November 8th, 2021

The Road to Recovery

In Jordan, With the Wonderful Bride and Groom

It feels like a lot has happened since I last posted. I’ve been abroad for the first time since before the pandemic, I’ve completed the first cycle of chemotherapy and have now started cycle 2. I also marked the 1 year anniversary of my cancer diagnosis on November 8th – a scary yet momentous feat. Unfortunately, I didn’t manage to celebrate it with the same bravado that I was throwing at the cancer diagnosis this time last year.

The anniversary is a strange one. We didn’t throw a party with a huge ‘1 Year’ banner, or bake a cake with ‘Congratulations’ written across it. What is the appropriate way to celebrate your 1 year anniversary since being diagnosed with cancer? If it was my 1 year anniversary of getting rid of cancer, I may feel differently. That isn’t the case, though. This period has conjured up a mix of emotions in me, most of them negative. I wish I could shake those feelings, but I’m struggling to.

On the night of my diagnosis in King’s hospital, I remember sitting awake with Anna asleep next to me. As she slept, I sat staring at the ceiling. Throughout my life, I had been prone to thinking about the future and what it may hold for me. When I was younger, I would sit and wonder what I’d be doing a year from now at that exact second. In school, I would wonder if I’d have a new girlfriend or if I’d have done well in the end-of-year exams. As I got older, I thought about it less, but sometimes I would still entertain those thoughts. While living in Philadelphia, I’d wonder if I’d still be there or if I’d have gone back to the UK. It was a way of gaining some perspective on what was going on in my life, and it helped me appreciate the things that I enjoyed or didn’t enjoy about my current circumstances. The things that I fantasised about being different would usually be things that weren’t particularly working for me, and the things I hoped would have stayed the same, or developed further, were things that I was feeling content with.

As I lay staring at the hospital ceiling on the night of my diagnosis, I wondered whether I would even be alive a year from that moment. If I was, would I be happy that I was still alive? What if the cancer was out of control, and I was navigating a dark road to my ultimate end. I remember taking a deep breath, trying to be quiet as possible as I sat crying with Anna beside me, not wanting to wake her up. That night, we had expressed we had each other and that whatever happened next, we needed to spend it together and make sure we were happy. We’ve kept that promise so far.

It is strange being where I am now. The operation went far better than expected, which I am incredibly grateful for. That doesn’t change the fact that my life is a lot different now, though, and it will never return to the way it was. Without a pancreas, I am now diabetic in a way that I believe is much harder to manage. As far as I understand, the pancreas is not only responsible for producing insulin and regulating the body’s blood sugar levels, but it also plays a key role in regulating the hormones which control these processes. Without a pancreas, I have less control over those hormones. Some days I just cannot get my blood sugar to play ball at all. Some nights, my low blood sugar alarm will go off multiple times. Every so often, I’ll sleep through the first alarm and only wake up when I feel incredibly light-headed, with my legs shaking and a cold sweat starting to form on my brow. Sometimes, I’ll then sit there and wonder why the chemotherapy is deciding to wreak havoc on me at that moment before realising that my blood sugar is low. I’m still very new to diabetes, so the thoughts don’t always come naturally to me. I’ve gotten very good at having a broken night of sleep, and often have to eat fruit pastels at 4:00am to get my blood sugar up. Some people may think that is heaven, but it is far more annoying when you actually have to do it. I also have to clean my teeth after doing this, or I imagine my teeth rotting through the night and it stops me sleeping. Some nights I have cleaned my teeth 4 or 5 times because my blood sugar keeps going low.

I’ve tried to write a post about the anniversary of my diagnosis about 6 times over the past few weeks. The first draft was almost fully formed, and I was ready to post it on the day of the anniversary, but as I read through it, I didn’t feel comfortable sharing it. There was a lot of emotion in it, and I could tell that my head wasn’t in a good place. I wasn’t sure it was the sentiment I wanted to put out into the world for critical review. A few days later, I tried to rewrite it, but I found myself pulling every word I wrote to pieces. For some reason, I was being extremely critical of what I was writing. The language was too flowery, or I was dancing around my central point too much. At one point, I deleted 5 drafts at once, not even bothering to read their contents before doing so. The experience has really affected my motivation to write.

Perhaps linked to this self-critical attitude is my mentality toward starting the second cycle of chemotherapy. I started again on Tuesday, 15th November. The day before this, I had to go and do my blood test, as is standard before every treatment day, to ensure that the body is ready to handle another dose of poison. I sat in the waiting room at the hospital, keeping an eye on the appointment board and dreading my name appearing. Once my name was called, I made my way down the corridor and into the bloods office. I hung my coat up and sat down in the chair. “How are you doing today, Daniel?” the nurse asked me. She wasn’t ready for what was coming; I don’t think I was. The next 5 minutes was taken up by me talking about how I’m worn out, that I’m reaching total mental fatigue with the treatment, and that I don’t even feel confident it’ll increase my chances of survival, as that was what the oncologist had warned me about mop-up chemotherapy when he introduced me to the idea. They have not done the research to prove or disprove whether it was useful, but they tend to do it anyway, he had explained to me. It was the perfect distraction from the needle being pushed into my vein, but it highlighted that my head was not in a good place. The nurse was lovely and understanding. She punctuated my rant with encouraging comments like “you’re so close to the end” and “everyone goes through tough periods with treatment.”

One of the sticking points for me around the anniversary has been that a year ago, I genuinely didn’t believe that I’d survive this cancer. Now, I have a better shot at survival than I ever could have dreamt of then, so why am I responding like this now? I feel like I had more positivity to offer myself last year, when everything felt bleak and the road to recovery seemed insurmountable. I told the nurse that I felt like a spoilt child complaining about the position I’m in after having a successful surgery and being so close to being classed as ‘in remission’. It is a privileged spot to be in and one that the majority of people with pancreatic cancer don’t get to experience. I’m sure that I read recently that 50% of people diagnosed with pancreatic cancer are dead within 3 months of diagnosis; thinking about that just makes me feel even worse for complaining about the situation I’m in. “You can’t control the way you feel, Dan. Don’t be so hard on yourself.” I knew that the nurse was right in saying this, but it did little to pick up my mood.

The week before I returned to treatment, I had been in Jordan on holiday. One of my best friends is Jordanian, and we went over there to attend his wedding. We spent 7 days in the country, mostly in the capital Amman, but we also travelled around a little bit. Of course, we went to see the awe-inspiring Petra, but we also spent a night in the desert at Wadi Rum, and another night at the Dead Sea.

The trip had been causing me a fair amount of anxiety in the buildup to it – it was the first time I was going abroad since before Covid but, more importantly, since being diagnosed. Now, when I go abroad, I have a truckload of drugs to take with me, as well as my various needles used to treat diabetes. It was too easy to envision a situation where I lose all of my stock of Creon, a critical drug I need when eating, or leave my diabetes pens somewhere, or the airline loses my luggage which contains all of my backup stock. I fantasised about going through security in Jordan, only to be stopped and accused of bringing in illegal drugs. Of course, I waltzed through without anyone even batting an eyelid at me. You are your own worst enemy.

Jordan contains many sites that are incredibly old, with amazing structures that have stood for millennia. Some of the artefacts that we saw in the museums were nearly 4000 years old. It is mind-boggling. As I stood in a small museum on the site of the Amman Citidel, I observed a small skeleton through the glass. The information card in front of it stated that it was a child’s skeleton and that it used to be tradition, if your child died, to put their corpse into a jar, then keep it under the floor. I had one of those moments where all of my concerns and dissatisfactions with the world felt infantile and pathetic; I’m only bones, after all. It used to be common for children to simply die during birth, along with their mother. Why am I so precious about my life? What do I even add to the world? I haven’t cured any individuals of disease or given up my time to help those in need. It did little to improve my mood, but the whole experience was inspiring. I’m sure on another day I would have taken a very different message from it, but I was feeling egotistical and sorry for myself that day. It was more fuel to throw on the ‘woe is me’ fire.

One of the most amazing things we did in Jordan was visiting the Dead Sea. It is quite a beautiful shade of blue, and as we sat in the car driving along a road which framed it, I couldn’t help but be taken in by its glimmer. The sensation when you are in it isn’t like anything I’ve experienced before. It pushes you upwards, so much so that if you lean to one side and throw off the balance of your body, it will force you onto your front. We had Googled whether any life existed in it earlier that day and learnt that life cannot be supported in it due to its high salt content. It is hard to believe that a body of water that large contains no life at all. My hatred of the sea is due to the fact that I know there could be things lurking around me in the murky water; it makes my skin crawl. As I floated in the Dead Sea, I couldn’t kick the idea that there was a leviathan lurking at the bottom of that lake, waiting for the day that Daniel Godley, from England, made his way into the water for a casual dip. No Leviathan ever showed up. Perhaps they heard me saying to Anna, “we’ve got to come back next year,” and decided to wait until then to reveal itself to the world, as it ate me up. I did lose my wedding ring in the water too – perhaps the offering was enough to buy me some time. I made the point to Anna that I am now single, all before the big wedding that we were due to attend at the end of the holiday – what a result! She wasn’t too impressed.

The Jordan trip was mostly amazing, but there were a few incidents which kept me anxious. I’m prone to random (incredibly painful) attacks of abdominal pain and stomach issues. Of course, one of these incidents came as I navigated the old tombs of Petra. The toilets at this site are far from good. I think that referring to them as a sleight against human decency is a more accurate description of them. Despite this, I was forced to sit in one of them whilst I gagged into a dry toilet basin, piss surrounding me on the floor and a man trying to sell ‘ancient rocks’ within earshot, on the outside. The whole scene did little to make me feel better, and in that moment, I swore that when I return to my house in England, I’ll never leave it again.

Outside Petra

There was another day in Amman where we had walked around the markets for a few hours and were now ascending a hill to see a famous street called Rainbow Street. As we made our way up the stairway to heaven (it went on as far as the eye could see and felt genuinely insurmountable if you dared look up as you climbed it), I started to get bad stomach pains. Once we got to the top, I decided that I needed to find a toilet and fast.

We went into a small coffee shop and asked if there was a toilet. The man warned me that it wasn’t in good shape but agreed to let me use it. He unlocked a door to the side of the counter and didn’t make eye contact with me as I entered. He knew he was stitching me up; he had tried to warn me. I shut the door behind me, then turned to look at the room. The sink was not connected to a drain, and there was half a mop was lying across the floor (who knew where the other half was). The whole room was thick with the smell of cigarette smoke, and everything was damp. As I lifted up the toilet, I took a deep breath. The water, if it indeed was water at all, was black, and there were 5 cigarette ends floating in it. That explained the thick stench of cigarette smoke, at least. I immediately dropped the toilet seat shut and decided that I’d rather shit myself than spend another second in there. I ran out, passed Anna, who was standing ordering a drink, thanked the man, and proceeded to run around Rainbow Street, looking for a respectable alternative. Luckily, I found one.

I think the trip to Jordan has added to my mental burnout now with the treatment. My oncology team had agreed to give me an extra week off to allow me to go on the trip, so I’d had 2 weeks off treatment, as opposed to the 1 week that was in the plan. It took most of week 1 to get rid of the mouth ulcers and stop feeling a constant level of sickness. A little like a school child who has been off for the summer holidays and is now resentful that they have to return to school, I feel resentful that I am back on treatment. On top of that, I really do feel one of the worst that I have ever felt during chemotherapy. Every morning I struggle to get out of bed, and I am regularly getting migraines. After eating, I often feel sick, and there is an iron taste of blood which lingers in my mouth after I take the chemotherapy tablets. I try brushing my teeth, and it relieves it for a while, but then the taste fights back, and I am left with an irony, mint taste that makes me feel even worse.

When I went for treatment on Tuesday, I couldn’t help but think about the needle being pushed into the port in my chest. The whole thing made me feel anxious in a way that it hasn’t since I first started chemotherapy a year ago. When you look at the needle in the nurse’s hand, it looks quite long. I’d learnt to not focus on it and to look away, but here I was, driving to chemotherapy, fantasising about the size of it. I thought about the sharp shot of pain that bolts through the chest plate as it enters the skin, then the momentary flash of heat that seems to rush through your body. I didn’t feel ready for it. In my mind, I contemplated how I could get out of doing the treatment. Perhaps I could tell them that I have Covid. I knew that it would just be delaying the inevitable, though, and that I’d only be deferring the uncomfortable for another week. It was going to catch up with me eventually.

I’m trying to remember how broken I probably was a year ago from now, yet how much better my attitude was then. I would have been 1 or 2 sessions into Folfirinox with an unknown outcome and an uncertain future. Part of me thinks that I should start going back to the blog posts that I wrote a year ago today to remind myself of how much better my attitude was then under much more difficult circumstances. The thing stopping me is that I worry I’ll only focus on the things that I don’t like about my writing and that it won’t actually help me gain any perspective at all. I can’t stop thinking of the quote – ‘Life is wasted on the living’. When I was certain I was going to die last year, I felt more energised and motivated to enjoy life than ever. As soon as I feel more comfortable in the situation, I find myself moping around and complaining about my treatment schedule, and taking every bout of illness to heart, as if it is the end of the world.

The fact is that I’ve been doing this for a year now, and although every treatment step is designed to ultimately make me better in the long run, they all actually make me feel worse in the short term. Every session of chemotherapy leaves my body more run down than the last; the surgery has taken months to overcome, and in many ways, I am still struggling to fight back from it. I felt well enough to run throughout my original sessions of chemotherapy, but I haven’t managed to run at all since the surgery. There has been very little respite in the process. The burnout is becoming tangible. I feel like a drag to be around. I want there to be a button I can press to fast foward the next 2 months. Such a thing doesn’t exist, and I am conscious that you should never wish your life away, so I’ll keep pressing on. Just another 6 weeks or so, then I can focus on getting on with my life – so long as the post-chemotherapy scans don’t throw any curveballs in the mix… I can’t be positive without countering it with something negative at the minute, can I?

17 thoughts on “November 8th, 2021

  1. Christine Watson says:

    Oh Dan you’re doing so well under your circumstances! You are bound to be mourning your life you were living before all the pain and discomfort you have now. You’re stronger than you think and with your determination I’m sure you’ll be running in the near future! It’s so hard Dan, be kind to yourself. Love Chris xx

    Liked by 1 person

      1. Chris Watson says:

        Thank you for your kind words Dan. You know that even though you are going through so much your kindness still shines through in your blogs. Your Mum and Dad have done a good job too! Take care xx

        Like

  2. Thanks so much for sharing your experiences, Dan! Wishing you well and all the best!

    I don’t know if this helps put some perspective on things, but when it rolls round to my cancerversary – the day I received my diagnosis – I don’t celebrate big with it, but I do treat myself to a nice meal, sometimes with friends, and use it as just another opportunity to vocalize (by voice or writing) my gratitude for still having a life to live as well as for the people around me that have helped me along the way. My bigger celebration is my remissionversary/stomaversary – the day I had my cancer procedure and received my stoma for my urostomy. Since I had clear margins post op, that is considered my remission date as well. When possible, I plan an entire weekend’s full of events around that date and invite anyone who wants to come to join me to celebrate LIFE. I take note of other dates I had during that time frame as well, but they are more like my cancerversary and are more low-keyed and quiet. I treat myself to a meal or an item I’ve really been wanting.

    Liked by 1 person

    1. It is very helpful – thank you so much for sharing. I try and take stock and be grateful for those I have around me – that really is so important and I am incredibly lucky to have them. It is nice that you find ways to celebrate the occasion. What better thing to celebrate than life! We are so lucky to continue having one, when so many aren’t so fortunate, both against the struggle of cancer and other things. I’ll start taking some of your tips on board (I’m always buying myself treats – maybe I should save it for special occasions only!)

      Like

  3. It takes time to recover from surgery too, long after the visible wounds have closed up. Plus we’re in the slower part of the year, when mental fatigue is more likely to happen, even without a good reason. Give yourself the same patience you would give a friend of they were in your place. If things at a larger scale are not helping you feel at peace, look for the smaller and things. There is always a sparkle somewhere that will make your soul smile, even if it’s just for a moment. Take care!

    Liked by 1 person

    1. You’re right – it is always a tough time of year. I’m looking forward to Christmas at least. I hope you are looking forward to some time with your kids and some rest from work xx

      Like

  4. Kate says:

    So glad to hear from you missed your blogs, I’m still going strong 3 yrs since I last had chemo they are amazed I think I was expected to have succumbed by now it will be 4 yrs in March since being diagnosed.Will I be in remission when I get to 5 yrs I asked the question but got no answer so onto the next scan and see what’s happening maybe one day I will get the op which you’ve portrayed as not easy so in the meantime leave well alone while it’s quiet. Thank you I appreciate your in depth analysis it gives me hope.

    Liked by 1 person

    1. Aw thank you, Kate – always nice to see your comments. You are incredibly strong to still be fighting on; it is really inspirational. I hope you get that operation. You’re doing the right thing by staying positive and not letting it get the better of you x

      Like

  5. Kristen says:

    So good to read one of your posts!! Funny thing reading your post I started to think about my husband and how he is at his 2 year cancer diagnosis anniversary today. It got me thinking about how he felt at his one year…. There have been many times where it all feels like a dream and never really happened and then other times the trauma of the entire experience is right there making it hard to breathe. Trying to make sense of it all is really hard and constantly a challenge. He is in remission right now and it’s wonderfully normal, but there is always that inkling in the back of my head thinking every symptom will lead to relapse. We are ‘lucky’ in the fact that he got a ‘good’ cancer. Not like his mom who died after only month from being diagnosed with pancreatic cancer. I guess what I’m trying to say is it’s normal to feel defeated and sad at your new reality. My husband, Mike, has had a ton of different emotional fazes during this entire journey. We tried to make the best of every situation that came our way. With 3 little kids what else can you do? You are STRONG and being strong means some times admitting that your tired and sad and frustrated. Those emotions are real and go with them when they hit. They will fade and you will feel optimistic again.

    Liked by 1 person

    1. I really relate to that ‘feeling like a dream’ comment. Sometimes, when I stop and think about everything that has happened and the ‘new normal’ I exist in, I actually manage to cut myself a little slack. I’m so glad to hear that it is wonderfully normal for you; lets hope it stays that way! It must really change things having children – I get emotional even thinking about leaving my dog. There is so much more at stake. Those last 3 sentences were so lovely to read; thank you so much. All the best to your family and thank you for the lovely comment xx

      Like

  6. Hi Dan
    I do hear and feel your frustration, especially after having the surgery and now more chemo. It does feel never-ending at times. Especially with the fatigue and stomach cramps etc, There were times when even I just wanted to curl up and sleep through most of my treatment( I cried a lot instead) and read your blog. It is really tough especially when you body has to understand what happening with parts of you missing and having to adapt to these changes, then oh no what this stuff (chemo) now. All I can say is that everyday you are living and the cancer is not in charge, It has taken a while for me to build up my strength but everyday I am getting a little bit stronger less brain fog. Taking everyday as my new adventure now.
    Please be kind to yourself and congratulations on overcoming your 1st year.

    Liked by 1 person

    1. It does feel never-ending, you’re right. I’m really glad to hear you’re treating every day as an adventure – we should all strive to do that, no matter what state our health is in. I hope you have many enjoyable adventures in the future, and my challenge to myself is to start embarking on a few of my own!

      Like

  7. Dina Tarazi says:

    Reading your blog has conjured up a mix of emotions in me, most of them making me appreciate even more that you came all the way to be a part of our big day!

    Dan, I hope you celebrate many more cancerversaries. I hope one day every person diagnosed will too.

    – The “wonderful” bride, Dina

    Liked by 1 person

    1. Hey Dina. So lovely of you to comment and thank you for reading my depressing blogs! It was an absolute pleasure to come and see you both on such a special day. We enjoyed Jordan so much that we’ve already booked to come back again this year, and we’ll hopefully be seeing you there too 😃.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s