Journey

I Guess We’re Mortal After All

godley93, , , 4 Comments

I’m feeling emotionally volatile this week. It is probably a combination of a few things, but I’ve been trying to come up with candidates in my mind. My third cycle of chemotherapy has been feeling harder than the others mentally. There is always a lull period after a positive build up to Christmas, where the excitement dips again as another year draws to a close. I also wonder if I am experiencing a down period after finally releasing the blog, after thinking about the concept over a matter of weeks and feeling so excited by it; it doesn’t diminish my sense of accomplishment and satisfaction with the blog, but I think it is worth mentioning as a potential factor.

I’m finding myself gravitating to a metal band called Architects’ 2018 album titled ‘Holy Hell’ at the minute. It was their first album release after their guitarist and one of their founding members, Tom Searle, died of cancer in 2016 after a 3-year battle with cancer. Tom Searle’s twin brother Dan Searle is also a founding member of the band playing drums. He was aged 28 when he died, the same age I am now and the age I was diagnosed with pancreatic cancer. Together, they were the sole founders of the original band.

The band are undeniably “heavy” and will not be to everyone’s taste, but the album is littered with poignant and heart-wrenching lyrics of loss and grief. In a different sort of post, I am going to pull out some of the lyrics which speak to me in my current headspace and talk about them.

Dan Searle is credited for these lyrics as far as I can see, so you know that they are coming from a place of real pain and loss. Despite being very close with my entire family, I cannot imagine what Dan Searle went through writing these lyrics and processing the situation. These twins were founding members in their band who went on to become one of the most successful in the genre, in the UK and beyond. They achieved so much together, yet Tom’s life was drawn to a tragic, premature close. Unfortunately, that is the reality of cancer sometimes.

Mortal After All

Have you forgotten the deal we made?
I've seen the end and the pain we trade
All these walls will fall
I guess we're mortal after all

I can only speak to my experience here but accepting my own mortality has never been easy for me. The cancer diagnosis certainly forced me to address this somewhat dark reality: that life is fragile, age is not a guarantee of health and that one day, we all must address the fact that we are mortal after all. The thing I have always wrestled with more is the mortality of the ones around me that I love. When I was young, I would spend a lot of time worrying about my parents and how they may die. Would they suffer? Are they scared of death? I’d torture myself over those questions more than I would ever torture myself over the question of whether I fear death or if I would suffer at its hands. It didn’t seem relevant to me yet; I was too young to think about it. Something I have learnt about myself in this process is that I genuinely don’t think I fear death or suffering. For the first 2 weeks after my diagnosis, I did not get any reassurance from any medical professionals that I had a good chance of survival. It felt like it was time for me to accept that this will likely kill me, something which I thought would be daunting. In reality, I could only think of all the incredible people I know in my life, the friends I’ve met, the things I’ve done and the times I’ve shared. I felt no fear of death, only appreciation of what I had in my life. To be able to die feeling that way felt like an honour, and I was proud of it. The ultra-marathons I revelled in entering took a lot of suffering, both to train for and to complete. My suffering at the hands of the cancer isn’t so different, and I’m sure if I manage to beat it, the end will feel comparable to other fitness events I have completed, but with a much higher degree of emotional intensity and reward. It is a reminder that we are all mortal though, a fact which isn’t worth dwelling over constantly, but worth remembering.

Doomsday

They say "the good die young"
No use in saying "what is done is done" 'cause it's not enough
And when the night gives way
It's like a brand new doomsday
What will be will be
Every river flows into the sea, but it's never enough
And when the night gives way
It's like a brand new doomsday

I remember first hearing this song and finding the lyrics in the chorus utterly devastating. The injustice and pain of the situation cut through the song, with the added depth of the shouted vocals and driving guitar riffs. You can feel the anguish just reading the words. In my current situation, I really relate to the concept of a brand-new doomsday being felt over and over again. Some mornings I wake up and cannot control my negativity over the situation. The morning brings a new doomsday which I must work through. It is not the same doomsday as Dan is likely writing about, as his is one of grieving, but I like to think they are coming from a similar place. The imagery of the line ‘Every river flows into the sea, but it’s never enough’ always strikes me. Us humans are quite self-centred generally, and we get very caught up in our own reality. But the fact is that the world continues whether we live or not, and we are the only ones really trying to seek meaning in any of the things taking place. Everything else just is. It may feel like it isn’t enough for us because we attach so much emotion and meaning to things that occur in the world, but in the grand scheme of things, everything that happens just happens. Although it sounds nihilistic in a way, I take a lot of positivity from this fact. If my life is due to end at the hands of pancreatic cancer, then that is Ok. I am not naïve enough to think that I am making it out of life alive, I just hoped I would not be dealing with this situation at such an early age. But there are plenty of people who have died younger than me, who have suffered more than me, and who are battling far more difficult situations with less support than me. I was born into a love-rich family, in a wealthy country and with a stable life around me. The world will carry on whether I live or die, and I like to think I will have left an impression on the ones I love that will keep my memory alive longer than my body was ever capable of.

A Wasted Hymn

Is this penance for my sins?
I gave everything for this phantom limb
Holy Ghost, nothing lasts forever
Now it's time to sink or swim
I've got nothing except this wasted hymn
Holy Ghost, nothing lasts forever

I got into A Wasted Hymn a few years after the album came out, only a few months before being diagnosed. It came on random on my Spotify I think, and the chorus spoke to me more than it had any other time that I had listened to it. The feeling of hopelessness is so well portrayed in the chorus, with the attempt to excuse it in the words ‘Holy Ghost, nothing lasts forever’. The fact that the hymn is described as wasted emphasises that the feeling is that the subject, Dan, feels as though the words mean nothing if they cannot change the reality of the situation. Or that is how I read it anyway. For me, the song strikes a lot of emotion in me as it makes me think about my loved ones trying to process what is happening and may happen to me. Will the same feeling of hopelessness and nihilism be prominent in their thoughts? Will they try to blame themselves in some way (‘Is this penance for my sins?’)?

All these lyrics are a grave reminder that your death doesn’t end all the pain for everyone else, it is the beginning of a new pain for the people who love you. All I can say to reassure them from my perspective is that I truly believe that death is the end of the pain for the person dying, and that you must hold onto that fact. Sometimes, it is the only positive that can be drawn from a person’s death. The world existed for an inconceivable time before we were born, and it will continue to do so after we die. Although our lives are full of meaning and beauty, we are all bound to fade back into nothingness eventually, and that is what makes life so special, as well as painful… nothing lasts forever.

The Road to Diagnosis: Part 4

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Despite all the advice to not panic, I was experiencing panic in abundance. How else would you expect someone to respond to this situation? The specialist had told me that she finished at 18:00 but should be around until 19:00. If I missed her, I would be spending the night alone in a hospital bed, bouncing around the worst-case scenarios in my mind, just as I was now. Your head can be a dangerous echo chamber, especially when the word resonating around it is ‘cancer’. My mind was racing, my body was shaking, and I felt terrified. We quickly got in Josie’s car and set off. The sat nav said that we would get there just past 18:00, but it wasn’t pre-empting the increased volume of traffic as we got closer to rush hour.

Josie was infallible. She was razor-focused on the road. The car was silent apart from the occasional doom-speak coming from my mouth, “What if it’s incurable?” I wasn’t making it easy for my mum and Josie to stay composed, but both were mostly managing it. I was frantically texting away on my phone, speaking to Anna, friends, anyone who would listen. Time was racing yet standing still. I couldn’t give my mind a second’s rest. It was hell.

The only respite to the tense atmosphere came about an hour away from London. “Do we have time to stop at a service station? I really need to wee,” I’d been holding it in for an hour but had other things on my mind. Now it was becoming unbearable. “I’m not sure. Can you go in a bottle?” Josie responded, originally only half-serious. “I’ll just hold it,” I responded after looking around me and seeing no plastic bottles.

Now, I’m not proud of any of the next bit of this story, please remember that. In 2019 I had purchased every member of my family a Chilly’s water bottle for Christmas. If you don’t know what a Chilly’s bottle is, it is a lovely brand of reusable and refillable water bottles. They have interesting designs, and I had tried to get each member of my family a design that spoke to a part of their personality or interests. I had also purchased myself one, and I had it with me that day…

After requesting that my sister turn the music up to a much louder volume, and asking them both to avoid looking behind them, I started the undignified action of weeing into a premium quality reusable water bottle whilst sitting in the back of my sister’s car, with both my sister and mum in the front seat. It isn’t my proudest moment, but it did make us all laugh. The panic set in when I realised it was nearly overflowing and I wasn’t quite finished. So, I had to force myself to stop weeing (not an easy thing to do), before pondering what to do with it. Well, it doesn’t take a genius to work out what the conclusion was. I wound the window down, looked out the rear window to make sure there was some distance between us and the car behind, and braced myself as I threw the liquid out… on the motorway…whilst travelling at 70mph. There aren’t words in the English language to adequately describe watching your own urine splat on the outside of a car before breaking out into the air behind the vehicle. The indignation is amplified when you know that your own mum and sister are also witnessing it. I went through the whole process again before closing the window and sinking into my seat. We all laughed about it, and to an extent, we forgot about what was going on for a few minutes. I haven’t used the bottle since and somehow managed to lose the lid in the process.

As we got closer to London at about 17:00, we saw the ETA creeping up on the sat nav. My mum and I decided to get dropped off at Ealing Broadway station and take the underground into Victoria, then take a train to Denmark Hill where the hospital is located. We hardly spoke as we sat on the tube. In between being plagued with my own thoughts, I listened to the conversations around me. A woman was chit-chatting to her boyfriend. She was annoyed at her friend for bailing on a night out. As I listened, I tried to empathise with her, but I couldn’t summon an ounce of pity. I longed to hear someone say something real and of substance. I wanted to hear someone talk of real pain, loss, suffering. Why did your friend not join you? Maybe she was going through something? Did you take the time to talk to her about what was going on in her life? I felt mad at her for having such fickle problems, for being so self-centric as she continued to complain. Every sentence was about her, never her friend. Maybe I was moving into my ‘anger’ phase I thought; the denial would surely come after the diagnosis.

We made the train at Victoria with a few seconds to spare, but we had been forced to run. It was busy but we managed to sit down. My mum held my hand, but I didn’t notice. Both of my eyes were focused in front of me. The world was happening around me, but I didn’t feel like I was taking part. How many times have I sat on a train with my headphones in and phone in my hand, not knowing that the stranger next to me was travelling to receive a life-threatening diagnosis? I was shaking. The 15-minute journey dragged, and the city looked grey out of the window. Nearly there.

Anna was waiting for us outside of the hospital building. We walked up to the bed’s ward and went to the reception. They took us into a private room with a bed and a separate bathroom. We were told the specialists would be along shortly. I sat on the bed with my mum and Anna beside me. We waited.

A few minutes later there was a knock at the door. It was my representative from the multi-disciplinary group who spoke to me on the phone with a surgeon I had not met. The head of the multi-disciplinary group who was supposed to be there had to fly back to India at very short notice as his dad had been rushed into hospital. This surgeon looked relatively young, perhaps late 30s, early 40s. I wondered how much he knew about the case.

“Tell me what you know,” he said to me. I wasn’t in the mood to do this. I gave a very quick summary of the cyst, the SPPT tumour and how I knew he was about to tell me that some of those details were wrong.

“It’s bad news I’m afraid…” He paused dramatically. I wondered if he had learnt to deliver bad news from television dramas, or if the dramas were just accurate representations of real life. I heard Anna and my mum immediately burst out crying. My hands both raised to the back of my head. I was holding the surgeon’s gaze. He had a solemn, serious look on his face. I wondered if the sternness was a part of his personality or another tactic to communicate the seriousness of the diagnosis.

“Am I dying?” I immediately asked, not understanding why he thought this was an appropriate way to deliver news. I wanted detail but all I was getting was dramatic silence.

“You have pancreatic cancer. It’s an aggressive form of cancer. We need to get you into chemotherapy straight away, but we can’t whilst you’re jaundiced. The priority is to install a stent in your bile duct to correct the jaundice, then get you onto treatment. The hope is that the chemotherapy takes, then we will need to perform surgery to remove the tumour.” He delivered the words like a death sentence. There was no emphasis on the fact that the cancer hadn’t spread or that I was very young for this cancer so could have a much higher dosage of chemotherapy than the average pancreatic patient. I had to find these facts out later, once I was referred to The Christie for treatment. For now, they bowed their heads and left the room. Anna and my mum were distraught and grieving. I sat feeling numb. “I knew it was bad,” I said. I was smiling by now. It felt vindicating to hear the news after the hellish journey and emotional turmoil of the day. The verdict I quickly drew was that this was likely to kill me, and that I needed to find peace in that fact. I turned to Anna: “Let’s get married. I haven’t got a ring yet, but I’ve been looking. I don’t want to waste any time, let’s just make it happen.” It was very presumptuous of me, and she burst out crying again. We all hugged, including my mum. I took it as a yes.

The procedure to install the stent was planned for the next afternoon. I was to spend a minimum of 3 days in hospital as general anaesthetic was being used, so I had to be monitored the evening before and the evening of the procedure. It was another endoscopy, but I was being put under general anaesthetic. To my relief, the head nurse recognised that the situation was particularly volatile and told Anna that she could stay in the hospital with me to provide emotional support. My mum left to spend the night with my sister Josie in West London.

There were a few reasons that I slept very little that night. A nurse was required to come in and check my vitals what felt like every hour, but it may have been less in reality. This didn’t bother me though. I liked it whenever I got the chance to interact with someone external to the situation. I could pretend that nothing had changed in my life, make jokes, build rapport, laugh. Then they left, and it was back to contemplating my life. Anna was sleeping. I listened to music, spoke to friends who lived in the states and were still awake, and watched some YouTube videos. Predominantly though, my mind was focused on the diagnosis.

“Everyone dies. I’m just more aware of what will probably kill me now than I was a few hours ago, and that’s fine. There are worse ways to go. I have my family and friends around me. I have my fiancé. Life is good.” It was beyond doubt in my mind. I was dying, and I could either accept that fact or let it overwhelm me and kill me quicker. The latter wasn’t an option. “I’m going to go out enjoying every second of it.” It almost felt peaceful in the breakthrough moments. In others it brought me tears; I grabbed my jumper and cried into it, trying to muffle the noises so as not to wake Anna. I skipped between feeling elated, to wanting to scream until my throat bled.

At most I got an hour’s sleep, and that was mainly in small 10-minute intervals. My mind was haunting me. Strange things were happening in my sleep. One time I nodded off and, in my dream, I was in the hospital bed, but the door to the room was slightly open. Outside I saw a black thick substance all over the floor. It was slowly moving into the room. I suddenly woke up and felt awful. The whole thing was so ominous. It had been 15 minutes since I last looked at the time.

We spent the morning together in bed. I think we watched a bit of TV on the laptop, but we didn’t need to fill the time, it seemed to just pass. Eventually someone came to collect me for my procedure. I had to get into a wheelchair, and I was attached to a drip. It was the first time I really felt like a cancer patient.

I found myself in the same endoscopy preparation room as the first time, apart from this time, I knew I was going to be under general anaesthetic, so I felt rather smug about the whole affair. The doctor appreciated my gloating about it being my second endoscopy in 6 days – “That is good going. How was the first one?” he innocently asked. “I’m glad to be under general anaesthetic this time, put it that way,” I responded. He laughed; I wasn’t joking.

The procedure was needed as my bile duct was blocked due to the size of the cyst on my pancreas, not because of the tumour. The stent is a thin hollow tube that they insert into the duct, stopping it from being contracted and allowing liquids to run through it again. “It is a standard procedure,” I was told every time it was brought up.

Eventually I was taken into the procedure room, and my memory fades shortly after that. The nurse asked me my weight so they could issue the correct volume of drugs. I knew my weight had dropped a lot as I hadn’t been eating properly for weeks, but I wasn’t sure by how much. “73kg I think, but I’m not sure,” I responded. The doctor started speaking to me about the best oncology hospitals in the country for pancreatic treatment, but somewhere around here the general anaesthetic was issued, and I was out.

When I woke, I felt out of it. I was trying to sit up but struggling to support my weight. The nurses ran over to me and told me to relax. “There’s a lot of pain in my abdomen,” I told them. They immediately started issuing morphine every 6 minutes. I’d heard a lot about morphine, mostly positive. That was a different experience to mine. It may have been the lack of sleep, or the combination of it with all the other painkillers I was already on, or perhaps both, but I sat there feeling completely dissociated from the world around me. After about an hour and a half it was only me left in the observation room in terms of patients, but there were 4 nurses idling around waiting for me to be cleared to go back to my room. I got speaking to one of the nurses about her son, and she was showing me pictures on her phone. “I guess I might never have kids now.” The words dropped out of my mouth without me realising the weight of what I had said. She apologised to me and seemed ashamed of herself. I didn’t realise at the time. I wish I could apologise to her now. My mind was vacant and the words were more an observation than a realisation.

Eventually I was cleared for release once the pain had died down, and I was taken back to my room.

They discharged me from the hospital at about 16:00 the next day. They checked my weight as part of the discharge process and it was 66kg, far under the 73kg I had told the nurse. It must have contributed to how bad I had felt after the procedure. Anna’s best friend Sophie picked us up to take us home. She had also driven over a load of belongings from our house the day that I had rushed into hospital and went to the shop to buy the most complete bag of snacks I have ever seen. We pictured her running down the aisles of Tesco with her hand out, slapping one of every snack in stock into her basket. She’s helped us out so many times during the journey with cancer and beyond. Sophie is another amazing person that we have around us, and she is always checking in and making us laugh. Eventually I will manage to pay homage to every person who has been significant to us, but it will take a lot of posts. You see people’s true colours shine in these extreme situations, and I’ve been extremely fortunate to find out that most of the people I know are incredibly thoughtful, empathetic and selfless individuals. They make fighting the cancer so much easier with their support.

Anna and I were looking at moving back to my parents in Cheshire. I didn’t want to undergo treatment at St Thomas’s as it was in central London right next to London Bridge, the last place I wanted to be regularly going for treatment during a pandemic. It would also save us a lot of money, and my financial situation was looking bad since my employer would only pay me in full for 1 month. I had already been off for 6 weeks. At King’s, I had raised the idea of the move with the specialist, and she had told me that she would write a referral for me. 2 days after leaving the hospital it had been confirmed that I would be going to The Christie in Manchester for treatment. It was a huge relief, and The Christie quickly got in touch with me to arrange the first meeting. It was time to start embarking on The Road to Recovery.

The Road to Diagnosis: Part 3

godley93, , , 8 Comments

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.

The Road to Diagnosis: Part 2

godley93, , , , 7 Comments

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.