Merry Christmas and Thank You!

And another year slips by in what feels like the blink of an eye…

This Christmas is feeling a little different for me in a few ways. Usually, I would have spent Christmas Eve having a few more drinks than the average night with my family and friends. In past years this has resulted in me struggling to eat my Christmas Dinner or, in particularly bad years, stopping me from enjoying a single second of Christmas Day. I can’t say that I feel disappointed about this change. I still had friends over yesterday though, and they had some drinks with my family. I just enjoyed the company, and they are always great company!

Finch waited until everyone was there before walking into the room with 2 wrapped presents and a card. Everyone was smiling and I was trying to figure out what sort of smile it was. Were they happy because they knew the presents were that good? Have they done something else that I was going to struggle to accept? Or were those smiles in fact smirks? Is this going to be at my expense? I was told to unwrap the presents in the order they were handed to me, including the card in the middle.

The first present was a book. ‘Everybody Writes’ by Ann Handley, a book about improving your writing. “So the first present was incredibly thoughtful,” I thought to myself. I read the card next – “To Dan and Anna. We have put something together which will hopefully help put a smile on your faces if future dates/appointments begin to become a little overwhelming”. My interest was well and truly peaked, but it seemed another undeniably thoughtful present based on the message. I unwrapped the last present and found it was a calendar with the picture from the surprise engagement meal on it; I used this picture in my Friends & Family post. What I didn’t know at the time was that this picture was a ploy. It was a façade placed there only to naively draw me in. What followed was me flipping page by page through the calendar to various levels of laughter, surprise and a peppering of disgust. Seeing as they gave me this calendar to hang in my house, I don’t think they will have a problem with me posting it here. Flick through at your own risk, there’s some disturbing content to say the least. It really is undeniably thoughtful though, and it will definitely put a smile on my face no matter what appointments I am having to mark inside it.

I also wanted to add a couple of honourable mentions. Firstly, to Lucy Giannasi for making me the amazing ‘Ebb and Flow’ card. I love it so much and it is so beautifully done! Next, to the group of friends that are self-named ‘The Turks’. I met Dan Sayek at Arcadis when I used to work there, and he’s been a very close friend ever since. Lucky for me, Dan Sayek comes with a whole catalogue of other friends that he knows from Turkey. They all live in London and are amazingly intelligent, thoughtful and interesting people. Not only have they made the 3 hour journey from London to visit me recently, but they then sent a Christmas Hamper to Anna and I to say thank you. What they were thanking me for I am not sure, all I did was cook them some spaghetti and let them look after my dog. I am so grateful for them and all the support that they are providing to me.

Another change this year is that my brother Greg won’t be here as he failed a PCR test. The labs were struggling to meet demand with PCR results this week it seemed, and it took 5 days for him to receive his. He had packed up the car with his stuff and was ready to leave Manchester as he received the positive result via text. By this point, he was convinced that the minor symptoms he had experienced the weekend before were due to the booster jab. He had done 2 hardcore cycling sessions that week since experiencing the symptoms (for those of you who know him, you will know he doesn’t do easy fitness sessions) and neither of them phased him. He was pretty sure he couldn’t do this with covid, but he did also test positive for Covid a few days after competing in the Bolton Iron Man last year; we should have known better really. Apparently us Godley’s like completing challenging events with unknown health problems – I did my last ultra marathon with cancer and Greg completed an Iron Man with covid. Luckily, his wonderful girlfriend Kate is staying with him in Manchester, so I hope they have a lovely day together and I look forward to seeing them soon.

The biggest change for me though is my diagnosis. What is strange is that Christmas was one of the first things that played on my mind when wrestling with the idea of having cancer. “I wonder how many Christmases I have left,” I sat pondering at 4am in my hospital bed one night. It really bothered me. I wondered if I would be able to enjoy any single one of them, or if the pressure I’d put on myself to enjoy them to the fullest would make the whole thing overwhelming.

I am now in a completely different headspace to then. You cannot process news like that in a week. You can’t even expect yourself to process it in a month, or 6 months, or even a year. Everyone is going to be different, and what ‘processing the news’ means for you may be very different to what it means for me. It is also influenced by the people around you, including the doctors you have. My processing came in waves, across 2 diagnoses of very different severity and with a range of differing attitudes of different doctors and nurses. It was only when I got to The Christie in Manchester that I felt like a set of doctors truly spoke to me positively about the situation, and that made a huge difference for me. Until this point, I was still processing news that felt to me was almost certainly a death sentence, something which was taking me a while and was difficult.

Another thing worth mentioning is that I have started to use Twitter to follow others experiencing cancer. Those of you who know me likely know that I have been very anti social media for a long time (Strava doesn’t count as social media – don’t even try it). For me, I realised that social media gave me a false reality that negatively affected my relationships. It was a means of feeling like I had a lot of friends and that I was involved in their lives, but actually I was passively learning about the ongoings of their life with little effort or engagement from either of us. As a result, I deleted all of my personal social media accounts and decided that any relationships I have from now on, I must make an effort to sustain. It felt good, and I have stood by that stance for 6 years. Now that I have a Twitter for the blog however, I have started seeing some different positives to social media. Twitter is helping me find people experiencing similar things to me, which is wonderfully therapeutic and encouraging. I opened the Twitter app 2 days ago to find the following tweet at the top of my feed.

The treatment plan she speaks of here is the exact same treatment plan that I am currently undergoing. Folfirinox is the same chemotherapy type that I am on, 12 sessions (2 cycles of 6 sessions) is the current plan and the aim of that chemotherapy is to allow surgeons to perform the Whipple, which is the type of surgery required to remove the tumour. I was suddenly flooded with so much positive emotion. Primarily for this woman who I did not know, but that I knew was sitting somewhere in the world right at that moment, experiencing such an incredible feat. I felt so incredibly happy for her. But it also showed me that treatment plans work and, specifically, my treatment plan has worked for someone. It is easy to say that this should have been obvious to me, but it felt different to see a random stranger write the details of the very same treatment plan as me, within a message stating that she had beat the cancer. What an amazing feeling, and it’s another example of someone sharing their message and having a profound effect on the world around them. I responded to her Tweet, and she sent me a lovely message of positivity and strength.

It is on this positive note that I will sign-off the post for today. Thank you so much for reading my blog, it means the world to me. It feels like I have been doing it for so much longer than I have, and I keep reminding myself that it is new to me every time I get cold feet about a post or feel self-conscious about things that I am writing. I’m learning a lot about writing and about myself, and it is when I am learning that I am most motivated in life, so it is helping me tremendously with my diagnosis. I hope that you have a lovely Christmas day and spend it with whoever is closest to you, exchanging gifts and eating far too much food.

Love, Dan x

The 7 Days of Chemo

The Chemotherapy Diaries

The last Chemotherapy Diaries post was signed off stating that I have 2 weeks of suffering between chemotherapy sessions. I have a confession to make. It is more like 7 days of suffering, followed by 7 days of minor suffering. This doesn’t roll off the tongue quite as well though, so forgive me for being melodramatic. Today we’ll walk through some of the weird and wonderful symptoms of that first 7 days, based on my experience so far.

I’ve had 2 sessions of chemotherapy to date, my first on November 27th and again on December 11th. As my sessions are every 2 weeks on the Saturday, you may notice if you have a particularly impressive mind that my next session was due to be on Christmas Day. I had braced myself for this and was thinking of ways I could make it feel special. “I could wear a Santa hat,” I thought, realising that cancer has turned me into the most boring person on the planet. It needed to be something that would make it feel like Christmas at home, like drinking a White Russian.

My family has a tradition of drinking White Russians on Christmas Day. I’m not sure if this is a traditional drink to have at Christmas, but the drink is predominantly white in colour which is the second most Christmassy colour after red. Even more confusingly, I believe the tradition was started by my sister Josie who is a vegan. If you aren’t spotting why that is confusing, then you probably don’t know that a White Russian is a cocktail mainly consisting of cow’s milk. Her husband has accused her of downing milk in the kitchen at night when no one is awake: I can see where this theory may have come from.

I received the appointment card for chemotherapy session #3 and checked it – ‘Monday 27th December’. Well, there goes my opportunity to wear silly hats and sneak alcoholic drinks that I don’t want to drink onto the ward. I have started to bake things for the nurses on the ward though. For the first session I was too nervous to do anything but show up, but for the second session of chemotherapy I baked the nurses brownies. My nurse paraded them around the ward showing all the other nurses what they had to look forward to. I then received a steady stream of visits from them one by one accusing me of buying them from a shop because they were so nice and thanking me. Baking and blogging, I’m currently fluking competence at both. Maybe I’ll make them a Yule Log for the next session. I made some Belgian Buns that I was quite happy with so I am posting a picture of them. The bake isn’t particularly even and I don’t think I’d be getting a Hollywood handshake, but I’d like to think he’d give me a sympathetic smile or something.

As I’ve only had 2 experiences of the fateful 7 days after chemotherapy treatment, I am still learning about many of the side effects of it on my body. Despite my first actual treatment day being easier than my second, the following 7 days were considerably harder the second time. I’m hoping this trend isn’t going to continue as by session 6 (the final session) I will be unable to crack a single joke about any of it.

The symptoms that the doctors warned me of most, and that I already mentioned in chapter 1, is an adverse reaction from your body to changes in temperature. This manifests in various ways depending on the part of the body in question. For example, if my throat gets cold because I have gone outside without a scarf on, it will swell, and my breathing will become coarse. I start to sound like an excited dog on the end of the leash that seems to get a kick out of being strangled. My voice also sounds like I’ve smoked 20 cigarettes that morning after a heavy night on the town. You also cannot eat anything from the freezer, must avoid cold drinks and ice is your enemy. This was particularly upsetting to me. When I was experiencing a lot of abdominal pain, my diet consisted primarily of Orange flavoured Calippos. If you don’t know what a Calippo is, they are a delicious brand of ice lolly that probably have a higher amount of sugar in them than water. Part of my daily routine was to go to the corner shop and buy 3 during the not-so-warm months of October and November. The shop owner used to give me these strange looks that I didn’t even see him give to the alcoholics buying extra strong lager at 7am on a Monday.

I previously mentioned about the pins and needles in my hands in the first blog. This is another reaction to the cold. For the first 7 days after a treatment day, my hands are extremely sensitive. For example, I was cutting some chicken to give to my dog Lucy for her dinner one day. Upon touching the chicken, my fingers immediately cramped so badly that I couldn’t move them at all. I stood looking at my hand in utter disgust before running it under hot water for a minute or so, which finally restored some movement. Again, cold water is your enemy. Avoid at all costs. It will take away the movement in your hands and leave you with pins and needles so bad that the name is far too meek to adequately describe it: swords and sadness is a better name for this issue.

Gloves are an absolute essential, even when driving. The steering wheel is too cold in December to touch with chemotherapy hands, so I must dress like a chauffeur if I need to go out in the car. I don’t attempt driving until the second week of treatment usually, but this symptom seems to hang around more than others.

The worst symptom for me is the sheer tiredness. It is like nothing I can describe. You don’t just feel like you need a lot of sleep, it leaves you feeling utterly dissociated from the world around you. I have moments where I suddenly realise that I am participating in a conversation with someone, but I am doing so entirely on autopilot. My mind just cannot focus. I start feeling like I am floating through my day, falling asleep regularly and barely being cognisant when I’m awake. And when I do sleep, it is such a deep and unsatisfying thing. I tried to describe it to my brother as feeling like you’re having 3 concurrent dreams at once, but you don’t know what is happening in any of them and cannot even divide them from reality because you usually aren’t in your bed and didn’t plan on falling asleep. He pointed out that it sounded like I was describing the levels of sleep from the movie Inception. Fairly accurate, I guess.

A newer symptom is the chronic back pain. I’ve said it before and I’ll say it again, I’m not a medical professional and this is a very colloquial description of the problem. One of the joys of chemotherapy is that it hammers your white blood cells, leaving you extremely vulnerable to infection and diseases. To counter this, for 5 days after the chemotherapy treatment finishes, you must inject yourself in the stomach once a day. The injection forces your bones to create more white blood cells. Quite amazing really, except the well documented issue that this causes: body aches that feel like someone woke you up that morning by driving a train into your bed.

The pain I have started to get in my back is truly unbearable. The wonderful Anna has had to dedicate blood, sweat and tears to attacking my back with a massage gun at 2am, whilst our puppy Lucy watches in utter bewilderment from her bed on the floor. She must have no idea what’s going on. I called the chemotherapy hotline about this pain on Saturday. To my amazement, they told me to use the painkiller liquid I was issued to full capacity if that is what it takes to kill the pain. This liquid was given to me when I was experiencing a lot of abdominal pain during the night. It was issued alongside a stark warning that it is extremely strong. I can attest to this, and the few times I’ve had to take it I have sat wondering when it’ll kick in for about 3 minutes, before going into an alleviated state of euphoria which I usually wake up from 2 hours later having no idea what just happened. It’s like injecting yourself with absinth. Next cycle, I’m going to be hitting that bottle like it owes me money.

Finally, the jaw pain. Again, I have mentioned this briefly in the first post. It is the mystical symptom that is undocumented but apparently completely normal. When I first put food in my mouth, I get shooting pains throughout my jaw which are so painful I must sit with my head in my hands for about 10 seconds, teeth gritted and palm on forehead. The frustrating thing is that the pain is only in the exact part of my mouth where the food is; so, if I do not try and chew my food with all areas of my mouth straight away, I get the same pain repeatedly as food makes its way around my mouth. This symptom is the one that catches me off guard the most, and I find myself in the middle of a routine conversation with someone in my family whilst I eat my breakfast, only to unexpectedly flinch, utter every expletive under the sun, then put my head in my hands and moan for a few seconds. It’s quite the ride for my family. Writing this has also made me realise how repulsive it is to describe chewing food, so apologies for that.

These have been what I consider to be the most interesting of the symptoms. There are other, more predictable symptoms, such as nausea and an occasional aversion to food. But they are largely manageable with the drugs issued to you. Hair loss is a side-effect associated with my chemotherapy, but it isn’t guaranteed like it is with other types. I think most people who see me these days expect me to show up with even less hair than I already have, but my small amount of hair seems to be staying put for now.

After the first 7 days after treatment, I generally start to feel better. Most of these symptoms remain to some extent, but I can get out of bed and move around the house freely. I even manage to get out and see some friends, which is much needed after the stressful symptom-heavy week. It is to be seen if any of these symptoms worsen the more chemotherapy sessions I attend. Apparently, it is quite common to have a really hard treatment towards the end of the cycle, usually around the 5th session. Although I don’t want this to happen, it may make for some good material for the series. Time will tell.