Hi Neil (@Neil62) ,   Oh, so much to be said, sorry if I have already said it elsewhere...   Operation My Surgeon said that I needed a total gastrectomy. I asked him about partial gastrectomy, and so that is what he said that was what he going to do. But then I pointed out to him that he is the specialist and I want what will give me the best outcome. So then he reverted to the full gastrectomy option. This did not fill me with any significant level of confidence in him.   I then asked him why partial gastrectomy was not advised. So then he started to flip back to the partial option again - ARGH!!!   I said that I was not requesting partial - I just wanted to know why that was not as good an option. He then said that some of the cancerous cells were found on the lesser curvature of my stomach and that cancer cells could be hiding nearer the pyloric sphincter. This wasn't convincing for me but in the pressure of the moment I chose not to question further an risk the chance of him flipping options again.   It wasn't until the pre-op consultation that I got any sort of meaningful explanation. A 4th year med student intending to specialise in anaesthesia  explained that if they removed the lower end of my oesophagus and only the upper part of my stomach, then I would have a partial stomach that functions somewhat normally, but there would be no lower oesophageal sphincter to stop food from being pushed back up my oesophagus. I would suffer from acid reflux almost all of the time. My response was "OK, I now fully endorse the total gastrectomy option!".   New Diet From memory, it only took about 9 months before I was eating fairly normal meals. Mind you, they were about half the size of before the op and i was eating it in stages. The main difference is that I now can't tolerate onion unless it has been cooked until it is nearly black. It appears that I might have a similar (but less severe) response to chilli. Nearly seven years later, I eat reasonable-sized meals (250g or so) at a sitting with no real problem.   And now I have a "Seafood-Like" diet - if I see it and like it, then I eat it.   Consequences One other strange effect of not having a stomach is that I never get hungry. These days I have to remind myself to drink and eat.   I do try to remember to chew my food until it is almost liquid before swallowing, but it's not really a big deal if I don't.   Now, overeating is a real problem. All it takes is one or two too many bites and my gut makes severe protests. A very uncomfortable condition for an hour or so. Because of this, I have leant to drink before eating and never the other way around. The fluid will pass down far more quickly than food and so there is less chance of it all "backing up". I try to separate drink from food by at least 30 minutes and don't drink again for another hour and a half or more.   One consequence of not having any stomach is that I need VitB12 injection (1 ml intramuscular) every 3 months - I do it myself at home.   And (saving the worst until last) I do occasionally wake up in the middle of the night having unconsciously regurgitated bile and then having breathed it in (aspiration). Not particularly pleasant at all. A burning sensation from it coming up my oesophagus, a worse burning as it goes down my trachea and then an ever worse burning again as I try to cough it up from my lungs. I can usually get back to sleep after about 90 minutes.   Summary So all in all, life is absolutely fine without a stomach - mostly. I am not a grumpy old man - there are just an awful lot of things that I simply can't stomach anymore.   I'm sure that this will have raised many more questions for you than answers provided. Feel free to throw them at me.   Big hugs and best wishes to you for a successful treatment. Rick ... View more

Hi @Neil62 ,   I had oxaliplatin as part of my gastro-oesophageal cancer treatment, but none of the other three medications. The oxaliplatin was excruciatingly painful during infusion, but settled down fairly quickly once finished. I was lucky that I coped really well with the treatments insofar as I was not afflicted with severe fatigue or nausea or much of anything else.   So plan to have a great time at the gig and pamper yourself with the overnight stay in celebration of your last days that you have your stomach.   Life is great, even without a stomach.   Big hugs, Rick ... View more

Hi @MissTee ,   Sorry to hear about your situation.   If it were me in your situation, I would be hounding my GP to get answers to EVERY question that I have.   The medical profession often appears to be a closed society. Unless you have the right credentials, there is no way in.  Your GP has those credentials and needs to fulfil their responsibility to you in being your advocate in this matter. They have the clout to get information from the specialists and then the knowledge to translate that into something that you can understand. If they can't do this for you, then they aren't doing their job - they are essentially "doing you harm" by leaving you in the dark.   So go to it and let your GP know what you need from them. And don't accept "No" as an answer.   Let us know how it goes.   Big hugs and best wishes to you! Rick ... View more

Hi @helena13 ,   WRONG!!!   We are reading this. You need to care - if not for yourself then for your family and friends. You need to get your sh!t together and deal with this NOW! NOW! NOW!   As you have found already, not knowing what is going on gives you no viable options other than curling up in a corner of your bed and crying yourself to death.   And you obviously care enough about yourself to find this website and tell us your story. So do something about it.   I gather that you do not live in Australia. I have no idea about what medical assistance is available to you.  And it sounds like you don't have a job to earn income to pay medical costs. But you need to do whatever you can so that you can get on with living - PERIOD (pardon the pun)   You have an advantage here in being so young. Your body is probably in the best condition to deal with treatment for whatever is going on. The longer that you wait, the less this will be so. Don't delay.   Looking at this though another lens...   Oh what an opportunity this situation has presented to you! Imagine finding out what is going on with your body, you get it fixed and then you go on to be a motivational speaker who educates others (Young and older) about how they can take control of their situation and overcome adversity. Think of the many other lives that you could save!   It is all up to you. Nobody else has the power that you have to make things happen. Carpe diem (seize the day) and help to make this world a better place.   Hugs of strength to you, Rick ... View more

Hi @catherine144 ,    I too am well down the path following treatment. My main PN symptoms are tingling in the fingers, intolerance to cold on my hands and a burning itch all over my feet at night.  I am fairly successful at ignoring the tingling fingers, wearing gloves in the cold mostly works, but the feet is a big problem. My feet used to wake me up in the middle of the night and I would go for walks in an attempt to get them settled down. This rarely worked an so I went looking for other approaches.    I now wear thick socks to beg each night. I find that this stops my feet from getting stimulated from rubbing against the bed sheets. But there are still nights when I have to restrain myself from scratching my feet because once I start there is no end to it. A matter of mind over mind - aka won’t-power. “I must not scratch, I must not scratch, I must not scratch…” until I eventually fall asleep. The other important factor to avoid the burning itch in my feet is to avoid walking anywhere without firm-soled shoes. I sometimes forget and chase off unwanted wildlife in the garden with only socks on. Big mistake. Stones poke into the bottom of my feet and I regret it for the next hour or so.   Good luck with finding a solution that works for you.  Big hugs to all, Rick ... View more

Hi @Ness1983,   Welcome to the CCOC! This is a wonderful site to ask questions and get a load off your shoulders.  As far as your question about what to do, I say “carpe diem” (seize the day). That is, try to pull your mood and thoughts up above the devastation that this condition is imposing on you.  Choose to be strong and even invincible - as much for your children as for yourself. For guidance, do a web search for the FISH! Philosophy. However, do allow yourself some time to let your emotions out. But do this as an exorcism rather than pitying yourself. Let it out under your control and then get back in the saddle and get on with being the immortal that you can be.  Treatments are getting more effective every day, so the chances are improving that you will survive a lot longer than otherwise expected. It is much better to face this extra time standing strong than huddled in a ball in the corner of your bedroom.  If anything in your treatment causes you significant concern, speak up and be heard.It  Remember that it is your life and your body. Don’t be a passenger in your journey - be a co-driver and be accountable to yourself as much as you demand that the medical staff be accountable to you.  The consequences of giving up are far more reaching than you might think.  Best wishes for your treatment.Big hugs and keep us posted on your progress.  Rick ... View more

Hi @Stef89 ,  A scan can be very unnerving because of the problems that it might uncover. The resulting news could be reassuring or devastating.  However, knowledge is power. If there is something nasty going on, it is still going on whether or not you have the scan. Isn’t it better to know what (if anything) is happening and getting on to deal with it than to keep worrying about what might be festering away inside and even the chance of it getting worse? So a scan should be seen as an opportunity to reassure yourself that all that can be done IS being done to help keep you as healthy as possible.  Hazzar to scans! Hugs to you all, Rick ... View more

Hi @LottiePKemp ,   Welcome to this wonderful support site.    I hope that I am comprehending your question correctly - my apologies if not…   There are many varieties of orally administered cytotoxins (chemotherapy treatments). People with the same type of cancer often receive different cytotoxins. And people on the same treatment regime experience different side effects and different efficacy.  I received my chemotherapy treatment both orally (daily) and by infusion (drip via cannula into my arm - once every 3 weeks). I never got tested to see if I could receive oral treatment - it was just assumed to be appropriate.   So if you provide more details about your situation, we may be better placed to provide a more detailed and specific response to your question.  Best wishes, Rick ... View more

Hi @Janegio62 , It begs the question as to why he won’t eat while he is back with his family around him. Going without appropriate nutrition for more than a day or two is pretty serious for most people. I would call his doctor as a matter of urgency to discuss the situation and work out what is best for your Dad.  Best wishes and big hugs, Rick ... View more

If you speak with enough conviction and authority, people will believe (almost) anything.  WARNING: Don’t read this if you are looking for positive and heartwarming thoughts…   Of course they are winging it. They don’t know why some people get cancer and others don’t; why cancer sometimes spreads and sometimes doesn’t; why some cancers in some people respond to some cytotoxins while not for others with the same cancer.  I wish that I had a dollar for each time a medical professional has told me “everyone is different “. What a cop-out! If they REALLY knew what they were doing they would get it right the first time.  And don’t get me started on surgeons. To them, everything can be fixed with a knife - including the extensioins  to their 3rd holiday home.  My surgeon doesn’t even bother to read up on my case notes before seeing me - I have to remind him about what procedure he performed on me.  Please take all of my words here with a grain of salt. I’m sure that they all do the best that they can with the resources (time and information) available to them.  Rant over - hugs to you all.  Rick ... View more