Hi everyone,
Thanks for coming to my blog. I hope the information below will shed light for individuals or family members of those about to go through a journey similar to mine. Please do contact me for any questions as I'd be more than happy to answer and elucidate anything, or if you just want to have a chat, I'll be on here every few days when I can to offer my support. I will reply to everyone, but apologies if during my chemotherapy I take a bit longer to reply.
This was originally written from surgery (Feb 20th 2018) onwards, with me updating the blog every couple of weeks. As such, some areas may seem disjointed, some words may be in the wrong 'tense', but hopefully it all makes sense.
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My name is Ali, I'm a 25 year old originally from Edinburgh who now works in London. On the 31st October 2017 (Halloween!), I was diagnosed with Stage 3 Oesophageal Cancer. What led me to this diagnosis was really through my own ignorance, but I also see myself as undeniably lucky. For months and months, I had problems with swallowing food. After my first bite of food, I always felt that after swallowing, the food would get stuck further down my oesophagus, as if my oesophagus was really narrow. Through my misfortune, a family member of mine previously had this problem when I was much younger, and it wasn't cancerous, so I had no idea what the ramifications of not getting checked would be. As a young male, I just didn't want to go see a doctor. The swallowing problem was a difficulty that was only rectified by drinking water - the water seemed to 'push' the food down into my stomach, and from there, I could eat normally for the rest of my meal, but during this process of drinking water to 'push' the food down, I felt like I was suffocating on my food. The relief when the food went into my stomach is indescribable, but looking back, my mistaken choice of not going to get this checked up now drives me to encourage people to go see their GP at any suspicion of illness.
Eventually, I was forced into hospital. On my birthday, on 20th October 2017, I had very dark stool - again, I had no idea that this was serious and because it was my birthday, I took some imodium to stop it. My birthday fell on a Friday night and I celebrated with my work colleagues as you would imagine, lots of drinks and a very late night. A day after my 25th birthday on 21st October 2017, I met up with school and university friends in Central London but I was feeling really horrible. I thought it was just a hangover so I pushed through, managing maybe one pint in total. Not feeling well at all I decided to leave early, but on the train home, I ended up vomiting a large amount of blood (to the annoyance of the train conductor who thought I was a drunk mess). Thankfully, my girlfriend was visiting from university for my birthday so she was with me and she noticed the vast volume of blood that I was throwing up, and I was lucky as an off-duty nurse was in my train carriage. They helped me off (the loss of blood caused me to be very dizzy and faint so I could barely walk), and an ambulance came to pick me up to take me to Croydon University Hospital. I had a stomach ulcer.
After an endoscopy and biopsy to find the source of the stomach ulcer, and after six days in hospital, I was sent home to await results. Then, a few days later, on 31st October, I went back into hospital where a lady told me the news that they had found a malignant tumour at the bottom my oesophagus - Stage 3 Oesophageal Cancer (more specifically, Adenocarcinoma cancer of the junction of the stomach/oesophagus). The shock when she told me was debilitating, I had to lie down as I felt sick, my parents were devastated and my sister was speechless. I had to tell my poor girlfriend the news via text as she was back at University following the incident on my birthday. Nevertheless, it is this core support group who have gotten me through this and helped me in every way imaginable. I was referred to the Royal Marsden in Sutton immediately where I met some lovely consultants and doctors. My mind was instantly put to peace - my consultant is well humoured, my GI Nurse who is my main point of contact is extremely caring, and my surgeon truly world renowned. I was advised that I would be having four sessions of chemotherapy, then surgery, then four more sessions of chemotherapy.
After some preparations (another endoscopy, a laparoscopy, and a procedure to fit a port/device in my chest), I started FLOT Chemotherapy at the Sutton Branch of the Royal Marsden on the 21st November 2017, and was scheduled to have chemo every two Tuesdays (21st November; 5th December, 19th December, 2nd January). A Tuesday would come, I'd go into hospital first thing, do some blood tests to make sure my body could handle the chemo, then once approved, I'd sit in a chair for two hours having one drug dripped into me, then once that was done, I'd sit for another hour and get another drug dripped in. Once that was done, I'd have a pump connected to me which I'd take home - this contained a final chemo drug which would go into my system across a 24 hour period, so I'd go home with it attached, sleep with it attached, etc. The next day, 24 hours after the pump was first connected, I'd drive back to hospital (brutal for me as I suffer from car sickness, let alone when there's chemo involved), get the pump detached, then head home. I'd then wait for the next chemo session 13 days later on the following Tuesday. Chemotherapy was tough, but with the support of family, friends, and Royal Marsden staff, we managed it. Hair began falling out after around three weeks, after Cycle 2 of 4, which was psychologically difficult to witness, but a small price to pay. My main symptoms was just the feeling of sickness, but I was only physically sick once (ironically, moments after I found out I had been offered a dream job). The feeling of sickness generally subsided around 5 days after my actual chemotherapy session, allowing me to rest as normal during the following week where I wasn't having treatment. Other side effects include huge sensitivity to the cold (meaning I had to wear gloves, hat and scarves whenever I stepped outside in the cold winter), pins and needles in my hands and feet, and the inability to drink anything cold due to the risk of my throat seizing up and spasming. My doctors actually had to postpone Cycle 4/4 by one week because my blood results showed that my liver enzyme levels had skyrocketed by several hundred percent. The final chemotherapy was therefore not 2nd January as planned, but the 9th January, and surgery was set for 20th February.
I had surgery at the Royal Marsden in Chelsea on 20th February 2018. I didn't know the exact procedure that would take place until I met my surgeon a couple of hours before the procedure, but he recommended that we remove my entire stomach and connect my small intestine with my oesophagus ('total gastrectomy' procedure). I was in hospital for around 15 days, and bless my mum, she stayed with me every day after I was taken out of the intensive care unit. I woke up in Intensive Care with what seemed like a life-support number of machine around me. I had a drain in my stomach, some sort of nutrition IV pipe in my neck, a catheter, and a drain through my nose, as well as a cannula in my arm. Intensive care was tough, because I was routinely checked meaning I could barely sleep through the night. For the first two nights, I would wake up with massive bleeding from my stomach drain site, and doctors had to scramble to get me cleaned up, so I'd wake up at 4am and there would be blood everywhere. My blood count dropped every day, so I needed two blood transfusions just over a week after my operation. However, surgery went very well and I had a full pathological response, meaning that I was cancer free after surgery. I had a total gastrectomy where my entire stomach was removed, as well as part of my oesophagus. For those who are unaware, this means that I no longer have a stomach, and my oesophagus is connected to my small intestine, which now acts as a new stomach for me. It is a major life changing operation but, again, a small price to pay for being cancer free. I went from T3N2M0 to T0N0M0. Since then, I have lost a lot of weight - I've always been slim due to a high metabolism but now this is a bit of a curse as I find it hard to put weight back on. Hopefully this changes over time. A big obstacle that I'm still overcoming post-surgery is food getting 'stuck' in what feels like the junction of my oesophagus and stomach. I guess surgery wounds have made my oesophagus tube more narrow, as if I take too big a bite of food, or if I don't chew enough, the food will sit at the bottom of my oesophagus. Unlike the problem before where drinking water would 'push' the food down, water does not help, it makes the problem drastically worse because it simply adds to the volume of 'stuck' food/drink in my food pipe. The only way to unclog the contents is by vomiting, and this usually happens naturally about 10 minutes after I take the bite of food. This can happen multiple times a day, or it can happen only once or twice every couple of weeks - it seems to be improving, but after chemotherapy is finished, I will request a balloon endoscopy procedure to stretch my oesophagus. Realistically, I need this problem fixed if I am to put my weight back on so that I can have the freedom to eat what I want without fear of vomiting it back up. It's also a psychological obstacle because the thought of eating out for dinner is a scary one, as I would feel very uncomfortable eating out and getting food stuck and throwing up in public.
At the time of writing, I have now started my post-surgery FLOT chemotherapy. My first date was 17th April 2018. Hopefully once these four sessions are done, I'll be able to hopefully get on with life. Final chemotherapy session, if I have the strength post-surgery, should be May 29th 2018. [The next steps are written every two weeks, in a way, reviewing how each chemo session went].
This first set of chemotherapy, on 17th April, was extremely tough and quite easily the hardest two weeks of my life. I was constantly vomiting, unable to drink fluid, unable to eat, unable to move out of bed, unable to speak or think clearly. If I was able to sleep at night, I'd wake up in the morning feeling exhausted. I'd struggle to get up and walk to the kitchen to try and eat something, and after a couple of mouthfuls of cereal, I'd instantly start vomiting. Anything I ate or drank would make me vomit. I'd genuinely estimate that I was eating 50-100 calories a day during this period, and maybe drinking 200ml water a day. I'd vomit at least 5-6 times a day. I lost 3.5 kilograms in these two weeks further taking me to serious skinniness. On Tuesday 24th April, a week after my first post-op chemo, I went to my GP for my first Vitamin B12 injection - an injection I will need every three months for the rest of my life. I was dazed, short of breath, unable to finish sentences, unable to sit in the chair without swaying. The GP recommended I go into Croydon University Hospital A&E for IV rehydration, and so I did. Funnily enough, a very generous doctor in A&E recognised me from the night I went into hospital back in October after the blood vomiting on train incident, a whole six months after I first went in on that horrible night. Despite seeing thousands of patients since then, the kind Iraqi gentleman recognised me from that night and put me in a comfortable room away from A&E to get hydrated. I caught him up with my story, and he commended me on my resilience. Since that IV fluid session, I perked up a lot more from the following day (minus a vomiting session after I got home from A&E, bizarrely). I was also prescribed 50mg Cyclizine tablets.
Cycle 2 of 4 took place on Tuesday 1st May. It was the worst experience I've ever had. Within hospital, around 2.5 hours into getting my chemotherapy 'dripped' into me, my blood pressure dropped, I couldn't sit in my seat without being in total discomfort, my head was spinning, I couldn't control my bodily fluid functions (trying to keep this section clean, but put it this way, I needed an adult nappy!) I tried to go to the toilet and I couldn't walk, and I had to struggle with help from nurses and my mum as I tried to stumble to the toilet to be sick/lose bowel control, all while hobbling with the device which pumped the drugs in me. As such, I simply had to stay in the Royal Marsden overnight where they rehydrated me, pumped me with antibiotics and figured out a plan to tackle cycle 3 and 4 over the rest of May. I was lucky that they managed to find me a bed in the Sutton hospital, or else I would have needed to take an ambulance 15 miles across London back to the Royal Marsden in Chelsea. I now have stronger sickness pills - I've usually been on 10ml Domperidone three times a day for five days and two Dexamethasone 2mg tablets twice a day for three days, with an option of an 8mg Ondansetron 'top up' for when I feel sick (plus the 50mg Cyclizine from the first post-surgery chemo), but now I'm taking more medication than ever. Seems to help, but even swallowing a pill makes me feel nauseous and now I have that psychological barrier where just taking medicine reminds me of feeling like crap.
The Royal Marsden kindly offered me a bed for the night for Cycle 3 and 4, so that I could stay overnight after my chemotherapy session and be looked after. I've found the recovery over the last two weeks since Cycle 2 has been a lot more bearable, and I put it down to the new anti sickness drugs and the hydration they gave me in hospital. I still have had incidents of vomiting, but it is light-and-day compared to the first cycle, where I would vomit several times a day from the first moment I woke up to the moment I fell asleep. For cycle 3, the doctors have decided to lower the concentration of my chemotherapy dose, as my BMI has plummeted (I was still on the same concentrated dose of chemotherapy as I was before surgery, despite losing 10-15 kilograms since then and despite being so much weaker than before). One of the FLOT chemo drugs, leucovorin, has always been intravenously given to me over two hours. My consultant is now making this longer, and it will be given over four hours. I have also been given three different tablets to take the day before my chemo, which will hopefully be in my system and help me fight the horrible chemo effects (150mg Ranitidine tablet twice a day for three days starting the day before surgery; two 2mg Dexamethasone tablets twice a day for three days, now starting the day before chemo; and one 10mg Cetirizine tablet once a day for three days starting the day before chemotherapy).
With all these precautions set up, cycle three was more bearable. It was still tough, really tough - but nothing on Cycles 1 and 2. I also think that the pressure of not needing to go home, knowing I was looked after as an in-patient and knowing that I had fluids/nurses available to me, certainly helped. Thankfully, this is all set up for the final round on Tuesday 29th. The only problem I had after cycle 3 (minus the usual sickness) was extreme stomach pains. I find myself eating more now, pushing myself to pile on the calories. However, if I eat too much, or if I have too much sugar, I find myself having the worst pain I've ever had, all centred around my stomach. On Saturday 26th May, three days before my final chemotherapy, I think I had an episode of 'Dumping syndrome' - I had torturous stomach pain (I felt like I'd been stabbed), I was dizzy, nearly lost consciousness, was constantly vomiting, and my temperature fluctuated massively. This lasted for nearly an hour, and reminded me of the pain I was in for Cycle 2 of chemo when I lost all control. I begged my mum to call an ambulance, but thankfully the horror passed soon after. I'm now conscious of eating large amounts of food late at night.
Cycle four was much easier compared to the previous three sessions. I had a huge psychological boost knowing that this was my last ever session. I actually smiled for most of the day through chemotherapy. I made sure I got my cliche photo whilst getting it, and once I was finished, I barely felt the sickness effects.
So, what's next?
I have met my consultant and surgeon since surgery, they are delighted with my progress. They congratulated me on making it through chemotherapy after surgery, and informed me that LESS THAN 50% of patients make it through the four stages of FLOT/ECX chemotherapy after my type of surgery, because the chemo is just too intense - over half of patients tap out and ask chemo to be stopped early/before the fourth cycle. I can 100% sympathise with these patients, but I'm glad to know that I did everything I could to beat this.
The next year presents a physical and psychological battle. Physically, I start a new job in Dublin in October, so I have around 4 months to try build myself up again. My major challenge is to get my stamina and energy back whilst trying to not burn precious calories - I can't aim to go on runs because while that's good for stamina, it will burn calories. Due to eight rounds of chemo, surgery, and having no stomach, I sit at 51kg despite being 6ft tall. My absolute biggest desire is to get my weight back. But how can this be done when you don't have a stomach to store large quantities of food, and when your new system is sensitive to sugar? Most people would recommend high-calorie protein shakes or McDonalds milkshakes, but with the sugar content in most of these items being astronomical, it makes dumping syndrome likely. I can no longer go out to a restaurant and get a three course meal; child portions will probably be the norm for the next while! The weight gain will be tough, maybe even impossible, but I will give it my all. Overall, I look forward to the sunny summer days of being able to (stamina dependent) walk around freely, get on a bike, lift some weights, and then come October, I'll hopefully be able to settle into my new role in Dublin. Psychologically, there will always be that 'what if' in the back of my head. Like all remission patients, I'll need to do CT scans every few months, and every time it'll be terrifying. I'll need to do Vitamin B12 injections every three months for as long as I live. But that's life! It's something that people like us just have to accept and try to stay positive about. It allows me to put some perspective to other troubles, realising that not everything is as bad as it seems. I guess this whole process has changed my output on reality - despite going through hell, I feel lucky to be in this position, to have a second chance to go out and enjoy myself more than ever before, appreciative of the struggles I had to go through to continue living relatively normally (minus the three course meals and oreo milkshakes), and appreciative of the fortune I've had while so many are unfairly terminally ill with this disease.
To my consultant, my surgeon, my specialist GI Nurse and all the countless doctors and nurses who have looked after me; to my family, and my girlfriend. I owe my life to you all. Thank you for being there for me. Thank you to the Macmillan Online Community for providing your insights, I hope to be able to pass the torch on and help those in future need of comfort or support.
Please do let me know if there is anyone out there with any earlier symptoms and I'll be happy to give more insights to my process. I'll do my best to be on here as much as possible to give support too.
Ali :)
