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.

wp-1481452760030.jpg

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.

wp-1481452743466.jpg

Tonight’s sunset

Advertisements

Twelve Days, and Girls with Short Hair

‘So you’re getting what’s called dose dense chemotherapy. That means you’re getting it every two weeks instead of three, because you’re high risk. You’re high risk because of your age, the size of the tumour, and because it has spread to a local lymph node. So they want to get on top of it quickly, knock it out, you know?’

In the space of twelve days we went from thinking that Eva was a fit young woman with no major health problems, to starting chemotherapy. The last week had been a liminal period; a waiting space where we were variously anxious, incredulous, sad, angry, and, interestingly, almost embarrassed or guilty at all the attention we were getting. As soon as we made Eva’s diagnosis of breast cancer common knowledge to our friends and colleagues, we had received floods of offers of food and babysitting and cleaning and wine and visits. It felt incongruent with the healthy person we were seeing before us. We found ourselves thinking, maybe it won’t be so bad at all and we’ll have all this food and help, and Eva will be fine, and we’ll have to make people meals for the next six months to apologise for all the drama.

Chemo was perhaps partially designed to remind people with cancer that they are not well.

Chemo nurses are its harbingers.

The chemo nurse took her time to talk us through all the potential side effects and complications of chemotherapy. She was sensitive and kind, but I could see Eva’s shoulders drooping further as the conversation went on: nausea, vomiting, bony pain, sensory loss to fingers, indigestion, dry mouth, mouth ulcers and cuts, thrush, mood instability with the steroids, weight gain with the steroids, lymphoedema with lymph node dissection (from surgery, not the chemo, but it’s good to cover all bases), scarred veins, risk of sepsis, increasing tiredness over the 16 weeks of treatment, etc etc. When the nurse went away for a couple of minutes, Eva looked at me with tears in her eyes, whilst laughing incredulously, and said ‘for f**k sake!’ – an increasingly common phrase in our house (out of children’s earshot) over the last two weeks.

The most challenging aspect for her was the potential for her to have to limit physical contact with her children if and when they have some sort of infection (e.g. common cold), due to the risks to her, especially at certain parts of her chemo cycle when her white blood cells (responsible for fighting infection) will be severely impacted.

We sat throughout the infusion in a bit of a daze. At first we laughed almost hysterically; a neat table was set up for us with sandwiches and lamingtons, and the other patients (all at least twice Eva’s age) looked on in a slightly bemused fashion at this young couple laughing and having the nurse take photos of them. The nurse couldn’t remember the last time they had someone Eva’s age.

The first medication, doxorubicin, instantly caused some sort of mild local reaction about a quarter of the way up her arm from the cannula in the back of her hand; her hand became warm and the skin became red and patchy and very sensitive to touch. This was alleviated by ice packs and reducing the rate of the infusion. It put Eva on edge, though, who has, historically, tended to be exquisitely sensitive to a lot of medications.

The second infusion, the cyclophosphamide, did not cause any adverse effects.

In addition to the three oral medications that Eva had taken that morning at home to prevent her developing nausea, she was also given a further two intravenous doses of anti-emetic (anti-vomiting) drugs, including more dexamethasone (a steroid). She found this psychological component of being on huge quantities of medication, a challenge in itself.

She had an unsettled night and has been feeling pretty average all day. She is experiencing intermittent nausea but no vomiting and has been very tired all day, spending a lot of time in bed. I gave her the pegfilgrastim (G-CSF – stimulates the bone marrow to produce more white blood cells) to reduce the period during which she is neutropaenic (low neutrophils, the main type of white blood cell involved in the initial immune response). She will get this twenty-four hours after every session of chemotherapy.

She had a number of episodes of feeling very uncomfortable and strange, with one more severe episode; she described feeling like her face was swelling up, the bones in her face being sore, as well as tightness in her throat and chest. She had to stand up and leave the children in the middle of looking at a book with Luca. It’s difficult to know what to expect, what’s normal, and what’s potentially dangerous. I felt her heart rate, and it was not too fast, and it’s too early in treatment to worry about massive infection, but I was concerned about blood clots or a delayed reaction to the chemo. But it settled with lying down and Staksaks – rice bags which can be heated or cooled to ‘be put on cuts, sore bits, sore boobs, or frozen and thrown at doctors’ (thanks Paula :-)).

So, it has begun.

…………………………………………….

Yesterday a photo of our daughter appeared on my Facebook page from one year ago. Underneath I had written,

When we made the decision that we wanted to create another human being, we were aware of the arbitrariness of the choice, in some ways: is it reasonable to birth another creature just for our own fulfillment? What about the hardships of life which she will have to experience?

Some days are trying, but we could never have imagined the joy that lay ahead. It still seems slightly selfish sometimes; the joy and fulfillment she gives us is inestimable. She has our hearts.

And now, to experience that all over again.

At that time, Eva was about five months pregnant with Luca. It’s so bizarre to think that the cancer was already there, lost amidst the normal hormonal changes of pregnancy which Eva was experiencing.

We see now, early in her life, and perhaps more so for her than for her baby brother, how Mia is having some experience the hardships of life. The reminders of Eva’s ‘strong medicine’, and how tired she is. Dad being not as energetic or as patient as usual. She wet herself a couple of times over the past couple of days – something which still happens occasionally – but I could see Eva struggling not to read anything into that. Is she regressing? Is she very unsettled and we just don’t realise it?

Our major aim in our relationship has been to create a family where our kids have a certain type of stability and peace which we value highly: dependable, emotionally stable parents; consequential and thoughtful parenting; no exposure to alcohol abuse or domestic violence; observing two imperfect parents , who are best of friends, work through the inevitable issues that are present in any long-term relationship; no major financial worries; no exposure to mental illness which has not been treated and addressed as much as is possible.

These last two weeks have been a major shock to our ideals of stability and peace and lack of worrying, which has very much unnerved us. We know, cognitively, ‘how resilient kids are’, but we also know from personal experience and our professions as a teacher and psychiatry registrar that early life events, the home environment, and parental well-being have a major and life-long effect on children’s development.

But then, she is her own reassuringly energetic self. She still chats away and sings as she plays. She hides behind the door or under the bed when I come to say goodnight (her final attempt at creating a game out of the usual evening routine). She still wants to jump in the pool, and eat cake (thank you, Abbie), and play hide and seek with her friends when she arrived at kindy. (I was a very bad seeker; kept getting distracted talking to people. But the kids just think I’m taking long because they’ve hidden so well.)

All the usual and normal conflicts of parenting continue. Am I too strict? Am I too lenient? Does she need more routine at the moment, or should we slack off? Is she unsettled by all these people coming round and dropping off (amazing) food and talking to us and hugging us?

We had been wondering how to discuss Eva’s approaching hair loss with her, but a natural opportunity presented itself in the car yesterday. A younger girl in her ballet class crossed the road with her mum in front of our car as I drove her to day care:

‘There’s Lucy’, I pointed out to Mia.

‘Oh yeah. She’s got short hair, but she thinks she has long hair.’

‘She’s quite a bit younger than you, isn’t she? Maybe she doesn’t know how long long hair is. Do you think girls can have short hair?’

Silence.

‘Girls and women have short hair sometimes, too.’ I could only picture Sinead O’Connor, or Britney in her tough years. ‘And men have long hair sometimes’, I added, in the name of gender and hair equality.

‘Yes, I know’, she replied.

‘Do you know what? Mama is going to have short hair very soon. She’s going to get her hair cut very short.’

‘Why?’

(Shit, shit shit)

‘Well, remember that really strong medicine she’s getting? That’s so strong, and so good for her, that it makes her hair fall out! Funny, huh?’ F***ing hilarious.

‘Just like the girl with the metal leg in the video!’

‘Yes, that’s right!’ (Very fortuitously Eva had shown Mia a YouTube video a few weeks ago of a teenage girl who had a below-knee amputation to remove a malignant tumour. She ended up getting a prosthesis and was an accomplished ballet dancer. We had shown it to Mia because she likes ballet, and to demonstrate how people with all sorts of seemingly difficult problems can overcome them. They had shown pictures of her with no hair during chemo.)

‘And she’ll probably get some funny hats or scarves to wear around her head to protect her skin from the sun. What do you think about that?’

‘That’s cool!’

We chatted some more about it – I don’t remember what – and then she said,

‘Oh, but I’ll miss Mama’s hair. I like it when I hug her and it tickles me.’

I racked my brains.

‘I tell you what, before Mama gets her hair cut, we could make some plaits in her hair. Then we could ask the hairdresser to cut them off, and we can each keep one. How does that sound?’

‘Good. But what if it comes undone?’

‘We’ll tie it tightly at both ends.’

‘But hair bands aren’t always tight.’

‘Maybe we could use some wire.’

‘Okay.’

…………………………………………………………..

One thing a friend said to us yesterday, when I told her about this, was that in a lot of dealing with this with children, we will be led by our instincts. It’s hard not to think ahead: how it will it be when Eva rocks up at Mia’s first day at school with no hair? How will she take to the news that Eva’s going to lose her whole breast? There are so many variables. We need to wing this shit. Wing with confidence and love and sensitivity. Which is pretty much what parenting is, anyway – winging, with a whole lot of talking about the winging with one another and people we trust.

 

13325684_10100719236117222_5933104583851886684_n

 

 

 

Strong Women, Soldiers, and Ferris Wheels.

I’d like to write something witty and positive and insightful tonight, but I feel flat.

We met Eva’s oncologist on Friday morning. She was efficient and business-like – an ‘obsessive kraut’, according to her. She was rather fierce to her secretary (‘Tracey, is there the possibility of some name labels for Eva, please?…Tracey, the hospital has not received any protocols yet…Tracey, it’s not Peregian Springs, it’s Peregian Beach…’) and people she spoke to on the phone (‘For the next questions you’re going to ask me, the answer is two, and then it’s 8mg, and then it’s 24, so please don’t bother asking me the questions…no, that’s the wrong question you’re reading to me’). But she was understanding with us, and full of metaphors and similes. She took her time describing chemotherapy.

‘So imagine you’re down on the beach with your children, and for some reason there are two hundred partially-submerged ferris wheels in the sea. Each ferris wheel is divided into quarters, each with a different colour: red, green, yellow, blue. The ferris wheels are turning slowly. On the beach are lots of soldiers, spraying bullets at the ferris wheels. But they can only knock the ferris wheels out when they hit the blue quarter when is it visible. This is how chemotherapy works.’

(Why are there ferris wheels in the sea? Why am I at the beach with my kids when it’s crawling with soldiers and machine guns? God, this is terrifying.)

‘The drug interrupts the mutated, cancerous cell at certain points in its cycle. With you, we are going to give chemotherapy every two weeks instead of every three. This increases the amount of times it has to hit the cell at the specific point in its cycle to knock it out. Then we leave all the good guys in your immune system – the neutrophils and macrophages and phagocytes and natural killer cells and T-lymphocytes – to come along and mop up the debris.

‘And your receptor status is good. It’s strongly ER positive. Cells are not smooth and flat; they’re like the New York skyline with hundreds of 3D outcrops. There are receptor sites there for oestrogen. This is good, because we can block them with drugs like Tamoxifen.

‘We need to shrink the tumours in your breast to attain a good cosmetic effect with the surgery. There are a number of masses there, but we should be able to shrink them down. That’s where John [the surgeon] comes in. You don’t want to work downstream from him; I’m on the phone to him every morning. He kept mentioning your beautiful baby in the referral letter, and he says he never does that.’

She spoke in more detail about some of the side effects – hair loss, appetite loss, weight loss – and told us more about the next months.

‘So you’ll be on doxrubicin and cyclophosphamide every two weeks for eight weeks, then Taxol [paclitaxel] every two weeks for eight weeks. Your homework is to get an echo before chemo starts to make sure your heart’s okay, then a bone scan – although I don’t think it will show any metastases, blood tests every two weeks, and to take these three medicines to stop you vomiting. You take this one once on the day of chemo; this one twice a day on the day of chemo and then for a further three days; and this one once on the day of chemo, with food, and then for a further three days. When we start the Taxol we’ll need to add more anti-emetic drugs, and watch for side effects,’ She turned to me, ‘you know rashes, Stevens-Johnson syndrome, stuff like that.’

‘And you will lose your hair. Maybe try wearing some scarves or a beanie now so the kids can get used to it. Wigs are too hot here. I had one patient who removed her wig to wipe some sweat away when she thought no-one was looking, then the shopkeeper behind the counter looked in the mirror at her and fainted. You’re quite pretty, which means you’ll carry it off.

‘For the four days after chemo, every time you feel tired, lie down. Do not do anything. And eat chocolate and drink wine. You’ll need the calories.

‘Oh, and there are five types of people you’ll meet now. The hippies who tell you to drink a potion of bat wings and dandelions. The know-it-alls whose great-grandmother’s sister’s cousin had ovarian cancer and she’s now 87. Then there are those who don’t know what to say and won’t be in touch, and might even cross the road when they see you. And there are those who affirm how bad this all is, and how disastrous it is, and are negative. The only people you want are the next group: they turn up at your house with a bottle of wine and a joke and remind you that life goes on. Only spend time with these people. Block everyone else. You don’t need them just now.’

‘So sixteen weeks of chemo, then a couple of weeks off, then John will do your surgery, then ten days or so for tissue healing, then about six weeks of radiotherapy. So you should be done about June next year. Then we can start Tamoxifen and estrogen blockers.’

We left, with a pile of referrals, prescriptions, scribbled-on paper, and went round the corner to find a cafe.

Eva sat in a daze, and cried.

…………………………………………………………………………

The oncologist took about an hour to impart all that information, and was constantly on the phone on our behalf, asking about wigs and the nearest place to get an echo and a dexa scan. But Eva was spent by the end of it. I added every date into my diary on my phone, adding ‘repeat every two weeks’ for chemo, although I’m pretty sure it won’t escape me.

Our life had suddenly gathered a whole lot of pace. It had been a week of limbo, characterised by the first 48 hours or so of shock and terror; the amazing high of the well-wishing and love and optimism flowing in as we shared the news with people; then variable periods of normality, disbelief, some anger, and enjoying the last days with Eva’s brother and his wife. They left later on in the day after the appointment with the oncologist, after they had put the Christmas tree up with Mia.

Yesterday was rough. We both felt exhausted. The kids have been waking up early all week. Our night sleep has been disrupted. We were emotionally wrung-out from talking with one another and Markus and Mirjam, and sad to see them go. But we also wanted our own space to try and imagine the next weeks. I was shitty and short with Mia (for the umpteenth time, it feels).

A massive question hanging over me was what to do about work. After we left the appointment, and had dried our tears with coffee and eggs benedict, we decided that our ideal would be that I could somehow be off work for a period of time. We have no family here (except an uncle and aunt and cousins in Sydney), and despite all the amazing offers from friends, we didn’t see how we could hand over care of an eight-month old to others, and possibly Eva feeling dreadful for a good proportion of each two-week period, whilst looking after an uber-energetic four year-old. Who will start school in the middle of all this. We could not afford – and would not want – to put her into day care for long periods of time. There were one or two people in Europe we would love to have here to help out, but even so they could not stay for months and they are at this point unable to come.

So we are looking at the options of how I can have some extended leave from work. My boss has been very flexible and accommodating and has encouraged me to put my family first, but there are some hard practicalities to negotiate.

But again, the love and well-wishing and kindness are flowing in. It lifts us and makes us hopeful and positive about where we will be. I wanted to write ‘where we will be in twelve months’ time’, but the fact is we need to be in the moment, present, and available to one another and our children. And also ourselves. We’re trying to give each other the space to express when we feel anxious or negative, and to give the other a lift when it is not so. I like that we’re able to tag-team, but it’s also a reminder to me of how remarkable this woman, my best friend, is.

Which brings me to strong women. Ever since my pre-pubertal fascination with She-Ra: Princess of Power (still gives me a funny feeling), I’ve appreciated the strength of women. Too often the depiction of a woman’s strength is still limited to her intuition, or multitasking, or sensitivity, or her ability to put other’s first. I want my daughter to grow up knowing she is powerful; that she can do anything as well as a man can, and perhaps anything physical that a lot of men can. I’ve always admired Eva’s physical strength and natural athleticism; we worked together as deck hands on a ship when we were 18 and 19, respectively, and she was one of the few women in that job. She has always been someone who would run and jump and climb spontaneously, and would never sacrifice physical comfort and dexterity for a pair of heels which would cripple her. Since moving to Queensland she has been swimming with a mums swimming squad (creche provided), despite never having swum seriously before. Up until eight months pregnant she would still swim, an hour at a time. (Weird, with cancer in her boob…)

Eva will not thank me for this, but when she was waitressing whilst a student, she was approached by a woman who worked for Conde Naste publications, who told her that she should model for them. She gave her a phone number of someone who managed their models. Eva decided not to contact them. It’s one of the things I find most beautiful about her: how she does not flaunt her beauty.

But now she has grown to appreciate her body even more. Her strong body. It’s carried two babies to term, fed them from her breast, managed a ruptured ectopic pregnancy. It’s strong and fit and supple. She has worked hard to feel strong and healthy and capable. So this blow to her physical health has hit her hard. She is scared of feeling weak. She is scared of not being able to carry a (huge) baby on her hip whilst pulling a pram over soft sand when it’s 35 degrees Celcius. She is sad to think of not being able to hoist her nearly five year-old up when she wants to cuddle her. She is anxious about feeling exhausted and worn out beyond what she has experienced before. She was so happy that being 8 months pregnant last summer would mean that it would be the most uncomfortable summer of her life over; now she will be having chemotherapy over this summer.

There is enough written about the psychological and emotional impact of cancer, and breast cancer on women, especially in regards to their sense of femininity with the loss of their hair and potentially one or both breasts. We think of how awful it would be if a healthy young male lost his strength. Let’s talk about strong women, and be thankful for that strength. I am so glad that my daughter has such a strong mother. I am so glad that she is going to see a beautiful, strong, and healthy-again mother, who will be confident in her strength and health, one-breasted and with new hair perhaps. I am thankful for the Serena Williams, the Simone Biles, the Jessica Ennis-Hills, and the Eva Menelaws of the world (and She-Ra, of course).

Strong is Beautiful. A lesson I hope my daughter sees and hears.

(We took some deliberate photos of Eva this week so she could have the most recent memory of how she felt and looked pre-chemo and pre-mastectomy.)

20161129_122406img_20161105_16360520161201_11502320160326_08223920161128_085044

The Discipline of Hope

I’ve got a PhD in Catastrophisation and Anxiety (with distinction). Prior to Eva being diagnosed with breast cancer, I had already – years ago – envisioned Eva dying; me dying and leaving Eva with not-yet-conceived kids; our not-yet-conceived kids dying; Eva dying and leaving me with not-yet-conceived kids; my best mate dying; me losing my ability to work and support my not-yet-conceived kids, etc etc. I could easily go on.

When we received Eva’s diagnosis, my well-primed anxiety response took flight. The morning after (I think) I was with both kids by myself as Eva tried to sleep again after a restless night. I remember feeding Luca while Mia played on the floor. And I remember trying to sing and smile at Luca whilst I fought what was essentially the beginning of a panic attack. I felt this image taking over my vision: trying to raise two kids alone, who missed their mother; feeling ill-equipped and scared; trying to make up all the parenting that they would miss in Eva’s absence.

But we don’t get to fall apart. This is Eva’s battle, primarily. I’m just the cavalry, bringing up the rear. It’s my job to support her and protect the most vulnerable and precious members of our family. It’s not within the traditional role of the western male (or most cultures’ concept of masculinity) to admit to being scared shitless and scared of not coping. But I guess we’ve all had it to one degree or another. How conscious or not we are of it, and how we deal with it, is key.

Hope needs to become a discipline these days. We cannot control our circumstances but there is some room to control our reactions to them. I could expend energy imagining planning a funeral. Or I could invest energy in imagining a fit, strong Eva in twelve months’ time, back to swimming with the mum’s squad, running around with the kids, getting ready to go on well-deserved holiday. And which image will give rise to the greater feeling of anxiety in me – or us, as this battle is as acute for Eva? Unpleasant feelings are still there – uncertainty, worry, tension, grief. Hopefully by learning to sit and acknowledge those feelings, I can then proactively choose to imagine a beautiful future, rather than be riddled with the anxiety of the potentially disastrous one.

This Emily Dickenson poem was in my head this week; it is oft quoted by one of dear friends, Megan, and true to form, a letter arrived from her for Eva a couple of days after:

Hope is the thing with feathers 

That perches in the soul 

And sings the tune without the words 

And never stops at all.

Mama has a klumpen in her brust.

‘Mia, remember I told you about having the lump removed from my knee when I was younger?’, said Eva, in German.

Mia sat on Eva’s knee, half paying attention.

‘Yes.’

‘And remember that I told you that I have been having lots of pictures taken of the lump (klumpen) in my breast (brust) over the last week?’

‘Yes.’

‘Well, the doctors said that I have to get it taken out. I’m going to go to hospital and they’ll make a cut in my breast whilst I’m asleep.’

‘Can we visit you in hospital?’, she said excitedly. ‘Like we did when you had the sore tummy before?’ I cast my mind back to when Eva had the ruptured ectopic pregnancy last year. Mia had been so happy to get dressed in special clothes and march up to the ward to proudly present Eva with a bunch of flowers.

‘Of course you can.’

We were out on the deck. She jumped off Eva’s lap and came over to me. She leaned in to me and whispered loudly, ‘we can get Mama some of those chocolates, the little round ones…what are they called?’

‘Ferrero rocher?’, I asked.

‘Yes! And we can get her lillies, because they’re her favourite flowers.’

Her eyes were sparkling and she looked across at Eva.

‘Did you hear what I said, Mama?’

She looked back to me. ‘I want to tell her!’

‘Let’s keep it a surprise,’ I suggested. ‘Maybe you can make her a card, too?

She nodded intently, her eyes wide.

‘So there are three things that are going to happen to Mama, Mia. First the doctors are going to put her to sleep and remove the lump from her breast.’

‘Will she have a big cut? Like Lottie’s dad had in his leg when he hurt it?’

‘Yes, it will be a big cut.’ I hesitated, and considered whether it would be helpful to tell her that Eva would have her whole breast removed.

‘He had a cut right up to here, didn’t he?,’ she asked, motioning to the top of her hip.

‘Well, it wasn’t quite that big. The next thing that’s going to happen is that the doctors are going to give her super strong medicine. It will go all round her body and make sure that all the bits of klumpen are gone.’ I don’t know why I was inserting German words. ‘Mama will be really tired when she has that medicine and will need lots of rest.’

She nodded.

‘After that, they are going to put magic rays on to Mama’s chest, also to help get rid of the klumpen.’ I wiggled my fingers towards Mia’s chest.

‘Do you understand, Mia?’

‘Yes. But I want to tell her.’

‘Let’s keep it a surprise, okay? The main thing to remember Mia, is that I am going to be looking after you and Luca, and Mama. Even when Mama is tired, I’ll be looking after you. And you know what? There are going to be so many people looking after our whole family! That’s why Julian and Abbie and James are bringing us food. We are so well looked after, which is amazing.’

I think she had zoned out by then, bedazzled by thoughts of flowers and chocolates and hospital visits.

Phew.

………………………………………………………………………………

We had no idea when or how we were going to explain what was happening to Mia. Our gut instinct had been to just let her ask questions as we attended more and more appointments. But Eva became somewhat uneasy about this. For us it felt right to give Mia some kind of idea that something was going to happen. She had not remarked on people dropping off food or the hugs or the hushed conversations and phone calls (which we had tried to keep to a minimum). It felt the right decision in that moment, which I think is how a lot of our words and actions are going to be guided. There is no manual for this. Only the experience of those who have been through it before, and knowing, as much as possible, what is good for our child.

The next day she pulled a cafetiere of fresh coffee on to herself. Good to still have a four year-old around to keep us on our toes. (She’s fine, by the way).

elbow

 

 

In the Wee Hours

Some practicalities first. Yesterday we received a phone call from the surgeon who had just left the MDT (multidisciplinary team) meeting. He said that the receptor status came back as ER ([o]estrogen receptor) and PR (progesterone receptor) positive, but HER2 negative. This means that it will, hopefully, respond to blockade of these hormones in Eva’s body.

Something he said to us last week was that, perversely, gestation and lactation have probably been a rich feeding ground for the cancer. The increased vasculature of the breast; increased presence of growth factors and cytokines (chemical mediators in the body); the juicy circulation of hormones.

(One could wax lyrical about the perversity of the tumour-laden breast feeding an infant, but let’s not. What has been, has been.)

In terms of treatment, the decision was made to pursue neoadjuvant chemotherapy before mastectomy. It’s nice to have a decision on that front.

……………………………………………………………………………

It’s 03:36, when sleep is scarce, the perfect time to never reflect too much on anything.

The last two to three days have been incredible. The outpouring of love and support and kindness and optimism and warmth have really bowled us over. I personally had not previously been able to relate to people’s appreciation for this very simple and natural human response to their difficult situation. I suppose my subconscious reaction was something along the lines of, my well-wishing is not really going to help your cancer/divorce/grief/loss, etc.

But how wrong I was. Cliches are wonderful because they are true. This has been a tidal wave that has lifted us and carried us. From feeling low, stuck in mud, slow and ponderous, lost, we now have hours of feeling like we’re being moved by a higher power, pushing us along with lightness and strength and hope. It is nothing short of magical. For this we are incredibly thankful. It’s life and energy where there is cellular mutation and fear of change and illness and distress. It’s goodness and healing to lumps and masses of the body and soul. We are indelibly marked and changed by this energy.

I do not want this blog to be a place for negativity, or a record of sadness. I want it to be a testament to hope and healing. But the surgeon did give helpful advice. He said that, in his experience, women with breast cancer who do not ‘do well’ are those who: a) adopt a passive-aggressive approach to their illness; B) those who are strongly religious and who accept illness as God’s will, who accept recovery as God’s will, and who accept death as God’s will. He stated that he was originally of a faith background, but wisely countered that with, ‘as I grow older, I realise the less I know in this regards.’ This solid surgical man spoke of the mind and attitude’s effect on the body’s immune response to relaxation and optimism as opposed to stress and anxiety. In my field of medicine, we know that chronic stress leads to various mental illnesses, and we can often see functional correlates on MRI scans as well as the clear psychological and physical symptoms of the illness. Stress can precipitate psychosis, anxiety, and depression. Lack of appropriate care in childhood can lead to disrupted attachment with a primary caregiver, which in extreme circumstances can lead to poor development of the dorsolateral prefrontal cortex in the child’s brain. This shit is real.

As he put it, ‘do not go into this with a burr in your soul.’

So, for the sake of expunging burrs and breathing in this discomfort, and not for the sake of voicing negativity…

We’ve received hundreds of beautiful, positive messages from people, each one a little nugget of gold just now.

But we received one negative one.

Both of us know on some level it was not intended to be negative, but instincts and emotional responses are pretty rapid and powerful at present. I had asked on social media if anyone knew how to make money from a blog, so that if/when my paid leave from my supportive work ran out I could possibly supplement my income. In response, a few well-meaning individuals mentioned other means of financial support (e.g. crowd funding, Go Fund Me) – which I had made no reference to, and all of which I have since deleted. The private message I then received went like this:

  • people don’t like crowd funding, etc, because others have done this who lied about cancer and have raised a fortune for themselves
  • people will be cynical if they think I am doing this for money, and it can appear that I am trying to ‘wring out every ounce of tragedy and emotion to make people feel sorry for [me]’
  • I have an ‘excellent lifestyle’ which many could envy, and blogs can be hacked by ‘envious people, with horrendous results’
  • the ‘normal’ way of coping with tragedy is family
  • ‘first and foremost’ I should be putting my faith and trust in my ‘Heavenly Father’ to provide
  • I could be trolled, which is ‘truly wicked and vile’
  • the trolls could potentially find where I work and where my children go to kindy

WTF?

I don’t want to dwell on the content of this message. This person states that they administer social media accounts and do fundraising for clients, so this was a purely professional communication.

When I received this message, Eva saw some kind of response in me without me saying anything. Damn, she knows me well. She said to me, ‘you’ve just got a message from so-and-so, haven’t you?’ This person has a long history of unfiltered, thoughtless communication which has caused us no end of stress. She, of course, read the message too.

The end result was like the wind turning and our ship which had been skimming along the surface of the water slowed to a standstill. Deflated doesn’t do it justice. I felt it, but I was most sad to see Eva’s response. Where the humour and cancer jokes and liveliness were present in good amounts, she became anxious and flat. She questioned her approach to how she was dealing with all of this. The language and religious fervour harked back to her own childhood and the obsession with appearances and how one presents one self.

I don’t want to go on. I am expunging, and making room for this. I’m breathing in to it. It demonstrated again to us how vulnerable we feel just now. And I understand a blog and social media posting about a serious illness can give a sense of being ‘okay’ with this. It is part of our way of dealing with it: head-on, out in the open, in your face, trying to verbalise and outline this maelstrom of emotions. And that is vulnerable and we do leave ourselves open to misunderstanding and people’s opinions.

This person has since apologised that it went ‘completely pear shaped’, but the damage was done to our day yesterday.

We are moving on from this, as this is the only thing we can do. We concentrated on the three practical, very helpful things that this person is also doing, for which we are truly thankful as they are part of reducing stress and discomfort during this period.

We’re breathing in and making room around the disappointment and hurt and anger and sadness. We’re opening up and being bigger than our feelings. We’re soaking in the love and goodness and optimism expressed by so many people. We’re basking in the practical care that so many people are demonstrating (meals, offers of babysitting, play dates – for our children, not us, although we will request the same – laundry, picking up shopping). It is a gathering force that is going to meet the disorganisation and exhaustion and fear and uncertainty of the coming weeks and months, and which we know is going to make it more than bearable.

It’s late spring here in Queensland. The sun is getting hotter and the vegetation is richer from recent rain. The sea is perfect. The subtropics are where our souls were designed for. It bathes us with warmth and light and beauty. We feel incredibly thankful for lives in a safe (for us) country. We are blessed beyond measure. Our suffering is a piss drop in the sea of humanity. It is Eva’s, it is ours, and it is real and sore. But we are safe; we are clothed; we are fed; we are free; we are citizens and permanent residents; we are employed; we have healthcare. Our pain is contained.

Breathe.

………………………………………….

On a lighter note, my multitasking is improving. Yesterday, as I was driving Mia to kindy (f*** off trolls, who are interested in knowing that) I had a good silent cry to this version of this song. Note quite sure what I was crying about but the floodgates are somewhat leaky at present. Mia was right behind me so couldn’t see. So I can now drive, cry quietly and wipe tears away, listen to music loudly, and communicate with a four-year old simultaneously.

For Eva, for whom music is painful just now. (Btw, I’ll stand by you. I’m not asking you to stand by me in this. I am not that emotionally dependent. Just to clarify. Geeze.)

Click the link for some good shit.

Enid Blyton and the Surgeon

After the CT scan of Eva’s chest, abdomen and pelvis, the radiologist invited us in so he could talk us through the scan. I am becoming more aware of the advantages and disadvantages of being a doctor in this situation; this was a privilege for which I am very thankful – that we did not have to wait for a scan result to be emailed to a GP and for us to wait another few days to receive it.

We walked along the corridor, Luca sitting like a beatific Buddha on my arm, surveying the devoted uniformed radiology staff who were besotted with him. We sat down in front of the bank of screens. The radiologist introduced himself. Again, the tingling and nausea were contrasted with the silent emptiness in the depths of my abdomen; anxiety-screaming anticipation crashing into the dense darkness of unknowningness.

He spoke to us kindly for about 20-30 seconds. I have no recollection of what he said until he said, ‘the scans are fine, by the way.’

I let out some sort of groan of relief and threw my head back. I felt like I sort of collapsed a little, like I had only been maintained by muscular tension for the past days. I squeezed Luca on my lap. Eva seemed less affected by this reassurance than I did, though.

On reflection, I can see two things: firstly was how our agenda as the patient (and patient’s partner) differed from the doctor. I am immensely grateful to him for taking the time to bring us through and talk to us. But our glaring question was, what are we going to do for our family, and in particular Mia and Luca, if Eva has only a few months to live? His was more academic in that he wanted to reassure us by giving us a brief, well-expressed tour through Eva’s radiographic body.

Secondly, the difference in my and Eva’s reaction. As I said previously, I had catastrophised about the horrific CT reports I have seen. Even as he reassuringly pointed out groups of lymph nodes, the architecture of the lungs, the vasculature of the liver, the little pyramid of the adrenal gland on top of the kidneys – I waited with bated breath to see if he would stop or hesitate, seeing some oedema (swelling) or focal lesion that he had perhaps missed on first passing. My limited knowledge of oncology told me that if there was something on the other side of the diaphragm, it was game over. At least, that’s how I felt.

In this journey, I’m going to be straddling these lines: the husband of the patient, not the patient; the husband of the patient who happens to be a doctor, not the doctor. This disease is hers and she is bearing its full brute force. On one hand I’m an observer and external. On the other I am inextricably linked on deep levels, compounded by love and empathy and deep knowledge of this suffering person, and biologically as co-carer for our genetic offspring.

We left with somewhat lighter hearts, and the mood at home was definitely  easier that evening. We laughed with my brother-in-law and his wife. Eva even pulled the cancer card on me: ‘can you close the bedroom door? I’ve got cancer.’ This is the humour that will get us through.

The following day we turned up at the hospital to meet the surgeon. I had received a text from him that morning: ‘Hi Simon, I have to go to theatre for a few hours. Could we make the appointment for 10am. Sorry. I will leave the room open. Please come in and take a seat.’

John (not his real name) poked his head round the door. He was tall, and wore dark blue scrubs and pointed black leather biker boots. He was elderly (his medical certificate hanging on the wall said he graduated in 1967 which must place him in his early 70s), and he carried himself in a relaxed way. His eyes were bright behind silver glasses, and he looked tall and strong and was still a handsome man. He introduced himself, and then headed straight for Luca and spent a considerable amount of time with him first. This seems to be a recurring pattern at appointments thus far.

Over the next hour and a quarter, John was everything one could hope for in a surgeon. He was kind and thoughtful, a great listener, relaxed and knowledgeable. He was a very straight-talker, but philosophical and humble. He explained everything to Eva as often as she wanted, and in different ways. He drew pictures and timelines and scales. He examined her, and then looked through the initial ultrasound and mammograms with us. He walked around and engaged with our baby, and paid me no heed as I changed aromatic nappies on the floor. And what sold it was that he revealed some of himself to us.

‘I came back to Australia from a mid-life crisis at a breast and endocrine unit in the UK, and I preached breast conservation. And it pains me to advise a beautiful young woman like you, that you will need to lose your breast. There are multiple masses, and there is no way we can save anything. I don’t take this lightly, but if you were my daughter, this is what I would advise you. My daughter was in her forties when she got breast cancer, and she told me she wanted both breasts removed immediately. I told her to slow down and think about this. But I’m sorry, you need a total mastectomy.’

I had asked Eva on the way there how she felt about having a mastectomy (which we both fully expected already). She replied at this time she didn’t care, or about losing her hair with chemo. She knows that these feelings may change.

He hugged Eva and shook my hand. We came to the awkward moment where Eva and I had to lay our cards on the table about our recent downgrade in health insurance (essentially nil), and our inability to be able to cover many if any added health costs. John waved his hand.

‘I’ve had three wives, so I’m broke too. But it’s our duty to your family as part of the medical fraternity, and to a beautiful family who is experiencing this unfair tragedy, to treat you here. I’ll do you at the end of my private list, and you’ll be here as my patient on the public ward. That’s if you want me looking after you, that is.’

As a doctor in the public health system I have inadvertently held some prejudices towards the private sector. We had said from day one that we would be keen to be treated in the public system; it’s a known entity, ad removes some of the choice which in this case we found overwhelming. The last thing we wanted to do was to speak to lots of people about who is the ‘best’ surgeon. It reminded me of something I already knew: in the West, no matter in which country we live, the access to public healthcare is exemplary (with one glaring exception, perhaps). We’re privileged with the access to medical education and training, the centres of research, and the safety net for those who are uninsured.

But here was a man whose kindness and concern appeared to be the motivating factor for his practice. He was seeing us on a Saturday morning. We knew that the next time we could have been seen was 9pm on a Tuesday night.

I had already discussed some practicalities with one oncology counterpart at the local hospital where I am based. He too gave willingly of his time, talking me through the process and reassuring me.

Ultimately, where we are treated and by what system is completely secondary. We have been blessed that we have met a beautiful person who has invested in us personally already, who happens to work at a smaller, more easily accessible hospital close to our home.

Last night I continued reading The Enchanted Wood by Enid Blyton with Mia before bed. These words struck me:

Suddenly one of the people of the Rocking Land gave a frightened shout and clutched hold of a nearby tree. A strange wind blew with a low, musical sound. 

Now what’s going on?’ cried Moon-Face.

‘Get hold of a tree! Get hold of a tree! shouted the people round about. ‘When the wind makes that sound it means the whole land is going to tip up sideways and try to roll everyone off. Your only hope is to catch hold of a tree!’

Sure enough, the land was tipping up – not in bits and pieces as it had done before, but the whole of it! It was extraordinary….But not one of them could [catch hold of a tree], for they had left the wood behind and were in a field. Slowly and surely the land tipped sideways, and the children and Moon-Face and the old Saucepan Man began to roll downhill on their cushions. They were not bruised but they were very much frightened. What would happen to them if they rolled right off the land?

Down they went and down, nearer and nearer to the edge of the Rocking Land – and then, quite suddenly, Moon-Face disappeared! One moment he was there – the next he was gone! It was most peculiar.

But in half a minute they heard his voice, lifted up in the greatest excitement. ‘I say, I say, everyone! I’ve fallen down the hole to the ladder that leads to the Faraway Tree, quite by accident. I’ll throw my cushions up through the hole so you’ll know where it is. Roll to it if you can! But hurry!’

The outpouring of love and support and positivity the last days has been completely unexpected and overwhelming. It’s provided a the stability of a Faraway Tree in our Rocking Land. I had not understood until now how expressed kindness and care could be so powerful. There is something rather magical about it. Thank you.