Hi skyward,    It looks like you have a great opportunity to bring your family along with you on your journey.    Encourage your family to express what they are thinking and feeling - let them have a cry, but only if they are hugging you at the time.    Then get get them involved with enjoying whatever time you do have left. Go out for bushwalks or picnics or whatever tickles your fancy. But show them that you are content with whatever fate throws your way, as long as they are there to help you when you need it in the same way that you are there for them.    Even think about developing a stand-up comedy routine and get them laughing with you rather than crying behind your back.    So help them to enjoy life as best you can and celebrate the love which abounds among you all.    Let us us know how it goes.    Best wishes, Rick ... View more

Hi Linzi,   I must confess that I have had to deal with delusions on two occasions. Both were while in hospital following my gastrectomy.   The first occasion was my own delusions in the form of  nightmares - I was a party to mass murders and than I was analysing what had happened and trying to rationalise that they were necessary. I got over this by getting off the opiates.   The second was where an elderly fellow in the bed opposite from me was firmly convinced that he was in a neighbour's house and that someone had changed all of the furniture without permission. And outside the window were people playing poker machines and a large carpark full of cars. The truth was that we were on the 10th floor in The Canberra Hospital. For him, these delusions were causing him reasonable levels of anxiety and stress.   From 1 am through to 6 am, I talked him through each of his concerns and then revisiting them numerous times through the episode. I quite enjoyed the psychological challenge, but was exhausted by the end of it - mostly from lack of sleep. The next evening it started again, but he was transferred to another ward before it got too bad. I was quite relieved that he had been transferred because I doubt that I would have had the strength to go through another night with him.   So I do recognise the difficulties that come with dealing with delusions that are worrying to the patient.   What you probably need most is the occasional respite. Do you have other family members who can come in ant take over from you from time to time? I am not saying that you should abandon him, but just get some time-out every now and then so that you can regroup and prepare yourself to assist him to deal with his "realities". But anyone who does come in to help has to understand the approach you have been taking, right or wrong, and continue along the same line. A different approach may cause even more anxiety for your hubby.   So ask for help. Those who truely love you and/or your hubby should be all too ready to jump in to assist.   Keep strong for yourself as much for you hubby!   Rick ... View more

Hi Linzi,   I have absolutely no experience with this so take my comments with a grain of salt. I hope that my suggestions below don't cause you any further distress...   How is hubby reacting to his delirium? Is he getting confused and thereby it is causing him significant anxiety and worry, or is he somewhat oblivious to it all? That is, are you concerned for his sake or is it you who is having difficulty dealing with his oblique view on reality?   If it is causing him stress, then by all means speak withthe doctors about dosage levels and/or alternative medications.   I have a cousin who recently sufferred a series of strokes. While in hospital, he thought that he was travelling the world doing train spotting and other unusual things. But he was happy in his reality and it wasn't hurting anyone else.   So if it isn't causing him any grief, I suggest that you simply go along with it and avoid any conflict between fact and his new view on "reality"; join in on this new facet of his journey and maybe you might look at your life a bit differently.   Warm regards and with best intentions, Rick ... View more

Hi Eugene,   No worries, happy to help. Keep the questions coming. Knowledge is power.    Warm regards, Rick ... View more

Hi Jo,    I did ask about other treatment options when I was diagnosed. For some reason, immunotherapy was not mentioned let alone offered. I would have thought it more effective for early diagnoses than advanced cases, but that just shows how little I know.    I hope that that it is successful for you and lots of others such that gastrectomies become a thing of the past.    Best wishes, Rick ... View more

Hi Eugene,   You ask about the operation - wow, there is a lot to tell. Well actually, the "lot to tell" is more about he stay in hospital than the operation itself. The highlight during my stay in hospital was talking another patient through an episode of delusions from 1 am through to 6 am on Day 7. Now remember that “everyone is different” and just because this is what I experienced, it could be completely different for you.   Here is the short version; the long version (Communique #8 out of a total of 18) goes for about eight A4 pages…   The operation itself was a bit of a non-event for me - I was out for the duration thanks to the anaesthesia. Apparently, the surgery (ie, adaptation of the Ivor Lewis procedure) took about 4 or so hours. Apparently there were no complications. During the surgery I was fitted with all sorts of extraneous plumbing including a central line to my jugular vein, 2 nasojejunal tubes (not “nasogastric” because I no longer have a stomach), an epidural line, arterial line to my right radial artery, 2 cannulas, abdominal drain and a jejunal feeding tube.   I was in intensive care for the remainder through to the evening of day 2. During that time and even the next few days, I developed a bit of a bad relationship with the opiates that they gave me for pain management – I was having rather nasty dreams where I was witnessing and then rationalising mass murders. So my options were to go without sleep and endure the pain or take the pain medication and have rather disturbing sleep.   The epidural line was to assist with pain management, but I had to be lying flat on my back for it to be working. It was removed on Day 5. “Next time”, I will go without.   The jejunal feeding tube is fitted so that you can get your fill without any disturbance to the work site. They will push you to get as much nutrient in as possible. I started at 30 ml/hr with the plan of getting me to 85 ml/hr asap. I was sufficiently strong willed to negotiate my rate including lowering it during the night so that I might be able to have some restful nightmares.   The important point in regard to the feeding tube is to take control of the cleaning (flushing) of the line for yourself. One nurse in particular was exceptionally efficient, managing to push the 70 ml flush through in about 6.3 micro-seconds. Remember that my feeding rate was set to 30-50 ml/hr This sudden squirt of cold water caused significant pain – my problem not hers. Later, I learned that she could have caused a rupture at the lower anastomosis. No, you need to do it for yourself at whatever speed you can manage – take 5 minutes if that is what it takes to avoid significant pain. And also ask for the water to be warmed to just above room temperature so that you don't end up with cramps from the cool water hitting your warm core.   I started on clear fluids on Day 5 and softs (or semi-solids) on Day 7. The temptation with the food is to “show ‘em what ya can do” – this is a mistake. Take it slow. Eat small amounts, chew it up really well and take your time. Too fast and serious abdominal cramping may help to teach you a lesson, but by that time it is too late. After learning the error of my ways, I tried to pace myself so that I finished breakfast just in time for lunch and finished lunch in time for dinner. Once I could demonstrate that I had my dietary intake under control, the stopped the jejunal feeding, but kept the line in just in case and this required 6 hourly flushing until it was finally removed about 4 weeks after surgery.   I was discharged at 5:30 pm on day 8.   I hope that this is more of a help than a hinderance. Let me know if there is anything in particular that concerns you.   Best wishes, Rick   PS Avoid the patient toilets like the plague. Actually, the plague is probably less of a risk to your health. ... View more

Hi KJ,   Congratulations! It is great to hear some good news stories about the treatment protocols we might have to deal with some day. Was your situation caught early enough that there was no metastesis involved?   My one year anniversary of total gastrectomy was about a month ago. Early days for me still, but I can put it to the back of my mind and carry on with all the other pressures and pleasures that life brings to bear. Yesterday, I dealt with things by going to pat my cows and getting lots of licks from the calves - the benefits of living on a small farm.   Live long and prosper! Rick ... View more

Hi ahappyhayes1199,   It doesn't seem to matter what you do, cancer has bad consequences.   For my gastro-intestinal cancer, I was put on a chemo-surgery-chemo protocol. Surgery found that the first chemo seemed to have successfully killed off "all" of the cancer - note that there is no guarantee on "all". But they had to take out mu entire stomach to find out that there were no live cancer cells to be found. So now I live without my stomach and it is no big deal.   But what if I hadn't had the surgery? I would be constantly worrying whether or not the first round of chemo had been successful. If it hadn't been successful, to what extent is the cancer spreading to other organs and tissues?   Again, for me, it was not such a significant question because we can survive quite happily without a stomach. A few minor considerations to be made regarding consumption of food, but not insurmountable.   So you need to consider what state you would be in with and without the operation. Speak with your surgeon and your oncologist and anyone else who will listen about your concerns. Take there responses away with you, think them through and then go back to get any gaps in understanding answered. For me, it took a 4th year student doctor to successfully explain to me why a partial gastrectomy would leave me worse off than a full gastrectomy.   So just keep asking about the pros and cons of all of the options (including the "do nothing" option) until you are content with whatever decision that you make for yourself.   Warm regards, Rick ... View more

Magic ... View more

Hi Riccardo68,   Welcome to the community - a pity that it isn't under better conditions.   What a bu99er. Is 7 years a long time before a metastasis shows up? I have no idea because I got my first diagnosis at Easter 2017 and had total gastrectomy surgery August 2017. I am hoping that I get to retire (about 5 years?) before I have to deal with any more treatment.   It just goes to show that we all need to be vigalent in following through with check-ups and scans to make sure that we keep on top of those sneeky little blighters. Catch them early before they gang up and make a bigger fight of it than it needs to be.   I don't want to raise any false hope for anyone, but I have a friend who had been in remission from breast cancer and then she got news of lesions all through her lungs. Seems that the diagnosis was actually wrong (I don't know if they got her scans mixed up with someone elses or what whent down). At least with regular screening it was investigated very promtly.   If you want to have a "chat" anytime, just send me a private message.   Best of luck, Rick ... View more