“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.
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.