Eggshells

Now that the latest round of checks is behind me, I think I have an apology to make.  Around the time of these appointments I get so incredibly stressed. I feel as I am walking on eggshells, waiting for just the slightest pressure which might cause me to fall again into a great abyss.

However, I think that is probably nothing compared with the eggshells that people around me are having to walk on!

I confess to being supergrumpy and ultra jumpy.  I apologise wholeheartedly, but I have to say I do not think there is that much that I can do about it.  I have already said that I am grateful for these checks, but that does not make them any the less scary.

I know that it is really difficult for people to know what to say to me before these checks.  And I have had the audacity to moan ungratefully here about some of the encouraging and supportive comments I have received.  For example, I have found it difficult when people tell me not to worry, that it will be all right.  I have these checks because it is possible that it will NOT be all right.  Wishing me good luck is of course appreciated, but even that is tricky as it feels like tempting fate.

In fact, it is probably impossible to find something to say which I find suitable before these checks.  The root of the problem, however, is not so much what people say to me, but the fact that I am in this situation at all.  Indeed the problem goes right back to October 2009 when I heard those life changing words confirming that I had cancer.  At that moment of diagnosis, a sense of “comfort” is taken away.  All possibilities that there might be a non sinister explanation disappears and the thing we dread is a reality.  I certainly remember feeling a sense of disbelief which fostered attempts at denial.  This CANNOT be happening to me? I can not have cancer.  This can not be true.  In the days and weeks immediately following diagnosis and the start of treatment, I remember waking in the mornings, and for an instant had forgotten that I had cancer.  Then it would hit me, that sudden and overwhelming mix of grief, fear and disbelief crashing around me as realisation  dawned.  It reminds me somewhat of bereavement when you have moments where you can briefly forget that a loved one has gone, only to experience that shock and sadness anew alongside the awareness.

That is why I react so strongly to words of support.  Supportive words feel like platitudes, and we become supersensitive to all manner of language and expression.  I am trying to protect myself and build a barrier in case I hear words I do not want to hear at the checks.

It is reassuring to know I am not alone here.  I have been following a number of debates on Breast Cancer blogs and discussion sites devoted to the question of how we perceive ourselves.  We are given labels such as fighters, survivors, patients, brave warriors to name but a few, and we all feel passionately about these terms.  And we often disagree amongst ourselves.

Many people feel that some terms can almost be offensive.  For example, the very analogy of fighting comes in for a lot of criticism as it implies that those who are taken by cancer have somehow ”lost”, perhaps not fighting hard enough.  It implies that advance of our cancer is somehow related to not being strong enough or allowing it to take over.

I even find that the language I use and choose changes too, as does the way I feel about it.  One day I might react strongly to being described as being a fighter, while other days it might feel flattering to me!  It clearly struck a chord with me at some point, as the moniker of my blog bears witness.

Similarly, the role of attitude is credited with our prognosis.  I do have a positive attitude and approach to this wretched disease.  I like to take the proverbial **** out of cancer.  Well that what it has done to me, so fair’s fair!  It has involved me taking control over elements of my life which I feel can have a bearing on my health.  Being proactive about swimming daily, for example, or cracking inappropriate jokes at the expense of cancer.  However, I am not under any illusions that being positive will make a significant difference to whether or not the cancer beast makes a comeback.  The reality is that as much as cancer treatment has advanced, we know that it does not always succeed in containing or eradicating the cancer because it is sneaky and clever and some forms do not respond to the treatments.  Of course being positive and strong helps us in how we deal with our illness and treatment.  It can make a huge difference in a day.  However, it is most definitely NOT the same as “beating” cancer.

I personally found cancer treatment a struggle, though not necessarily a battle.  The distinction makes sense to me!  I found the treatment hard going, physically, emotionally and it without doubt took a toll.  As far as the cancer in my body was concerned though, it brought very little in the way of sign or symptom let alone something significant which I felt I was battling.  It was more like hosting a battle where one adversary was silent and invisible and the other only too evident.

If that is not contradictory and complex enough, I have to say a few words about the phenomenon  of ”celebrity cancer” which seems to behave differently to ordinary person cancer in the way it is reported in the media.  The indiscriminate nature of the illness and gruelling treatment and side effects of course belie that of course, which adds to the sensitivity around this.  I recently  read a number of news reports of another celebrity who has been undergoing treatment and happily this been successful.  Of course, that is the best news and what we all want to hear.  However, despite myself, I found that I was becoming highly irritated and even offended by the report when it referred to the cancer being “beaten”.  What particularly upset me was that the person concerned had previously been diagnosed at stage 4.  Now I just want to stress that I am quite delighted that this person’s cancer has responded to treatment and can totally identify with the relief and happiness in their family.  What I find difficult, however, is the implication that Stage 4 cancer can be “cured” rather than arrested and managed.  I don’t understand how stage 4 cancer can be “beaten”.  I know it can be managed, as a chronic illness and some of the terror of a stage 4 diagnosis is dissipated perhaps.  But how can it be beaten?  How can it be banished?  And what does that say to families who have lost a loved one?

There are two points to come out of this rant.  Firstly, this is based on reports rather than hard facts.  There is often a tenuous relationship between the two.  Sometimes not even as much as a tenuous link.  In all likelihood, therefore, my reaction is not even based on the facts.  Secondly, can you see the eggshells?  My goodness, how much did I overreact to this?

Whether or not it is an overreaction, it illustrates very clearly how sensitive this whole cancer business makes us.  Hearing that you have cancer brings a fear, confronting us with our mortality.  So it doesn’t really matter what language we use, or what people say to us because we now have this constant presence – the threat of cancer, which has been forced into our lives making us sensitive and vulnerable.

The irony is that I have such overwhelming support and I lean on that enormously.  All around me (in every sense) people are supporting me through this.  And how do I respond?  By being as prickly as a hedgehog having a very bad hair day.

No wonder folks feel they are walking on eggshells.  Cancer is making us walk on eggshells.

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Clarity – so am I a cancer survivor yet?

I have just found this defninition of a “Cancer Survivor”.  There are some other defninitions which are a bit more detailed but this is the one I choose for its simplicity:

A cancer survivor is an individual with cancer of any type, current or past, who is still living.

It without doubt applies to ME – so I can shout from the rooftops

“I am a cancer survivor”

That’s what I call a good start to the weekend 🙂