Waiting for a train

 

In late July 2020, the midst of the pandemic, a routine hepatology review at the liver cancer clinic revealed that things were not routine at all. The drug I had been having for 12 months, lenvatinib, had stopped working - or perhaps had never really worked. A secondary liver cancer tumour located in my abdominal cavity had been ever so slowly getting bigger over the past 12 months. At each 3-monthly review there hadn't been a significant change in size, just an amount that could be interpreted as due to a slightly different slice through it in the CT scan image.  Up until then there had been a focus on the several tumours in my lungs. They hadn't really got much bigger. But the radiologist and the hepatologist together detected a longer term trend in the abdominal cavity tumour. 

So I stopped the drug, increased my levels of energy (which had seemed quite while good on the drug but improved noticeably), lost the side effects of pain in my pelvic area, lower back, feet and hands. Whooppee! 

"About a year", the specialist said. Not because he knows exactly. They never really know and they know that. They just realise that people want some kind of number and the number they give you is based on their years of experience. Six good months, he said. Get out and do fun things. Enjoy life.

So I did. My partner and I created some camping trips to the Western Australian outback and the far south east coast. We'd do more but it's getting warmer and our camping months will have to be paused for now - or for good?

My son, lives in Malaysia and immediately worked out a trip to Perth, where I live, in the past, a 5.5 hour flight away, back in the day when there was no quarantine and direct flights were available. Not this time. Permits were needed from both governments and a 23 hour layover in Singapore, making the journey very long indeed. Then two sets of  hotel quarantine, two weeks in Perth, and another two weeks in Malaysia, on his return. He's a truly committed and loving son. As soon as he landed here he set about booking some accommodation for a week's mother and son road trip to start as soon as he was out of quarantine here. Western Australians are travelling a lot in the state since the national borders are closed to their overseas trips. The school holidays started about the middle of that week, so accommodation choice was somewhat limited. 

But we stayed in some beautiful and interesting places and had a marvellous time. Provided I reminded myself that he's 43 and doesn't need unsolicited driving tips! I showed him some of my favourite spots, places we'd been to when he was young, or places he might bring his family to in the future. Kangaroos on the beach. Birds everywhere. Bush seclusion. That sort of thing.

It's now over 3 months since "about a year" started and I still have no cancer symptoms and still have energy to do things. Maybe my year will be longer that that. 

People often ask how I'm feeling and I tell them I feel good. But from time to time it feels like I'm on a station platform, waiting for a train. There's no timetable. Perhaps the train will be much delayed. Sometimes I forget all about the train and wander off and do other things, like buying a 2021 diary. but I do know that one day the train is coming for me.

Fighting or denying liver cancer -- or accepting liver cancer?

It's been almost four year since I first discovered I have liver cancer. I joined an online group for people living with liver cancer so I've got to "meet" quite a lot of people like me, living with long term liver cancer.

Several attitudes seem to emerge from the many different situations people are in. I want to stress that what follows has nothing at all to do with whether people continue to have and seek treatment for their cancer or what type of treatment that is. This is not about what you do, so much as about how you feel.

Here I am speaking about the longer term attitudes to living with liver cancer, not the understandable shock and disorientation we all feel when we find out we have cancer.  Some are even angry about their diagnosis - why me?  Why not you. For the most, this are relatively short term reactions. 

No, I want to discuss the longer term attitudes we develop and carry - invisibly to each of us, but not to others.

There are those who believe they must fight liver cancer, chase up several confirming diagnoses, every possible treatment, never give up, urge others to be positive that they will beat this disease. I call them warriors.

There are also those who accept that they have liver cancer. They are not necessarily passive or fatalistic about it. They believe that everyone dies of something and they are likely - some day - to die of it. Unless they die of something else instead. We don't get out of this world alive. Those who accept their diagnosis are informed about it - they are not afraid to search for information about their condition and treatments.  They don't shy away from investigating it or speaking about it. They will do what they can, what their health care team advise, to live as well as possible. Until such time as available treatments stop working. Then they'll seek palliative care to remain comfortable and in charge of their own lives as far as possible.

There are also those who seem to avoid all mention of it. They are unlikely to join support groups because they don't want to hear anything about it. They virtually deny that they have liver cancer. Their families have a pretty hard time.

I started wondering whether some of these longer term responses to liver cancer might relate to the well-known "fight or flight" response, a universal reaction to threat. The warrior stays and fights with all of their might this (internal) threat to survival.

The denier flees mentally from the scene. I don't have cancer. It's not going to kill me. Let's speak about something else. Look, is that a plane in the sky?

But how does the person who accepts their situation fit into this scheme? They may resent the language of war being used about their well-being. Acceptors often come from a sound information base. They don't shy away from finding out the survival statistics. They want to be ready when the time comes, but still hope it won't come for a while yet. They are not fighters nor are they fleeing. 

As you may have guessed I see myself as an informed acceptor. It seems a realistic way to deal with the facct of having liver cancer. I hope no one ever writes about me, "She lost her battle against liver cancer". I'm not fighting a battle. Some of the cells of my body might be, but I, a conscious sentient being, with a soul, I am not fighting. I am just trying to live a good life. In peace with my soul and my community of souls.

May we all find peace

Keeping on with Treatment

There are three factors which determine whether you can continue on a Government subsidised liver cancer drug in Australia. The specialist makes the call.

• Imaging:  do the CT scans show any new tumours or the growth in any existing tumours? If not, stable disease. Changes say the cancer is "progressing". A very inappropriate term from a health consumer point of view. 
• AFP blood test:  the alpha fetoprotein test measures tumour activity through the analysis of a blood sample. Read about it here. If it increases above "normal"  it suggests that tumour activity is increasing. The tumours may be too small to be detected in a CT scan. However a low, normal AFP level does not mean there is no tumour activity. False negatives are common, but false positives are not. My AFP level was normal in August 2016 when my hepatocellular carcinoma was first identified and just before the surgery to remove it. After successful surgery it stayed normal for over a year and began rising in early 2019 as a sign of a decline in the effectiveness of immunotherapy. Doctors measure AFP in nanograms per milliliter (ng/mL). The normal level for most healthy adults is between 0 and 8 ng/mL. Very high levels -- 500 to 1,000 ng/mL or more -- are often a sign of certain kinds of cancer, but on their own cannot diagnose it.
• Overall health, physical and mental: how are you tolerating the medication? are the side effects manageable? any other new health problems? 

My AFP has been rising steadily. It is by no means very high. Levels such as 20,000 have been seen in other people with liver cancer, my specialist tells me. I have even heard of someone having an AFP of one million ng/mL! 

My current AFP test is the highest it has ever been now, but it's still only 420.  The CT scans over the past 8 months show no changes in tumour size or number. So my reading is that the drug is beginning not to work, but not enough to stop taking it, since the scans show the cancer is not worsening and my overall health is quite tolerable.  The side effects at times are troubling - pain in all sorts of places, sore and flaking hands and feet. But not troubling enough to consider stopping the drug (Lenvima).

New Threat to Life

I haven't blogged here for almost six months. Not that I have not had many thoughts worth writing about.

The most significant thing to happen has affected everyone across the world:  COVID-19.

After recovering well from pneumonitis of last year I was going pretty well, apart from some lenvatinib side effects, mainly sore hands. The time was ripe to make a quick trip to Melbourne to replace the one cancelled in 2019 due to influenza. We left for Melbourne, over 3,400km to the east of home, on 11 March as the world was becoming aware of the outbreak of a new coronavirus beyond Wuhan China to many other countries. Four days into our stay in Melbourne we watched in shock as WHO announced the virus spread to so many other countries that they had declared a pandemic. We acted carefully in our stay in Melbourne, but still used public transport, cafes and restaurants, meeting up with old friends and relatives. We carried hand sanitiser and did lots of hand washing. In Melbourne CBD we saw many people wearing masks, mainly Asians. By the time of our flight back to Perth, the airport was very quiet, there were few travellers. We hoped we would be well spread out  in the plane. Alas, as the departure time approached, people began to arrive at the gate lounge and the plane was about 90% full. Like us, some passengers carefully sanitised their seat area, tray tables, seat belt, head rest etc. Others reached across the aisle to crack jokes with mates.  

A few days after our return the Australian Government closed Australia's borders and some states and territories, closed their borders to Australian travellers from other jurisdictions. People we being encouraged to stay at home as much as possible, adopt good hand and cough hygiene practices, socially distance at 1.5 m and public gatherings were banned. Only essential workers could go to work; others were encouraged to work from home, children to be home-schooled by parents trying to work from home as well.

People over 70 or over 65 with a chronic condition (tick) or a suppressed immune system (tick) were advised to stay at home and consider having groceries and medication home delivered, but to avoid regular and necessary health care appointments. Doctors' consultations were available by phone when your presence was not necessary in the clinic.

I approached those rare trips out with trepidation as it took a while to adapt to, and feel confident with, the new practices. Some of my cancer drug side effects began to worsen. My hands were sorer, and my feet began to hurt so much that there were days when I could not go on my permissible daily walk in the local neighbourhood. The anti-COVID hand washing took a toll on my sore flaking hands, no matter how much cream I rubbed into them.  I could no longer wear protective fabric gloves as they prevented appropriate hand hygiene.

My back began to ache continuously, waking me from sleep several time a night and making me feel quite miserable and exhausted. Although I tried not to think of the future, when I did, it looked very gloomy. I believed - and still believe - that a vaccine is unlikely as coronaviruses have proven an insurmountable challenge to virologists over past decades searching for a vaccine, to the common cold, for example. This new strain of coronavirus however, was far more deadly. Lots more lives at stake. Until then vulnerable groups, including me, dare not venture outdoors or interact freely, even if the social restrictions were relaxed for other groups. Much as I enjoy being at home, would I ever get out of here?

I felt trapped, not at home but in a metaphorical corner. The drug is kind of working, stable disease, the doctors say, but the AFP marker of tumour activity is continuing to rise. The side effects were bad and made life hard, but not so hard that I could decide to stop the drug. I was stuck.

I spent a week thinking that the precautions I was taking to stay safe, and the side effect management, were all so futile. I was going through all this to stay alive so that, a bit further down the track, I could die of liver cancer. What was the point?

Eventually I saw the light. I am staying home not only for my own protection, but for that of others. And I definitely did not want to die sedated and alone, in a COVID ICU. I wanted to survive until international travel bans were lifted and my son and family could visit Australia from Malaysia.

Challenges

July 2019
There's nothing like a terminal diagnosis to remind you that you have waaaaay too much stuff. And if you do not do something about it, some of the people you love and adore are going to be lumped with the enormous task of sorting it out.  I mentioned in the previous post that when death seems quite imminent, you can focus on the task of getting rid of stuff.  But when a new treatment pushes back your own personal "deadline", the urgency of the task wanes considerably. Currently I do not have any solution to that.



The changes in forecast lifespan have recurred throughout my time with cancer. Sometimes death seems like a speeding road train with its headlights on high beam, tail-gating you. At other times you are aware that the truck is somewhere behind you, but your focus is no longer in the rear view mirror, but on the road ahead.

When I started with hepatocellular carcinoma (HCC), successful surgery seemed like the end of my immediate thoughts of the threat of death. Then, when metastases were detected a year later, treatment options, survival and end of life care come to the fore. At that time there was only one drug treatment option. After I developed a toxic response to that drug I knew there was nothing else for me. But then, just before Christmas 2017, I was told that there was now one other possibility.  A new drug, still undergoing clinical trials. The challenge for my specialist was figuring out how to access this new immunotherapy drug, just beginning to be used for HCC. He was no doubt very busy over the Christmas holiday period, writing up applications to various bodies to obtain access. I was not eligible for the ongoing clinical trial as recruitment had just closed. But he made a case to the drug company for a compassionate access program.

That drug, nivolumab, was delivered by intravenous infusion. This meant I needed to be in my home town every two weeks for the foreseeable future. Never mind though. I developed no unmanageable side effects and we could learn to plan around the fortnightly trips to the IV Lounge. Life became normal again. Except for one afternoon a fortnight, I virtually forgot I had cancer. Things were sweet for about 15 months. Then a tumor marker on the blood and a CT scan suggested that my good buddy, nivolumab was no longer working for me. For several months it was not clear if I needed to divorce nivolumab and enter into a new marriage with the new kid on the block lenvatinib (Lenvima). This drug worried me. It was a brother drug to sorafenib (Nexavar) which I'd only been able to tolerate for 10 days because of a serious adverse reaction.

You start to analyse and discuss the research studies about your drugs: what trials have been undertaken, are the results available yet, what is the side effect profile, what is the effectiveness (Overall Response Rate, Time to Progression, Progression Free Survival).

You set up a Google Alert for hepatocellular carcinoma and the drug you are on, so you can keep up with the latest health care news.

You weigh up the pros and cons. What is the probability of the drug working vs the probability of intolerable side effects? Despite these analyses, you have no way of predicting your individual responses to the drug. Which group will you fall into - the group which did gain a benefit from the drug or the group that didn't? The group which experienced bad side effects, or the group that didn't?

I was lucky to be offered lenvatinib which had been placed on the Australian Phamaceutical Benefits Schedules only days before. Instead of paying AUD9,600 a month for daily capsules, the Australian Government subsidy meant I would pay just AUD6.50.

So life with cancer is a series of new decision points, decisions that must be made with imperfect information. It is a special kind of emotional roller coaster, with some smooth bits in the middle.

My partner and I approached each consultation with the specialist with a list of questions and discussion points we'd prepared. We realised beforehand that there would probably be no clear answer to some of the questions, but we still had to ask.

We took copious notes and discussed them afterwards. Invariably one of us would have picked up points the other had missed. There's such a benefit from having two pairs of ears.

In the end you just have to decide what seems right at the time.

Whether you see an oncologist or a hepatologist depends on who you can develop a good rapport with, more than anything. I used to think that oncologists want to push you towards the most aggressive treatment regimes and would not support your decision to stop pointless treatment. But perhaps not all are like that. I would like to see the cancer under control of course, but not at any cost. The quality of my life is far more important than the quantity.

I was also very fortunate that the public hospital HCC clinic I attended provided access to a specialist nurse by phone and email. If a new side effect appeared, the nurse was interested and responsive, suggesting ways of managing it and arranging a prescription, if needed. She checked on me weekly and also helped coordinate between the hepatologist and my general practitioner (primary care physician) and any other specialists involved in my care. Best of all she encouraged me to get out there and enjoy a normal life.

This nurse liaison service is quite wonderful. It's a service not so evident for all those attending a private clinic, despite the large difference in out of pocket costs. Cancer care seems to be more disjointed in the private sector than the public sector, based on my own experience and that of friends and acquaintances. Things happen to patients between consultations. People living with cancer need a way of being supported in a more continuous manner by people who understand and are trained in this field.

Post script written four months after the above (Nov 2019)

In late June I'd decided to have a go with the new kid on the block, lenvatinib and this was going well. The tumor marker was coming down, no new tumors, perhaps slight decrease in size of some of the existing ones. I felt well.

Then I didn't feel well. Backache, chronic cough, weight loss, fatigue and breathlessness, increasing throughout August 2019. Then a CT scan revealed "ground glass" - white opaque areas in my lungs. Either I had pneumonia or pneumonitis, an immune related inflammation of the lungs. Another hospital stay, this time for 3 weeks. Firstly they had to determine which was the cause, pneumonia or pneumonitis. The treatment for pneumonitis, steroids, could have a disastrous effect if it were an infection. I spent 10 days getting pumped with antibiotics and tested for every kind of lung infection, all the while getting sicker and sicker, in respiratory failure on 15 litres of oxygen a minute, bed bound. Finally a specialist decided it was time to start steroids!

And I slowly began to improve, get my appetite back, sit out of bed, take a few tentative steps. I had pneumonitis, believed caused by a delayed reaction to the previous drug, the immunotherapy drug nivolumab, which can over-activate the immune system so that it attacks your healthy body.

Seven weeks later, after lots of support from family, friends, health professionals, a regular home rehab program of exercises and walking, I no longer need the oxygen around the house, just when exercising and walking longer distances. I am getting better.

I'd had to stop the cancer drug lenvatinib when I was in hospital as I was so ill. Have now resumed it and am back on track.

How it hits you

Like most people who are, I never expected to be diagnosed with cancer. But I did and it was both a surprise and, strangely,  a relief.

At 48 my lungs were badly damaged by severe pneumonia, I spent a month in intensive care and returned to work after 4 months sick leave. I learned to manage my chronic lung disease, joined a support group and eventually came to lead it. I thought that having acquired this lung condition, I would not get cancer. In psychology this is called magical thinking - superstitious thinking. And it did not protect me. But it certainly ended up preparing me well for living with a terminal illness.

I did not have any of the major risk factors for cancer. I'd never smoked, barely drunk much alcohol, wasn't obese (a bit overweight, if I'm honest). Thanks to pulmonary rehabilitation after my pneumonia, I exercised regularly, within the limits of my lung condition. I'd had no occupational exposure to known carcinogenic agents, apart from parents who smoked. I had no close relatives who had had a cancer diagnosis. I'm a keen family history researcher, so I know the cause of death of many of my relatives.

Liver cancer usually has no symptoms until quite late in the piece, so I was lucky that mine did  - or the tumour might have grown much larger and been too large for successful surgery. What I did have was severe pain on my right side, just under my rib cage. It began one evening just after dinner, a month after we returned from a fantastic 6-week camping trip into the north of Australia - including the Kimberley, the Top End, and Kakadu National Park. We phoned up the home visiting locum GP who examined me and suggested we go to the local public hospital emergency department. It could be appendicitis, he thought, or a gall bladder attack. Not urgent. The hospital could do some tests to pinpoint the cause.

As I was getting ready to go to the hospital the world became yellow and dizzy, and I blacked out. I came to on the floor.   My partner Tom had managed to break my fall. He'd called an ambulance as he now couldn't risk taking me by car. The ambulance took me to hospital, no flashing lights or sirens. Arriving by ambulance on a Friday night I was seen remarkably quickly in the ED. A CT scan revealed a growth of some sort on an outer lobe of my liver. It looked to be about 25mm across. It had been contained within a capsule which burst, along with an adjacent blood vessel, causing internal bleeding, hence my blackout and the pain.

The doctors arranged for a hospital bed and surgery as soon as possible. I was made comfortable with pain killers until surgery could take place - about 36 hours later.  My son lived in Malaysia and managed to arrange a flight to Perth, arriving not long before my surgery.  After the surgery I was told it might be a couple of weeks until the pathology results became available.

It turned out to be 5 weeks. By this time I thought the tumour was surely benign, otherwise I would have been called in for the results much sooner.  The section cut from my liver (segment VI) turned out to be 120 x 120 x 50 mm, the tumour being a nodule about 50mm in diameter.  Apparently you can lose about 75% of your liver and it will regenerate. I'd lost only about 5%. Cruisey.

I was surprised to discover that this growth was in fact malignant, a hepatocellular carcinoma (HCC) or  hepatoma, the most common type of liver cancer. I recovered well from the surgery and was told the surgeons were confident that the whole of the tumour had been resected. Because a blood vessel had ruptured with the tumour capsule, there was a chance that the cancer could have spread elsewhere in the body. So I would be monitored quarterly by blood test and CT scan.

Every 3 months I attended the HCC clinic and saw so many very ill and frail people in the waiting area. I felt like a fraud, taking up valuable hospital resources. At each consultation I learned more about HCC and my particular situation. My partner attended each of these specialist visits for a year, providing another set of ears, helping take notes and ask relevant questions. Since all was going so well, I told him it was OK, I could go on my own to the next one. So 14 months after the tumour had burst, after the "all clear" on CT scans and blood tests, I received the surprising news that metastases (secondaries) had been picked up on the latest CT scan - in my lungs and in the abdominal cavity, the peritoneum. Too many tumours in the lungs for surgery.

In Australia there was just one drug approved for liver cancer, Nexavar (sorafenib). I started on that but had to stop after just 10 days because of a  severe adverse reaction. Without any other treatment options the specialist suggested I do some of the things I've always wanted to do - at least in the next six months, when my quality of life should be OK. He said he didn't really know how long I might have, but that given my situation, my overall health and other conditions, he thought maybe I had about a year.

I started "getting my affairs in order". Spoke to a palliative care nurse, an independent funeral director, an eco-coffin retailer, the operators of the natural burial ground where I'd like to be buried, a venue for a memorial event and another for a wake. I discussed the 50 questions on the Your Life Wishes cards with my partner and my son, and documented my wishes, revised my will, filled out a personal affairs record book and reviewed my appointment of enduring  guardians and attorney.

Shocked
What was I feeling?  Well, to be honest, very shocked at first, when told about the metastases. I think I babbled on to the specialist (who broke the news to me in a very sensitive way). I told him I'd hoped to be one of his "happy ending stories". He'd already told me how few people survive liver cancer. He knew I could google that stuff for myself.

Overwhelmed
Then, once I realised how much I had to do to get my affairs properly organised, I felt rather overwhelmed by the size of the job. I wanted to make things easier for my son and my partner after I've gone. I wanted to give away books, clear out things - either dispose of stuff I really don't need and give some items to special people in my life.

Twenty months later I'm still here - thanks to some excellent health care and the availability of some new drugs. Due to my continuing good quality of life, I've only just made a start on the mammoth task I set myself. Honestly, I've barely touched the surface, because my death has receded into the medium distance again. These tasks do not seem to have the urgency they had in late 2017. I can look towards the medium future, plant seedlings, plan some trips again, forget about that last final one.

Relief
I also felt relieved. I realised my finances were going to be OK. If my life is to be reduced in length my superannuation fund will surely not run out, something I had feared for years.  And I will probably never develop dementia, a state I would hate to impose on those around me. I won't lose so much more hearing that I am cut off from friends, family, music and birdsong.

I have a pretty good idea what I'm likely to die of, and some idea of what that is going to be like.  Though of course you can never really know.  This helps many people live their lives with that uncertainty taken care of. I cannot say that topic has ever kept me awake at night, but it's still a kind of relief.

Sadness
I feel sad too. Sad that I will probably not live to see my grandchildren grow up. Sad to leave the people I love, my partner and my son particularly.  My son has already had some traumatic events in his life and I feel bad about inevitably adding another. Is that too vain to imagine?

Elephants and other things

There's a bit in the way we talk about cancer that annoys me.  Here are some of my pet peeves.

For a start I don't like the term "cancer journey"(trite) and I hope no one EVER says about me "she lost her fight against cancer on..."

When you go on a journey you usually end up somewhere nice. Cancer is not a journey. 

... the words of another person with cancer (whose name I have unfortunately forgotten)

It's true that everyone's experiences with cancer, cancer treatments and supports vary widely. So it's not a package tour, that's for sure. It's also true that the destination is the same for many. Dying. Not for all.  But for very many with liver cancer.

Survival rates vary. The medical profession talks about 5-year survival rates when comparing different treatments. The 5-year survival rate for liver cancer (hepatocellular carcinoma, HCC) in Australia was 18% in 2015-16 when I was diagnosed. So that means less than 1 in 5 will still be alive in 5 years.

Survival rate is improving though, thanks to more research and new treatments. But the diagnosis rate is increasing too.

HCC is the 15th most commonly diagnosed cancer. More common in men than women, more of a risk for with people with chronic hepatitis, liver scarring (cirrhosis).  I'm not male and have neither of these, nor indeed any other risk factors. Random mutation the specialist told us.

There are not many treatment options. Some people will be eligible for surgery or ablation. I had surgery initially and that successfully removed the tumour in my liver. Unfortunately secondary tumours developed in other parts of my body, mainly my lungs. Too many for surgery.

Drug wise there are two approved medicines in Australia aimed at treating cancer (May 2019).  Both approved drugs are targeted therapies that interfere with cancer cell metabolism. They cannot "cure" the cancer, merely try to stop it in its tracks, preventing further tumour growth. The second, lenvatinib (Lenvima), has about a 50-50 chance of effectiveness. But it can easily give you some nasty side effects too.

The immunotherapy treatment I've been lucky to access is not yet approved for liver cancer in Australia. I have been fortunate to access to it through the drug company's compassionate access program. Thank you, Bristol-Myers Squibb. I was also supported by Sir Charles Gairdner Hospital in Perth, Western Australia. Thank you, IV Lounge.

Back to my pet peeves.  The medical professional has a very odd way of referring to the growth of cancer tumours: progression! Really? One of the measures of the effectiveness of a new cancer drug is "Progression Free Survival" - how many months did you live on this drug before the cancer got worse?  When the cancer gets worse it is hardly progress. Sure it is progressing towards death, but not the most thoughtful expression from the patient's perspective.

I also don't like the term "cancer sufferer". Does that ever drop you in the victim box and leave you there.  I'm  not asking Why me?  I'm more of a Why not me? person.  Get in there, find out all you can and figure out what you can do, and what you cannot.

My hepatocellular carcinoma (HCC) diagnosis came in 2016. So here I am in 2019, three years later.  Living the life.  With secondaries in my lungs. Will I be here in 2021? Will my number be up when the five year period is up? Who knows. Maybe not. When I die - and I surely will - I've left instructions about how to let friends and family know: in the paper, by email, phone and on social media.  My partner Tom and my son Khalil  would not dare to say "she lost her battle against cancer".  I'll be back to haunt them if they do.

People, it's not a battle (or a journey). I'm not fighting anyone or anything. I'm living my life as best I can, just like you. The language or war and conflict has no place in a discussion of life and health.

And finally.

Yeah, the elephant. As a society we need to get better at talking to people with cancer. I know, I've been as guilty as the next person. Quite some years back I visited a relative at home. She was nearing the end of her life and had cancer. (I had yet to join that particular club.)  I am ashamed to say that I spent a fair bit of the visit talking to her daughter about anything but cancer or her mother's health. Heaven's above, the sick relative was not deaf or mute.

Why didn't I talk to her about how she was going? Maybe I did not know how to. Felt embarrassed. Had never faced this situation before, fearful of saying the wrong thing. So avoided the elephant in the room.

This experience flipped back on me in the early days of my first unsuccessful treatment of the metastases. I had terrible side effects to Nexavar (sorafenib). Particularly hand and foot skin reaction, which sounds like a bit of a rash, but is much worse. Your fingers and toes become red, swollen and extremely painful, all the time. To touch ANYTHING is excruciating. I used white cotton gloves all the time on my hands to protect them a bit. But I could barely take down my pants to use the toilet, brush my teeth, cut my food, use my inhalers. I went from OK to invalid in a few days. These pictures are not my feet but mine looked similar.

It's a sign of toxicity, so after 10 days on this drug I had to stop and face my "final run".  During the 10 days of sorafenib, at the height of the pain and disability, we went out to dinner with some good friends. Perhaps this would take my mind off the pain.  At home my partner and I spoke much about cancer drugs, death, funerals, side effects, palliative care, survival statistics etc. We could barely think about anything other than cancer.

At dinner our good friends could not face the elephant in the room. Our friends, who had faced cancer themselves, could not mention it for more than a minute, it seemed. Even when my partner had to cut up my meal in front of them and I had to wrap a cloth around the cutlery to further protect my hands from the pressure.

Is it that cancer reminds us all about the temporary nature of life, that we all face death (though some more imminently)? Are people are frightened that if they raise the topic they are going to be bombarded with nothing but hospital and medical topics?

I'm not sure how we do it but we've got to get better at talking about cancer, because a hell of a lot of people are going to get it. But we should avoid those hackneyed terms about journeys and fights.

The Death Cafe movement  encourages people to feel more comfortable talking about death and dying by hosting safe conversations in public places like cafes and bars. I have attended the Perth Death Cafe on several occasions and found it to be a marvellous way to explore ideas. Not everyone attending has received a bad prognosis. Some are still getting over the death of a close family member or friend. Some are just wanting to get their life ready for the inevitable phase, when it comes.