The Story So Far

(By 'so far' I mean up until diagnosis... for anything after February 2014, you'd need to read the blog section.) 

For some years I'd had low grade, intermittent, gradually increasing pain and stiffness in my right hip and pelvis. Every practitioner I saw assumed it was musculoskeletal and I spent vast amounts of time and money with physiotherapists, osteopaths and so on. Over about the same period of time, I seemed more susceptible to exhaustion than other people, but I never found any useful explanation or treatment for that. When my first daughter was just over two, my body became more foreign to me than it had ever been. I couldn't work out what was wrong, but for the first time I was absolutely sure that something was. I said to my husband in the middle of the night that I thought I had a liver tumour, and that my abdomen was immobile, like there was something wrong there too. I speculated about more tumours, about ectopic pregnancies, cysts of some kind. But in the light of day it all seemed like hypochondria, and I (ridiculously, foolishly) told my GP that I thought I was depressed. If I had taken my sense of my body more seriously it's possible that I would have been diagnosed much earlier and would have a much longer life expectancy. 

By winter 2013, I needed more sleep than my two year old and I could no longer really function. I argued with my husband, I was ineffective in my PhD thesis writing time. I conscientiously went to the physio and the psych every week, but I was totally overwhelmed by parenting and I quit socialising. Then my husband and I realised, initially at my older daughter's insistence(!) that I was pregnant. I'd actually seen my GP in early pregnancy, but in that conversation we attributed my lack of periods to breastfeeding and ill health; and my vomiting to the gastro that my daughter and I struggled with that winter. This makes me realise how much general practitioners are influenced by a patient's own beliefs about their body. Once I knew I was pregnant, all I could think was that I'd somehow mistaken a tiny, perfect baby for a tumour. I felt monstrous, and so very wrong. I lost any confidence I'd had in my body or myself and became seriously anxious. 

As the pregnancy progressed, I dropped into ever more severe pain. I slept on the couch because I could not control my crying in the night, could not stay still. I saw GPs, obstetricians, physiotherapists and osteopaths. My husband and I hired a private midwife to try to reinstate the naturalness of pregnancy and birth. The scattered Greek chorus of health professionals said that I had pelvic instability and almost universally added that I just was not coping with the pain very well. I went to a physio clinic that specialised in pregnancy and pelvises, and had a long series of appointments there. Every treatment exacerbated my pain, but the staff said I must not be following the protocols adequately. Finally they said they couldn't help me, I should just wait until I had had the baby. 

But the pain was phenomenal. My last five weeks of pregnancy are a blur of crying and breathing. When pre-labour began I could finally quantify things a little: my hip/pelvic/leg pain was stronger than contractions and couldn't be managed through breathing and movement the way that contractions could. Our main midwife focussed on listening and openness, but she was unavailable at the time I went into pre-labour, and we got the backup midwife. She is a long-experienced practitioner, but in retrospect, I think my lowest point came when she witnessed my pain and went on insisting that it was normal. 

The pain I lived with everyday was tougher than my first labour and I could not think for myself at all, but Rainer got me into the Women's hospital for a routine appointment with an obstetrician. She had no theories about what was happening, but she really saw my pain, and offered me hospitalisation in the hope that that would be more restful than being at home. She just had a gut feeling that something was badly wrong. She ordered all kinds of imaging, but the imaging department refused most of it on the grounds that I should wait until after the birth. I had one MRI (I might have to write about that elsewhere), and the consultant's report on that was that it was normal (remember that point). By that time I longed to be in hospital, which is something I'd not experienced before. 

I had several days of contractions, but my baby could not get into a good position for birth (in retrospect, because of a large tumour pushing into the birth canal, and because the surrounding muscles and nerves were spasming). A compassionate trainee surgeon managed to get me onto the already overbooked emergency caesarian list ("lets do a sneaky caesar!") and our primary, private midwife raced in on her bicycle, pulled on scrubs and gave additional support. And I was grateful to have a caesar because my sense was that I shouldn't do anything with my pelvis or hip at all. Anouk was born in a glade of clarity and beauty, all the turmoil pushed back into the dark forest, and a good deal of that was to do with the support of our primary midwife, in her moment of grace.

But when the epidural wore off, the pain was very far beyond labour pain. It is likely that the position I was in (flat on my back) caused the tumour to quite seriously compress a bundle of nerves. I was unable to care for my daughter for hours and the nurses said later that it was truly horrible to watch me struggle. The nurses paged the anaesthetists, but they did not respond for perhaps six hours, arguing that post-epidural breakthrough pain should be easily managed. Over and again people would explain to me that pregnancy and birth are painful, and that I should relax. I was so consistently not listened to that I was finally convinced of that 'hyperbolic' claim that pregnant women really are routinely infantilised and ignored; written off as irrational. I was dismissed by so many 'professional' people, over so many months. 

After my daughter's birth, I was allowed to have painkillers, and the staff were shocked at the quantities of opiates that it took to get my pain under control. I felt my tension slowly release and was finally able to really turn my focus to Anouk. She had grown well through most of her gestation, but could not quite get enough nutrients for that final growth spurt before birth (I was losing weight at that time too). She was a good height, but thin, and I felt very distressed at having not been able to provide for her properly. So I was immeasurably glad that I was able to breastfeed her, to finish off the work that I wasn't able to complete during my pregnancy. I could fill her tummy, soften the points where her skull showed through her skin and complete what I thought should properly be her pre-natal development. It was a relatively quick and independent process because I'd learnt a lot (out of necessity) from wonderful support people when I'd struggled to establish effective breastfeeding with my first daughter. And I was gratified that hospital staff insisted that the benefits of breastmilk outweighed the risks that came with the trace amounts of opiates. We had our challenges (I could not really sit up), but figured it out.

I'd finally found a way to hold my ground and I resisted my longing to be home with Rainer and Nelleke and focussed entirely, instead, on caring for Anouk and getting a diagnosis for myself. I repeated my story to every medical team doing their rounds, disciplining myself to be calm, precise and relentless. A silent follower in one of the teams turned out to be a young intern on her second day at work, and apparently just because she was diligent and compassionate, she went against standard practice and requested my original MRI image files (that had already been reported as 'normal'). And when she got them, she came into my room shaking with adrenaline, asking rapid fire questions.

She showed me the mass (that we now know as the original tumour), and it was around 9cm in diameter, taking up a quarter of the screen and running over the edge of the image. "Does that look like a mass to you?! Can you see it?!" she demanded of me, outraged and shaking. She found the trainee surgeon who'd done my caesarian in the tea room, and the surgeon, also a young woman, said that she'd felt a large, hard mass behind my peritoneum, but that her supervisor didn't think it was significant and didn't include it in the notes.

So my original mass was not observed by senior staff who'd analysed a picture of it and felt it's solidity in the back of my pelvis. I was diagnosed only because those two young women noticed things outside their area of responsibility, kept note of obscure problems and talked to each other in the tea room. This isn't just chancy, it's about being alert and perceptive, and I am profoundly grateful to those women. I told them that all week, day after day, while they tried to make me see that the news wasn't actually very good. To the credit of the senior obstetric staff, they were absolutely open about their oversight and their admiration for the initiative of the junior staff. They apologised formally to me and the treatment I received from then onwards was impeccable. The only gap is the silence from the consultant who interpreted the MRI, but I know that a formal complaint was made about that. 

A massive benefit of that initial diagnosis - the presence of a mass - was that my sanity was restored to me. I had believed somehow, that pregnancy and cancer were contradictory, that I had been shamefully wrong in my belief that I had a tumour. But, I repeated to myself for days and nights: two contradictory conditions could indeed occur simultaneously. I had a powerful sense of coming home to myself every time I reinforced the idea. Two contradictory conditions had occurred simultaneously. I had a pregnancy and a tumour. I had done my best  Anouk and I had both survived extraordinarily well. At the time I attributed it mostly to her life force (she was conceived in a chancy way too), but increasingly I feel like the struggles I've had in raising my daughters this far are the most meaningful work I've done in my life. I felt my pride recently when a doctor told me it was impossible to carry a pregnancy with a 'tumour like that' and I said I'd carried Anouk to term when it was only 2cm smaller. There's a strength in my battered body, after all.  

Anyway, once the medical teams agreed that I had a large retroperitoneal mass, I had CT scans and a chest x-ray, a biopsy, and then a port inserted. With each procedure, I consulted a pharmacist who specialises in breastfeeding medicine and we figured out ways to avoid exposing my daughter to problematic contrast dyes and anaesthetics. I kept focussed on this everyday work - caring for Anouk, getting a diagnosis - and distracted myself from the possibilities for as long as possible

I received my diagnosis from my oncologist, who now feels like a key person in my life. I was sitting in a wheel chair, with my baby in my arms, my husband by my side and my older daughter at creche nearby. We'd originally chosen the Women's hospital because Rainer and I knew the geography of that area so deeply that we thought it would help orientate and comfort both of us if labour was hard. I felt the locatedness of each of my darlings very intensely at the moment I received my diagnosis, more so than anytime connected to childbirth. My oncologist promised that I would never have another week like the one I'd just lived through (a birth plus a terminal diagnosis!) and I was already sceptical, thinking that death must be worse. But she helped me to understand, to make well-informed, if grief-filled, decisions. I weaned Anouk and began chemotherapy. She was a day shy of three weeks old.