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.)