Silence, a haircut and flowery shirts

I have been too quiet recently.  Silence usually means one thing in my world.  Worry. This week has seen the culmination of some full-on worry.  So I am very happy now to be able to provide an update. An update which does not contain bad news.

The key elements of the update are:

– A haircut.
– A Doctor in a flowery shirt, nay, an oncologist in a flowery Songkran shirt.  Because a Doc in a festive shirt can’t give bad news, can he?

Last year when I arrived in Bangkok Airport at the start of the Thai Songkran Water Festival, my passport was stamped by an immigration official wearing a flowery shirt.  That’s a first and I can tell you it made me smile.  All of the immigration officials were wearing flowery shirts and broad smiles. So a flowery shirt is a Good Thing. An oncologist in a flowery shirt is an unexpected thing. And indeed he cooperated by not giving bad news in his flowery shirt.

SongkranShirts
I still don’t now what is causing the spinal pain which has been troubling me recently, but a bone scan has ruled out metastasis to my bones.  Causes could be an old injury, calcium depletion (thanks to cancer meds) or old age.  Onc suggests old age.  I high five him.

Hence the hair cut. I never get my hair cut before hearing the NED words. NED – No Evidence of Disease. A haircut is an acceptance of NED. An acknowledgement that there is no imminence of nasty treatment.  Treatment which might cause hair loss.

As always, my preferred way of processing this mess that goes on emotionally is by writing it and there is a heap of blah coming in this space.  I have been scrawling in freehand in the waiting room, in my room at night and even in Starbucks after the injection of radioactive dye before the bone scan. Those scrawls capture what happens in a mind which does not know what the future holds.  They will be shared here very shortly.

But for now, there is no bad news. Just a very long overdue haircut and a Doctor in a flowery shirt and big smile.

Happy Songkran, Pi Mai and Thingyan Water Festivals to all.

Metastatic Breast Cancer Awareness Day

A reminder – October 13 is National Metastatic Breast Cancer Awareness Day.

October 13 is the ONE day of the WHOLE Breast Cancer Awareness Month that calls attention to those who have died (40,000 annually) and the 150,000 LIVING with this incurable disease in the US.

Here are some important facts from: http://mbcn.org/…/

13 Facts Everyone Should Know about Metastatic Breast Cancer

(click HERE to download a flyer you can print and distribute)

1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

7. 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.

8. Young people, as well as men, can be diagnosed with metastatic breast cancer.

9. Like early stage breast cancer, there are different types of metastatic breast cancer.

10. Treatment choices are guided by breast cancer type, location and extent of metastasis in the body, previous treatments and other factors.

11. Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of their disease, some will live long and productive lives.

12. There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease is unique.

13. To learn more about National Metastatic Breast Cancer Awareness Day on October 13 and to access resources specifically for people living with metastatic breast cancer and their caregivers, visit www.mbcn.org.

 

Unbelievable.

It takes quite a lot to rev my temper engine, but this is beyond my comprehension. Offensive, insensitive to the extreme and in my view, utterly useless.

Unbelievable

These are just a few reasons that this has incensed me:

  • October 13th is the sole day dedicated to Metastatic Breast Cancer, in itself woefully inadequate.
  • Many women have had surgery which means that not wearing a bra is in the least extremely uncomfortable.
  • Many of us are trying to hide the fact that our surgery brings significant asymmetry – not wearing a bra would be excruciatingly embarrassing.
  • Most surgery for breast cancer brings pain and often considerable restriction in range of movement.  Waving your arms in the air (as in the image above) is another indication of how far removed this is from reality.
  • What about men?????

So, what on earth could not wearing a bra for a day possibly achieve? 

Not awareness. Not respect. Not much needed research. Not action.

And certainly not a cure.

Different shades of pink

When it comes to Breast Cancer Awareness Month, I find myself confused and conflicted. I have been kind of sitting this one out this year.  I read and take on board the apparent hi-jacking of the ribbon, particularly in the US and the contradiction in the small amounts of proceeds going to breast cancer work, in particular research into metastatic breast cancer.  At the same time, my heart is incredibly warmed by close family members supporting pink ribbon ventures and adventures. I hear the arguments that in some contexts, there is inappropriate marketing and commercialisation.  I believe it is not an “either/or” situation or awareness versus research.  Until Breast cancer touches us, we tend to close our senses to awareness.  Added to that, it seems that there are huge swathes of populations the messages
do not reach or choices are not there.  Equally, there is a glaring lack of research around metastatic breast cancer (MBC).  I am woefully uninformed about research into MBC, particularly over here, so am not going to even attempt to discuss that.

But I want to focus on where I am, right here, right now and share some thoughts and observations, purely on awareness and its connection to pink. There is already more than enough for me to say about basic and real awareness.

I flagged down a taxi outside the hospital in Bangkok on Day One of the checks, to head back to the hotel.  The taxi was bright pink.  Now actually that is not unusual as many taxis in Thailand are pink.  Some are green and yellow and a small number are blue, orange or other colours.   But the majority, to my eye seem to be either pink or green and yellow. However, what struck me particularly about this taxi, was the upholstery which was a bright shocking pink!  That is far less usual.

Having just drawn away from the hospital doors and their Pink October campaign, and being surrounded in the blogosphere by a range of views and discussions around pink and the pink ribbon, my mind was swirling in confusions and associations.

Pink is a very auspicious colour in Thailand, and I would be very surprised if the first meaning associated with the colour is anywhere near breast cancer.  People wearing pink t-shirts can be seen in swathes in Thailand,  as a sign of support and respect. So in Thailand, pink already has differing significance and there is a wealth of pink in sight.   In terms of Breast Cancer Awareness, there is a level of pink ribbon presence, but I have yet to see inappropriate or broad sweeping pink ribbon marketing.

Then something interesting happened.  In my bonus days in Bangkok, for the extra scans and work, I escaped for some numbing, only-looking shopping time to one of the big malls. My eye was caught by a card display, with lovely geckos on the front.  The cards were printed in brightly coloured, good quality paper.  Each set came in a grouping of five colours.  Of course, including blue.  So one of the five cards in the set was the most beautiful image of a group of very feisty blue geckos.

I had to have a set. I took them down and examined them, with their lively colours, heaps of attitude and little gems to accentuate the artwork. And then I saw this:

“Supporting Breast Cancer Outreach Projects”

You have to remember that I live in an environment where there is little “pink ribbon” marketing, so to see this was incredibly warming.  Not to mention, uncannily pertinent! This does not appear to me as commercialisation or exploitation of the  pink ribbon.  Jaab is a fair trade company and a proportion of the proceeds go towards a variety of Breast Cancer Projects.  In particular, there is a focus on outreach work for women in marginalised or difficult circumstances.

My views on pink ribbon marketing are no secret, and not exactly mainstream.  More like slipstream.  I am keenly aware that the marketing seems to exist in extremes around the globe.  Here, awareness seems to be much more tightly linked to the pink ribbon that it does in more commercialised contexts.

After the checks in Bangkok, of course, I returned to Yangon.  I have already written a fair bit about the void there is here in terms of awareness and marketing.  It is not my intent to repeat what I have said earlier, but rather to add to this. I ran a short session earlier this month with a group here and showed the pink ribbon as part of the introductory discussion. Not ONE single person knew its association / designation of breast cancer. Not one. I knew awareness was in a different place, but this really shook me, and shows just how incredibly inconsistently the pink ribbon is known and used around the world.  We went on to discuss some basic awareness including signs to have checked, and again talked explored beliefs about causes and risk.  Many believe that wearing old and tight underwear is a cause, and that it is a disease which mainly affects unmarried women.  For me real awareness is just that. REAL awareness.  And it is so important here, for example, where much is very different, yet the disease impacts cruelly and indiscriminately.

My plea is simple.  All I ask is that we remember that awareness varies enormously, as does the use of the pink ribbon and merchandising.  There are so many different shades of pink.  And perhaps we can learn about different ways of balancing marketing with awareness raising from unexpected sources.

In a scary space – the details of the past days

Pre-script/spoiler alert

As promised, here is the detail of this latest twist in the tale.  I particularly wanted to provide the previous short post, to share the news promptly that the investigative tests had been clear.  This is absolutely not intended to bring concern or suspense, but rather to document and probably moreover, process and offload, download and upload the events of this week.  Hence the “spoiler alert”.  There is no bad news in this post.

While I was waiting for the bone scan, I had two hours to wait after the radioactive dye was injected.  I sat down with my laptop and hammered away at the keys, just banging down what was going on in my head.  Looking back, it was just like being in an exam, that sense of purpose and pressure as the words flowed.  The following is what I wrote during that time.  I have tidied rather than edited, so it does come across as rather messy and lurches from big serious thoughts to the utterly trivial.  I did not want to re-work this apart from correcting errors and clarifying aspects which in hindsight might be inaccurate or unclear, because it is a snapshot of where my mind was right at that time, when I did not know.  I have added this pre-script and a post script to situate what I wrote while in that scared space.

I am sitting writing this while the radioactive dye does its preparatory work.  Ironic as I am “dying” to know what the bone scan is going to reveal.  Dying to know that I am not stage 4 and not in a inevitable process which will ultimately lead to my body dying.  And my mind, although not for as long as I can keep my hands on it.

When I am worried, I tend to retreat into myself.  Contradictorily I crave support and reassurance, but something inside me retreats and works through whatever needs to be worked through until there is at best reassurance and relief and at worst clarity on where I’m heading and what options there are.

And that is the space where I find myself right now.  Usually I don’t write about this, either on the blog to the wide (wide blogging anyway) world, but also not really to family, friends or colleagues either.  Since my original diagnosis in 2009 when I told hardly a soul, I have developed a slightly more “let’s not tempt fate” approach to follow up tests and usually share a concern or worry if I have one.

I approached the tests this time with a slight sense of complacency.  And that was thanks to the CT scan I had had in July at the time of the Pulmonary Embolism.  Dr W2 had reviewed that CT scan not just from the perspective of the clot, but also (and particularly I suspect) through his oncologist glasses.  He told me that the CT scan gave no indication that cancer was a factor in the pulmonary embolism and lung/ chest trouble.  What a huge relief that was.

And so this has been not so much in the back, but very much in the forefront of my mind.  If there was no sign of anything worrisome back in July, then surely things have a better chance of being ok through these results.  Surely.

Having the Big Annual Checks so soon after the PE episode added to this complacency for sure, although I would not be me if I was not anxious and worried about the checks.  That is the way I rock and roll.  I am the Worry Queen after all.

The checks had to span two days as the number of specialists (aka superheroes) I see increases with each extra bonus “thanks to freaking cancer” condition I collect as time wears on. So on Monday 8 October I presented myself at my second home, Counter No 2 so that the process could begin.  I had to ensure that the staff knew to take all the blood they needed for all the docs – I have a range of checks including the usual full blood counts, thyroid monitoring, glucose, kidney function, liver function, INR and clottery levels, hormone levels and of course the scary old tumour markers.  To name but a few.  A few phone calls confirmed the final count and several vials (felt like litres) of blood were syphoned off.  (And they seem to be surprised that I am mildly anaemic when I am constantly being bled?)

I then had a couple of hours before seeing Dr M, the latest addition to my A team – my cardiologist, who was enlisted at PE time.  That permitted time to run out and undertake a rapid procurement of a couple of new swimsuits.  All this daily swimming is resulting in perishing swimsuits so replacement was getting urgent.  Before very long I was back at the hospital and waiting for Dr M.

He was happy with my results, and paid particular attention to the  INR result (my blood needs to be in a specific range, knows as the therapeutic range) while I am on warfarin for PE.  The result sat comfortably in the range and he was happy with that and the reasonable stability of results since returning to Yangon.  He was very happy with liver, kidney, thyroid and the other results that he was interested.  He will review how long I will be on warfarin, but we are still talking at least 6 months.

As he turned the page for the final results (which he was also happy with), my seasoned eye sought out the tumour marker results, as I know where they are on the page, and I know the reference ranges by heart. (no pun intended, siting in a cardiologist’s office!)

The CEA was comfortably in range at 3.62, but my eye was caught by the CA marker which has a reference range from 0 – 22.  This one tends to vary a bit, although it did reach 26 once which totally freaked me out, but it tends to be late teens early twenties.  Yesterday the figure of 30.2 screamed out at me. Now of course I am no expert, and much as Captain Paranoia is instantly leaping around me, jabbing his finger at the number and generally “high-fiving” around the room, I knew that his mischief was premature.  I asked Dr M and he said that this was not his area of specialism and that Dr W2 and I should talk about this.

So that was the start of the worry kernel planted in my head.  Dr Google’s advertising campaign sprang into action and for once I ignored it. I don’t want to hear his unreliable scaremongering.  No point in adding to my sleepless night with more scary thoughts.  I know his tricks.  Unfortunately this is one of his super-busy bonus seasons with all the “awareness campaigns” so the fact that has given up on me for the time being is more likely to be an indication of how busy he is rather than a shift in my own mind!

Of course, the tumour marker nagged away at my mind all night and I did not have a good night’s sleep.  I also had my range of tests due in the morning, so was generally cranky and nervous.  I was scheduled for mammo, ultrasound of breast and upper abdomen as well as X-ray.  No CT scan thankfully, as I hate them, really hate them.  Unfortunately the instruction to fast for the ultrasound had not reached me, and I had provided my bloods the day before after fasting so was surprised to learn that I should not have had breakfast.  This prolonged the scanning timetable as I had to return later for the abdominal ultrasound.

Finally, the scans were all done, I was well and truly squished and scanned and waiting nervously outside Dr W2’s room.

Dr W2 is a hero. He was happy with the mammo, X-ray and ultrasound results and said I was looking good.  We talked about the warfarin briefly, and then I asked about the elevated tumour marker.  His words of response were:

“That is a concern I have”.

GULP!

Those are NOT the words I wanted to hear.  I wanted to hear his usual “pah”, with his reassurance that there was nothing to worry about. That is the deal – I worry, and he reassures.

Next was the physical.  This was a bit different.  More checks, different prods, including the lymph node areas.  And different questions.  Have I noticed any unusual pain?  When was I planning to return to Yangon?

I really didn’t like this change to the routine.  Alarm bells were clanging loud and clear.

After the physical I sat back down and he started to go through a plan.  He talked about the Femara switch and if that was working out ok. Then he said he wanted to re-run a CT scan.  Mainly for follow up of the embolism.  Oh the dreaded CT scans, how I hate them.  I had thought with all the scanning and monitoring of the morning that those bits were done. 

Then he hit me with “and I will send you for a bone scan”. 

A bone scan??  What The What is that about? 

I should know better, that if you ask a direct question, especially to Dr W2, you need to be able to handle the direct answer.  I don’t think I was.

Is that to do with the Femara?”  I asked, knowing that Femara is more aggressive in depleting calcium in the bones.

“No” he said.

“No, we need to see if there is any cancer in the bones.  With your type of cancer, metastasis to the bones is more common than in other cancers”.

GULP!

“ Once you have had the scans, then come right back and see me.”

I was utterly stunned.

Appointments were rapidly scheduled, and the CT planned and carried out a couple of hours later.

The bone scan cannot be done in my hospital so I have returned to Wattanoosooth Cancer Centre of Bangkok Hospital where they have the radiology facilities for the city. 

And that is where I am siting right now, after turning up this morning and being seen almost immediately.  The radioactive dye was injected gently into the back of my hand and I have been asked to return in 2 hours for the scan.  This is a living nightmare.

I knew I would need a bit of help with this.  I joke that blogging is my Xanax, but when push comes to shove and I am at my wit’s end with worry and fear, then Xanax is the only thing I can think of that will do the trick.  I had already left the consulting room yesterday, but knew I needed something to lean on so asked Dr W2’s lovely assistant if I could ask Dr W2 for some Xanax.  A strange interaction ensued as she popped her head into his room.  Yes he would give me one Xanax for the scans.  ONE XANAX???????  I need a wheelbarrow full to get me through the next few days I screamed silently.  I’ll give you a strip of ten, he said, seeing my face.  Success.  Plenty to tide me over.

But blogging or writing is still my Xanax and that is why I am sitting here right now, battering away at the keys while the radioactive dye does its work and I wait for the two hours before the scan itself starts.  I think the Xanax is probably doing its work too as I think it has taken the edge of the extreme nervousness about the procedure itself.  It hasn’t taken away the fear, though nor has it prevented my mind rattling all over the place and heading in so many directions.  I know that this scan is specifically to investigate whether or not there is any sign of bone mets.  My mind leaps from the optimism that this will be fine, that there is only one raised marker, no other signs or symptoms.  To the scenario that the cancer has metastised to my bones.  And onwards to the bonus scenario that whether or not I have bone mets, that might perhaps mean that other organs could be affected, which is even more frightening.  Perhaps there is an entirely innocent explanation to the marker.  But deep down, or not so deep down I know that markers are less reliable when report low levels rather than high levels.  A raised marker is less likely to have a benign cause than the reverse.

This takes me right back to the space I was in just over three years ago.  After Dr H had told me that I should have the “asymmetry” investigated in Bangkok.  I remember veering from “I’ll be fine, there’s no history of cancer in our family and it just can’t be” to “if this is cancer, I will not let it take me, I will fight it and win” (oh the naivety) to “this is cancer, there are too many “let’s get worried” boxes that are ticked by my presenting symptoms.  I am afraid, how long do I have?  I could be gone by Christmas”.  Oh this is all so startlingly familiar.

My head is in such a similar space just now.  Part of me is optimistic based purely n the fact that the “only” alert has come in the form of the raised tumour marker.  And hey, it is not THAT raised.  30 is not so high, it is not in the hundreds.  And it has been 26 before and gone back down.  And that was also in October.  Must be something to be with stupid Awarenss Month my friend and I “rationalised”.  Based on no rationale whatsoever.  A bigger part of me is facing the fact that there cannot be many benign reasons for the marker to be raised.  And that is where my mind keeps returning.

The thing that terrifies me, apart from facing acute treatment again, management rather than cure, no end of the treatment this time, is about my future.  I cannot see it being possible to continue working with stage 4 cancer, overseas and in humanitarian and development work.  So what on earth do I do?  We would, in all likelihood have to relocate to the UK, and after 12 years in Asia that would be a massive change, even without the prospect of investigating how to get treatment and care in place.  I would have to set up home again in the UK, and what about all the paperwork and documentation to ensure hubby J could also relocate.

It is all utterly overwhelming. What the on earth are my options, what am I going to do in every sense.

As my mind continues to hurtle in all directions, I try to stay in charge of it.  Undoubtedly this will continue, and intensify until I see Dr W2 again.  At that point I know there are likely to be a few possible scenarios

  • Bone scan is clear.  High fives. Tears.
  • Bone scan shows clear metastasis and we will be looking at diagnostic investigations to identify treatment plan. Get hubby here pronto and speak with family.
  • Bone scan clear but signs of other worrying stuff going on elsewhere in my body.  Needs more investigation.  Biopsy etc. Tensed jaw, questions, trying to remember the answers to the questions which I must not forget to ask.  Get hubby here pronto and speak with family.

How can I tell my family?  What words will I use?  How much should I forewarn them that this bombshell could be coming?  What do I do about the visitors we expect in 3 weeks time? What about all the Big Stuff going on at work, the major project just approved after two years work?  All the changes going on around us?  How can this be happening now? What about my new bike?  Can I ship it to the UK if needed?  How long will I still be able to ride the darn thing? What about my hair?  No point in booking the cut and colour I had planned.  And the birthday thing?  My mother died on her 65th birthday, and my step mother on her 75th.  Am I going to die on my 55th birthday?  How do I tell everyone if the scan results are bad?  When should I start to make a list of those to phone, those to email and start on that dreaded “bad news” blog post…….

If it is in my bones, then I am stage 4, pure and simple.  If I am stage 4 then we are talking treatment and management rather than cure.  Not beatable, but treatable.  And that is the thing.  Treatment of Stage 4 (from the little I know) is about management, finding the option which best delays or slows progression of the disease.  And that treatment just keeps on going as long as it works.  8 cycles of chemo felt like a lifetime back at diagnosis time.  But there would be no more being able to count down towards the end of chemo, this is quite literally chemo or other treatment for life.

Writing this, has helped somewhat to control my mind and organise my thoughts.  I am still overwhelmed and terrified but the two hours has almost passed as I have battered out my thoughts.  Writing and Xanax, working in harmony.

Time’s up. Now it is time, time to enter the scanning bunker and do the tests which will determine my immediate future.

Post script

I found the scan was much easier than a CT.  Perhaps that is in part thanks to the Xanax?  For half an hour I lay, swaddled in a blanket and my arms held in place by my side while the scanner moved around silently and unobtrusively around me.  I probably drifted off.  My mind was nowhere in particular.  I was in a very different zone.  I was a passenger.

After the scan, I was taken back to the changing area, but on the way the technician asked me if I wanted to take the report with me.  If so, could I wait for half an hour.  Of COURSE, I wanted the report.

I replied affirmatively, but emphasised “I will read it if I have it, perhaps my Dr would prefer to go over the results with me?”  However, I knew that I would take the report with me, and read it no matter what it said.  I HAD to know.

I returned to the changing area, which was actually a small bathroom.  I took my clothes from the locker and placed them on the side next to the sink.  As I removed the gown, I heard a brrr, brrr noise, and turned round just in time to see the automomatic soap dispenser beside the sink, happily dispensing soap onto my clothes.  I returned to the waiting area, shaking and with the remnants of liquid soap all over my blouse.

It did not seem like very long at all before the technician returned. I could feel myself struggling to keep it together as she handed me the envelope.

I repeated.  “I am going to read it”.

She said, it’s ok, you can read it and take it to Dr W2”.

Reading the words, seeing the result brought my guard down and I completely crumbled in the waiting area, weeping and clutching my reprieve.

This feels like a huge overreaction, now with the results and the reassurance.  I know that compared with so many I am hugely fortunate.  Not only did I have clear results, although the tumour markers will be monitored more frequently over the coming months, my nightmare was so much shorter than is often the case.  They might have four of the longest days of my life, but it was all done within those four days.  From the initial bloods, seeing four consultants, mammo, ultrasounds, CT scan, and review it took just over four days.  I cannot imagine the anguish that protracted investigations cause and I know I am lucky.

Of course there were no high fives in Dr W2’s office.  I know it doesn’t work like that.  More a sense of numbness, physical exhaustion and utter emotional depletion.

However, one comment on my last blog posting said it all.  “We get it”.  Yes, my results were clear, yes everything was done quickly but look at the emotional and psychological torture we go through to get there.  And there is no point at which we can say that we have absolute relief and reassurance.  Because it is only valid until the next round of tests and checks. Yes, as my blogging  friend said “we get it”.

That is my validation and reassurance of my reaction to this whole experience, and even although it has been over  only four days, it is massive and a Very Big Deal.