Skygazing

I never tire of gazing upwards. Every sight is different. Stars may be set in well known families and formations, documented on parchment,  yet each viewing of the night sky is different. Clouds and moodily lit skies tell new stories with each breath of air.

The skies remind me that despite our belief otherwise, individually we are tiny and insignificant. Despite what we are doing to the planet as a race, we are almost non existent in the face of the elements.

Recently I was returning from Bangkok from my last round of medical checks, and as always opted to sit in a aisle seat. Those monsoon flights may be short but the rain and attitude-filled skies can be alarming to fly through. Better not to look at those clouds too closely as we fly through them.

My late afternoon flight was approaching Yangon, and I could see that the the cabin was taking on a golden hue.  Appropriate for arrival in the Golden Land.  I glanced across the empty seat beside me past my fellow passenger at the window seat and was immediately captivated by the skyscape outside. There were layers of cloud, and the setting sun reflecting on the waters far below of the Gulf of Martaban, the northern part of the Andaman Sea.

Automatically, my hand was reaching into my bag for my camera to capture the magic in front of my eyes.

Whereupon I came face to face, quite literally, with a bit of a challenge. In the form of the passenger across the empty seat, who was comfortably eating her spicy Thai in flight meal in her window seat. It is impossible to be unobtrusive in these situations, but I did try, leaning over and angling the camera so that I did not capture her shoulders and noodles. She also looked up and snapped some pictures on her phone.

Within a few moments, the scene had changed. The light had altered, the reflection dimmed and the other-wordly scene outside taken on a much more familiar look. By happy coincidence, and the good nature of my fellow passenger, however, I had been able to capture and preserve the sight.

aviation sunset oct 2015

It has been a while since I have changed my background image here, and photograph of that moment provides just the right opportunity to change that right now, and share that moment right now.

In these days when we stare into our phones and devices oblivious to our surroundings, there is a stronger reminder than ever to pause, look upwards and drink in the free, ever changing moving pictures in the skies above us.

Lymphoedema? Seriously? Life following diagnosis is just not that simple……

Recently many changes in my life have been underway. One major change which has impacted significantly on me had been the closure of the place where I have been swimming in the mornings. I knew this would be tough, but it has had even more impact than I had expected.

The facility closed to members on July 1 but I was soon on home leave. Furthermore, rainy season always disrupts swimming plans. Every night my ear is always keenly listening for the sound of rain through the sound of the fan. If the rain is heavy, the swim is postponed. Sometimes a full week of postponed swims passes in rainy season.

yangon monsoon

 

Aung Min Gaung River 1Now that the rains are starting to abate, I should be able to swim more often. I need to make plans.

But the gap this year has been too long. Very few swims in too many weeks.

Over the past weeks, I have also been experience increasing pain in my left arm. Twang Arm. I mentioned this to my Doctor here in Yangon and he told me exactly what I did NOT want to hear. What I had not even told myself.

Just a few weeks before the 6th anniversary of my mastectomy and the grand removal of all lymph nodes in my left arm I  developed lymphoedema. These are not my arms, but a stock image of what it looks like.

lymphoedema

Seriously?  Yes, seriously. Sad Face. Angry Face.  ARE-YOU-KIDDING-ME? face.

I am pretty certain that there is a direct relationship between the lack of swimming and the intrusion of this unwelcome bonus condition.

So I am on a quest. As the rains abate, I am seeking out another option. You have to factor in a house move to my recent changes, so I am also testing out new geography and facilities.  I have already checked out one place and had a test swim. This is not quite so easy to get to, but it is a possibility. There are two great pools, a 30 metre and an 33 metre pool. I do not think there are any kingfishers and it is a great deal busier but that is life.

I have always been convinced that the almost daily swims from very soon after surgery, really played a part in keeping lymphoedema at bay. Now I am going to see if I can reverse this and at the very least prevent it from getting worse. It is mild at the moment, and I must stop it from getting worse. Oh and does anyone have any idea where and how I can get a lymphoedema sleeve in Yangon?

lymphoedema sleeveAs October advances with its array of messages around Breast Cancer, I want to add my own message, which is “it just isn’t that simple“. I am happy to be living with NED and want to stay that way, but life after diagnosis just is not that simple. Lympoedema is just one more bonus in the post diagnosis life, as I have discussed before. Thanks but no thanks cancer, indeed.  These bonuses include:

  • A digestive tract which remains sensitive following the ghastly gastric effects of chemo.
  • I have difficulties with memory too, my personal memory card is none too reliable and has particular dislike for. This is linked to  “chemobrain”- a level of cognitive impairment “thanks” to chemotherapy which is now more recognised and understood to be very real.
  • The pulmonary embolism which tried to get rid of me in 2012, and for which I still have to take blood thinners and undergo regular checks.
  • The failed thyroid, which again needs daily medication.
  • Peripheral neuropathy in toes and fingers. Not severe but enough to affect mobility and make me walk clumsily to make others notice. Enough to make me trip and fall too regularly.
  • Brittle and constantly breaking nails
  • Highly sensitive skin – which cannot tolerate sticking plaster or bandaids (depending on the part of the world you come from 😉 ), and which can sense the presence of a stray hair through several layers of clothing. This includes the extremely sensitive soles of my feet
  • Excruciating night time, and other time cramps.
  • Last and in no way least, is Twang Arm which remains seriously corded and which is now clearly laughing up its lymphoedema sleeve.

Again, I need to respond by stepping up my game and squaring up, no matter how exhausting this is.

I am not afraid to shout out that I HATE cancer, I HATE the way it continues to sneak in surprises and knock you when you are still getting getting back to your feet.

Life after a diagnosis of breast (or any cancer) just is not that simple.

Friday 2 October

Friday 2 October 2015

I’m in Bangkok, having just gone through the Big Checks. I’m exhausted. Utterly drained, numb and emotional. I struggle not to cry.

Friday 2 October 2009

I was in Bangkok, having arrived from Yangon in the afternoon and going immediately to the hospital from the airport. I was exhausted. I had not slept properly since I had found that lump and been referred to Samitivej Hospital. I was terrified.

Friday 2 October 2015

Bloods first. four large vials, all with my name on the outside, colour coded for each type of test. A bit of a struggle and fiddle to persuade the vein to cooperate, but it yielded fairly quickly. These phlebotomists are highly skilled.  I hate needles and blood takes, but nowadays I hardly flinch. If I could count the number of needles which have pierced my skin to draw blood…. Next, through to Imaging and changing into a fetching blue gown.

I was handed a locker key, and found that I could not reach the locker. Rather than ask for another locker, I threw my clothes upwards, using the non Twang Arm. First was the X-Ray. Always quick and not uncomfortable. Next was mammo. “Right breast first” said the technician. “Right breast only” was my reply. Less comfortable, squeezed so tightly I felt that my breast might not be able to hold its contents under the pressure, but happily it did. A couple of different images in different angles, and in no time I was back in the waiting area.

Friday 2 October 2009

The flight was a little late and the traffic from the airport very busy, so I arrived late at Samitivej. I was met by our Liaison Manager and ushered immediately through to the Imaging Centre. At some point I must have filled in some paperwork, but I don’t recall that right now.

I had never had a mammogram. I had no idea what to expect. I knew it would be uncomfortable, even painful. I was in that room for heaven knows how long. I moved, for new images at different angles. I heard “calcifications” and thought that was a good sign. I have no idea when I was finally released from the mammogram room but eventually I was.

Friday 2 October 2015

Next was the Ultrasound. I hate this one. I freaks me out, quite simply. I hear the beeps as shapes are pegged and even though there is no visible screen, I am straining for hints. “You remember me?” states the Doctor. Yes I do. I think. I think she was the Ultrasound Doctor last year. The one who asked me if I was seeing my Doctor that day. I remember that freaking me out. “Yes,” I smiled. I remember.

Again she asked me if I was seeing my Doctor. I reassured that I would see no less than Three Doctors. Is this normal or something to worry about, I wondered. Silence and beeps. Gel everywhere. Too much attention under my right ribcage. There’s something wrong.

Suddenly and abruptly she stands up. “Finished” she announces. A good sign or a bad sign, I wonder?

“I will send my report to your Doctor”. she says as she is leaving the examination room and I am being cleaned of gloop. More worry. What is there to report???

Friday 2 October 2009

You know when there periods in your life that you play and replay, on a loop? The Ultrasound is one of those times. I will never forget that Ultrasound, the drawings, the straining for clues, the clinging on to hope and the devastation and denial combined when I saw the Doctor key in ” M _ A _ S _ S ……  N _ O 1…..

Here is how I captured it at the time

Next was ultrasound.  Again the investigation was very thorough.  This time though I could see the screen and all sorts of weird ghostly shapes as the doctor methodically worked her way through the process. Again, I tried to pick up clues and hints and soon got a big one  “left side – problem”, I was told.  Hmmm.  The chittering started again, perhaps helped by the Air Conditioning and the cold ultrasound gel. “You need biopsy”.  Oh dear – more chitter chitter!  The technician was lovely – calm, professional but clear.  I said I was worried and she told me not to worry (lurch of hope) – my Doctor is a great specialist and I am in the best of hands.  She then started pegging the dimensions of what she was seeing in the scan.  I had to watch, but kept looking away as she pegged a strange shape and clicked to save it.  Then my stomach turned as she keyed in – m-a-s-s-.  That is a clue, and not a good one.  She didn’t stop there – mass.. n-o- 1.  I closed my eyes and swallowed. There is more than one lump.

I think it was around then that the specialist himself appeared, his Bluetooth flashing in his ear, and he joined the party.  Or maybe it was a training workshop because he had a magic marker in his hand and methodically they started to draw on my chest.  I started chittering again – actually I am not convinced I had stopped.  They reassured me that they were not going to hurt me – just draw on me!  These were the markings for the biopsy.  Another worry lurch when I was asked if I had eaten – surely they are not going to operate tonight?

Eventually the drawing was complete, the ultrasound images all recorded and I knew that the time was coming for biopsy and diagnosis.

Friday 2 October 2015

Waiting, waiting, waiting……

The bloods are taken and have released their secrets to the Doctors. I have no idea what messages they tell.  I have to wait. And wait. My Blood Pressure, weight and temperature are taken. I have lost another few micrograms, half a kilo. That is good, all things considered.

My Blood Pressure though is sky high. I am stressed. By too much. There is no hiding this fact, my BP does not respect secrets or confidentiality.

Twang Arm is complaining. And hurting. And the wait is tortuous…..

Friday 2 October 2009

Dr W had joined the discussion in the Ultrasound room. I remember his bluetooth. I remember him arriving at the door and say “Khun Philippa?” I remember a lot of conversation in Thai and a great deal of marker pen.

I remember being afraid, but thinking that this cannot be cancer. There is no cancer in my family…. 80% of lumps are benign….

Friday 2 October 2015

Finally, the appointments are looming. Dr A first, my endocrinologist. I still don’t really what one of those is. But I do know that Dr A looks after me. He understands and offered suggestions when I dissolved in tears at the last consultation. Today, he goes through my results.

My blood sugar is ok, slightly down from last time. Down is good. Really good. I am breaking the trend, and I want to keep doing that. Cholesterol is good. Kidney and liver functions are also good. He moves briefly over my tumour marker results. They are consistent and show no increases. That is good. Very good.He is happy with my minimal weight reduction, and understands my frustration at not being able to swim. Before we know it, I am saying goodbye for the next few months.

I sit down in the waiting room again. Next is Dr W2 my oncologist. Within a few minutes though, I am waved through to go and see Dr W. Dr W2 is running late? I don’t know, but I head through to the other waiting area. Dr W no longer consults in Room No 59 but that is ok. His current room has been auspicious so far.

Dr W welcomes me. How are you? How is Yangon …. Many questions, and then “How many years now…”

“Six years” I tell him. “Six years. Can you believe it?”

I am not sure if he can or not.

I tell him that Twang Arm is causing me grief. Not too much swelling, he observes, but a bit.  Lymphoedema. After so so long. So unfair…. I tell him of my challenges in finding a new swimming space. He encourages me to find such a space. I will…. I promise to myself.

He reviews the results. He ordered the mammo and the ultrasound. He is happy with the results. Nothing sinister.

He then asks when should be the next appointment. I don’t want to say, I want to be told.

“A year?” he asks? My heart lifts and I look up expectantly. “”Too long?” he enquires. Perhaps he is taking my reticence for the need for more frequent review.  I SO SO badly want a review in one year. What a statement of recovery that would be. “It’s six years now” he adds. When will you come back? I reply that I do not yet know, that Dr W2 will make a suggestion or decision. “One year is fine”, he tells me. “but if you come back before then, please come and see me too”.

So I know. One year is fine, but if (and I know that it is highly likely that Dr W2 will request a return presence in either 3 or 6 months) it could be sooner. We settle for an appointment when I next return.  I am enormously heartened by the fact that he is happy to see me n one year. ONE YEAR. That is MILES away.

I return to the waiting area. Dr W2’s PA realises that I am there.  She ushers me in to his consulting room. I am fairly relaxed because by now I have learned the results of the Ultrasound, mammogram. I know that there are no surprises, My mammo result is good  (Birads 2 no less. Why, Birads 2 is classified as benign.) and bloods are fine. I know that my tumour markers are stable, my critical results are fine).

I complain mildly about Twang Arm. Twang Arm has already been well examined. Hmmm, is the  consensus. Lymphedema. Not welcome, but not sinister.

“How long is it now, since you were diagnosed” asks Dr W2. “Four years?”

Aha, no – no. “Six years tomorrow, I reply.

SIX YEARS. Six year whole years.

I have never, ever, asked how long I would have survived without treatment when I was diagnosed back in 2009. But something inside of me would like to know. One day perhaps…

Dr W2 has recalled me every three months for a while now, following the Pulmonary Embolism and some other glitches, so I await his directive anxiously at the end of the consultation. I silently plea that he will not call me back again in 3 months. So when he suggests that I come back in 6 months time, I am more than happy. Six months is a long way hence, and I am quietly delighted to have a longer breathing space,

Friday 2 October 2009

Dr W has explained the scans and Ultrasound to me. The calcifications are not innocent. They are worrying. He shows me the space ship. The shape on the screen with its irregular growing patterns.

“This is highly suspicious of cancer” he tells me gently yet irrecoverably.

Once you speak these words they can never be taken back. “THIS IS HIGHLY SUSPICIOUS OF CANCER… HIGHLY SUSPICIOUS……

This is cancer.

Yes, you are going to die.

That is all I can hear.

These are the words, once spoken, which can never be retracted.

“This is highly suspicious of cancer…. highly suspicious of cancer… highly suspicious…….highly suspicious………

Friday 2 October 2015

I realise it is my “Happy Cancerversary”

I realise that today marks six whole years since I heard those words. “highly suspicious… highly suspicious.”…

Six years ago, I slithered up to Shwe Dagon in the early morning, before my flight to Bangkok, to give blessings and, and to plea, nay beg that this wold not be cancer.

But it was cancer,. Despite all the odds.

And still, I am here., Six years ago, when 2 October was also a Friday and I learned that I was mortal and that I was not somehow protected from cancer.

October 2. Every year.

Yes, I often wonder how long my prognosis would have been back in October 2009.

I have never been able to ask that question. But I do know that I would not be here still, without treatment……..

Today, I AM still here. the path has been hard and gruelling but I am still here.

So, many returns then, eh?

tomorrow

October 2 – Happy Cancerversary!