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.

 

Now 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.

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?

As 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.

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A breath of fresh air

Words are still few, as I absorb the past days and weeks.  My break was just what the body and soul had craved.

I walked for miles in sleet, hail, sunshine and blustery wind, dined on freshly caught west of Scotland seafood in “Local Hero” style settings, found myself stranded “over the sea to Skye” when the ferry broke down, wandered along the silver sands of Morar, spotted seals bobbing around in the choppy waves in the bay and got lost on the highly straightforward circular walk around Mallaig.  And weirdly Twang Arm behaved, usually it squeals when I walk any distance, yet it seemed to understand that now was not the time to cause grief.  There was enough already.

Of course there are many photographs.  Many dreadful images as I failed to master the sophisticated functions of my fancy new camera.  Many images, ready for the delete button as I experimented with my new acquisition.  Being surrounded by such incredible natural beauty though, has ensured that there are some memorable images which I will organise and share these in the coming days.

Most significantly though, I was repeatedly made aware that I was surrounded by regrowth and renewal.  Tiny buds on the trees,  little shoots of grasses pushing through the ground, delighted white fluffy lambs appearing freshly laundered as they scampered around the hillsides, prolific spring daffodil bulbs and new wild flowers shivering in the winds.

Reminding me of the precarious balance that is life and death.

 

There’s more to Twang than Twang Arm!

It is another Big Landmark Day today.  On 5 October 2009, I had the surgery which would confirm the diagnosis of breast cancer which makes it three years since my mastectomy, three years of extreme lopsidery and three years since Twang Arm came into my life.

There is no love lost between Twang Arm and myself and not an ounce of respect afforded in either direction.  So I want to upstage Twang Arm in a mischievous kind of way today.

The idea came to me the other evening, when I was preparing to go to my writing group. We had set ourselves an assignment and (as too often happens) I was delving into my writing archive to find something to take along.  So often as the day of the group approaches, either I am scrawling away at the eleventh hour trying to finish it, or conceding that I have not created anything fit enough to share and digging deep to find something from past writing.  As I had been out of Yangon, in the capital the previous week and into the weekend I had had even less free time to write, and I resorted to the archive.  I went back a number of years, to my time in Nepal when I found so much inspiration around me, observing little snippets of ordinary daily life, and sharing this.  I was rapidly enveloped in nostalgia re-reading the writing and remembering those numerous moments.  Very like our recent “celebrating the ordinary” challenge which Marie of Journeying Beyond Breast Cancer laid before us.

And I found this poem below, which I had written years ago and completely forgotten about. Memories flood back of the Kathmandu streets and the calls of what I termed the Twang Man”  as monsoon retreats and the cooling temperatures of the approaching winter.

The man with the strange twanging instrument

Outside the bedroom window

along the busy path

of soft mud

swollen by endless weeks

of the season’s monsoon rain,

the morning traders pass

calling, singing, tempting

all to trade with them

Wheeling bikes

laden with fruit, vegetables, fish

to sell.

Bamboo mats, rice nanglos

small matted stools

for us to buy

empty rice sacks, bottles

to collect for a few rupees,

pressure cookers, gas stoves to mend.

A new noise

unfamiliar

competes with their calls

Twang! Twang! Twang!

Who is that man?

What does he carry

against his right shoulder?

A strange wooden object

with a music like string

which he plucks at

as he walks silently

along the lane

Twang! Twang! Twang!

Soon he is seated

in a neighbour’s yard

silently, patiently teasing

the wool filling of the winter quilts,

freeing them of their dampness

brought by the summer’s rains,

repairing them for the coming cold

readying them for their winter work

protecting young and old alike

from the penetrating night time chill.

As the rains slowly come to an end

the man who brings the twanging sound

visits so many streets, yards, homes

silently patiently

day by day

as the skies become clearer

and the cold creeps daily closer.

His work ensures that

each family will sleep

in the warmth and comfort

of the freshly repaired quilt.

In these short autumn weeks

shawls, woollen hats and socks

slowly appear on the city folk

as he readies them

for the night time cold.

In these short weeks

he must earn

enough to feed his family

for the coming months.

Outside the bedroom window

along the busy path

of dried, cold, dusty earth

cracked by daytime sun and night time chill

the morning traders pass

calling, singing, tempting

all to trade with them.

Less one familiar sound

Twang!  Twang!  Twang!

 

Coincidentally this is also Twang Man’s season in Nepal, and if I close my eyes and let my mind drift to the Kathmandu streets I can hear his call.

Yourealiseyouhaveaproblemwhen…………….

………..you find yourself unable to use the technology upon which you have become dependent!

Last weekend my laptop developed a fault and I found myself in a very strange place.  Unable to write anything which required a space in between letters, I could not email, blog, chat or even comment coherently on a facebook status!  It was unbelievably constraining.

It did not take long for me to realise that I did not just take these things for granted, but seemed to be rather dependent on them!

Happily I had plenty of other things to take care of, so I was not exactly twiddling my thumbs.  I am not sure I even know how to twiddle thumbs.  But I found that was fine as long as I was not doing anything which required the laptop.  I discovered that with a faulty space bar there is actually not really anything you can do with a laptop!  And as for any life online?  Well, just forget it.  Even when Twang Arm was at its peak and I struggled to use the laptop, I was not as paralysed as I was by the wicked space bar.

I have mixed feelings about being confronted with my dependency.  Partly I am shocked that such a seemingly tiny fault could cause such a feeling of isolation and disengagement and highlight my dependence on technology and connectivity.   Partly, though, I was making plans to get a replacement laptop as soon as possible!

It is a keen reminder that our lives have changed beyond recognition with the advent of computers, gadgets and super-sophisticated technology.  While I cherish the richness this has brought and the special people I have connected with or re-connected with, I do just wonder if our laptops and gadgets are in charge or we are?

Twang Arm, Toenails and tight tight curls

Enough of the emotional and mental side of cancer.  it is time for me to offload, I mean update about the physical side.

Twang Arm

Twang Arm has not had a lot of attention here these past weeks, so I thought I should make amends for this neglect.  Last week has also marked 10 months since my last Taxotere chemo, and it is interesting to see how my body is recovering and what signs remain of the Chemo Club.

On one hand (or should that be arm), the lack of rant about Twang Arm must reflect the fact that its role in my life is reduced and it is causing less hassle.  However, if I have to be honest I think that it also goes to show that we have entered a phase of “comfortable cohabitation”, similar to a political coalition of forces who share no love for each other and would in fact be keen to eliminate the opposition.  I have, simply put, become used to the limited movement and discomfort and it is more subconscious than uppermost in my thoughts these days.  However, when I try to remember what Twang Arm felt like I am sure that it hurts less.  I am stronger when I swim (and faster – though let’s not get too excited about my Olympic prospects).  It is not painful unless I stretch it beyond its range of motion.  That is definite progress.

However, as Dr W said at my check last month, “it is not good enough”.  My range of motion is still significantly restricted.  I have to stand on my tip toes to turn the light on if I use Twang Arm.  When I lift my arm beyond a certain position, the Twangy bits just don’t let me move it any further, even though I think there is a very gradual, continued improvement.

So it is time to enter a new phase of confrontation with Twang Arm.  I am not going to settle for this limited use but am going to continue to push those boundaries.  Very slowly and gradually.  But shhhhhh, don’t tell Twang Arm as I need to keep the advantage!

Nails

Taxotere really hammered my fingers and toes.  I had neuropathy (numbness) for a long time afterwards and in fact still have the slightest residual numbness in my fingertips and a sensation of my toes being too big for my feet.  It is improving happily, even although it is a slow business.  But my nails have really suffered. My fingernails still break if I bump them and I keep them very short to try and prevent this.  My toenails have been somewhat more gross.   I developed a blackened big toe nail not long after chemo finished and that is slowly growing out.  As well as being discoloured though, it is also very ridged and rough in the same area.  one of my other toenails, the middle toe of my other foot, decided at this incredibly late stage to jump ship just over a week ago.  It had started growing very irregularly and roughly and seemed to be loose.  Inevitably, most of it fell off a few days ago and the remaining bit of nail is particularly ugly.

I have to put this in perspective though.  If the fast growing cells in my finger and toe nails have  had had such a hammering, then it must show the kind of damage that all fast growing cells must have taken thanks to both chemo regimes.  I have to focus on the fact that any sneaky cancer cells will have had the same battering and, I hope, the same destruction.  For the effects of Taxotere to be so evident in my extremities, it must demonstrate that the chemo has reached every micro cell in my whole body.  My discoloured and disappearing toenails are hopefully a sign of the destructive nature of the treatment on its target – the cancer beast.  The nails are by-casualties of the treatment.

Curly Locks

I can’t avoid a discussion on the side effects of chemo, without giving the subject of hair loss its due attention.  This is something I still find difficult.  My hair is growing.  It is in the region of 2 – 3 inches now, very approximately.  But I still look very different to how I did at the start of this cancer encounter.  It has come back in a mouse-grey like colour and although it is darker than it was when it first came in looking like cotton wool, it has that “grey look”.  And I would be lying if I said that I didn’t mind it being grey.  I do mind.  I don’t want grey hair.  I want my brown-with-a-hint-of-chestnut-if-I-want-to-wallow-in-fantasy hair back. I had the question of hair dying on my list when I saw Dr W2 last month, but with all of the fuss and discussion about my badly behaved port, I forgot to ask him.  And I am not sure if there is a hairdresser here who would have the experience of dying foreign (non jet black) hair which has had chemo.    However, much as I am unhappy about the colour, I am intrigued with the texture.  My flat as pancake pre-chemo hair has also disappeared and in its place curls are continuing to develop.  This has meant that although my hair is getting longer, it does not really look long, especially at the front.  It is a bit wild and crazy at the back and sides, but still points skywards and means that my forehead is still rather bare.  This means that when I look in the mirror, I still see chemo hair.  I know that is rather contrary but that is the way it is!  I love my curls and am fascinated to see how much more they will grow before my hair remembers it is meant to be straight and flat.  And I am loathe to cut off these precious curls.

Stop press………………..

After writing this on Saturday, I decided to get my hair cut after all, on Sunday.  Boy, am I glad I took the plunge!  As well as having a delicious hour long shampoo massage,  for the first time in my life I think, I walked out of the hairdresser’s with a smile on my face.  My chemo hair had been transformed into a proper hairstyle.  It looked like a hairdo and not as if I am forcing re-growth.  It has been a long time coming.  I lost the last of my hair in November 2009 and I have resented my reflection in the mirror since then.  But I don’t want to delete the previous paragraph as it shows so clearly how much of a difference this has made.

It’s still curly too  🙂