From Diagnosis to Determination - Oesophageal Junction Cancer Diary

  Chemotherapy isn’t one event. It’s a process — repeated, relentless, and cumulative. Having seven chemotherapy cycles back to back is not just about getting through treatment days. It’s about enduring weeks and months where recovery never fully catches up before the next round begins. As you might remember, tony's chemo was suspended in January as it caused a ''Heart Event''. We found out that he was ''handling the chemo so well'' that rather than having 4 post op chemo cycles (the normal amount) oncology added the missed cycles from January onto his post op chemo treatments. At first we thought this was a negative, maybe they think something is wrong, but they've explained it's simply a way to cover all babes and get the most from treatment. The first cycles: bracing yourself The early cycles often come with a strange mix of fear and determination. You don’t yet know how your body will react. Side effects are talked about in lists —...

  Understanding What’s Happening — and Why It Gets Better Recovering from Ivor Lewis surgery is a journey of adjustment. While much of the focus is rightly placed on healing, eating, and regaining strength, many people are surprised by changes they experience around blood sugar levels and dumping syndrome . These symptoms can feel frightening, frustrating, and confusing — especially when they arrive unexpectedly. Understanding why they happen can make them easier to manage and far less alarming. We had something of an upper hand in living with this as both my brother and I are type 1 diabetic, with a combined experience of over 40 years, we were more than prepared to recognize, and deal with, blood sugar changes. Read more here.   How Ivor Lewis surgery changes digestion Ivor Lewis surgery fundamentally alters how food moves through your body. Part or all of the oesophagus is removed, and the stomach is reshaped and repositioned. The natural “storage” and controlled rele...

  Ivor Lewis surgery is not just an operation — it’s a life-altering event. For many people, it represents hope, survival, and a chance at life beyond cancer. But what often isn’t spoken about enough is what comes after the surgery. The long, complex, deeply personal process of recovery — physically, emotionally, and mentally. Recovery doesn’t begin the day you leave hospital. In many ways, that’s when it truly starts. The early days: learning your body again After Ivor Lewis surgery, your body feels unfamiliar. Eating is no longer instinctive. Hunger cues change. Portions become smaller. Fatigue is overwhelming in a way that sleep doesn’t fix. Simple things — standing, walking, breathing deeply — can feel monumental. Pain may come and go in unexpected waves, and progress is rarely linear. Good days can be followed by setbacks, and that can be emotionally tough to process. Patience becomes essential, even when it feels impossible. Food, weight, and trust One of the biggest...

 I will be posting an update on a what to expect day to day with all of this, both from the patient's and the other person's perspectives. Before i head into writing those though there's something i feel is really important to share. Maybe someone can learn from my mistakes. We felt reallly prepared going into surgery week, we had done lots of research on the procedure, recovery, medical terms used, what pipes ro expect post surgery, monitoring for issues or complications. I'm not taking anything away from the brilliant people who work in our NHS, or drawing a paralell between me on the good old google, and someone who had an education and career in this field. Tony and i are both very information driven and ready for pretty much anything. I felt prepared. I forgot one part of all of this... I approached Tony's operation clinically, I didn't approach it as the partner of someone who was about to undergo a life changing major operation. I'm very lucky in that...

 A cancer diagnosis brings a wave of emotions—fear, hope, uncertainty—and one of the most important aspects of navigating treatment is understanding the options available. Two terms often discussed are curative and palliative treatment. While they serve different purposes, both play a vital role in improving quality of life and ensuring the best possible care for patients. Curative Treatment: Aiming for a Cure Curative cancer treatment is designed to eliminate cancer completely , giving a patient the best chance of long-term survival. The focus is on removing or destroying all cancer cells, preventing them from returning. This may involve: Surgery – Removing a tumor and surrounding affected tissue. Chemotherapy – Using powerful drugs to kill cancer cells. Radiotherapy – Targeted radiation to shrink or destroy tumors. Immunotherapy – Boosting the body's immune system to fight cancer. Curative treatment can be intense, with side effects such as fatigue, nausea, and a long recov...

    As you'll have read in my last post, I made the mistake of being too clinical in my approach to this whole thing, and the emotional and mental impact of this whole thing hit me like a train. Just as a warning, images of Tony's wounds around 7 days after surgery are shown further down in this post, I will warn closer to the time in case anyone doesn't want to see. They will be at the very bottom of the blog with a huge warning before hand.  I'm going to compress the surgery week into one blog and break it down day by day. Tony's hospital stay was for a total of 9 days, the average is 10 to 14, but many get discharged as early as 7 days post op. It all depends on how well the patient is healing. Tony's brother and partner arrived over from abroad the night before surgery so the 24 hours pre op were pretty crazy too! A brilliant way to take our minds from what was coming next. They were staying with us for 2 weeks, which was good for me as I wasn't coming h...

Embarking on the path of esophageal cancer treatment can be daunting, with surgical interventions often being central to the journey. One such procedure, the Ivor Lewis esophagectomy, stands out due to its complexity and significance. Let's delve into what this surgery entails, its purpose, and the road to recovery. What is an Ivor Lewis Esophagectomy? An Ivor Lewis esophagectomy is a surgical technique primarily used to treat cancer located in the middle or lower sections of the esophagus. This procedure involves the removal of the affected portion of the esophagus and the upper part of the stomach, followed by reconstructing the digestive tract to maintain its functionality. The Surgical Steps: Navigating the Procedure The surgery is typically performed in two main stages: Abdominal Phase : Surgeons begin by making an incision in the abdomen to access and mobilize the stomach. This step ensures that the stomach can be reshaped into a conduit to replace the removed esophagus. Thor...

 Hey! It's been a while! So since we last posted we've been getting ready for surgery. I'll write another post shortly about the surgery and explore that in more detail. We've had 2 meetings with the surgical team since we got the go ahead for the surgery, one with the surgical team, and one with the surgeon who will be performing Tony's operation. I've mentioned in previous posts that compared to the Oncology side of things, the surgical team seem to be a lot less..... Fluffy, shall we say. We had been warned to leave surgical appoinments feeling like you've been hit by a train or swamped with negative stuff, and our first appointment certainly did! The Doctor we saw for the first appointment  seemed to be pushing us towards a palliative treatment plan, rather than the curative one our oncologist recommended. He wasnt happy that Tony hadn't had the prescribed 4 rounds of chemo pre op, and called the surgery ''sub-optimal''. We found this...

 If you’re reading this, you may be getting ready for a PICC (Peripherally Inserted Central Catheter) line removal, or perhaps you’re simply curious about the process. Either way, I want to walk you through what to expect so you can feel prepared. We know that even small procedures can stir up a mix of emotions – relief, anxiety, or maybe just a bit of uncertainty. A PICC line is commonly used for patients who need long-term intravenous (IV) access, whether for chemotherapy, antibiotics, or nutrition. It’s an incredibly useful tool, but eventually, when treatment is finished or no longer needed, it’s time for removal. Here’s our PICC line removal experience. When we arrived, we were taken to a treatment room where Tony was asked to lie down on an exam table with his arm positioned comfortably, as that’s where the PICC line is placed. The nurse  performing the removal explained what will happen in detail for us. The actual removal of the PICC line is a straightforward procedur...

Once again there was an MDT meeting today and a path to move forward. Mel started the call by saying ''I'm calling with what I think is a positive update for you. The surgeons are happy to proceed''  So, our next step is the Ivor Lewis Oesophagectomy we've written about in previous posts. Tony's MRI shows no lasting damage to his heart, no necrosis , (tissue death) no myocarditis (swelling), no blockages and both ventricles are working as they should. We now await a pre op meeting with the surgical team, an appointment to have the PICC line removed.  This part is a bit surreal really, we've always had surgery on the agenda, now that we know that's the next step it's both nerve wracking and really positive at the same time. The Ivor Lewis oesophagectomy can feel like a daunting experience. It’s a major surgery often used to treat esophageal cancer. The procedure involves removing part of the esophagus and sometimes part of the stomach, then reatt...

 So following on from our last update, chemo was paused to allow the round Tony had been given to run it's full course. It wasn't safe to continue with that particular chemo reigme due to Tony's reaction to it. We had a CT scan on monday as the surgical team wanted to see if the chemo had shrunk the tumor any.  There was an MDT meeting this morning and our amazing nurse Mel has called with an update. Good news (bear with me, i'm always searching for the positives). We don't yet know if we're going for a different chemo, or if it's surgery. Now, that could be seen as frustrating or negative, and yes, it's a bit annoying..... BUT, both the chemo team and the surgery team are happy to go ahead with treatment. That means we still have two curative treatment options. Brilliant! The hold up is heart health. Both teams would like the cardiology guys to have a check on how Tony's heart is recovering and go from there. Yes it's another delay, but both tea...

 We were advised before chemo that hair loss was likely. Secretly we thought that because it's been so long since the chemo was given we may have escaped this particular side effect. It is something we've talked about, the idea of it can take a little getting used to. Tony's always said it didn't really bother him if it fell out, because he doesn't have to look at it! It's something I hoped didn't happen.  I know how that sounds. Hang on, i'm not being judgey allow me a sec to explain. I don't care what Tony does to his hair, clothes, it's irrelevant. I was scared of him looking ill, gaunt. That probably sounds really shallow, but it's true. Tony came into our bedroom from the bathroom this morning with a clump of hair is his hand. Clump sounds dramatic, I can't think of a better word though. 10 strands or so. I hugged him and cried fo a moment. He explained it was happening all over his head and he was certain it was falling out and not ...

 As we mentioned in our last post, the first chemo did not go well. A rare reaction the the 5FU resulted in a ''cardiac event''. As a result we had a meeting with the oncologist to explore how we will proceed with Tony's chemo treatment. It's another ''that didn't go as expected'' moment. We discussed what might happen next over the weekend and we expected they'd tone down the drugs used to minimise side effects, we pondered if they'd perhaps admit Tony for future treatments so that he would be in a safe environment should there be any further issues. Nope! The oncologist explained that waht we have experienced is very, very rare. She's only seen it happen 3 times in her career. She explained that treatment would temporarily stop. In that moment both Tony and I tensed. It was another moment in which the world stopped spinning. I asked Tony what he was thinking, I could see the gears in his mind turning. He simply replied '...