Sunday, 04 February 2024 04:42

‘My life will be short. So on the days I can, I really live’: Dying people explain what really matters

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Philippa Kelly

‘I don’t sweat the small stuff any more’

Mari Isdale, 40, Greater Manchester, England

In 2015, Isdale, then 31, was diagnosed with stage four bowel cancer and given 18 months to live. Despite a period of remission and 170 rounds of chemotherapy, the disease has since spread to her lymph nodes.

I always thought, “I’ll get my career sorted, then we’ll get married, have children, go travelling.” And then cancer happened. You grieve for your future self. Your imagined children and your career. If I died tomorrow, what I’d be saying on my deathbed is I regret not spending enough time with my family. So that’s what I focus on.

I have a “Yolo list” of things I want to experience in life and my husband and family work very hard to ensure we do as many of them as possible together. They’ve taken me snorkelling in the Maldives, hot-air ballooning over Cappadocia and snowmobiling in Iceland. We’ve stayed in a cave hotel, seen the pyramids, the Colosseum, and flown in a helicopter over New York. We’ve hand-fed tigers, taken the Rocky Mountaineer train, been paragliding and seen the tulip fields of Holland.

My life is most likely going to be short, so on my good days, when I’m well enough, I really live. I go out and do anything I want: for a nice meal, to the theatre, cinema or an escape room.

My illness has changed the way I prioritise things. Although I loved my career as a doctor, it often meant long hours, missing out on Christmases and birthdays, exams, stress. Giving that up is a big sacrifice, but it’s one I’m willing to make to gain more time with my loved ones. It is ironic that it took being told I was dying before I really started living.

Anything that doesn’t make my heart sing is less important to me these days. I don’t sweat the small stuff any more. Life is too short for cleaning. The laundry pile will wait. And if I want to eat a piece of cake, I damn well do.

‘Don’t waste energy fighting’

Michèle Bowley, 57, Basel-Stadt, Switzerland

After Bowley found a lump in her armpit in summer 2020, a biopsy revealed breast cancer. The disease spread to her lungs, liver and bones, and in late 2021 she was given a prognosis of three to six months.

Accept yourself and your situation. Don’t waste energy fighting. The most important things in life are other people. Pay attention to your needs and do what makes you happy. Do something creative, learn something new, get involved in something that matters to you. Enjoy your life to the last breath.

I have no regrets. I’ve always done what was important to me and have reached my full potential regardless of what others expected or thought of me. I’ve had a fulfilled life; I’m ready to go.

‘Having a sense of purpose brings joy’

Mark Edmondson, 41, Sussex, England

In 2017, Edmondson was diagnosed with colon cancer. After doctors also discovered more than 30 tumours in his liver, he was given a year to live. He has since undergone more than 140 rounds of chemotherapy and over 30 operations.

Prior to getting cancer, I had ambitions of becoming a managing director or CEO; I wanted to achieve something in my career. Within hours of the diagnosis, that disappeared. I don’t care for work any more, but I believe strongly in having a sense of purpose, something to motivate and distract you, and bring joy and satisfaction. I get that from the business I started: a support service for anyone facing adversity. If someone had said, two years into my treatment, “Do you feel able to support other people through their diagnosis?”, I would have said no way. But as time has passed I do, and I’ve spoken to more than 100 people. I love coaching and mentoring. I’ve never been happier.

I lead every session with this quote and loop back to it at the end: “It’s not what happens to us, but how we react that defines who we are.” So how do you want to be defined? Cancer or no cancer, that question should dictate how you live.

I’m a big believer in being as honest and open as possible. Men are notoriously bad at sharing our feelings, but I want to change that for my boys.

We get pushed along in this world by consumerism, but it doesn’t matter what car or house we have, as long as we’re comfortable. What really matters is love, relationships, kindness, caring for people, being around people. I want to create the best relationships I can, and live the happiest life I can, because I no longer know what my timeframe is.

‘It’s not about the quantity of time I’ve got, it’s the quality’

Chris Johnson, 44, Tyne and Wear, England

In 2019, Johnson was diagnosed with a rare gastrointestinal cancer. In 2020, hundreds of small tumours found on his liver led to a prognosis of two to five years.

I’ve got limited time, so I’d rather be doing things with family and friends, and having a positive impact on the world around me. I’m not in the office wearing a shirt and tie any more. In 2021 I was running marathons, and last year I completed the National Three Peaks Challenge.

Fundraising has been the main driver but exercise also helps with the side-effects of my treatment, though as that progresses, it’s becoming harder to do long distances.

I still care about politics, the climate and my football team, but I don’t get stressed about them any more. It’s not about the quantity of time I’ve got it, it’s the quality.

People talk about beating cancer or winning. I’m never going to beat cancer, it’s not an option. At some point it will kill me. But until then, how I live my life is my version of winning.

‘Cancer sorts out what really matters’

Siobhan O’Sullivan, 49, New South Wales, Australia

After feeling unwell for two weeks, O’Sullivan was diagnosed with ovarian cancer in August 2020. It had already spread beyond her ovaries, and did not respond to chemotherapy.

I have a lot of colleagues and friends around the world, and people have mailed me gifts from every corner of the globe. An English friend flew out to see me for three days; he spent longer in the air than with me. This is the kind of generosity of spirit that people have shown me and it’s been very moving.

Cancer has been extremely effective in sorting out what really matters and what doesn’t. I was always a very busy person, and if I was meeting someone for lunch at 1pm and they strolled in at 1.20, I might have been irritated. Now I’ve realised none of that matters. I would love to have had this insight and these connections without having to go through this cancer bullshit. But I don’t think there’s a shortcut to it.

Siobhan O’Sullivan died on 17 June 2023.

‘Sharing your feelings helps’

Harry Soko, 59, Salima, Malawi

In July 2020 Soko noticed a pain in his right thigh. A year later he was diagnosed with skin cancer, which will significantly shorten his life: a 2014 study at the care centre where he is being treated found only 5% of patients with the condition live more than five years.

Normally we say, “If you are suffering from cancer, the immediate result is death.” So my family accepted it. The community accepted it. When I’m alone or sleeping, it comes to me: “Why am I suffering from cancer? How did I get it?” It takes time to accept. But if you share your feelings with others, you become free. You have no worries.

‘My illness stripped me of my fears’

Juan Reyes, 56, Texas, US

Reyes was diagnosed with ALS in 2015; he’d had symptoms for two years, and the average survival time is three. In the next six months he became a wheelchair user; he has since lost the use of his hands.

I’m very much an introvert, quiet and reserved, and afraid of public speaking. Having to live with ALS has stripped me of many of my fears. I’ve always had a very silly streak with close friends and family, and now I use that as a power, to entertain and educate through comedy.

The first time I did standup was in October 2019, at a fundraiser for ALS I’d organised at a local comedy club. I didn’t intend to do it, but as I was opening the evening, I took a chance. Afterwards I felt incredibly alive.

I also went skydiving six months after diagnosis. The first step out of the aircraft took my breath away. The rush of air was deafening, then I was suspended above the landscape. The serene silence, interrupted by the rustling of the canopy, was life-altering. I’m so glad I experienced this. I’m dying, so what is there to fear?

‘Stop worrying about having a good job or needing a big house’

Caroline Richards, 44, Bridgend, Wales

Her son was 16 months old when, in 2014, a swelling in Richards’s stomach was diagnosed as bowel cancer. She was told that, with successful chemotherapy, she would probably live for two years.

These past nine years have been really good, probably better than if I hadn’t had cancer. Different things became a priority: spending time together rather than worrying about having a good job or thinking you need a big house.

In a way I feel lucky – I could have died when my son was three or four. I feel as if I’m living on borrowed time. But he knows me. He’ll remember me.

‘Find gratitude’

Tyra Wilkinson, 50, Ontario, Canada

A family history of breast cancer meant that when Wilkinson was diagnosed with the disease in 2015, she had already made plans for a mastectomy. Seven years later, the cancer had returned and spread to her spine, making it incurable.

My husband and I had plans for when our kids were grown. We have always said we’d be the most fit grandparents, playing with our grandkids on the ground. Even if I’m alive I won’t be able to be that grandparent, because I’m just not capable of doing that stuff now.

Find the gratitude for what you have because it can always – and will always – get worse. Be grateful for all the things that are going your way right now.

‘Go to the parties. Stay out late’

Amanda Nicole Tam, 23, Quebec, Canada

After noticing symptoms in January 2021, Tam was diagnosed with amyotrophic lateral sclerosis (ALS) that October – five days before her 21st birthday.

I wish I had gone out more with my friends. I wish I had gone to parties and stayed out late. Living life free-spirited is something I feel I missed out on, and I regret that I didn’t take advantage of that when I was younger. Life is short and you should live it how you want, regardless of what people think. Don’t hold back. Say what you want to say and do what you want to do.

‘Have a goal. Don’t accept defeat’

Mark Hughes, 62, Essex, England

More than 20 years ago, pneumonia led to the discovery of a tumour in Hughes’s lung. Surgery was successful, but the cancer had spread to his lymph nodes. In 2010, a rare form of the disease, which is now terminal, was found in his bones.

It’s about having a goal, a purpose, setting your sights somewhere. I won’t be beaten down or accept defeat. The only way is forward, and there’s always a finishing post I’m aiming for. If you get knocked down, get back up, brush yourself down and go again. That’s what keeps me going.

‘You are enough; you make a difference’

Chanel Hobbs, 53, Virginia, US

At 37, Hobbs found herself unable to run without falling; she was diagnosed with ALS and given a life expectancy of up to five years. She is now dependent on a ventilator and feeding tube.

Before my diagnosis, I was very independent. I prided myself on doing things on my own. But I’ve learned that others really want to assist, and it brings them joy knowing they can make a difference, however small.

I always used to plan every single facet of my life. I wish I had been more spontaneous and done things when they crossed my mind. For example, looking out the window and wanting to go for a walk, but doing housework instead. How I yearn for a walk today. Now I give myself grace. I have learned not to compare myself with others. Find what makes you feel meaningful. Remember: you are enough, you are human, and you make a difference.

‘No matter how you feel, get up, get dressed and get out’

Simon Penwright, 52, Buckinghamshire, England

In the early hours of 24 January 2023, Penwright was woken by an unpleasant taste and smell. Doctors discovered three brain tumours, one covering half of his brain. He was diagnosed with an aggressive form of glioblastoma and given less than 12 months to live.

It would be so easy to wake up in the morning and just lie in bed. I’m not a gym person, but when I’ve done a bit of exercise, I feel fantastic. No matter how you feel, get up, get dressed and get out.

If you’re OK one minute, then have a cardiac arrest and you’re gone the next, your options are taken away. So I guess I’m grateful that I can get organised and make the most of my relationships. I’d take this route every time.

‘I’ve stopped caring what others think’

Sukhy Bahia, 39, London, England

Diagnosed with primary breast cancer in 2019, Bahia was given the all-clear by her oncologist in March 2022. Five months later, she discovered the disease had spread to her bones and her liver.

I’m a single mum. It’s heartbreaking because you think you’ll be around for your kids for a really long time. My daughter is nine and my son is six, and I’m completely transparent with them about my health. I’m hoping to leave things for when I’m not here – birthday, graduation, wedding, new home, new baby cards, and a cookbook of all their favourite recipes. I’m also planning video blogs, giving advice on things they may not be comfortable asking anyone else, like consent and puberty.

I want them to know that they never have to impress anyone or try to fit in, and that milestones are bullshit. Nothing needs to be done by a certain age or time; you can always change what you want to do in life.

I’ve stopped caring what other people think of me. From my teens, I always wanted a full sleeve tattoo. Last year I decided to start one with the birth flowers of my children, to show how much they mean to me.

My kids love them; my parents aren’t over the moon, but they accept there are worse things I could be doing with my life.

‘Never create a new regret’

Kevin Webber, 58, Surrey, England

On holiday in 2014, Webber noticed he was visiting the bathroom a lot. Soon after he was diagnosed with prostate cancer and given four years to live.

I don’t have many regrets. Maybe I wish I’d taken my kids to school more. When they grow up, you realise that meeting you had at work, you could have probably moved it back an hour.

In that moment, when you know it’s over, I don’t want to look back with any remorse. You can’t change yesterday. Never creating a new regret is an important way to live your life.

I have three missions every day. Enjoy myself, but never at the expense of someone else. Try to do some good – and that doesn’t have to be raising 10 grand for charity; it can be smiling or giving someone a seat on the bus. And make the best memories, not just for you on your deathbed, so you can lie there and go, “Oh, that was great when I did that”, but for everyone else.

‘I realised what I really wanted to do’

Sophie Umhofer, 42, Warwickshire, England

In 2018, after 10 months of tests for conditions such as IBS and Crohn’s disease, Umhofer was diagnosed with bowel cancer, which had spread to other parts of her body. She was told she could live for three more years.

Initially I felt as if I had to cram the rest of my life into the couple of years I’d been given. I’ve written birthday cards and letters for my kids until they’re 21, preparing them for me not being here.

Obviously I wish it hadn’t been cancer that caused this, but I’ve changed so many things about myself. Before my diagnosis I would get very stressed out. I had this perfectionism when my kids were young that they had to have routines. I spent so much time being worried about things I didn’t need to do. And once I became a mum, I sort of gave up what I wanted to do.

I regret that I didn’t take action for myself a bit more. But this diagnosis meant that all of a sudden, I realised what I really wanted to do. When I was going through chemo I was trying to find things I could do to keep myself entertained, and I started watching motorsport. When I got a bit better I actually entered a competition and got through to the finals. I ended up getting a job in motorsport and now work full-time looking after a team. I wish everybody could see how much better life can be if we change the way we think.

‘Leave the damn house’

Arabella Proffer, 45, Ohio, US

In 2010, Proffer was diagnosed with myxoid sarcoma. Ten years later, the rare form of cancer was found to have spread to her spine, lungs, kidney and abdomen. Told to get her affairs in order, she now plans her life two months at a time.

A year before I was first diagnosed, my husband had joked, “Hey, why don’t we cash out our retirement and follow Motörhead and the Damned on tour through Europe?” When I got the diagnosis, I thought, “We should have done that.”

My mantra is to leave the damn house, because you never know what’s going to happen if you do. No interesting story ever started with, “I went to bed at 9pm on a Tuesday.”

‘Just buy it. Do it. Go and get it’

James Smith, 39, Hampshire, England

In 2019, Smith noticed a twitch, then a weakness in his left arm. Two years later he was diagnosed with motor neurone disease (MND).

When I was told I’ve probably got only a few years to live, my wife was pregnant with our youngest. In the back of your mind you’re thinking, “Am I going to see them get married? Have kids?”

I did turn to alcohol, but it wasn’t doing me any favours; I was using it to block out what I didn’t want to think about, so I nipped it in the bud. Now I’ve come to terms with what I’ve got and I just take every day as it comes. I focus on what I can do, not what I can’t do. I had to give up my career as a barber, but I’ve found a new passion in creating my podcast, which shares my story and those of others to raise awareness of MND. Talking to others and relating to people going through the same situations as me is like therapy.

It’s horrible to say it takes a terminal illness to actually live life, but when I hear people going, “I’d love to do that”, I realise getting diagnosed has put a different perspective on life. I used to think, “I won’t buy that because I don’t know what’s around the corner.” Now it’s just buy it, just do it. If you want something and can afford it, go and get it. If you want to do something and you’ve got the means, go and do it.

‘I soon realised what I liked about life’

Ali Travis, 34, London, England

At 32, Travis began experiencing severe headaches. After an MRI revealed a mass the size of an orange on his brain, he was told he had a glioblastoma and his life expectancy was 12 to 14 months.

Last year was the best year I’ve had because in a very, very short space of time, I realised what I liked about life. It’s the closeness of relationships, old friendships. And, for me, being a geek.

If I’d been hit by a bus, I’d have been a stressed guy with a load of problems who couldn’t see past the end of his nose. So, despite all the surgeries, the constant chemotherapy, the radiotherapy, I would choose this route.

‘Look after yourself first’

Sonja Crosby, 55, Ontario, Canada

In 2012, doctors discovered a tumour on Crosby’s left kidney. She was diagnosed with a rare form of cancer, and most organs were removed from her left side. In 2017 she was given six months to live.

Cancer focused me more precisely than anything else I can think of. When my doctor told me I had a few months left, I said, “Can we put that off another six months? I have this big project at work I want to finish.” He said, “No, you have to be your priority now, not work.”

You can’t manage all aspects of your life. I’ve realised it’s not selfish to look after yourself first, that your friends and family will do a lot more if they know you’re open to receiving help.

‘My favourite saying is: it is what it is’

Rob Jones, 69, Merseyside, England

In October 2012, Jones was told he had bowel cancer that had spread to his liver. He had 27 rounds of chemotherapy.

I’m not a bucket list person; I don’t go through life saying, “I wish I’d done that.” My wife says I’m one of the worst people in the world to buy anything for, because if I want it, I get it. It’s the same in life, if we can afford it. But I’ve never had dreams of doing a world cruise or a flight to America. I’m a home bird really.

I read once that cancer victims are lucky in life, because they generally have a timeframe of when they’re going to die. They can put their life in order, say goodbye to loved ones, ignore all the people they’ve tolerated to be polite. Whereas people who have a massive heart attack and die on the spot, they don’t have that opportunity. I sort of get that now. But I’m not allowed to talk as if the end of the world is nigh, because everybody thinks I’m invincible. Of course, none of us are.

My favourite saying is: it is what it is. If we had the choice, we’d all live a long, happy life. But when would we choose to die? There isn’t a convenient time.

Rob Jones died on 28 July 2023.

‘What’s the point of earning, earning, earning, if there’s no joy in your life?’

Jules Fielder, 39, East Sussex, England

In November 2021, Fielder was diagnosed with double lung cancer, then shortly after told the disease had spread to her spine and both sides of her pelvis.

You get caught up in that world of work: pay your bills, eat dinner, sleep, repeat. But now I truly feel very different about money. What’s the point of earning, earning, earning if there’s no joy in your life? When I watch really power-driven people who want more and more, I want to tell them it’s the small things in life that are beautiful. We live in quite a toxic world, but it’s your choice what you expose yourself to. I get up, I walk my dog, I listen to every single bird that chirps. I’m grateful for that.

‘Be authentically you’

Mike Sumner, 40, Yorkshire, England

While on TV show First Dates in March 2020, Sumner noticed a loss of movement in his foot. Eight months later he was diagnosed with motor neurone disease. He has since married his date, Zoe.

I don’t waste time now. Life is too short to be doing any shit you don’t want to. Concentrate on making the memories you want and never say no, never make excuses. Do things you’ve always wanted to do. We went to Los Angeles to see the Back to the Future set at Universal Studios. I’ve been meaning to go for years. It was our little pilgrimage.

In the short term I keep positive by thinking about weekends, because we often go away and do something fun – next weekend we are going to a classic car show. In the longer term, I look forward to our next holiday – we always go to Orlando. When I feel the warm air on my skin, and hear the crickets of an evening, it lifts me emotionally.

Day-to-day I look forward to Zoe coming home from work so I can give her a cuddle. I look at my model car collection and think about the happy memories I have of driving. When I feel a bit low, I treat myself to something nice to eat – pizza, a burger or a battered haddock – while I can still enjoy food.

You have to be authentically you. But try not to moan because there’s always someone worse off than you. Focus on the positives; there are always some. For example, I’m married to Zoe.

‘Keep things simple’

Alec Steele, 82, Angus, Scotland

In 2020, while in hospital for a routine checkup, Steele collapsed. Tests revealed idiopathic pulmonary fibrosis – which causes scarring on the lungs and leads to difficulty breathing – and he was given a prognosis of one to five years. He now requires a 24-hour oxygen supply.

The first six months after diagnosis were dreadful. I was trying to get all my affairs in order, and I told my medical team I was determined to have one last game of cricket. The physiotherapist and I worked as hard as we could, and in late April 2021 I got my game, wicketkeeping with oxygen strapped to my back. A photographer took a photo and put it on the internet. It is now displayed at the Oval, next to Ben Stokes’s photo. Last year I had 16 games, which has just been wonderful.

I’ve realised I have to keep things as simple as possible. I soon learned that negative thoughts were destructive and I trained my mind to work out those you can do something about and those you can’t. If it’s the latter, discard them. If you can do something, work out what and get started to tackle the problem.

‘Switch every negative to a positive’

Kate Enell, 31, Merseyside, England

In July 2021, less than a month after finding a lump in her breast, Enell, then 28, was diagnosed with stage four breast cancer. It had spread to her liver and bones, and has since moved to her brain.

For two days after being diagnosed I locked myself in the bedroom; I didn’t see or speak to anyone. But on the third day I thought, “Wait – if I’ve only got a short timescale, do I really want my little boy to see me miserable?” Now I just try to do as much as I can while I’m here. I’m quite good at switching my brain now. Say I get upset about not being able to have more children, I switch it round and think, “Well, I am a mum.” Whenever there’s a negative, I try to switch it and keep positive.

I feel like I’ve had some of my best times in the first few years of my diagnosis, because it makes you home in on what’s important. Everybody around me has made more of an effort, we’ve done lots of family events. It’s made us realise that what’s important is spending quality time together.

‘Success, status, reputation – they are not important’

Ian Flatt, 58, Yorkshire, England

Flatt had always led a very active life, but in April 2018 he began struggling with severe fatigue. By the following March he had been diagnosed with MND and he has since lost the use of his legs.

I can categorically say that the things I valued and felt were important are not important. Success, status, reputation – they pay the mortgage, but I think I lost myself a little bit in all that. I’m much more emotional and empathic now. I’ve always been a reasonably popular guy, I have friends that go back 30-odd years, but I’ve never had the depth of friendship that I have now. Or maybe I had it and didn’t appreciate it.

What’s important now, every day, is to find some joy. I look out at the birds, the trees – I’ve a favourite one I can see out of my bedroom window. Through being a bit reckless, I lost the use of my legs sooner than I would have. I remember accepting that and thinking, “OK, I’m not going to walk, so let’s go out in the tangerine dream machine [his off-road wheelchair].” We went out, had a pint of Guinness, and now my memory of that day is a joyful one.

‘Your energy is valuable’

Daniel Nicewonger, 55, Pennsylvania, US

In May 2016, after he started struggling to take a full breath, Nicewonger was told he had colon cancer that had spread to his liver. The prognosis was two years.

It took this to clarify what’s really important. You get very good at saying, “No, I choose not to invest energy and time in this, because my energy and my time is just that much more valuable.” If I could have understood that at 30, I’d have moved through life in a totally different way. But that’s unrealistic. Wisdom is wasted on the young.

‘Don’t mess around. Be direct’

Angus Pratt, 65, British Columbia, Canada

A lump on Pratt’s chest in 2018 led to the discovery of breast and lung cancer. He was given a 5% chance of living to 2023.

I had my diagnosis in May, my wife was diagnosed with pancreatic cancer at the start of October, and by the middle of November she was dead. I had to ask myself the big question: am I leaving behind what I want to leave behind?

I’ve taken on writing assignments, helping scientists translate research into patient-friendly language. Recently I was asked to contribute a painting to an auction, and I was surprised people would pay for my art. One of my joys is a local poetry group that meets in the park. Sometimes we have an open mic. I guess I’m trying to say I’m a poet, too.

I’ve discovered self-confidence. I really don’t care what people think about me any more; it’s not important because I’m going to die. I don’t have time to mess around, so I’m going to be direct. That’s stood me in good stead.

‘I should have trusted myself more’

Henriette van den Broek, 63, Gelderland, the Netherlands

When Van den Brook was diagnosed with breast cancer in 2008, the disease had already spread to her lymph nodes. She was well for a number of years, but in 2020 she discovered that the cancer had spread to her stomach and was terminal.

Every day when I work as a nurse, it feels like a party for me. I realise how meaningful I can still be to other sick people. I enjoy the little things more, dare to have the difficult conversations.

It’s a pity I’m only finding that out now. I feel like I need to catch up on this in a hurry and get the most out of life. I’m discovering the things I’m good at, but I’d have liked to discover them sooner. I should have trusted myself a lot more and been less insecure. I only have the guts now.

‘Treat every smile like it’s your last’

Ricky Marques, 42, St Helier, Jersey

In summer 2022, Marques began to lose weight. In November, a CT scan led to a diagnosis of lung cancer. The disease, which has spread to his bones and lymph nodes, was so advanced that he was given a prognosis of weeks or months.

When I was younger I had a son, and when he was eight, he died in a car accident. My life collapsed and I thought, “How am I going to recover?” When I was diagnosed with terminal cancer I thought, “What else am I going to get? Didn’t I already have my share of bad luck? Don’t I deserve to live?”

The lesson I’ve learned is every time someone smiles at you – a little touch, a little gesture – look at it like it’s the last one because, guess what? Maybe it is.

 

The Guardian, UK

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