You should blog about your cancer journey. Eleanor suggested it, as she, Joe and I waited outside the pathology room at St Vincents on the 5th of July 2019. I was to have a blood test before a biopsy to determine whether I had lung cancer. I’ve only recently discovered that there were tears as soon as the door shut behind me – we’d been on a bit of a roller coaster thus far.
It’s what you do they said. So why not? It’s a good way to remember the course of events over my annus horribilis which ran from August 2018 to August 2019 – in fact from MIFF 2018 to MIFF 2019. I didn’t have the energy or desire to do it on a daily or even weekly basis during the process – I don’t know how those who do, manage it. So here is the whole story in one mega post.
Where to start? For Joe it began on Wednesday the 5th of December 2018 when the nurse wheeling me from the ultrasound room to the emergency department at St Vincent’s Hospital asked him what cancer does your wife have? He was startled as no-one had mentioned anything about cancer to either of us at that stage. He didn’t even correct her error in describing me as a ‘wife’.
For the children is started later that afternoon, when it became clear that their mother’s time at the hospital was going way beyond an ultrasound. The family WhatsApp lit up resulting in an early departure from work for Eleanor and a flight from Canberra booked by Patrick.
For me it should have started with the pep talk from the consultant in emergency (they seem not to call them doctors anymore; I don’t know why, consultants sounds more like some efficiency expert from the big four consultancy firms and doesn’t inspire confidence). We never did discover who he was or his role; he just appeared at my cubicle and told us to stay calm, it (whatever that might be) was a lot to take in (no-one had said anything to us at all) but we must forget everything we thought we knew about cancer, great strides had been made in personally targeting treatments to patients, we were on a long journey of discovery! Then he disappeared.
I didn’t think much about cancer at all at that stage. As I said a couple of times to Joe, I was just pleased they had found something wrong with me and were proceeding to deal with it. Because I had been suffering severe pain in my abdomen for almost three weeks; after ongoing lower level pain a long time. This is confirmed in Joe’s WhatsApp message to Patrick and Eleanor from the hospital.
Earlier that Wednesday I’d had an ultrasound of my abdomen and, nearing the end of quite a long session, the technician had said Oh! in a certain tone and gone off to see the consultant. Who turned out to be a very young and reticent young man who told me I needed to go to emergency; nothing more. We assumed something had been found on the ultrasound and so it turned out. They were anxious that my condition not deteriorate before an operation to remove whatever it was and so I didn’t have any tests beforehand.
The next day the family reunited with Patrick home and surgery imminent. Thereafter I saw each family member every day for different periods. Patrick and Eleanor coming in on their way to and from work for different lengths of time. Joe mostly coming in and spending the day with me. They were terrific. I was only alone first thing in the morning and last thing at night.
Before my operation I handed my phone over to Eleanor to handle communications with extended family and friends. It’s tricky in a situation like this, I wanted my friends to hear from me rather than via the grapevine so Eleanor was charged with letting those who knew something was up – there were quite a few- with relevant details and they’ve all since expressed their appreciation at being kept informed. I laughed when I got a text from my friend Terry a day before I left hospital, when I was up to dealing with my own telephone communication- asking Are you all right? What’s going on? By that stage I was all right, but there’d been a lot going on.
Looking back I discover it was the 6th of August 2018 when I first presented to my GP with stomach pains. I self diagnosed, and she did not demur, giardia from which I had suffered, and been successfully treated by antibiotics, in 2016. I was prescribed another course of the same. Here’s a picture of me taken just after that, on the 8th of August, at the start of the 2018 film festival. I’m interested to know how I looked over the following weeks. Here I don’t think I look particularly unwell; a bit tired perhaps.
A little over a week later, on the 15th of August, I was back to say this treatment hadn’t worked. My GP suggested it may be the over-production of acid in my stomach following an H Pylori infection I’d suffered earlier in the year, being pronounced clear of it after a breath test on the 19th of June. She prescribed medicine to deal with this condition. I think she actually said this should clear up any pain in a couple of days but I can’t be sure about that. In any event I went home and contracted a very severe cold and was preoccupied with the impact of cold tablets on the medication. I thought maybe the cold was why there was no immediate improvement in the abdominal pain.
This is where I get into trouble with my family – why didn’t I go back and say the pain’s still there and getting worse! We’ll never know. Hypotheses are (1) I have a high pain threshold – who knows what that is – I’m certainly not going to scientifically test the theory even if it’s possible (2) I was in denial about my condition – perhaps a more plausible explanation.
Whatever the cause, I’m appalled at the length of time that I continued in pain without seeking medical treatment. And this behaviour could have cost me my life. Memo to self (and others) don’t do this again.
In my defence, as I’m quick to point out, no-one else pressed me to go back to the doctor even when I made no secret of the fact that I was in pain. People would ask me how I was and I’d tell them, Oh I’m fine, but I have terrible pains in my tummy. People would nod sympathetically and the conversation would move on.
I continued my normal life – which involves a lot of activity. All the while feeling varying levels of pain. MIFF 2018 was on between the 2nd and 19th of August so I was fitting my doctor’s appointments around screenings. I saw 46 films, tweeting my mini reviews as usual. I reasoned if you’re not feeling well sitting in a cinema is as good a place to be as any.
After the festival our round of cultural activities continued. On the 25th of August we went to a wonderful concert performance of Die Walkure at the Arts Centre – the splendour of the music dulling the pain in my tummy! Eleanor and I went to hear Ronan Farrow at the Athenaeum on the 30th of September after which we stood in line and got his book signed and then went to Marion for dinner with Joe, Patrick and Sam. We were celebrating Father’s Day. I’m interested in how I looked over this period as I have abdominal pains and am taking medicine that is having no discernible effect but still going about as normal. Here I am with Ronan’s book; not much sign of discomfort.
September continued the same; my usual retired life. Lots of dinners with people – Jane, Brian and Onella, John and Sue – and lunches – Terry, Kerry, Linda, Jen, Margy, Jane, Breen. At all of them I bored those I was with, and myself, with earnest descriptions of the pain I was suffering and proffering different explanations. I was walking once a day every week with Linda over this period. She was convinced I had ovarian cancer although she didn’t say so explicitly. Of all my contacts she was the most persistent in saying I should seek medical treatment until overwhelmed by my passive resistance she stopped mentioning it.
We went to see the opera Pelleas and Melisande at the Palais on the 11th of October through which I was so uncomfortable I wondered whether it contributed to my disdain for the work. Afterwards I couldn’t stand and wait for the tram, or contemplate the walk from tram to home because of the pain so Joe booked an Uber. I took these photos for something to do while we waited. First, looking back towards the Palais.
On the 15th of October when we ran into an old OH&S colleague, Michael Pitcher, at the Silk Road Ensemble performance during the Melbourne Festival I sat with him beforehand explaining at length my tummy troubles. Michael nodded sympathetically.
We had the usual celebration for the boys’ October birthdays with a dinner in Carlton. This was followed by a separate celebratory dinner for Joe’s birthday at Navi. Here’s the menu. Paradoxically through this period I think I ate more than usual as eating seemed to relieve the pain – took my mind off it at any rate.
We went to Ballarat for the big Arts biennale on the week-end of the 20th – 21st October. All the while I’m not suffering in silence. But nor am I going back to the doctor. This is the only picture of me I could find. Do I look sick?
It was a hot day and we were plied with little tastes of a lot of white wine and pinot noir. That night I had terrible pains in my tummy leaving me sleepless and going back and forth to the bathroom to not much effect. I put it down to the wine having exacerbated what I believed was an infection in my abdomen. Resolved to drink less (familiar resolution).
I was meant to go back to the pre-poll booth on the 19th of November, but I emailed Ray, our booth captain, to say I was too sick to do so. There’s a doctor’s appointment marked in my diary for the same day but I have no memory of it at all and don’t think I went. Maybe my doctor wasn’t available because my next appointment, which I did attend, was two weeks later on the the 3rd of December.
It was over the course of the week starting Monday the 19th I realised I was in serious trouble. I began cancelling things. A dinner at Laura due on the 10th of December, long anticipated and looked forward to, was the first to go. I got all dressed up to attend my old LGV team’s Christmas function mid week but rang in the late afternoon to reluctantly and apologetically cancel. I was especially concerned not to have contributed my bit to the Kris Kringle. – Colin missed out! On Thursday the 22nd of November we went to The Meistersingers of Nuremberg and I was in so much pain afterwards I couldn’t walk to the taxi rank. I didn’t go to the AMIEU Christmas Party the next day, on the 23rd of November – an event I always look forward to for catching up with old comrades.
I did drag myself out of the house to hand-out on election day, Saturday the 24th of November, at the North Fitzroy Primary School. It was a terrible, wet day and I said to Joe I wasn’t sure I could manage to complete the full hour I’d signed up for. I asked him to come straight from Gold Street as soon as he could to replace me. In the event, hearing I was not in great shape, Anne H-D got her husband to take over from me after half an hour and I went home. Where I cooked a meal for people coming to watch the election results come in. I remember standing at the kitchen bench from time to time leaning over and breathing deeply to manage the pain. I didn’t eat or drink anything later on – as the wonderful results, especially Richmond, rolled in.
Astonishingly I did go to some things at the end of the following week. Lunch with Breen and then a Wheeler Centre evening with Eric Idle on Friday the 30th of November. I don’t know who came with me to see Eric or what possessed me to go; presumably because I had booked and paid in advance. He was fine, but all his anecdotes have been polished to smithereens and come out a bit pat. Here’s a photo of him singing The Bright Side of Life.
On Saturday, the 1st of December Joe and I went to see Olafur Arnalds where we ran into friends John and Sandra. We had a long discussion about my health issues as Sandra has suffered from internal tummy problems for years. She suggested a miracle over-the-counter medication that had just been suggested for her condition. On the Sunday evening Eleanor rang her friend Saskia who is a nurse. I think she’d been suggesting this for a while but I’d been resistant. Eleanor asked what was to become a very familiar question; what’s the level of pain out of 10? I had to confess it was 10. Get to St Vs emergency pronto! said Saskia. I can’t really explain why I didn’t; beyond thinking I’m going to see my doctor tomorrow and she’ll deal with it. Denial? Probably.
On Monday the 3rd of December I had breakfast at Cavallini’s with my former boss, Alison. She’d had a bit of a medical incident before meeting me and we discussed our various ailments and then I went off to my doctor who immediately told me to organise an ultrasound. Looking back I assume she’d have done this weeks ago had she known the medicine she’d prescribed had had no impact whatsoever on my pain. Even then I went home and waited until the Tuesday to organise an ultrasound the following day. Joe, who’d been in Canberra on the Tuesday, was appalled at my appearance when he returned home and would have taken me straight to hospital only I demurred saying I had my appointment ready for the morrow.
That’s how we came to be in the emergency department at St Vincent’s Hospital on Wednesday the 5th of December. From there I was taken to a ward and prepared for surgery. I suppose the haste with which the medicos were moving should have made me anxious but it didn’t. I was just pleased my pain was finally being treated. The surgical team were always very clear. I had something in my abdomen. They didn’t know what it was and wouldn’t until they got it out which was their present pre-occupation -its weight indicated it could be a tumour or it could be my appendix but it was in the wrong spot for an appendix.
I was eventually operated on some time on Thursday the 6th of December. A shorter operation than the surgeons expected but long enough for my family. They took out a spaghetti like mess roughly the size of a soccer ball – really! They’d removed about 20cm of bowel but were able to stitch it back together so there was no need for a bag; which I’d been warned may have been an outcome. That was a relief. Once again the surgical team was clear. They didn’t know what it was. They’d sent it to the lab and would get results back early next week. It could be a tumour – it ‘s weight indicated it might be that- or it could be an appendix but it was in the wrong position for an appendix.
I didn’t really contemplate having cancer although I suppose it must have been at the back of my mind. Over the week-end after the operation I was pre-occupied with terrible nausea. Caused, I was told, by my gut closing down and not processing the bile that continued to be produced. A common enough response to this operation – I wish I’d been fore-warned and better still preventive action taken. I spent the worst night of my life on Saturday the 8th being nauseous and throwing up from time to time. I seriously wondered whether I would be able to survive the night.
To help I tried listing all the things that were good about my life. A version of counting sheep and like counting sheep I had to keep going back to the beginning – all of my family being happy with their jobs, my life as a retiree, specifically re-connecting with old friends and building deeper friendships with existing ones, creating a wonderful garden etc. Then back to the start! Maybe I was contemplating that life being shorter than expected, or maybe I was just trying to get through the night. I do remember thinking if this is what chemotherapy is like it’s terrible. Either way my way of dealing with it helped. Here’s Joe’s description to the children the next day, Sunday the 9th of December.
That same morning the nurses put a tube through my nose – unpleasant procedure but immediate relief. Here I am after that – feeling much better, albeit looking a bit funny with the tube attached to my nose – saved my life that tube!
Nausea sorted, the the emphasis was on making sure my system was working normally and there was much interest and conversation about farts and bowel movements. By Monday I was moving more comfortably. I don’t believe I was thinking too much about whether what had been removed was a tumour or not. I’m not sure how they were doing at home – they didn’t report that back to me. And, being rather pre-occupied with myself, I didn’t ask. Here I am on the road to recovery on Monday the 10th of December.
I didn’t remember saying so, but as that message from Joe on the 9th of December notes, apparently I wanted everyone to be at the hospital when I got the results back from the laboratory. But on Tuesday the 11th of December at our early morning catch up with the surgeons I was told that I was lucky, the mess that had been removed from my bowel was indeed my appendix. Here’s my message to the family and their responses. Patrick’s response which you can’t see in the photo was That’s so good. The surgeon said, You must have had severe pain at some stage. I don’t know when; maybe in October at Pelleas at the Palais? Or the Trentham wine-tasting in November or at the Meistersingers? They are the times I remember experiencing intense pain. Otherwise it was just a dull burn on continuous pain. We’ll never know.
Over the course of the Tuesday we wondered what perforated appendix meant. Next morning I had this conversation with the surgeon; Question, Is a perforated appendix a burst appendix? Answer, Yes. Question, Don’t burst appendixes kill people? Answer, Yes. Apparently my bowel had wrapped around the perforated appendix to protect itself. I was very lucky. This would have happened over time; so maybe since mid August. The infection was more recent ; so maybe since the wine-tasting. Who knows?
It was on the Sunday or Monday that the surgeon called Nick told me that I had a couple of nodes on the lung. He thought they may have been there for a long time and that I would have known about them. I didn’t. Self diagnosing again I thought maybe it was scarring from pneumonia I’d had years ago. He asked whether I’d ever smoked, got puffed walking, had a persistent cough. No to all of the above. A full body CAT scan and an X-ray were required. I recall Patrick had asked earlier Did she get the X-ray? I had the scan on the 10th of December and remember having the X-ray but am not sure when. On Wednesday the 12th of December Dr Nick came back, really to say how pleased he was that it was an appendix and not a tumour. He mentioned in passing that the nodes on the lung may have been the result of the infection they’d removed and not long-standing as he’d suggested. They would look carefully at the scans but it was unlikely I’d need another one. Later still he suggested I would have another scan in the new year just to check the nodes were not getting any bigger.
This is when my real cancer journey began. Although we didn’t know it at the time.
My reflections on this experience, prompted by writing this, are first how easy it is to accept the unacceptable. It’s quite frankly ridiculous that I spent all that time with pain and not seeking treatment. It reminds me of the story Oliver Sachs told about people with sleeping sickness. Family members just said to him That’s Uncle Bob he’s been standing in the corner asleep for months/years. Here was Jenny, sitting on the couch, complaining about pains in her tummy – when she wasn’t gallivanting around.
Second, how terrific my family was. Everyone leapt in and played their part supporting me. I didn’t truly appreciate it at the time because, as I said, I was pre-occupied with myself and they let me be! I think it’s much easier being the patient than the patient’s loved ones. Being at the centre of it all you just concentrate on the minutiae – pain relief, sleeping (or not), eating (or not), getting out of bed, blood tests (daily – they hurt), farts and movements, scans and ex-rays. It’s exhausting but stops you thinking too much.
And I appreciated the support of friends as reported back to me by Eleanor. I’ve always known how important friendships are in my life and this experience confirmed it. The only time I cried though was when I received these flowers. They came from my old work team. Those tears surprised me. I love my old work team but they’re not my closest friends. I think that’s why I cried. Knowing that others, outside my immediate circle, cared enough to send me something. These were beautiful to look at and smelt wonderful – tuberoses – and they lasted the whole time I was in hospital.
The other thing that has been much discussed in relation to my experience is the relationship between doctor and patient and the responsibilities of doctors. Some people (I won’t name names) were very critical of my GP but I wasn’t. I didn’t ever front up to her and say I am suffering catastrophic pain. Not even on the Monday after I’d told Saskia it was 10 out of 10. And as soon as she new that the medication she gave me for an infection hadn’t worked she ordered the ultrasound. Which I’m sure she would have done months earlier if I’d told her. Communication is a two way street!
Back home life resumed. I didn’t give any thought to the nodes on the lung. I did go back to my GP because I was having pains in my tummy which turned out to be a normal process of my gut adjusting post operation. But, being extra cautious – here we go I thought, now I’m going to be over serviced medically – she ordered a CAT scan. Which suited as the one my colorectal surgeons had wanted. I had that on the 23rd of January 2019. Having never had a scan in my life I’ve now had three in the space of two months. After that I fronted up for my surgery review on the 18th of February at the D01 Blue Clinic, Building D (Daly Wing) at St Vincent’s – a place with which I’m now very familiar. I like it – the whole gamut of humanity in the one room. Quite chaotic but the nurses and doctors calm and committed. Joe and Eleanor insisted on accompanying me – they don’t trust me with doctors any more. I was a bit embarrassed about having a whole team of people squeezing into the small consulting room.
The appointment was with the actual surgeon who’d performed my operation. He was was focussed on the scar which he confirmed was healing well and with my overall recovery which was also fine. He also told me there was no problem with the nodes on my lung as the January scan had not showed any growth. He asked me about smoking and coughing etc. To which I gave the same answer – no, no, no. So far so good. But the scan had showed up something on my liver and I would need to have that checked out. He reassured me that it was probably just a cyst and nothing to worry about. Terrific, I thought, this is what you get when you’re in the hands of doctors.
I was a bit worried about my liver, but not so much that I didn’t continue to enjoy a drink as I am here with my friend Jen at March at Cutler & Co the day before my 65th birthday during the Melbourne Food & Wine Festival. As far as I’m concerned I am fit and well and fully recovered from my medical travails.
I was back at St Vincents on the 24th of April for an ultrasound to check out my liver. Eleanor came with me and I was anxious about the time she was taking off work. I had to drink a special liquid over a set period – I think half an hour or maybe it was a whole hour – and then undergo the procedure. This took what seemed ages with me twisting from side to side and breathing in and out as instructed. I was appalled when the technician said she needed to check the pictures with her supervisor and then even more worried when the supervisor who came in and repeated the whole lot procedure. I was convinced there was an issue with my liver. Resolved to stop drinking (familiar resolution).
Back to the Blue Clinic on the 13th of May; Eleanor with me again. By this stage I’ve decided it’s very good to have my support team – either individually or together – with me at these appointments. Afterwards we labelled the doctor, Dr Grumpy. He barely looked at us, staring at the computer screen for the entire time. He asked the same series of questions about smoking, walking and coughing to which the answers were no, no, no. He harrumphed when I reported that at my earlier post surgery review I’d been told that all was hunky dory with the nodes on the lung. Well that’s not right he barked. He told us he would raise my case at the next meeting of radiographers and get back to me. In passing he said there was nothing wrong with my liver. A tiny voice at the back of my brain said Good, I can keep drinking. Eleanor and I were a little stunned as we walked down to the European for a coffee and debrief. Well, she said, It’s not completely good but it’s not completely bad either.
The Saturday after that gloomy consultation, on the 17th of May I was back at another pre-poll. This time in support of the Victorian Labor Senate team. given our House of Reps candidate had resigned in disgrace. We were in Richmond where there were lots of absentee voters from the ‘burbs and none of them very interested in our State-wide How To Vote information either. Gloomy prognosis all around, but stalwarts like David and I kept cheerful.
I heard nothing more from the hospital, so on the 30th of May I visited my GP – no more denial! She hadn’t seen any of the scans and said she’d contact the hospital, get hold of them and follow up. She told me there was a test called a PET scan that would rule out cancer, so probably best to have it. Subsequently I got a letter advising of an appointment at the Blue Clinic on the 21st of June. This time I was to see a lung specialist, not a colorectal surgeon. Joe came with me – they’re taking it in turns now! This doctor, whose name I can’t recall was very nice, apologetic about me falling through the cracks at the clinic and full of praise for Virginia for following up. She later told me that she had merely read the scan on which was written, at the bottom of the report, This patient should have a PET Scan. Hardly required much forensic skill. I wondered if it was so clear why Dr Grumpy hadn’t acted on that advice.
Our lung specialist immediately demonstrated his expertise. He’d recognised that one of the nodes was of concern and as soon as he saw it. He brushed aside the views of my earlier surgeons – they’re colorectal specialists! He showed us on the computer screen and there it was – very small but completely solid and round and attached to the edge of the lung. All of which was indicative. There was a second jagged looking one that you could see through that was not of concern – maybe that was my pneumonia scarring. He asked me the series of questions that I’d been asked ever since the nodes were noticed. Ever been a smoker – no. Get puffed going up hill – no. On the flat – no. Persistent cough – no. But he added another; Any cancer in the family – n…, wait, yes, quite a bit. Off for a PET scan then. He made it for the following Tuesday. So quickly I thought, Well there you go, I’ve got lung cancer.
Here I am at St V’s on the 25th of June for the PET scan, about to be injected with the radioactive sugar that is attracted to over-working – therefore likely cancer – cells. I’d taken a book – Stephen Fry, The Ode Less Travelled: Unlocking The Poet Within -all set to read for what I thought was going to be a lengthy process.
They give you very mixed messages in hospitals. Immediately after this photo was taken, despite the technician assuring me the levels of radiation to which I was being exposed was tiny, Joe was dismissed from the room because of the radiation level. And once I was injected I wasn’t allowed to read. I wonder why not – it seemed strange. There was a telly there but I didn’t watch. I think it took about an hour. From there into the scanning machine. It seemed to me to be smaller and more streamlined than the CAT scanning machine and there were no pre-recorded instructions being shouted at you. Just the jerking of the machine as it took pictures of different sections.
There was a photo of a blue sky and clouds to look at. You had to hold your arms above your head and they tied them loosely, which was a help after half an hour. I think the whole thing took about an hour. I thought about my garden in my head while this was going on. I decided to remove the apple tree, the camellia bush and the quince tree; all of which have been creating a food trail for the possum(s). I haven’t had an apple, camellia blossom or quince for about three years. I’ve since acted on this revelatory insight, except I just halved the camellia , and it’s opened up the garden beautifully. We await any possum related results. Either way, that hour was well spent. Here’ the outcome of my deliberations.
Outside I was asked whether I wanted the results to go to my GP to which I answered yes. On the following Monday, the 1st of July, I was in Clifton Hill with my sister and with her encouragement I rang to see whether I could see my doctor to get the PET scan results. Serendipitously she was available and so I went. She didn’t have results but said she’d follow up and let me know if, and when she did. That Wednesday (the 3rd of July) I was preparing to leave for lunch with a former work colleague, Kerry, when I noticed a message from Dr V. Yes, she said in the voicemail, it is cancer. The good news is it’s very small. Call me. Some people are critical of her for leaving a voicemail message with this news but I was pleased. It was what I had asked her to do and getting the news this way gave me time to let the information sink in. I sat on the couch in the lounge for a little while in a bit of a daze thinking, Well, there you go, I’ve got lung cancer, isn’t that amazing.
Eventually, as requested, I rang Dr V who just repeated her news, emphasising the positive that it was found early. She told me she thought long and hard before leaving a voice-mail message but I told her I was pleased she had. Then I rang Joe and the kids saying much the same as my doctor had told me – bad that I have lung cancer, but good that it’s been found. They didn’t seem particularly convinced about that. Kerry had had her own cancer scare a little while back – which turned out to be a false alarm – so she had a sense of what I was feeling. Which was mostly relief that they had found this – all by accident really.
If I hadn’t had the appendix and the associated scans, I wouldn’t have known and this thing would have been growing quietly all the while. I also told my brother, a heavy smoker, and my sister of the diagnosis. My brother noted the irony that it was me with this diagnosis and not him.
I’m told lung cancer is common in women in their sixties who’ve never smoked. I knew this from the experience of a slightly older work and ALP colleague, Lynne, who died in the middle of this year and to whose funeral I had gone on the 24th of June. She’d gone to the doctor after having a persistent cough for a period of time and her cancer was well established by the time she knew about it. Notwithstanding which she had a further six active years after treatment. At her funeral Lynne’s friends praised her openness about her condition, saying her approach had made it easier for them to support her. I took this information to heart because it accords with my temperament and it was nice to know that being open was a good thing.
On Thursday the 4th of July I had lunch with former boss and friend Terry, who knew I had been having these tests and with whom I discussed the result. We had a couple of wines. Afterwards I sat outside the European and rang my friends, basically the people who had been following my appendix drama, to tell them of my diagnosis. I don’t really know what possessed me to do this. Perhaps knowing how Lynne’s friends had felt. Also I’ve always told my children a problem shared is a problem halved. It really does sum up my approach to life. I’ve never been one of those quiet, mysterious types – I like being open and sharing both good and bad news. Now these friends who’d been pleased with my recovery from a burst appendix expressed astonishment and sympathy. A problem shared is a problem halved – that’s what I felt. I That same evening Joe and I went to a performance by the pianist Lang Lang which was wonderful. I sat there in the concert hall thinking from time to time; how extraordinary, I have lung cancer!
Back we went to the Blue Clinic on Friday the 5th of July. Both Joe and Eleanor with me. This time we were seen by a young, energetic woman who set an unfortunate tone with her opening question What has my colleague already told you? I don’t like trick questions at the best of times but especially not in this situation. When I blurted out that my GP had told me the PET Scan had revealed I had lung cancer, she exclaimed Oh no! It’s too early to use the word cancer. Here was I believing, and assuring others, that cancer is no longer a fearful word – having revived my memory of our mysterious consultant in the emergency department last December. Our latest surgeon went on to tell us a long and involved story about a person whose PET Scan had come out red (I never did get told what the difference between yellow and red on a PET Scan indicates – red sounds worse) and who had been told he definitely had cancer only to discover later that it was a fungal infection.
Really doctors should know that the unusual experience of a small number of patients isn’t of much interest to those of us dealing with our own diagnosis. There’s a funny coda to this story. I started to tell a friend the details of this misdiagnosis and before I got to the punch line about the fungal infection she interrupted to say she knew a man who’d been told he had cancer and all his friends had conducted tearful final moments with him only to discover later that he only had a fungal infection! Small world Melbourne.
I was told we needed a biopsy before a final diagnosis could be definitively made and sent off to have a blood test. That’s where we were when the idea of this blog was first raised. I then had decide whether to tell the people I’d phoned on Thursday about this new advice, but in the end decided against. I was pretty sure by this stage I had lung cancer. After this very unsatisfactory appointment Joe and I joined our old friend Bill at CitriCo, a Peruvian restaurant in Clifton Hill, where the three of us drank three bottles of very good red wine and got weepy about the importance of friendships and living a good life. A memorable afternoon.
I had the biopsy I had on the 12th of July. Once again, it would help being told what these tests entail. My test was scheduled for the morning and I arrived at 9am. As I was being taken from the waiting room I asked the nurse whether it was worthwhile taking a book; after all at my last test I wasn’t allowed to read. She didn’t know how long the test would take, maybe two hours, and didn’t know whether reading would be allowed. I took it anyway. I left everything else, including my phone, with Joe. As it turned out, the biopsy itself took only a short time. I was given a light anaesthetic while they used a CAT scan to guide a needle to take the sample while I lay face down. Not uncomfortable and by this stage I was quite familiar with the drill – lie at this angle, breathe in, breathe out. It must have taken a couple of hours including waiting around beforehand. Afterwards I was taken upstairs to a ward where I had to lie flat on my back for four hours! Thank goodness I had Scrublands by Chris Hammer. It’s a page turner of a detective story set during a drought in a township on the Murray River and I finished it in the day. It was good and I was very pleased to have it. Others had their phones and had I known I could have been reading my twitter feed or using WhatsApp to talk to my family. Hospital communication is frustrating.
We weren’t formally told the results of the biopsy until my next consultation in the Blue Clinic the following week, on Friday 19th of July. By this time it was old news for us all. This time the consultant / surgeon was Dr A who bounced into the waiting room and called my name dressed in a very stylish three piece suit. I was impressed. As Joe said later, we all (Eleanor was with us) knew the minute we entered the room that the diagnosis was lung cancer. Both from Dr A’s demeanour and the fact he had an offsider on hand ready to take us to his rooms. It’s strange how basic, straight-forward information like you have a possible tumour in your bowel and you have lung cancer is danced around. On both occasions we had inferred the information before anyone explicitly told us anything. Dr A’s opening line was, Well you know the biopsy results don’t you. Well we did, but no-one had yet told us in so many words.
I asked what our treatment options were and was told that if it was possible an operation was the best treatment available. The problem with most cancers is they are discovered when successful operations are not possible. Dr A said he would take out the smallest section of lung possible (in case he ever needed to operate on the lung again). It would be keyhole surgery – a wedge resection. He would take out the lymph nodes as well and if they had any cancer cells in them I would need chemotherapy. He thought that unlikely. He said there were other shadows on the lung and started to draw them and then decided against it. There was no way of saying whether they would turn into cancers. He thought it was likely I’d had the cancer for around eighteen months and that it was probably genetic. He concluded by saying that he and I would grow old together. I took great heart from that throw away comment!
We had a discussion about the respective merits of the public versus private systems. I was quite happy with the public for my appendix but was not so keen on seeing different doctors at the public clinic. We were told the public would be just as quick for the timing of an operation but only if we went private would I be under the sole care of Naveed. Which is why we decided to go private. He could operate on the 29th of July and so off we went with his offsider to his rooms in St Vincents Private to do the paperwork. After that, or before I can’t quite remember, I did a breath test; unexpectedly hard but at which I later learned I had performed well.
So back to St Vincents on Monday the 29th of July for my surgery. With my whole support team – Joe and Eleanor, Patrick participating via WhatsApp. The very worst thing about the day was the waiting. I was disappointed to discover, upon arrival at 7am having not eaten anything nor drunk anything since 6am, that I was on the afternoon list. I wonder why they can’t tell you this in advance.
I was allowed some water until midday when it was reported that the morning operations were going well and the list was being dealt with quicker than scheduled. I was put me into a gown. This cheered me up.
The most excruciating waiting happened in the place just outside the operating theatre – I think of it as a holding pen. They took me down at 4pm but it wasn’t until after 6pm that I was taken into the theatre. Not that I remember that. I love the heated blanket they give you down there – because the theatre is so cold – but after two hours I asked for it to be turned off and then I was there so long I started getting cold. I heard voices from the theatre from time to time and thought they must be finished but they weren’t. I consoled myself with the thought that it’s better to be the one waiting than the one being operated on for so long. Although I couldn’t help wondering what effect such a long operation has on my surgeon. Finally the anaesthetist came and injected me with something. Whatever it was caused me to sit straight up and I thought I was going to be sick. I remember being appalled and thinking after all this waiting I’m going to be sick and they won’t be able to operate. And that was my last thought for a very long time.
I woke up in the intensive care ward which I’m told is the usual process for patients following lung operations. Joe and Eleanor came in at some stage but I’m very fuzzy on the details. I felt there was a lot of noise, especially from an Italian woman talking to her husband. But I may have been dreaming all that. At some stage, I’m not sure when, I saw Dr A and he told me the operation had gone well. Nice and quick with everything going according to plan. Here I am next day back in my ward. Hopefully the last picture of me in hospital for the foreseeable future.
As I was predicting, with more confidence than I actually felt, I was discharged from hospital on Wednesday the 31st of July and after resting on the Thursday was able to get to the first full day of MIFF 2019 on Friday the 2nd of August. Though only for one film, Brittany Runs A Marathon, rather than the four that I’d originally intended. And so it was for the next couple of days and we were back in full swing by Monday the 5th of August. It was much less invasive surgery than removal of the appendix.
Our film-going was thereafter only interrupted by my follow up appointment with Dr A. Most importantly he told us that there was no trace of cancer in the lymph glands. He said this very matter of factly as he had always told us it was unlikely. But we had worked ourselves up a bit about the possibility. Good news – no chemotherapy. It reinforces how good it is that the cancer was picked up early. He took the single stitch out of one of the three holes under my arm and announced himself pleased with how everything had gone and with my recuperation. He gave me a copy of the pathologist report, the relevant section of which you can see here.
I didn’t ever look up the internet during this process. I couldn’t bear to. That might be another form of denial. I left it to Joe and Eleanor and from time to time I asked them about the specifics. What sort of cancer it was and other bits and pieces. I preferred getting that information verbally.
I’ve been asked by a couple of people whether I thought I was going to die. The answer is no. I took to heart what everyone has told me. Cancer is no longer a death sentence. Although most people react when you tell them that you’ve got lung cancer as though it is. I’m following Lynne’s example and telling people when I’m asked how I am that I’m fine but I’ve had lung cancer. I did that with everyone when I was first diagnosed, even slight acquaintances, but now I only tell people who I know well. Mostly the reaction is the same.
I’m also heartened by the fact that it was caught so early and could be cut out. Much better to have been found and removed than silently growing. I’m reminded of the experience of two people, one a good friend, who I spoke to at a dinner party. Both had been diagnosed with cancer – one prostate and one breast – and both described how strange it was to have no symptoms of ill-health only to be told you needed treatment that made you feel very sick indeed and then be told you were cured. Of something you didn’t know you had. I sort of feel the same – except without the treatment making me feel bad. I’m glad I missed that.
I’ve always thought I’d live until my nineties as I come from a line of long-lived women – good Irish peasant stock! That’s not the case now. I’m sort of comfortable with the idea it might recur and I’d need another operation which is not a fearful idea. Keyhole surgery is not as invasive as the other sort. I’m heartened by my surgeon’s throw away line. In any event I’m happy with the life that I lived which is what kept me going on that awful night of nausea. And heartened by the love of family and friends that has been so amply demonstrated over the last six months. I’m a very lucky person.
Now I’ve put it out of my head. I will be monitored now with a CAT scan every six months for the next couple of years depending on what they find in the first one which will be on the 18th of February 2020. Afterwards that might lengthen to twelve months. We have to balance the need to check what’s happening with the need not to give me too much radiation. As Dr A reiterated, when prompted by Joe at that last consultation, he and I will grow old together.