How Much Do I Share?

The Chemotherapy Diaries

There are some new challenges of chemotherapy seeping in. I assumed (perhaps naively) that I would understand the lay of the land by session 4 and that the difficulties would be mostly known in my treatment routine. It had even occurred to me that I might run out of things to write about… that is proving to be a preposterous thought. It’s becoming a game of ‘How much do I share?’ as more distressing and frankly disgusting symptoms start bearing their ugly head.

A reality of pancreatic cancer is that you have to get used to discussing some pretty unsavoury topics. I am referring specifically to toilet habits. Your stools are some of the best identifiers that you have pancreatic cancer. A primary function of your pancreas is to create enzymes that help break down fat in your food. When you have something inhibiting the functioning of your pancreas, such as a cancerous tumour, it will stop producing enough of these enzymes. The result is that you cannot digest fat easily, and your stools may float and/or appear a bleached colour. Originally, processing fats was only mildly uncomfortable for me, and I would have a similar feeling to indigestion as I lay in bed at night, which would remain until I got out of bed in the morning. It then became extreme after about a year of mild symptoms, which eventually led me to A&E. Of course, I did not realise that this was the problem at the time, I thought it was a mild food allergy or something.

I can’t remember when I first got asked the question ‘Do your stools float in the toilet bowl?’ by a doctor, but their foresight was bang on. I had not noticed until the question had been put to me, though. I didn’t tend to spend too much time studying the toilet bowl, surprisingly. Knowing these symptoms can ultimately be the difference between life and death, though. The earlier you can identify a cancer in your system, the better your chance at survival. It is especially true of pancreatic cancer, so I thought it worth mentioning here. The below post from Pancreatic Cancer Action details the main symptoms of the Less Survivable Cancers group. They’re worth knowing – I am an example of someone who was blindsided by a diagnosis and could have benefited from understanding these symptoms far earlier than I did. I only became aware of them after my diagnosis.

Back to chemotherapy treatment cycle number 4. At the beginning of your treatment days, the nurses ask you a series of questions that they then numerically rate based on your answer. “Have you had any diarrhoea?” For the first 2 cycles, I gave a confident and smug “No!” By cycle 3, it was a meek “a little bit on day 7,” which is my off weekend Saturday. When I get posed the question on Saturday about cycle 4, I am not sure where I’ll start, really.

For the first 6 days, everything was pretty good. I had to convince myself to not run on the first Tuesday after treatment. While walking the dog with my mum, I was boasting about how good I felt. My little puppy Lucy was running after me as I jogged ahead. The oncologist’s words were sitting heavy in my mind, though – “Don’t do strenuous exercise in the first 7 days of treatment. Your body has enough to deal with processing the chemotherapy drugs, and you don’t want to give yourself chronic fatigue.” The little jogging game with Lucy was as far as I should push it, I thought, secretly plotting to run at this stage in cycle 5 if I felt this good.

Thursday rolled around, and I had the session with Pancreatic Cancer UK. The session was on Pancreatic Enzymes and Diet. In the ‘Adjusting to Life With a Less Survivable Cancer‘ post, I spoke a little about it. As I mentioned in the introduction, the pancreas does not function normally when suffering from some form of ailment. To supplement the suffering pancreas, Creon is prescribed to take with meals, food and fatty drinks, like those with milk in. This tablet contains pancreatic enzymes to help your body break down the fat. You take these tablets with every meal, eating them at regular intervals to ensure a distribution of the enzymes throughout the digestion process. We’re conditioned to think taking large amounts of pills is bad because it is with things like paracetamol. Creon is a different beast. I probably consume approximately 25 of these pills a day. You really do have to swallow them constantly when digesting something containing fat. There was a rather comical moment on the call where another attendee started listing foods one by one and asking if he needed to eat Creon with them. “I like to eat half a chocolate bar in the middle of the day sometimes. Do I need to take Creon with that?” He asked. The nurse politely repeated what she had already said many times, in many ways, that they must be taken wherever fat needs to be digested. “What about a packet of crisps?” he followed up. It was rather comical, but I was trying to hold my composure on camera. I really wanted him to start listing all the foods he likes to eat individually, but he stopped there. Shame.

Perhaps I boasted too much on the call with Pancreatic Cancer UK that the chemotherapy was going well, that my symptoms weren’t proving to be too bad. “My diet hasn’t even been impacted. I’m eating as normal generally,” I boasted, not realising fate was being baited right behind my back. It was ready to strike.

Friday, the diarrhoea started and didn’t really stop. There was blood by the end of the day, and I was on the phone to the chemotherapy hotline. I know this is disgusting, but it’s just the reality of chemotherapy, unfortunately. I spent most of the day in bed. It really was exhausting dealing with this stuff, and I felt terrible. On top of feeling drained, I felt uncomfortable in my own skin. It all came out as my fiance sat talking to her mum Kathy on the phone. It is strange how many times I have bared my soul on FaceTime to Kathy; I’m not sure why that scenario is the catalyst for me to do so. After my endoscopy, the true extent of the trauma only came out later in the day when Kathy asked me on Facetime how I was doing. Before that, I had been a closed box to Anna and my mum – only skimming over the horrific details.

“I just don’t know what will happen. I can’t confidently say I’ll be alive in 5 years, and what will I have gone through if I am. All of a sudden, I don’t feel like I can plan for any future.” The words were flowing. I didn’t even realise they were bouncing around my head, but they must have been because I was reeling it off like a script. It’s challenging to keep your head in a positive place when something is happening to your body that is so abnormal. I felt tired, dehydrated and bored of it all. Anna and I sat crying together after the call for a few minutes, then relief. We were laughing again 10 minutes later. We don’t stay down long.

Saturday, I thought things were better, even if I still felt terrible. Some friends from London came to visit, along with my best friend, Luke. We had a great day – lunch, dog walk, board games, bed. I even had 2 pints with lunch, something I haven’t done in a long time. It all felt… normal? It was exactly what I needed. Unfortunately, Saturday night, there was more blood. Another call to the chemotherapy hotline and a lapse in positivity. It was Ok, though, and by Sunday, I felt good again; other than being tired, but that is part and parcel of chemotherapy. Tiredness becomes as reliable as your shadow in the sun.

This week is going better. The sun has been shining, I’m getting back to being active, and my mum and I are doing yoga every morning. Today I went running again and hit the 5K mark! I walked for a few minutes at around the halfway point to give my body a bit of a rest, but ran other than that (albeit, slowly). Yesterday’s run provided me with a baseline, so I wasn’t quite as shocked by how my body responded to the exercise today. It’s yet another microcosm for the way I seem to process things. The event happens, and I respond negatively; then, after sitting on it, I work through that negativity and recognise the positives, allowing me to build on it. Yesterday, I felt disappointed that my body felt slower and more lethargic. Over the rest of the day, I felt more optimistic for having managed to run again at all. Then today, I better understand the parameters of my body and realise that I can still hit targets so long as those targets are adjusted for my new reality. That then allows me to push myself again, and feel good about things. Maybe one day I’ll be able to curtail the initial emotional and negative response. Maybe.

9 thoughts on “How Much Do I Share?

  1. Dan, I am loving your diaries & your progress re getting back to running. This is something I’m still a bit afraid to do, don’t know why. You must have run past my house on Talke Road, sorry I didn’t see you to cheer you on. Your ability to express & write about your feelings & challenges is so inspirational to me & has helped me a lot even tho my battle is very small compared to yours. You are so mature & knowing for your age. Keep writing & running. Gaywin Dayson xx

    Liked by 1 person

    1. It is a big step so I don’t blame you! It took me months before I felt like I could try it again. And I did run past you’re house 🙂. I’m glad you’re enjoying the blog and I hope you’re feeling ok about your battle. No battle is small with cancer!xx

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  2. You’re handling it all so incredibly well, including the negative and scary parts. It would be impossible for them not to affect you – but you work through it, turn it around and get back on your feet every single time. That’s something to be proud of.

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  3. I hear you on how difficult it is to talk about the unsavory side of symptoms but it is clear we need to know about them to be forewarned for any future problems any of us could have. Thanks for biting the bullet and going for it. It sounds like you are handling things really well, out running, doing your best to be active and live a normal life. An inspiration to us all.

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    1. Yes that’s what convinced me to write about it really. It might be uncomfortable but it’s extremely important! And I’m trying to keep things as normal as possible 🙂 thank you for the kind words (and again for sharing the post with your followers)!

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