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  🙂

Advertisement

Another Landmark Day

Tomorrow is another Landmark Day.

Let’s call it the “Chemoversary” as it will be a year since I was introduced to chemo.  Once we met, we were to become regular acquaintances over nearly 6 months, and I still have some delightful reminders.  The Annie Lennox look for example, as well as the numbness in my fingers in toes, the lines across my nails and how could I almost forget the port under my skin.  In fact, my “porting” anniversary was yesterday.  Have I really lived with this device under my skin for over a year now?  You would think it was less uncomfortable by now!

However, rather than dwell too much on the Cancery side of things, I am happy to say that I have a plan for the weekend.  A non-Cancer plan.  (The weather also has plans though it seems not for our part of the country, and hopefully not as intense as predicted).

Weather permitting, and as long as there are no other unexpecteds, we hope to head out of town to Bago this full moon weekend which happily coincides with the Thadingyut Lighting Festival.

With any luck I might even FORGET that it is the Chemoversary!

My first proper haircut since the Dr Evil days

The last time I had my hair cut, was in preparation to losing my locks after chemo 1, and a quick buzz with a razor in Scotland to even up the fluff which was sticking out above my ears.  I have been resisting getting my haircut, partly because it has taken so long to re-grow (it is six months since the last chemo) and partly because I want to see how these crazy curls turn out.  But over the past couple of weeks, I have been sprouting wings above my ears.  My hair is getting longer and the curls make my hair stick out untidily, bringing an unwelcome toilet brush look.  Added to that, the main colour which seems to be coming back now is darker brown.  So I decided to get a bit of a trim to get rid of the wings and the frosted silver topping.

I realise that the last time I had a proper haircut was over a year ago, and was actually quite an experience.  So much so, that in my previous life, I wrote about it on my earlier blog. This is my account of the experience then, last August.

31 August 2009

I didn’t think it would be such a big deal. After a couple of months here and a lot of putting off, I finally decided that I had to do something about my hair. Not difficult, you would think.

 

The first challenge came on Wednesday morning, sitting having breakfast, when I learned (the hard way) that it is not auspicious to wash your hair on a Wednesday here. Apparently I was setting myself up to get the burdens of the world on my shoulders. Definitely something to be avoided – but a bit too late, as I sat with my hair dripping!

 

I had a recollection from living in Mongolia that haircutting was inauspicious on either a Monday or Tuesday, so I began research on haircutting and washing issues here.

 

It is even more complicated. Certain days are good, bad or neutral for hair washing and a different set of days is auspicious or not for hair cutting.  So in order to identify when I could have a shampoo and cut, I had to develop a complicated matrix to guide my choice of day.

 

On Saturday I was finalising my research with the intent of getting my hair cut at long last. In summary, Wednesday is not good for hair washing, and Tuesday, Saturday and Sunday are good. Fine so far. For cutting – Monday and Friday are the bad days. So I confirmed with my source that Saturday is good so that I could go ahead with the cut? It was confirmed. Saturday is good. The days to be avoided are Monday and Friday – oh – and the day you are born. You’ve guessed it – I was born on a Saturday, so the day’s plan suddenly disintegrated. Even phoning for an appointment was sabotaged as a recorded message informed me that the selected hairdressing salon had not paid their phone bill and the phone was disconnected.

 

On Sunday I therefore embarked on phase 2 of Project Haircut. This involved a pleasant walk to the Hairdresser’s, making an appointment for a shampoo and cut for myself and a friend, and returning later.

 

Arriving later for the appointment, there were more surprises to come. For the shampooing, I was a bit alarmed to be led into a room with a couch (like a doctor’s examination room) where my friend was already tucked up – and lying having her hair washed! It felt, surreal, bizarre and slightly discomforting.

I was not prepared for the most amazing shampoo of my life. For the next hour I experienced an incredible hair wash and shampoo, which included head, neck and upper back massage – totally unexpected and completely relaxing.

 

I am never, ever going to put off getting my hair cut again. In fact, I am consulting my diary right now to see when it will be the next auspicious date for a hair wash!

 

The irony of the last sentence hit me full force when I re-read it today.  How on earth was I to know that it would be my last haircut for a very long time?  How could I possibly have known that my next actual cut would be to crop my hair ready for the shave?  How much I had taken for my hair for granted.

Last weekend, I fortunately remembered that a Saturday haircut was out of the question, since I am “Saturday-born”.  However, I am sure it is not inauspicious to book a haircut on a Saturday, so that is what I did.  I made an appointment with the same Salon where I had had the delicious shampooing experience over a year ago and basked in the anticipation of my first salon shampoo in such a long while.

On Sunday I was actually slightly nervous when I arrived at the Salon.  I was concerned that Twang Arm could get too much attention, and it is difficult to explain that gentle massage in certain areas of my shoulder and back is fine but other areas near the surgery and lymphatic area should be avoided.  But the overriding sense was one of eager anticipation.

I was not disappointed, and was led into the same dimly lit room with the same three couches with a sink at the head.  I settled down and let the hairdresser start the massage, after showing her the areas not to touch.

Again the shampoo massage lasted for around 45 minutes, which is quite impressive when you consider how little hair there is to shampoo!.  It included gentle upper back and shoulder massage and even a quick massage of my feet and legs (since I had asked for my arms not to be touched). I realised at one point that the water temperature seemed to be perfect, neither too hot nor cold.  I have so many recollections of shampooing experiences where I have leapt off the seat when scalded with water that is too hot, or trying to suppress an animal like roar when freezing cold water has hit my scalp, while being asked “is the temperature ok, madam?”.  Perhaps it is one of the benefits of living in a climate which is temperate and tropical and when we rarely need to use a heater for the water but it certainly adds to the comfort of the shampoo massage.

The other thing which I particularly like about the Myanmar style massage is that, for me, it is the right mix between firm and gentle.  Thai massages are definitely invigorating but often make me squeal and leave me bruised.  Gentle massage is definitely relaxing and pleasant, but the firmer massage does give the impression that it has been more beneficial.

So after the massage, I had to somehow stir myself from the blissed state I was in, and make my way back to the styling room.  The hairdresser may have been surprised that I was having a cut, since my hair was so short, but she did nothing to express that surprise, for which I was thankful.

 

There was a bit of confusion about the cut I wanted, but that is not surprising given my odd instructions.  “Clip my wings, take away the silvery topping but leave it as long as you can”!!

The result was fine, even though I realised I had been secretly hoping that it would bring a transformation to my pre- Dr Evil days.  My hair looked darker without the silvery bits, although still a bit too grey for my liking.  It was much tidier and looks almost like a hairstyle, rather than re-growth after baldness.  Or perhaps that is wishful thinking.

I have decided that I will delay on attempting to colour it at all.  There are two reasons for this.  Firstly, it is still extremely short and if coloured would quickly develop two tones as the new hair (hopefully) continues to grow and lengthen.  The second reason is a bit more sobering.  My Big Check is next month and the fear of discovering that some nasty cells or worse have survived or developed despite all the treatment is at the forefront of my mind.  Being blunt, there is no point in colouring my hair if I had to have chemo again and lose it all over again.  And it would be a waste of money (the shrewd Scottish perspective). If, however, the Big Check goes well and I am released back into real life until the following check, then I reckon that will be a very good time to hide the grey bits.

Now that was a very long story for a very short hair cut, and a reminder of how the most mundane things that we have taken for granted take on a very different meaning!

A trip to the spa?

An interesting realisation dawned the other day. 

I know my hair is growing, and I can feel kinks, especially at the back.   There is not much to see in the mirror though, and it is still horribly short and shouts “cancer” (at least to me)  from the front.  I have been frustrated that I am the only one who doesn’t actually know what the new wavy hair looks like.  And then I realised – I could take a photo of the back of my head and actually see what is happening.

I stood with the camera poised slightly above and behind my head (obviously my right arm as Twang Arm was having none of that) and clicked away merrily.  Unfortunately the result was not too enlightening (and I missed my head altogether a couple of times).  My creative skills were working fully though, and I had the presence of mind to ask hubby J to take a picture of the back of my head.  What a brainwave!  And indeed, there are wavy, curly locks. 

They are still the wrong colour, but that can be addressed.  I am still very reluctant to even trim my hair as I am intrigued as to how the waves will turn out, and how long they will last. 

I am also happy to report some progress on the nail front.  I still have the fascinating lines and the two tone nails from the Taxotere days.  I have 4 lines – one for each Taxotere treatment, and the darker colour for those times.  As the lines are moving up towards my finger tips though, they crack and split along the lines.  Not pretty.

Similarly to the hair, I feel reluctant to do much about them until they have grown more and the funny lines and splitting are no longer there.  If that coincides with the right timing for repair of the hair colour, then I reckon it will be time for a long awaited trip to the spa for a real pampering!

A new chapter – picking up the pieces

It really is the start of a new phase and I am indeed back!  It is wonderful to be able to unpack right to the bottom of the suitcase, particularly knowing that I will not be re-packing in a few days.  (All being well and being ultra careful not to tempt fate, of course!)  I am slowly trying to pick up the pieces from last October when life changed. 

Things have of course changed a bit in my 9 months of limbo and treatment.  Friends and colleagues have moved on, new ones arrived, rainy season is here, and there have been lots of changes and developments I need to catch up on at work.  It was strange and emotional walking back towards my desk and I really had to brace myself to cross that physical threshold.   

I am trying to reconnect both professionally and personally, although this is hindered a bit by the fact it is prime holiday season and many folks are away.  I am also trying to ensure that my daily routine prioritises my health and have joined the swimming pool, and make a point of swimming most days.  This has been sabotaged a couple of times by monsoon rains at the wrong time of day, but I keep trying!

I have also finally ditched my headscarf (yes, I’m topless now 😉 ) and although I still feel self-conscious about the skinhead hairdo, I feel better without the scarf so I hope I do not frighten too many people while I wait impatiently for the hair to grow back a bit more.

A surprise has been the revenge of one of my chemo treats – a feast of jazz music for the i-pod, which I just loved when I got it.  Well now it has bitten me while I was unawares – I tried to listen to Jamie Cullum the other night and realise that if I even think of his music it transports me instantly back to those awful groundhog days.  Sorry, Jamie!  I am sure this will fade in time but for the moment, you are off-limits!

I am also trying to do things which I could not while I was in the chemo cave – that’s not difficult really, as in the latter stages of chemo life consisted of sleeping, swimming and trying to eat so I usually only left home to go to the pool.  And, of course, for those awful blood tests which always marked the imminent return to Bangkok for the next punishing dose of chemo.  As my strength returns I am eager to pick up on the things which I could not do and go to places beyond me in those recent months.

Time marches relentlessly forward and I am doing my best to march forward too, with all the changes, fears and uncertainties that have been gifted to me by whole experience.

Image

I seem to be developing a new look! 

Dr Evil is fading and being replaced by Annie Lennox!  I confess there is a mighty dose of wishful thinking there, almost certainly influenced by the fact that I am a huge fan of Annie Lennox.  But if you can imagine Annie Lennox with shorter hair, less platinum blonde, more platinum grey then I am nearly there.  Oh, and a totally different face!  The Jack Nicholson hairline is still a feature of my hairdo, but that seems to be hidden a bit by the mouse coloured stubble.  Before my “trim” in Scotland, I had a dreadful mad professor look – pure cotton wool white tufts sticking out to the sides, bald patches on top, a dreadful receding hairline, and a white-ish Mohawk where the hair was slightly longer.  Not good for the self esteem.

I am now at the stage when I occasionally go “topless”, as it is often jokingly referred to in the Breast Cancer Forums.  Unsurprising this means going out in public without scarf, hat, wig or other baldness disguise, and is nothing to do with clothes!  Oddly, I generally feel less uncomfortable being “topless” in the company of people who did not know me when I had hair or who I don’t know at all.  I am not quite at the stage when I can go out without some sort of emotional prop for the head.

My “sun-bed” look is not so attractive.  My radiation tanned skin is peeling beautifully, very rough and sandpapery and bringing a very interesting patchy look.

My fingernails are really fascinating.  As well as having an intriguing pattern of white lines which could be highly desirable (if somewhat hard to design) in a nail studio, the top half is still a strange orange-red colour from the Taxotere cycles.  The pale lower half clearly shows the growth since the Taxotere stopped. 

 I could patent the design although I would probably not include the element of the nail lifting off the nail bed.  I am not going to talk about toenails as they are just horrible.

So things will never be the same, I am sure, but they do seem to be changing when it comes to appearance.

From the recovery zone

The Dubai bruises are fading and so is the memory of radiation and chemo. 

We arrived safely on the tiny, remote Scottish island of Lismore where we are based for the next week.  It is quiet, restful, peaceful, healing and a tad cold!  We have had mostly good weather though, with sunny, fresh days and not too much wind and rain.

I am managing to walk a few gentle miles most days though twang arm is playing up still.  I am anxious to get back into the pool in a couple of weeks time.  My radiation-burnt skin is recovering and peeling in a rather disgusting fashion.  For some reasons the nails on both big toes have bruised and are very tender which I cannot understand.  Tamoxifen seems to be making me a bit maudlin which I also do not understand.  My hair is growing irregularly and in the wrong colour.

We have virtually no access to internet or mobile phone on the island so it is truly remote and peaceful.  We have ventured onto the mainland today for essential supplies and communication!  I also finally took the step of walking over the threshold into a hairdresser to do something with my mad professor hair.  It has now been evened up nicely – with the clippers!

We have another week on the island before heading off to other parts of the UK to connect with family and friends around the country. The following week we will return to Bangkok and radiation review with Dr C, and then hopefully return to Yangon.  So this haven of peace and healing is very welcome just now.

Not when, but if? …… Surely not!

As I near the finish flag in the Triathlon of heavy duty treatments I yearn more and more to get back to something like the way I used to be.  I know that it will take time to feel better, to get my own legs back and be able to do many of the things I used to be able to do.

The side effects of chemo have been a real mixed bag of delights.  It is no secret that I struggled particularly with the loss of my hair as I have ranted about it on various occasions.  I am sure it is no surprise then that one of the biggest things I look forward to is not seeing Dr Evil in the mirror any more!!

I remember so clearly, that day in November just after chemo 2 when I became bald.  I remember sitting in the chair at the hairdresser as the last of my hair fell to the floor under the clippers and being unable to stop the tears.  The shiny white scalp was such statement that I really, really was a cancer patient.

I have never been able to get used to being bald and I have really focused on the fact that hair loss from chemo is a temporary thing. In fact, the one thing I really need to hang onto at the moment is the belief that my hair is coming back, and coming soon.  After all it is over a month since my last infusion of Taxotere.  The fine covering of duck down must evolve soon into proper hair, mustn’t it?

So when I read this recent article suggesting that permanent hair loss after Taxotere is more common than we often expect, it was not a welcome piece of information.    According to the research, the numbers are people who experience permanent alopecia are not huge, but large enough to be significant – estimated at around 1 in 16.

One interesting discussion is that some people feel that they would have chosen not to have had Taxotere if they had been aware of this increased probability of permanent hair loss.

That really made me stop and think.  I cannot imagine that I would have even considered not having Taxotere, no matter how difficult I found the side effects, even if I had been aware that the hair loss could be long term.  Survival and recovery and the topmost priorities for me, given my diagnosis and pathology.

Oddly, the thing on my mind is more about how I felt that day in November particularly, and how I feel every time I look in the mirror at Dr Evil.  It was hard enough knowing my hair and I were parting company (no pun intended).  I do not know how I would have felt, and how I would have coped, if it had even occurred to me that this loss could be permanent.

I will be looking even more closely at the duck down from now on and let’s hope it does decide to thicken, grow and darken.

Progress Preview

A quick one with the headlines:

• Blood test (including needle) – done 🙂
• Review with Dr W2 – done 🙂
• Anaemia – bit better than Thursday (?!) and almost back to the level it was before Chemo 6 – hmmm.
• Transfusion – not essential, and fit to fly 🙂
• Chemo 7 (Taxotere 3) – DONE! FINISHED! 🙂 🙂 🙂
• Side effects – on their way as we speak……………….
• White cell booster – tomorrow (with needle – 😦 )
• Chemo treat – decision made, procurement in process, wait for updates
• Eyebrows – almost gone!!!  More about those disappearing rascals later…………
• Fingers and fingernails – numb, tender and a not pretty – more about them later too….

Today, Dr W2 was on great form – very positive and happy with the way things are going.  I still have quite a few questions, but was highly encouraged at how positive he was about my progress.  And trust me, he is very direct and frank (for example about my lymph node involement and the need for a heavy Chemo course) so I know he does not believe in platitudes.  Duck billed or otherwise.

So there were are – 87.5% through the Chemo event and only one more chemo left.  If all goes well that will be on April 4.  Then I will be clambering over the wall and leaving the All Exclusive Chemo Club, and much as I am grateful to it, I never ever want to have to come back!

Follicular Update

I have not ranted about hair for a while, and surprisingly things keep changing so it is time for an update.  This was prompted when I noticed something rather odd a few days ago.

Today marks 20 weeks since I started chemo. It took just over 3 weeks and an intermediate short cut to lose the hair on my scalp.

I was and am still outraged that the hairs on my legs hung on for dear life and still most are obstinately in place. My response has been a refusal to depilate. Although as well as wanting to show them how cross I am, it is actually not wise to depilate as that can give an opening for infection.

I mentioned a couple of weeks ago that weird things are happening on my head. I have a soft, uneven down covering my scalp. It is around a centimetre in length on average, and mostly a very fair, non colour. Called blonde. It is not grey or white. That is a different colour – totally different. There are also quite a few dark strands scatted around. When I check the breast cancer forums online, I learn that other women have a similar fuzz. I have no idea what impact the taxotere is having on my hair as it is less than 6 weeks since the first taxotere cycle, and whether this growth is the start of hair of an interim duck phase.

The weirdest thing I have to report though is a sudden change in eyebrow behaviour. My eyelashes have been consistently patchy, and the lower ones very sparse, but the eyebrows have stayed in place. I have no idea what their game is at this stage, but I have developed bald patches in my eyebrows. Now what on earth is that about? And I am not talking about nice, even baldness – patchy horrible baldness amidst healthy brows! How gross is that?

And how unfair to wait until 20 weeks to throw this one into the game?