I Hate the Sea and Everything In It

The Road to Recovery

Matt, Lucy Dog and Me at The Flat in London

It’s been a few days since I got the scan results. I wish I could write that my inner stoic has surfaced and that I’m taking the results on the chin. In a way, I think I am dealing with it fairly well, but it is still difficult to face. Although I did not get any bad news per se, the vibe of the meeting just left me feeling deflated. It worried me more that I was asking questions but not really getting any answers. Responses such as “I can’t answer that I’m afraid” and “It isn’t clear at this stage” aren’t necessarily a bad thing – I understand that giving an answer when you aren’t confident it is correct, or where it isn’t your responsibility to know, is not a better thing to do. A little bit of optimism or encouragement goes a long way in these meetings, though. I do not feel like I got a lot of that in the last one. Uttering “so, I don’t have any bad news for you today,” may constitute optimism in some people’s books, but in mine it constitutes the bare minimum amount of optimism you can provide as a foundation to a meeting. Maybe Dandard’s standards are just too high and I need to ground them a bit.

The event that originally charmed me about The Christie happened during the first meeting with my specialist. Up to that point, I had faced nothing but negative news, pessimistic outlooks and concerned faces. Having a medical professional utter things such as “we’ll get you back to running marathons” and talking about how I’m young, so there are many options for me, made an incredible amount of difference in my spirit. That is exactly what the oncologist did in my first meeting at The Christie. I practically skipped out of the meeting and felt so relieved that someone had painted a different picture of my diagnosis. All of a sudden, it felt like the possibility of a meaningful future still existed. That wasn’t something I’d managed to entertain until that point, since being diagnosed. Things got better from there; it was easier to feel like myself. Yet nothing had been promised to me. I wasn’t going to bang on the oncologist’s door and demand to know why he had told me that I’d be running marathons again if my tumour ended up being inoperable, or if there was a recurrence after surgery… or even if I was cured, but didn’t feel like running marathons anymore. I took it for what it was – a vote of confidence. A communication that things can return to normal, that there is a way to be cured from this disease and return to my normal life. It felt amazing, but it seems to be uncommon in the world of oncology to offer up such pleasantries.

It seems pessimistic to even need such reassurance, as if I should know that there is a cure and that it is possible in my case. The literature around pancreatic cancer does not leave you feeling particularly confident that there is such a cure, though. Nearly all success stories seem to be where the tumour could be removed quickly, and where the cancer was identified at the earliest possible stage. My cancer was diagnosed early, relative to the average diagnosis, but it wasn’t early enough to allow for surgery. Pancreatic cancer is often diagnosed at a late stage as it only starts showing symptoms later on… or at least, that is when the symptoms get significant enough that pancreatic cancer is considered, as opposed to something much more minor. In my case, I was told that I was suffering from a mild form of constipation. Turns out that diagnosis was incorrect, unfortunately for me.

Despite being diagnosed relatively early, my tumour is still locally advanced and has other complications, such as it’s m unfortunate appetite for arteries, making it difficult to remove. There’s also the unknown ‘mass’ which is apparently bewildering the oncology team; previously known as a ‘cyst’, but becoming more mysterious over time, and even getting smaller in the last progress scan – a property of cancerous cells. The ‘cyst’ label seems to be a misnomer, but I’m not a huge fan of the nondescript ‘mass’ label that has now been assigned to it. Those facts are playing on my mind as I wait for the surgeon’s verdict. If my meeting had been more encouraging, either by having more positive results or having a more hopeful delivery of the results, I may be dealing with the anticipation a little better.

That isn’t to say I am blaming the oncologist either. Through a workplace help scheme, I got 6 counselling sessions paid for which I decided to start using a few months ago. My final one was today. It actually should have been a few weeks ago, but my counsellor suggested making the sessions 30 minutes instead of an hour so we’d cover a larger period. It was extremely kind of her to do so and she was under no obligation to.

Speaking to her earlier, we discussed how the oncologist’s job is actually quite prescriptive. It is a matter of enforcing processes, evaluating results and responding to those results in a mostly regimented way. For example, you are identified as needing x type of chemotherapy. Within the chemotherapy cycle, there are checks a, b and c which are used to determine how well it is going. If something goes wrong, there are appropriate ways of identifying the issue, and then responding to it. For example, if your platlets are identified as being too low for treatment, you will delay the treatment by another week and check the bloods again, to see if the levels have recovered. Everything is constrained, and the approach is standardised insomuch as it can be. Some things may fall out of the standardised approach, such as where the individual gets an infection and the team need to find that infection, assess how dangerous it is and then help the individual fight it. For the most part, though, an established process is followed. The surgeons work is where a more creative approach must be adopted. It is where the individual specifics of the case must be properly dealt with in a direct manner.

The surgeons also offer up the next major piece of progress, allowing the treatment to progress further. As far as I understand, the success of the surgery itself will determine what comes next in terms of a treatment plan. Sometimes the surgeon will go in and find a different situation to what they expect in terms of the tumour. For example, they may go in to find that many lymph nodes have also been impacted, making the surgery more time-consuming and risky. The fact that I also have an unknown ‘mass’ to remove will undoubtedly make the surgery more complex. Perhaps that means that they are less likely to consider a full removal as an option for me, or perhaps it makes them more inclined to try if leaving the mass increases the perceived risk of me dying. I just don’t know, but neither did my oncologist. Or he wasn’t willing to vocalise his opinion on the matter. I’m sure he has an inkling what the answer is, but it wouldn’t be in his favour to offer up an opinion if there was a risk that the decision from the surgeons does not go in that direction. I’m sure it’s more than just a risk that such an event happens.

I keep thinking of it in terms of my work experience to try and offer myself some comfort as to why I could not get my questions answered. If I am on a project and a client is asking about the budgetary constraints which I am not aware of, I would not offer up an opinion on the matter as it is not my expertise. At very least, I would tell them that I did not know, but will speak to the appropriate team and get back to them. Either this or I would organise a meeting with the appropriate team so that they could discuss it. What the oncologist did is not too far from this, which comforts me somewhat.

They did not attempt to get a surgeon involved in the meeting, to offer an olive branch in the form of asking one of the surgeons to call me sooner to answer my questions, or to get some detail from the surgeons to offer up alongside the news that the case was being passed them. Perhaps there is a specific reason for none of these things happening. My guess is that the teams are considered completely separate functions, divided not only by discipline, but by the actual hospital they operate from too; my oncology team are part of The Christie, whereas the surgery team are based at Manchester Royal Infirmary. That means that the oncology team probably do not have any right to ask for their time. I get that, but it would be beneficial for the patients if the oncology team could try and coordinate such a thing. It may lessen the anxiety ridden month that follows the news that your case is being referred to the surgeons. The surgeons must have representation on the multi-disciplinary meeting after all, seeing as that is the meeting where it is agreed that it can be passed to their team in the first place.

But anyway, criticisms aside, the task is to now keep myself busy and not dwell on what may or may not happen. For a month I have no treatment, no meetings, no appointments. There is a comfort in that. I’m trying to embrace it, use the time to start doing some normal ‘life’ things. Anna and I drove to London to spend a few days back in our apartment. On Friday, I attended some work drinks for my manager who is moving on from the company I work for. She has been a great support throughout the last 8 months. It is sad to see her go, but it was nice to do something ‘normal’ again in attending her leaving drinks. I hadn’t seen anyone from work for around 8 months, since I was first in A&E with abdominal pain, on a random Monday evening. Everything changed so quickly; nothing that was previously considered ‘normal’ feels normal anymore.

I got a little carried away and had three pints. It was over the course of about 4 hours, but I ended up getting in late, eating even later, and going to bed even later than that. Not a lot of alcohol is required to get my anxiety going these days. I lay awake at 5am, after getting a few hours sleep, in the spare room of my flat in London (the master bedroom is being rented to a friend Matt as I couldn’t afford the mortgage whilst not working). I felt angry at myself. My mind paced yet further through the emotional landscape. Anger turned to worry. “Why am I drinking three pints when I’ve got a tumour? Could it worsen my condition to an “extent that the surgery could be unsuccessful? Worry turned to pure pessimism. “Who am I kidding, I’m not going to get the surgery.” It sucked.

I wish I could be easier on myself – the logical part of my brain knows that I don’t drink often, and three pints is far from a ‘session’ by normal standards. Anything that can make you feel bad under these circumstances, will. It feels like it is part and parcel in these uncertain periods. Nothing is good enough, everything is intimidating. Any cracks in your mindset start to break into holes and the vulnerabilities you harbour start to rise to the surface. Perhaps it is necessarily to feel it to allow you to then process it all properly.

Saturday was busy. I needed it to be. We met friends for brunch in the morning before walking Lucy around Clapham Common. There were sausage dogs everywhere, and Lucy had a great time playing with dogs her own size for once. Then we went to a friend’s birthday drinks in Tooting. By about 17:00 we were back at the flat, getting ready to host my brother in law, Keiran, and sister, Josie. It was Keiran’s 30th birthday. He seemed to like his presents from the family which was nice! I also made him some double chocolate chip cookies. He had about half of one but I wasn’t offended – he is currently trying to eat less ‘bad stuff’ and they definitely fall in that category. The other 30 are being eaten by anyone else who walks into the flat. I’ve been sending people home with multiple just to make sure they don’t go to waste (and that the responsibility to eat them isn’t all left to me).

Lucy’s First Time on the Tube

On Sunday, my brother was competing in a cycling event in London. A few of my family members, including my parents, all met up in central London to meet him afterwards and go for food. I think the previous few days had caught up with me. We sat outside waiting for him to finish, but I managed to get incredibly cold, despite wearing two coats, a long sleeve top and a t-shirt. I’m not sure what was going on really. Once he had finished, we went to a local pub for some food. I was falling asleep and wasn’t good company at all. Anna and I left early and made our way home. Lucy seemed tired too so I think she appreciated it – the previous day had been a lot for her too. That did mean she couldn’t beg for any more food, though, so perhaps she was a little bitter. After getting home and napping for a bit on the sofa, I managed to force myself to run 4 miles. That felt pretty good and helped me a lot mentally, even if it absolutely killed me physically.

Working in a Cafe with My Bezzie Dee and Lucy

So, the mental back and forth continues. At times I manage to embrace my inner stoic and feel like I’m at peace with what is going on. I am in many ways. I accept the negative statistics that get plastered on every pancreatic cancer website, I just refuse to accept that it is inevitable for me to become part of them. If I do, I’m ok with it, but I want to know if that is the case. Currently, I reside in a place of limbo. Getting out and staying active seems to help, though it tires me out and leaves me feeling exhausted. I’m finding keeping busy to be a double-edged sword. It is good, but also leaves me feeling like I am avoiding some unpleasant realities about the situation. Those negative thoughts only emerge from the shadows of my mind when I have pockets of time to myself; it makes me realise that I am probably struggling to accept it more than I allow even myself to believe.

Cleaning Lucy’s Teeth

Perhaps I am over-dramatising the importance of the next step. I’ve really convinced myself that it is either full removal, meaning I can still be cured, or nothing. Not nothing meaning that the surgeons won’t do anything, but nothing that could lead to me being cured. I’m sure it isn’t that straightforward, but the oncologist couldn’t give me any answers of substance when I put the questions to him. As opposed to accepting that he really may not know, I can’t fight the thought that he does know, but it isn’t down to him to break the news to me. I’m sure that I am being paranoid and just not recognising that my brain is moving into a new phase of contemplation, paranoia, but I never got any reassurance from him that allows me to easily shrug off those thoughts. I’m heading to Dorset on Wednesday anyway. Lets see if the sand on the beaches, sound of the ocean and salty breeze helps improve how I am feeling about it all. There’s only one problem with that – I hate the sea and everything in it. It is lovely to look at, though.

Infections Ahoy: 2 Hospital Visits in 24 Hours

The Chemotherapy Diaries

Yestrerday morning, I was admitted to the hospital with a suspected infection. My temperature was 38.2. The ‘healthy’ range is about 36.1 – 37.2, I believe. If it is above 37.5, that is when the chemotherapy hotline become particularly worried by it. Who knew there could be another twist in the chemotherapy tale? It’s a good job I haven’t made any lofty claims recently about Completing Chemotherapy – that would make me look pretty stupid.

I’ve felt extremely tired these past few days, but that doesn’t raise an eyebrow in week one of the chemotherapy cycle. Randomly regaining consciousness on the sofa despite having no recollection of falling asleep is part of the first week’s rituals. Sure, I’ve been getting the usual attacks of stomach pain, digestion pain and general abdominal pain, especially during the night. Why would that be any more concerning than usual, though? You wouldn’t put a polar bear in a Tunisian zoo and then ponder over whether it is too warm. You know it’s too warm, you just want more people to visit your zoo. I actually did see a polar bear in a Tunisian zoo when I was 18. The poor thing was laying on the concrete in the scorching sun; it looked completely defeated. It was the moment I swore myself off zoos.

I got on with things as normal. Tuesday night’s sleep was broken but not too bad; in the morning I felt a little more exhausted despite sleeping for twelve hours. Still not too concerning. Wednesday I spent lounging around the house, slowly mustering the effort together to get out into the big bad world and walk Lucy the dog. Anna and I finally managed it at lunchtime. We were out for about an hour and the sun decided to join us. The rest of the day was a blur really – I can’t remember what else I did. Fell asleep more, read my book and lounged about, probably. Wednesday night was when the serious fatigue kicked in again. Not totally unusual, but I didn’t experience it like this often.

Walking Lucy – Picking Up a Gift from a Family Friend

I was struggling to stay awake on the sofa from about 21:00. Before this I was fighting the tiredness, but after 21:00 I simply couldn’t stay awake. The abdominal pain was also worsening which is unusual for the early evening. It usually only happens in the middle of the night and in the morning. I went to bed early and had a strange night, drifting in and out of sleep and feeling particularly bad. There isn’t a better way to put it really. Just bad. By the time it was morning, I had a high temperature and my skin was boiling hot. A high temperature is the clearest (and sometimes only) sign that you have an infection. Infections are extremely dangerous whilst on chemotherapy, and can be fatal if they are not dealt with quickly. Your body is busy processing the chemotherapy drugs, meaning that the load on your immune system is heightened. So, things which may be routine for your immune system in day to day life become big problems whilst on chemotherapy.

That is why your thermometer is your best friend whilst on treatment, and at first I hung out with mine regularly. As I settled into treatment, though, I started thinking I knew it all. I stopped really checking my temperature, deciding that chemotherapy was easy and that my body was an impenetrable fortress. The road to hell is paved with good intentions. I thought it was in everyone’s interests for me to not check my temperature – I save myself an entire 10 seconds every morning, no one worries about me having an infection and I don’t have to bother the staff on the chemotherapy hotline, who have older and more vulnerable patients to attend to. When I eventually conceded that I felt a little hot and Anna told me that my chest was ‘boiling’, I grabbed the thermometer. I put it under my tongue and waited for the beep. Beep – 38. Fuck. As stated earlier, anything over 37.5 is moving into abnormal. 38 is the highest I’ve ever seen my temperature go. The reality of the situation set in; I’m going to have to call the hotline in my final cycle, aren’t I?

It is amazing how quickly self-preservation kicks in when you are in these stressful situations. As I sat on hold to the hotline, I tempered my thoughts on whether what I was doing was appropriate or not. Despite reading online that a temperature of 38 on chemotherapy unequivocally requires the attention of the oncologist, and fast, I kept checking my temperature to see if it was a false reading. I got a few 37.8’s, a 37.9, a few more 38’s. All of a sudden, I got a 37.3. Phew, it’s normal again, I said to myself. Just before I managed to hang up, a woman picked up and asked for my hospital number. Damnit, they got me. She asked about my temperature and I explained that it has been a little bit all over the show. “What is the highest temperature you have recorded?” She asked. “Well, the highest is 38 but I’ve had quite a few 37.8’s…” she cut me off mid-sentence. “You need to come in, I’m reserving you a bed now. Can someone drive you and can you get here in the next hour?” I felt like a deer in the headlights. I resented the thermometer for doing this to me; that’s the last time I’m trusting you.

I knew something was wrong, though. Even now, 7 months after a cancer diagnosis, I still try to avoid doing anything which may disrupt the idea that everything is going well. Accepting that I have a high temperature and possibly an infection means that something needs to be done about those things. That something may result in more uncomfortable truths coming out about the cancer, treatment, or who knows what else. You want to curl up in a ball and wait it out instead. It’ll be fine. Probably. Unfortunately, that type of avoidant strategy won’t do you any favours in the world of your health. Putting off appointments, ignoring symptoms and pretending that you feel Ok, all just lead to bigger problems in the end. Even if it doesn’t – getting checked out will settle that voice in your head which tells you something is wrong in those quieter moments. You may have to do a few uncomfortable things in the process, but life is full of uncomfortable moments. It happened to me for over a year when I was trying to get my abdominal pain diagnosed. I never thought it would actually be cancer, no matter how many jokes I made about it being so. Those jokes seem in bad taste now, but that is clearly one way that I dealt with the uncertainty of not knowing what was causing the pain at the time.

The operator had told me to bring an overnight bag and set off straight away. I got a few things together and pulled myself out of bed. My head was spinning and it felt like someone had lit a fire inside it. I felt like a zombie as I walked, struggling to speak coherently and feeling fascinated at how the human body copes with the world. So, when you have an infection your brain heats up does it? Perfect.

Anna dropped me outside the front of the hospital. I had to go to a department I’d never been to before – Department 22. It wasn’t the ideal time for an adventure. If anything, the zombie description was only becoming more accurate as the day dragged on. Adequately stringing together sentences was becoming a unsurmountable task. As I walked the corridors of the hospital trying to follow the signs for Department 22, I felt my eyelids refusing to blink as fast as I wanted them to, and my feet dragging more than usual. It didn’t feel like I was in control of any of it. I made it to the right place and asked at a reception desk where the ward was – she told me to use the lift and go to the top floor. I turned around and walked in the completely opposite direction to the lifts. She called out to me and walked around the desk, putting her hand on my arm and saying she’d take me there. She smiled at me. Sweet pity was looking me dead in the face.

Once I reached the ward, I was taken into a private room immediately by two nurses. Both were extremely nice, as is standard at The Christie. Everyone who works there is always so lovely. One of them checked my blood pressure and temperature. My temperature was now at 38.2. My heart rate was at 201, which was far more concerning, but the nurse didn’t tell me that yet. She smiled and said, “I’ll be back in one minute, Daniel.” I smiled and said Ok. I’m sure she had noticed the vacant tone of my voice and the rolling of my eyes; I was actually feeling quite ill now. She came back with another device and put it on my finger – “Ok, good. The last device said your heart rate was 201 which would be very concerning. This one says it is 131. It’s still high but it’s much more manageable. I’m sure we’re making you extra nervous, too.” She wasn’t wrong. There was a lot of equipment in the room and I was suspicious of all of it. What are they going to do to me?

Drip Drip Drip

They put a needle into my port and extracted a few tubes of blood. The nurse then informed me that she also needed to take blood from my arm, as a means of trying to locate where the infection is. I knew this was going to end badly, but I also knew that there was no way of getting out of it. I didn’t say anything. She put the needle in my arm and I watched her pulling blood into a syringe. Now, I say I knew this was going to go badly because I absolutely hate doing blood tests at the best of times. My body does actually respond quite strangely when a larger amount of blood is taken, though, which is why I cannot donate blood. Also, they don’t usually extract blood from your vein using a syringe, and that in itself was making me feel queasy. Usually they use small plastic containers that they screw onto the end of the needle.

I’d seen that she had already taken quite a bit of blood from the port, and I was now watching her pulling it out of my arm. Couple that with the fact that my head was spinning and I was already feeling sick, and you get a recipe for disaster. At some point whilst she was taking the blood, she realised my arm had gone floppy. “Don’t pass out on me, Dan,” she said, “we’re nearly done.” The room was spinning and I was sweating profusely. Even my eyes were probably sweating. She finished, detached the syringe from the needle, pulled the needle out then lay me down on the bed. I couldn’t hear properly – like that part in a war film where the protagonist looks around in slow motion and sees all the destruction around them with an eerie buzz. My hearing was going and I had to shut my eyes, breathing heavy and focusing on staying awake. Then I came out with a rather unusual assessment of the situation – “I feel like someone has put a tin of beans over each ear.” I’m not sure where it came from but the nurse burst out laughing and said “that’s a new one”. I only realised how embarrassing it was once I was feeling better about 10 minutes later. “Where did that comment about tins of beans come from?” I said as she came back in to attach me to a drip. It needed to be addressed now that I was more conscious. What would a psychologist say about that? When my defences were down and my brain was at it’s most vulnerable, it chose to bring up cans of baked beans. Interesting. I even specified that the tins were used for beans; surely that detail would be irrelevant.

Anna’s Interpretation of the Tin Incident

Once I was feeling better, the nurse said to me “You probably think we’re vampires taking all of this blood from you!” Has she been reading the blog? Or can she read minds? Is that something that vampires can do? Now I have to watch what I say AND think around these bloodsuckers. What a disaster.

The next person to see me was the on shift GP. Now, I know I wasn’t completely with it, but I am 99% certain that this woman was an angel. She had the softest Irish accent I’ve ever heard and always looked deeply into your eyes as she spoke to you. Everything she said, she meant, and you felt it. I tried to focus on her questions, but I couldn’t help getting lost in her aura. Some people are so predisposed to just be be…nice. It can knock you back sometimes. She can’t always be like this, surely. Then I remembered that she become a doctor, arguably one of the most caring careers a person can pursue. It must be exhausting caring about every single person you come into contact with if you are a doctor, though. How on earth does she do it? Maybe I’m just drinking the kool aid and moments after I left the ward, she turned to the others and said “Hah – did you see how limp that wimp went when we took his blood? What a loser!” She definitely didn’t, but it makes me feel better to lie to myself that her angelical nature was a facade and that she was actually a horrible person. If I didn’t believe that, she’d make me want to become a better person. That takes time and effort. No thank you.

Dr. Angel listened to my chest, tapped around my back with her hands, inspected my body and asked me to breath deeply for her. She then sat next to me and chatted to me about all of the issues I’ve had throughout treatment, to try and establish any trends which could help identify the problem. I told her about the mouth ulcers. She shone a torch in my mouth to take a look. “Aw it looks so sore – you have signs of oral thrush. Have you been treated for it before?” I had, about 3 cycles prior. She said that she’d give me some tablets to help get rid of it. We then went down the dignified topic of diarrhoea. Talking about how many times you see blood in your poo in a typical cycle should be uncomfortable, especially when you’re talking to a real-life angel. Fortunately, it’s a topic which seems to come up every time you see an oncologist about anything. “My feet are constantly cold and numb,” you say to your oncologist one day. “That sounds awful, Daniel. Please rate how loose your stools are out of 10,” they reply, without a second of hesitation.

The doctor told me that I’m probably fighting some form of infection in the bowels, alongside some other issues like the oral thrush. She told me that they’d prescribe me antibiotics and send me on my way. I breathed a sigh of relief. The anti-biotics that the nurses had pushed directly into my veins had kicked in and I was feeling more like myself.

Dr. Angel told me that I needed to do an X-Ray of my chest just to make sure they can’t see anything worrying. The nurse walked in a few minutes later with a wheelchair. “C’mon – you’re going to help me get to my steps goal today.” This was only the second time I’d been wheeled through a hospital on a wheelchair. Knowing I was fully capable of walking, I kept offering to just walk, but she told me that she isn’t allowed to let me. There is something severley immasculating about being wheeled around when you don’t need to, as if you are conceding to some form of weakness that you insist does not exist. I decided to just sit back and enjoy the ride. It was like a fairground round and I was going into the staff only parts of the hospital. Exciting.

The scan only took a few minutes. I was then taken back up to the room. Dr. Angel came in a few minutes later and confirmed that the scan was clear. She actually described the X-Ray as ‘beautiful’. She’s definitely an angel – nothing else has the audacity to use that word in that context. Finally, I had the all clear to go home. I thought that was it for my temperature shannanigans for one day. Unfortunately, I was wrong.

After I got home, I showered, cleaned my teeth and got into bed. The rest of the afternoon was spent drifting in and out of sleep, sweating a lot and basking in the sunshine which was obnoxiously beeming into the bedroom through the window. My body was cold and hot at the same time. Perhaps it wasn’t the best idea to lay in direct sunlight for hours, especialy with the ginger genes that exist in my family (two of my siblings are ‘Strawberry Blonde’). The sun makes light work of my pasty skin. Anna and I had booked to go out to a local restaurant that evening with my parents. They were adamont that we should cancel, but I told them we should go. Walking a few hundred meters before sitting in a restaurant seemed like an easier task in my head; I couldn’t just stay in all night. I got some soup and ate it slowly. About two seonds into the main course arriving, I knew I’d made a mistake. I made a pitiful attempt at eating enough of it that it didn’t seem rude to the kitchen, then sat there trying not to fall asleep. Anna and I ended up leaving early because I was feeling too bad. When I got home, I lay in bed. Somehow, I was feeling even worse than earlier. After about 30 minutes of this, I reluctantly grabbed the thermometer and put it under my tongue. Please don’t be high. Beep. 39.1. Eugh.

I took my temperature over and over again, each time returning results around 39. It was even higher than earlier – surely that isn’t good. My mum, Anna and I then desperately started looking for the other thermometer. It’s broken, surely… Of course, it wasn’t broken. My eyes were actually burning and Anna said that heat was radiating off my body. I called the hotline. Once they picked up, I protested that it was probably nothing but that I wanted to double-check. As soon as I gave my temperature, the operator seemed concerned. “That’s quite a lot higher than earlier. I think you need to come in again.” It was around 21:30 now. Once I hung up, I lay idle on the bed for a while, wishing it would all just stop. It didn’t. We got in the car and set off, arriving at around 22:30.

The hospital was empty, as expected. Anna walked with me to Department 22. We went up in the lift together, before she was asked to leave the hospital. A familiar procedure started – blood pressure, heart rate, insert a line into my port. The nurse put her finger on my wrist to check my pulse. “You’re boiling sweety,” she said, before sticking the thermometer in my ear. “Wow, you’re temperature is 39.2. Let me get the oncologist quickly.” A youngish man, perhaps mid 30’s, walked into the shared ward and pulled the curtains around us. There were two other men on the ward. Both of them were sleeping. The room was punctuated by the occassional groan, and the sounds of restless sleep. Machines beeped, nurses giggled down the coridor and I sat wollowing in self-pity.

No surprises here, but the oncologist was a very nice guy. He wasn’t angel material, but he wasn’t far off. I think you just have to be an amazing person to dedicate yourself to the oncology profession. It is so brutal; the average person doesn’t want to be in the coal face of pain and misery every day. These people recognise the other side of that equation – how incredibly necessary their role is in fighting back against cancer, and how the people suffering from it are just crying out for a reassuring smile. Even when that smile is behind a mask. They make a huge difference, whether the story ends in tragedy or not.

He gave me two options. Option one: put me on antibiotics and monitor me overnight at the hospital. It was their preferred option because of my temperature, but he appreciated that it may not be mine. Option two: they take blood samples from me and confirm that they are ‘healthy’, meaning that this is just my body fighting the infection, and that there aren’t any indicators that my health is deteriorating. After explaining both, he smiled and said “you want option two, don’t you?” “Fuck yes,” I responded. It was probably a bit inapprorpiate but I think he appreciated the timing. He reitorated that I need to ring up if anything worsens and that they are only letting me go because I’d already been given a thorough inspection earlier, with anti-biotics issued. He said that he suspected my bloods would be fine, but also reitorated that they need to be clear or I’d have to stay.

The nurse came back in and took my bloods. She asked me if I wanted anything to drink. I treated myself to an apple juice and settled in, watching Youtube on my phone in between falling asleep. About an hour and a quarter later and the oncologist was back. “You’re good to go – the bloods are fine. You’re still fighting an infection so you are likely to have a high temperature for a few days, but we aren’t worried about it based on your vitals and the blood results.” I breathed a sigh of relief. Anna and my mum had been waiting in the car the entire time; Anna had spent as much time as I had at the hospital that day, without being allowed to be part of any of the action. It was probably worse for her, really.

Apple Head on the Ward, Waiting for the Blood Results

I made my way out of the deserted hospital, exchanging pleasantries with a random cleaner in one of the foyers. Part of me expected to see a cohort of blood nurses sitting in one of the offices as I walked past, downing pints of blood and cackling. They must have a private room in the back as I never saw them. It was so good to know that I’d be sleeping in my own bed. We got back at about 00:30 and all retreated to bed.

Any hope of cycle 12 being easy had been dashed. Luckily, I seem to be following a similar blueprint to a guy who has beat this bastard cancer. The incredible Nigel had to spend an evening in the hospital because of an infection when he was on the same chemotherapy as me. He is now 3 years clear of pancreatic cancer, something very few people can say, especially those who were diagnosed in their 70’s. Having one infection that gets you admitted to the hospital seems to be part of the winning formula for beating pancreatic cancer, so I’m choosing to take the positive from the situation. I actually got admitted twice, so I’m twice as likely to beat it now. Logic. Nigel’s daughter told me that he claimed the hospital’s thermometer was broken when they checked his temperature…it’s no wonder he beat this cancer with that sort of self-idealisation. How could my temperature be that high? I’m Nigel, don’t you know. I don’t get ill.

I’m hoping that the rest of the cycle is far less eventful. Hoping does little to change these situations, though. Better to just roll with the punches and see what happens, dealing with it when (and if) it does. Besides, the hospital’s thermometer was broken. I didn’t even have a temperature.

Waiting, Waiting…

The Road to Recovery

Mum and I Waiting to be Seen in the Oncology Office

Sometimes I wonder if purgatory is a real place. I sit and ponder over what it could be. Perhaps it’s a play area, but all of the slides are covered in hot tar that never cools down. Maybe it’s your favourite clothing store, but you don’t have any money to purchase anything, and it all looks perfect on you when you try it on. Or perhaps it is a corridor with pictures of everyone you’ve ever met hanging on the walls, but no actual humans to interact with; you spend all of your time trying to find the pictures of the ones you actually cared about, walking the endless hall and trying to remember where they’re located. My number one theory, though, is that it is a hospital waiting area where everyone seems to be seen before you. I think I may have gone there today.

The idea occurred to me today as I sat waiting at The Christie. My bloods appointment was set for 14:15, and my oncology appointment for 15:20. It is rare to have a face to face with your oncology team, and I wasn’t sure what this one was about. I knew it was probably a routine meeting, with my chemotherapy coming to an end. It didn’t stop me from pondering over it. A clinical trial that they want to put me forward for? Maybe my last blood test showed that my cancer has gone and the tumour markers are at 0 – the first case ever where the chemotherapy has completely killed the tumour. Maybe it’s spread… No, surely not. It’s probably just to tell me the potential next steps, which I think I already know. Do I know them? I probably misunderstood them but think I know them. Maybe I do need a meeting with the oncology team; it’s probably good that I’m meeting them then, I’m clearly confused.

I signed in at about 14:10. It wasn’t a receptionist I recognised. As I stated my name, date of birth and address (a standard protocol that you get used to), she looked panicked and asked me to slow down. “Can you tell that I don’t work the desk much?” She said as she frantically looked around the desk. It made me laugh and I told her not to worry. The other receptionist, the one I know well, reassured her and told her to calm down, then winked at me. I repeated the details at her request and she informed me that I was signed in. After thanking her, I awkwardly remained standing in front of her. “I’m so sorry, I’m not trying to test you, but could you also confirm if my treatment time is 9:30 on Saturday?” She rolled her eyes and smiled – “I’ll do my best.” Her best worked and she confirmed it was. I wanted to confirm as it is usually at 8:30. The detail I left out was that I’d lost my appointment card for the second time in 3 weeks, a feat I’m not proud of. My first one lasted me 4 months. I seem to be determined to challenge the hospital’s appointment card budget since then.

The waiting began. I quite like waiting at the hospital. Sometimes I treat myself by not listening to any music and observing the world around me. It’s quite soothing to sit and listen to random conversations. The next thing I know, I’m jolting myself awake with my head propped up by my palm. Apparently, eavesdropping is too soothing. I wouldn’t make a good spy. At least the seats in the waiting area have armrests – I’ve been to hospitals that have horrible little plastic chairs with nothing to fall asleep on. They’re actually quite comfortable at The Christie. I checked the time – only 30 minutes had passed. What to do next?

Anna is working down in London this week so my mum came with me. Due to covid rules, no one has been allowed to attend the hospital with me throughout the time I’ve been receiving treatment. An exception to the rule is that you are allowed to be accompanied by one person when you have face to face appointments. You are actually encouraged to bring someone with you to help support you, and so you can both process the things being said. It is useful as putting the onus on the individual with cancer can be risky business. As a patient, staying focused isn’t always easy as an oncologist sits informing you about this medical procedure that will do that to your tumour and potentially leave you with this and that problem. Sometimes you sit nodding and smiling, thinking about how much you wish the tumour would just fuck the fuck off forever. That doesn’t do you much good, though, does it? Unless the wish works, but it probably won’t.

To my surprise, the hospital seem to have caught up with the rest of the country and relaxed the rules. There is no longer a desk as you walk in, surveying the people who are trying to gain entry to the hospital. It didn’t occur to me until this moment, as I tried to stay awake in the waiting room and pondered what I could do to keep myself conscious. “Oh wait, there’s no one restricting entry to the hospital anymore. I’ll ask my mum to come and join me here!” It was a true BINGO! moment. I’m sure a lightbulb appeared above my head for a second; I hope it didn’t disturb anyone around me in the waiting area.

My mum had been sitting in a cafe across the road from the hospital. She was having a coffee with our friend Julie, the daughter of the infamous Nigel, the 75-year-old pancreatic cancer slayer. He is a mainstay in this blog and it is a mandatory requirement that I bring him up at least once in each five posts. His daughter ain’t bad too. She got me the below card today to celebrate the last chemotherapy session on Saturday. Their family are always doing thoughtful things for us and I wouldn’t have found them without the blog. It is one of its greatest achievements!

Julie’s Lovely Card to Me!

Julie and mum made their way over and appeared in the waiting room a few minutes later. We went to the M&S cafe to wait for my name to appear on the screen. They have screens in that area too but I usually don’t wait there as I have no one to drink a coffee with, so it feels a bit pointless. We sat chatting and having fun. I ate a few oranges and drank a coffee. Still, no name appeared. I was keeping busy, though, so it didn’t matter.

It only started to matter when I noticed a group of the blood nurses walk past in their pedestrian clothes and with their personal bags. “That’s strange,” I thought to myself. It was 15:40 now – over an hour past my planned blood time and 20 minutes past my oncology appointment time. I’d also noticed that no one was being called into the Bloods Offie on the screen anymore. All of the appointments were to the oncology department or The Chemotherapy Ward. “I’m going to ask at the desk and see if everything is Ok.” My mum and Julie encouraged me to do so, and off I went.

No one was waiting at the desk this time, and one of the receptionists was packing away her things. I approached the other one, a different woman from earlier, but still someone I didn’t recognise. “My blood appointment was meant to be at 14:15 but I still haven’t been called. I’m pretty sure I just saw a cohort of the blood nurses leaving. Could you check how much longer it will be?” The receptionist looked concerned. “They all go home at quarter to four. I’m not sure if any of them are still in the office.” She rang through. Luckily, one nurse was still there. The receptionist hung up the phone and started focusing on the computer. “Oh, I’m so sorry, Daniel. You weren’t checked in properly. They didn’t know you were here. Your oncology team are at least an hour behind schedule anyway so it’ll be fine,” she told me to go through to the bloods office.

The nurse was really nice. We chatted about my tattoos and, to my surprise, she guessed what the ’42’ was in reference to on my wrist (it’s a reference to Hitchhikers Guide to the Galaxy, in case you’re wondering). She also laughed at my ‘Are we compelled?’ tattoo. It is on my right arm, right below the crease above the elbow…the exact spot where these blood-suckers extract my blood from every time. “You’d think I got it after I started treatment to stick it to you guys, wouldn’t you?” She laughed. “You aren’t compelled to show up, just don’t expect to beat cancer if you don’t!” It was a good point. The blood nurses won this round, even if it does pain me to say it.

I made my way back to the cafe, cotton bud attached to my arm and a smile on my face. It’s always nice to get the blood test out of the way for another cycle. This time there isn’t another cycle… even better! Julie left us at around 17:00. We thought it couldn’t be much longer before we were seen. Mum and I decided to move to the waiting area as they often call your name before it appears on the screen when you have face to face appointments. They finally called us at about 17:45. I’d figured this trick out before, though. They call you into the consultation room to take your weight and blood pressure, then leave you there to wait longer. Tricksie, but not tricksie enough. There’s no swindling me, dear Christie hospital. When the nurse asked me if I wanted a cup of tea, I knew we were in it for the long haul. Good job I like waiting; I’m preparing for purgatory after all.

We actually didn’t have to wait very long for the oncologist to see us. Probably another 20 minutes or so. That’s the easy mode of waiting – I wait 20 minutes for things all the time. Sometimes I wait even longer. Although we didn’t learn anything new in the meeting, it was good to get some face to face time with the oncologist. You don’t get time with them very often, so it is nice to ask some questions and discuss how things are going with them. He reassured me that my case is almost definitely going to be passed over to the surgeons, but then they will have to make a decision as to whether the whole tumour can be removed (best-case scenario), or if Nano-knife will need to be used to attempt to remove the tumour instead (second best-case scenario which means that the tumour is still too close to a major artery to remove in surgery). Nano-knife is a procedure where they use two electrically charged needles to shock the tumour, hopefully killing the cells. I didn’t actually realise that nano-knife was INSTEAD of surgery – I thought it was a means of getting to surgery by killing the tumour cells near the artery. A quick Google search tells you that it can be used for either method, but that there are few recorded cases of it being used as a pre-curser for surgery. Fantastic – another opportunity to be an outlier. Bring it on.

The next steps are: do the final session of chemotherapy on Saturday, attend the CT scan on Tuesday, and then get the results of the scan two weeks later. Apparently, I’ll have a few weeks of recovery no matter what is decided as the appropriate next step. I can’t wait to be 3, 4, 5 weeks away from chemotherapy. I’m really intrigued to see how much better I feel the further away from a treatment day I get, and if I’ll see a big difference in things like my energy levels. It also feels like I can confidently make plans for the first time in a while, even if only for a month or so. It’s good to feel like I have achieved something, and Julie’s thoughtful card is what put that feeling in my brain. I’ve made it to the end of chemotherapy, and it’s gone pretty well overall.

Life is good right now. Let’s hope the scan results get me one step closer to being one of the few who actually survive this bastard cancer. And if I don’t and I end up in purgatory, I’ll be well-read in the art of waiting. Even whilst everyone around me has their name called out. Give me a coffee and an orange and I can wait forever. I wasn’t even signed in, anyway; I do this for fun.

72: A Post About Averages

The Road to Recovery

Sleeping on the Sofa with the Dogs – Typical Week 1 of the Chemotherapy Cycle

This will be my 72nd (published) post on the blog. As soon as I saw that the last one was 71, I knew what I wanted to talk about in it. 72 was not a significant number to me a year ago. My readers who are familiar with pancreatic cancer, or are good at internalising figures and have read my blog for a while, may know why 72 is a significant number now. It is the average age of diagnosis for Pancreatic Cancer victims, or I believe it is anyway. Originally I read 76, but I have since read 72 on various charity websites, so that is the one I regularly quote now.

I feel guilty for frequently using this statistic to comfort myself. “You’re much younger than the average person with this cancer, that must count for something.” It isn’t just me who says these things – I get it from doctors, nurses, friends and family. It does bring me some comfort. You have to find ways to cope under the circumstances you find yourself in. When I sit down and think about those people being diagnosed in their 60s, 70s and onwards, though, the feeling isn’t one of comfort. I feel sad. Even though it is better to be diagnosed with cancer at that age as opposed to in your 20s because you will have lived a lot more of your life, you still have a life that you want to hold on to. You likely have children you love, and you may have grandchildren you want to see grow up. It cannot be easy being diagnosed with pancreatic cancer and having to read the bleak statistics around it, knowing that you cannot find the same natural defences against these figures. The typical diagnosis is also in advanced stages – mine was locally advanced. That means that a lot of these people are also being diagnosed too late, making their chances of long term survival even slimmer. It is sickening, really. I’m not sure if locally advanced actually falls into the category of ‘advanced stages’, but I would imagine it does. I think, because of my age, the oncology team just felt that there were a lot of options for me. Perhaps there wouldn’t be so many if I was 72, I’m not sure. It still guarantees me nothing, of course. But there are no guarantees in life. We’re regularly graced with threats of nuclear war in the news right now. It isn’t a nice place to gain some perspective on my personal circumstances, but I cannot help taking some from it.

These feelings are tempered when I consider the case of Nigel, who I have spoken about on this blog a few times. His daughter contacted me through the blog and told me about his story. He was diagnosed at 71 – a year short of the average. I first spoke to him on the phone about what happened to him. He was diagnosed and given 8 months to live. After having an incredibly successful bout of chemotherapy, his tumour had reduced by 55% and the cancer, which had previously spread to his lymph nodes, had completely disappeared from them. Nigel finished his 6 months of chemotherapy treatment still believing that it was palliative, before receiving a phone call from the hospital a month later informing him that they were willing to try and operate. He’s now 3 years clear and full of beans. We’ve met up frequently and our families have become close. They’re invited to Anna and I’s wedding and I can’t wait to celebrate the day with them. Their support has been incredible and unrelenting throughout my treatment.

Nigel During His Treatment – Taken By His Lovely Wife circa 2018

His story is unusual, though. The statistics will tell you that much, although I’m not going to dig into them too deeply here. I’ve done all of that in previous posts and I’m trying not to dwell on them too much; no matter how young you are, they don’t give you a lot of hope for survival. Nigel’s story tells you that dwelling on the statistics isn’t helpful. It actually tells you that it isn’t worth dwelling on the things being said to you by the medical team too, but that is much harder to implement in my experience. If my team told me that I had 18 months, I don’t know how I’d hold myself together. But, I would have said that about any cancer diagnosis a year ago, so I actually feel confident that if something like that does happen to me, I’ll find a way through it. Especially with the support that I have around me. You quickly adjust to things – just like how we all adjusted to the ‘New Normal’ during Covid; the lockdowns, the new rules, the changes to social etiquette. We always adjust.

So, I strive on toward recovery. Not an average, not a number, not a statistic. Just another person with cancer who is trying to beat the odds, whilst trying not to dwell on those odds. My chemotherapy line will be taken out at some point today when the district nurses come round – that always makes me feel good. I finally get to shower again! Then I have one more session of chemotherapy before the big scan, which has been booked for Tuesday, May 17th. It is a bit unusual that it is booked in week 1 of the cycle – it was in week 2 last time and I thought the oncologist said that this was the most logical time to do it. I don’t mind, though. I might be feeling a little bit dodgy that early in the cycle but you get pretty good at feeling dodgy when you’re on this type of chemotherapy!

I came across an inspiring story yesterday. Of course, its origins are tragic, as they often are with pancreatic cancer. Pia Eaves was a loving wife and mother of two daughters. She died of pancreatic cancer at the young age of 54, only 11 months after being diagnosed. The Walk for Pia campaign is a challenge created by her family to raise £100,000 for Pancreatic Cancer UK running from April 20th until May 1st, yesterday. During this period, they walked 200 miles and have raised over £90,000 – an absolutely incredible feat. I am totally in awe of them. Pia was a fitness instructor and kept herself in good shape. She was also well below the average age of diagnosis for a pancreatic cancer sufferer.

It was hard for me to not relate to what I was reading as I studied the website, reading the details of her life, and the disease which ultimately brought it to a premature close. I was running ultra-marathons just weeks before I went into the hospital, where we started to establish that what was wrong with me was not going to be easily sorted. Things continued to spiral downwards from there. The PET scan and endoscopy procedures are to thank for my diagnosis. Before that, the medical team seemed sure that my issues were all caused by a cyst on my pancreas, leaving me jaundiced. I’ll never forget the look on their faces as they walked into the room to deliver the final, crushing diagnosis… pancreatic cancer… spread to the artery, but not spread outside of the pancreas… straight into treatment… need the chemotherapy to ‘take’… an extremely aggressive form of cancer… the condolences as they left the room… the cries that echoed around me… the grin on my face and the shaking of the head… How is this really happening? I still ask myself that sometimes, but less frequently now. It doesn’t matter how it is happening, it just is. There isn’t a why, there is only a what. I’m ok with it.

On that note, I’ve been looking at jobs in cancer charities that I believe I could do with my experience and skills. There are a few in data and analytics that sound appealing. It made me feel motivated and empowered, feeling like one day I could be wearing my survivor status with pride, and using it to energise myself in a role making a difference in people’s lives. People who are suffering in similar ways to the way that I have suffered, striving to survive in the way that I am. There are so many of us out there that it forms more than just a community – it is a whole section of society. It only seems to be growing in number as the field of medicine identifies more effective ways to diagnose, and is successfully doing so earlier. I’m not even sure I would have been diagnosed 30 years ago with the symptoms that I was displaying. Maybe not even 20 years ago. I think it shows that I am in a good place that I am seriously considering a long term future, and what plans it might hold for me. Hope is a valuable thing when you’re fighting a life-threatening cancer. Even when the statistics tell you that you have a 1% chance of surviving 10 years past your diagnosis, you can hope harder than anything that you are in that 1%. Let’s see what the scan says, and what the next stages of treatment will hold. It’s an exciting but scary time, but it is necessary to move things along.

I want to dedicate this post to everyone who has been affected by cancer. Whether you are grieving a loved one, a sufferer yourself or you work with people affected by it. There’s a lot of pain and suffering involved in cancer, but there’s an opposite side of the coin where it can bring out amazing things in people; raising £100,000 in memory of a lost mother, to the benefit of the thousands of people who will be diagnosed with pancreatic cancer every year. I read on the website that around 8,924 people die of pancreatic cancer every year – an average of one person every hour… yet the cancer only attracts 2.1% of the UK Cancer Research Budget, it is the 5th deadliest cancer in the UK and has the lowest survival rates of the 20 most common cancers. As a sufferer of the cancer, the biggest source of hope I have found is by speaking to people who have beaten these odds, and who continue to send me messages of positivity, encouragement and unfaltering support. They tell a different story to the statistics – one that you rarely find online. That story says that it is beatable and that there is a future beyond it.

Heartbreaker Lucy – The Ultimate Chemotherapy Companion