundings such as the KL setting.

A setting to inspire and remind of the past, the present and the future.

After Words

I was astonished by the level of interest and response to my “thanks, but no thanks” rant last week.  I was in part reassured to know that I am not alone in the physical and emotional space and that these “afters” and “sides” of cancer and its treatment are very real and encroaching.  However, at the same time I was saddened and frustrated that so many of us are struggling.  Often silently, because we do not want to appear ungrateful or to upset family, friends and those around us.

From the outset in this cancer experience I have always reminded myself that there are many things which are not in my control, but many which are.  And how I live the cancer deal is one of those in my control.  I would rather be flippant and feisty, and poke fun at cancer than dwell in the doldrums and feel unhappy with my lot.  It just is what it is and I get on with it.  Mostly.

What came across clearly in the comments and conversations prompted by the rant, was the fact that amidst this weariness, we feel compelled to maintain a positive outlook and we feel guilty when we sometimes want to scream and stamp our feet.  Well perhaps not stamp the feet as they hurt too much!  There was a widely shared sense that we do not allow ourselves to have off days, and times of frustration or anguish.

I have been adjusting to these side effects of these meds for some time, and last week reached the point where I lifted my head out of the sand and realised that the pain and discomfort are such that there are many things which physically I can no longer do.  I have had to acknowledge with some resistance, that the break I have booked for next month will be far more physically challenging than I have prepared myself for and that is beyond frustrating.  This is not about inconvenience, this is about debilitating physical effects which are stopping me doing what I have long taken for granted.   For example, one of the favourite parts of my work, visits to our project sites are increasingly difficult – I used to hop on and off of boats, sit on the floor in villages and walk for days in the Himalayas.  Much of that is now too painful, unsafe or, sadly, beyond my capacity now.

That is when I reached that tipping point and this rant took shape.  I feel better for venting, but nothing of course changes the physical deal, the side effects are still there, and I still have difficulty walking. But it is what it is.  I deal with it. I get on with it and adjust as far as possible.  Mostly with a smile, but sometimes, it just gets too much and I weep.  Not often, but sometimes.

These past weeks have been tough ones, and the prospect of more of the same in terms of side effects feels heavy.  But I do work hard to balance this and make the most of what I DO have, and carpe that diem.

Most days I am incredulous that I have been able to realise my dream and ambition to live and work overseas, in such extraordinary places.  I have now been in Asia for 13 years, and am humbled and moved by the incredible experiences I have been through and the wealth of inspiring and amazing people I have known.  I love my life, and I have no significant regrets.  There are of course a heap of things I still would love to do, sitting in my wish bucket.  But, I have so much to be thankful for and if someone called “time” tomorrow, I would not plead for the chance to do that something I have not managed to get round to.

Even as I sit here, looking out onto the lush garden, the wind whispering in the mango tree, frogs croaking as more rains approach, I still have that sense of naïve wonder and fresh enthusiasm at being in such a place.

However, some days it just takes that extra energy and determination to get on with the day to day, and I find that the reserves have run low and it is just out of reach.

It is what it is.

Sometimes even geckoes have to rant.

Thanks, but no thanks, cancer.

There are so many different ways of handling a cancer diagnosis.  There are more ways than there are people who have or have had cancer, in my view.  As each one of is individual, each approach is unique.  It might be similar to many others, but it is essentially unique.  Why more ways than people?  Because this varies even within ourselves.  Much depends on where we are in the cancer experience.  In the three years eight months and 22 days since I learned I had cancer, I have veered between the “WTF – Cancer??” to “warrior” to “cancer rebel” to “advocate and activist” to “inspiration” and many more.  Each is valid to the individual and to where they are in the experience.  What is not valid is suggesting that one approach is right and another wrong – each must be respected even if it very different to our own approach.

One approach is to see cancer as a gift. Diagnosis of a critical disease does often bring a sense of gratitude and an accompanying “carpe diem” pair of spectacles.  And that is fine, but the carpe diem is as far as it goes for me personally.  Thanks, but no thanks, cancer.

I was in a sound sleep the other night. I must have stirred a little, as I was pulled abruptly to my senses by a familiar tugging and tightening in my calf. Yet another leg cramp was forming. Much as I try to relax the muscles before it spasms, I can rarely prevent the cramp from taking hold.  I know that if I can get out of bed and straighten my leg with the floor underneath then it will help, but lifting my leg off the bed makes the cramp worse.  Sometimes I can put up with it, but other times the pain is so excruciating that I hear animal like noises coming deep from my gut.  It is agonising for me and distressing for hubby J as he is disturbed from his sleep and tries to help me relax the muscle. The cramp the other night was one of the worse I have ever had.  My calf was in a complete spasm and even my foot was locked like Barbie’s, – my toes splayed in different directions.  I tried to move off the bed but was completely unable.  It seemed like an eternity and took a horribly painful manoeuvre to get onto the floor and start to ease the cramp. I was finally able to hobble and the cramp slowly abated.

The spasm had been so severe though, that the pain stayed for several days.  These cramps are a likely side effect of Femara (Letrozole) which I have been on now for nearly a year, following the switch from Tamoxifen.

Throughout that following day, I walked as if I had just celebrated my 95^th birthday and was both immobile and incontinent.  My right leg was tender and painful from the cramping and it struck me just now much the Femara side effects have been getting progressively worse too.  I am increasingly stiff, move awkwardly and have pains in my elbows, fingers and both knees.  I yearn to be able to move freely and resent this debilitating impact on my wellbeing and the constraints on my mobility.  The days following this particular cramp session saw me walking very gingerly and awkwardly indeed.

Thanks, but no thanks, cancer.

There have been a number of unwanted “gains” from cancer – we are too familiar with Twang Arm, Captain Paranoia and of course the gaping void and long scar which is where my left breast used to be.  But there are many more.  Some are side effects of current medication, some are the after effects of the various treatments.  They are all unwelcome, but part of life.

Thanks, but no thanks, cancer.

I have a host of unexpected after effects – brittle and constantly breaking nails, highly sensitive soles of my feet, skin which reacts angrily to as much as a wrong look, or sticking plaster or stray hair, a digestive tract which remains sensitive following the ghastly gastric effects of chemo.  I still have the remnants of peripheral neuropathy in my finger tips (barely noticeable but just there) and my numb toes.  The numb toes which were the likely cause of my recent fall in March.  I often trip just walking around the house.  One of my colleagues recently remarked that I was now walking more clumsily.  I have difficulties with memory too, my personal memory card seems a little stale and has particular difficulty with numbers.  Finally “chemobrain”- a level of cognitive impairment “thanks” to chemotherapy which is now more recognised and understood to be very real.

Thanks, but no thanks, cancer.

One post diagnosis gain is the regime of daily meds I have to take.  Before cancer I used to pop one little blood pressure pill daily, to counter the family trait of high blood pressure which hit me suddenly when I hit the age of 40.  Now I have a whole colourful smorgasbord of meds throughout the day, some of which interact with each other, some which have side effects and which require another med.  Sigh.

The Smorgasbord

As soon as I wake, usually around 5.30 am I have to reach for med No 1.  I have to take a synthetic thyroid because I have zero thyroid function.  I have no thyroid function because chemo zapped it into non-existence.  I have to take two small tablets and then I usually get ready to head out for my swim and cycle. Around an hour and a half later, after breakfast I have the next round of treats.  I now take a combination of 2 meds to keep my blood pressure stable.  One of these interacts with the thyroid med so I need to leave at least an hour between the doses.  Very handy if my morning routine has to change for any reason, like travelling, working away or if I were to have a longer sleep at the weekend.  Fine.  In the evening, I have a supper and bedtime cocktail blend of warfarin and Femara.  The Femara has replaced Tamoxifen which tried to do away with me by clotting my lungs with a sprinkling of clottettes.   The warfarin is the other gift from that little embolic episode. And my nightcap is a massive horse-tablet sized calcium supplement to counteract the effects of Femara which likes to deplete calcium from my bones.

Thanks, but no thanks, cancer.

I did not exactly enjoy being on Tamoxifen.  Would anyone? I felt a general weariness and also had terrible leg cramps as well as the legendary hot flushes.  I was glad to wave good-bye to it though and had hoped that Femara might be a little gentler.  After all, Femara and even Letrozol sound like more pleasant names than Tamoxifen, surely?  Unfortunately not.  As I approach my first anniversary since the Femara – Gecko union, I have had to face up to the fact that I am gradually feeling worse and not better.  I have been putting up with joint pain and stiffness which has been gradually but clearly increasing.

Thanks, but no thanks, cancer.

I was due my regular blood draw for monitoring warfarin effectiveness and clottery levels this week, and finally decided just to ask Dr O about the worsening pain and stiffness.  As soon as I mentioned and gestured about the pain he sighed and said he was pretty sure it was Femara.  He said that he has a few patients on Femara and even the way we describe the pains is pretty much the same. He asked me how long I have been on it, and when I told him that I have had 3 years now on either Tamoxifen or Femara he screwed up his face and said that they were truly horrible meds and that he could not wait for me to get to the five year point and have “freedom”!  Which was incredibly encouraging to hear.  Partly the validation that he recognised how draining and debilitating these side effects are, but even more so, that perhaps even after a couple of years, that I might actually start to feel better.  I had not realised that I have been taking this misery for granted and had pretty much accepted subconsciously that it would continue and just get worse.  For ever.  He ran a few extra blood tests – just to make sure that he was not missing anything, so calcium levels, potassium and liver function were all checked.  And very happily, all came back nicely within the regular ranges.

However, he has recommended a Fish Oil supplement to help ease the joint pains.  Another colourful addition to the smorgasbord.  And that brings with it another consideration.  So many of the meds interact with each other they have to be carefully timed and it starts to get really complicated. The meds do not just interact with each other, but also with certain foods.  Warfarin is less effective when you take wonderful cancer-busting greens and other Vitamin K rich foods.  And other healthy foods like cranberry can cause haemorrhaging – all of which curtails nutrition options and takes so much control away from me in ensuring I have as healthy diet as possible.  So contradictory and counter-intuitive.

I also ranted on my Feisty Blue Gecko Facebook page that evening, just to see if I was alone and how others dealt with this.  I was again reassured that I am far from alone, and my weariness with the side effects was valid.

So I have to confess to being grumpy and crabbit at the moment.  I am so over this cancer crap, and the fact that I cannot sweep it to the side as if it had never happened.  And that is not beginning to take into the account the whole “No Evidence of Disease is not the same as Evidence of No Disease and this beast will continue to haunt and taunt me”,  but purely dealing with the realities of the here and now of life following diagnosis.

Don’t get me wrong.  I know I have a great deal to be thankful for and I AM truly thankful.  I know I make more effort to value time and carpe the diem.  I still make a “five sticky plan” for weekends, aim to maintain a work life balance as far as possible in this incredibly demanding context of change and more change, and play (subtly I hope 😉 ) the cancer card if that is too threatened.  I have a beautiful morning routine which is largely “thanks” to cancer in that I know that exercise is known to be a factor which can play a part in reducing recurrence.  I have my Wish Bucket full of starfish,  kangaroos and funky nail art, and an update on that is coming very soon too.

I am also planning an escapade.  The year has been one of my toughest, so a little escape for creative and healing time is planned next month.

And of course, cancer gives me HEAPS of material and thought which makes its way into blog posts!

So there are a number of things from the cancer experience which I acknowledge have had a positive influence. And apart from cancer, I have a great deal to be thankful for – living and working in this part of the world being just a starter.

But cancer?  No, I do not think the day will ever come when I could ever say “thank you” to cancer.

Tamoxifen Tigress

Although I have crossed the finishing line in the Triathlon from hell, I have the delights of Tamoxifen to contend with for the next 5 years. My tumours were hormone receptive which means that I have been prescribed Tamoxifen to prevent recurrence.

In a similarly cavalier way to the one in which I approached radiation, I thought that swallowing a pill every day would be no big deal. Then I learned about the effects of Tamoxifen and the reservations many women have about taking it, especially over a prolonged period of time.

Tamoxifen is seemingly a pretty strong medication with a number of equally strong side effects.  Just what a body recovering from surgery, chemo and radiation needs! That gives a choice between more long term strong drugs and the possibility of the cancer beast returning. Not much choice really, in other words. The more serious side effects include – blood clots, strokes, uterine cancer, and cataracts and the list of less serious side effects is very long!

In my first check after chemo, Dr W2 prescribed my Tamoxifen. And as an indicator of things to come, he also prescribed a calcium supplement as one of the side effects can be to affect bone density. Incidentally, those supplements are enormous – about the size of a brick and just as difficult to swallow.

Already I am experiencing a few of Tamoxifen’s delights. As I still have a number of residual side effects or after effects from chemo, it is not always so easy to know what is caused by Tamoxifen. For example, the nasty bruise on my big toe. It is not getting any smaller, and I read that a number of women on Tamoxifen lose finger and toe nails so I am not sure if I have that treat in store. Similarly, I have a permanent sensation of coldness in my toes and increasing numbness. My toes feel too big for my feet and they are awkward to move. My fingers still have that annoying neuropathy (numbness) and it is still difficult to do up buttons, write, and other fine motor tasks. I discovered yesterday that I am incapable of peeling an orange!!

One horrible side effect is a visibly fuzzy face – how gross! I can see a down developing on my face and am going to have to get rid of it somehow before I am thrown out of the ladies changing room! I keep thinking it might just fall off and putting off the task of finding some appropriate way of getting rid of it.

Another effect is that my personal thermostat is broken. It is common to experience hot flushes and I sure have my fair share of them, especially at night. However, I also have a strange sensation of cold frequently, a real cold spell. I lurch between shivering and wrapping myself in the sheet and then have to throw off all covers and try and cool.

Something I have been trouble with a little, but not greatly so far (touch wood quickly) is leg cramp. Though when I do get them, my goodness they make me squeal. Considering the most common time for them seems to be just before dawn, it is a great way to wake me up!

The other hormonal type side effect is one which is not too problematic for me – one of moodiness and irritability. Not much fun for those around me though!

I have only been on Tamoxifen for a couple of months but already I feel its effects. The thought of taking it for 5 years is daunting – but let’s face it – the alternative is a site worse!

And the 3rd event of the triathlon? The Marathon!

If chemo was the Boxing Match in this triathlon from hell, then I think Radiation is the marathon.

It feels non stop (even though it is for such a short session) because it is daily.  I have to keep ploughing on even though I am exhausted, and my legs are totally uncooperative!  Each session is like a mile marker, though there are 25 markers for me rather than 26.  However, if I include the long planning and simulation session at the start, we are indeed at a nice 26 sessions!

I realise that I approached this Radiation Marathon with the attitude that it would be a walk in the park after chemo.  In many ways it is, but because the chemo is so tough then it did give me a false sense that all other treatments would be “easy” in comparison.  I think the fact that I started radiation very quickly after chemo has also been a factor.  It is indeed great that I will be finished with the heavy duty treatments sooner (all being well, crossing numb fingers, peeling toes and even Twang Arm with non Twang Arm if that will help).  However, it has meant that I was a bit frail at the start of the Radiation.   In Yangon the Doctor I saw just before I came to Bangkok did tell me that Radiation is not easy, has its side effects and also often brings some depression.  Now when you hear “a leetle depression” with a lovely French accent it doesn’t sound so bad at all, in fact it almost sounds quite cute.  It doesn’t feel at all like the weepiness and grey feeling which descends most days.

Don’t get me wrong, the treatment is not painful, it does not involve needles (well not as part of the treatment though they still need to monitor blood levels – yuck!), and the side effects are not nearly acute or debilitating as they are with chemo.  But it is uncomfortable, lying totally still in an awkward position while the machine goes through its daily workout.  It is also quite boring, even with the music so I have started counting the beeps.  This also helps me keep on track and know how far I am through the session.  I seem to get 75 beeps every session, each lasts about 3 seconds.  Except for the 9th and 14th beep and one much later on – for some reason these ones last much longer!  I say that I seem to get 75 beeps because I usually lose count in the 30s!  Apparently everyone gets a different number of beeps or zaps, depending on their diagnosis, treatment required and calculated by the specialists and the computer.  I am also finding that Twang and other arm are already feeling stiff and sore.  I feel nauseous (but I hope this will pass) and still very weak and tired.  I also have some skin irritation from tape which covers the marks.  One part reacted and has blistered – chemo skin is still very sensitive and probably over-reacted!

I think the main reason it feels like a marathon though is that the whole day, if not life at the moment, revolves around the daily treatment.

On the positive side, I am passing those daily milestones fairly quickly  – 6 passed and 19 to go, so I have already completed nearly a quarter of the course.  I just have to keep ploughing onwards………