Below is my diagnosis report. My GP emailed it to me three days after the phone call when he told me I had cancer. It probably doesn’t make a lot of sense unless you understand the medical terms. The most important part is near the bottom of the page where it says “The features are in keeping with mantle cell lymphoma with a high Ki-67 proliferation index.” Not good.

I was emailed that on October 13th, 2022. But let me go back three days earlier to the 10th when I got the phone call.

I already knew something was wrong with my body. I’d been ill, realistically, for probably about a year before I got the phone call. But it had fluctuated and for quite a long time I shrugged it off and got on with life. It wasn’t until I started losing weight dramatically over a few months that my wife, Danielle, and myself knew that something had to be done. But I’ll come back to the lead up to this in another post because right now I want to describe what it feels like when you get that phone call.

I’d been prodded and poked. Blood tests, ct scan, chest x-ray, colonoscopy and a gastroscopy. Although there were concerns, the initial report didn’t mention cancer.

Then this…

My phone rings.

“Hello, is that Jonathan Gauntlett?”

“Yes it is.” I reply

“This is Dr Smith from such & such medical centre.”

Obviously these are not real names but people deserve their privacy, and he’s not a bad bloke. In fact I get on with him quite well.

“Oh, hello. How are you?” I ask.

“I’m well, but there is something I have to tell you. I don’t like giving this news and there is no easy way for me to say this. But here it is. I’m sorry to say you have cancer. There has been a second opinion on the initial report and they believe you have mantle cell lymphoma. It’s a type of blood cancer and is classed as a non-Hodgkin’s lymphoma.”

My brain explodes, my heart races and my stomach drops through the floor. I feel sick but I hold it together. I need to know what happens next.

“So what happens now?” I ask.

“You’ll be referred to a haematologist where they will explain in more detail as to where you proceed to now. I’ll refer you and you’ll receive a letter and or phone call from them with an appointment date. At this stage you’ll be referred to a private haematologist.”

“Won’t that cost a lot of money?” I interrupt.

“Not initially as the consults are covered by medicare. You’ll be seen a lot quicker and it’s very important that this is looked at as soon as possible. Do you have any questions?”

Yes, about ten million. But I don’t say that. And by the way I’ll explain how I ended up in the private system instead of the public, and then how I went back to the public. Which I much prefer, but shh, don’t tell my first haematologist that. I like my public one much better, but I won’t go into that right now.

Back to my, on the edge of a breakdown, conversation with my GP.

“Is it curable?” The obvious question.

“Yes, it’s treatable if we get on to it right now.”

“That’s good, as long as it’s treatable then I can cope.”

What I didn’t realise then but what I know now is that there’s a big difference between curable and treatable in the world of cancer diagnosis. I’ve discovered that medical professionals choose their terminology carefully and that you have to question them as to what it means in plain English. The subtle differences can be the difference between will I live, or have death postponed for awhile.

“Ok Jonathan, is there anything else?”

“Can I have the report emailed to me?” I wanted to see it in black and white. To actually hold my potential death certificate in my hands. It sounds morbid and maybe not everyone does this, but I wanted every piece of information the medical world had on me in my hands too.

“Yes, I’ll get reception to email it to you. I’ll leave you to process everything now and tell who you need to tell. If you need to ask me anything in the future then just get in touch. Good luck Jonathan.”

“Goodbye, and thank you.” Why was I saying thank you? Yeah, thank you for telling me I’m going to die. Thank you for fucking up my life. Thank you for… well what’s the point in going on. My head had gone into over drive. The weirdest thing was, the whole time, I was thinking, stop calling me Jonathan and call me Jon. I only ever got called Jonathan when I was in trouble with my parents. Guess I was in big trouble now though.

The phone hung up and my world fell apart. It literally cracked, swallowed me up and fell apart all around me.

If you’ve ever seen the movie Trainspotting you’ll understand what I describe next. The phone hung up, my world fell apart and I fell back into the sofa as though I was already dead. It was like the floor scene in Trainspotting, where Mark Renton shoots up heroin and sees himself sinking into the floor as he overdoses. That’s what happened to me. I felt like I died on the spot for a few minutes of my life. I don’t know where I went, but I just checked out.

Then, just like the movie, my, hypothetical, narcan injection kicked in and I came back to life sobbing my heart out. Just laying on my back crying.

I’m sure everyone who has had a cancer diagnosis must go through something like this, in their own way, on first hearing the news. It rips your world apart, because the first thing the mind goes to is death sentence. I’ve got cancer, I’m going to die. That thought process came in fairly quickly to the proceedings.

Then my head went ballistic. I don’t want to die, I’m too young. What about Danielle? What about Kael? I can’t leave my daughter, she’s only fifteen. I want to see my family in England again. And it went on and on and on.

Then panic set in. I need to tell someone. I need to tell Danielle.

Danielle was at work in our shop but I rang her anyway. But do you know what? I can’t remember what I said to her. I was a mess. I blabbered. I can’t even remember if I told her I had cancer. I probably did, but how do you tell someone when they’re at work? But you have to tell someone. And that’s just the start of the journey of telling everyone. Over and over and over.

The rest of that day is a blur. It’s gone from my mind other than the odd memory. I remember crying a lot. And I mean a lot for me. Staring into space, blanking out. Curling up into a little ball and being held by Danielle. Repeating over and over again that I don’t want to die.

Telling our daughter Kael. Watching her face crumble. Watching her world crumble. That was hard. That was so hard. My heart broke when we had to do that. Holding her and Danielle. Being held by both of them. All of us crying.

Then sleep. Beautiful, blessed sleep. At some point I must have gone to bed, but I don’t remember.

That was the day. The day my life changed. The day Danielle and Kael’s lives changed. Are our lives changed forever? Probably. Because even if I survive this. No, correction, when I survive this we will have learnt so much. I don’t think it’s possible to go through this without learning something about yourself, life, the universe and everything. It’s too big a moment in time to not learn anything.

So here I am. I survived diagnosis day but I had more to come. More tests, one of which was highly unpleasant. Google bone biopsy if you’re feeling brave. I’ll tell you about it down the track. But I absolutely do not want to have another one.

I also had to wait until after these tests to find out what stage my cancer was at. It’s not fun sitting in a waiting room awaiting what could be a life sentence. Still, I’m getting ahead of myself. For now I just wanted to let you know what it was like to get that diagnosis. I tried to describe it but I probably haven’t made it sound as bad as it was. These are just words on a computer screen but I can still feel the emotions from that day as I write this.

I’m in a better head space now and energetically I’ve moved forwards. However, if I dip my toe back into that day I can touch into those emotions. Now I’ve written this I can leave them behind again until the next visit of that moment. But I think I’ll try not to do that for awhile.

If you’ve just received a diagnosis I feel for you and I send you all my love and encouragement. It’s so hard to hear those words, so very hard. For you and your family and friends. But mostly for you as you are the one with the cancer, and it sucks. You can, though, move on from that day emotionally. You can get your emotional, mental and spiritual strength back. You can beat this horrible disease. I’m with you all the way. Let’s get our health back, because we deserve to!

Thank you for reading this and taking the ride. It helps to write about this and if it gives you an insight into how a diagnosis feels for someone then I’ve achieved something. Thank you for your understanding.

I’m going to put the Trainspotting scene at the end of this if you want to have a watch. It sums up that sinking feeling I had and just disappearing from myself, life, everything. Just laying on the sofa not existing for a few minutes. Just gone, no drugs needed.

Stay safe people and enjoy life. It’s there to be lived.

Love, Jon