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
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.
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.