An epiphany

IMG_2644Those 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.

3BC89D63-C41F-4E95-BF1B-9965DEC0D2F8

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.

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.

medsDr 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.

Water music

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.

 

Blurred vision

We are slap bang in the midst of rainy season here in Yangon.

rains 1

The season is characterised by blurred images, through rain-streaked windows.

rains 2

Windows are steamed on the outside and the rain is warm.  The air is thick and sticky.  And everyone adapts to a different daily routine throughout the rainy months.

I am wondering if the onset of rainy season, coupled with the change of Femara “diet” is playing a part in those side effects getting worse.  I am not sure of that, but I do know that the topic of Tamaxofen and Aromatase Inhibitors (AIs) and their glorious side effects is not one which is going to slip back easily into the box.  I experience that duality and contradiction of feeling comforted not to be alone, but sad that so many are dealing with these side effects when I read Nancy’s discussion on the very same topic.

Nancy and I seem to be telling a very similar story. AIs can bring very difficult side effects. Not to everyone, and none of us know how they will affect us, but to many. When the side effects become very debilitating and painful, it brings the challenge of making a very tough decision about continuing them or not.  As the discussion sparked on the comments on Nancy’s blog post itself, and on her Facebook page shows, everyone has their own take on this.

We just do not have that guarantee that they will keep cancer at bay or under restraint.  What we have is statistical probability according to our own pathology and cancer profile. Taking the AIs could be what puts us over the line in terms of favourable probability. This might just be the ticket which keeps cancer at a distance.

And so the decision about whether to weather often very painful and highly debilitating side effects or not is not straight forward or clear.  Everyone has the right to make the decision which is right for them and for that to be respected.  It is a judgement call, and an individual one.

crystal ball

However, none of us can see a picture in that crystal ball, and what is within that blurry vision.  We can only do what we trust is right for us.

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 95th 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

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.

fish oil

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.

thank you starfish

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