5 years post diagnosis… but bad news…
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Mary,
I feel so badly for you and Tom and know exactly what you are feeling and going through. I’ve been there, the only difference being that it all went so quickly we didn’t have time to think about what was happening. For Jim it was less than 2 months from start to finish. For me it was hard to accept because it went so quickly, but thinking back I can now say I am glad in a way that he didn’t have to suffer very long. We too seemed to go from one problem to another. In and out of the hospital. The last time he was home they wanted us to have some time out of the hospital together, but he ended up back there, too. I think he also felt it was all too hard on me. I really didn’t mind. I just was doing what I had to do for him. We were together 45 years. Married 41. Also did everything together 24/7. It will be 3 years the beginning of September since Jim passed on and yes, I still miss him. It still hurts and I have a big hole in my heart and life that no one can fill, but I am doing OK. Some days are better than others, but I have realized that we are much stronger than we think. I’m not going to say it is easy, but you will get through this and you will be OK. Just be there for him and yes, keeping Tom comfortable and as free of pain as possible is the most important thing.
Know that I am thinking of you both and hoping for the best for both of you as you deal with all of this.
Love & Hugs,
DarlaDearest Mary,
Holding space for you and Tom. Don’t really know what else to say….I so know your pain. Keep Tom as comfortable as possible and know we are here for you.
In peace,
KarenMary, I am feeling for you and it makes me very sad as you are saying things I felt with Teddy. It is good that you and Tom are talking about everything, it really is the best thing to do. My most important mission was to assure Teddy that I am strong and will be OK. I told him I will miss him so very much but I will be strong and I guess I convinced myself as it could have been a lot worse. Like you, it just killed me to see him suffer so, if I could, I would have plied him with his Morphine. Most never suffer like this but remember Hospice didn’t give him the meds. You will survive, Mary. It’s hard but you will do it. I can honestly say today that I am not lonely. My family and friends have been great. I am NOT lonely but there is a big hole in my heart. And yes there are times I get teary. I just keep telling myself how lucky I was to have Teddy for 17 years which is more than most people have in a lifetime. Try to find something like that and when you feel depressed just keep telling yourself how lucky you are. My heart goes out to you and even though you don’t see me, I am with you all the way! Sending you a big hug! {}
Well, it’s Thurs. and we are back at the hospital waiting for Tom to be admitted. It’s wonderful that they have a computer in the admitting waiting room! Anyway chemo was always out of the question and continues to be. We believe Nexium has something to do with his discomfort- he feels better since he quit taking it but the Dr. is having a stent put in his duodenum and in his vena cava. He feels the tumor(swollen duodenum) is putting pressure on it, decreasing the blood flow, which in turn is causing the fluid buildup. I guess this is a common situation. His labs actually look better than they did when he was discharged last week, including his kidney function and liver function. Lainey I understand where you’re coming from but honestly these Drs. have been great. Tom already had a scheduled appt. for today so it was our choice to wait til now. They would have seen him sooner if needed. The Drs. just want him to enjoy what time he has left and not spend it in the hospital. That’s great unless he feels so miserable that he prefers being in the hospital. I think he worries about being a burden on me. I honestly haven’t minded him being in here since it’s been so hot. We don’t have AC so I spent my afternoons hanging out with him in his nice private room staying cool. It’s really not so bad.. Hopefully, both procedures will help. I guess he will be completely stented then. His drain has quit leaking as much and I think if they can relieve the bloating he won’t have as much pain in that area. THe craziest part of all is how quickly all of this is happening. We’re just going from one problem to the next. I feel so bad for him it really breaks my heart. He’s very depressed, which I understand because I am too. It’s hard to stay strong as many of you know. We had the “death talk” yesterday. Luckily I had a lot of outside work to do so he didn’t see how hard it was on me. I couldn’t quit crying and the worst is yet to come! He’s my husband, my best friend and business partner. We’ve done everything together for 32 years and I can’t imagine not having him with me. Like I told him, others obviously survive all of this grief but it’s hard to imagine how. I appreciate all of your support. I’ve been experiencing other’s grief from afar for 5 years and always hoped it wouldn’t happen for a long, long time. Hopefully we will still have some more time but I don’t want him to suffer. I’d rather see him go quickly than to have that happen. Thanks for all of your concern and help. I’ll keep in touch. Just keep your fingers crossed that they will be able to place the stents and they help! Take care, Mary
Mary,
So sorry to hear what you and Tom are going through right now. I sure hope that are able to get some answers and help from Tom’s doctor here. Thinking of you both and sending you tons of positive thoughts.
Hugs,
Gavin
Mary, I am so sorry to hear of what you and Tom are going through. I can not add to the suggestions but I just wanted to let you know I am thinking of you two a lot and praying Tom is feeling better soon. Hang in there girl. Hugs. Nancy
Hi Mary –
I complained of a swelling in my belly to my surgeon (who by the way, said I just needed to build up muscle tone in my abdomen and should try doing sit-ups!) for several months before he finally turned me over to an interventional radiologist. By that time I could barely bend over and tie my shoes – it felt like a basketball was in my gut. The radiologist drained off some of the fluid. In the meantime he also put me on lasix which helped with the ascites within several days.
I don’t know if my situation is close to Tom’s but I hope it helps.
Betsy
xxxxoooAs a nurse I really think Lainy and Marion has a point here… Symtoms of a liver put under too much pressure. He should be in hospital in my opinion. Esopheagal varices is not a joke. Chemo in this situation sounds like a bad idea!! How are his ASAT/ALAT?
Hoping everything will turn out ok!
MariaMary….My husband also developed esophageal varices due to the spread of the cancer and, similar to Tom it did not show up on the scans. The accompanying ascitis leads me to believe that Tom’s liver is in distress. Mary, I would call his treating physician (not the on call doc) and discuss with him as to how to proceed from here. He may suggest to have Tom re-admitted to the hospital in order to deal with the fluid build-up.
I am thinking of you and am sending tons of hugs your way,
MarionMary, I am sorry to say this but at this point I would take Tom, however you can do it and see totally new doctors. When the hospital and the doctors stop listening to the patient it is time for a new game plan. Honestly I was ready to tell you to call Hospice in, until I realized the CC is stable and not too bad. If that is the case the problem I believe lies with who is treating Tom. If Tom is feeling that poorly how in the world can he take Chemo???? Even the Chemo Nurse would not do the Chemo. It’s time for some rock solid answers and some treatment that is going to get Tom strong enough for Chemo. Wishing you the best and I don’t believe Tom has that yet.
Hi friends,
A lot has happened since my last posting. They changed his drainage tubing the day that I posted. Unfortunately it started leaking the next day, worse than before. They brought him in for a cat scan on Fri (the 16th) to see what was happening. Nothing was found but Tom felt so weak and miserable that they ended up admitting him. That night he vomitted up blood. His hemoglobin was so low they gave him 4 units of blood the next day then scoped his stomach on Sun and found that he had 3 esophageal varices( like vericose veins) and one was leaking blood. This can be extremely dangerous if they would give way, like an aneuyrism. On Tues they banded the varices (with rubber bands) and kept him until Thurs night when our Doc wanted him discharged to start chemo on Fri. Everyone basically said that was crazy and when we showed up for his chemo appointment the nurse sent him back to the hospital to be readmitted. He was feeling terrible and his blood count was still very low. Anyway they felt he was stable on Sat and sent him home and yesterday he started swelling up like a balloon. His belly was swollen when I picked him up Sat but now his legs and ankles are twice their normal size and he is belching like crazy! I called the on call doc on Sun and they didn’t seem too concerned so today I told Tom to call and tell them how bad he feels and belch on the phone the whole time he’s talking to them. He’s on a huge dose of Nexium and I can’t imagine why he would have so much gas! I do worry about it damaging his liver or kidneys! Anyway every time he has a complaint now they blame it on the cancer, even his fatigue which ended up being internal bleeding. It’s very frustrating. I don’t think the cancer has progressed to the point of causing all of these issues. It’s barely even visible on the scans. We have an appointment on Thurs with the medical oncologist to see if he can start chemo. If it was me I would probably throw all of the meds out and refuse chemo but he wants to try. Hopefully it will help but I doubt that he will be able to get started because of all of these other issues. Oh and his drain did not leak the entire time he was in the hospital and now it’s leaking again! Go figure! I feel terrible for him. I wish there was something I could do but I’m getting really burned out. I guess we all just do our best. Thanks for listening and I’ll stay in touch. If anyone has any experience with swelling like this, ecspecially related to meds please let me know. Take care, MaryTry not to use too much energy with worrying Mary- the truth is, reality is never what you expect even when you have read other people’s stories time and time again- they are exactly that, other people’s stories.
You will have the strength- I know this only too well. You and Tom won’t get the strength until the very moment you need it.
I am not able to pray yet but I am willing you both on.Mary…..Please, talk to Betsy. Seems as if her drain problems took forever to resolve. There is still the hope that Tom will feel much better once his bile can flow again. I am crossing my fingers for this to happen quickly.
A tidal wave of love is coming your way,
MarionDearest Mary, I wish there was some magical wand I could wave and all would go back to normal. I am sending lots of prayers and hugs and I hope it starts to turn around for you both. Please try to garner your strength. I know the drains are a pain but let’s hope better days are ahead!
Dear Mary,
Those drains can be such a pain in the behind. It took a couple of tries before mine starting flowing without problems. I’m so hopeful the doctors get this issue resolved quickly. I think he will feel much better once he is draining properly. Tom has always had an internal drain, right? Does he have an external drain now? I do know of a way to try to get the drain flowing again. I can email it to you if you like.Betsy
xxxoo
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