After the CT scan of Eva’s chest, abdomen and pelvis, the radiologist invited us in so he could talk us through the scan. I am becoming more aware of the advantages and disadvantages of being a doctor in this situation; this was a privilege for which I am very thankful – that we did not have to wait for a scan result to be emailed to a GP and for us to wait another few days to receive it.
We walked along the corridor, Luca sitting like a beatific Buddha on my arm, surveying the devoted uniformed radiology staff who were besotted with him. We sat down in front of the bank of screens. The radiologist introduced himself. Again, the tingling and nausea were contrasted with the silent emptiness in the depths of my abdomen; anxiety-screaming anticipation crashing into the dense darkness of unknowningness.
He spoke to us kindly for about 20-30 seconds. I have no recollection of what he said until he said, ‘the scans are fine, by the way.’
I let out some sort of groan of relief and threw my head back. I felt like I sort of collapsed a little, like I had only been maintained by muscular tension for the past days. I squeezed Luca on my lap. Eva seemed less affected by this reassurance than I did, though.
On reflection, I can see two things: firstly was how our agenda as the patient (and patient’s partner) differed from the doctor. I am immensely grateful to him for taking the time to bring us through and talk to us. But our glaring question was, what are we going to do for our family, and in particular Mia and Luca, if Eva has only a few months to live? His was more academic in that he wanted to reassure us by giving us a brief, well-expressed tour through Eva’s radiographic body.
Secondly, the difference in my and Eva’s reaction. As I said previously, I had catastrophised about the horrific CT reports I have seen. Even as he reassuringly pointed out groups of lymph nodes, the architecture of the lungs, the vasculature of the liver, the little pyramid of the adrenal gland on top of the kidneys – I waited with bated breath to see if he would stop or hesitate, seeing some oedema (swelling) or focal lesion that he had perhaps missed on first passing. My limited knowledge of oncology told me that if there was something on the other side of the diaphragm, it was game over. At least, that’s how I felt.
In this journey, I’m going to be straddling these lines: the husband of the patient, not the patient; the husband of the patient who happens to be a doctor, not the doctor. This disease is hers and she is bearing its full brute force. On one hand I’m an observer and external. On the other I am inextricably linked on deep levels, compounded by love and empathy and deep knowledge of this suffering person, and biologically as co-carer for our genetic offspring.
We left with somewhat lighter hearts, and the mood at home was definitely easier that evening. We laughed with my brother-in-law and his wife. Eva even pulled the cancer card on me: ‘can you close the bedroom door? I’ve got cancer.’ This is the humour that will get us through.
The following day we turned up at the hospital to meet the surgeon. I had received a text from him that morning: ‘Hi Simon, I have to go to theatre for a few hours. Could we make the appointment for 10am. Sorry. I will leave the room open. Please come in and take a seat.’
John (not his real name) poked his head round the door. He was tall, and wore dark blue scrubs and pointed black leather biker boots. He was elderly (his medical certificate hanging on the wall said he graduated in 1967 which must place him in his early 70s), and he carried himself in a relaxed way. His eyes were bright behind silver glasses, and he looked tall and strong and was still a handsome man. He introduced himself, and then headed straight for Luca and spent a considerable amount of time with him first. This seems to be a recurring pattern at appointments thus far.
Over the next hour and a quarter, John was everything one could hope for in a surgeon. He was kind and thoughtful, a great listener, relaxed and knowledgeable. He was a very straight-talker, but philosophical and humble. He explained everything to Eva as often as she wanted, and in different ways. He drew pictures and timelines and scales. He examined her, and then looked through the initial ultrasound and mammograms with us. He walked around and engaged with our baby, and paid me no heed as I changed aromatic nappies on the floor. And what sold it was that he revealed some of himself to us.
‘I came back to Australia from a mid-life crisis at a breast and endocrine unit in the UK, and I preached breast conservation. And it pains me to advise a beautiful young woman like you, that you will need to lose your breast. There are multiple masses, and there is no way we can save anything. I don’t take this lightly, but if you were my daughter, this is what I would advise you. My daughter was in her forties when she got breast cancer, and she told me she wanted both breasts removed immediately. I told her to slow down and think about this. But I’m sorry, you need a total mastectomy.’
I had asked Eva on the way there how she felt about having a mastectomy (which we both fully expected already). She replied at this time she didn’t care, or about losing her hair with chemo. She knows that these feelings may change.
He hugged Eva and shook my hand. We came to the awkward moment where Eva and I had to lay our cards on the table about our recent downgrade in health insurance (essentially nil), and our inability to be able to cover many if any added health costs. John waved his hand.
‘I’ve had three wives, so I’m broke too. But it’s our duty to your family as part of the medical fraternity, and to a beautiful family who is experiencing this unfair tragedy, to treat you here. I’ll do you at the end of my private list, and you’ll be here as my patient on the public ward. That’s if you want me looking after you, that is.’
As a doctor in the public health system I have inadvertently held some prejudices towards the private sector. We had said from day one that we would be keen to be treated in the public system; it’s a known entity, ad removes some of the choice which in this case we found overwhelming. The last thing we wanted to do was to speak to lots of people about who is the ‘best’ surgeon. It reminded me of something I already knew: in the West, no matter in which country we live, the access to public healthcare is exemplary (with one glaring exception, perhaps). We’re privileged with the access to medical education and training, the centres of research, and the safety net for those who are uninsured.
But here was a man whose kindness and concern appeared to be the motivating factor for his practice. He was seeing us on a Saturday morning. We knew that the next time we could have been seen was 9pm on a Tuesday night.
I had already discussed some practicalities with one oncology counterpart at the local hospital where I am based. He too gave willingly of his time, talking me through the process and reassuring me.
Ultimately, where we are treated and by what system is completely secondary. We have been blessed that we have met a beautiful person who has invested in us personally already, who happens to work at a smaller, more easily accessible hospital close to our home.
Last night I continued reading The Enchanted Wood by Enid Blyton with Mia before bed. These words struck me:
Suddenly one of the people of the Rocking Land gave a frightened shout and clutched hold of a nearby tree. A strange wind blew with a low, musical sound.
Now what’s going on?’ cried Moon-Face.
‘Get hold of a tree! Get hold of a tree! shouted the people round about. ‘When the wind makes that sound it means the whole land is going to tip up sideways and try to roll everyone off. Your only hope is to catch hold of a tree!’
Sure enough, the land was tipping up – not in bits and pieces as it had done before, but the whole of it! It was extraordinary….But not one of them could [catch hold of a tree], for they had left the wood behind and were in a field. Slowly and surely the land tipped sideways, and the children and Moon-Face and the old Saucepan Man began to roll downhill on their cushions. They were not bruised but they were very much frightened. What would happen to them if they rolled right off the land?
Down they went and down, nearer and nearer to the edge of the Rocking Land – and then, quite suddenly, Moon-Face disappeared! One moment he was there – the next he was gone! It was most peculiar.
But in half a minute they heard his voice, lifted up in the greatest excitement. ‘I say, I say, everyone! I’ve fallen down the hole to the ladder that leads to the Faraway Tree, quite by accident. I’ll throw my cushions up through the hole so you’ll know where it is. Roll to it if you can! But hurry!’
The outpouring of love and support and positivity the last days has been completely unexpected and overwhelming. It’s provided a the stability of a Faraway Tree in our Rocking Land. I had not understood until now how expressed kindness and care could be so powerful. There is something rather magical about it. Thank you.