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.

Advertisements

This is October too.

Today is October 2nd.

On October 2nd four years ago, I was holding my breath, pleading and bargaining with myself, willing the lump and asymmetry in my breast not to be cancer.

Late in the evening of October 2nd four years ago, I heard those words, those unforgettable words which can never be unspoken.

This is highly suspicious of cancer.

Today is October 2nd.  Today is my fourth cancerversary.  I have come a long way since hearing those words, yet too often I have no idea where I am.  I stand in a strange space, the ground underneath my feet seems unsure.  Words and emotions swirl around my head.

The cancerversary is a strange beast.  Not a day for celebration. Rather a day of recognition, quiet reflection and gratitude for a a present which is precious and fragile.

Misty Rakhine morning

The Winds of Change

The winds of change are definitely in the air.  The days are becoming drier, more sunny and very hot.  There is still a good amount of rain, some torrential, but the skies are looking different.  There are swathes of blue, punctuated by white, grey and inky black cloud formations. It is a beautiful time of year, the vegetation lush and rich from the rains but now set amidst bright sunshine and clouds with character and feist.

As I discussed in my last post too, it another season is newly underway.  Personally, it is my anniversary season.  In only two days time I will silently and sombrely recall the words which changed life forever for me and those close to me.  The “this is highly suspicious of cancer” words.  Those days were followed rapidly by surgery, pathology reports, chemo and all the attendant extras that these entail. It is a rough and stormy season and one which I will be glad to be on the other side of, just like a rough storm indeed.

It is also a season which is becoming increasingly divisive within what is a close and highly supportive online (and offline) community of breast cancer veterans.  (Hmm – apart from the war and fighting associations – I think I might prefer veteran to survivor as a term?  A veteran being anyone who has crossed over the “you have cancer” line….  just thinking out loud here).  The season is of course Breast Cancer Awareness Month (BCAM) – often called Pink October.  I personally believe, looking at this from a global perspective, that there is no right or wrong in terms of BCAM.  The context varies wildly and we cannot prescribe for another situation.  I very much disagree with hijacking a cause or issue for profit, but will never tire of trying to highlight the very different context here and the challenges for, particularly women, in the developing world.

Many winds and crosswinds are blowing during October.

So while these serious winds of change are sweeping through our lives, what better time to step back and refresh the visual image backing the blog.  This time I have selected an image from my travels again, but the elements which I wish to share are ones which are universal.  A sinking sun against a sky scattered with cloud formations, reflected on the water.  Foliage silhouetted against the darkening sky.  The mood of the sky captures the winds of the changing season and the promise of dry days and retreating rains.

This is the complete image, and very shortly (as connectivity allows) the image will appear as the background for the next few weeks.

Spooked at Halloween

Halloween is upon us, the time for ghosts and vampires, pumpkins and dressing up.  In Scotland there are a variety of traditional Halloween activities for children.  These include “guising” (a bit like trick or treat, this involves dressing up and going round the doors, singing a song, reciting a poem or telling a joke in return for money, monkey nuts and sweets),  “dooking for apples” (ducking into a basin of water to catch an apple in your teeth) and trying to eat a treacle scone dangling from a piece of string!  Our version of the pumpkin lantern is the turnip lantern, though thanks to globalisation and greater availability of pumpkins, turnips are seen less often than the  pumpkin versions.  And it is a darn site easier to make a pumpkin lantern – have you ever tried gouging out a tough turnip!

No Halloween is complete without ghosts.  Don’t tell anyone, but my hubby is afraid of ghosts.  I mean really afraid of ghosts.  I didn’t realise just how deep a fear it was, until one evening, when our conversation turned to ghosts.  It was a bit reminiscent of childhood when you tell each other ghost stores, and terrify each other but are still compelled to recount the scariest things you have heard.  Well hubby alarmed himself so much (and most of the ghost stories were his) that he was too scared to venture into the darkness of the bedroom on his own!  I had to go in advance and turn on every light possible.  And give the room a thorough checking over for anything spooky or suspicious before he allowed himself to be led there!


I realised, when living in Nepal, that hubby is not alone is this abject fear of ghosts, or “bhoot” as they are called across large parts of the sub continent.   In villages when I was travelling I was told not to go out at night for the paths were dangerous.  I thought they were warning me because the villages were on such steep landscape, but no, it was due to the risk of being accosted by  “drunks and ghosts”!  Across India and Nepal “bhoots” are highly feared.  Wikipedia tells us that Bhoots have backward facing feet, float above the ground as the earth is sacred, they cast no shadows, and speak with a nasal twang.  They often lurk on specific trees and prefer to appear in white clothing.  Often they haunt specific houses, often places where they were killed or which have some other significance to the bhoot.

When my sister in law came to visit us in Yangon she brought her Nepali fear of ghosts with her and expressed fear at sleeping in one of the spare rooms.  She was reassured in a highly matter of fact tone by our friend who said with surprise “Ghost?  But this house doesn’t have one”.  In Myanmar, there are Nat spirits rather than the ghosts we are more familiar with, and shrines are ubiquitous.  When we first arrived, the housekeeper in our interim staff house was glad to learn that we did not eat pork. She explained that the nat which lived in that house, did not like pork and if it was eaten in the house it would cause arguments.

I am probably less afraid than hubby of ghosts, although I do get a bit “spooked” with discussions or TV programmes about ghosts, the paranormal and such “other worldly” or apparently unexplainable phenomena.  But that fear is nothing in comparison with my number one fear.  The new one which came as a gift with my diagnosis.

The fear of recurrence.

This is something I discuss regularly, for example in this “Fear Factor” post.  Halloween might mark the end of the designated Breast Cancer Awareness Month, but it does not mean an end to the fear of recurrence.  Once diagnosed, every month is Breast Cancer Awareness Month.  For those living with metastatic disease, every minute of every day means Breast Cancer Awareness.   No matter how far we are from our diagnosis, fear is not far away.

It is sometimes hard for others to understand that fear is a part of our lives. This is not about attitude or being positive, it is a reality which we manage in our lives and balance with vigilance about our health.  It is not something which we can forget as we move out of October.

We all have fears.  Whether our fear is of ghosts, spiders, heights or metastatic cancer, that fear is real and valid.  No matter the basis, we have to respect each other’s fears.

Landmark days ahoy!

On the horizon, looming ever larger and seemingly gathering pace are a clump of landmark days just ahead of me. In the midst of these is the big landmark day, the strange CANCERVERSARY.  This is the term I keep hearing which denotes the anniversary of discovering you have cancer. In some ways I find I approach the day with a sense of eager anticipation as it serves as a reassurance that I have survived so far, as well as highlighting how far I have come since diagnosis. In other ways it is dreaded as it is an unwelcome reminder of the horrible cancer beast coming into my life, changing everything like an earthquake, causing the very ground under my feet to lose its solidity and familiarity.

In the approach to the landmark days, I remember this time last year that I was blissfully unaware of how much my life was going to change. I find it hard to imagine what it was really like then, as it feels impossible to rewind back to what it was like not to have been diagnosed.

The first of the landmark days will be on 23 September which marks one year from discovering the lump, and is rapidly followed by another important date which was when I consulted my Doctor here on 25 September. That saw the start of serious worry and loss of sleep as the possibility of the lump being sinister became firmer. There followed a strange week and a half during which I lurched between naive hope that there was an innocent explanation to the lump, and an aching pit of fear of the unknown if cancer was the cause of the lump.

There seem to be no Internationally Agreed Guidelines 😉 for designating the day of a Cancerversary. Some people choose the day of biopsy, some the day of diagnosis, some the day they discovered the sign or symptom which turns out to be cancer. I have chosen the next Landmark day, 2 October, as the day itself because for me it represents the day that everything changed.

October 2 is the day I travelled from Yangon with feeling sick with fear, and desperate for a sign of hope. It is the day I had the diagnostic mammogram and ultrasound. It is the day I met Dr W and he pointed out the spaceship like mass on the screen, growing irregularly in different directions. It is the day my life changed, when I heard those words “highly suspicious of cancer”. I have no idea how I will mark the Cancerversary and I have no idea how I will feel on that day.

The Cancerversary is followed rapidly by a number of other Landmark days. On 4 October I will remember a year earlier having to break the news to close family and friends and my work about the impending surgery and almost certainty that it was cancer. I think that was one of the most difficult things I have ever had to do.

The 5 October is the day of the surgery and an important Landmark day as that is when cancer was confirmed and the radical surgery was carried out. Any tiny flicker of hope that the spaceship might be innocent was gone that day. Twang Arm came into existence that day. Every time I look in the mirror I am reminded of that day.

Although I knew that the lump was indeed a tumour and that there was lymph node involvement, I discovered the extent of the pathology on the next Landmark day – 8 October when I learned that 6 of the 15 nodes removed had a presence of cancer. A few days later, on 13 October I further learned that there had been no spread and that my tumour was Grade 2, and hormone receptive. I had entered a whole new world of terminology.

On 15 October I met Dr W2. Naively, I had no idea at that time how big a part of my life his larger than life character would become.

The next Landmark day is 23 October when I had the first dreaded chemo. I was terrified of the thought of chemo, the chemo itself and its toxicity, of the side effects and of the procedure. I had been re-admitted into hospital for minor surgery and I remember spending most of that day dreading the time when the porter would come to take me for the chemo. Every time the door opened my heart jumped and my stomach turned over. I didn’t know whether to be relieved or disappointed each time a nurse or auxiliary came in. The porter did come, later in the afternoon, and I duly had the first dreaded chemo.

One of the most difficult days will be marked on 17 November, although it was not a day of pain or obvious trauma like the other days. It is the day I lost my hair and met Dr Evil, who was to live in my mirror for months. My hair is still shorter than I would have it by choice, so the realisation that I have had nearly 10 months disliking my reflection in the mirror hits quite hard.

This means that October will see a number of days which will very strongly remind me of what happened a year ago. It will be a strange time and the fact that the Big Check is following soon after means that I know I will approach these days with some trepidation.

It will indeed be Breast Cancer Awareness month!