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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33 thoughts on “Eggshells

  1. I’m not sure if this is the post you were wondering about posting or not… if so, I’m glad you did. It’s very honest and am sure will make sense to those who wish you well – even just from the sidelines like me.

    That you are hosting a battle, an unwelcome battle, makes sense to me, as do your reflections on the limitations of the “fighting” metaphor that abound.

    • Yes J – this is the one I was agonising over! I am glad it makes sense. Thanks so much for your support – it really means such a lot.

  2. I think this is a fantastic post which sits well with other posts I have been reading recently from Anna of Cancer Chronicles and others. You have raised some great questions here! I guess that just like all our cancers are different, our reactions to it and how others handle it are different too. The key is to express what you are feeling – explain to others that while you appreciate their support and care, you don’t want to hear cliches or to be told don’t worry. In a way that denies your right to be worried – of course you are going to be worried! Of course there is a chance that things won’t turn out well in the end! People just don’t know what to say – you can acknowledge that and gently remind them what not to say.(well you can try but they will still say it I find)

    I am going through fertility treatment at the moment after a series of miscarriages and if you think people don’t know what to say about cancer – or say the wrong thing..well try infertility! There is a mine field for walking on eggshells! So I relate very well to what you write here Philippa.

    • So true M, there’s just no right thing to say I guess – nothing can change our diagnosis, and that is at the heart it.

      I can’t begin to imagine how isolating it must be for you undergoing fertility treatment – I am thinking of you, and will be following your words and keeping every hope alive for you.
      Love and warm wishes
      P xx

    • Couldn’t agree with you more Marie. In a way we need to take charge of the conversation. I have become extremely overt in letting people know what not to say. It’s a start at least.

  3. Great insight P into what you have been going through and so what if you react to comments and support in different ways – I think you are allowed to. You have never shown externally that you are annoyed etc and you have always been positive. I thought you looked great in Bangkok and it is inspiring after what you have gone through. Hope to see you again soon.

    • Hey G, thanks for your comment – and for being able to lean on you so much! Our meet ups really kept me going, and it was marvellous to see you last week. I get annoyed with **** cancer – not with people 😉
      Yes, see you soon I hope – Sunday lunch 🙂
      P
      xx

  4. I don’t know where to start P … you know I find your blog particularly interesting and poignant ‘cos as you know I was diagnosed only a few weeks before you.

    I hate the words ‘fight’ and ‘battle’ especially when they are used when people have sadly died from cancer. I am not sure why … perhaps because they sound as if there was some kind of choice in there … we chose to go to war with the bloody ‘C’.

    As for the checks … well you know that I work at my hospital … and it so weird … I go there everyday and rarely think of it as the place that I was treated. But the occasions I turn up without my ID card … and as a patient … I become a completely different person … and the hospital is a completely different place.

    I have my first proper mammo check up in a few weeks and I am dreading it … I can hear them eggshells cracking under my feet …

    Bg hugs as always – P x

    • Thanks so much P – I know exactly what you mean as I have followed yours consistently too as our paths have moved forward!

      Yeah, I particularly struggle with the fight and battle terminology when a person dies from cancer – yes it sounds as if cancer can be beaten by fighting it………

      Good luck with your checks – it is an emotional roller coaster, I will be thinking of you and chanting NED across the seas!!

  5. Philippa I love this post, and if you my blog, you’ll know that I especially love a good rant. And the language of cancer and our interactions with those who don’t have cancer is a pet subject. In my family I have invoked a rule of no positive platitudes especially around my scans. Aside from extremely irritating I do it to protect myself from whatever horrors await me on the scan results. If they come back and show the tumors have shrunk, people do seem to want to celebrate this. For me though, all it really means is that I can breathe a liitle easier until the next 3 month scan. It’s just all relative isn’t it and is not something that is easily explainable to someone who is not going through it. For my own sanity I need to be able to keep things real. I completely understand this post. 😉

    • Anna thanks for this and for sharing it more widely. Yes, I follow your blog when I can, and agree that language is fraught with tension. I know what you mean about it being a protective layer too. I am so glad we have this added dimension through technology, I am not sure how the experience would have been without it…. 🙂

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  7. Spot on in so many areas, P! So pleased you decided to post after sleeping on it. Yes, the jumpy and grumpy; yes, the inane “it will be all right”s; and yes, the language. And don’t get me started on the media’s love of the mythical “all clear”!

    The Storm Riders tend to send each other some combination of thoughts, prayers and positive vibes (depending on individual spiritual preferences) before appointments and we remind each other of the circle of support we are part of.

    I find the battle/fight language wholly inappropriate for me. And the keep positive stuff I find downright irritating. In fact, on a day to day basis, I generally am fairly positive but I need the space not to be at times. Also, while it helps in dealing with everything, it isn’t going to “cure” anything. I suspect that those around us who tell us it will be all right, to keep positive or that they know we will be fine because we are a fighter, say all these things for their own benefit rather than ours. At a time when I am already under pressure the last thing I need is to have to struggle to appear positive because someone else needs me to. The only exception to this is those people close to me who are more vulnerable than I am myself.

    What I truly appreciate are those people who tell me that they will be thinking of me, they hope it will go well, or something similar, and who ask how things have gone.

    So, thoughts, prayers and positive vibes for that mammo, Paula.

    E xx

    • Thanks so much E – and for being such a constructive sounding board too as I was dithering about posting it! Yes, it is also an indication of how Breast Cancer affects those around us too. P xx

  8. Bingo Girlfriend! This month is the recheck month for me and I have felt like the queen of undefined crankiness! PTSD rears it’s ugly head and my friends hide….great post.

    Lauren
    afterfiveyears.com

    • Great to connect with you here Lauren – thanks for your comment. I have visited your blog too – I found your posts really powerful and particularly enjoyed the one about your daughter being a cancer survivor, so very thought provoking. I couldn’t find a place to post comments – I will keep visiting.

      Big hugs and will be thinking of you as the checks approach.
      P

      • Thank you for the big hugs and big hugs back to you! I am loving your blog and yes we could coordinate outfits, perhaps as we go out people will have some witty cancer comments to make giggle..
        L.

  9. This is a great post – I can identify so much with so many of your comments. Others saying it will be all right (they mean well, but how do they know?); those early days after diagnosis when you wake and forget, just briefly; the words of support that sound like platitudes for this sneaky disease. And the media coverage that it’s ‘beaten’ – people believe it, and that’s part of the reason I think why some people can even say to you, ‘Have you got the all clear?’ The media portrayal of a disease that can be ‘cured’.
    I don’t think this is an over reaction, I think you have very accurately described many of the complex emotional responses to a cancer diagnosis, and the limitations of language that we have to express them. A very thoughtful and insightful post.
    Sarah

  10. Hi
    I can identify with so much with what you say, I hadn’t realised when first dx how this would take over my life going forward. I naively thought, remove lump, have chemo and rads, take the drugs – job done!

    I have slowly come to realise that this is not the case…..this is going to be with me forever…..

    I didn’t realise how prickly I had become, not unlike what’s left of my hair atm, until someone pointed it out, in the nicest possible way – I thought I was coping really well with dealing with the acquaintances in life…..but the positive spin I feel I have to put on any comments, I find very wearing…. different with closer friends, as I don’t try!

    Battling and brave are my two pet hate words – I’m neither – I’m just doing all this the only way I know how!

    Sorry about the ramble chemo +4 is not the best day for ordering thoughts in a coherent manner!

    SJ xx

    • Thanks for your comment SJ – I agree, it does skew everything. I likened it to have new “breast cancer” glasses and seeing everything through that new lens.

      Ramble? You make perfect sense to me!

      Thinking of you as you move forward with the chemo, and sending big warm hugs.
      P

      • Funnily enough, personally, I don’t have a problem with the word cancer! Having said that, I do have huge problems with the ramifications of the illness cancer. I ‘spose I have always called a spade, a spade (gets me into trouble often), but for me (and I know this is different for others), that’s what I have been diagnosed with and have to deal with.I find it a lot more difficult when people whisper the word or call it the Big C, like it’s something I should be ashamed of. I understand that, in the past, a diagnosis always almost meant death, but that is not the case these days, especially when I was incredibly fortunate and caught it early.

        I think I had better stop because I may upset people with my views but cancer is what I have had, and the possibility of it returning is what I have to deal with going forward but a word is just a word, and we all have to deal with this the best way we know how, nobody is right, nobody is wrong, we are just all different!

        SJ xx

      • I totally get what you are saying, SJ – and what you highlight is so important. It is not a case of right and wrong – it is what works for each one of us and we are all different. And please don’t worry about upsetting folks – we all need a chance to shout!
        Thanks, and take care.
        P
        xx

  11. I, too, identify with many points you bring up in this post. I really struggle with the labels like survivor, warrior, battle, all of them. I never know what to call myself anymore. I always think back to when my mom was really sick and she begged me not to say “died after a long courageous battle with cancer” in her obituary, I never really “got it.” I totally understand now. And as for the walking around on eggshells, well that’s a perfect analogy! Also, I still wake up some days thinking none of this happened!! Thanks for another great post.

    • Thanks N, I also do not know what to call myself! Funnily enough, when my Doctor recently talked about “her oncology patients” that struck more of a comfortable chord than many other terms. Funny how the terms cancer patient and oncology patient are worlds apart!

      Thanks so much for sharing your thoughts and experience
      P

  12. Love this blog. You know I just did a blog on the same sort of thing, called the Woman in the Pink Dress and how people treat us when we are in the the dress, the expectations of a cancer patient and such.Your post echos true for me… It is so difficult to lose your identity, yet another thing to grieve in it all.

    stay well and good stuff….

    Lauren
    afterfiveyears.com

    • It’s great to connect with you too L – I have been reading your blog from the beginning since I read your comment! (I have just put a link to your blog on my blog roll).

      I found the post about your daughter being a cancer survivor particularly thought provoking. I had similar thoughts to your post on the Pink Dress and it chimed quite a bit with a post I had put up a while ago where I described living and seeing life through my “breast cancer glasses” – very similar to your Pink Dress! Perhaps we should coordinate our wardrobes 😉 !!
      Thanks and take care
      P

  13. I don’t have a problem with the word cancer either, Sarajane. Although at the early stages of treatment I found walking through that door labelled ‘cancer cantre’ was hard. By the end, it felt like home! The lowered tones ans Big C, I do find more of a problem, and for the same reasons you do.

    I’m actually not so keen on the description of patient. One of my difficulties with the Macmillan website is that in the registration process they want you to categorise yourself in this way – not that I did, of course! I’m moving forward now and, while I accept the need for the regular checks and daily medication, I don’t want to spend years thinking of myself as an oncology or breast cancer patient.

    Just goes to show – we all have our own approach to dealing with this!

    E xx

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  16. I’m new to your blog, and came to this particular post via the one you wrote about your son(?) which had been recommended by JBBC. For what it’s worth, I dont’ think this entry is self-centred – introspective, yes, but rightly so. I’ve been blessed in never having had cancer, but a number of years ago I lost a 2 year old nephew in a bad car crash. I found that there was only so much sympathy I could take: at the time, I was Student Union President in my College, so everybody knew me, and the day I came back after the funeral, I counted over 200 people who wanted to offer their sympathy. It was one of the hardest elements of the whole thing, and it exhausted me, because I was conscious of the fact that these people just wanted to support me, and however awkward or ineffective their words, I felt an obligation to accept them in the spirit they were offered, though I just wanted to run. And in the following weeks, I felt quite brittle when anybody tried to talk to me about it, and I knew I was giving off vibes that stated very clearly ‘Stay Away’.
    But you know what? It was fine. It was how I got through. It also made me much more attuned now when it’s my turn to say the sympathetic word, to make more of an effort to tune in to what the person on the receiving end of the sympathy actually wants and needs, rather than trying to give them what I think is right. And sometimes that’s hard, to listen to them, to listen to their needs, and keep my mouth shut, and be truly available to them. But then I remember what it was like for me, and I give my ego a little shush, and get on with being a friend.
    Máire

    • Great to connect with you Maire, and thank you so much for sharing your experience and perspective. It is helpful and interesting to see how the very difficult and sad experiences have similar aspects to the cancer one. I’m so sorry to hear of your nephew – and hearing you describe the conflicting emotions when overwhelmed with support. It is hard because we need people to know what we are going through, and not to ignore us or pretend it is not happening. However, we also don’t want to be overcome by it. Thank you for sharing how you see that now, and and how it has brought you the “tuning” capacity.

      Again, I am so touched by warmth, friendship and compassion
      Thank you so much

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