Results Day: The End of Chemotherapy Scan

The Road to Recovery

Covid Check Mid-Cooking

I woke up earlier than usual this morning. My eyes were reluctant to open, but my brain had made up its mind. Time to get up. I searched for my phone with one eye half-open; the other one hadn’t got the memo yet. Sunlight was peering through a gap in the curtains so I knew it wasn’t too early. 5:58. Ok, it was earlier than I thought.

Lucy the puppy was snoring and I could feel her body heat against my leg. She likes to sleep underneath the sheets, either in between my legs or between Anna and I. Sometimes we go to sleep with her in the bed, then wake up and she’s in her own bed on the floor, fast asleep. We used to wonder what we did to insult her during the night, but now we tell ourselves that she was probably too warm. I think it’s Anna’s snoring personally, but I do have a tendency to move a lot in my sleep so it might be that. Maybe I’m always dreaming of being a ninja, spin-kicking cancer in its ugly face. If that is the case, I haven’t remembered a second of the dreams. Maybe one day I’ll remember it all and experience it so lucidly that it feels like it is really happening. For a few hours, I’ll be content, beating up cancer with no regard for poor Lucy in between my legs. She’d experience each kick as a sudden jolt and eventually decide she is safer in her own bed. I’d try and fight the urge to wake up in the morning, reluctantly doing so in the end. “You were moving a lot in your dreams again,” Anna would say. I’d smirk to myself – “I was kicking cancer’s ass.”

The appointment with the oncology team wasn’t until 15:15. Before that, I had a bloods appointment scheduled for 14.15. That means that we didn’t need to leave the house until around 13:15. I knew I had time to kill, so I made a few plans in the morning to keep myself distracted. Those plans didn’t account for me waking up at 6:00am. They expected an easy-breezy wakeup time of 8:00, maybe even 9:00… make sure I’m well-rested for the big appointment – ready for any adrenaline hikes or dives that may kick in. 6:00am was unacceptable. I got up and went to the bathroom, then came back to find Lucy had gotten out of the bed and gone into her own. Proof – it was Anna’s fault all along, not my sleep-kicking. My only fault had been going to the bathroom…which meant I had moved…which may have disturbed her into going into her own bed…damn, maybe the evidence isn’t as conclusive as I thought. Luckily, I then slipped in and out of sleep until about 7:20. Better, but not perfect.

Once I got out of bed, I fumbled around the house a bit – cleaning this plate, playing with that dog. I then settled onto the sofa to watch a few YouTube videos. I can waste an impressive amount of time on YouTube. If it was a sport, I’d be in the regionals at least, maybe even pushing nationals. This session was short-lived, as my mum rudely interrupted me – “Want to do yoga, Dan?” she asked in her incredibly polite, caring and enthusiastic tone. “Yes, I’d love to,” I replied. How dare she suggest doing something useful with my time; I proceeded to get the yoga mat out, feeling deeply offended.

I then showered, before heading to ProCook with my good friend Jack. We’ve known each other since I first moved to Alsager when I was about 9 or 10. For all those years we spent playing on his farm, going to gigs together and attending football games, we had a first today. We’ve never been to a cooking store together. Who would have guessed it? He was after a set of knives, and I was flirting with the idea of purchasing a new baking tin. Adult life is one hell of a ride. Jack got his knives, and I left disappointed. They only had 23cm tins and I needed a 20cm one. I hoped this would be the only emotional turmoil I’d experience today, but there was a certain event lingering in the air that was threatening to topple it. I should probably just move on to the exciting bit, shouldn’t I?

We got to the hospital at around 14:00. Anna and my mum found a spot in the cafe, whilst I went and signed in at the desk. It was the receptionist that knew me well. For the first time ever, I approached and she simply said “Hey Daniel. Bloods and a meeting with your consultant today, correct? You’re all checked in.” Usually, you have to reel off your name, date of birth, home address and confirm that you are at the same GP surgery. I had to check if my mouth was open I was so shocked. So this is what it’s like to be a local at your local pub? You walk in to be greeted by a smile before someone tells you exactly what you were just about to order. I’ve never got to that level of familiarity before. It felt good. I’m going to start drinking in my local pub more.

I remember learning about pathetic fallacy in English when I was in school. The teacher used a scene from a film to help explain the concept. It was a sad scene, and as the actor sat there crying, the shot panned to a storm outside the window. She said that the weather was being used to emphasise the human emotion being displayed. This was called pathetic fallacy – the use of non-human elements to express or emphasise human emotions being portrayed in the scene. As we sat waiting for my name to pop up on the appointment screen, I couldn’t help but notice that it was torrentially raining outside. It had been sunny earlier in the day. I hoped this wasn’t a reflection of the results to come; if it was, there was a higher power mocking me today. That higher power was probably also responsible for giving me the cancer in the first place, so it was most definitely not the worst thing they’ve ever done to spite me. Perhaps it is the kind of humour I appreciate – the thought alone made me chuckle a little bit in a cynical kind of way.

The bloods appointment was approximately 30 minutes later than planned, which is reasonable. It went fine – we chatted about my tattoos and I complimented a few of hers. She told me that the one on her arm cost her £13 because her local tattoo shop does random tattoos for £13 on Friday the 13th. I remember my best friend Luke telling me about that once; it’s quite a funny concept. As if I needed more proof that blood nurses were vampires – this one brought up Friday the 13th out of nowhere. She’s mocking me… She managed not to lick her lips too obviously as she pulled the blood from my veins. I did notice her getting a little bit excited, though. She thought I hadn’t noticed, but I see everything with these monsters. I counted the canisters of my blood before walking out of the room – she had filled four. Is that a light snack or an evening meal? One day I’ll just ask, I’m sure they’re happy to chat about it once they know that the secret is out.

I made my way back to our spot in the cafe. More waiting, more rain, more anxiety. It was building fast now. My stomach was feeling tighter and I was getting restless. Finally – my name popped up. We made our way to consultant room 18. The nurse took my weight – 76.2kg – checked my blood pressure – a little high but not concerning given the context of the meeting – then she left Anna and me to the confines of the office. Nothing left to say, nowhere to hide. Approximately ten minutes later, the oncologist entered and introduced himself. Here we go…

In summary – the results were not bad. He stated this quite plainly as he began. “I don’t have any bad news for you today,” he said. I think those words may have been more reassuring in his head. In reality, that immediately said to me “he doesn’t have good news for you either, Dan. Prepare yourself,” and I was right to think that – he didn’t have any decisively good news to give us. In fact, I learned something that has worried me quite a lot, but I’ll come back to that.

The tumour has not shrunk any further since the halfway scan. My tumour markers in my blood are very low, which he emphasised was a good thing, but the main tumour seems to have stabilised at 2.1cm. That means I still have a net reduction in tumour size over the whole of my treatment, but it was disappointing news. The thing that I learned which worried me was in regards to what has previously been called the ‘cyst’. There had been mention of a cyst throughout the period when the doctors were trying to diagnose me. At first, it was the cyst causing all the problems, then the cyst had given me pancreatitis, and then they stated the cyst may have a soft tumour on it. The last time I heard about it was when I was finally diagnosed with pancreatic cancer at King’s hospital in London. I had asked the doctor who delivered the diagnosis if the cyst was in fact the tumour, but he had told me to forget about the cyst as it is no longer important. The oncologist today told me that they did not know what this “mass” was, but that it had reduced in size slightly. He said this could only be a good thing, but what concerned me was the whole ‘not knowing what this ‘mass’ actually was’ thing. Apparently, they know it is full of liquid, but they do not fully understand whether it is another tumour, whether it is a cyst with a bit of tumour attached to it or any other infinite amount of possibilities (the last part is my own interpretation). Hmm, concerning.

He told me that the case is being handed to the surgeons at Manchester Royal Infirmary and that if I do not hear from them within a month, to contact my surgeon’s secretary. That was it – that was the news. It felt extremely deflating, both because we did not get any news which felt overtly positive, but also because we had misunderstood the process again. We thought we would be getting more information on the next steps, but all we were told was that my team of surgeons will review the case and make a decision on what is next then contact me. That may be fully removing both the shady ‘mass’ and the tumour in surgery, which would be best, or it may be some lesser version of that, perhaps using the Nano-knife technique instead. I asked if anything but outright removal would be with a view to extend my life only and not cure, but he couldn’t answer as he was not sure. There were many things he couldn’t answer because he was not a surgeon. It makes sense, it just wasn’t what I expected. I thought The Christie managed my case, and the surgeons get involved in it when they are required. If that was the case, it would be reasonable to assume the oncologists would be able to answer more of the questions. That is not the case, though, so I understand that the oncologist’s role is now to hand over to the surgeons who will take the lead on the next part.

It was hard to not feel deflated. We were all upset as we left the hospital – knowing that we should feel positive overall but also feeling like we hadn’t quite got the final hammer blow that we wanted against the tumour. Now more waiting, and not knowing whether the next meeting will be when we find out the next steps, or if that meeting will be another ‘we need to discuss this further before making a decision’ type of meeting. The journey home was long and the traffic was terrible as it was rush hour. We didn’t speak a lot in the hour and a half it took.

As I got in the car, I’d just played whatever was last played on my Spotify. It was the ‘Moody’ mix playlist that Spotify makes automatically for me – perhaps not the best choice given the context. At one point, Bon Iver’s Holocene came on, which is a song I always find very emotional and moving anyway. I sat listening to him sing the words “And at once I knew, I was not magnificent,” and found it hard not to buckle under the weight of the situation. The song conjures up a lot of emotion in me at the best of times, but it felt extra hard to process during this moment. I’ve always found it strangely comforting too, though. The lyrics mean different things to me at different times. Today, it reminded me that I am another person trying to fight cancer, hoping I’ll have plenty more years to enjoy with my family, fiancee, friends and my dog. I want to see my siblings get married and have children, I want to buy a house in the countryside, push for a better job, support my friends when they need me, run 100 miles just so I can say that I could, and did. I want to see my parents grow old and be there for them as they do. None of it feels as tangible anymore; it feels like a far-fetched dream, as if I am asking to win the lottery. But I’m not magnificent and neither is my story – there are thousands of people attending appointments at The Christie every day who are suffering and hoping for the same things. There have also been tens, maybe hundreds of thousands who have hoped for the same things walking around that hospital’s corridors. A lot of them will have gotten their wish, but there are many who didn’t too.

So, as the chemotherapy fog gradually clears over the next few weeks, I walk into a new sort of fog. No longer under that cover of protection that chemotherapy offers, I’m forced to address new realities about the future. Whilst on chemotherapy, you have a specific battle to refer to. You have side effects, illnesses and symptoms to fight. You feel like you’re in a struggle, and although that struggle sucks, it is real and you know it is for the best. There’s a number you can call whenever you need help, where someone picks up quickly and reassures you, telling you where to go and what to do. I didn’t realise that at the end of chemotherapy, I’d actually not be under the care of The Christie anymore. Now, The Christie is writing a referral to Manchester Royal Infirmary, who will be the new custodians of my case for the foreseeable future. Of course, this is a good thing. It is the next step in the journey, and a full removal of the tumour is still on the cards. It just feels like a shock and I’m struggling to come to terms with it. New faces, new processes, new unknowns. I’ll adapt to it, I know I will. It just leaves you feeling stupid – like you should have realised that this was the case, but you didn’t because you didn’t listen closely enough or weren’t smart enough to comprehend it. I’m getting the same self-critical feeling about the lack of positive progress in the second half of the treatment cycle – was it my diet, the fact that I couldn’t exercise as much over the past 3 months, did I not sleep enough to allow the chemotherapy to be as effective? It all feels like my fault, and now I’m paying for it.

Whatever happens, I know that I have incredible support around me. In reality, the news today was always going to ultimately be that it is now being passed to the surgeons for review and they will decide the next steps. I know that, but it doesn’t make it feel any better. We didn’t walk away with a big headline – THE TUMOUR HAS SHRUNK. Instead, we walked away with more questions and fewer answers. But it is back to being patient and embracing the unknown. The chemotherapy did shrink the tumour overall and even managed to shrink the unknown ‘mass’ too. Just focus on that and hope that the surgeons decide they can get the bastards out. If they can’t, hope that whatever path we are embarking on is still one that leads to being cured, not just being made to be ‘more comfortable’. After all, Nigel’s story tells us that there are people who are magnificent, and I haven’t been fully excluded from that category yet. The sun came out as we waited in traffic on the way back from the hospital – that higher power really is mocking me today. Maybe it’s in jest, communicating that things are going to be fine. Let’s hope so.

Scan Day

The Road to Recovery

Saying Bye to Lucy Puppy This Morning

The day has come again…. attending the CT scan at the end of phase one of treatment. My last scan was at the half way point after 6 chemotherapy sessions, at the end of February, and produced good results. My tumour had shrunk from 3.2cm to 2.1cm, my tumour markers had come down considerably and the tissue around the artery was looking ‘healthier’. It was positive, but I struggled to allow the news to settle in as we left the consultant’s office. Anna cried immediately. I suspended any positive feelings I had. I’m not sure if it ever sank in fully. The results were then taken for review at the MDT meeting, a cross-functional meeting including those all-important surgeons, who still determined that I wasn’t surgery ready. It felt disappointing at the time. It wasn’t disappointing, though. I haven’t spoken to anyone who has had their chemotherapy interrupted because they were surgery ready. I’m sure it happens, but if the chemotherapy is working, why not continue? It wasn’t the reasoning that the oncologist gave as he relayed the decision to me at the time, but it is the bright-eyed-bushy-tailed interpretation that I decided to translate it into. That argument for continuing with the chemotherapy could be applied ad infinitum, I guess. Perhaps I shouldn’t suggest to the oncology team that I am happy to do chemotherapy forever. They may class it as a clinical trial and keep me in a cage to observe me. “He seems a bit distracted today and he hasn’t showered in 6 days. It’s quite disgusting,” they’d say. “I understand you, you know. I’m not a rat,” I’d respond, laying in my wheel like it is a hammock. They’d give me a funny look, write something in their report and walk off together in their white coats.

I find myself starting to write this post in the CT Scan unit (Department 11) of The Christie, drinking my dye drink every 15 minutes and acting like I own the place. It’s funny how much bravado you can bring on only the second time you visit a part of the hospital. I caught myself showing off that I knew the process. The nurse took me into a private room just after I arrived to do the introductory survey. Before she got to the questions, I said “I asked the district nurse to leave my line in yesterday, so you guys don’t have to use a new one.” What a hero I am. I’m sure she’ll be telling all of her friends about me for the rest of the week. “What a forward thinking-gentleman,” I imagine her saying to the team later, out of earshot of the rest of the room. Perhaps I should tell her about my blog, too. Although, I’m sure she doesn’t want to read about cancer to unwind from her job where she stares cancer in the face all day, every day. Maybe I’ll just tell her I’m a writer; that’s a cool thing to say, right? I can even say I’m published! Ok, I’m not going to say any of this, but it’s fun to pretend. She’s probably already forgotten about me in reality, and that’s the way it should be.

The nurse asks you what flavour dye you would like after you have completed the induction questionnaire. I go for blackcurrant, but the aniseed flavour easily cuts through it. Why are 95% of oral medical consumables flavoured like aniseed? (Please Note: statistics are not accurate and have been made up by the author). You are instructed to drink two cups of the dye straight away, then have one more every 15 minutes until you are called for your scan. It works out as approximately 900ml of liquid in one hour. I made a bit of a fool of myself as she handed me my bottle and cup. “It’s just one cup every 15 minutes, isn’t it?” I only phrased it as a question to hide my confidence; showing off was my prerogative. “Yes, but you need to drink 2 cups straight away too.” Damn, Daniel – you forgot about the initial 2 cups. She’s not going to read your blog now – any cancer clout you had, you just lost.

That wasn’t the end of my over-confident adventures in department 11. A woman asked a gentleman next to me in the waiting area if she needed to take off her jewellery. He responded saying he wasn’t sure but he thought so. I then cut in, confident as an ox and ready to dish out more knowledge on the lucky souls who happened to be in the waiting room with me that day. “Yes, you take it off and then leave it in a locker around the corner. They let you do it before you go in for your scan.” This wasn’t my first rodeo. She smiled and thanked me. “No problem, I responded.” BatDan strikes again. Just an ordinary man with an extraordinary appetite for helping others.

The nurse called me about half an hour later, once all of the dye had been consumed and I was ready for the scan itself. I followed her to the next waiting room, which is situated outside of the room where the CT scan takes place. A few minutes later, she calls me into a private room to flush the line that is attached to my port, and ensure it is working. The nurses flush the line using a syringe with a saline solution inside. They attach it to the end of the line, and then push it into your bloodstream to ensure that the device is working properly. Once they have confirmed it pushes in, they use another syringe to pull out some blood. It is unusual at first, but you get used to it. The saline solution is usually cold, and you can feel it as it makes its way into your body via the port in the chest. Watching them then pull blood out of you makes you feel awfully human. All of those lessons in science really told the truth – we’re just skin, bone and organs with blood circulating around us. Who knew? I was sure I was above it all. Maybe I’m not indestructible. I mention to the nurse that I need to take off my ring, watch and bracelet. “You’re only having your chest, abdomen and thigh scanned so you will be holding your hands above your head. You can leave all of your jewellery on,” she said, to my dismay. I seem to be full of bad advice today – I need to learn to keep my mouth shut.

Fifteen minutes later, I was called into the scan room. The reason that you need a line in during the CT scan is so an additional dye can be used during the scan. I’m not sure what the difference between the two are, I just do whatever the doctors tell me like a good student. The dye that is provided intravenously carries a warning – it feels warm around your genital area as it is pushed into your body. You are usually put through the CT scanner once without the intravenous dye, then the second time you receive a warning that they are issuing the dye and you may feel an ‘unusual sensation’. What they are referring to is the feeling that you may have wet yourself, but you haven’t. It is just a strange feeling of warmth around that area. It is quite disconcerting the first time – you get used to it by the fourth (I’m showing off again, aren’t I?) I’m unsure if it happens to both men and women, actually. The whole thing is very unusual, but over very quickly.

That was it. Another progress scan completed. I met my mum and Anna in the M&S cafe in the main part of the hospital. Our number 1 cheerleaders were waiting there with them – Nigel the Pancreatic Cancer Killer, his daughter Julie and his wife Mary. They all read the blogs (perhaps not Nigel, but I forgive him), send me lovely presents regularly and even come to the hospital to support me, like they did today. Not a bad group to have onside when you’re going through something as traumatic as this. We sat and chatted for an hour and a half before deciding to give the rest of the customers some peace and quiet, and go our separate ways. It was a nice way to round off the afternoon.

I’ve been feeling unusual today if I’m honest. It isn’t nerves, I don’t think. The scan itself is almost irrelevant – you have to show up, follow the instructions and then you’re on your merry way. The letter scheduling the follow up appointment where I will receive the results came through this morning, though. Thursday May 26th. I thought I had more time to enjoy the bliss of ignorance. The oncologist said it’d be 2 weeks which would have been the following week, but he probably meant within the next 2 weeks. It should have gone to the MDT meeting by then at least, so what I will learn in that meeting will really determine the next phase of treatment. It may have thrown me, though, as I wasn’t expecting it to be next week. I’m glad it is – the sooner I know, the better.

The other thing is that it is early in the cycle for me to be being so active. I usually have a few days before I have any time constraints or commitments, such as hospital appointments. My chemo-fog brain feels like it is operating on auto-pilot. It may explain my inexplicable ramblings about the nurse at the start of the post, but I’d probably do that anyway if I’m being honest with myself. I’m now sat at home reflecting on the ongoings of the day… all I need to focus on now is pushing through the cycle and getting to that results appointment.

Before I finish the post, my Fiancee Anna and her best friend Sophie are running their first half marathon this weekend. They are raising money for The Christie, the incredible hospital that is providing my treatment. I’ve always been fond of the below lyric ever since I first heard it, and it feels relevant here. The band is a christian metal band that you are unlikely to enjoy, but you don’t need to enjoy the music to appreciate a well-written lyric. Those of you who have followed the blog for a while have likely experienced the breadth of my musical interest – I will listen to almost any genre to find something new and interesting.

“The walls of a church don’t make it holy.

It’s what’s authentic that completes the sum of it’s parts”.

The intention of the writer is to give credibility to his religion, I believe. The sheer act of building a church doesn’t make it a special building, it is the value that is then applied to it by the people who believe that it is of greater meaning than another structure. They use it as a place of worship and it represents something more to them – these practices elevate its status and create authenticity.

I feel the words are so applicable to The Christie, too. There are many things about a hospital that provide it with authenticity – the qualifications required to work there, the complex equipment used inside and the knowledge that you went there that time when you broke that bone, and you left with a solution that ultimately fixed it. The Christie adds another layer of authenticity, though. The staff, and the way that they talk to you and treat you, is unlike any other hospital I have set foot in. You feel that they care about you, and it doesn’t seem like an act. I’ve had so many deep, interesting and meaningful conversations with the staff at this hospital. They’re always ready to support you, whether that is having a laugh or sitting down and digging deeper into what is upsetting you. Sometimes, you just want to be treated like a human, not another roadblock to someone leaving work. At The Christie, I’ve never been made to feel like anything but a valued customer in a complex ecosystem, which is full of charged emotions, tough revelations and, sometimes, utter despair. It is an incredible place, and I’m so proud of these two for raising over £1300 for them already.

I will raise money for them myself eventually, when I am healthy enough to do so. For now, I will include the link to Anna and Sophie’s fundraiser here. If you can donate, please do. If my requests to donate to fundraisers is preventing you from turning your gas on this month, please do not. I don’t want to carry the weight of that burden – I’ve already got pancreatic cancer, didn’t you know?

Smooth Seas Don’t Make Good Sailors

It has been a week of luxuries so far. I spent yesterday afternoon getting a special massage for cancer patients before spending the evening in a beautiful spa. My sister and brother in law got it for me for my birthday. They also paid for Anna and my mum to come along, and Anna also got some treatment. It certainly was a treat. I’ve only ever had sports massages, so I assumed all massages were an exercise in masochism and self-perseverance. Certainly not the case for a chemotherapy massage. I lay there with my eyes closed, listening to a backing track of birdsong and harp. The biggest issue was trying to stay awake. It was lovely. During the middle part of the massage, I spoke to the masseuse about my cancer. “I think patients with cancer should get massages free on the NHS. They need them more than anyone.” I’m sure she was just trying to please me, but it worked. She should run to be prime minister; I’d vote for her.

I should have predicted that something would disrupt the positive wave I’ve been riding. Last Thursday, I learnt that my tumour had shrunk and that the tissue around the artery looked healthy. My case was put forward for discussion at the MDT meeting yesterday. This is where it is discussed with multiple disciplines, including the surgeons. I got the follow-up phone call today. The decision is that I am not ready for surgery. I’ve been sentenced to completing the entire chemotherapy cycle – another 5 sessions (totalling 2.5 more months of treatment). Following this is another CT scan at the hospital, another meeting to review the results, another wait for the MDT meeting to discuss, and another call where I either get the green light or a discussion on the next techniques we’ll be harnessing to get me ‘surgery-ready’. In tune with the blog’s name, I’m experiencing the ebb and flow of cancer. It’s exhausting.

I should have been prepared for this; I’d even convinced myself it was what I wanted. “I’d rather complete the whole chemotherapy cycle before having surgery,” I said this morning as I sat in a cafe with my mum and two good friends. The tone was confident; I thought I meant it at the time. As the oncologist spoke the words later in the afternoon, I couldn’t help but feel disappointed.

It isn’t that I needed to be surgery-ready per se. There is still a certain insecurity about my position with the cancer that I think I’m fighting against on a more personal level. I still want to hear the experts tell me, “It’s going well”, “You’re nearly there”, and “We’re winning”. Medical professionals don’t tend to operate in a world where such colloquialisms are helpful. Today, the oncologist’s sentences came out like he was reading a legal document: plain in tone and feeling, apathetic to the meaning of the words. It’s fine; it isn’t supposed to be a criticism. They want to deliver facts, and they don’t want you to misconstrue the information they’re communicating. These people also do this all day, every day. You must have to numb yourself to the pain and suffering you so commonly witness; even if you don’t do it purposefully, I assume it will just happen regardless. Suppose my job was to steal milk off children. I’d probably start to embrace my inner-Thatcher eventually and look forward to that sweet, creamy taste, even if it was at the expense of innocent, defenceless children.

Maybe I, as the cancer patient, should be given a form after diagnosis saying, “How optimistic would you like your doctors to be with you?” I can then rate it on a scale of 1 – 5. I like to think I’d go with a 3, a nice grounded 3. I’d be tempted by the 5, though. Let’s see how optimistic these doctors can get. I want party poppers going off every time I walk into my appointment. “CONGRATULATIONS, DAN! You still have cancer, but one day you might not anymore!” the oncologist would say. I’d start crying as they cut the cake, with the word “DANcer” written in icing on it. Other doctors and nurses would come into the room in a conga line and call me boring for not joining in. Maybe this isn’t such a good idea…

The phone call was at about 15:00 this afternoon. After 30 minutes of feeling deflated, sending the Comms out about the surgery (or lack of) via the usual channels and wallowing in the news, I did what I always do to clear my mind… I went running. It felt good; I did my first sub 1hr 10K since being diagnosed. Anna ran the first 6K with me too, which was nice. She wasn’t too happy with the route I planned as she said it was too hilly. If I was being cynical, I’d tell her that she would call a route too ‘hilly’ if it had too many curbs that she had to ‘climb’. Luckily I’m not a cynic, so I’d never say that. A shoutout to Lucy puppy too, who provided plenty of cuddles during the 30 minute wallowing period. She’s always there when I need her most. Anna is too, of course. I’m not picking favourites here.

Telling Lucy About the Phone Call

As I ran on my own during the last 2K, the phrase ‘Smooth seas don’t make good sailors’ came into my head. I know the phrase from a song of the same name by the band Neck Deep. They won’t be to everyone’s taste; if you are an avid follower of the blog, you probably realise my music taste is all over the place. Part of the chorus is as follows:

But smooth seas don’t make good sailors,
Jump ship and head for failure,
Find yourself a tragedy,
Slowly lose your sanity

I thought of these lines in my head as I ran along, listening to a completely different song on my headphones. It made me feel better. I’ve already faced so much adversity in my journey with cancer; the news I received last week is highly positive. That is what I need to focus on. Being surgery ready now would have been a total outlier, and I’ve had my fill of positive news for now, back to the struggle.

To refer to this as a setback would actually be insulting to real setbacks in life. I fell into a bit of a trap. Last Thursday I received very good news; news so good that I wasn’t expecting it. That meant some part of my brain, beyond the part I can control, really expected the good news to continue coming. I really felt prepared for anything in my own head and thought I was reserving any preconceptions of what may happen today. Unfortunately, that was a lie to myself. I REALLY wanted to be surgery-ready, and I knew that deep down, but I didn’t admit it to myself. I wanted to be told that the chemotherapy was over. I wanted to finally face the next horrible step towards being in remission, the major surgery. But, this was a reality check. From every survivor that I have spoken to who were inoperable before starting treatment, none of them was surgery-ready before completing the full 12 sessions of chemotherapy. This is the common road to tread; there is barely a disruption to speak of with the news today. Sometimes, the reality of a situation does not stop you from feeling a certain way, though. I felt disappointed as I heard the words. I had to let that feeling simmer.

I feel like I’m bouncing back, though. I’ve had a lovely extra week off chemotherapy after a tough cycle. My birthday weekend, when I was expecting to be having chemotherapy, was full of fun, family and friends. This week I’ve felt the best I have since I first went into the hospital. My energy levels are better than ever, and I’ve been thriving off the positive news last week. Now, it is back to reality. 2-week treatment cycles, mouth ulcers and uncertainty over the future. It’s all good; I just need to get back into the swing of things.

In other news, I recently mentioned that the local paper, The Chronicle, had contacted me about my Run 40 Campaign, but I hadn’t heard anything else about it. It turns out that the story was printed but has not been put on the website. Today, a good friend I met through the blog met me for coffee and gave me a gift. She had framed the article I did not know existed. What a wonderful and incredibly thoughtful thing to do! I’m not sure if you’ll be able to read the article from the picture below, so I’ll also include the PDF for those who want to read it. The author regularly refers to me as Mr Godley, the only taste of being a teacher I will ever have in life. I’m not sure I like it. Good job I have no desire to become one; I’ll leave that to my younger (and far brighter) brother, Greg.

Article in The Chronicle

Scan Results (World Book Day)

Pre-Scan

I’m organising this blog post in a bit of a different format. It is currently 10:15am in the morning. I am setting off for the hospital at 11:15. My standard bloods appointment is at 12:05, then my appointment with the oncology team is at 13:00, where I will speak through the scan results. I thought I’d write a little bit now before I set off to capture how I am feeling and share a few thoughts, then I will write about the results later on.

Today is World Book Day. For some reason, I find myself identifying parallels in the universe a lot these days. In my ‘The 1%‘ blog post, I drew a parallel between the 1% movement and the statistic that 1% of people diagnosed with pancreatic cancer survive past the 10-year mark. Today, the parallel I have found is that it is World Book Day, and I will be receiving my first progress scan results today; I will then write about it in the blog and hope to eventually turn it into a novel. The novel may not be the exact story of what has happened to me, but it will certainly draw on my experiences. Today is a massive part of that experience.

At this point, it is worth highlighting my brother’s costume for World Book Day. He is a science teacher, and his department’s theme was Alice in Wonderland. Obviously, he dressed up as Alice, as you can see in the terrifying yet hilarious photo below. His face is a bit messed up as he fell off his bike at the weekend and had to go to A&E.

Greg’s World Book Day Costume – Greg in Wonderland

With regards to today’s scan, I’m feeling calm. I’ve had a lot of messages over the last 24 hours from people wishing me well, which has been really lovely. Thank you to everyone who has reached out! I’m in full stoic mode today, feeling very aware that the news is the news, and I can’t do anything to change it. It may just be easy to say that now as I am sat philosophizing about the situation, and perhaps it’ll be more difficult to put it into practice when I am sitting and listening to the news. It is definitely hard to put it into practice when I am waiting for my name to show up on the screen in the waiting room. This was the part of the process that broke me the first time I attended one of these meetings at The Christie. There had been too much waiting, it was an hour past my planned meeting time, and I just couldn’t keep off the weight of the situation. I had a bit of a breakdown in the office once we were in there and could feel the pressure building up in my head. That isn’t to knock The Christie’ they are running a very complex operation and balancing so many vulnerable people in one building. But the tardy appointments add another layer of stress to the process. Hopefully, now that I am aware that this is a risk, I’ll be able to manage it better today.


Post-Scan

The headline is: the tumour has reduced in size! From 3.2cm to 2.1! The specialist also said that the tissue around the artery is looking healthy. We now have to wait for my case to be discussed at the next MDT meeting on Wednesday. There are surgeons in this meeting who will review it, decide whether I am ready for surgery, then come up with a plan for doing it (if that is the decision). I will then find out what has been decided on Thursday next week via a phone appointment. My tumour markers are also at a low of 264 apparently, which sounds a lot better than the 16,000 figure that they started at.

As the nurse told us, Anna had to clarify with her. “So this is really good news, right?” The nurse responded, “yes, it’s really good news,” before Anna burst into tears. We are both still in disbelief, really. I’m not even sure the news has sunk in for me. I’m so used to having a high wall up and trying to keep myself level-headed that I feel like I cannot quite enjoy such a positive outcome yet. Of course, I still don’t know for sure that I am surgery-ready yet, but we have all of the best signs there that I will be approved. Even if I wasn’t, the tumour has reduced dramatically, and the tissue around the artery is well on its way to being healthy, which will allow me to do surgery.

The next piece of good news is that they have delayed my chemotherapy treatment by a week to let my mouth settle down from the ulcers (and allow me to enjoy my birthday)! After I complained profusely and allowed her to look in my mouth with a light, she agreed that it would be good to give it some time to settle down. I think she actually felt sorry for me and wanted to provide me with some relief on my birthday weekend, which is fine with me. I’ll play the victim if it gets me what I want… like a petulant child.

There are so many people that I wanted to message directly. It is just too challenging to keep up with everyone I should message at the minute, though. Although it is amazing news, I feel like I need to keep myself grounded and focused. Even with the best-case scenario, there is still a major operation to go, a big recovery, and likely more chemotherapy. Then, assuming that all happens and there are no issues, there are the regular checks and the fear of the cancer returning. It is far from over, but it is terrific news that I will hold tightly to my chest! Thank you to everyone who reads the blog for all the support so far. To anyone dealing with cancer, I hope this brings you some hope in your fight. The lows really are awful, but I can now confirm that the highs are really incredible too!