From Diagnosis to Determination - Oesophageal Junction Cancer Diary

 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 '...

 Our first chemo experience has been far from normal! As advised Tony started his steroids the day before chemo ( dexamethasone ). Steroids are given to take the day before, the day of, and the day after chemo. Our understanding is they help with the side effects and will giveTony a bit of a boost. It's advised to take them at breakfast and lunch as they can cause insomnia if you take them too late in the day. We arrived at the chemo ward nice and early. We took plenty of layers for Tony, aware that the chemo would cause an extreme sensitivity to cold, lots of snacks and a book to read as we were expecting to be at the hospital for up to 6 hours. We were taken into the chemo lounge which is a really bright and calming space, there's a tv on the wall playing relaxing music, the nurses are all upbeat and friendly. Tony got comfortable in one of the patient's chairs and one of the chemo nurses walked us through what to expect for the day. Tony's PICC line was flushed and h...

 We landed back on the 29th and today we head to the hospital to get a PICC Line fit. A PICC line (Peripherally Inserted Central Catheter) is a long, thin, flexible tube inserted into a vein in the upper arm and guided to a large vein near the heart. It is used for delivering medications, chemotherapy, fluids, or nutrition over an extended period, reducing the need for repeated needle sticks. How is a PICC Line Inserted? A nurse or doctor numbs the upper arm and inserts the catheter into a vein. The tube is guided through the vein until it reaches a large vein near the heart. A chest X-ray confirms proper placement before use. The PICC line is secured and covered with a sterile dressing to prevent infection. The procedure to have the line fit was really quick, Tony was in and out in under 30 minutes. We entered the treatment room and the nurse explained how the line is put in and gave us some guidance on aftercare. Keep the dressing clean and dry to prevent infection. Avoid heavy ...

 Swallowing issues aren't easy to manage, though they are manageable with a little practice. Our advice is to work with food, not against it. Listen to your body. Experiment with food.  For Tony foods with sauces / gravy work best. At home things like cottage pie, rice pudding, ragu, are go to meals and cause little to no issue. That's at home, and we're in Fuerteventura! Thankfully with our break being all inclusive, there is plenty of choice and room to try different foods. For the first day or so, Tony had small portions and samples of the foods on offer. Breakfast isn't something we normally have, so that meal was easy! For both lunch and dinner there was always a selection of pasta and sauces. Tony was able to eat this with ease as he could pile on as much sauce as he wanted to. Soup was served daily while was also a great option for him, alongside sweet treats like rice pudding, ice cream and a selection of cakes. He experimented with other foods that were availab...

 This will be our last post this year, as next week we're jetting off to Fuerteventure for a pre cancer treatment recharge. We have received a letter following on from the Staging Lap which confirms stage T3N1M0, Signet cell Adenocarcinoma. Now that all of the tests and results are in, everyone is happy and treatment can soon start. It's been a rollercoaster 2 months, but we're happy we have an accurate diagnosis, we know exactly what we are dealing with and have a plan moving forward. For now, we hope you're well, look after yourself, have a fab few weeks and we'll be back soon!

 Staging laparoscopy is a minimally invasive surgical procedure used to determine the extent of esophageal cancer and whether it has spread beyond the esophagus. This procedure helps doctors decide on the most appropriate treatment plan by providing real-time insights into cancer staging. Esophageal cancer can spread to nearby lymph nodes, organs, or the lining of the abdomen ( peritoneum ). Imaging tests like CT scans and PET scans provide useful information, but they may miss very small cancer deposits. A staging laparoscopy offers a more accurate assessment by allowing direct visualization of the abdominal cavity. Heading into the procedure Tony's staging is T3N1M0. Why is Staging Laparoscopy Performed? The primary goals of staging laparoscopy in esophageal cancer include: Detecting metastases – Identifying whether the cancer has spread to areas not visible on scans. Assessing operability – Determining if the tumor is resectable (removable by surgery). Guiding treatment dec...

 Following on from our train wreck meeting with the surgeon, we've spoken to our nurse and we're back on the positive train! We voiced our concerns about the ''paliative'' chemo that had been mentioned on Friday. Clinical description: Palliative Chemotherapy is a type of chemotherapy used to relieve symptoms and improve quality of life for patients with advanced or incurable cancer. Unlike curative chemotherapy, which aims to eliminate cancer, palliative chemo does not cure the disease but instead helps to slow its progression, reduce tumor size, and manage symptoms such as pain, difficulty swallowing, or breathing issues. So, in this case, paliative doesn't mean ''end of life'' thank goodness! It's been explained to us that through chemo, if the cancer cannot be cured, it can be contained. They can make cancer a chronic condition that you live with, rather than cure. Our nurse was really understanding when we explained how the surgeo...

 Please be advised, i am not a doctor, or medical profeccional. All blogs are written from our own experiences and research. Your treatment may be different than what is written here. What is FLOT Chemotherapy? FLOT chemotherapy is a treatment regimen primarily used for gastroesophageal cancers , including stomach cancer (gastric cancer) and esophageal cancer . It is often given before and after surgery to shrink the tumor, improve the chances of successful removal, and reduce the risk of recurrence. The name FLOT comes from the four chemotherapy drugs used in this regimen: F – 5-Fluorouracil (5-FU) L – Leucovorin (folinic acid) O – Oxaliplatin T – Docetaxel (Taxotere) This combination has been found to be more effective than older regimens such as ECF (epirubicin, cisplatin, and 5-FU) in improving survival rates for patients with operable gastric or gastroesophageal junction cancers. How Does FLOT Chemotherapy Work? FLOT works by targeting and killing rapidly dividing cancer...

 Having had all of the diagnostic tests done, today we met the surgical team. It was not at all what we expected, we've both left the appointment feeling rather rattled. The team walked us through chemo and what to expect (we were shocked by this as Oncology had already explored this to us in great detail. The good, the bad and the ugly!) Oncology were very thorough, yet positive. From those conversations we felt prepared for chemo and fully aware of what may or may not happen. (I will touch on the chemo in another post) The surgeon however seemed to have her negative pants on. Phrases such as ''this chemo will hit you like a train'' 'it will 'floor you'' ''you will be in bed for days''. Non of which we expected or were prepared to hear. Those sorts of effects were something we were prepared for, however from our previous appointments and conversations with people undergoing this particular chemo, we'd learned that it's a real...

 Dysphagia, or difficulty swallowing, can significantly impact daily nutrition and overall well-being. Managing your diet effectively is essential to ensure adequate nutrition, avoid complications, and maintain a good quality of life. Here are some key strategies and dietary tips for managing dysphagia. Understanding Dysphagia-Friendly Diets Dysphagia diets focus on modifying food textures and liquid consistencies to make swallowing safer and easier. The International Dysphagia Diet Standardization Initiative (IDDSI) provides a framework to classify foods and liquids into levels that accommodate different swallowing abilities: Level 0 : Thin liquids (water, juice, tea) Level 1 : Slightly thick liquids (formula, milkshakes) Level 2 : Mildly thick liquids (nectar-thick liquids) Level 3 : Moderately thick liquids (honey-thick liquids, yogurt drinks) Level 4 : Pureed foods (smooth mashed potatoes, pudding) Level 5 : Minced and moist foods (finely chopped meats, soft rice) Level 6 : Sof...

 Mel called us today with our 'proper' staging. T3N1M0. That's fully understandable to us, but allow me to break it down. Tumor staging is a system used by doctors to describe the size of a cancerous tumor and how far it has spread in the body. It helps determine the severity of the disease, guide treatment decisions, and predict patient outcomes. The most common staging system is the TNM system, which classifies cancer based on tumor size (T), involvement of nearby lymph nodes (N), and metastasis (M), or the spread to distant organs. Staging ranges from Stage 0 (localized, non-invasive) to Stage 4 (advanced, widespread cancer). T - Tumor. What stage is the tumor. For us, stage 3. N - Lymph nodes. How many lymph nodes are affected. For us, just 1. This number can go up to number 4. There are 4 main N stages. N0  means there are no melanoma cells in the nearby lymph nodes. N1  means one of the following: one lymph node N2 : 2 or 3 lymph nodes one lymph node and there are a...

 Okay, so what's a PET scan? When it comes to diagnosing and monitoring cancer, doctors rely on advanced imaging techniques to gain a clearer picture of what’s happening inside the body. One such tool is the Positron Emission Tomography (PET) (Ooohh don't i sound clever!) scan , a powerful medical imaging test that helps detect cancer and evaluate its progression. What is a PET Scan? A PET scan is a type of nuclear medicine imaging that uses a small amount of radioactive material, known as a tracer , to highlight areas of high metabolic activity in the body. Since cancer cells tend to grow and divide more rapidly than normal cells, they absorb the tracer at a higher rate, making them stand out in the scan images. How Does a PET Scan Work? Injection of the Tracer – A radioactive tracer, usually fluorodeoxyglucose (FDG) , is injected into the patient’s bloodstream. Absorption by Cells – The tracer circulates throughout the body and is absorbed by tissues based on their metabol...

 Diagnosed on the 8th, we met our oncologist on the 13th. Sitting in the waiting room is odd, numbing almost. The brain whirls wondering what to expect, what's next. We sat witing with my folder of research and as quick as that we were called in. Our nurse Mel was in the room (very nice to put a face to the voice that had supported us so well this far) and our oncologist. A very well dressed, happy looking man. Instant relief for both of us. Tony and I are both very highly in tune and hyper aware of body language and expressions. We introduced ourselves, shook everyone's hand and sat down. Tony took my hand and squeezed 3 times. I love you. This is positive, everyone is  upbeat, no one is looking at the floor muttering. Our doctor showed us the previous endoscopy tests, allowing us to see the changes inside Tony's pipes and look at the cancer. Literally face the enemy! Dr Gikkas walked us through in detail what had been found so far, he explained that the CT scan showed the...

When life throws you a curveball, you have options. You can't always see them straight away though. Sometimes you have to let the dust settle, which is exactly what we did. Our inital feelings are hard to put into words. For Tony, fear, shock. He's a brilliant problem solver and his first instinct was that he needed to get his affairs in order, plan for the worst.  That's the issue with Cancer. It's scary, we don't talk about it. We hear a stage and assume death sentence. Instantly envisioning hair loss, sunken eyes. I think it's ingrained into us, yet we forget how far treatment and technology have come over the year. I was terrified, anticipatory grief. Intrusive thoughts about what was about to him, Chemo, illness. The fear of losing him, seeing him in pain. Again, negative connotations that instantly jump to mind.  One thing that might sound strange is how the thought or idea of losing the person you love is horrific, it hurts in a way I don't know how t...

 Hey! Thanks for joining us and taking the time to read this. Long story short, if you're looking to read a blog about living with Oesophageal Cancer, you're in the right place! Short story long.... My name's Jo, I'm in my early 30's, live with Type 1 Diabetes and I'm partner to Tony. In November 2024 Tony was diagnosed with Stage 3 Oesophageal Cancer. We've started this blog to raise awareness, our experiences, tips and things we've learned along the way.  The highs and lows, good and bad. Oh and have a good vent every so often too! So how did we find ourselves here? - PS, there's going to be a lot of plurals in here, lots of ''We''. While it's Tony that has the Cancer, I promised him from the start that he won't face a single moment of this alone, and as a result ''we'' have Cancer. Tony has had acid reflux for a long time, years in fact. It's always been managed with over the counter tablets like Nexium ...