The Chemotherapy Diaries
It finally happened, I’ve tested positive for Covid. After avoiding it for an amount of time which can only be described as unfashionable, it’s finally got my number. I had my suspicion that this would happen. Anna tested positive a week ago today and we had been isolating from each other around the house. It all seemed to be going quite well. Saturday morning, treatment day, I was still testing negative and feeling fine. Knowing that a major impact of the chemotherapy on the body is that it impacts your immune system, I did speculate that the defence my body was currently putting up was probably about to diminish. It may have just taken this long to establish itself anyway; I had kissed Anna 10 minutes before she first tested positive, which was the most confusing part for me. However I caught it, I’m now finally part of the ‘C’ club. Not the Cancer one, the Covid one. Although I am part of the cancer club too, and I’m on chemotherapy. I even have a series called The ‘C’ Word series that tries to avoid talking about cancer. I’ve also noticed that I frequently sleep in a C shape now because it seems to cause me the least pancreatic pain through the night and in the morning. I bend my back like I’m bracing for impact on a plane, then tuck my legs into themselves. It’s very comfortable. I’m starting to feel a bit like Jim Carey’s character in The Number 23 where he starts to obsess that the number 23 appears everywhere in his life. The Alphabetical C with Dan G.
Saturday’s treatment was quite straightforward. The hospital seemed quieter than normal. I remember it being similar around Christmas time when I was in for treatment. I had asked my nurse that day why it was so quiet and she had replied that many people don’t have treatment around Christmas time, especially if their treatment is palliative. They opt to enjoy more time with their families instead. I wondered if that same principle would apply around Easter weekend too, with there being 2 public holidays on either side of it in the UK.
I arrived a little late after sleeping in until 7:40am. Oops. We usually leave the house at around this time, so it was considerably later than normal. We were only 7 minutes late to the hospital though, so it wasn’t too bad. I apologised for my tardiness as I signed in at the reception, then had to explain was tardiness was to the receptionist. She originally thought I was apologising for having a mental ailment which was extremely embarrassing for me; perhaps I’ll stay clear of using the word tardy so liberally in future. It is such a nice word, though. My name was called about 5 minutes later and I made my way upstairs to the ward.
It was all pretty non-descript from here. They weighed me, stuck the line into my port in my chest, and treatment had begun. For the first time since starting chemotherapy, I actually did very little during the session. I didn’t even use my headphones. I was just sitting watching videos on Youtube with subtitles on instead. I’m not really sure why – usually I get a good 2 or 3 hours of writing time in, and will read for at least 45 minutes. I did notice that I am becoming a bit of a chemo veteran as I eavesdropped on the various conversations going on around me. Straight across from my bed, there was a man who was attending his first session that day. He still had the dressings on his neck where they had inserted the port. I heard him say it had been installed Thursday morning. That was the exact same timeline as mine – Thursday morning they installed it and Saturday morning I was at the hospital, receiving my first dose of treatment. It felt strange thinking of all that had gone on between then and now. He seemed to be dealing with it well, though, and I hoped that was because his diagnosis wasn’t too bad.
I also heard a woman in a bed next to me boast that she was on session 7 and only had one more to go. She was dishing out advice on how to cope with some of the more uncomfortable side effects. My competitive side was kicking in and I was tempted to shout over that I was actually in the process of hitting the double-figure mark – session number 10. Maybe I’d sign an autograph for them or dedicate a blog post to them, where I impart all of my learned wisdom to them. She actually had better advice than me and was stating all sorts of hacks for the morning of treatment, the day before etc. Perhaps what I was starting to feel was inadequacy. She was recommending being extra healthy the day before your treatment; that’s usually the day I want to scoff as many takeaways and run as far as possible before I have to deal with the chemotherapy fog again for another week or so. Maybe she’s right. I should have asked for her autograph. She might have even had her own cancer blog that I could have followed. Damnit.
I left the hospital with little to report. I had baked the nurses some Almond and Raspberry slices, a recipe that contained pastry. I’d never made my own pastry before and fancied a challenge. Friday morning I did my first batch to test on my family and friends and they seemed to go down very well. Feeling confident that I was a natural – Pasty Dan the Pastry Man – I returned to the kitchen that evening to make another batch for the nurses. It went well, almost too well. As I handed them over to the nurses I said something attention-seeking and pathetic like “it’s my first time making pastry so approach with caution”. There was veiled confidence in the whole thing and I knew they looked good. Low and behold – I got ABSOLUTELY NO COMMENTS ON THEM. Of course, that’s fine. I bake for the nurses because they genuinely deserve it for being amazing people who dedicate themselves to a very tough and emotionally volatile job… but I’d be lying if I said I also liked the comments on how nice the baking was and how flattered they all are. As I left, one nurse said “I can’t wait to try one during my lunch break”. That’s what it was, they’re all waiting for lunch to eat them. I slept easier after convincing myself that was true. I’d tried them, I knew they were good. My dad had eaten nearly all of them after about an hour of them being baked, but that isn’t always a reliable test of how good something is to eat. More how easy it is to eat at that exact moment in time. It passed that test with flying colours.
The rest of the weekend was very chilled. For once, the sun came out to play on Sunday, so myself and the family had a BBQ and lay around in the garden. It was very nice. I basically spent the entire day sitting outside on the swinging chair and relaxing. Going through chemotherapy is much easier now that the weather is a bit warmer. It was quite miserable in November, constantly getting pins and needles in my hands and face and constantly trying to avoid going outside. If you want my advice, try not to get diagnosed in winter. A summer diagnosis has far more to offer the individual.

It was Monday when I started getting a little suspicious of my body. It is quite normal for me to get cold-like symptoms after treatment for a few days. My nose usually runs quite a bit and my throat sounds hoarse, but I was actually coughing quite a bit which is more unusual. After digging around the house for a Covid test and not finding one, I gave up and decided that the UK Government clearly don’t want me to determine whether I am sick or not, seeing as they are charging for tests now. My dad had other ideas and immediately went out, spending about £70 on Covid tests. We then found one laying around the house anyway which confirmed my fate – it was to be a covidy, cancery, chemotherapy-y kinda week.
So far, I’ve just felt more tired than usual, which is saying something because I already do a good job at being tired this early in my chemotherapy cycle. I’ve slept most of the day away today. The blog is providing a nice distraction in the periods I manage to stay awake long enough to write something. Who knows what the standard of writing is like in this post, though, as I’ve mostly been floating through it with a mixture of geniality and unqualified wonder at whether any of it is interesting. The cough isn’t too prominent for me – it just randomly pops up every so often, politely reminding me that I do, in fact, have covid. I guess both covid and cancer are attention seekers in that respect; sometimes you forget you have them, then some side effect rears its ugly head and demands your acknowledgement. “Yes covid well done, you did make me cough,” or “Yes cancer well done, you did make me wake up at 4am feeling pain in my digestive system. You’re so smart. Now go back to sleep.”
Next on my list of frustrations for the day is my delightful employer who has randomly emailed me out of the blue, telling me that my Statutory Sick Pay is coming to an end. At least they’re consistent in their hands-off approach. The email simply read “Please see your attached SSP1 form,” which I then opened and saw that they will no longer be paying me sick pay from April 23rd 2022. Quite incredible really but I’m learning to not expect anything more than the absolute minimum from them. I’d like to think they had some form of cheatsheet for what this means and what could possibly come next for me but, again, that would be inconsistent with their general approach of “you all die alone anyway, figure it out for yourself.” Cool. I guess I better get my financial hat back on and figure out what the hell I can do next then, in-between sleeping and feeling ill from the chemotherapy of course. Never a dull moment!
Sorry to hear you’ve got COVID Dan. Your kindred spirit up here has gotten it too – he’s done remarkably well to avoid it all through treatment & surgery with 2 small kids in the house! He’s getting the monoclonal antibody treatment for it tomorrow – no suggestion of that for you?
Hope you make a swift recovery!
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I haven’t even heard of that, no! What is it? Thank you – it’s pretty tame as of now, just an added layer of tiredness on top of the chemotherapy!
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We still get letters from the Scottish Gov due to Stewart having been on the vulnerable list. If that’s the case up here you get priority PCR testing & access to treatments to prevent your COVID becoming more serious. Irony being he doesn’t now have cancer as far as we know!
He’s the same as you, bit wiped but handling it well.
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Hi Dan
What more can be thrown at you ? I know it’s a pain listening to other chemo know it alls I think I was like that after about the 9th session we suddenly become experts but sometimes the tips can help.As for your workplace they obviously don’t have a care code for employees I was very well looked after with full pay to the end of the year plus a bonus even though I was retiring in the July it made me feel they appreciated me and were looking after my welfare which helped when I was feeling so down you can do without this negativity.I still have the pins and needles (neuropathy) my hands aren’t too bad but feet have a life of their own they did say it could return to normal or not so I live in hope.I’ve still managed to dodge the Covid so can’t begin to know how you feel on top of the after chemo issues. Take care and stay focused x
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Oh boy. So sorry to hear that! I so hope things get better – it must just seem like one thing after another! Prayers and hugs. Chris
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Your sense of humor is awesome! Wishing you all the best 💗
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Just catchin up Dan with a read of your last 4 blogs, so this is a response to those 4 not just this one. Like many of your fans I read every one of your blogs and see the strength of a person not just with a determination not to be ground down, but to forge new ground for the better future of himself and others.
It takes focus, determination, love, routine, to name a few elements, to push through times of turmoil, and you need and produce these by the spade load. If the occasional spade comes up a bit short or includes a bit of something you are more likely to attribute to Lucy then you have to roll with it – sh*t happens as they say.
You have a ‘new-normal’ to embrace. Having difficulty accepting this because the ‘old-normal’ still has a strong appeal is normal. The bad news is that you will no sooner accept this ‘new-normal’ than all this will be behind you and ‘normal v16.2.1’ (which may transpire to be little different to normal v1) will beckon.
Your cancer is survivable and you have not been excluded from that shortlist, never forget that. That gives you personally a 100% chance of survival. We are not going to see 10% of you in the future, it is going to be you, the whole you, and nothing but you.
Your wellbeing and that of those close to you are always in our thoughts, and clearly those of many, many others share that sentiment.
Love, cuddles and best wishes.
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Ah thank you very much! Absolutely beautifully written as always. You guys should start writing motivational cards or something! Hope you’re all keeping well and hopefully see you soon x
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Just catchin up Dan with a read of your last 4 blogs so this is a response to those 4 not just this one. Like many of your fans I read every one of your blogs and see the strength of a person not just with a determination not to be ground down, but to forge new ground for the better future of himself and others.
It takes focus, determination, love, routine, to name a few elements, to push through times of turmoil, and you need and produce these by the spade load. If the occasional spade comes up a bit short or includes a bit of something you are more likely to attribute to Lucy then you have to roll with it – sh*t happens as they say.
You have a ‘new-normal’ to embrace. Having difficulty accepting this because the ‘old-normal’ still has a strong appeal is normal. The bad news is that you will no sooner accept this ‘new-normal’ than all this will be behind you and ‘normal v16.2.1’ (which may transpire to be little different to normal v1) will beckon.
Your cancer is survivable and you have not been excluded from that shortlist, never forget that. That gives you personally a 100% chance of survival. We are not going to see 10% of you in the future, it is going to be you, the whole you, and nothing but you.
Your wellbeing and that of those close to you are always in our thoughts, and clearly those of many, many others share that sentiment.
Love, cuddles and best wishes.
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This is probably late but I hope you’re doing good now. 🙏🏻🙏🏻🙏🏻
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Thank you – I’m doing much better now! It knocked me pretty badly at the time 😅
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That’s nice to know.
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A tardy hello fellow pancreatic cancer comrade…your blog was recommended by a really great friend and and is someone who I love dearly & is always looking out for me. To be honest I don’t usually read many blogs as it feels like an intrusion into others problems of which I have plenty already. However I have found your tips for coping with Folfirinox exactly mirror things that I have been doing and it’s interesting that the mouth ulcers are my stumbling block which I haven’t been able to overcome effectively. I have tried the Iglu but gave up as it’s awful to apply however I’m going to give it another go using your technique for drying and skin before using. I’m starting my next 12 rounds of Folfirinox today (17/05/22) and have completed 24 rounds so far…. hydration, hydration, hydration is key and TBH I made sure I’m wearing a sanitary pad and dark trousers just in case 😉
Keep up the good work and stay positive… this is as much a mental battle as a physical challenge. Ohhhhh and thank you for posting your blog….it is being read my many people and it is helping us cope more than you can possibly imagine. Cheers Pedro.
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Hey Pedro
Thank you so much for this lovely comment. It means so much to hear people are connecting with the content. I have to be honest, I’m not a big blog-reader either but I try to read more now that I am ‘in the game’ (if that’s the right phrase…). The Iglu didn’t work well for me for a while – it was my fiancée who read about drying the area etc. Its much better if someone can help you to do it. Trying to see into your own mouth, especially when they’re near the back of the mouth, is impossible. You want it to be someone who likes you enough that they don’t mind you dribbling on them occasionally, though 🙊🤤.
I can’t believe you’ve done 24 round of Folfirinox – that’s an incredible feat! I may have to pick you brains for some tips. I’m currently sat in the waiting area at the hospital – it’s my next CT scan today. It’s strange being out of the house this early in a cycle. I feel a bit disconnected… think it’s the infamous “chemo-fog”.
Anyway, thank you again. Comments like this motivate me so much to keep writing and I’m just so happy to hear it is interesting to others. Keep fighting on and reach out whenever you wish!
Dan
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