Hello from the other side

I just said goodbye to Eva at the doors to the anaesthetic suite. Next time I see her she’ll be a kilo or so lighter with a different body shape. 

Last night we went out for dinner to a French restaurant. She looked beautiful  (as always – see above). Time alone together during this madness. A last supper for her boobs, so to speak. We laughed a lot, and spoke in our usual intense manner – one of the things we first bonded over aged 17 and 19. We put the world to rights and analysed ourselves and others and our french fries and profiteroles. Afterwards we walked on the beach in the dark.

We’ve talked, joked, commiserated and pontificated a lot about breasts the last months. We’ve philosophised about their cultural status, their biological use, and their symbolism. We’ve probably looked at breasts in a new light; two (usually) lumps of tissue designed for mammalian nurturing, but which vacillate between being objects of sexual desire and repositories of a disease which affects millions of women each year.

We’ve considered why the removal of breasts is such an emotionally fraught and psychologically complex process. We’ve talked about reconstruction and its implications.

And for all this thinking and pontificating and trying to exactly define the perfect biological, cultural, social and sexual nature of boobs, it still hasn’t lessened the complexity and inevitability of today.

Eva has approached it with bravery, pragmatism, optimism and thoughtful deliberation. As with this whole process, she does not struggle to identify all the positives and good things in her life and the excellent care which she has received in our privileged, wealthy healthcare system. The cognitive aspect of this illness and its treatment has been the less challenging realm of experience.

The challenging part – as with most of human existence – has been the emotional experience accompanying it. Her feelings of uncertainty and lack of control and worry and anxiety. The confrontation with mortality and its effect on those closest to her. The impact on her role as a mother. The possible effect on her sense of womanhood. The change in her physical health and fitness and her response to not feeling like the fit, strong person she was. 

And then you add in the children’s experience of her illness, my experience, and the collective experience of our family unit. It would make for one challenging spider diagram.

This blog has been primarily a record of my own emotional and psychological response to this process. At its centre is Eva and her disease process, but I’ve never wanted to be a spokesperson for her. It has held a narrative for her for when the processing of all this complexity has been difficult for her, and a form of order-making for our family. I, perhaps naively as a doctor and human, under estimated the ripple effects of a serious illness on the spouse and immediate family members of a patient. I feel guilty that perhaps my experience has been foremost through this writing; but I make no apologies. It has, somehow, been helpful for us all (even if our children are not aware).

And in a few hours, once she wakes up, the next stage will begin. Perhaps for Eva this will be the most defining moment of her illness. Not defining of her, but her experience of illness. This is irreversible, visible and scarring. It’s also, hopefully, definitive and curative. 

This beautiful lady was laughing until the last minutes. We took photos of her in her fetching hospital one-size-fits-all paper undies which could fit about four of her in. There were tears, and she looked vulnerable and small as she was wheeled away down the hall in the vast hospital bed. As she was pushed by a friendly fellow in scrubs, and we rushed to keep up with the nurse marching ahead of us, the Queensland sun shifted and bounced past the gum trees through the windows on to the tears on my love’s face.

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Farts, not Tumours

Vomiting five year-old.

Unsettled toddler.

Cancer.

Looming operation and resultant booblessness (‘tits aff’, we say in Scotland).

Uncertainty.

Unpredictability.

Anxiety.

Lack of control.

Career instability.

……………

Last Friday we attended the ED (emergency department). Eva had three days of abdominal pain and a feeling of fullness in her pelvis. We’d sat on it (not literally) for two days but as we took a walk on Good Friday we recalled our last episodes of sitting with unexplained symptoms: one month of post-partum mild bleeding ended up as a post-partum haemorrhage in a public toilet, HDU admission with a one month-old, blood transfusion and D&C; two days of pelvic fullness ended up being a ruptured ectopic pregnancy with half a litre of blood causing the discomfort, and emergency surgery; and then that growing breast lump during pregnancy and breastfeeding which an ultrasound had not previously identified.

So we went to hospital (public holiday so GP surgery not open). Eva had, perhaps subconsciously, designated these four weeks between chemotherapy and double mastectomy as hospital-free, get-fit-for-surgery, enjoy-life-as-much-as-possible time. On the way to hospital we both voiced our fears: worst case scenario was a metastatic caecal mass, or ovarian pathology such as an ovarian cancer with free fluid in the pelvis causing the irritation. Despite a normal CT and PET scan in December, our trust in imaging and diagnosis had taken a bit of a bashing. And unfortunately, the diagnosis of breast cancer in a 36 year-old very healthy breastfeeding woman with no family history of the disease makes one realise that shit happens without an (obvious) cause. The professional part of me ran through symptoms with Eva: no urinary symptoms; some mild alternating bowel habit but no fresh blood or melaena; no nausea or upper GI symptoms; amenorrhoiec due to the Mirena and possibly menopausal due to chemo; no fevers; discomfort on movement (walking) and palpation but no peritonitism; no gravitation of pain; mild (2/10) right lower quadrant discomfort.

Dx: cancer, cancer, cancer (infused with our anxiety). ??appendicitis

To cut a long story short, Eva had a large canula inserted into the scarred veins on her left wrist. Examination was unremarkable – mild discomfort on palpation, no masses. Bloods were all normal. Ultrasound was unremarkable. She was offered a CT but we decided with the current findings and results, the exposure to more radiation, and the high likelihood that it would not change any management, that it was unnecessary.

So we left with an uncertain diagnosis (which is very common in abdominal pain), but that it was more likely to be wind or some GI spasm than a malignancy.

A bad fart, not a tumour.

“You must have been so happy,” you say. “What a relief you must have felt,” you say.

On one hand, yes. Farts always trump tumours. And it’s nice to not be thrust into again dealing with pending unexpected nasty pathology. But…the emotions it gave rise to. It was like the first weeks of her diagnosis after the initial shock: the churning stomach; racing thoughts; calm, quiet exterior; feeling of impending doom.

So it knocked us more than we expected. Eva felt her mortality thrust in her face again. She realised that odd, unexplained symptoms for the rest of her life may play on her mind more than they ever did in the past. The dealing with hospitals and healthcare professionals who, in their own sanity-saving manner, remain distant and not wanting to commit to this or that for fear of getting it wrong – either a fact or the way they communicate. 

And the mental tiredness that comes with this wondering. We expected Eva to be recovering from chemo day by day – and she does feel better to some degree – but unexpected, unpredictable, unforeseen events put us on edge again.

And then you have a sleepless night with a vomiting child. And your toddler is upset at all the commotion and vomity crying unhappiness. And the swirling mush of feelings goes on and on.

And you just want to move to Thailand and go on a month-long yoga retreat and lie in a fucking spa for hours and wander through jungles and climb hills and have no responsibilities and eat things which are doused in lime and chilli and fish sauce and get sun burnt and dive off cliffs into beautiful seas. 

There’s a rather exclusive spa nearby called Ikatan. We make frequent jokes, on the tougher days, about moving in there. Cancer and two small kids would be no problem in a luxury spa, right?

Okay, onwards and upwards. Good to remember that most painful things in life are just farts and not tumours. (Mostly)

The Voices in Our Heads

I have lived with several Zen masters – all of them cats.

– Eckhart Tolle

The Guest House

 

This being human is a guest house.

Every day a new arrival.

 

A joy, a depression, a meanness

Some momentary awarness comes as an unexpected visitor.

 

Welcome and entertain them all!

Even if they’re a crowd of sorrows,

Who violently sweep your house

Empty of its furniture,

Still treat each guest honorably.

He may be clearing you out

For some new delight.

 

The dark thought, the shame, the malice,

Meet them at the door laughing,

And invite them in.

 

Be grateful for whoever comes,

Because each has been sent

As a guide from beyond.

– Rumi

 

 

 

Today is the first second Tuesday – if that makes sense – in four months when Eva has not required chemo. I said to her this evening, ‘That’s great. We’re not preparing ourselves for a week of shite.’ Not exactly Rumi.

Eva’s body is still battered by its effects, though. We spent five or six hours out of the house on Sunday, and she felt terrible for the next day or so. We are realising more the extent of this and what she can and cannot expect from her body.

 

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And our minds.  Our minds! This never-ending undulating coming and going of thoughts and feelings. The constant assessing of how do we feel? How does Eva feel? How are the kids doing? It would be easier to compartmentalise and cut oneself off from the depth and variety of feelings, but it is something we actively avoid doing. For some people, compartmentalising and suppressing difficult emotions can be a survival technique that allows continued functioning in day-to-day life. It is a live-or-die means of coping. I’ve definitely been a compartmentaliser at various times in my life, but in my personal experience it has usually ended up ultimately as an unhelpful process. I’ve learned that, with a now relatively healthy mental state and helpful coping mechanisms, it’s most useful to face discomfort head-on. This is not admirable bravery, but it is my current ‘survival technique’. For me, keeping unacknowledged fears of Eva’s mortality or the toll of this on our family or the implications for my career buried in a place where I try to pay them no heed, will raise its head in increased levels of stress, anxiety, and burnout. (Ad endum: this is a technique that does not work for people who are suffering from severe trauma or extreme personality disorders, where the experience of distressing feelings can lead to harmful and destructive behaviours. These should be addressed with an experienced practitioner.)

So how do we best deal with uncomfortable feelings, emotions, and to some extent, memories? Back in my day job I was confronted daily by people who were essentially dealing with high degrees of internal distress. Often people find it very difficult to distinguish what it is exactly that they are experiencing: fear, depression, hopelessness, anger, sadness, internalised self-hatred, regret, and confusion are probably amongst the commonest, but often two or more will co-exist. Being disengaged from reality, such as in psychosis or some types of trauma-related experiences, further worsen people’s ability to articulate what their internal experience is. And some people, for a raft of complex and fascinating reasons, simply deny that they are feeling anything.

Yesterday a lady who lives in the town where we live, who first introduced herself after having come across this blog, said to me that when her daughter-in-law was going through colorectal cancer, she and her son ‘did not have the words to express how they felt’ about what they were going through. This is a common theme when people experience difficult experiences; how do we translate our internal, complex, mish-mash, private, and confusing experience into words – a means of communication and labeling? I think we often feel overwhelmed and lost at the prospect of even trying to turn feelings into words; one is an intensely personal experience which is largely mediated by ill-defined sensations and physical impressions, whilst the other – language – is precise and concise and obeys various rules and conventions. Most of us find it difficult to work out what we’re feeling at the best of times, and some find it difficult to put the ‘right’ amount of weight on a feeling that they are experiencing (i.e. over-reacting or feeling overly affected by a particular emotion). How do we then neatly unpack it and label it and place it in an organised filing cabinet?

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One of the risks of not paying attention to feelings is that they are a potentially helpful product of complex neurobiological processes which originate in deep parts of the brain. Over millions of years, they have grown and evolved to develop into a sophisticated and nuanced warning system. Anger and sadness and hurt and surprise served us well in surviving predators and attacking foes and the elements of nature. Our lives nowadays are more complex; we are not (often) preoccupied with escaping sabre tooth tigers or a pillaging neighbouring tribe or sheltering outside from a cyclone. Our enemies are: excessive stress; lack of physical activity and stimulation; subtle and more devious forms of competition with competitors; complex social communication systems; unstable political leaders and systems; rumoured virtual enemies and persistent bombardment with horrific world news. These are our ‘normal’ stresses in the west. Others struggle with eking out a daily survival, financial ruin, and natural disasters. When you add in something like childhood abuse or dysfunctional parenting, or even a more recent event which results in a traumatised response, the deep regulatory systems of the brain are often hyper-aroused. If this happens during childhood and, to some degree, adolescence there is correspondingly poor development of parts of the prefrontal cortex – our decision-making and self-actualising centre – of the brain. Stress and abuse and disrupted relationship with a primary caregiver actually forms the way our brains grow and develop. In the same way that in later life smoking, atherosclerosis (hardening of the arteries), and hypertension have adverse effects on the blood supply to the brain and the brain changes in reaction, we see that the brain is a plastic and versatile organ which is changed both by things within the body and things outside.

So what do we do when the voices in our head are screaming ‘I don’t know what I feel’, or are frozen silent in terror, or are confused and anxious, going round and round in ruminations of all the unfortunate things that have happened and all the bad that potentially could happen?

 

We breathe.

 

Breathing is helpful on a lot of fronts and I recommend it heartily. When we breathe consciously slowly and deeply, we start regulating the most primeval part of our brain (the brain stem) which contains the neuronal bodies of the nerves enervating the basic rhythms of human life: heart rate and breathing rate. Deepening our breath also increases pressure in the chest, which further activates the part of our peripheral nervous system which is involved in relaxation and non-fight or flight response – the parasympathetic nervous system.

Now’s the scary part. When we are not rushing around and breathing fast and sweating and being tense and distracting ourselves and thinking – or saying – ‘shit shit shit’ all the time, we are even more confronted with this massive tumbling mass of clamouring sensations and voices. It’s so overwhelming and scary and can be too difficult for some people (without support and therapy and training) to handle by themselves. The overwhelming internal conflict that some people experience is thought to be the driver that leads to poorly understood behaviours such as deliberate self-harm (cutting, burning, intoxication, binge eating, purging, and, I think, also starvation in anorexia) and impulsive suicide. So these are not soft little clouds of worry I’m talking about here.

So we start breathing again, and coming back to our breath. When we feel pounding in our ears or sweat dripping or our minds being paralysed by thoughts of future horror – come back to the breath. It’s our most natural bodily rhythm which has been with us since seconds after arriving in the world and will be one of the last physiological things to happen before we leave it. That breath is our friend. Feel its coolness going in and its warmth going out. And just as the terror or rushing thoughts or feelings of weakness or ineptitude start poking up again….think about that breath.

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It sounds trite and simplistic but it is the best place to start when it comes to actually figuring out what our feelings are when we are in the midst of being overwhelmed by them. Only once there is a lower degree of activation and physiological arousal, which we sense by decreased heart rate, breathing, perspiration, and decreased levels of circulating stress hormones, does our brain enter a place where the ‘smart’ bit can actually engage with these complex sensations and cognitively work through some of the stuff that’s going on. Again, for someone with a significant history of trauma, abuse, or disrupted attachment, this process will be long and drawn-out and complicated due to what can be termed brain damage that has taken place. But the brain is plastic and can remould itself, which is great news.

So what else can alleviate this turbo boost that our brains tend to resort to when under stress? If it was as easy as breathing, surely everyone would be fine, would they not? There are a lot of things we can do, and they take time to learn. But for me, learning to sit with the scariest and biggest and most anxiety-provoking feelings has been a great lesson. Sitting on them, squeezing them into a suitcase and then dropping that into the ocean is ineffective; it pops back up to the surface hours or days or months or years later.

For me, simultaneously activating my body has also been very important. Many people talk about the benefits of sport to their mental health and overall sense of well-being. Any sport is great, and we should all do more; however, I think it’s easy to mistake the exhaustion of a hard gym session or a fast run for internal peace and quiet. It definitely releases some feel-good hormones, but it’s not necessarily done in a mindful way. In other words, the next time that those uncomfortable feelings arise and you can’t immediately start doing some chest presses or a 10km run, the patterns of reacting to those feelings will repeat themselves. Mindfully-practiced exercise like yoga (which can be done to get either an intense strength or aerobic workout if desired) combines a few great facets: there is concentration on the breath and the associated beneficial physiological changes that take place with that; there is acknowledgement that we are composed of a body and mind (that part which, for the sake of argument, experiences emotions and feelings), and some believe spirit too; it works to bring homeostasis by literally stretching the body and holding postures to a state of muscle fatigue whilst concentrating on breath and being aware of sensations going on inside us. This is what some people refer to as grounding – being aware of where our body is in space and time whilst simultaneously holding in our awareness the feelings which we are experiencing in that moment. It’s actually pretty tricky to practice breathing, focus on that breath, pay attention to the physical strain on your body, and worry at the same time! It is a bit magical or spiritual how it happens – I don’t know if there is a physiological basis for it – but when there is actual alignment of the body, and attention given to our mind and spirit (whatever that may be for you), there is a profound level of deactivation of our ‘shit shit shit’ centres in the brain. That’s my explanation, anyway.

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I know that over the last months that practicing yoga and mindfulness techniques have been super helpful for both Eva and I. There is a lot of misunderstanding of what both these things are, and I’d encourage you, if you struggle to figure out what you’re feeling and regulate your reactions to those, to investigate them both. And if you’re not interested in figuring out what you’re feeling, that poses an interesting question which I’ll invite you to explore on your therapist’s chaise longue one day.