The Road to Diagnosis: Part 2

My response to the news was complex. I started to cry almost instantly but not for negative reasons. It was the first time that a medical professional had acknowledged that there was something wrong with me. The primary emotion I felt was relief. My girlfriend Anna immediately started crying as I broke the news over the phone. I called my mum and asked her to speak to Anna. For anyone who hasn’t had the pleasure of meeting my mum, she is the single most loving and caring person on this planet. There are 6 children in my family. Most people’s response upon hearing this is, “How did your mum cope?”. The answer? By being an actual, real-life angel. She has told me multiple times that she would take the cancer in a heartbeat if she could; something which is utterly beautiful and heart-wrenching in equal measures.

The drama of same-night surgery was short-lived. A specialist doctor inspected me and authorised me to go home for the night, requesting I return to the Ambulatory Care Unit of Lewisham Hospital in the morning.

I spent most of the week in Lewisham Hospital, attending various scans and having approximately 4 billion blood tests. I made it obvious early on that I was not a fan of blood tests, something which quickly became the joke of the ward. On one particularly blood-test-heavy day, the nurse popped her head around the curtain and simply said, “I’m so sorry”, with an insincere smirk on her face. This was the fourth time that day that she was sniffing around my veins, and I was starting to suspect that she was a vampire. I imagine the Ambulatory Care nurses are still sat around in the break room drinking my blood from pint glasses and laughing about that time they made me do 4 blood tests in a single day.

The first warning sign came during the ultrasound. Most people associate ultrasounds with babies, and likely have a positive reaction when a doctor hones in on a single spot around the stomach, and says to himself, “Well there’s something going on there”. When you are a 28-year-old male however, this sets off some alarm bells in your head. The situation worsened. He called to another doctor and said he needed his input. Both doctors then stood around the monitor whilst he massaged a spot on my upper abdomen. “Does this hurt?” he asked. “Yes, it still hurts,” I replied, starting to think he gets a kick out of this kind of thing. Somewhere during the scan, I hear the word ‘cyst’ uttered between them. This word would plague my life for the next month and a half.

By the end of the week, I had done an MRI and an ultrasound. We had been informed that there was a cyst on my pancreas, but the doctors were not sure why it had formed or how. The case was now being passed to a multi-discipline group of professionals, and I was being referred to King’s College London for further diagnosis. 5 days passed and I had heard nothing. I called the reception of the Pancreatic Care Unit at King’s College London and explained the situation. The receptionist checked their records and found no mention of a referral. Obviously, this wasn’t the news I wanted. I called the Ambulatory Care Unit at Lewisham and asked the nurse to chase it up with the doctor. The next day I received several phone calls from King’s College organising various scans and meetings with specialists. Now, it may be down to blind luck that this occurred the day after I chased it, but there is a pessimistic side of me that suspects otherwise. The nurses at the Ambulatory Care Unit were a reliable and dedicated group of people though, and I knew I could count on them to kick the doctors into shape.

Two more scans were planned at King’s College London: a CT scan and a PET scan. A procedure called an endoscopy was also arranged for the 25th of November. This frustrated me to no end as the date I received this appointment was October 20th, so it was over a month away. I tried to temper my reaction though and reminded myself that I was not a medical professional and that they must prioritise things as they see fit. Maybe it was even good news that they saw me as such a low priority as that must mean the issue is trivial. That theory didn’t last long.

The CT scan was standard and non-descript, other than the nurse’s response to me saying that I had an endoscopy planned. “Oh god I had one of those and it was the worst thing ever. No matter how bad you think it’s going to be, it’ll be 100 times worse”. I didn’t expect this to come out of a nurse’s mouth, but I felt weirdly grateful at the time for her being so honest. I wondered what other hobbies she might partake in though seeing as she clearly revelled in the morbid. She probably winds down from work by writing hate comments on puppy videos or something.

This is not so relevant to the diagnosis itself, but it is too funny not to mention in the timeline.

It was around this point that Anna and I woke up one day in our bedroom as normal, only for Anna to attempt to leave the room and find the door handle turned 360 without doing anything. “WE’RE LOCKED IN!” She immediately sounded distressed.

We were locked in our own bedroom of our own flat. I assume we aren’t the first ones to ever experience this situation, but it really makes you feel like you’re the only person that something this ridiculous could ever happen to. I felt an unparalleled amount of moronic impotence that I will probably struggle to feel again.

After a few minutes of minor (me) to severe (Anna) panic, I called my dad to see if he had any suggestions. He’s a very practical guy so I knew I could rely on him. Unfortunately, there were no keys to the flat in our bedroom, we had no tools, the door opened inwards making kicking it in difficult/impossible and none of our neighbours or friends in London had spare keys to the flat. My dad kept the suggestions coming and we kept cutting them down.

It was Anna who found a large bike lock under the bed that she hadn’t used in months, and suggested using it to bash a hole in the door. Now, this is where things got even more stupid… Instead of knocking the lock out straight away like rational people, we may have started trying to make a hole big enough for Anna to climb through… It was a stressful situation, please do not judge us. We probably spent 25 minutes hammering the middle of the door with the bike lock, with Anna footing a lot of the work due to the amount of pancreatic pain I had at this point. Eventually we realised what we were attempting to do was far more effort than just knocking the lock out, and about 3 minutes later we were out.

Anyway, back to the serious stuff.

It was during the PET scan that I started to sense that something more was going on beyond a harmless cyst. Before getting into the details, please remember that I am not a medical professional in any way, and some of the specifics of how these scans work may be incredibly inaccurate. A PET scan is essentially an MRI, but a radioactive substance is injected into your bloodstream before the scan takes place. It then travels around your body via your blood and clings to cells that have a high protein value, which is a characteristic of cancer cells. I found this information out from the doctor when he asked, “Any questions?” after injecting me with a fortified iron syringe with large toxic symbols all over it. “What actually is this scan?” I replied, wide eyed and bushy tailed. He explained the above, then told me that I would be left for an hour in the room with the lights off, and that I needed to try and sleep. I believe this is to keep your blood pressure as low as possible, as this ensures that the radioactive substance adequately clings to any cancerous cells in your body.

That was the longest hour of my life, and I definitely didn’t sleep. It dawned on me that this was quite a serious test, and it was the first cancer-specific test that I was having. I thought about my family and how much I loved them, and about how lucky I was to have met Anna in the previous year. Everything positive had a sombre feel to it. The more you have to love, the more you have to lose. At the time it felt like an overreaction, and I mocked myself in my more sober moments. I knew something bad was happening though and I felt powerless against it. It was the start of a dark week.

At this point I still believed that the issue had mostly been identified: I had a cyst on my pancreas that was so big it was blocking the bile duct from my stomach. This was stopping bile leaving my body, resulting in enzymes leaking into my blood which shouldn’t have been there (not a medical professional, do not hold me to account on the specifics). It was the high levels of this enzyme that was picked up in my blood tests at A&E. This condition is called jaundice, and it was the reason I was struggling to eat and felt extremely weak. Another symptom of jaundice is yellowing of the skin and eyes. Since experiencing it, I have wondered if the creator of The Simpsons purposefully made his entire character catalogue jaundiced. It isn’t a lot of fun and I don’t recommend it, and I can’t watch his show without suffering from PTSD.

A few days went by, and I didn’t hear anything about the PET scan. All of a sudden, I got a call from the endoscopy department at King’s College London. They told me that my endoscopy was being “re-prioritised” for the following week, November 3rd. This concerned me, but I was happy it was going to be done soon. Anna and my mum told me not to jump to conclusions about why it had been reprioritised. Perhaps they had a cancellation. I wasn’t so optimistic. The next day the specialist called me from King’s for a general chat about how I was. At the end of the call, I asked her if she had received the PET scan results. “Are you sitting down?” she asked. I said I was as I paced my front room, gritting my teeth through the growing sense of dread.

“The scan picked up a localisation in the expected area” she said. Unfortunately this phone call didn’t come with a translator so I had to dig further myself. “What does that mean?”, not an unreasonable question in context. “The scan detected a localisation in your pancreas. The good news is it that it hasn’t spread outside of this area”. I wondered if I was still speaking English. Does cancer also impact your ability to comprehend language? “So do I have cancer?” I replied, hoping that would do the trick.

“You have a cancerous tumour but we believe it is a rare form of cancer which has an extremely high recovery rate”. I stood there for a second and contemplated; Anna had run into the room and was staring at me. “So I do have cancer?”, it had to work this time.

“Yes, you have cancer”. She finally shut me up.

7 thoughts on “The Road to Diagnosis: Part 2

  1. One of your German cousins here – love the story about the bedroom door! Your news really shook me and the kids, and I can only imagine how the tension and worry building up to that last, finally clear sentence from the specialist must have felt like for you. Thank goodness you kept on chasing things down with the doctors! Keep up the humour, the positivity and most of all the gratitude. Even the darkest days have a little twinkle of light in them, if you look hard enough. Thinking of you xx

    Liked by 1 person

    1. Ah so nice to hear from you! Yeah unfortunately this wasn’t even the proper diagnosis; there was a whole load more to it. I’ve given away the big secret! You’re absolutely right about the dark days though and you’ve put it brilliantly x

      Liked by 1 person

  2. Lynne Eardley says:

    Thank you for sharing your journey so far Daniel, I have been glues to every word! Sorry I only know you as Daniel, the quiet one! Don’t quote me on that as I shall deny it!! 🤔🤨
    Your bravery and positivity know no bounds. I applaud you and respect you for your honesty throughout.
    I send you love and promise to follow you.
    From Lynne (Mrs Eardley)
    Positive blessings from Philip (Mr Eardley)
    Awfully formal Hahaha xx

    Liked by 1 person

  3. Daniel, You have traveled the road of your diagnosis with strength, grace, and optimism. Thank you for sharing your experience and for doing so with dignity and incredible courage. Sending you much healing and light. I’ve really enjoyed reading your blog.

    Liked by 1 person

    1. Thank you for this lovely comment Kerri! I’m really glad you’ve enjoyed reading the blog too. It is definitely intimidating sharing some of the more intimate moments but supportive comments like yours completely vindicate any reservations I had!

      Liked by 1 person

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