"You've Got Cancer" - Words I Never Heard

Many words were used to theorise, diagnose and describe my condition - and although these tests and descriptions ultimately amounted to a 'cancer' diagnosis, I never actually heard the word.

People say their lives change forever when they hear the three words “you’ve got cancer”. You never forget when you heard the YGC. It makes an indelible mark in time. A point of shock, realisation, uncertainty about the future and no prospect of return to the old normal. 'When did you hear the words YGC?' is an opening question in media interviews and a favourite teaser for magazine articles. YGC brings pain, suffering and death right up into your face. There's no shaking or escaping it. We all have friends and whānau who've been handed the YGC card. We respond by feeling sympathy and sadness; an urge to do something and maybe a sense of uncertainty and even powerlessness on how to broach the subject or talk about it. It seems our responses to cancer are socially prescribed. They're corralled by the many other experiences we've had or know about. 

I'm writing this as someone people might call a ‘cancer survivor’. I dodged the metastasis bullet, but my lesion was malignant nonetheless. But someone forgot to deal me my 'you've got cancer' card. And the YGC is portrayed as such an iconic part of the cancer experience, that it makes me wonder - if no-one told me I have 'cancer', do I really have cancer? Cancer is a bit crummy. Crummier still may be having cancer but not the cache from 'the cancer card'. 

Or, is not being dealt the 'cancer card' in fact liberating? 'Cancer' is such a heavily loaded term - perhaps having my condition talked around rather than named relieves me of typical reactions and preconceived ways of dealing with it?

This post is a reflection on my own experience of how cancer is conceived of, spoken about and tiptoed around. And what impact that had on my own touch of the cancer brush. 

It first started with a pain in my back. I first felt the achey wave soon after an intravenous Iron infusion that I was given in 2018. This pain subsequently came and went. It was sometimes very intense, and sometimes I could go weeks without feeling it. Ibuprofen helped a lot. My first of two visits to the GP was in January 2019, but after blood and urine tests revealed nothing abnormal, I came away with the impression it was just one of those things, an indeterminate phantom pain. After my second visit and further inconclusive tests in September 2019 the GP recommended an ultrasound scan. 

The ultrasound in October 2019 detected a mass growing near my right kidney. The radio-technician remarked it was in 'no-man's land' - unusually located and hard to get a good picture of - and wondered out loud whether it might be a clot. In next-day consultation with my GP, he pooh poohed the clot theory, and waved away our concerns that it might dislodge itself and float along the vein towards my heart. To my husband and I, a clot en-route for the heart sounded like a worst case scenario. But my GP seemed more concerned about another possibility. He seemed unusually sympathetic, tender, regretful and even said ‘I’m sorry about this…’ I wondered: 

Why be sorry if it's just a benign growth or lesion (as he'd described it)? 

I cast my mind back to the junior radiology technician who'd performed my ultra-sound scan – she had asked me, 'has anyone in your family had cancer?'. Was that my first clue? 

Her superior had joined us from behind a 1-way mirror, to twiddle the scanner around herself, looking for a clearer picture. Afterwards at reception, paying $240 for my inconclusive scan, I caught the two of them looking at me - did I imagine they were a bit sheepish and doleful? Like they could see it was going to be bad news, but were secretly glad they didn't have to be the ones to break it to me? Clue number 2 perhaps. 

I was called in to see my GP the very next day (clue number 3?), to talk about the scan. As mentioned above it was all a bit inconclusive; so my GP requested a further scan for me, this time a CT. CTs and MRIs are something I have associated with cancer, so I started to think maybe this was a bit serious. But I decided to go into the public system for the scan - people were conveying concern rather than urgency, after all, so I figured I could wait. But for both my husband and I, our minds were starting to fill with uncertainty and questions. So 2 weeks later I rang my GP to request a booking at a private clinic; just in time though a CT scan appointment at Wellington Hospital had come through for me. 

So began the yo-yo of indistinct pictures, as my body was turned inside out for examination. I had 3 CT scans an MRI and an MRV. Each of them confirmed a mass, sausage-shaped, 5-6cm long. But neither the scans, nor the various blood and urine tests, could pinpoint its growth location. During post-scan clinical appointments in December we got to talk to a specialist registrar, who raised the possibility that we were dealing with a sarcoma - a cancer of soft tissue. But questions about this lesion's location, nature and intent remained. My life and work seemed poised to change at any moment. My questions were endless and unfocussed. I started to Google like mad, got Cancer books out of the library, and downloaded scientific papers on 'sarcomas'. 

The registrar had warned me about what I'd find online chatter about 'sarcomas' - a rare condition, even rarer that someone 'young' (44 years old) should have one, and that the picture was generally grim for recorded cases. Maybe I'd been spared no favours by the withholding of the cancer card. 'Sarcoma' might actually present a fate worse than 'cancer'. 

After all these scans were complete it was at least clear we were dealing with 'upper abdomen' rather than 'upper gastrointestinal'. I met another specialist and his registrar and was told my case was being discussed in sarcoma Multidisciplinary Team Meetings, but the best course of action was probably surgical removal. 

Another clinical consultation was scheduled for March 2020. There didn't seem to be any particular urgency for the operation. But then things were mysteriously accelerated, and surgery was booked for 26th February. 

There was uncertainty around this too - Wellington hospital was full, and I didn't know until the day before whether a bed in ICU would be available for me post-surgery. The surgeon would not perform this ambitious operation without that provision. Work and life adjustments to have months in recovery from surgery is a whole other story that I'll explore later. I fast-forward to the bit where it took cutting my body open to know beyond doubt that I had a cancerous growth. 

I had a fantastic, well-prepared team of surgeons, anaesthetists and nursing staff. I had an epidural line put in pre-surgery and was given a general anaesthetic. To get to the IVC vein, close to my vertebrae, they made a Mercedes Benz incision on my abdomen, following the line of my ribs. I was in theatre for 9 hours. I woke with 48 staples holding the wound together and another 20 holding pipelines for local anaesthetic coiled in place. During the operation they moved my liver and kidney out of the way; peeled my right adrenal gland from the tumour; and removed the growth, taking 10cm of my IVC vein along with it. A gore-tex sheath was stitched in to replace the missing section. I had 5 days of epidural, then 3 days of local anaesthetic to manage the pain. I was discharged after 9 days in hospital. 

A month post-surgery the histology found the growth to be a rare malignant tumour called a leiomyosarcoma. I also got the wonderful post-op report that margins were clear. 

This was the best outcome we could have hoped for! 

Through this nobody told me "You've got cancer" and for a moment I might have felt somehow misled, or cheated by that. I've been through an emotional and physical maelstrom. I had to call on all my reserves of calm. I had to remind myself that Jesus was in this storm with me. I clung to my husband and bent his ear not just on what I was feeling now but what might happen in any of the many possible futures. We were told there was a 5% chance I might die in surgery - so I had to organise things like my last will and testament. I had to exercise gratefulness and let go of what I couldn't control. And had to continue to perform the relatively mundane tasks of life. Right up until we were given a surgery date, I told only my husband about what was going on. We were enough emotional support for each other, but it was a heavy secret for him to bear. Knowing in hindsight that yes, it was a touch of the 'cancer', vindicates all the emotional effort we put into it. 

Medical staff I interacted with may not have said those words, but they nonetheless communicated suspicion of my cancer in subtle ways, and confirmation of it in oblique ways too. My surgeon said to us 'Whether you want to call it malignant or benign, it's not growing in a good place, so we just have to get it out.' Ultimately it didn't matter what we called it. As long as he and his colleague network shared an understanding of how to deal with something called a leiomyosarcoma of the IVC, then they could agree on a course of action. Calling it a cancer doesn't help them deal with it - the opposite, if anything. His specific matter-of-factness drove home that the action is the key thing. And then make another plan from there. 

So I think ultimately, not hearing the YGC, was liberating. My condition was not defined by a 6-letter word and all the baggage c----r carries, but by an experience that was unique to me. Should we all in fact feel spared of the cancer baggage? Is that an invisible policy the medical community is adopting and practicing? The cancer prospect was a burden I happily shared with my husband. But I could and did, absolutely, downplay its potential seriousness when discussing it with whānau and friends. It was, after all, just a mass. While we discussed the prospects of radiotheraphy and chemotherapy post-surgery in the end I just had to deal with 'Snip, snip and away you go.' I had a fantastic medical team with a clear Plan (as well as Plans B, C, D and Plan ETC). It may have only been the third time that this particular surgery had been performed in New Zealand (fortunately I wasn't told this until after the surgery!), but I felt safe and in sure hands. And it came off like a dream. 

So I don't feel cheated that I didn't get to hear the words that some get to bear, but no-one wants to hear. The tumour and everything associated with it was removed. Life - for now - is just a matter of recovering from surgery. At the end of June I'm a little over 4 months post-op. I have been back at work full time for more than 5 weeks, I can jog a little bit, and there's just two small sections of the incision yet to heal. I have bounced back physically and emotionally. The emotional and mental wellbeing of those who care for me is also restored. So perhaps, not having the Big C word used around me is the greatest gift that I, my whānau and friends, could have received. Live life. Mauri ora!