The club that no-one wants to join

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Kerry and boyfriend Matt 2It was April 2013. I don’t remember the exact day. But that was the day my life changed. I was one of 5 people sat in a consultation room of St Richards Hospital, Chichester, where less than 60 seconds prior my girlfriend Kerry had just been diagnosed with cancer. Pancreatic Neuroendocrine to be precise, but at that moment the minutiae hardly mattered.  She had cancer. That was where it stopped for me.

The other people present in the room with me were Kerry, her mum and dad and the consultant, Mr Bowyer. He riffed a list of why’s and where-fore’s designed to cushion the blow, which though I was listening to them, my sub-conscious barely seemed to absorb.

Apparently Pancreatic Neuroendocrine (or PNET’s as medical bods refer to it) is a rare form of pancreatic cancer. It is particularly rare for Kerry’s age, she’s 24. Reputedly only around 2% of all people in the world diagnosed with this type of cancer are under 40. The cancer is very aggressive, it’s at Stage IV and we’re told it’s non-curable. Well, you know what?   I am not going to let these statistics dictate how we see the outcome of Kerry’s battle with this illness.  Every case is different, of course it is. This is generally an old-person cancer, yeah yeah I know, so surely the fact that Kerry is young and (otherwise) healthy is on our side. I suppose I should feel lucky that she has the exuberance of youth on her side as well as a fighting spirit. I suppose I should feel lucky. But I don’t. All I could think about was the fact that someone I love had just been diagnosed with one of the deadliest diseases in the modern world.

A quick check on Google – I’m a glutton for punishment – tells me that in 2007 alone cancer killed 7.9 million human beings worldwide. To put that in perspective, that’s more people than were killed by the holocaust, cholera and Jack Bauer (the field agent who fights terrorism in the programme 24) combined. That’s a terrifying statistic for anyone. If cancer was an assassin for hire it would doubtless be the best in the world. The silent, ruthless killer.

It’s hard to describe exactly how I felt/feel. It’s different for everyone. It’s always different. My entire life was stripped away in the blink of an eye. Things that had previously seemed important to me – what movies are out this month? Did I set Luis Suarez as my captain on fantasy football? – suddenly slipped into staggering insignificance. All that mattered now was her.

I was too broken to cry, too crushed to be angry, too distraught to speak, too numb to feel, too naked to hide, too concerned to panic, too scared to be positive, too sceptical to hope and too positive to doubt. I felt all these things at once. You never think it’ll happen to you, even when it does. I wanted to tear my hair out, trash the room, punch the consultant, renounce God and all his works, scream, cry, yell, hide. I didn’t know what I wanted to do. Most of all I didn’t know if I could do this.

I would never and will never presume to know how difficult it was for Kerry. She’s the strongest person I know, the strongest I’ve ever known. Much stronger than me. And she took it better than any of us. ‘I’m going to beat this,’ she said. And that was that. Game face on. From then on I had to be there for her. She had resolved to beat this illness and so I had to do the same, despite my fears, of which there were many.

Because I am not Kerry and I do not have an open-all-hours invite to her thoughts, I cannot tell you what she thought or felt. As such, this blog will document MY own personal journey through this. Not that I’m trying to imply that I have/had the roughest ride here, not by a long shot. But I am me. And I can only tell you how ‘me’ has been affected by this. I can’t speak for anyone else, nor would I wish to. The thoughts and feelings I detail here will be my own. I don’t wish to sound like a self-aggrandising person who thinks the weight of the world is on his shoulders, but I can only give you my perspective. If you can’t deal with that then feel free to stop reading.

The thing is, not to sound like a moaning, self-centred idiot, but no-one ever tells you how difficult it is for those close to a sufferer. Don’t get me wrong, I am in no way attempting to postulate that my suffering could even reach the same vicinity as Kerry’s. Lord knows it never could. And I could never imagine what she must have been going through, despite the front she showed. It must have been hell for her. The thing is though, there are all these books and articles and movies about battling through cancer, which I think are great, don’t get me wrong. But there is so little literature about how to deal with life as the “care giver”. Perhaps that’s because it’s different for everyone. But let me tell you, life on the periphery is unimaginably horrific. Being the loved one of a cancer patient is truly one of the worst things you will ever go through in your life, save perhaps being a sufferer yourself. And anyone who says otherwise has never experienced it. Or is just completely ignorant.

I can tell you the layout of every A&E, ICU, treatment centre and chemotherapy ward from here to Scafell Pike; I can tell you the name and effect of every pain killing agent in the medical world; I can tell you the exact cost of a cup of coffee in a hotel restaurant; I can tell you the difference between an EKG, a CT scan, chemotherapy, radiotherapy, stem cell treatment and blood transfusions; I can tell you the prognosis and treatment plans for half a dozen form of cancer. But I can’t tell you how to do this. And that’s because I don’t know. Neither does Kerry. Nor her parents. Nor our friends. We are all now members of the club that no-one wants to join…


  1. My mom was recently diagnosed with stage 3, and reading your post was like looking at the pages of my own journal, particularly the final sentence. I wrote those exact words. Here at the main MD Anderson, they are trying to put more groups together for caregivers bc research indicates that our health declines rapidly due to the stress, fear, anxiety. It’s not self-focused. It’s real. My friend who Is a stage 4 survivor and Is now a caregiver says that she wasn’t prepared for how caregiving felt.

    It’s a world of unknowns. You want to plan, to make a plan, to fix–but you can’t. Kudos to you for speaking about this. We caregivers need to know we aren’t alone, too. Just to add to your list of resources, Can Care has survivor and caregiver mentors. Great resource. Blessings to all of you.

  2. i could have wrote this myself . same feelings exactly when i learned of my man’s pancreatic cancer, we have come through a troublesome 1 year and 2 months and hospital visits but he never gave up and is still on the go every day i have never heard him complain not even once even though it has spread into his liver . he is not sure of what to expect as he never asked . so i have not said to him and i think that is the way he wants it at the minute

  3. Matthew, I would like to thank you for sharing your thoughts and feelings.

    You have a gift with words and many of us who are in this dreadful club may not be able to articulate as well but will recognise your feelings and experiences as we are walking a similar journey.

    From my perspective as the primary care giver it is an honour and a privilege to care for my wife . We have only met one pancreatic cancer patient but many cancer patients , and we have met so many wonderful human beings , who in the face of such adversity, battle on with such dignity that it is humbling to watch. From where I stand they are all real heroes.

    You and Kerry are very fortunate to have each other .
    Stay strong Matthew you will never be more needed, know that you are not alone and you are both in our thoughts and prayers

    Good Luck to you both .

  4. My husband died from a malignant melanoma some years ago when we were a happy family with two boys aged 3and 4 yrs. we were living away from home, family and friends due to my husbands work. He had been back and to presenting this changing mole to the doctor for two years being told there was nothing to worry about. By the time it was diagnosed it had spread through his body. I was advised by the specialist on the doorstep as he was leaving our home that he had aprox 3 months to live. Our boys were playing happily in the bath, my husband was in bed not knowing what was the matter with him I closed the door went upstairs and told my husband the extreme pain he had in his back was the result of a slipped disk, I never told him he had cancer I didn’t want him to know I loved him so much I needed to protect him. It was the hardest thing and with hindsight I would have done it differently for many reasons. The journey toward the death of my beloved husband the loss of a father for my young sons was almost too much to bare, I felt like a zombie for much of the time, outwardly I must have seemed to be coping , the boys were my strength and stay , they needed me to be strong and although for months It seemed like I was only an onlooker in life around me , as if there was a play going on that I wasn’t part of , with the help of a little book from the church on loss and a loving mother we began to take small steps out of the depths of heartache. My heart goes out to you and Kerry. God bless you both. Love Pauline. Xxx

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