A Big Deal

I realise that the more I move forward, the more I appreciate things differently.  In particular, things which were mundane, trivial and routine are taking on a much greater significance.

I don’t think I am alone.  A few weeks ago one of my breast cancer blog pals, Chemobabe posted the following Facebook status.

“HAIR UPDATE: I wore it up today. This is a big deal. Thanks for listening”.

Pre chemo and hair loss putting your hair up would probably be a minute, unnoticeable action and one which is completely taken for granted.  But for those of us who have lost hair and who have been measuring re-growth by the millimetre while we stare at it willing it to grow just a bit quicker, it is an important benchmark.  As Chemobabe said, “this is a big deal”.  It is one of those things that you want to stop and tell people you meet in the street, colleagues, family and even strangers.  Thank heavens for the internet and our community of folks going through such similar stages.

Last week, I was in a very similar situation when I had a haircut.  It was not my first haircut since the hair started re-growing, but it was the first haircut that really looked like a style, and not an attempt at re-growth management. I came out of the hairdresser with a grin from ear to ear, and when I got home took some pictures which I then posted on Facebook.  I nearly even posted it here and broke my psychological (and largely ineffective) barrier of self-imposed anonymity.  It was the first time I had taken a picture of myself which was more than a record to track how I am recovering.   It was a huge step forward in how I feel, my confidence, how I look and made an important statement that I am moving forward.  It was one heck of a big deal.

My trip to Bangkok last November was another big deal.  It was my first visit to Bangkok for a reason which was not hospital, particularly breast cancer related.  I was attending a conference and presenting a paper with my colleague.  I always get a buzz from participating in conferences, meeting new people, hearing new ideas, connecting with fellow professionals and learning of advances in our field.  However, I was ridiculously excited about this conference.  It represented an affirmation of my re-entry and credibility in my professional life.  And let’s be honest, when you are in the thick of treatment, with independence massively compromised, there is a horrible fear that you will never be able to pick up the pieces again and move forward.   I was also thrilled that I was feeling stronger physically and confident enough to travel alone – something which I had completely taken for granted before the diagnosis.  It was all a huge deal.

And now I am on the threshold of another big deal.  At the start of the year, I picked three words to guide and inspire me throughout the year.  I picked “Harmony, Vitality and Adventure” based on this rationale.

Tomorrow will have a focus on adventure.  I will be travelling out of town, to the field.  This is part of my work which I love.  It is particularly poignant because it is my first field trip since being ill.  It is even more significant because I discovered “the lump” only 9 days after returning from my last field trip.  I have developed an involuntary mental association between field travel and cultivating cancer.  I need to blast those associations and continue moving forward.  It will be physically demanding as well as professionally challenging.  It will be, I am sure, refreshing.  It will be a clear test of my recovery, resilience and stamina. It will be an important benchmark, and I hope it will be an adventure.

And it will be a really BIG DEAL.

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Breast cancer and boys

I read such an unusual and refreshing blog post the other day.  It was a guest post on Bringing up Goliath and written by a bloke.

Breast cancer tends to be an overwhelmingly female terrain, not surprising given that the disease predominantly affects women.  Therefore much of the Breast Cancer blogosphere is put up there by women.  I do follow some blogs which are written from a male perspective, and these tend to be from the husband or partner of a woman diagnosed with breast cancer.  And there are not many of these blogs.

This post, however, was written by the brother of the blog’s author.  And just to add an extra dimension, we learned that their mother had also been diagnosed with breast cancer a number of years earlier.  The post highlighted the very different experiences these were.  Yep – the same guy but two very different and harrowing experiences.

It really opened my eyes.  It made me think of how different the experience is for the different members of my family.  It went on to remind me how much pressure men and boys are to hide their emotions in many contexts, and just how much goes into suppressing and banishing feelings.

There is a certain young man in my life who has said that he finds my blog hard to read.  I could understand and respect that, much as I tried to encourage and persuade him to read my ramblings.  I better understand his reluctance now.  This post has brought a whole new realisation of the complexity of the different dynamics in a relationship and how this impacts on a cancer diagnosis.  And how much the cancer diagnosis has a variety of meanings and effects for the assorted people in our lives and at different times in our lives.

It also highlights the complexities of our various family and other relationships.  This really reflects the very different dynamic that tends to characterise the relationship between mother and son compared to that between brother and sister.  There is then a different pain and fear experienced and this leads to distinctive reactions and responses in the way that those close to us deal with this challenge.

I know that my eggshells rant was very introspective and self centred.  Thank you, Bringing Up Goliath, for the welcome reminder to me not to wallow in my self absorption and to consider the way that cancer has affected us all.

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  🙂

Afterwords

I was blown away by the response that my eggshells rant produced last week.  That s why I have been a bit on the quiet side – I have been reading your thoughts and replies, listening and thinking.

Rather than begin another rant and repeat the same sort of things I want to just pick out some key messages that have come through for me from everything I have read and heard over the past week.

• Thank heavens for the internet!   We are so not alone and what a dialogue we can have across the globe.

• It is just as hard not knowing what to say as it is hearing what you don’t want to hear!

• As much as we are united by our cancer diagnosis and share many common reactions, we are all different and the things which makes us prickle differ just as much as we differ.

• Cancer invades the lives of those close to people who are diagnosed, as powerfully as those themselves diagnosed.  (I found this post very thought provoking – it goes further and suggests that those around us are also cancer survivors).

And a parting thought.  There are indeed silver linings and blessings which have come out of my cancer diagnosis, and I am truly thankful and appreciative of these.  However, it does not make me hate cancer any the less!