Breaking Open

If we deny our happiness, resist our satisfaction,
we lessen the importance of their deprivation.
We must risk delight. We can do without pleasure,
but not delight. Not enjoyment. We must have
the stubbornness to accept our gladness in the ruthless
furnace of this world…

We must admit there will be music despite everything.
We stand at the prow again of a small ship
anchored late at night in the tiny port
looking over to the sleeping island: the waterfront
is three shuttered cafés and one naked light burning.
To hear the faint sound of oars in the silence as a rowboat
comes slowly out and then goes back is truly worth
all the years of sorrow that are to come.

Jack Gilbert, A Brief for the Defense

And so it came, much sooner than expected, a gradual crescendo of unsuspecting pain, dismissed possibilities slowly taking shape into real likelihoods, anxious thoughts tumbling onwards and upwards until, with one nervous phrase by the poor secretary, our fears were confirmed.

It’s been one year since Eva finished radiotherapy for her stage 3b breast cancer. It was preceded by a double mastectomy, and before that four months of dose-dense chemotherapy. In August last year, she had a relatively insignificant-seeming operation to remove her ovaries; a surgical ‘P.S.’ to reduce the likelihood of cancer recurrence, underlined by the bold fact of her new menopausal status. The final third of last year was a slog. For Eva, it was marked by this recovery of her body from the onslaught of treatment it had been subject to that year, with all the complex emotions and psychological chess moves that cancer ‘survivors’ have to make. We were both exhausted mentally and were only too happy to begin 2018 and to see Eva beginning to recover her strength. She did everything she was ‘supposed’to; she continued her healthy lifestyle and got back to doing exercise almost daily. Yoga, pilates, Strength After Breast Cancer weights program. The appointments continued as she sought to manage lymphoedema in the arm from which she’d had 29 lymph nodes removed.

But the niggling possibility never left us. Friends and family were pleased to see us move on from this unsightly, uncomfortable stage of life, into a future burgeoning with new hope and possibility. And so were we, but cautiously so. The facts were burned indelibly on our brains, though: a 36 year-old woman, with no family history of breast cancer, who had discovered a breast lump 17 months prior to her diagnosis of breast cancer, whose tumour mass was 8cm in diameter by time of diagnosis (lost amidst lumpy bumpy lactating breasts), with five lymph nodes positive for cancer, the surgeon’s manner throughout the treatment…the medic in me knew that these were never good prognostic indicators. Eva also presumed that, through her scanty knowledge of cancer prior to her own diagnosis, a recurrence was not unlikely. The ’70/30′ chance of non-recurrence cited by the oncologist was really best-case scenario. Thus far Eva had spectacularly missed every best-case scenario.

So we surfed the blood tests every few months. We’d have a frisson of nerves prior to a follow-up appointment with her surgeon or oncologist, then would feel elated at the ‘normal’ test results. And then the tumour marker, CA 15 3, started to go up. 13. 13. 14. 14. 15. 19. 19. But all below normal – less than 30. When Eva was first diagnosed, her CA 15 3 was 19. This imprecise, crude marker can be raised in all sorts of conditions – benign and malignant – but is also NOT raised in 40% of breast cancers. The doctor in me struggled; if I had a patient whose blood tests were rising but were still below normal, what would I do? Nothing – they are normal. But for a blood test which is a tumour marker, which is imprecise? This is harder.

At one point, the surgeon suggested that ‘if she was his wife’, he would get a PET scan just to monitor for recurrence. This would first require a CT of the chest to justify the decision-making to obtain a PET scan. Eva thought about it and discussed it with her oncologist: should she have extra investigations despite being asymptomatic on the basis of a rising but normal blood test? She decided not to. Had we discovered 3 months ago she had metastases it would have changed nothing, but robbed us of another 3 relatively peaceful months.

And they were. For the first time Eva started consciously imagining three and five and ten years ahead. She took part in new creative interests and explored new opportunities; drawing classes, art therapy, Zumba. She engaged in psychological therapy to navigate this post-cancer world. She thought about possibilities of further postgraduate training. And she was offered a full-time temporary teaching job at her old school, which she accepted.

The low back pain started like one of the many niggles she has experienced throughout treatment. It seemed likely that it was muscular strain as a result of the weights’ training she was doing in her Strength After Breast Cancer program. But it persisted, and more frequently she would walk around with a heat pack tied to her back. Five weeks ago she became very constipated and bloated, and the pain got worse. In a matter of days it was waking her up at night. Friends arrived from abroad; she is a GP and she too – like Eva’s own GP and surgeon – thought that this was likely muscular strain. Two days later I was about to walk out the house to go to work when, for some reason, I said to Eva that I was going to take the morning off and we were going to get a CT of her abdomen. I was more concerned about the sudden-onset bloating and constipation and wanted to rule out abdominal or pelvic pathology. I called the radiology department and booked an ultrasound and a CT. We attended and were told that we would be given the results if we returned two hours later.

We went and had lunch, and then returned. The secretary told us nervously that the radiologist had had to send someone to get Eva’s old CT images to compare with the new ones and that he would give the results to her surgeon directly.

We went round to the surgeon’s office in the hospital. He wasn’t there but his secretary listened to us and said that she would phone him when he was out of theatre and ensure that he spoke to the radiologist.

About thirty minutes later she phoned us. She said that the surgeon wanted to see us at 5.20pm the following day. Eva started panicking and crying. Her first thought was that this was a terrible time of day as it was just before the kids had dinner. She used my phone to phone back the secretary, but inadvertently dialled the surgeon’s personal mobile number which I had saved.

‘Some spots on your bones….I’m flying blind – I haven’t seen the scans myself….your spine….likely secondaries….’

A bone scan two days later confirmed the findings. Multiple vertebrae, ribs, head of left humerus, her skull, and throughout her anterior pelvic girdle. The painful spots were her pelvis – which progressed so rapidly that within the space of a week I had to be helping her sit up out of bed – her L4 vertebra, and the head of her left humerus (shoulder). She had two weeks of radiotherapy to these spots – one hour per day. During the second week one of the spots on one of her left ribs became painful, so she had a further session of high-dose radiotherapy to that – not before it fractured at the tumour site, resulting in a new, more excruciating pain.

So, this is it. Metastatic or secondary breast cancer. In her bones. An incurable disease. All treatment is to slow disease progression. A 22% 5-year survival rate. A 3-year median survival. No return to work – at this time – like she’d planned.

I’m writing this a month and a day after she received this news. We’ve moved from that first week’s state of shock into the next stage. This stage consists of every feeling under the sun, every single day. Hopefulness, peace, fear, disbelief, worry about the kids, the struggle with uncertainty. We have no idea how quickly things will progress. We have no idea whether we should be banning anything but the most positive thoughts of her being in the 1% that lives another ten years. We have no idea how much time we have together as a foursome. We are alternating between overwhelm and normality and emotional numbness. It’s a shitter.

Yet, somehow, we also feel like we are doing…okay. One of the positives of having been a catastrophiser in the past is that reality is rarely as bad as what one has catastrophised about. We are not falling apart. We are still able to laugh (a lot). We still have a weird sense of humour. Death jokes are not taboo. We somehow move in and out of imagining an extended period of time together, with a more rapid change in our foursome’s existence. There are periods of bleakness and fear and of loss and sadness, absolutely. But as Eva said in relation to considering the grief that is to come, ‘It’s easy to turn it into a Susan Sarandon movie in our heads with violins playing as we imagine our motherless children. But the fact is, they are likely to grow up to be fairly normal human beings.’

But we somehow relish the rational black-and-white of it: this is simply a shit hand of genes. Eva’s mum tracked down her dad in Italy, with whom she has had no contact for 33 years; he confirmed that there is no cancer in his family. So beautiful Eva, the offspring of two families with no cancer (except her maternal grandfather who had lung cancer in his 70s), is the one manifesting some epigenetic-mediated phenotype of irate oncogenes.

We know where the future is heading, but just not at what pace. But wait – isn’t that true for all of us? We are all heading in this direction, pace undetermined. Does that fact that we have more knowledge about Eva’s pace disconcert us more? Is it that the mystery of mortality is being thrust so rudely upon us that we have to deal with this so much more acutely?

All of us must choose, daily, to have the stubbornness to accept our gladness in the ruthless furnace of this world…We must admit there will be music despite everything.

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