Life is Now

“Rabbits (says Mr. Lockley) are like human beings in many ways. One of these is certainly their staunch ability to withstand disaster and to let the stream of their life carry them along, past reaches of terror and loss. They have a certain quality which it would not be accurate to describe as callousness or indifference. It is, rather, a blessedly circumscribed imagination and an intuitive feeling that Life is Now. A foraging wild creature, intent above all upon survival, is as strong as the grass.”

Watership Down, Richard Adams (9/5/20-27/12/16)

Eva’s half way through her second round of chemotherapy now. On the whole, the side effects were not as severe during the chemo week, which is likely due to a change in the bone marrow stimulating injection which the oncologist thought she may have had a delayed hypersensitivity reaction to after round one. We changed to a short-acting variant which I gave her once a day for five days after round two. This reduced the vertigo which was so debilitating during the previous round, and the scary experience of the feeling of face-swelling and bony facial pain. The nausea, loss of appetite, tiredness, and general lethargy continue, and the tiredness is worse now in the post-chemo week than it was first time around. She now needs to sleep for a couple of hours each afternoon, whereas in week two of the first round she managed days without a sleep.

But more insidious, difficult experiences of cancer have been raising their head. They’re complex and convoluted, much more so than we would have expected. Again, this is me trying to process what Eva’s going through, and any reference to what people have said is not a criticism of any one individual. It is a reflection of how we struggle to deal with the situation, as do other people. There is no finger pointed at others, as we also try and give ourselves space to figure out how to ‘do’ this.

Eva has lost most of her hair now. I think she looks beautiful, and Eva is not particularly hung-up about her appearance. She feels more comfortable not covering her head at present as she does not want to feel like she has something to hide, or she is covering her head to ease other’s discomfort at her appearance. She also does not want – at this stage – to be faffing around with scarves, trying to create a turban in the heat and humidity when we are trying to get out the house with two kids in tow. This lack of head-covering has resulted in some humorous interactions:

A: ‘Have you gone Hare Krishna?’

Eva: ‘No, I’ve gone chemo’

B: ‘How often do you have to get that done? Is it a one all over?’

Eva: ‘No, it’s chemo all over.’

C: [On meeting this stranger for the first time, who had been told she had breast cancer] ‘Are you coping? You are. Good, good.’

Eva: [half shrugged shoulders in response to the answer which person provided for her]

Well, humorous on one hand, but arduous on the other. It was a struggle to identify what one should or could feel when another woman tells her that it was ‘liberating’ when she shaved her hair off (when she was much younger, of her own volition). Yes, when Eva had her short hairstyle for one week she did enjoy the ‘freedom’ of it. Now it is a mark of not even the underlying disease process, but the treatment for this disease process. It is hard to always ignore the sideways glances from people – who mean no ill and are doing it almost automatically. It is hard to know what to do or say or feel when virtual strangers tell you that you’re beautiful, when in a way, you don’t really care if you’re beautiful or not; you just don’t want to be doing this life-changing treatment, at all, getting your boob chopped off, your ovaries wheeked out, and missing out on your baby’s first Christmas and, in some ways, his last months of baby-dom.

This leads to another internal conflict. Eva has to submit herself to an unpleasant and energy-sapping treatment every two weeks for an illness which she had not yet felt any negative effect from. This is a psychological struggle in some ways; of her own volition, she is entering this four-month stage of near hibernation where she has what is colloquially known as ‘chemo brain’, where she feels (much more) exhausted by two young children than usual, where being out of the house for a couple of hours results in a massive physical drain. She wants to enjoy life, but the energy to do so is so tightly allotted, that it’s a real consideration as to how she spends it. The oncologist describes it as the human body’s extreme inefficiency in its conversion of chemical energy into what we can use. She describes an elite athlete as being someone whose body runs at about 20% efficiency (the ability to exchange stored energy into a usable substrate). We mere mortals shuffle along, and can be knocked off our feet by a day or two of gastro or a strong viral respiratory infection. Chemo is like that for four months, to a greater degree, and it worsens over time. Eva’s body is easily exhausted. This takes a lot of getting used to for her who ran a very tight ship in our household and with our kids. And she struggles with the pseudo-guilt of leaving me to manage the children and other day-to-day chores of the house, and looking after her to some degree. I hope it is a good lesson for her; I suppose this is a benefit of having a partner or spouse – there is someone there whose job and pleasure it is to care for you and your home and your children when you are not able to. But it is a difficult change in role for her.

On a more relational level, she finds it difficult to relate to other people in a way that is comfortable for her all the time (which is admittedly impossible, but also something you probably just want when you feel like shit for weeks on end. Small talk and platitudes are about as helpful as a hairbrush to her just now). On one hand she craves human connection and understanding and communication; but on the other hand she is so tired at times that it feels too much of an effort to do so. She struggles to listen to others in certain circumstances due to ‘chemo brain’; it feels difficult to follow conversations, especially when several people are involved. She also – I think very understandably – finds it difficult to listen to what other people are struggling with in life. She is very much cognitively aware that others’ lives and struggles and difficulties continue despite anything that she might be going through, but she does simply feel too empty (at present – this may change over time) to listen to a lengthy explanation of another’s problem. This raises feelings of guilt and inadequacy – both common feelings at present – which in themselves take energy to challenge and rid one’s self of.

(Ad endum: I discussed this Eva at morning tea, and we concluded that this was not quite an accurate depiction. I’m acutely aware that this is my interpretation of what Eva tells me and from how I know her, but of course I will not always be able to accurately translate that to the written form. She is very brave (and trusting) in not censoring or editing what I write, which is often about her reactions and thoughts. So it’s more accurate to say that Eva loves hearing others’ stories when told with genuineness and self-insight and honesty. People who have done this have been an encouragement to her throughout the last weeks. What she struggles with is when others present her with worries or concerns which are an expression of their own anxiety. She finds this difficult, at present, because with chemo brain and her own life-changing illness, she is not cognitively able to engage with someone to help them process their own concerns at the level which she would usually. SM.)

On a more existential level, she feels simultaneously a pressure and a hope when she hears of other ‘survivors’ who found their vocation or calling or passion in life once through the other end of cancer. At present it feels enough to get through a day where she can have some pleasant interactions with a baby and a four year-old energy-bomb, eat enough, and try and get out the house. Never mind become a life coach or personal trainer or motivational speaker or write the next great Australian novel as a dynamic cancer-survivor-to-be. She’d like to just be able to play with her kids without feeling wiped out and frustrated and impatient.

Without delving into personal details, there is also a sense at times of, how much suffering is enough? These are not words that Eva has used, and are probably more a projection of my own when I look at Eva’s life. There are a litany of things which have happened in which make me think, fuck, give her a break. This is potentially rather simplistic and perhaps self-pitying and introverted. But really, what’s the play here? What is this achieving?

So today Eva had most of the day by herself to try and process some of what’s been going on. The last four and half weeks have been such a non-stop onslaught of information and new experiences and future decision-consideration, she has not even read the basic leaflets about breast cancer which she was given. She has not been able to write and work out her own thoughts and feelings. Thankfully, she has found this blog useful as it has been to her what I hoped it would be: someone who knows her well being able to try and order and express and organise this insane experience into some sort of coherent narrative when her usually razor-like brain has been too dulled and drained and overwhelmed to be able to have the space and time to do that herself. One of the nicest things she has said to me was that ‘it feels like [I am] holding a space for her’ with this blog.

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And none of this detracts from the things which we are grateful and thankful for: our friends and family who continue to convey their love and support; our two healthy, vivacious children; our wonderful health system; my understanding employer; our general comfort and safety and privilege in which we live.

It’s an imperfect situation, with us trying to muddle our way through the cascade of emotions and feelings. We struggle with ongoing anxiety which is a challenge to being mindful and present. We are communicating with so many loved ones, which again can disrupt our attempts to be present in the here and now. We are trying to parent like we want to with the normal challenges that come with having two young children. We don’t expect perfection from ourselves, but setting our expectations at the ‘right’ height is a never-ending game, changing from hour to hour. And a lesson we have been trying to learn in other areas of our lives over the last years is to do nothing out of fear: not to be reactive and controlling because of a real or imagined perceived threat. It comes back to sitting with our own discomfort and pain, the anxiety and worry, and being big enough for it. Being big enough to love children and one another as we wish in it. Being big enough to connect with others. Being big enough to live out that Life is Now.

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A Chemo Christmas 

I’m not going to lie – we’ve had better. There are aspects of this which are shit. It’s Luca’s first Christmas. Eva thought being pregnant during a Queensland summer last year would be her toughest physical challenge. 

So here’s to a new year. Here’s to our new-found belief in the love and kindness and care of others. Here’s to healing and wholeness and health. Here’s to changing and being changed, both willingly and otherwise. Here’s to a beautiful lady going through it. Here’s to two beautiful children. 
And this morning I feel overly aware, somehow, of children in homes where there is little love, or no money, or violence or pain. Or Aleppo or the Congo or Sudan or Afghanistan or the neighbourhood down the road. And if I think too far, it’s hard not to feel overwhelmed. 
Let’s be light and love in our homes, in our communities, in our country, in the world.

A head of hair, a breast, two ovaries, and a slice of identity; Cancer’s haul.

This afternoon I shaved Eva’s head.

Her hair started falling out within hours of the second round of chemo on Tuesday. It was preceded by her scalp becoming exquisitely sensitive. Within hours she felt like her hair was ‘lifeless’ and just like an ‘attachment’. The last three days have been difficult for her as she has been picking clumps of hair off her arms or shoulders or neck. An eye-opener today was when our nine-month old son grabbed a fistful of hair out of her head. At this point Eva decided she wanted it shaved.

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For some reason, at some point in the past I had imagined Eva with short hair (probably catastrophising about her having cancer knowing me). And she rocks it just like I had envisioned. The photo doesn’t show it, but it is already patchy. We know that this is just another temporary step; a vague attempt at alleviating some of the inevitable inconvenience and discomfort that lies ahead. When Luca saw her he was completely unperturbed. Mia (4) came home from the neighbours and immediately said that it was ‘beautiful’, and that she wants hair this short too. She said it looked like a zebra because of the areas of patchy white amongst the dark hair. She was on the verge of tears in the shower when I said that we would leave it a couple of months before we consider cutting her hair shorter…

I decided to shave my head, too. Partly to demonstrate solidarity with Eva, but also because my personal grooming has been somewhat lacking the last weeks whilst being off work, and I was starting to look a little too mountain-man’ish. For the first time in my life I wore a cap when leaving the house yesterday purely because my head looked like a bush.

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The solidarity shaving may seem cliched and/or pointless, but when she sat across from me at lunch and said she wanted to shave her hair as it was ‘just depressing’ picking up hair all the time, I had a strong sense of not wanting her to feel more alone in this. It is her experience and journey, but we and our children are inextricably linked in it. I find the thought awful to imagine her being alone with overwhelming feelings or thoughts or fears; and it’s my place to share what I can with her, and accept what I cannot.

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The day before Eva’s second round of chemo, the gynaecologist phoned. He had inserted Eva’s Mirena (a hormone-releasing coil) a few months ago, and we had wanted to discuss with him whether this would have any implications for the prognosis of the cancer. The Mirena (if I remember correctly) releases a progestogen (synthetic progesterone); Eva’s cancer is largely insensitive to progesterone but is highly sensitive to (i.e. its growth is promoted by) oestrogen. He said that the Mirena would not be a problem, but that he was going to discuss with Eva’s oncologist the benefits of removing her ovaries. This is to remove the source of oestrogen, and to reduce the risk of Eva developing ovarian cancer in the future. Breast and ovarian cancer can share the same genetic mutation (BRCA1 and BRCA2). Getting breast cancer at the age of 36 makes it highly likely that Eva carries one of these genetic mutations. Likely from her (absent) father (bastard). (Have I mentioned that he’s not been around for 32 years?). (Bastard).

We saw the oncologist yesterday who agreed that a bilateral salpingo-oophorectomy (ovary and fallopian tube removal) would be prudent.

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I’m not well-qualified to discuss the components of female identity, but as a fellow human being who believes that maleness and femaleness are perhaps not as polar as some would believe, I can definitely give it a clumsy shot.

Eva has been very up-front since she was diagnosed about the physical implications of treatment: mastectomy, nausea, hair loss, tiredness, and deconditioning for a start.

Some things have come as a shock. She had not heard of lymphoedema before, and the potential for this should there be damage to the lymph drainage of her right arm when the surgeon removes the lymph nodes in her right axilla. It dawned on her, slowly, that chemotherapy and oestrogen-blocking medications had the potential to render her infertile and give her an early menopause, respectively.

But now the finality of having her ovaries removed is sinking in. Last year she had her left fallopian tube removed when it ruptured due to an ectopic pregnancy. A few weeks after the emergency operation she received a call from gynaecology saying that the pathology results confirmed that it was a fetus in the tube which had caused it to rupture. Until that point, Eva had not given much thought or emotion to the ‘lost’ pregnancy; she had been more absorbed with how her physical health impacted her ability to interact with her very boisterous (then) three year-old daughter. The unexpected phone call and description of a fetus, and the image of it lying in a sterile kidney dish in a pathology lab was confronting and left her in tears.

Now, her ‘biological’ clock has been shunted forward by fifteen or sixteen years or so. She will lose her ability to reproduce, her menstrual cycle, and the influence of oestrogen. She will probably need to start medication for bone protection to reduce the risk of osteoperosis. She will require another invasive procedure to remove her reproductive organs. All of which will be on the back of having had a breast and axillary lymph nodes removed, and radiotherapy, and probably still being bald. And we’ve not even considered a double mastectomy for prophylaxis, or breast reconstruction. FFS.

What do these external and internal changes do to someone’s identity? What do they mean for someone’s gender identity? What are the potential consequences for a sense of femininity which a woman has had all her life? How, if it were a man, would he feel even having his pectoral region and nipple removed, or his testicles removed as a prophylactic measure? I think men may be better able to imagine these implications for themselves, even if it is difficult to empathise with what a woman goes through.

I don’t know what all the implications are for a woman, and it would be arrogant for me to presume that I did. I don’t think they necessarily need to change one’s identity, but I think the reality is that when you look in the mirror every morning, you’ll be very aware of the absence of a breast (or the presence of a prosthetic breast, should she decide that one day). You will be aware of not having a period every month. You will be physiologically aware of not having this pulse of oestrogen. You will be aware of the sociocultural stigma around being a young woman with no hair.

I think Eva is secure enough that it will not result in any sort of identity crisis; but I think it would be naive to presume that her (or anyone going through these rapid, unheralded, multiple changes) would not be challenged to adjust to this physically – never mind emotionally and psychologically – changed person. Regardless of whether we had finished our family or not, a young woman is going through an iatrogenic (medically-caused) menopause years before she ever imagined. Her body is being mutilated (her words, not mine); and yes, of course she knows that without it being ‘mutilated’ she would die, but it does not alleviate the grief or loss for what was or what could have been.

So I suppose this is some sort of eulogy. We are very aware of the gift of medicine that is allowing Eva to be treated so well and completely and efficiently in this blessed and wealthy and generous society in which we happen to live. We are thankful for our two amazing children.

It is goodbye to that thick, glossy, long hair which I fell in love with at 17. It’s goodbye to a breast that has fed two children and has marked Eva’s passage through adolescence and young womanhood. It is goodbye to that reproductive stage of Eva’s life, and that somewhat magical and mystical cycle that is responsible for producing the human race and causing women a pain in the….well, butt isn’t very accurate, so uterus – every month. It’s goodbye to body parts and hormones and a certain appearance.

And this is sad and painful and unexpected, despite knowing it is in the name of a greater good. It deserves to be considered and acknowledged. In this surreal process which has swept us up, I want to stop and say that Eva, and any woman (or man) going through a process like this should have the right to grieve and feel loss as they move forward.

Shit. This is shit.

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When Feelings Get Complicated

Last week Eva chose to get her hair cut short in preparation for the likelihood of losing her hair after the next round of chemo (starting tomorrow). A lovely friend from kindy offered her skill and time to cut Eva’s hair. We sat on the deck on a hot morning, seeking some shade under the large pandanus tree. Mia helped to spray Eva’s hair before Nicola cut it. That morning, Mia had been concerned that people would laugh at Eva because she might look like a boy. We spent some time looking at Google images of women with short hair, and Mia was reassured that short hair on a woman would not detract from her mum’s loveliness. Nicola plaited Eva’s thick hair and tied it off, and Mia has proudly kept it.

Eva is as stunning as ever; of that there’s no doubt.

 

One of our friends, Paula, made some headscarves for Eva, which Mia and I attractively modeled:

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We have continued to receive home-cooked meals from the kindy families (and others). We have had people make baby purees for Luca and provide playdates for Mia. People have labelled Mia’s school clothes, provided a cleaner, offered to do our laundry, our Christmas shopping, and buy groceries. Friends have offered to fly in from the USA and New Zealand, other parts of Australia and Europe. Others have provided support which have made it possible for me to be at home to look after Eva and the children, for the time being.

And it’s a strange mix of absolute gratitude and wonderment at peoples’ care and kindness and thoughtfulness…and discomfort. Discomfort at ‘being a burden’, or feeling like we’re creating a bit of a drama, or like we don’t deserve this. I have this subconscious line of, ‘well, no-one’s died’ echoing in my head sometimes. But then I reflect how oddly close to home and reality and potential that could actually be. And it all feels so bizarre.

Eva’s felt increasingly better over the past four to five days, although today she got very out of breath carrying Luca around, and walking up the street to our house (an incline which a few weeks ago we would run up – me pushing Mia on her bike, and Eva pushing the pram).

I think going from being a doctor to being the spouse of a patient is a difficult and confronting transition to make (for me). I try and imagine myself being at work at the moment; perhaps trying to assess a suicidal teenager, or assist a family who are unable to manage the behaviour of their autistic child, or trying to work with a young person with anorexia nervosa who may have a body weight which puts them at risk of sudden death, and communicating to them and their parents the need to be hospitalised and medically stabilised.

And I find I am not capable of doing that at the moment, and this is hard. I feel like I can hold my shit together as much as I need to for my family on these days (although teething/crawling/face-planting/nappy rash baby, emotional/over-tired/over-stimulated pre-schooler this afternoon, and looming chemo tomorrow, made me breathe a few ‘what the f**ks’ a good number of times today). I feel in some way guilty for not being able to be at work and do my job in a stretched service with patients with real needs…but also find it unthinkable to not be with my wife and children on a daily basis just now. In reality, there is not a workable solution to having all three of them adequately looked after during the chemo week, and I wouldn’t want anyone to be doing it as much as I want to. Perhaps I am grasping at controlling this situation as much as I can? Perhaps it is just the hard reality of having a seriously ill spouse and a baby? A combination of them all, I suppose.

In my job there is a lot of emphasis placed on knowing the limits of one’s capabilities, knowing when to seek second opinions and the input of senior colleagues, and of liaising with a multidisciplinary team to achieve the optimum outcome for a patient within the real-world, often complicated situation, in which they currently live. I don’t think I have ever been averse to constructive criticism or identifying areas for improvement. But it is something else to think and know: I shouldn’t be doing my job at the moment.

In a sense, I have become a patient. There is probably a psychological toll at present which is significant enough to impair some of my decision-making abilities, to potentially skew my ability to work in a professionally empathic manner with the requisite amount of emotional and psychological self-reflection, and to also affect my cognitive abilities in stressful, charged, and unpredictable clinical situations.

It’s an odd situation to be in. But why should it be? If I had cancer, or had broken my leg, or had a chronic physical illness which was exacerbated and required time off work – it would be clear. And as I reflect, I recognise that I – a psychiatry registrar – still carry prejudices and preconceived ideas about mental illness, people’s ability to ‘cope’, and the shame and embarrassment that can be associated with not feeling like one is coping as one previously could.

As I spend the hours of the day trying to organise a family and think about what needs done and consider the practicalities of our future and think about Christmas and going to Centrelink and trying to prepare for the coming week and wanting to look after myself to be in the best shape to care for my family and spend time with loved ones visiting from interstate and communicate with loved ones near and far and liaise with super funds and training colleges and and and….

insidious thoughts bubble away subconsciously: ‘it’s just a bit of stress, Simon. Are you really this anxious? How are you going to cope if things get worse? Tim [or Graeme or Andy or any other person I can think of] wouldn’t feel like this.’

And it goes on and on. The song is on repeat and it becomes a negative mantra.

So, what brings me out of it?

  • my wife, who is still so frigging sensible and wise and logical and fun, it’s mind-blowing
  • my children, who are beautiful and fun and lovely and full of joy and are being their own amazing child-like selves (that’s this moment’s positive spin. They’re sleeping just now.)
  • my extended family and friends, who are thoughtful and kind and supportive and loving and are wishing us the best and sending us strength through their messages and gifts
  • our community, who have stood up like nothing on earth and are caring for us in the true sense of community (communitas – ‘an unstuctured community in which people are equal…the feeling of great social equality, solidarity and togetherness’)
  • yoga
  • tennis
  • writing
  • eating food prepared by others, shared with others
  • the beach
  • the sea
  • praying
  • breathing into it
  • wearing one of Eva’s headscarves, designed by Paula, with its own black rasta-style pony tail:

 

 

Feelings do not fit into neat categories generally, and especially not when major illness is involved. So best just to stick your headscarf and fake wig on, smile, and whisper a gentle meditation.

 

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How do we deal with others’ pain?

First things first: some good news from the PET scan yesterday – Eva has no bony mets. We didn’t really expect any as the CT chest/abdo/pelvis two weeks ago showed no other soft tissue/organ involvement…but then again, three weeks ago we didn’t really expect that she had cancer. (Quick recap if you’re just joining: my wife was diagnosed with invasive carcinoma of the breast, with multiple tumours, and metastatic spread to a local (axillary) lymph node at the end of November 2016. She started chemo 8 days ago, and will have that every two weeks for 16 weeks, then a mastectomy, and then radiotherapy. She has no known family history of cancer (although her dad buggered off when she was 4 so we don’t really know his side of the family, leaving her nothing but a mafioso stiletto knife from Calabria, Italy, where he was from, and a bunch of shitty genes, apparently). She is 36. We have an 8 month-old baby, and a daughter starting school in January. It’s all very surreal, still. A surreal kick in the crotch.) 

As I sat in the waiting room whilst Eva was having the PET scan, I had a recurrence of the horrendous nausea and tightness in my abdomen which I had during that entire first week or so of her diagnosis. It was a completely primal, animalistic response; it was a hot day outside and I was wearing a singlet, but despite the icy air conditioning I could feel the sweat dripping down my inner arms, and I could smell it. It’s not like the sweat of exertion or being a bit pongy at the end of the day: it was fear. Something I’d only read about before.

But all good, and enough of my body odour.

Secondly, she has had a couple of better days the last two days since the effects of chemo laid her low. She is still not herself; more tired than usual, intermittently nauseous, deep bony pain, dry mouth, rash, indigestion, intermittent appetite, etc etc. But she’s been up and out and about, and even went for a swim today (which has now put her back to bed at 2pm).

Tomorrow a friend is going to come and cut her hair short in preparation for hair loss after round two of chemo next week. Photos to follow.

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We have received hundreds of messages the last three weeks, which have blown us away with their love and support and well-wishing and expressions of care. I received one from a friend a couple of days ago who experienced an incredibly painful event last year. Her mother, with whom she is incredibly close, had a major stroke just before my friend was due to get married.  Here is a small excerpt from her message (it was epic; I’m submitting it for the Booker Prize next year). She wrote:

I was discussing some of the crap that people were saying to me about Mum with a trusted mentor. She reflected that when people say insensitive things like this, more often than not they do not do it because they want to cause offense, they do it because they are either uncomfortable or ignorant. This comment was a touchstone for me. Because people said some really fucking insensitive things to me (from my perspective). And upon reflection I think it’s because people are very uncomfortable with suffering and just sitting and ‘being with’ someone in that moment of pain is often too much, and naff blaze catchphrases are easier to blurt out than just sitting in silence with the pain.

“God doesn’t give you anything you can’t handle” – well, this is a doozy isn’t it? I don’t know how your faith is coping with this but mine has been essentially totally derailed by my Mum’s stroke. I cannot reconcile an all-loving God with a God who allows this to happen (which, I acknowledge, seems incredibly selfish because before Mum’s stroke I knew unfathomably terrible things were happening in the world but somehow my faith was okay with that as long as it wasn’t happening to me). I have found there is nothing I can say to people who say this. So I nod dutifully and ponder whether God thought everyone who died at the concentration camps in WWII or in Syria or … (insert every massive tragedy known to man) could handle it. Which I know seems petty. So that’s probably just my issue, but I thought it was worth flagging that this comment was a big trigger for me. As was people offering to pray for me – a double-edged sword because I appreciated the gesture but felt like saying “do you want to choose another God to pray to? Because the guy you’re asking to heal my Mum was the same dude who let it happen in the first place, so surely that’s a conflict of interest…”

“Everything happens for a reason” – well, if you can give me a good reason why my mother who is the kindest and most generous person I know and who tirelessly gave of herself to others deserved to have her independence and identity taken away from her then I will give you a million dollars. The same with Eva’s cancer. There may be lessons that you learn through this process that are very valuable. That is brilliant. But do not feel that you need to find reason in this. There is nothing she, or any of you have done, for her to ‘need’ to have cancer. I believe this, like my Mum’s stroke, is just a random body glitch that has huge ramifications. Having said that, should you find a deeper meaning to it all then please share it with me, as I feel I am often stuck in anger and the thought of finding meaning to this pain sounds like a great alternative.

“Well, at least… (insert any comparison here, i.e ‘you have two healthy children’, ‘you have each other’, ‘Eva is still young’)” – I have never found comparisons to other situations helpful as I feel it does not acknowledge the suffering of the individual. But, again, some people tend to believe this is ‘helpful’ to remind us that people are worse off. I just ended up repeating their phrase back to them in the form of “that is a fact that…(insert their random observation here)” and tried to move on, cover my disdain, and remind myself they are just ignorant and uncomfortable.

Some people just get it…surround yourself with them. These people will identify themselves clearly. Ask and accept help from them whenever you can. If possible, fight the urge to close your world in and do this on your own (because it is damn tempting but in the long run will be exponentially more challenging). Because the fact is that over the coming weeks and months your world will close in as you focus on getting Eva better and healing your family (because I believe illness happens to a family, not just to the one person with the diagnosis). The trick is carefully selecting those who you allow in and when you allow them in let them assist with the healing.’

Obviously our experiences are different in many ways, but the main point I think that stood out to me, is how uncomfortable most people are (including myself at times) at sitting with other people’s pain. Personally, I have not received too many outrageous comments about Eva’s cancer, so I am not on some vendetta against awkward communication about a sad situation. But I can empathise with everything my friend wrote, as I have experienced all those different examples which she delineated. (Bollocks, I just looked at my message to her when she told me about her mother….not cool. Sorry, L.)

But I am more interested as to this: WHY are we uncomfortable with others’ pain? And what is the best way to respond to it?

In a way, we can superficially acknowledge why we do not like pain which happens to us as individuals: it’s painful (duh), and pain is associated with uncomfortable emotions (fear, anxiety, dread, anger, grief, etc), which are difficult to tolerate. Our previous life experience, and certain parts of our brain, are primed to avoid prolonged feelings of discomfort. So, what happens is:

  1. We experience a situation which is considered painful (within our social/moral/cultural/religious, etc, norms)
  2. We experience an emotional response to that pain (a combination of fear, anxiety, stress response, etc)
  3. We choose avoidant behaviours to distract ourselves from those feelings, and/or we try to escape the negative stimulus
  4. If we achieve escape from those uncomfortable feelings (through denial, alcohol, other drugs, food, exercise, surfing, antisocial behaviour, or a thousand other things), we will often continue doing that for the (short-term) relief it brings us. (Or, if you’re the Dalai Lama, you practice non-attachment and acceptance and self-compassion for the original painful situation. Which is, I think, probably very useful, but that is another topic…)

So what is the difference when something painful happens to someone else? Why do we find it difficult to engage with their experience of pain?

I think there are two major complicating factors. The first is empathy; we experience some sort of similar or reflected feeling of anxiety or fear or dread as the other person tells us about their pain. We unconsciously and automatically scan our own cerebral hard drives for times when we have had some bad news, or experienced a loss, or been disappointed, etc etc. I think (unless one scores high on a psychopathy scale or the autistic spectrum and either lacks empathy and remorse or the ability to accurately identify  emotional responses and social cues, respectively) we all are able to relate to that basic and fundamental concept of humanity and human-ness in the person in front of us. The shit in us honours the shit in them (Namaste shitaste).

But why can, and when does, empathy become problematic? Again, I think there are two reasons: one is that we can over-identify with another’s pain thus becoming more involved in our own emotional response due to being ‘triggered’ by memories of our own experiences of painful stimuli in the past, and their associated unpleasant feelings; and secondly, and related, is that we can misinterpret our OWN feelings (past and present) as being synonymous with what the other person is experiencing. So either, I am so overwhelmed with what I am experiencing that I cannot disengage from that and be there for you; or, I understand/I know what you mean/tell me about it/I know what you’re feeling, and your experience of what you’re going through is exactly what I/Joe/Sheila has had.

The second thing that I think is different when we are exposed to someone else’s pain is that we are not able to control it, or the other person’s response to it, and it therefore becomes difficult to mediate our own response too. How often have you spoken to someone about something ‘painful’ that has happened to them, and you have felt like you are walking on egg shells until they crack a joke or make light of something, and you can relax? Again, our empathy ‘triggers’ us from our own previous painful experiences; but if the other person’s emotional reaction to and perception of the event are different from ours, there is some cognitive dissonance (internal feelings of conflict between what we would like to do or feel, and the cost of doing or feeling that). Someone displaying humour towards their painful situation or, to a lesser extent, being dismissive of it, goes some way to dissipating the dissonance between us wanting to be with someone in their pain (com-passion – to suffer with), and us combating the uncomfortable feelings that arise in ourselves due to our empathy and own, past experience of pain. When someone reacts in a way which does not display confusion or ambiguity or fear or anxiety towards their pain, it provides some sense of relief to the observer and vicarious fellow sufferer.

So is there an issue with that? I think that there potentially is. If we become concerned with not allowing our own pain or feelings of discomfort to negatively affect people around us, we are at risk of not addressing the pain. In our situation, it has been important to acknowledge the fear and anxiety and dread, and I have ended up doing it in this very public forum. There have been costs to that, but the big benefit is that people have reacted to us with openness and genuineness and vulnerability. This has made it easier for us, in turn, to be ourselves: not to just put on a brave face and ‘she’ll be alright, mate’ our way into the coming months whilst we die inside.

Being a doctor has put me in the interesting position of being exposed to a lot of people’s pain, but having to exert clear boundaries so that my decision-making is not impaired by being too upset and enmeshed with human suffering that I have seen. As I moved into psychiatry from emergency medicine, empathy became a tool for understanding a patient’s perception of subject emotions and experiences (phenomenology) which allows us to make a diagnosis of a mental illness (or something else) according to clinical guidelines. Empathy is a tool in my job, yet is a fundamental part of being human, and the absence of which results in severe dysfunction (psychopathy, severe narcissism).

I suppose the long and the short of this is, we need to be real with people who are in pain. We need to be brave and accept their experience of pain, not just hark back to our own memories and experience of something similar but ultimately different. We need to not compare their pain with another’s (there is always someone ‘worse off’). And we need to not advise people to find meaning in their pain. There are lots of positive experiences and character-forming that can happen when someone endures a trying and difficult episode in life, as long as they come out of it without too much emotional damage. But identifying a ‘higher meaning’ in someone’s suffering (‘to show God’s glory’, ‘to be a testimony’, ‘to suffer with those who suffer’, ‘to become stronger people’, etc etc) is at least patronising, and at the worst, somewhat psychologically abusive.

Are we strong enough to say, there is no ‘meaning’ in this (apart from shitty genes, in Eva’s situation); there is no master chess player moving you into a check-mate position; there is no divine force which has decreed that you can handle this and states that it will turn you into a better person? Are we brave enough to say, this is just awful, and I want to sit here with you in your awfulness, and laugh when you feel like you can laugh, and cry when it’s miserable, and listen to you, and I’m going to do that from my own human-ness, from my own history of hurting and knowing a little what it is like to be scared and anxious?

Well done if you got this far. Here’s a picture of my son licking the window, and a pelican:

 

 

 

 

Our Story of Vulnerability

Stop thinking about saving your face. Think of our lives and tell us your particularized world. Make up a story. Narrative is radical, creating us at the very moment it is being created. We will not blame you if your reach exceeds your grasp; if love so ignites your words they go down in flames and nothing is left but their scald. Or if, with the reticence of a surgeon’s hands, your words suture only the places where blood might flow. We know you can never do it properly – once and for all. Passion is never enough; neither is skill. But try…tell us what the world has been to you in the dark places and in the light. Don’t tell us what to believe, what to fear…Language alone protects us from the scariness of things with no names. Language alone is meditation.

Toni Morrison, The Nobel Lecture in Literature, 1993

It’s day five post-chemo. Eva’s body has reacted as if she has been taken over by some sort of super virus. She moves slowly and carefully. If she moves too quickly, she becomes ‘woozy’ – the word she keeps using to describe the sensation of fullness in her head, dizziness, vertigo, heaviness. Her appetite has slowed to a crawl, but she keeps putting fuel in to her body. Her taste is changing: wine and coffee and chocolate are not what they were a week ago. Her hip bones are starting to ache, probably from the injection she had the day after the chemotherapy, the turbo-boost to the bone marrow in her long bones and hips to start pumping out white blood cells. And she is tired. She did very little but sleep for four days. She would come in to the living room at times to interact with the children. The last three evenings (including tonight) she has felt somewhat better; but the last two mornings were disappointing. This morning she lay on Mia’s bed as Luca did bum shuffles/commando crawls/rolls around the floor. I asked her how she was and she said that she feels like her life has been taken away from her at the moment. She feels at times like she has lost control; even looking after an eight month-old baby feels overwhelming on these days.

We decided to get out the house. This was the first time she had left the house since she had chemotherapy five days ago. She was tentative despite wanting to, but I think my suggesting it gave her the last bit of impetus she needed. We set off on the less than ten minute walk to the village. We were slower than usual. Fortunately it was cooler today than it has been so we didn’t have heat and humidity to contend with as well.

Once she was moving she started to feel a bit better. We went to one of our favourite cafes, where the owner came out and gave Eva a long hug. Just before we left she came back and pressed something into Eva’s hand with her phone number on it. Like so many other incredible people, she insisted that we ask for help when we need it. She said there were some vouchers for the cafe in the bag (which made me well up). We walked away, buoyed by the visible signs of care and affection that people are demonstrating towards Eva (and by extension, our family), which made me cry properly. I haven’t cried for about a week, so that’s all good.

We always head to the sea at difficult times. Eva and I virtually ran away from our childhoods and teenage years to the sea, where we lived and worked on a ship for two years. The sea was a haven and a learning ground. There’s nothing like having nothing but thousands of miles of ocean around you to force you to orientate yourself in the world. Today, we went back to the sea again. Just up to our ankles at our local beach, but there is a timelessness and changelessness to the sea which grounds us.

Eva said a couple of times that there have been periods the last days where she has felt like she is ‘fading out’ of life, or becoming irrelevant in some way. I interpreted this as an expression, firstly, of the extreme exhaustion and discomfort she is experiencing, with understandable effects on her mood. However, there is also a clear change in roles for both of us. Eva has gone from being a full-time, stay-at-home mum looking after a baby and a pre-schooler, who may have considered going back to work as a teacher in a year or two. I have gone from being a doctor working full-time for a busy public mental health service, to becoming a full-time, stay-at-home dad and carer. Eva has gone from being a super-organised, energetic and involved mother, to some days, being barely able to lift her children, or spend any extended amount of time with them. The vocation which she has chosen to currently invest her life in full-time has suddenly become unavailable to her.

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The story of our family is changing day-by-day. The next twelve months looked quite clear to us. There were some milestones and markers which were approaching. We spent time imagining what life would be like with one child at school, and how she would change and develop. These events are still going to happen, but the angle from which we see them has changed considerably. Part of me had realised clearly the last months that life could change in the blink of an eye. I did not think I was immortal or indispensable to the Universe; sometimes when driving I would be acutely aware of how quickly my life could end if a lorry decided to swerve at the moment, or I lost control of the car. Why did I have these thoughts? Perhaps some sort of existential anxiety now that I had two children and a spouse who were financially dependent on me. I’m sure they like some other things about me too, but money’s pretty concrete sometimes.

And now our family story, the narrative of our life, has hit a hump-day. A hump year? We are not unique in this, and I don’t want to portray our situation as something out of the ordinary. Many families experience diagnoses of major illness, and experience much worse tragedies than we have. But this is our story. Can we create it, still? Has the pen been taken from our hands so that we can’t determine much but attending appointments and organising care for our kids when we have to be at a hospital?

‘Narrative is radical’, says Toni Morrison, ‘creating us at the very moment it is being created.’ We know we are being inexorably changed by this chain of events. It’s a change that has been forced upon us, and mostly upon Eva, and not something we would have asked for. But it is something that we can still be creative with. Our fears for how this could affect our children are tempered by the hopes of what this will teach them, especially Mia. Will she learn to be kind to herself when she is unwell or struggling or low in mood? Will she learn to be kind and caring towards others when they are scared and unwell? Will she look back on her childhood (maybe via her father’s verbose witterings) and be thankful that her parents demonstrated one way of dealing with a major adverse life event? Will she learn from a mother whose confidence and self-worth and value goes much deeper than her physical form, whose beauty comes from forbearance and patience and having suffered? Will she learn that she is safe; safe as a person, in her own being, and within her family? Will she learn that when bad things happen, others are there to help and to hold and to encourage? Will she learn that in the bigger picture of the world’s suffering, her kindness and courage is enough to make a difference to individuals’ lives? Maybe we can influence this story, still.

We are early on in this blip, or new trajectory rather, in our narrative. We’re feeling our way amidst the psychological and physical effects of breast cancer and its treatment. We are trying to manage the effect it has on our own mental health, and trying to sensibly deal with the difficult feelings and emotions and sensations that it gives rise to. We are learning what different days are like and what we can expect of ourselves, of our spouse, and of our children, when we all are in various degrees of tiredness and stress (and joy and happiness and relaxation and fun).

‘The scariness of things with no name’ is our monster we are struggling to contain. The unknown. The unforeseeable. And this is demanding vulnerability of ourselves. We need others love and support. We need psychological transparency (when my words here become thought disordered and bizarre, I know some fabulous colleagues who can stitch me up with some dopamine antagonists) with ourselves and one another. This vulnerability is fearful, and goes against the self-protection which we are primed to hide behind when life becomes too much. And this blog is some manifestation of that for me. I don’t want to psychoanalyse too much why I am displaying this vulnerability for others to see; there are some pretty juicy interpretations out there that we could apply. But I think it originates from some fundamental belief in the necessity of human connection, and a strong hope that people are kinder and more thoughtful and more loving than we would sometimes fear to believe. And my experience of this over the last almost three weeks is that they are. People have reflected back to me that the vulnerability displayed here has been helpful for them in their own experience of life.

This is us telling others what the world has been to us in the dark places and in the light. May our common vulnerability be a force for healing and hope.

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Tonight’s sunset

Hello Cancer, My Old Friend

I think our first response to pain – ours or someone else’s – is to self-protect. We protect ourselves by looking for someone or something to blame. Or sometimes we shield ourselves by turning to judgement or by immediately going into fix-it mode…Staying vulnerable is a risk we have to take if we want to experience connection.

Brene Brown, The Gifts of Imperfection

(As with all of this blog, everything is from my perspective and is my opinion. I don’t consult or have Eva proof-read it first. The following are my observations of Eva, and as someone who has known her intimately for 17 years, I extrapolate nuances and meaning from the conversations we have had but may not have directly discussed.)

Not long after Eva was diagnosed with cancer, in one of our more positive and hopeful moments, she decided that it was going to be important to decide how she relates to cancer. Should she attack it head on – the ‘F**k Cancer’ approach – and drum up energy and motivation and aggression to carry her on through this? Or should she take a passive-aggressive approach, resenting it, angry at it, not wanting it, but scared of it, fearful that it is a power that she could not stop?

The former approach appears, to me, to be one that could be motivated to some extent by fear; fear of loss or of defeat; fear of others (children, spouse) losing the sufferer; fear of an unknown and uncontrollable future. And it is a reaction against that fear; an adamant and angry retaliation against fear, that relies on adrenaline and the stress response – the sympathetic nervous system – to push the cancer patient through the coming months of awful treatment and into the uncertain decades to come. This is a really understandable response, and is very common, and something I could readily imagine adopting were it me in the position of being diagnosed with cancer.

The latter approach, that of a more passive-aggressive attitude, is again, arguably, driven by fear. This time the fear results in more of a ‘flight’ rather than a ‘fight’ reaction to an unwelcome intruder. But underlying the flight and denial and resistance is a belief that ultimately this beast is not ‘beatable’ (unlike the former approach which approaches it as an adversary which will be beaten into submission with enough energy, positivity, healthy living, medical adherence, etc etc). This passive-aggressive approach to fear is like a wounded animal which knows that its death may be approaching, but a reflex reaction results in a lashing out at the attacker. But a futile lashing out, without hope of escape. This too is understandable, and we all have moments in days, or days in weeks, where we feel like this. We feel caught and stuck, and the anger circles around with no way to get out, and is directed inwards.

But is there another way? A way of accepting the facts, that separates itself from religious hang-ups of punishment and guilt and attributing a greater, divine meaning to suffering; that doesn’t live in the ‘why me?’ syndrome of the West, which is, on the whole, so alien to physical suffering and disease; that doesn’t continue to identify primarily with the deep feelings of hurt and loss and sadness and anger and fear and isolation and uncertainty that are the natural part of the diagnosis and treatment of serious medical condition?

Eva felt that, for her, it was important for her to make friends with her cancer. It is part of her body. It is not a parasite or something that has been inserted into her to cause her misery. It is a collection of her own cells which have mutated; the same types of cells which make up the rest of her body which she loves and values and enjoys. She is also aware that even when (!) she makes a full recovery from this post chemotherapy, surgery, radiotherapy, and hormone therapy, her cancer will still be a part of her. It is likely she has a strong genetic predisposition to it; it’s literally in her DNA. She is not, and will never, be defined as being a breast cancer sufferer, for she is much more than that. But her body will be marked by it in visible ways. She will be aware of the possibility of cancer for the rest of her life in a way that someone who has not had it at an early age perhaps cannot conceptualise. For her, either berating her cancer, or being angry at it, or attacking it, or employing martial rhetoric towards it, is incongruent with how she aims to conduct the rest of her life. She does not want to pour energy and invest unnecessary emotions in a disease process. She does not want to be in a mental battle against the cancer itself.

So what would happen if she treated cancer less as an alien invading force, and more as an old friend? In fact, the genetic coding for it has been around as long as she has so depending on the philosophical stance one adopts towards the point at which one commences existing, it is an ‘old’ friend (despite the macroscopic evidence only having been present for a matter of months).

And what about other areas of our lives? What about if we took the fear and anger and sadness and loneliness that we all experience and instead of attacking it or lying down in a defensive but desperate posture before it, we welcomed it? “Hi anxiety, nice to see you again. I know you make me feel awful just now – my heart’s racing, I’m sweating, I want to run to the toilet, and the future is terrifying – but you and I have been here before. Let’s discuss this and then move on.”

Of course Eva would much rather not have a friend called cancer. Most things (and people) in life we can turn away from or distract ourselves from or avoid altogether if they are bothering us too much. But some things we cannot.

These techniques are not learned overnight; Eva and I have done a lot of research and reading and personal therapy to try and learn some of these tools, and it only works sometimes. But just now, Eva wants to conserve the energy she does have to be with her children when she can; to enjoy our time as a family; to not feel like every trip to the hospital is a war statement or an act of aggression. She wants to keep her mind in a place where she can live in the here and now. This is not easy, and we both struggle with this on a daily basis. But we are trying to practice acceptance, non-attachment, non-blaming and non-judgement. Of course it’s not the only way to do this; it’s just our way of trying to deal with it in the silence, between us. It’s us trying not to self-protect to the exclusion of others and the ongoing beauty and goodness and life to be lived around us.

Hello cancer, my old friend,
I’ve come to talk with you again,
Because a vision softly creeping,
Left its seeds while I was sleeping,
And the vision that was planted in my brain
Still remains
Within the sound of silence

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