How does it feel to live with a death sentence for 7 months – then find it was a mistake
22:35 GMT, 20 August 2012
On his 50th birthday in July, post office manager Andy Goode went surfing in Cornwall with his wife Kate, 47, their daughter Rachel, 11, and a group of close friends.
‘The weather was glorious and all the people I cared about were close by,’ he says.
'I remember paddling out, looking up at the sky and telling myself how beautiful life was and how lucky I was to be there.’
'Everything I did, said and thought was coloured by the fact I was going to die,' said Andy Goode (pictured with wife Kate and daughter Rachel)
More than anyone, Andy Goode knows just how precious life is.
Just two years earlier, in May 2010, he was diagnosed with cancer of the pancreas and given just months to live.
‘The doctor’s exact words were: “You have to go home and prepare to die,” ’ says Andy, from Chatham, Kent.
‘When someone tells you that, your entire world shifts around you and in that instant everything changes for ever.
‘From that moment on, I stopped being Andy Goode, husband, father, friend, employee — and became Andy Goode, who has terminal cancer.
‘For the next seven months, my entire life focused on this death sentence.
'Everything I did, said and thought was coloured by the fact I was going to die — when I had so much more I wanted to do and a family I adored and who needed me.
‘I wrote letters to my loved ones, made a will and went through the indescribable agony of telling my daughter that she was going to lose her Daddy.’
And then, seven months after the diagnosis, Andy was told he was not, after all, about to die — and that he had a good chance of living a long and healthy life.
Yet this piece of news did not fill him with unbridled joy.
In fact, it left him feeling deeply unhappy.
‘I felt like I had been smacked in the face all over again,’ he says.
Experts say Andy’s reaction is a common one for patients pulled back from the brink — be it down to a medical miracle, spontaneous recovery or misdiagnosis.
In Andy’s case, it is still not entirely clear what saved his life.
His nightmare began in April 2010, when what he had thought was the pain of a pulled chest muscle got gradually more severe, to the point where he was taking painkillers constantly.
‘I saw my GP and the out-of-hours GP at least four times over the next fortnight,’ he says, but was told it was just a pulled muscle.
Seven months after the diagnosis, Andy was told he was not, after all, about to die – and that he had a good chance of living a long and healthy life
Then, a few days later, his wife, a nurse practitioner, noticed his eyes were yellow and insisted he see a GP again.
It was a bank holiday weekend and the out-of-hours GP said he needed an immediate scan.
‘We paid for it ourselves, and that
afternoon I was having an ultrasound.
'The radiologist seemed to take
hours, turning me back and forth on the table. I could see Kate’s face
becoming more and more worried.
as I sat up, he said he could see a large mass on my pancreas. I felt
as if I had been smacked in the face with a pole. I just ran out into
the car park and broke down.
'I looked around at the trees and the flowers, and I knew in my heart that soon all that would be taken away from me.’
out-of-hours GP took one look at the scans and took the decision to
give him the results straight away: Andy almost certainly had pancreatic
cancer, which would, inevitably, be terminal.
‘She was quite brutal about it,’ says Andy.
‘I asked if there could be another
reason for these results, and she said yes — but that was fatal, too.
All hope was extinguished there and then. Poor Kate was in bits.’
Around 8,000 people a year are diagnosed with pancreatic cancer, but only 140 will be alive after five years. Eighty per cent die within a year of diagnosis.
Pancreatic cancer has the worst survival rates of any common cancer. One major problem is that most early symptoms — such as abdominal pain and backache — are vague and are often misdiagnosed.
Eighty-five per cent of cases are diagnosed too late for the only curative option, a gruelling form of surgery known as the Whipple procedure.
In the days following, while Kate rang their closest friends and family to break the terrible news, Andy spent hours sitting in their garden trying to make sense of it all.
‘I was trying to sort out what I had to do in the time I had left. Who did I want to see, what places did I want to visit, how should I best provide for Kate and Rachel.
‘Thinking about Rachel growing up without me was really distressing.
‘I rang my boss and the only way I could think to tell him the news was to say he should start looking for another manager for the Clapham branch. What could he say’
A GP friend suggested the best place for pancreatic treatment was King’s College Hospital, and almost immediately Andy was undergoing a barrage of tests.
‘Right from the start, they said they felt there was still some investigating to do before they could definitely confirm my prognosis.
‘But equally, I was left in no doubt that things were looking very bad for me.
'My cancer markers (substances that can be found in the blood or urine when the disease is present) were sky high.’
A few weeks later, Andy and Kate tried to explain to their daughter that her Daddy was going to die.
‘Rachel and I are very close,’ says Andy.
‘We have the same dry sense of humour and always find something funny in the worst of situations.
‘But not this time. I asked her if she knew what cancer was, and she asked if I was going to die.
'I nodded, and said I was going to live with Grandad. I said sorry, and then all three of us clung to each other and cried.
‘I told her I would do my best not to die, but my best might not be good enough. It was the most traumatic thing I’ve ever experienced.
‘It was like living in a nightmare. I did a lot of crying and ranting about why me.
'Kate was brilliant — calm and supportive — but often she had to leave the house because she didn’t want to distress me with her tears.
‘There was no walking on eggshells. We talked a lot about me dying.
'As Kate is a nurse, I’d ask her if it would be painful, how quick, what drugs they would give me, would I be conscious. I was torturing myself, but I needed to know everything.’
Within a few weeks Andy was seriously jaundiced: his pancreas was pressing on the bile duct, causing bile to leak into the blood, causing yellow skin and itching.
‘I could cope with being bright yellow and losing weight — I even made jokes about changing my name to Homer Simpson — but the itching was horrendous.
'I was virtually flaying myself alive,’ he says.
‘I was on sick leave and managed only a few hours’ sleep a day.
'Not surprisingly, I was irritable and horrible to be with. I couldn’t even bear Rachel cuddling me.’
'Everyone was delighted, except me. I had gone through seven months of thinking I was dying – and now that I was reprieved, I couldn't get my head around it,' said Andy
Many patients with pancreatic cancer are given only palliative chemotherapy, but doctors suggested surgery.
However, Andy’s jaundice meant this carried a high risk of infection, so they decided to fit a stent (plastic tube) in an attempt to drain the bile first.
Crucially, being unable to carry out surgery also meant they were unable to take a biopsy.
‘The only definitive way of confirming cancer is to remove a small part of the mass and send it to a pathology lab,’ says Professor Peter Johnson, chief clinician at Cancer Research UK.
‘If you have a cancer in an area that is difficult to reach, such as the pancreas, or dangerous to operate on, such as certain parts of the brain, you might not be able to carry out these definite tests.
‘Scans are becoming more sophisticated, but until you actually look down a microscope you can’t know for sure what you are dealing with.’
Meanwhile, Andy was putting his affairs in order.
‘I made a will and wrote letters to Kate and Rachel — apologising for leaving them and telling them to be happy.
‘I also made sure the insurance was all sorted, so that Kate would be financially OK, and I told her that if she found someone else, as long as he made her happy and was good to Rachel, that was fine with me — and I meant it.
‘You always think you’d have a wish list of things you wanted to do before you die, but the truth was that I was just too exhausted and sick to do anything but stay at home.
‘I’d stopped ranting about the unfairness of it all and come to some kind of acceptance.
'Perhaps there was a reason for it: maybe Rachel would become a brilliant doctor and find a cure for cancer because of what happened to her father.
‘I have never been religious, but I had a few chats with God, asking him to look after my family. Strangely, I wasn’t scared any more.’
But just as Andy had come to terms with his imminent death, something miraculous happened.
‘In November, I went into hospital to have the stent removed and they managed to get a camera down to the pancreas.
‘At the next consultation, in December, the senior registrar told us he could safely say the mass wasn’t cancer after all.
‘He said I had a massive inflammation of the pancreas and a narrowing in my bile duct.
'They would put me on a course of enzymes to help with the processing of bile, which I will take for the rest of my life.
‘I looked at his delighted face and at Kate, who was beaming from ear to ear, and I knew they wanted me to be happy, too — but I wasn’t.
'In fact, I was anything but happy. I felt as if I’d been wearing a hood over my head for seven months — and now that it was taken off I couldn’t bear the sunshine.
‘We told Rachel immediately and she burst into tears of joy. She went around telling everyone that her Daddy wasn’t going to die any more.’
Over the next few weeks, a steady stream of visitors — family, friends and work colleagues — came to congratulate Andy and Kate.
‘Everyone was delighted, except me,’ says Andy.
‘I had gone through seven months of thinking I was dying — and now that I was reprieved, I couldn’t get my head around it.’
It’s not clear if the tumour had spontaneously regressed, or had never been cancer, but the good news seemed only to distress Andy.
‘I suffered explosive bouts of bad temper. I began to shout at Kate that I wished I had died — and soon I was saying it several times a day.
‘I hated hurting her and myself, and I couldn’t understand why I wasn’t happy.
‘Kate was calm about it. She told me later that she was expecting some sort of emotional reaction.’
In fact, according Craig Jackson, professor of psychology at Birmingham City University, Andy’s reaction was entirely predictable.
‘People who are told they are terminal usually cope in one of two ways,’ he says.
‘They get angry and stay angry until the end, or they go through the various stages of grieving — starting with anger, resentment, grief and then acceptance.
‘That’s a lot of very painful work to do, and if you’re then told all that work was for nothing, it’s normal to feel angry and bitter.
‘In addition, even though they are blameless, there may be an element of embarrassment or guilt for putting everyone they love through this for nothing.
‘Interestingly, in order to make their loss more bearable, many terminal patients convince themselves successfully that they don’t really love their wife or children, and that their life was pretty awful.
'In other words, death won’t be such a huge loss.
‘Now, not only are those coping strategies no longer needed, but they need reversing. There’s also the guilt about developing them in the first place.
‘To make everything worse, while the survivor feels dreadful, everyone is jumping up and down for joy and expecting him to be the same.
‘All in all, a reprieve from a death sentence is absolutely a recipe for emotional problems.’
His GP had warned him about the emotional fall-out, but Andy admits he brushed it aside.
‘I think I thought I would be able to cope by myself, when, of course, I wasn’t coping at all.
‘Then one day Rachel heard me ranting about how I wished I’d died and the distraught look on her face made me realise this had to stop. Having survived death, I was in danger of destroying my family.’
Andy gave himself a stern talking to and began to look on the positive side.
‘Every time a doctor looked at my notes, they would mutter words such as “remarkable” and “incredible”, and I began to understand just how lucky I’d been.’
A year after his second diagnosis, Andy is in good health, seeing his consultant only for a check-up every six months.
He recently cycled 320 miles for the charity Pancreatic Cancer Research Fund.
‘It was a terrible experience, but I have learned so much about what is important and meaningful in life,’ he says.
‘Today, we rarely let a weekend go by without going to a show or visiting someone close to us. Life’s about making happy memories.
‘We were already a close, affectionate family, but now we are probably even more so.
'We hug a lot and tell each other we love each other, and we don’t get hung up on little, unimportant issues.’
To help Andy raise money for research into pancreatic cancer, go to virginmoneygiving.com/AndyGoode