Conscious Living – Page 176 – The Amateur's Guide To Death & Dying

March 30, 2016March 30, 2016

Humor and Hospice

by: Kelly Krenzel

When you meet Bill and Karen, you instantly feel the love they have for one another. Their faces light up with joy when they sneak a glance of each other. A quick wit and robust laughter are at the heart of their relationship. They take turns teasing each other in a healthy back and forth, always with a chuckle and a smile.

Married for 14 years, the pair has experienced many adventures together, one of which was their initial meeting at a tiny café in Luck, Wisconsin, where Karen says she noticed quite the “character” joking with the waitress one morning. She didn’t make much of it at the time until the following day when she returned to the café, and Bill (the character) was there again. He approached her and asked if he could join her for breakfast. “I said I suppose. I got a free breakfast out of it, why not,” Karen said with a laugh. They continued to meet up for breakfast for the following six weeks and quickly got to know one another. “She has not paid me back for one breakfast,” Bill added with a chuckle. After about a month, they went out on an official date, and according to Karen, “The rest is history!” Bill razzes Karen, “You lucky kid, you! I couldn’t run any faster, you were running after me!”

With the same sense of humor and positivity as when they first met, the couple is facing the biggest challenge of their lives together. Bill was diagnosed with lung cancer three years ago. Since then he has gone through multiple rounds of chemotherapy and radiation with no progress, including the last session when he tried a new type of treatment. “I got sick for about a week and a half. I mean sick–in bed, and when I finally got up, I was sick for another week after that. I couldn’t go anywhere or do anything, and then it was time to go back and get another shot. You get them every three weeks,” Bill explained. He and Karen talked with his doctor about discontinuing treatment. “I said as far as I am concerned, it didn’t do me any good except put me right down,” Bill said. “Isn’t this kind of a waste of my time, your time and whoever is paying for this? It cost me $1,500 each time, and that’s with Medicare and private insurance paying, too.”

After encouragement from his doctor, Bill and Karen enlisted the help of Hospice of the Red River Valley in July 2015. “You take the good with the bad. I’m not going to sit around and mope. That’s kind of silly to me. They have no cure,” Bill shared. Instead, he is focused on living the best life he can with time he has left.

Staying at home with the assistance of hospice is something Bill feels great about because he can continue to live his life and his hospice team is just a phone call away. “Hospice is a good thing to have. If we need something, it’s here,” Bill said. “They [hospice] actually do make it better, I have to admit. They give you a sense of confidence. While you’re here, they make you as comfortable as they possibly can. As far as I’m concerned, they are doing one heck of a job.”

Bill is especially fond of his hospice nurse, Kelcie, and social worker Robyn. Both make regular visits to see him. “They are just like family. That’s the only way I can explain it. They really are. If I need supplies, they bring everything I am supposed to have,” he explained. Bill jokes that he also gives Kelcie and Robyn a few pointers in their jobs because he is “quite a bit older than them.”

“Kelcie is great. With the medicine, you don’t worry about anything, and it sure cuts down on the expense. She checks on them every time she comes,” Karen said. “She has provided a lot of relief in just knowing everything is getting taken care of. Just to know that everyone is so helpful and friendly, that helps a lot,” Karen added. Kelcie also found out that the couple enjoys playing games, and right before Christmas she visited the pair with a surprise in-hand. “I’ll be darned if she didn’t come in with a game of Jenga,” Bill said with excitement. Karen notes with a giggle that Bill did not win Jenga when he played Kelcie, for the record.

“Bill and Karen have hearts of gold. It’s enjoyable to visit Bill because even if he is not feeling well, he makes jokes and asks how your day is going. At the same time, he is honest about his symptoms,” Kelcie shared. “Karen wanted to be able to keep Bill at home, and she does a fantastic job helping him and keeping track of his medications. It is nice to be able to help so Bill can continue to enjoy life and stay positive.”

Bill points out that he cannot identify just one thing he appreciates about hospice care, rather it’s everything about the care. “You can’t pick out one thing. You really truthfully can’t, at least I can’t. Everything I’ve experienced since I’ve been in it is great. There’s no way I’d have a complaint, and I’d argue with anybody who did,” Bill shared.

Karen wholeheartedly agrees with Bill. “It’s [hospice] is the best thing that ever happen to us. Emotionally, financially, everything. Hospice is a Godsend,” she said. “That’s a nice way of putting it, actually,” Bill echoed. Initially, both Karen and Bill thought hospice was only for the last days of life. “I thought you started hospice when there was no hope of anything. That’s definitely not true,” Karen said. “We didn’t realize how completely extensive the services were that hospice offers, including the 13 months of after-death support. Hospice makes the last months or years of your life much better. It’s a super organization.”

As the days go by, Bill enjoys many of the things he always has, like trips to Sandy’s Donuts every Monday, Wednesday and Friday, and visits to his granddaughter’s lake cabin near Perham. “I tell Robyn when we go to the lake for a weekend, that way she calls the [hospice] team down there to let them know I’m in the area in case something would happen,” he said. The couple has also planned a large family gathering in June of this year with 60-plus friends and relatives planning to come, including their five children and many grandchildren and great grandchildren. While they await the summer months, they spend each day appreciating each other and the love they share. “We’re lucky to have each other,” Bill said with a big smile.

Complete Article HERE!

March 29, 2016March 29, 2016

Physician-assisted dying: A Jewish community perspective

‘It may be impossible to achieve consensus on many of the issues surrounding physician-assisted dying’

By Shimon Koffler Fogel

"Surely we can all agree that every Canadian should have access to other means of alleviating suffering before contemplating a physician-assisted death," writes Shimon Koffler Fogel, CEO of the Centre for Israel and Jewish Affairs in Toronto. — “Surely we can all agree that every Canadian should have access to other means of alleviating suffering before contemplating a physician-assisted death,” writes Shimon Koffler Fogel, CEO of the Centre for Israel and Jewish Affairs in Toronto.

Physician-assisted dying remains a deeply personal and contentious issue among Jewish Canadians. Some in our community support physician-assisted dying, focusing on the plight of those stricken by a terminal or debilitating illness with no possibility of pain relief. Others oppose physician-assisted dying based on traditional religious grounds or due to concerns about a knock-on effect toward more broadly applied euthanasia.

The Supreme Court of Canada decision in Carter v. Canada recast this vigorous debate by determining that Canadians, under certain circumstances, will have a right to physician-assisted death. The remaining question is how this decision should be implemented.

While there is a vibrant diversity of opinion among Jewish Canadians on this subject, there are also points of unity that reflect common values within broader Canadian society.

Who’s eligible?

One such point of unity comes in the form of concern over the eligibility requirements for physician-assisted dying. Many who support physician-assisted dying base their position on situations of terminal illness or advanced stages of severely debilitating and painful diseases for which there is no relief or cure. However, the Supreme Court decision did not limit physician-assisted dying to such circumstances.

Parliament must now choose between two distinct approaches to physician-assisted dying. The first views physician-assisted dying strictly as an end-of-life option, a means for those who are nearing death to choose how and when to die. This is consistent across all North American jurisdictions where physician-assisted dying is permitted, including Quebec.

The second approach, predominant in European countries like Belgium and the Netherlands, does not restrict physician-assisted dying in this way. In these jurisdictions, children and individuals with psychiatric disorders or minor medical conditions can be eligible for a hastened death — considerations that played no part in the Supreme Court determination.

Quebec’s physician-assisted dying law, which was subject to significant, thoughtful deliberation and passed with strong, cross-party consensus, could be instructive for federal legislation in this context. In Quebec, a patient seeking physician-assisted dying must be competent and fully informed, at least 18 years of age, at the end of life, suffer from an incurable illness, be in an advanced state of irreversible decline in capability and experience constant and unbearable suffering.

Concerns persist

Even so, significant concerns persist regarding the balance between the right to physician-assisted dying set out by the Supreme Court and the conscience rights of health-care practitioners, including physicians, pharmacists and nurses. Many have deep religious, moral and professional convictions that consider referring their patients to another, willing provider to be an unconscionable act.

Yet Parliament’s special joint committee on physician-assisted dying recommended that, at a minimum, health-care providers who object to physician-assisted dying for reasons of conscience should be required to provide a referral. This disregards the Supreme Court instruction that “the charter rights of patients and physicians will need to be reconciled in any legislative and regulatory response.”

Several viable options have been put forward to balance the seemingly competing rights of patients and health-care practitioners. For example, the Canadian Medical Association has proposed a “separate central information, counseling and referral service” to which objecting physicians would direct patients seeking physician-assisted death. Another possible accommodation would require an objecting physician to notify a designated administrator of their medical institution, who would then be responsible for transferring care in a timely manner.

Others have suggested a model where physicians would be required to report all requests for physician-assisted death to a government body that would have a registry of physicians to whom it could refer patients.

Pleasing all parties

Whatever the specific approach, with creativity and thoughtfulness, the rights of objecting physicians and patients can be harmonized. What’s more, such a process would likely facilitate improved access to physician-assisted dying for patients. The Canadian Medical Association estimates that 30 per cent of its members would be willing to provide physician-assisted death. However, it is unlikely that the remaining 70 per cent would know to whom they should refer a patient. A third-party agent would be well-suited to ensuring timely patient access while preventing the violation of physicians’ conscience rights.

Regardless, physician-assisted dying must not be the only, nor the default, end-of-life option available to patients. While respecting the division of jurisdictional responsibilities, the federal government should do its utmost to ensure that palliative care of the highest quality is universally accessible and that first-rate psychosocial supports are made available to all Canadians separately from physician-assisted dying. While it may be impossible to achieve consensus on many of the issues surrounding physician-assisted dying, surely we can all agree that every Canadian should have access to other means of alleviating suffering before contemplating a physician-assisted death.

Complete Article HERE!

March 27, 2016March 24, 2016

Pet Peace of Mind

Keeping hospice patients and their beloved pets together.

If you’re a pet owner, you know that a dog, cat or other ‘furry friend’ can truly become a part of your family, a part of your world.

So it’s no surprise that those diagnosed with a debilitating or terminal illness sometimes worry more about their four-legged friends than themselves. What happens if they can no longer care for their pets? Where will those animals live once their owners are gone? Pet Peace of Mind is a nationwide program that helps hospice patients like Donna Sarner keep their pets near them during their end of life journey. The program also helps place the pet after the patient dies.

Here is Donna’s story as told by Kristine Murtz, Volunteer Services Manager and Pet Peace of Mind Program Coordinator at Cornerstone Hospice:

PetPeaceMind1_0 — In particular, Pet Peace of Mind demonstrates the holistic approach that is at the heart of hospice . The emotional connection that people have with their pets is one to be respected and nurtured.

Donna Sarner is 68 years old and lives in a small, rural town in Central Florida. She was diagnosed with adenocarcinoma of unknown origin, a cancer which causes her a great deal of pain throughout her back, abdomen and legs. She has no caregiver, no nearby family, and limited financial resources. Despite the challenges, Donna maintains a positive yet realistic attitude and wants to enjoy the time she has left with her dogs as well as the cats, vultures, raccoons and bears she feeds outside.

Donna was admitted to Cornerstone Hospice services in October of 2015 and is supported by a dedicated team who go beyond the call of duty. The many programs we offer are about helping patients and families feel like things are going to be “ok”.

In particular, Pet Peace of Mind demonstrates the holistic approach that is at the heart of hospice . The emotional connection that people have with their pets is one to be respected and nurtured.

Donna has taken better care of her pets—including the buzzards outside—than she has herself. She wants to have her dogs with her as long as possible, “until the very end.”

Donna’s Social Worker, Renee, had to wait several months before approaching advance directives and funeral plans with Donna, but PPoM visit opened the door to this by discussing how her “babies” will be cared for when she no longer can.

Donna spoke with pride about each of her dogs: Ozzie, a 6-year old Australian Shepherd/St. Bernard mix (I know, right?!); Roxy, a 5-year old Chow mix; Bertie, a 4 year-old Catahoula mix; and her beloved old guy “Highknee,” who is a 15-year old poodle mix. He’s only about ‘knee-high’, hence the name. Along with caring for the dogs, our program arranged to have the stray cats she feeds spayed, neutered, and vaccinated. We haven’t really considered what the buzzards might need!

Pet Peace of Mind volunteer Karen Sanders transported each of the dogs to one of our partner veterinarians to get them vaccinated and any necessary medications; she continues to deliver dog and cat food to Donna. We’re providing little Highknee with some medication for his congestive heart failure, and I’ve promised Donna I would personally care for him after she cannot. She also understands that it may not be realistic to have the three large dogs with her until the end, and we are already looking for loving homes for Ozzie, Roxy, and Bertie.

See the flyers below to learn about each dog.

Learn more about Pet Peace of Mind by visiting their website.

Complete Article HERE!

March 22, 2016March 22, 2016

Doctors should be trained in art of ‘diagnosing death’

By LIZZY BUCHAN

Doctors need to be trained in the art of “diagnosing” death to prevent unnecessary distress at the end of life, an expert has claimed.

Dr Erna Haraldsdottir, a senior lecturer at Queen Margaret’s University, in Musselburgh, called for a shake-up of thinking on medical intervention for the dying after watching her elderly father-in-law die in hospital.

The 84-year-old had been diagnosed with dementia five years beforehand and his family watched his gradual decline until he was admitted to hospital. Although he was elderly and very frail, doctors attempted to discharge him at one point and tried to resuscitate him as a “do not resuscitate” note had not been arranged.

Doctors were also reluctant to issue a death certificate as they were unsure of his cause of death.

Writing in the European Journal of Palliative Care, Dr Haraldsdottir said doctors need to change their mindsets over when patients need medical intervention and try to “diagnose” death.

Dr Haraldsdottir, who also leads a pioneering research programme at St Columba’s Hospice in Edinburgh, said: “In my own experience, our family believed my father-in-law had a good death, however what was noticeable was the staff’s lack of insight into the situation and understanding of what was happening.

“This caused the family unnecessary upset and distress – which could have been avoided if the medical team had applied the principles of palliative care to the assessment and care.”

Ministers unveiled a five-year plan to put palliative care at the heart of the NHS in December and to ensure a greater openness around death and dying.

It comes after a Glasgow researchers found falling numbers of Scots were dying at home, despite many saying it was what they wanted.

It is more important than ever for hospices to be leading the way when it comes to developing care around death and dying, said Dr Duncan Brown, medical director at St Columba’s Hospice.

Complete Article HERE!

March 21, 2016March 21, 2016

“Hospitals are not a good place to die”

End-of-life doula Anna Lyons on why we need to rethink our attitudes to death

By Anna Lyons

I’ve been with the dying many times, both in a personal capacity and as a health care professional. As an end-of-life doula my work is centred around supporting people and their families at end of life. My experiences have led me to agree wholeheartedly with the BMA in its recent report: hospitals are not the best place to die.

An overwhelming majority of us want to die at home, yet statistics show the reality is that 54% of us will die in hospital. But in my opinion, hospices are for the dying. Home is for the dying. Hospitals are not. The raison d’etre of end of life care is to help people experience a ‘good death’. We will remember how someone we love dies forever. The impact of a bad death is far-reaching. Candy Chang, creator of the ‘Before I Die‘ wall, a global art project that invites people to reflect on their lives and share their personal aspirations on a public wall, describes the fallout as creating ‘circles of mayhem’ for generations.

What is a good death?

Every person will have a different idea about what would constitute a good death for themselves or their family. Much of the debate over end-of-life care comes down to two questions:

Is a good death one where the medical team did everything to save a life?
Is this still true if there is little chance or no of a happy outcome?

Culturally, we have always seen a good death as one we have ‘fought’ against. It may be time to consider otherwise. Many treatments are aggressive and futile, robbing the last remaining quality of life a patient has.

Perhaps a good death is the accepted one. One where the dying person is in control, can be at home, can have their pain and symptoms managed. End of life care must be entirely individualised and person-centred, only then can we begin to offer the excellent end of life care that everyone deserves.

The refusal of a medical team to end active treatment to the detriment of the patient was exemplified in the death of a very close friend of mine. They threw everything they had at giving him longer than his twenty-something years. They didn’t give up ‘actively’ treating him until the end. He died clinging to the belief that he was going to live. That last precious year of his life was a tragic mess of chemotherapy, life-prolonging operations and colourless hospital wards. The treatment had destroyed the very essence of who he was, long before his heart played out its final beats.

I believe if we discussed end of life issues regularly, we wouldn’t find them so tricky to broach. Issues about death and dying should be taught in schools as part of the PSHE syllabus from primary and onwards. During Year 13 tutor time when we teach young adults to fill in job application forms, we should also be filling in advance directives with them.

Issues with control at the end

In a study by the Economist Intelligence Unit, the UK was crowned the best in the world for provision of end-of-life care. The author of the report, however, said that there is room for improvement, especially in symptom control and communication. Could this improvement be guided not by government policy or hospital administration, but by changing the way we look at death?

The recent BMA report concluded that some doctors continue to treat the dying when active treatment is no longer of any benefit. One reason it suggested was because of pressure from the patient and their loved ones. This is understandable – it is often too difficult to let go of the ones we love. The report also stated it is because if doctors acknowledge there’s nothing more that can be done, that they’re admitting defeat.

I knew a woman worked with the dying so when she was dying, although she knew there was nothing that could be done, she didn’t want to die. She wasn’t ready: she had a life to lead, a world to see and children to watch grow and guide. She was looked after by the same medical team she had worked alongside for many years. They couldn’t let her die either. If they let her die, they would have failed one of their own. They had to try, even though they knew it was futile. They couldn’t give up, even though they knew the treatment she would most likely shorten her life, not extend it. Her original prognosis with palliative care had given her up to a year. She died two weeks into aggressive treatment, four weeks after her initial diagnosis.

We should not see the death of a dying patient as a failure. Death is not the loss of a battle. Death is a natural part of life. If we could see it that way, we might be able to approach it differently. Our goal should be helping someone live as good a life as possible right up until the very end. No one will ever experience a “good death” if our focus is active treatment at all costs.

The report set out that treatment at end-of-life should be ‘appropriate and proportionate’. Dying with care, deference and dignity, and on our own terms is the very least we should be able to offer. A lady I worked with lived an incredibly full life: alone and happy. She went dancing and played snooker. She cooked everything from scratch everyday. Her breathlessness became untenable and she finally went to the doctor. She had cancer, which was slow to progress even though she chose a palliative care pathway. She accepted her life-limiting prognosis with the wisdom of one who knew herself well and contemplated mortality more often than many. She died in a hospice, surrounded by her family. Hers was a peaceful death. Peaceful and on her own terms.

One aspect of the report that I feel most strongly about is that doctors should be receiving training and CPD on communication and how best to have difficult conversations. One junior doctor who was interviewed for the report said: “I found it very difficult to talk to patients about dying, prior to working in a hospice, because…as a junior doctor we’re not taught very much…”

A shift in thinking

We all have to take responsibility for communication and the decisions we make. It’s terribly difficult when we’re unwell and vulnerable to hear these truths. If we’ve never considered end-of-life until our own life’s end it’s no wonder we find it so hard. If we discussed these issues regularly we wouldn’t find them so hard. We need to break down the ingrained cultural barriers that prevent us from talking about death and dying

Let’s all take on that responsibility. Let’s talk about it: openly and without fear. It’s too much to have that conversation for the first time when we are facing death. It’s much easier to talk about it while we’re living a healthy life.
We need to ask ourselves what is a good death for us.

Why do we value quantity over quality of time? Why do we cling so dearly to the notion that a life well lived is the longest? Sometimes doing nothing is the most courageous path. Sometimes accepting there’s nothing left that can be done is the bravest choice. Some may describe such a decision as “giving up”. Pursuing treatment until the very end, on the other hand, is lauded as “being a fighter”.

Do these words,”battle” and “fight”, compound medical teams’ feelings of failure when an unavoidable and imminent death is in front of them? Changing our language may help us to change the way we think. Illness and death are a part of life. Loss is not a failure: not ours, and not our doctors’. Perhaps redesigning our expectations and language at end of life could begin with Paul Kalanithi’s beautiful words:“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.” If they did, I believe death and dying could be a richer and better experience for everyone involved.

Complete Article HERE!

March 20, 2016March 20, 2016

With Fear, Determination And Poetry: How Great Writers Face Death

By The NPR Staff

Children’s book author and illustrator Maurice Sendak, who died in 2012, spent much of his life obsessed with death. In 2011 he told Fresh Air’s Terry Gross: “There are so many beautiful things in the world which I will have to leave when I die, but I’m ready, I’m ready, I’m ready.”

Katie Roiphe’s preoccupation with death goes back to her childhood, when she contracted virulent pneumonia at the age of 12. She was sick for a year and thought she was going to die.

Her terror of death was reignited many years later when her father died. It was then that Riophe found herself turning to great minds to see how they confronted mortality.

She initially told herself that she wanted to “understand it better,” she tells NPR’s Melissa Block, but she soon realized that was a lie. “I was actually trying to see it,” she explains. “It sounds really simple, but it’s actually a very difficult thing to do. So that was my goal, to sort of focus in really closely on the final days of these writers and thinkers, and just look.”

In The Violet Hour, Roiphe describes the last days of Sigmund Freud, James Salter, Maurice Sendak, Susan Sontag, John Updike and Dylan Thomas. She talks with Block about how these writers and thinkers accepted, or railed against, their fate.

Interview Highlights

On John Updike, who wrote poems in the hospital after being diagnosed with lung cancer

It was amazing. He had very little time — just weeks before he was dead. I actually went up and looked at the manuscripts and you can see in his handwriting how arduous it was. At that last moment, when most people would just be watching television or railing against the universe, that was what he did and I found it very moving. …

The poems have a sort of quality of reporting — that he’s bringing news. And he talks about writing as turning pain into honey, which I find a really beautiful way to think about what writers do: taking this incredibly awful — maybe the most awful thing that can happen to you — and turning it into honey just with words.

On Susan Sontag, who endured brutal treatments for cancer

She had written so eloquently about the importance of not turning illness into a metaphor — of not embellishing and fantasizing and being really realistic and rational when it comes to your own illness — and she was unable to do that ironically in her own life. …

She thought to herself she would be the exception even to the rule of mortality. That somehow, as she had with her earlier cancers famously, she was going to defeat death in some way. And even though the odds were against her — she was 71-years-old getting a bone marrow transplant — even in those situations, she felt this time she wouldn’t die.

At the one hand, it’s the opposite of a good death, it’s almost the anatomy of how you don’t want to die. On the other hand, I did see something kind of heroic in the power and force of her will.

On how mortality was a constant companion for writer and illustrator Maurice Sendak

He was certainly preoccupied with death for his entire life, and one of the things that fascinated me about him is the way, in his art and famous children’s books, he worked on this problem year after year. Like when his parents died, or when his brother died, he just kept working on this problem and worked it through in drawing after drawing and draft after draft. And he sort of came out freeing himself to a certain extent from this obsession. He was very depressed at certain points of his life and he used his art as a way of countering that. It was a sort of medication for that almost.

On Sendak owning John Keats’ death mask

It’s really very beautiful. When I saw it — he has it in a guest room with a blue bedspread — there are kind of stuffed animals on the bed. It’s a very bizarre scene and very Sendak, and I thought to myself, “Who would ever want to own Keats’s death mask?”

And then I looked at it and I realized I knew exactly why you’d want to own Keats’ desk mask: Because in a way what I was doing in this book was writing death masks. That urge to preserve the moment, and Annie Leibovitz did it with her famous photographs of Sontag, and Sendak himself drew the people he loved: his partner of many, many years after he died, and his family members right before they died.

There’s something about capturing that moment in art that I actually do completely understand — both the reason you’d make Keats’ death mask and the reason you’d want to own it.

On her idea of what a “good” death would be

I feel like the thing that mostly happened with this book is I came away marginally less afraid, which sounds like not that a big deal. But given my panic about death at various points in my life, [this] was liberating to me. In terms of a good death, I did feel that this prolonged medical struggle of a Susan Sontag where you’re chasing after any possibility of medical salvation seemed like not a good idea, and the way of working your way into accepting what’s happening the way Sendak did and the way Updike did seems preferable to me.

But one doesn’t always have control, and that was one of the things I really realized in writing about these deaths.

Complete Article HERE!

March 19, 2016March 19, 2016

‘I’m 16. Five months ago, I was diagnosed with terminal cancer’

Now I measure time in distinct chunks, focusing on events – a holiday or a party. Although it has been an intense few months, I’ve tried not to dwell on it

By Max Edwards

Five months ago, I was diagnosed with terminal cancer aged 16. It was rather as I’d pictured GCSE results day to be: a lot of stress waiting for potentially awful results, although, as it happened, GCSE results day was a pleasant surprise. But, like many whose grades came as a disappointment, I got over it soon enough. I think it’s surprisingly easy to adapt to this kind of news. After all, while I’m not going to deny its personal significance, it doesn’t really change anything important.

In the past, I have imagined terminal illness as the short and depressing period before a person’s premature death, but it somehow doesn’t feel nearly as dramatic or upsetting. I don’t feel as though normal life has ceased, or that my perception of it has changed drastically. In fact, if it weren’t for my loss of mobility following an operation, my life would have probably settled back to normal long before now. The assumed tide of unimaginable suffering that rests hand in hand with these kinds of situations is rather less dramatic in reality.

Being told you are going to die is a shock, but I was largely over it in a week, and as for breaking the news to friends and family around me, the guesswork on my part of trying to assess the other person’s emotional fragility, their guesswork at trying to assess mine, and the background danger – perhaps felt by both of us – that your partner in conversation is about to break down in tears, made the experience not so much sad as really quite awkward.

This isn’t to say that it hasn’t been an intense few months, but I can’t say that this experience has truly changed me as a person. People have told me how well I’m coping and how they couldn’t have done the same in this situation, as though I’ve faced an unimaginably horrendous set of circumstances and managed to do the impossible (remain positive), but I don’t see it that way.

While I understand why it may feel like that to those looking in from the outside, dying of cancer, in my experience, has been a succession of hospital visits, a lot of pills, and one or two pieces of bad news. But after that, there is an inevitable return to the way you were previously living. Pretty soon I came to realise that it doesn’t make any difference if you’ll be dead in 10 years or two months; you still get up, have a shower and make a cup of tea.

OK, so there are drawbacks – in my case, largely a lack of movement. After the operation on my spine, I was all but paralysed in my dominant hand, movement was compromised in the other and I could barely move my legs, all of which meant I could no longer write, walk, or play the guitar and clarinet. These limitations didn’t seem to matter when I was still in hospital, but as I left bed eight, ward 27 and returned home, I was confronted by all I could no longer do. At first, when the seriousness of my illness was still a new and shocking discovery, the issue of not being able to walk to the toilet seemed dwarfed by this drama, and it was only later that these kinds of problems started to irk me.

Nonetheless, I’ve found that these problems start to sort themselves after a while. For example, I was at first stretchered around the hospital. As my mobility improved, I spent more time in a wheelchair, which at least gave me the luxury of seeing where I was going. Currently, I walk with a stick, which of course resolves many difficulties, and I can now eat at a restaurant without having to sit half a mile from the table because the wheelchair won’t fit underneath.

Where there hasn’t been a significant improvement, such as in my right hand, I’ve tried to make up for the problem. Unable to play any instruments that require two hands, I’ve begun learning the blues harmonica (which only requires one – at least it does the way I play it) and, while practising writing left-handed, I now type on a touchscreen phone, this being how I continued to write my weekly blog and my recently published book. In addition to this, I’ve continued to write songs and music by composing on the computer. I suppose I can at least be glad to live in an era when technology makes this possible.

Religion has featured a lot in discussions since the diagnosis. I am told that many people are praying for me and I have prayed myself, though I never thought it would make a difference (I only did it on the off chance that something positive might happen – what’s to lose?). I don’t believe in God; I didn’t before my diagnosis and I don’t now. I can see how some in my position may want to turn to religion as a comfort, and I can also see how many may become disillusioned or even angry with the God they thought they believed in. But I have done neither. Most of my frustration has fallen on nurses and medical staff for the most trivial of reasons.

003 — Max Edwards with his sister Esme, 14, and brother Toby, seven, decorating the Christmas tree, 2015.

As for comfort, I don’t feel I need comforting. The initial shock wears off very quickly, and after that, life seems to become quite ordinary. The satisfaction of daily routines is enough in the way of comfort.

One thing I have started to do is measure time in distinct chunks. Ordinarily, I would allow days to blur into weeks, weeks into months and months into years. After my operation, however, I’ve found myself focusing on certain events. A holiday, for example, or a day trip, or a party. Perhaps my perception of time has changed, or maybe it comes from a lack of ways to fill the day, although that’s becoming less of a problem now that I’m more mobile and have been able to get more done, such as schoolwork (AS-level history), which I’ve just restarted.

In terms of where I want to be, my main hopes for the future are life-expectancy-related. This is one thing that still gets to me: I’ve more or less made peace with the idea of death, but it’s the question of when that is still a daunting thought. The (almost) inevitable growth of my cancer means it is likely to come some time soon, but I still don’t know when exactly, and I’m not sure I want to.

Regular MRI scans will probably give me an indication of how bad the situation is as and when that becomes the case, which means there is more bad news in store for me. I considered not having any further scans, but then I’m sure I’d panic with every slight pain or possible symptom of tumour growth, and given that I already interpret a headache as, “OH MY GOD, IT’S SPREAD TO THE BRAIN AND I’LL BE DEAD WITHIN A WEEK!”, I’d rather not venture any further down this route.

I am sure the expectation of death is worse than death itself. True, they say death is the worst single thing that can happen to you, and given that I can’t trick myself into believing there is an afterlife, I imagine it leads only to an empty void, but I’ve found ways to accept such an idea. First, I look on my life, which I believe has been a modest success, and remember that it could not have occurred in any other way. The only possible way I could have had my unique set of experiences is by living my life as it is, and that means dying when I die. Even if I’m wrong, and there has been more unhappiness than I care to remember (rendering my life “unsuccessful”), death – the absence of pain or pleasure – should then logically be seen as an improvement.

I also remind myself that the experience of dying is not unique to me. Whether it happens aged 16 or 95, experiencing the end of everything you know is the same process – it’s just that I and those around me are forced to come to terms with this fact prematurely.

Finally, I feel it has helped to process the whole issue selflessly. Some people might find it helpful to know that they are loved, that people care about them and that they won’t be forgotten when they die. I can understand this and I see how it’s comforting, but I also find it consoling to take the opposing view: stop dwelling on personal suffering and carry on as before.

This approach seems to help deflate the hype that terminal diagnoses carry. Pity, grief and sympathy are all natural emotions, and they certainly have their place, but I’ve found the message of “Stop whining and get on with it” far more effective. Stoicism, I feel, is more effective than grief: a simple reality-check helps to set my perspectives in place.

It helps to remind myself that even if I’m dying, it’s not all about me. At the end of the day I’m one in seven billion, a number that – like my cancer – will continue to grow and multiply over the coming months and years. While my life may be all I know, I’m nothing more than a dot on this planet. When you take into account the dozens of people I know, the billions I don’t, the thousands of miles that separate us, and the ever running river of time on which we all finitely float, you may come to the inevitable and strangely comforting realisation that we are all going to die: me, you and everyone else. Get over it.

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