So, I had a cancerous tumour, but there was a silver lining. The specialist explained that they believed the tumour to be a Solid Pseudopapillary Pancreatic Tumour (SPPT). They are extremely rare, but also extremely slow growing and have a very high recovery rate once removed in surgery. It was really good bad news. When I broke the news to my friends, one of them did some further research of articles about the type of tumour. He works in cancer research so was well placed to crunch the jargon. The studies he found seemed to reinforce the positive points about the tumour type that the specialist had informed us of. He also pointed out that the tumour was predominantly found in women in their 30s, a fact that they certainly enjoyed.
Anna had a lot of questions about the diagnosis that I couldn’t answer, and the more we spoke, the less I felt I knew. She called the specialist the next day to clarify a few things. The main question pertained to how confident the doctors were that the diagnosis was correct. The specialist assured us that they would only name the tumour if they had a very high confidence interval. It was all down to the endoscopy. During that procedure they would take a biopsy of the tumour. That sample would then be tested, and we would conclusively know the tumour type.
It still felt confusing what news I was actually breaking to people at this point. I had managed to get imposter syndrome over my cancer diagnosis. Telling people that I had cancer felt insincere; cancer is dangerous and spreads easily, and what I had didn’t sound like those things. But it was also called a cancer, wasn’t it? Or was it a cancerous tumour? Was that cancer? And what about the cyst, was that also the tumour? Did I ask the specialist these questions? Oh whatever, the Endoscopy was in 3 days, and I was terrified of it. Just needed to focus on that. My mind was conflicted and there were too many things going on.
Finally, the day of the endoscopy came. It was E-Day, and I was very nervous. The idea of a camera being pushed down my throat whilst I was on sedatives alone had haunted me from the moment that I learnt what the procedure was. Further to this, I knew that they would be taking biopsies with a needle, as well as ‘draining fluid’ from the cyst. “These better be some powerful sedatives,” I thought to myself.
I arrived at the endoscopy department and waved goodbye to my mum and Anna. They were my entourage throughout my hospital visits and continue to be so to this day. After being signed in, I was taken into a small ward with individual beds and curtain rails around them. None of the curtains were being used, and everyone was exchanging the odd shifty glance. There wasn’t a smile in sight, but why would there be? We were all about to be assaulted by the men in coats, apparently for our own good. Stockholm syndrome was rife as we nodded at the doctor’s words and thanked them for their help.
The nurse came to put my cannula in. At this point, cannulas were becoming a routine pain for me. It didn’t make it any more fun to have them inserted, but I had stopped getting nervous about them. This time, they wanted to insert the cannula just below my wrist and to the right, just where a bone is. “It’ll hold well there during the procedure because the skin is tight,” the nurse confidently told me. I shrugged my shoulders and smiled. They were about to stab my organs with a device via my throat whilst I was awake… I couldn’t care less where the stupid cannula was, it was bottom of my priority list that day. He then pushed the cannula in, and I felt my soul throw up inside my body. The needle had scraped against the bone as it had been inserted into my vein, and I had never felt so repulsed in my entire life. “That wasn’t so bad, was it?” he said, as he attached the tape to hold it in place. I vacantly smiled as I tried to remember if I had accidentally smashed any mirrors recently. Where was this bad luck coming from? Anna always told me not to walk on 3 grids, and my response was to gleefully tic-tac-toe across them like a toddler whilst holding eye contact with her. Maybe I was paying for it.
After 45 minutes I was collected from the holding pen and taken to the procedure room. To my utter dismay, the original private specialist I had seen who had told me I was constipated just over a year ago was one of the 2 doctors present in the room, alongside a few nurses. I did not have time to think about it. One nurse had a suction tube which she said would be used to remove excess liquid from the mouth during the procedure. The nurse lay me on my side and various things were placed around me. They quickly injected me with the sedatives. I was asked to bite down on a silicone device that was then strapped to my face like a gag. It allowed the wire that the camera was on to enter your mouth and throat without you resisting it with your teeth. Where else would such a device exist? That’s right – Guantanamo Bay! Alas, we were away.
My memory of the procedure is hazy, especially the beginning of it. The sedatives have an impact on your ability to recall the memories, and they likely do a lot to stop various muscles tensing and resisting the advances of the tube during the procedure. In spite of this, I do have some memories that are traumatic to say the least.
I remember trying to throw up bile but it being stuck in my throat because the tube was blocking it. It was like being waterboarded with your own sick. I remember a black liquid coming out of my mouth at one point, presumedly from my stomach. I was trying to say “I need to stop” during a particularly painful moment but the nurse couldn’t understand me; I think it was when they were draining a large amount of fluid from the cyst. I’m sure I overheard the 2 doctors discussing cricket at this point. I guess it must become a trivial sight if you do it all day every day, and this is essentially their office. Nothing wrong with talking about cricket at the office, right? I also heard them say something about the situation being more complex than they thought, and that they needed to take the findings back to the group.
At the end of the procedure, I sat up on the bed and the private specialist spoke to me. In the preparation notes for the procedure, I had been told that the doctors would inform me what they saw and give their initial opinion on things. Unfortunately, that didn’t seem to happen for me. “Can you give me a history of the problem?” he asked. He didn’t remember me, but why would he? He had barely looked at me in any of our consultations. I thought that my name might have jolted his memory if he was in the cross-functional team dealing with my case, but apparently not. I informed him that the issue had started over a year ago and that I had seen him about it first. He looked baffled, got his phone out, searched his emails for my name and found the details. I filled him in on the rest of the timeline to the present day.
“Well, today we have managed to take a few successful biopsies, but we could not easily identify the tumour on the camera. We also drained all of this liquid from the cyst,” he held up 2 tubes of a thick black liquid. It was like a scene from Alien. I felt sick. “Do you think what you saw supported the theory that it’s an SPPT tumour?” I asked. “I’m not sure, maybe,” he responded, dismissive as ever.
The nurses wheeled me to the recovery room where I had to be observed for about an hour before being picked up by my entourage. It was over, but it took me a few days to fully calm down from the experience. Everything about it rocked me. I wondered if the sedatives were actually really effective and that I had imagined that the private specialist was one of the people in the room. Maybe the experience I remembered was constructed from a nightmare? But no, I saw the endoscopy notes which had been sent to my GP and reviewed the sign-off names. The story’s main villain had written himself back in and put me through an endoscopy. Touché, private specialist, that is definitely 1 – nil to you.
I went home to my parent’s house that weekend to relax. My sister Josie had driven my mum and I back the day after the procedure on the Thursday. I had warned the team at King’s that I wanted to go home to try and relax for a few days, and they had approved for me to do so. The next meeting with them was the following Wednesday, so we had time.
On Monday, my sister and mum attended a funeral in Alsager, where my parents live and where I grew up. They were due to get home at about 14:00. We were going to head straight back to London once they were home. At about 13:45 my phone started buzzing. I looked at who was calling – No Caller ID – the hospital.
It was the beds department at King’s College London. “Hello Daniel. I’ve been told to assign you a bed on an emergency basis for your procedure tomorrow,” the gentleman said. He sounded very nice, but the words he was saying didn’t and I had no idea what he was talking about.
“I’m sorry, emergency procedure? I didn’t know I had a procedure tomorrow. No one has told me. What’s going on?” I was panicking. This wasn’t what I needed. I was in Alsager in Cheshire, about a 4-hour drive from London, probably more at that time as rush hour approached. “Oh, I’m so sorry, Daniel. Your specialist should have called you. I’ll speak to her again and ask her to contact you shortly. Don’t panic.” I didn’t heed his advice. It was back to pacing the room.
My phone rang again after only a few minutes. It was my specialist team’s representative. She apologised that the beds team had got to me before she had and explained that I needed to go into hospital as quickly as possible that day. King’s College London had a bed reserved for me and I was due to have an emergency procedure the next day. “Has my diagnosis changed?” I was struggling to string the words together. I’d never been admitted to hospital before and had never had a procedure which required me to be under general anaesthetic. There were too many things to process, and I wasn’t even in London.
“Yes, your diagnosis has changed. We can’t talk about it over the phone. How quickly can you get into hospital?” Her calm words were scraping down my brain like fingernails on a chalk board. I felt like I was going to pass out; for the first time in my life, I really felt like I was having a panic attack. “I can’t, I’m still at my parent’s house. I need to set off right away and I still might not make it until 19:00. I can’t cope with this. Why can’t you tell me over the phone?” I was pleading with her; the tears were coming faster than ever. It must have been hard for her. She always gave off such a positive and well-meaning aura. I knew this part of the job was hard for them too.
“Just get here as quickly as you can. I will be here until 19:00. Come straight to the beds department and ask for me and we’ll talk to you then. Try not to panic, it won’t change anything”. The last words echoed out in my head like a gunshot in an alley. I had to get to London. I had to try not to panic. I was already miserably failing at the second one, better work on the first. My mum and Josie walked into the house.
8 thoughts on “The Road to Diagnosis: Part 3”
Dan, this is a gut wrenching account of such a terrible experience. It moved me to tears. I hope the writing of it has helped you process in some small way,the trauma you went through.
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Oh Dan…. how utterly and completely terrifying for you, Anna and your family.
Thinking of you
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Thanks Kath. It was an awful time for us. This one was hard to write. It was a very traumatic time. Thank you x
I couldn’t read and not leave a message, I have been consciously checking your blog everyday to get the latest update.
I can’t begin to imagine what you’re going through but the strength that you’re showing is so inspirational. Your selflessly turning such an awful experience into something so positive as this blog.
Sending lots of love to you and your family. X
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Hey Charl. Very nice to hear from you and thank you for your incredibly kind words! I’m glad you’re enjoying the blog, if ‘enjoying’ is the right word for it :). Hope you and your family are well x
I guess enjoying is the right choice of words just in very sorry circumstances. My heart hurts for you all but you’re such a trooper.
We’re all good thank you, welcomed my daughter into the world in October, little Mabel 🙂
Anyway, I’ll check in again over the next few days. Have a lovely Christmas x
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Hi Dan, this is so beautifully written and as others have said it is heart wrenching stuff. The Newtons are thinking about you every day and we are sending you, your family and Anna all our love and virtual hugs xx
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Thanks for being so open in these insightful blog posts Dan; like everyone else, really hoping for a good response to treatment that can see you back up and running in no time. All the best!
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