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.