Neale Daniher: Fighting to fund the cure

Neale Daniher

Canterbury, Victoria

 

Living with MND

Neale Daniher, AFL great now fighting Motor Neurone Disease (MND), is ready to open up further about the disease and disability. MND is a swift and merciless disease, and Neale is matter of fact about what has changed for him physically in that time.

‘I’m fortunate, my progression is quite slow. There hasn’t been a great deal of physical change over the last six months. I am weaker in my upper body and arms, but even though it is obvious to me it is not easily detectable to those who see me often. I’m lucky, my legs are still good’.

MND is not just one disease – it is a group of diseases that effect the motor neurones that control muscle movement. Some are more progressive than others, and symptoms, progression and survival time vary. Neale acknowledges this, and yet remains positive. He has the type of MND called progressive lower motor neurone disorder, which in his case is moving relatively slowly.

This joke has weight: as we speak in his living room, Neale’s wife Jan is raking the lawn in their backyard.‘They tell me progression tends to be relatively consistent, and mine is slow. And it is now possible to live beyond the average life expectancy, which is between two and five years. The upside is, with MND I get a free pass on nearly all of the family chores’.

Despite the joke, MND hasn’t slowed Neale down.

 

Fighting ‘the Beast’ MND

‘I personalise the disease, I call it the Beast’.

In early 2015 Neale became the Patron and Vice-President of the Cure for MND Foundation. He joined Chairman Dr Ian Davis, who also lives with MND, as well as Patrick Cunningham (whose wife Angela has MND) and Angus Twopenny.

They didn’t start, small, successfully pulling off the largest fundraiser for MND ever in Australia. The Big Freeze – where sporting greats and commentators plunged into a container of iced freezing water in front of the MCG crowd and live on TV – was to raise $250,000. They smashed this target, raising $2,411,800 since June.

By bringing in the AFL community and packing out the MCG, Cure MND has done what no one else could: they made ‘the Beast’ relevant. Neale gave it a face, a name, and got thousands of people doing something about it. This is no small feat. MND is not an easy disease to talk about: it is not easy to explain, it does not lend itself to a pink ribbon or yellow daffodil, and it kills all it touches.

And there is also Neale’s work with Brewmanity, a not-for-profit that donates 10 per cent of its profit from hand-crafted beers to the Cure for MND Foundation.Neale hasn’t stopped with the AFL community. In October he toured Victoria for Daniher’s Drive – a four day fundraising extravaganza that took him – as well as 200 people in 60 cars – along the Great Ocean Road to Warrnambool, through the Grampians, and on to Bendigo, the Murray River and Albury.

On Saturday 28 November the Cure for MND Foundation held its inaugural Gala Dinner, headlined by Kate Ceberano with an estimated $150,000 raised.

The goal is clear: more money for more MND research.

That is because one in 180 deaths (yes, you read that right: one in 180 deaths) in Australia are due to MND. That means you are likely to know someone who is diagnosed with and will likely die from MND.

 

Making the funding pie bigger for all

Neale and Cure for MND are all about making the funding pie bigger. Cure for MND has raised over $4 million this year (including what was raised through the Big Freeze). Given the voluntary basis of the organisation, the majority of funds raised go towards making the pie bigger – they are invested in researching the cure and caring for those already living with MND.

Neale is thankful the Commonwealth is increasing the total funding available through the National Health and Medical Research Council (NHMRC). He is the first to acknowledge there are plenty of diseases and conditions requiring urgent medical research. But he is adamant it is not enough.

In late November the Federal Government announced it is increasing funding for MND research in 2016 to $2.5 million, up from $2.3 million in 2015. But while this is an increase in dollar terms, it represents a smaller slice relative to the overall size of the pie. This is because in 2015, MND research received $2.3 million of the $420 million invested in medical research (around 0.5 per cent). In 2016, it will receive $2.5 million of the $760 million invested (around 0.3 per cent).

‘We now get less than half of one per cent of the funding distributed. If we are to beat the Beast, we need more than that. And that is why we created the Freeze Army. In just one year, we have almost doubled what is available to fight the Beast’.

In late November, Cure for MND donated $1.75 million to MND Australia. Combined with the $3.32 million contributed by MND Research Institute of Australia, this brings the total available for MND research to $5.07 million – greater than it has ever been.

On top of the $1.75 million for research, Cure MND is making available $1 million to Neuroscience Australia and similar Australian organisations to assist Australian trials of therapeutic drugs. The goal is to find a treatment that may slow down the Beast. This is a way to bring real hope to those living with MND, as any research success story will take years to reach the market.

Neale argues that more funding is needed to care and support those living with MND now. And by investing in therapeutic trials (most of which occur overseas with few in Australia), Cure MND is funding Australia’s best and brightest researchers and clinicians. However, funding trials is an expensive endeavour. More funding is needed to beat the Beast.

 

MND in Australia

  • Approximately 400,000 people live with MND around the world, with around 1,900 in Australia.
  • MND may be diagnosed at any age, although it most often effects people between 50 and 60 years of age, with more men diagnosed than women.
  • Each day in Australia an average of two people are diagnosed with MND and two people die from the disease.
  • The average life expectancy of someone with MND from diagnosis is between two and five years.
  • It cost an estimated $300,000 to care for someone with MND per year.
  • MND is also known as Amyotrophic Lateral Sclerosis (ALS, known best in relation to the Ice Bucket Challenge).

CURE FOR MND FOUNDATION

The Cure for MND Foundation is a 100 per cent not-for-profit foundation. The goal of the Foundation is to live in world free from MND. The aims are to:

  • To cure: By funding the best and brightest research within Australia to identify potential treatments.
  • To care: By providing vital equipment and services to those living with MND in order that they may maintain independence, dignity, and an improved quality of life.
  • To make aware: By increasing the public profile of the disease to encourage the Australian community, as well as the government and pharmaceutical companies to join the fight against MND.
Playing the numbers game

MND has a numbers problem.

Each day in Australia, an average of two people are diagnosed with MND. The catch is, an average of two people die from the disease each day.

The total number of those living with the disease isn’t going up, and this presents a challenge. How to make a convincing case to increase government funding?

Cure for MND has reached new heights attracting voluntary funding and donations, but securing greater government funding requires a different set of numbers: plenty of supportive voters or a killer business case, and preferably both.

I ask Neale how he feels about other successful campaigns to reduce and avoid deaths. For example, the Victorian Towards Zero campaign to reduce deaths on our roads from 249 in 2014 to zero, and national efforts to tackle lifestyle diseases such as Type 2 Diabetes.

Neale’s response is a reminder that he knows the public and remains a gentleman. ‘I don’t go down the road of comparisons. I’m not the only one suffering, and I don’t think people should only focus on my disease. That is why we are trying to build a larger pie – not take more from a smaller pie’.

But Neale does express his frustration.

He admits to being frustrated by the amount of waste in the health system, that appears to be built into the health system. He refers to the recent 4-Corners episode that investigated the way doctors feel pressured to over-diagnosis, saying ‘we waste billions through mismanagement and over-diagnosis, and then only give $2.5 million – only 0.3 per cent of available funding – to MND’.

And he admits being frustrated that preventable lifestyle diseases attract so much more research funding (though people can take measures to prevent them) than diseases that have no known cause, like MND. People don’t bring MND upon themselves, and when it strikes – and it can and does strike anyone – there are few measures they can take.

Neale’s point is that MND is here, it strikes one in every 180 people, and it kills. More funds are needed.

 

Thinking about the end

The majority of MND cases are sporadic, with no known cause. This means there is no identifiable reason why Neale’s body is failing him. The only thing Neale and his family can be sure of is that his body will fail.

‘I have sporadic MND – not the genetic kind. That gets my parents off the hook. And while I grew up on the farm, I left when I was still young and the doctors think it is doubtful my MND has anything to do with exposure to pesticides or toxins on the land. Until the doctors or researchers find out what causes MND, I’m not interested in speculating how I got it’.

‘I’m not at the stage where my wife has to cut up my food yet, although I’ll be fine with that when that day comes. But things are changing. It takes me longer to do things, and some things are becoming more difficult. I get others to tie up my shoes. And because my hands don’t work well anymore, I worry about some times and places. What if I were in a public toilet and couldn’t unlock the door?’

There can be little comfort in the fact that he has the slow-moving form of MND, for ‘slow-moving’ is a relative term. Stephen Hawking’s slow-moving ALS remains the outlier: most diagnosed with any form of the disease die between two and five years from diagnosis.

Neale takes Rilutek. It is the only drug currently available to have any impact on the course of MND. It may slow disease progression, and may prolong the average life of someone with MND by two to three months. But it does not come close to changing the end result. Neale’s life will end before his time. Neale is hopeful that the therapeutic trials that Cure MND are looking to support in 2016 may provide some new options for the treatment of MND.

I ask Neale his thoughts on Andrew Denton’s recent public commentary and current podcast series ‘Better off Dead’, where he explores the way we approach end-of-life care, assisted suicide and dying in Australia.

‘I saw Andrew Denton on Q&A. It was a good discussion. I’m not committed either way. I find that with these types of issues, the more they are brought out into the open and all arguments are presented, the better off society is’.

I ask about the practical realities that come with a diagnosis of MND. Wills. The different types of Power of Attorney. Decisions on end-of-life care. Neale looks less than impressed with these questions.

‘People think about death differently, and it is normal and natural to feel sad or sorry. But I think I am more emotionally fit if I focus on the short term. People who focus only on future outcomes miss the many opportunities for joy each day presents. I prefer to splash people today with hope and happiness. It is the way I go about things’.

Still, Neale answers my question forthrightly.

‘I have always had a will. As for the rest of it, I haven’t talked about my end-of-life care yet. It is yet to be done, and it will be, when the time is right. I’m comfortable with that. I don’t think there is any reason to talk about it prematurely. I’m not avoiding it, that time will come and I will confront it. But I don’t want it eating into my time now’.

 

Inspiring the rest of us

‘Our goal is to put the Cure for MND Foundation out of business. The Beast will keep laughing at us until we get more money. Beating the Beast is my motivation. I will fight it until I’m gone, and so the fight will continue without me’.

Neale is no stranger to the public spotlight. But this is the first time he has been interviewed by someone with yet another neurological disease that has no known cause and no current cure. There are many of us out there.

And to us, Neale is an example: not just of sporting prowess or how to fight a bastard of a disease, but on how to keep on living.

Living with MND on the other side of the world

 

Frank Lyons

Rozelle, New South Wales

Frank is almost 63. He was diagnosed with Motor Neuron Disease (MND, or known outside of Australia as ALS) a year ago. Born in Scotland, he has been married to his childhood sweetheart Rae for 41 years. Frank can no longer speak well, and he emailed me his background before we met at his house. He now uses an iPad and app to communicate, facilitated by his wife.

 

Moving to Australia

Frank: I was born in Scotland in 1952, the eldest of five children. My sister moved to Australia in 1981, and my daughter in 2006. I have other Australian relatives from my great grandmother, who emigrated to Australia in 1925. And so I always wanted to come to Australia.

In 2007, Rae and I were sponsored to work in Australia. While we did not expect to stay permanently, we have been very happy living here. My daughter Ruth lives close by. But Scotland will always be home. My son still lives there, and we returned last year for his wedding. But now, with MND, we are planning a final trip there in March 2016.

 

Being diagnosed with MND

Frank: Not a lot of people know about MND in Australia. It is a little better understood in Scotland, where prominent football players have been diagnosed with the disease.

My symptoms appeared in late 2013, when I first experienced a slurring of my speech and had difficulty swallowing. Soon afterwards a neurologist told me that I had had a minor stroke. I saw a speech therapist, but after several months there was no improvement and I started to lose weight. I then saw a new doctor, and he referred me to the Brain and Mind Institute at the University of Sydney. 

Frank and I are sitting on the couch, and Rae sits on a free floating chair. Frank is propped up in the corner of the couch, his iPad on his lap. He is positioned to look at both Rae and I, but he can choose to gaze at the spectacular view of Parramatta River. He does so as Rae starts to speak.

Rae: I knew Frank was ill. We went to see the Archibald Prize in August 2014, and I could see by his stance – his posture looked curved – there was something wrong. I thought it might be Parkinson’s disease or Multiple Sclerosis… I never thought it could be MND. It was a shock.

Frank: We do not know what causes MND, but I think stress played a role. The final six months of 2013 were overwhelming. I found out my brother had cancer, and Rae and I returned to the United Kingdom in October 2013 to support him – a year before I was diagnosed and around the time I started showing symptoms. Also in the same month I found out that I would be retrenched before Christmas. My brother then passed away in December. I was, however, then lucky to start with my current and very supportive employer, in April 2014.

When told the diagnosis in September 2014, we were about to return to Scotland for my son’s wedding. My doctor later admitted that he nearly didn’t tell me the diagnosis before we left. But confirming the diagnosis gave me the chance to tell my children. It was such a struggle to have to tell them. We did not tell anyone else until after the wedding, but many friends could see that there was something wrong.

After the diagnosis, the only thing I could think of was that 90 per cent of people with MND last between two and five years. I felt like giving up. I told my wife that ‘we are going home’. I suppose I took the same view as my brother had when it became clear that his chemotherapy was not working: he stopped treatment to spend his final time with his family.

 

Adapting to life with MND

I have had consistent and helpful support in the year since my diagnosis. The family is no stranger to neurological disease and movement disorders – my daughter-in-law Hannah has Fibromyalgia, my ex brother-in-law has Multiple Sclerosis, and I have two cousins and an aunt with Cerebral Palsy. And I was given clear support and advice on how to live with MND at the Brain and Mind Institute.

But I struggled to listen. I was in shock; maybe I still am. My wife and I have never experienced any major illness, and there is nothing I can do to get back to how I was. I am challenged by the necessity of adapting to a new lifestyle and taking new medications. Sometimes I agree to try a new drug or a new way, but then I give up. The deterioration of my speech, combined with my difficulty swallowing, lack of appetite and large weight loss, at times make me question why am I doing this. Nothing will actually make me better.

Frank is emotional, and this makes it more difficult for me to understand. Much of this interview is in Frank’s own words, but words emailed to me before I met him. I have used these words to fill in the story he told me in person.

At this point, I decide to ask their thoughts on the Australian healthcare system, which they are now intimately acquainted with.

Frank: I see my neurologist every three months, and I have a clinical nurse Margie on call if we need her. She is always available, and has great knowledge and empathy. I have never been admitted to hospital, I have always been a day patient.

Rae: It has been hard navigating a new system – it is not what we are used to, and we have no background knowledge. We have found the Australian system to be confusing, especially the difference between public and private. We have private healthcare, but we often feel that we pay more for no extra care or service. We have learned to call and ask for help. Looking back, I think we left it too long before we asked for help, that was the result of our confusion understanding who to talk to and what the process was.

Now we receive support from palliative care, community care and occupational therapist, with speech therapist, dietician, respiratory care through the MND clinic. At first, we always had different people coming to our home to help, and there was no consistency. Now we have a permanent person, who comes once a month, and it is better.

Frank: I have technology to help me speak, which is good, but it is not the same as talking. This just depresses me at times. I take many medications, including Rilutek, which is the main medication for MND (and in Australia is available through the Pharmaceutical Benefits Scheme). I also take medication to manage my saliva management, hypertension and blood flow.

I have a PEG tube (I later looked this up. PEG stands for Percutaneous endoscopic gastrostomy, and refers to a feeding tube in the abdomen, used when oral feeding is no longer an option) as I can no longer swallow. I had lost a great deal of weight, and cannot eat much more than soft eggs, soup and liquefied food. The new protein I use in my PEG has enabled me to put some weight back on.

I have a B Pap machine to assist my breathing at night and an electric pillow lifter, as I can no longer lie down. Rae and I no longer sleep in the same bed together... there is simply not enough space for Rae to sleep comfortably.

Rae: I think Frank could eat a little more than he does, but he chooses not to. It is psychological. He chooses not to use the thickener that is added to water to help him swallow. I know he stays hydrated through the PEG tube… but I miss the company at the dinner table. Being able to try new food and cooking together was a real pleasure. It is another part of our life that we have lost.

Frank: MND is more variable than I thought possible, and no one else experiences it in the same way. For me, it is hard to eat. I don’t want to. It is depressing.

The first time I couldn’t swallow it was very scary. It happened in the middle of the night, and I could barely breathe. I don’t like going to restaurants any more either. I can’t eat the food – I’ve had to spit it out in the past – and I have no appetite. And I can no longer enjoy a Guinness or a gin and tonic.

Not being able to speak is exhausting. I can use the iPad, but it is not the same. MND NSW has free communications apps to help people communicate. The artificial voice sounds robotic, but if you upgrade and pay you can choose the accent that speaks, although there is not a Scottish one! But it helps me at work, and in this interview. I can pre-program questions and comments.

Rae: I miss Frank’s voice. We could have recorded Frank’s voice and programmed that into the app, but now we can’t. When he still had his voice we didn’t know what we would need.

We have engaged with MND NSW. We attended an information evening, but at that stage we both felt we were not ready to face up to things.

We are usually always together when we leave the house. We no longer walk, we drive everywhere, and we have a disability parking permit. Frank has to wear a collar to keep his neck up, but that creates its own problems, as it restricts his breathing and swallowing so he sees no reason to go out. It is a catch-22. We found a collar with a new, experimental design from a university in the United Kingdom, but it has not been able to get enough funding to be made yet.

Frank: It affects the family as well. My daughter, Ruth, is very strong, very independent. She doesn’t say much about MND, or the future. She talks about how to manage on a day to day basis, but none of us talk about the future. She has other stresses in her life as well. Her partner’s mother has cancer, and he is living overseas to care for his mother at the moment. Ruth has a lot to deal with.

Rae: Frank was feeling very low earlier this year. Depressed, and maybe angry. He has never been the type of man to show his anger or argue back before… although now he can’t physically argue back anyway. Francis and our daughter-in-law Hannah flew in from Scotland to surprise Frank in July. It was beautiful.

 

Planning for the future

Frank: People expect me to be in a wheelchair, but I still work part time. My employer has been fantastic in many ways. They pay for a return cab each day so I can make it to the office. When I was first diagnosed I emailed everyone in the office. One colleague told me that she had a relative with MND. In hindsight, working for this employer has been a good outcome.

But even though I have this support, I will be retiring given my condition.

People have a negative perception of MND. I am normally a positive person: you can’t just sit in the dark the entire time. But there are dark days. I get frustrated. I think that is selfish. But living with MND is hard. I have no motivation to do anything, and although I know that is so hard on Rae, I struggle to change. They say only one per cent of people with MND live for ten years.

My life is at an end, but it has been a good one.

I ask if their roles have changed since MND entered their lives. Rae laughs.

Rae: As far as home goes, I do everything. I know Frank keeps most of his energy for work, but I get very frustrated when he does not even make a cup of tea. Frank could make an effort to do more, and people tell him to try and plan, but Frank does not recognise the need, he thinks ‘why bother’.

I do tend to nag him but call it ‘tough love’. I try to motivate him. But he has said many times ‘I just don’t want to be here’. Before he got the PEG fitted he wasn’t eating and we had a constant battle of wills. I once asked him if he was deliberately not eating as I knew he just wanted to fade away. His reply was an emphatic ‘no!’.

People have dropped away. All of a sudden, they don’t call anymore. Frank can’t talk anymore. And there are other ways, like email and text message. I am a member of a women’s fitness club and I am very fortunate to have made friends, which is a great outlet and they are all very supportive. This helps me immensely.

This is clearly distressing for both Rae and Frank. This brings them both close to tears, and I admit, myself as well.

Frank: Rae and I, we had planned to retire and travel. But I just want to go home now, to Scotland. Rae wants to stay in Australia.

Frank stops at this point. Perhaps he has nothing to say, or perhaps there is nothing to say for a man whose body – but not mind – is failing him.

Rae: We don’t talk about the future. There is no cure, so we focus on managing each day. But we have to look at the dark side. We need to talk about a carer’s plan, our future lifestyle, and Frank’s wishes.

I was offered carer’s support, but I am not ready. Perhaps in the future I will be.

Frank: I do not want to think about what will happen when I get worse. Even going home to Scotland is a challenge, I have to consider whether I should give up the lifestyle I have in Australia, even though it is expensive. 

My attitude puts stress on my wife and daughter, I always put myself first. While I have had to change my lifestyle to assist me, and I have the support to continue to do that, it is still a challenge. I have a terminal illness for which there is, at this stage, no cure. I have to deal with it, but I am trying to do it my own way.

The continuing decline is the biggest challenge. Rae and I adapt, but sometimes I struggle. Physically, I know I am what I am, but emotionally, I just want to go back to the way I was.

I want to go back to who I was.

Frank and Rae hug me when I leave. They do not have many friends here as most are back in Scotland. I think they enjoyed my company, even though I am a stranger.

Life after pancreatic cancer

 

Barbara Riddell

Kiama, New South Wales

Barbara is 63 years old. I know her as a family friend – her daughter and my sister are school friends – but not intimately. She has always lived with Irritable Bowel Syndrome and had her gall bladder removed at age 37. In 2013 she was diagnosed with two primary cancers – one in her pancreas and another in her kidney. As a result of treatment, she is now a type 1 diabetic. Barb does not travel far from home, and so we meet at her coastal home in Kiama, New South Wales.

 

There was only three weeks between my diagnosis and the first operation. Worried by a test result from a CT scan, my GP called me at work and told me to leave immediately and have another CT scan. Two days later I found myself sitting in what would become an all too familiar oncology office. The outlook was grim. I had emergency surgery the next morning (a pancreaticoduodenectomy, otherwise known as Whipple's procedure), where they found a 5cm tumour on my pancreas and another in my left kidney.

My life as I knew it was over. I could not return to work. My husband Ken took three months off. Our life plans changed.

After the operation I just didn’t want to be here. I didn’t want my family to see me not being able.

The 13 August this year will be the two-year anniversary of my operation. But two years later, no doctor really has a hold on my conditions.

I have always had Irritable Bowel Syndrome (IBS), which among other things means an inflamed gut and stomach. And when I had my pancreas removed, I became a diabetic overnight. But now, without daily medication vomiting and diarrhoea are the norm. I have lost at least 30kg since the operation. I can’t eat much, and I watch my diet. I have to: there is no sugar, no processed foods. But I don’t take vitamins or supplements. I don’t want to mask the symptoms. And I tweak my own insulin.

Speaking of her insulin, Barb gets up from the table and opens the insulin kit stationed near the sink. Without fuss, she sticks a needle in her abdomen, right through her shirt. She does not wince, and and she does not appear to particularly care which area she targets. I ask her whether she feels any pain. She admits that her abdomen is numb, and that she has not been able to feel it since the operation.

I feel best between noon and 3pm each day. The nights are especially difficult, due to the pain. Sometimes my eyesight is a problem, as well as the circulation to my feet.

I take at least 13 pills per day – some to settle my digestive system, some to compensate for the lack of a pancreas, but the bulk of the pills for pain and sleep management. Creon, Lantis and Nova Rapid to compensate for my removed pancreas, Rabeprazol for my digestive system, Endep for pain and sleep, and of course Endone and Oxycontin for the pain. These are my daily regime. The side effects are often profound.

I know Barb is in pain as we speak. She shifts uncomfortably in her chair, first on a reclining couch and then at the dining table as we eat. I wonder how much speaking with me is draining her, and how much she will pay for it later.

I need the medications. But month to month it does become expensive, even though I have private health insurance and my medications are covered by the Australian PBS and the National Diabetic Services Scheme.

I have had to adapt. Before we installed railings, I went down the stairs on my butt.

Barb looks sheepish at this admission, but I laugh. I have done the very same thing many a time during a Multiple Sclerosis relapse. This breaks the ice as only sharing the quiet indignities of chronic illness can.

Daily life can be dangerous. I have passed out in the shower. And I once fell on the stairs at night and remained there for two hours until Ken woke and came to find me.

I can no longer travel overseas. Apart from the physical limitations imposed by my medication and my bowels, it would be financial ruin if I were to become sick abroad. The best we can do is to see the rest of Australia that we haven’t seen.

We are going away in October for three weeks. We will drive from home in Kiama to Townsville, Darwin and Katherine, and then back through the centre of Australia. I will have a car fridge for my medications, and we will take it as slow as we need to.

I take each day as it comes. I don’t class myself as disabled. I don’t have a Health Card, although I do have a care plan through the local clinic.

And I have my family. I have a wonderful husband and two beautiful children. My wonderful husband. Before adopting our girls, we went through everything, including IVF and infertility. When you have been through that, it makes or breaks you. Divorce or separation is not an issue. It is enough to be together. Since the operation my libido has gone. But it is enough to hold each other each night, to have that intimacy.

I have good days and bad days, and there are still more good days than not.

I don’t want to be a burden on my husband. Burden is a terrible word. He wouldn’t see it that way, but I would feel like it. I keep telling him ‘I am on my way out, and afterwards I don’t want you to be alone’.

I can hope now. But when it comes to the crunch, I know what I will do. I haven’t spoken about it to my husband, but he knows.

I have my pills. I won’t ask anyone to help me, I just ask that they accept my decision.

I ask Barb about her girls, Jade and Andrea. Many years ago, I coached Andrea’s school netball team, and I wonder how as a young adult she feels about her mother dying.

I have not spoken to my girls, but I have written them a letter. I hope they accept how I feel and what I have said, because no amount of words can change the end result.

But maybe a child out of wedlock would be a good idea given the way I am going.

My mother died of colon cancer in 2006 when she was 78. For her, there was only six weeks between diagnosis and her death. Two years on from my own diagnosis, I see an oncologist every three months. The doctors can find no reason for my cancers. They simply are.

But the last test revealed high calcium levels in my blood. I think the cancer has returned.

At first I assume Barb is in denial. I restrain myself from interrupting, from calling the doctor for emergency appointment. But she is calm, she is matter of fact. This might explain the current pain. It might not. Barb feels no rush to confirm whether the cancer has returned, or whether there is yet another chronic condition that will slowly destroy her body.

I want people to know that they can deal with whatever comes. Even cancer. Just don’t think too far ahead, for it won’t bring you any joy.