The Chemotherapy Diaries
It is good to have a project. Better when that project is something of your choosing, but a project is a project. This blog started off as a project and it has taken some significant steps to get it going. They weren’t significant meaning it was a very tough and arduous process, but I was trying to learn about buying a URL, hosting the blog, designing it etc when I was at my most ill. It added a layer of complexity. There was the usual lull period at the beginning where I was trying to establish how the different aspects worked. I’d read about starting a blog here and there, but was relying on getting some time with my friend who had started a blog for his design work. Eventually, one night when I was sitting awake, unable to sleep, I acknowledged that I was using this as an excuse for not learning myself. There’s little point relying on other people for knowledge that you know would benefit you if you just pulled your socks up and learnt it. Getting them to impart some of their valuable knowledge onto you can be a great thing to do, but if not being able to get their time becomes your excuse for not progressing YOUR project, you’re perhaps not being honest with yourself about what the problem really is. I know that is what was happening to me anyway. So that night I dived into domains, purchased one, purchased an email account to run the blog from, started messing around with themes and the design tool, and a few hours later I had the outlines of a blog (and no sleep for another night). A few days later, I wrote the first Road to Recovery piece and launched the blog page. I then added some of the poems I had been writing in the hospital and voila, all of a sudden I had a blog. It was real and it felt great.
Chemotherapy was an involuntary project which was every bit voluntary, but it is involuntary if you want a chance at survival. Your body has been fighting it for as long as it has existed in some way, you just haven’t been aware of it. I was forcing my poor body to train for and run ultra-marathons. It must have been sick to death of me by the time I was diagnosed; it was very much making it known by the time I finally went to the hospital, when my weight was dropping like a stock price and I couldn’t make it through a meal without excruciating abdominal pain.
During my meeting with my oncologist on Thursday, he had to reprint the form where I accepted all of the terms and conditions of treatment, and signed to agree to it. I had signed it during my first visit to The Christie but they must have sold it on eBay for an undisclosed amount of money – ‘Official Ebb & Flow Chemotherapy Form – Signed Original’. Someone probably Googled the blog and spent 50p on it, and is now praying I die and get some sort of notoriety posthumously for my cancer blog. For the record, none of this actually happened. The original had not been put into their system. There was a split second where I humoured the thought of threatening to sue them like we’re in the United States of America, but then I remembered that the care is all basically free and incredible. Reluctantly, I decided not to bite the hand that feeds. In all honesty, I’m just angry that I had to embarrass myself by showing another person my signature. It is not intelligible in the slightest and I should be far more embarrassed about it. They probably binned the first one thinking that someone had tested out whether the pen had ink in it by scribbling in the signature box.
It had been a nice few days running up to the final chemotherapy session. Anna came back from London on Friday, my best friend Luke and my amazing brother Greg have birthday’s this weekend, and there have been lots of people around to hang out with. Then the final chemotherapy session was yesterday, Saturday 14th of May! Well, the last for a while at least. I have the scan on Tuesday but won’t receive the results for two weeks. That means that there is a good window of opportunity to enjoy myself a bit and not focus on what they may say. Worrying about it won’t change them, just like hoping they are good won’t change what they are. At least it will identify what needs to happen next no matter what.
Let’s focus on some of the positives. I raised over £7,000 for Pancreatic Cancer UK, I have written a few posts for Pancreatic Cancer Action’s website, a good amount of running was done given I was on chemotherapy, no major delays in the chemotherapy cycle (although a few small ones), I had my writing published twice, and learned that my tumour had shrunk by about one third at the midway scan! I also baked the nurses 11 different cakes in total. I hate to admit it but I didn’t take one for the first session; it was before I started baking often and I was too scared to think about anything other than making it to the hospital and getting through whatever this chemotherapy thing threw at me. The start was rocky…
As I sat on the bathroom floor in the shower on the morning of the first session, I started to cry, anticipating what the chemotherapy was going to consist of. The oncology team had warned me that they would expect someone to be in bed about half of the time due to exhaustion. That’s twelve hours a day. It sounded like a lot and was worrying me. To make it worse, Google didn’t give me a lot of hope that the chemotherapy would do what I needed it to. Neither did the Pancreatic Cancer booklets that were handed to me after the diagnosis in the hospital in London. As I’d sat there struggling to sleep in the hospital room, I had decided to indulge in the ‘Pancreatic Diet and Enzymes’ booklet. It sounded the least risky; I was quickly proven wrong. One of the first things I read as I opened up the booklet was ‘In a small number of cases, the chemotherapy will successfully shrink the tumour.’ Well, that wasn’t what I wanted to read at that moment. It was never going to start well after that.
The first session was tough, there’s no doubt about that. It is also the one where you get an induction from the nurse and she tells you every detail of the chemotherapy; what it is likely to do to you, how bad it is for your body, all of the foods that you need to avoid, things to look out for that are definite emergencies, other things that are likely to be emergencies and finally, how some of the negative side-effects may last forever. The last point is referring to where you suffer from nerve-ending damage. When this does happen, the feeling in that part of your body rarely comes back. It has happened in my toes. If you touch the very end of them, I can only feel a weird sensation. The chemotherapy has also affected my taste and I struggle to fully taste food at the minute. I’m hoping that one subsides, pronto. What is the point in baking delicious cakes if you cannot even taste them? Oh right, it’s because your dad is addicted to cake and needs at least 5 slices before breakfast to ease himself into the day. If only I was exaggerating. For me, though, it isn’t worth the calories in the butter alone, and the five Creon tablets I have to take to break down the single slither of cake just put me off even more. I’m kidding, it totally is; that would be a damning review of my own baking to claim that it wasn’t worth the calories.
I heard the nurse inducting a man yesterday. He was sitting on the chair next to me so I heard every word – more eavesdropping at the hospital, I know. I really need to get a life, or watch more daytime TV if I’m this interested in other people’s lives. At least on TV programmes, people are choosing to put their personal lives out into the world voluntarily. When Anna and I were staying in Whitby, there was a book on the Kardashians on the shelf. I started reading it to see what this book could possibly be about but I got hooked pretty quickly. Their descendants were poor Armenians. The book covered these ancestors and how they moved to the west coast of America due to a prophecy foretold by a local man who claimed to see the future. A number of the village left within the next decade, and the remaining ones thought they were crazy believing this man. There was then some form of invasion from a neighbouring country, and the remaining people of their village in Armenia were killed in the attack. Not only had they avoided death, but they had moved to an area in America which was about to experience a boom. The building of dams in California meant that the area could be inhabited much easier. They made their lives there when it was tough (and cheap), but were there to reap the benefits as it became more and more popular, with Hollywood becoming the new epicentre for film. They started various businesses, which were extremely successful, and that is how her family started to accumulate wealth. One of them was a garbage collection business – I believe this was the first which was very lucrative, but I can’t remember exactly. SEE – I told you it was interesting! They know how to get you those Kardashians. I’m sure they approved the book before its release. I stopped again and we went out walking before I spent the rest of the weekend speedrunning the book.
Anyway, I was listening to the induction that the nurse was giving to the new patient. It is very interesting listening to it again when you are at the end of your treatment. You have such a different perspective on it all. Julie, a family friend, says that “you wouldn’t take paracetamol if you read the little booklet that came in the packet.” She’s so right. In the US, where Big Pharma actually advertise a lot of drugs to try and increase their sales, they list all of the side effects very quickly and comically at the end of the advert, usually with some montage in the background. It is like satire from a British show mocking advertising. The whole thing is very unusual when you are used to UK adverts.
As I sat listening to the nurse discuss some of the more harrowing side-effects I’ve heard, I couldn’t help but smile to myself. I was finally at the end, and none of it got too bad. It felt good, even if it is horrible to think that this must have happened to someone to be listed.
It is hard to feel overly positive about making my way through the chemotherapy when I have just learnt of another story which is extremely sad involving the same treatment. An incredibly supportive follower of the blog sent me a direct message on Twitter a few days ago, telling me that a family member who was critically ill with pancreatic cancer had very sadly passed away after only four sessions of treatment. Although I do not know them personally, the message was very moving and I could feel their pain, even if I could never know just how awful it must be coping with that pain right now. The harsh reality of cancer sinks in quickly sometimes; even the treatment is harrowing and causes a great amount of stress on the body and mind. It alone is sometimes responsible for the downfall of the individual. It makes me less ready to celebrate any victory I’ve had against the chemotherapy as it seems disrespectful. You have to find a way to enjoy these moments, though, as they do represent a real victory in a struggle which takes it’s toll on you. When a cycle is going well, you feel on top of the world. It makes you forget how potent these drugs are and what they are designed to do to your body. The brutal reminders come when you get a new symptom, or an existing one seems to worsen. Fear, anxiety and foreboding quickly dominate your every thought. “What if the cancer has spread?”, “what if the chemotherapy is leaking into my body?”, “why have I started shitting blood, does that mean that things have gotten worse?”. The mind can be relentless; you can’t shut off your brain.
But here I am, I have completed the initial twelve sessions of chemotherapy. It does feel good. Since Friday, I have been experiencing a new type of pain in an area just above my belly button. I keep worrying about it, fearing that it may be a spread to the stomach. I know that the cancer tends to spread more to the organs around it in the digestive system, with the most common spread to the liver (I believe). The pain seemed to subside when I ate. It is a bit unusual, but I don’t think it actually represents much of a threat. If it continues, I’ll call the hotline and get some advice from them. Guess where I won’t be going again? To Leighton Hospital. No way… I’ll take the hour drive to The Christie, thank you. Once you find a hospital you trust and a team that have your best interests at heart, stick with them. That has been my experience so far. Whenever I have attempted to go to another hospital to save time, I have ended up frustrated and more worried.
The only other advice I can think of that is fairly new is in regard to mouth ulcers. It has been the killer symptom for me, getting so bad at one point that I stayed in bed for almost three days, struggling to talk or eat. The Difflam mouthwash provided by the hospital is good but mine stated on it to use a maximum of four times a day. Ignore that – it can be taken every 2 hours. I don’t use Bonjela as it doesn’t cling to the ulcers well. Iglu is much better. You need to dry the site of the ulcer using kitchen paper before you try to apply it. The gel goes hard and creates a layer over the ulcer, but it sticks much better when the area is dry. Once it is dried and you have applied the Iglu, fan it with your hand to make sure the gel hardens. It then provides a layer of protection which stops them getting irritated and also helps to heal them up. That method was by far the most effective. Then, stay away from any food with spice in it. I absolutely love spicey food so I would continually try to still make meals with similar levels of spice in them, but it isn’t worth it. Your tongue feels like it is on fire for at best 30 minutes after eating. Also, get SLS-free toothpaste. It tastes gross (mine tastes like anise, which reminds me of doing shots at university) but it makes such a huge difference. Normal toothpaste has a similar effect to chilli and can really irritate the ulcers.
Also, I know it is incredibly annoying always being told to stay hydrated, but it makes a huge difference when on chemotherapy. Forcing yourself to hydrate and get out of the house once a day is really important. I’d go easy on myself for the few days if I was feeling particularly tired, but there always has to come a point where you take the plunge and become more active in a cycle. The ones where I have been proactive about doing this have usually been my best cycles. Sleeping and lounging around is extremely beneficial in the right measures, but can be a double edged sword for both your mental and physical health if you allow yourself to become complacent and stop trying to get up. Even better, get a little sausage dog puppy that loves walking so you have a positive reason to leave the house most days. You won’t regret it. They love cuddles too.
So, I’m not sure what will become of the chemotherapy cycles posts from here out. I’ll do a final update next week to see how the chemotherapy is measuring out, then I’ll do another one in a few weeks to update on how well I am feeling the further away from a treatment day I get. Other than that, the next time I’m talking about chemotherapy may be in the context of mop up chemo. Perhaps it is too hopeful and optimistic to claim that, but why not have some hope under these circumstances. The oncologist seemed assured that the MDT will be reviewing it after the scan and handing over to the surgeons as they believe I am at a point where something can be done to progress this further… lets see what the next scan says and hope for the best.
I’ve thoroughly enjoyed writing this series and I think it is probably the most consistent one I have made. The Road to Diagnosis series was exciting as it was real and contained twists and turns, but that had all happened by the time I started the blog. The Road to Recovery is a slow burner for updates, but perhaps it will increase again now I am out of the chemotherapy bubble. For some reason, I always found this series the easiest to write for. I naturally found things around me to talk about, as if the series made me more cognizant of events taking place around me. I’d soak them in then think about how I’d write about them, and how they would compliment my overarching point within the post. It is nice when you find stories and poetry in the world around you – the ringing of a bell on the ward as someone celebrates beating their cancer, a man pacing outside the hospital and smoking after sitting next to me in the treatment ward looking incredibly ill, and the countless conversations with the nurses.
At the end of my twelth session, the nurse went to the kitchen and divided out the cake I baked them onto individual plastic plates. She then walked around the ward offering the remaining slices out to all of the patients. It was a really lovely moment, and I hadn’t seen them do it before. Various people receiving treatment were shouting over to me complimenting the cake. Some of them had tried other ones before as the nurses had offered them a slice when I had left. “Are you the guy that made the cappucinno cake?” one woman asked me. “Yeah, I was actually. How did you know that?” I responded, actually feeling quite charmed by it. “I’ve seen you with a cake every time you’ve been here at the same time as me. They’re really lovely. What a great idea!” It was so lovely of her to say. I then stood at my chair packing up my stuff and talking to her. She had an operation to remove her tumour a few months before, and was now on mop up chemo. The cancer had spread in her case, but it seemed as though they had controlled it, despite having a recent scare of it spreading to her bowel. I didn’t ask her what cancer she was originally diagnosed with – it feels too personal to ask straight out of the gate. She then asked about mine, and was surprised to hear that I was inoperable. “You seem like a fighter – that’s the most important part of fighting a cancer. Just keep going, that’s all you can do, love.” Her words echoed with me. I thanked her and wished her well with the end of her treatment, telling her that I hoped I wouldn’t see her around the hospital again, as she only had 2 weeks left on chemotherapy before she should be clear. She understood what I meant, but laughed at the (lack of) sentiment. “I’ll keep an eye out for you,” she said. I gave her a coy smile before thanking the nursing team who were looking after me that day.
A weight felt like it dropped from my shoulders as I made my way down the stairs to go and meet my mum and Anna. I’ve actually done it… I made it through all twelve sessions of the chemotherapy. Onto the next thing, no matter how scary it may be!