Failing the Blood Test

The Chemotherapy Diaries

Me and Lila, My Mum’s New Puppy

Last Monday, I read a victim story posted by Pancreatic Cancer Action on Twitter. I try to read them when I see them, as I’ve written for the charity a few times, and they generously shared my story on their website before. It feels like a tit-for-tat situation – people read my story, so I want to do the same in return. What I read that day instilled the fear of god in me, though, and it continues to haunt me.

There are a few things that are creepy about the story. Firstly, the subject’s name is Daniel. Who else is called Daniel? You guessed it – ME! Daniel was also very young to be diagnosed with pancreatic cancer, being only 37 years old. His diagnosis was stage 2, and he was able to go straight for surgery, something which I wasn’t able to do. On the day of his surgery, however, he failed the mandatory Covid test, and his operation had to be delayed. When they finally performed the operation, they opened him up to find that it had actually spread to an artery, like mine had. The surgeon thought in his feet and managed to get the whole tumour out, with good margins, by performing a total pancreatectomy. Who had a total pancreatectomy, and had their tumour removed with good margins? You guessed it – this guy writing the blog! Hopefully, you’re 2 for 2 in the Ebb and Flow quiz today.

So far, so good. These stories are always hard to read, especially when you have pancreatic cancer yourself, but there wasn’t anything abnormal about this story yet. I was reading the story and thinking about all of those pivotal moments in my journey so far – the horrific news of the diagnosis, the anticipation before the surgery, and the elation upon hearing that the tumour had been removed with good margins. Then, I started to read some information which I couldn’t tether to my personal experiences so far…

Daniel started a regime of mop-up chemotherapy. Can you guess what regime he was following? You might be able to… he was on the exact same chemotherapy routine as the one I find myself on. Can you see a theme emerging?

Four cycles into his treatment, he became very ill and began projectile vomiting. After going to A&E, he learnt that his cancer had returned, was now in the bile duct and stomach, and was essentially out of control. Daniel was moved to palliative care. Despite being given only days to live, he managed to fight on, with the oncology team eventually deciding to put him on further chemotherapy after he miraculously started holding food down again. Unfortunately, after 3 further cycles of the new treatment, his tumour markers flared up again, and the decision was made to stop.

On June 5th 2022, my wife’s birthday, he passed away.

The story is tragic by anyone’s standards, but it hit me differently. So many things jumped out of the page at me. I tried to process what I had read alone. It didn’t work. I mentioned it to my mum, and she immediately broke into tears. I sent it to my wife, who was working down in London; she didn’t speak to me for hours, before ringing me and telling me that it had really affected her. I felt terrible, yet it stayed on my mind.

I’d written myself into the tale… Whilst recovering from surgery, I had to go into A&E after projectile vomiting for about two hours, but it turned out to be an issue with my bowel. What if that had been a spread? I’d broken down in tears in the hospital at the mere thought that it could be; I can’t imagine how I would have responded if it had materialised to be true. As I sat there processing what I had read, I imagined receiving the news that Daniel had at the hospital when he had gone into A&E. I’m not sure if it is how the article is written, or if I can just relate to it incredibly well, but the whole thing emanated pain and struggle to me. I was living it.

Then I thought about my treatment days. The main thing that keeps you positive about attending chemotherapy is the knowledge that it is the primary device you have in fighting your cancer. I hadn’t given much thought to the idea that you could show up to a chemotherapy session, only to be told that your blood results have shown a spike in the tumour markers and that you’ll be moved to palliative care. Of course, I knew something like that was technically possible, but I assumed that it was such a rarity, it was almost not worth worrying about. Now I was picturing myself walking into the chemotherapy ward, greeting the nurses with a smile and making some inane chit-chat about it being cold outside, only to be met with those eyes that I’d seen before my diagnosis. People steel themselves when they’re delivering life-changing information – it is palpable before a single word leaves their mouth; you know something is wrong. “Your markers aren’t good, Daniel. The team is deciding what the best course of action is, but for now, your treatment is on pause.” I was writing the script and everything. It felt like it was really happening to me. My sleep was laboured that night. I’m still struggling to shake it all off.

The next day I was due to have treatment at 14:00. At around midday, my phone started to vibrate. I looked at the screen and saw ‘No Called ID’. The hospital. I took a deep breath in and wondered why they would be calling me. I’d done bloods the day before. My mind was already hypothesising.

“Hey,” I said, nervously.”

“Hi, Daniel. It’s The Christie here. I’m sorry to tell you so late, but your liver functioning is extremely high. I can’t get hold of the oncology team at the minute, but I’m sure they’re going to tell me to delay your treatment by a week.”

This had happened to me before. I hadn’t thought anything of it last time. My liver is a busy body at the minute – trying to process all of the chemotherapy drugs (and the odd beer I have when I decide to ‘treat’ myself). Things weren’t the same this time, though. After reading Daniel’s story, I was prepared for a disaster. It was happening.

“What does that mean? Could it have spread?” I asked.

I honestly can’t remember what the nurse responded to me, but she wasn’t shocked by the question. She reassured me that it is very unlikely to be and that my liver likely just needs a break from the drugs. She then had the presence of mind and heart to ask me why that had been the first thing that occurred to me. I explained the story I had read the night before. She sighed and made a light-hearted joke.

“I hope your mum and wife have banned you from the internet for a few days.”

She told me that the nurses were all there for me, that I could ring them whenever I needed to, and that I need to stay positive. It was helpful to hear those words, but I’d be lying if I said it resolved the issue. It didn’t. I spent the rest of the week feeling incredibly conscious of every abdominal pain, fantasising about it until it grew out of control. I didn’t need a scan or a doctor; it had spread. I knew it as a fact.

I’ve managed to settle down a bit since last week. Today I had treatment again. Apparently, my liver functioning is still high, but it is within the permissible limit. The thing that is still bothering me is how ill I seem to feel all of the time. This morning, after a week off the drugs, I was feeling better than I have been. I managed to have a solid morning of work where I finished a few things that had been hanging over my head. Treatment was at 14:00, and after about 10 minutes of being hooked up to the line, I started feeling notably worse again. Now, I feel tired and sick, and the nerves are starting to come back.

For some reason, one of the first things I thought about when I got home was how happy my dog Lucy is every time she sees me. It then occurred to me that if I did die, she’d never be able to understand what had happened to me. In my mind, she would forever think I’d left her and would be expecting the next knock at the door to be me back. Maybe I’m dramatising it too much. Maybe she wouldn’t even remember me after a few months. The feeling that she would always be waiting for me to return feels harder to process in some ways than my own family dealing with my death. At least they understand that this is all part of life and that someday the same will happen to them. I doubt a dog is aware of such things. It is all just a stupid, morbid thought anyway, but it is upsetting nonetheless.

I’m really not sure if it is because of the article I read, or if I’m just in that sort of mood at the minute. It frequently feels like life is just happening to me at this minute; as if I am not an agent in its happening. I feel myself getting frustrated at things that wouldn’t usually bother me, and I’m spending a lot of time being annoyed at myself for not being more present, or for not managing to enjoy things as much as I want to.

Two of my close friends have recently raised the subject of Survivor’s Guilt with me. After talking to them about the way I’ve been feeling, they both responded with the same thing independently of each other. Perhaps I am experiencing a bit of Survivor’s Guilt, but at the same time, I don’t classify myself as a survivor yet. Things are still very early on, and as Daniel’s story showed, a couple of months don’t mean that much when pancreatic cancer is involved. There probably is an element of it in play, though. It isn’t nice to read about someone’s story that is so similar to yours but with the worst outcome possible. One side of me selfishly doesn’t like it because it opens up that reality as a realm of possibility for my own fate, but it is also because I can relate to so much of the story. I’ve been in many of those positions spoken about, and I know how it felt to be there. The faces of my loved ones wet with tears; the sternness of the diagnosis. That feeling of utter helplessness when the reality sets in that your future feels more uncertain than ever before. It’s horrible.

But the tedious trip through chemotherapy drags on, and I’m grateful that it does. In spite of all of my negativity at the minute, I am managing to gain some useful perspective on my situation. I’m still plodding along; I’m still planning on moving back to London in a few months, so I must have some faith in the likelihood of me surviving this thing a little longer. My amazing friend Dee told me that I was probably in survival mode last year, which would have been helping me kick on in the hard times. I think there is truth in that. This time everything feels like a chore, and I just want to be rid of the entire experience. It was almost a relief to find out that my liver functioning was bad in some ways, as I thought the sickness was all in my head for a week or so. Now I just need that poor liver functioning to not result in some kind of spread of the cancer. I’m not drinking beer during the World Cup games, and I’m trying to eat as well as I can when I feel like eating… how much more can I give? I already hate every pancreas in the world, don’t make me start hating livers too.

Losing Hair

The Chemotherapy Diaries

Me and My Brothers in Primary School – Me, Freddie, Alfie and Greg (L to R). The Last Time I Had a Full Head of Hair

It feels like I haven’t written a lot for this series of late. I’m not sure why because I can’t see an obvious drop in momentum looking at the post dates. Perhaps it reflects the feeling that I have about me posting less on the blog generally, which I know to be true. I’m trying to cut myself a bit of slack, though. Making fewer posts but making them more interesting is better – right? I think so. Claiming that they’re more interesting is subjective I guess. I’m not even sure I believe that; it isn’t like I read back on my old posts regularly. My post dedicated to my good friend Drew Jones has been gaining a lot of attention these past few days according to the stats. I keep checking the news to see if he has been involved in a public scandal or something. I haven’t seen such news yet. Maybe it really is just sublime writing combined with a great character, a dangerous duo. Onto the topic at hand – hair loss.

I’m used to having very little hair. My hairline started to recede around the same time that I started puberty (not too far from the truth, but still mostly a joke). It was probably more like 16 or 17. I used to be extremely self-conscious about it. How couldn’t I be? No one wants their hairline to be very clearly receding before they have even made it out of their teenage years. I hadn’t even made it out of school yet. The self-consciousness was quite veiled and I think I mostly took the situation on the chin. There was no alternative – hats made me look stupid and I didn’t fancy maintaining a mohawk haircut. Various people had made the joke about my hairline looking like the McDonald’s M by the time I was about 21. It’s even more insulting as I truly dislike McDonald’s food. Every time I get convinced by someone to go, I end up with the same issue – I leave hungry yet feeling incredibly sick. The food is so terrible. The only thing on the menu worth considering is the McFlurry and they even rotate the flavours of that, meaning you find one you like and then they take it away. Perhaps I’m just bitter because of my hairline. At least no one makes that joke anymore (to my face); it’s probably receded too far for it to be funny anymore.

So I’m no stranger to hair loss. That being said, I am a stranger to the hair loss that I am currently experiencing. As I sat there in some shorts a few nights ago, I realised that there were incredibly smooth patches on the back of my legs. To my surprise, I started noticing them all over the top of my thighs too. My hair is quite light in colour so it isn’t very pronounced, but if you look closely you can see hair of all different lengths as you survey my legs. In some areas, it has completely disappeared, and in others it is just turning into stubble. I started noticing that a similar thing is happening to my arms too. Now I’ve noticed it, I can’t stop looking at how randomly it seems to have occurred. No rhyme or reason to where the hair has vanished and where it looks the same as it did before. As usual, I’m looking for a pattern that explains it – a way of understanding something that is probably just random. I do it about the cancer and now I’m doing it about the loss of hair.

It is almost vindicating to know that I have experienced some hair loss during chemotherapy. For the majority of people who have never experienced treatment, it is probably the most quotable symptom of it. I’m assuming if you surveyed a random 100 people and asked them what negative effect chemotherapy has on your body, they would say hair loss. It is part of the image conjured up in the media. A person with ghost-white skin and no hair, attached to a machine and hanging onto life by the skin of their teeth. I’m sure this is some people’s experience, and I don’t mean to downplay how awful it must be if it is. There’s another side to the story, though, and it is this side that dominates the wards I sit on during my treatment. It is mostly normal looking people, dressed in the same clothes they’d probably go to the shops in, trying to avoid eye contact, likely worried that it is considered prying under the circumstances. Sometimes you see someone who looks more ill and you feel sympathetic towards them – but they usually smile back if you catch their eye. Most people don’t want sympathy. They’re probably sick of the world looking at them as a wounded animal. People are much stronger than they appear. My dad says it about my mum. She is the most loving and sensitive woman I know, but I’ve seen her be incredibly strong. I remember being at the hospital with her visiting my grandad just before he died. He was asking where Jessie was (his late wife and my grandma), and kept thinking that he was in the bedroom of their house. “Is Jessie going to bring my tea up?” he asked over and over again. It was hard to be around; I can’t imagine how hard it was for my mum… but she had to leave the hospital that day, likely to make a meal for 6 ungrateful children, before tackling more of the endless washing pile that never got smaller. Life goes on. We all understand that, even if we don’t like it.

A few days ago I received a letter from The Job Centre stating that my last sick note ran out at the end of April. It informed me that until I get a new one from my GP, they cannot process my request for Employment and Support Allowance (ESA). To continue with the story, we need to cover some fairly boring informational stuff. Bear with me.

When you are on long term sick in the UK, the employer is obliged to pay you Statutory Sick Pay (SSA) for 28 weeks. Once this period is up, you have to apply for ESA directly with the government. The process is then managed by The Job Centre. You are requested to have regular meetings with a Careers Advisor. It is strange considering I am technically in full-time employment, but have too much cancer/chemotherapy to deal with to allow me to work. You do feel a little like you’re under investigation… but that’s because you are. There will be people who try and abuse the system, though, so it is necessary. The careers advisor I spoke to is a very lovely person who took away a lot of the feeling that I was doing something wrong, so that made up for any negativity I felt from the letters.

I contacted my oncology team and requested another sick note as soon as I read the letter. My original one was issued by King’s hospital when I was diagnosed with cancer. Other than this, I’ve never needed a sick note in my life so I’m not familiar with the process. They responded in the afternoon stating it is my GP’s responsibility to issue sick notes. Fine. I decided to just walk down to my GP as I had emailed two weeks ago about a few things but hadn’t heard anything back. I’m feeling pretty good right now so why not sort out some wonderful admin. Is there anything more sexy than a little bit of cancer admin? There definitely is – anything.

As I stood waiting in the queue to speak to the receptionist, a woman joined it behind me. To my surprise, I heard a voice say “Got toothache do you?” I turned and realised she was talking to me, before then realising that I was standing with my right arm folded across my stomach, and the other elbow resting on it, with my palm resting under my chin and hand across my cheek. I laughed and said “Nope… No… No.” I used to have a bit of wit about me but I’ve struggled more with social interaction since starting chemotherapy, I’m not sure why. She then said, “…because I was going to say that you’re in the wrong place.” She clearly didn’t want to waste a punchline that good. I couldn’t tell if it was a passive-aggressive way of trying to get one person closer to the reception or if she was trying to be friendly. I nodded and laughed a bit and then turned around. We didn’t talk again.

It took about 10 minutes before I was at the front of the queue. As I approached the desk, I explained that I was undergoing chemotherapy treatment at The Christie for pancreatic cancer and that I had an issue with my sick notes. The very lovely receptionist smiled and asked me to wait a minute whilst she speaks to her colleague, before popping her head into a back room. She then told me to go around the corner to resolve my issue, as it was considered ‘private’ – a very lovely gesture indeed. They resolved my issue quickly and I had my sick note about 5 minutes later. It was a great success.

As I was leaving the surgery, I saw the woman who made the joke about my tooth. I think she overheard that I had cancer and was on chemotherapy, as her demeanour was totally different towards me. She looked at me wide-eyed and gave me a half-smile that felt sympathetic. I smiled and told her to enjoy the rest of her day. She said, “take care”. I’ve perhaps created a story out of this in my head, but I’m not sure. I felt the sympathy, though. I understand the sympathy to an extent – I feel sympathy for anyone who tells me they are suffering from, or know someone who is suffering from cancer. It is especially so when they are particularly young or they have a particularly bad diagnosis. I guess I fall into the ‘particularly young’ category for some people. It made me think about what a ‘cancer patient’ really looks like. I’m constantly being told that I look great given what is going on, which is a lovely compliment to receive. I don’t always feel great, though. In fact, sometimes I feel absolutely horrific. And people seem to conflate looking good to how your battle with the cancer is going – something which will correlate to an extent but doesn’t hold weight in a lot of cases. I may have been running ultra marathons with cancer for over a year. That’s how long I was displaying symptoms of something, not understanding what it was. No one ever commented on how good I looked then!

The point is that cancer can impact any of us, and it isn’t easy to identify someone who has cancer simply by looking at them. We don’t walk around hooked up to a chemotherapy machine, holding a mop bucket in case we throw up at any time. I follow a lot of accounts on Twitter of people with a terminal diagnosis who run marathons, cycle one hundred mile races and push their bodies to extremes. Usually, they are raising money for charities like Children with Cancer and posting selfless messages of positivity and hope, which brings me to the final part of the post.

If you are in the UK, you have likely read the name Deborah James in the news over the past few days. She is the host of a podcast called You, Me and the Big C, a podcast where the hosts speak candidly about their experience with cancer. The founder of the podcast, Rachael Bland, died in 2018 after a 2 year battle with cancer, only 6 months after the podcast was started. Unfortunately, Deborah James has announced that she is now on hospice care and is preparing to die. She wrote the below on Twitter.

I tried to read her final column for The Sun, but I couldn’t get through it. I wish I could, and I will eventually, but it is too much for me to manage right now. The details of decline and descriptions of ill-health towards the end of a life ruined by cancer create too vivid a picture for me. I hate to say it because I feel selfish for not persevering through someone’s written experience of something that is actually happening to them right now. Me reading it is nothing compared to them dealing with it. My issue is that I still do not understand what the actual dying part of cancer is like. I’ve never really understood what is the final thing that kills you; I know that it will be different for different people, but I’ve often pondered with morbid curiosity over what the dying phase actually looks like. Not because I want to know, but because I am scared to know. Deborah has addressed these things too well in her writing, and I just can’t read it without feeling terrified to my core of it happening to me. Death isn’t something that scares me, but the process of getting there is hard to fathom. You find yourself hoping that when it happens to you, it is a quick decline for both you and your family. I wanted to pull out the following quotes from the article:

“I do not want to die – I can’t get my head around the idea that I will not see my kids’ weddings or see them grow up – that I will no longer be a part of life that I love so much. 

I am not brave – I am not dignified going towards my death – I am simply a scared girl who is doing something she has no choice in but I know I am grateful for the life that I have had.

What an incredibly humble and moving way to summarise the destructive nature of cancer, and how its victims are left to simply observe as they deteriorate, to the detriment of themselves and the loved ones around them. I read that she was running 5K’s every day recently, and now cannot walk. It makes me resent this image of cancer sufferers as people who cannot strive to live a normal life, keeping physically active and doing what they can to keep themselves feeling as well as they can under the circumstances. People seem surprised to learn that I am trying to run whilst on chemotherapy. Sometimes I think people believe it must mean that treatment is easy for me, or that my body is naturally set up to cope with it. This last month has been extremely hard for me on chemotherapy and I’ve struggled to do a lot. It showed me that things can change quickly, and the state of your health is never as out of your hands as it is with a cancer diagnosis. You feel impotent in the face of it, so strive to control the things you can – keeping yourself fit, spending your time doing things you enjoy and staying as positive as you can. Every second you spend feeling any other way is wasted because you’re more cognizant of how valuable those seconds are, and you want to spend them making a positive impression on the world. No one has done that more than ‘Bowel Babe’ Deborah James, who has raised millions of pounds for Cancer Research UK and used her platform to educate, support and humour the masses.

I wish I had a positive way to finish the post, but I’m struggling to muster anything of substance. Deborah’s beautiful words just remind me what a dark, insipid beast cancer is for taking such a wonderful person away from her family, friends and followers at such a young age. I hope her final weeks are spent full of love and support and wish her family well.