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It is with a broken heart that I report that my beloved husband, Tom, passed away on June 22 from this horrendous disease. He was a 30 year retired Marine and if anyone had the strength to beat this enemy, it was he. It was almost to the year that he was diagnosed. He fought a brave battle and gave it his all; however this brave warrior couldn’t win in the end. He passed with dignity and honor. His memory will be forever present for his courage.
Hi Lainy, thanks for the advice regarding the B12 shot. My husband will definitely ask about that tomorrow when he speaks to either the doctor or the PA. At this point, anything to give him even a little boost would be welcome and lift his spirits.
Red
Hi Mary, thank you for your response and relating how fatigue has been an issue for you after treatment. You definitely hit the nail on the head regarding wanting to return to normalcy quickly. Despite the fact my husband was told that it would be a slow process, I think he felt that just maybe that didn’t apply to him. Like you, he was full of energy and he was also In great physical shape. I honestly think that this slow return to his past condition has been very depressing for him. However, the most baffling thing is his loss of appetite and queasy feeling at times. For that issue, he will call the oncologist tomorrow and see if he can get in this week to see what is going on.
I don’t have to tell you that this dang disease really gives you a run for your money!! Just when you think you have passed one great marker, another challenge arises. It’s so darn hard to keep on top of things when they change every day. As a caregiver, it is so unnerving not to be able to manage my husband’s care. For me, at least, it is very scary insofar as I don’t want to do the wrong thing or miss a sign I should have see.
Red
I have just read an article that seems to find that anemia at times causes hearing loss. Since my husband’s red blood cell count is somewhat down, I now wonder if that in addition to the cisplatin has caused his hearing problem. I suppose we’ll never know but it’s an interesting theory that the two of them are a team! The sad thing is that the loss is not reversible. So in addition to putting up with the nasty effects of the chemo and the neulasta injection, he has this bloody consequence to deal with. You just never know what’s ahead; there are always surprises. Let’s just hope the good ones win over the not so good ones! Hubby has his full body scans on January 10 and we’re praying for excellent results. A lot is riding on this one!!
Happy New Year to everyone and wishes go out for good health and happiness in 2017.
Red
Dear Joe and Debbie,
Prayers and well wishes coming your way. Together you will make a wonderful team that sees every day as special and every day one to give thanks for.
Fondly,
RedBilly and Katherine,
Welcome to this site and I second the good wishes that everyone has sent to you. I also agree that the sooner, the better in having the resection. My husband was lucky enough to be eligible for the surgery last August and it is quite a good feeling “to have the beast out!”
I also want to voice my understanding of your role as a caregiver. I know first hand what a challenging role it is. This is not a position any of us ever imagined we would be in and it is thrust upon us with no notice whatsoever.
My thoughts and prayers will always be coming your way.
RedHi Joe,
So very sorry to hear the news about your Mother, Debbie. My gosh, this darn disease just shocks the heck out of you, doesn’t it? When it “hit” my husband last July, it was the surprise of a lifetime. Amazing how you go along living your life and all of a sudden the earth is knocked out from under you. My thoughts are with both you and your Mother. I hope that you find a lot of helpful and comforting information on this website. They are many of us here, both patients and caregivers, who support each other and provide a band of love that is full of understanding and strength.
Prayers coming your way
RedHi Bob,
Fatigue for my husband, at least, means he doesn’t have the same energy or stamina as he used to have. He’s always been very active and that same sort of “steam” just doesn’t seem to be there as it once was. It is interesting to note, though, that after his first chemo treatment that he was really “wired” and full of zip for two days following it. We were told it was because they gave him a steroid in his drip. He sort of “came down” after that first two days. However, after the second round of chemo, he didn’t have the same reaction. This has been his week off of chemo and he goes back on Wednesday. This week off has been interesting insofar as he’s gained energy as the week progressed but he still gets tired easily and definitely goes to bed early. He’s never been one to take naps and still refuses to do so. I think I’ve read that others find taking a nap helps, but you couldn’t convince this former 30 Year retired Marine of that!!
I’ll be thinking of you on Thursday and wish you luck. By the way, my husband’s chemo treatment at MD Anderson has a remarkable facility for patients and partners alike. Each patient has a private booth with a TV screen on which to watch movies or TV, there’s a library of books to read and even a very pleasant patio on which to sit. At lunch time we are served a gourmet meal from a cart that passes by! Quite the resort!!!
Regards,
RedHi Bob,
Boy, do I identify with you when you say your life tipped over like an apple cart when you found out you had cc. The very same goes for my husband. He was diagnosed in early July of this year and had a resection of the main bile duct in early August. The thought never, ever entered either of our minds that his five day stomach ache would turn into such a nightmare. The good news is that he could have the resection and for that we are thankful. But boy oh boy, were we ever taken by surprise and life as we knew it has really changed.
It sounds like you are in good hands at UNC Chapel Hill and that you have a plan in place. It’s so important to feel confident in your team and you seem to voice that.
My husband has had once cycle of Gemcitabine and Cisplatin and will begin his second cycle this Wednesday. It’s so fortunate that he has had few side effects from it other than fatigue. His appetite is really good and there has been no nausea either. However, we have been told that as the cycles progress that the other side effects may surface or the fatigue worsen. We take it one day at a time, or at least we try to do that. I tend to be over protective and he tends to act like there’s nothing wrong! I suspect this is common behavior among couples!
We send our prayers out to you and your family. I feel confident that you will do well with your chemo treatment. Just remember that you are not alone in this struggle for we all are here to vent or inquire or learn. Be positive and feel us rooting for you! Keep us posted, will you?
Red
Yahoo………………Just read it’s over!!!! Fingers are crossed (and all sorts of other things) for good news on the results.
Red
Julie,
You don’t me, but you are such a strong woman as I can detect from your postings. My heart goes out to you for good news today and the days to come.
Red
Hi Debbie,
What a nice welcome message! I am so happy to be connected here with everyone and I immediately felt right at home. It is a marvelous feeling of freedom to be able voice so many things that one deals with as a caregiver as well as with a patient.
It was nice to hear that you were in a similar boat as I am right now. Like many men, my husband is not much into “talking things out”, especially when it involves anything emotional. (Right now everything seems emotional to me!) Hubby calls me his “administrative assistant” and like your husband did, leaves all the gathering of information up to me. Actually, I think he’d be fine if I didn’t do any research at this point in time because now he has complete confidence in his Oncologist. However, I can’t stop!!! I am trying my hardest to be resigned to the fact that there is nothing I can do other than provide support and reassurance for him when he hits a rough patch. Sometimes I think that if I had children like you do that they would be a great asset in helping us both deal with what we’ve been dealt. On the other hand, I can see that it would be added pressure, so I guess you just never know, right? One just has to live with the present circumstances and be thankful for what blessings we have been showered with. For instance, Hubby is so fortunate that he could have a resection. I had no idea at the time how few patients can. In addition, his tolerance of his first cycle of chemo has been really remarkable with no side effects other than fatigue.
Thanks for your input and I feel better knowing that I’m not the only “worry wart” spouse out there. Poor Hubby, because he gets way too much mothering and smothering; a 30 year retired Marine finds that hard to swallow!
Much gratitude to your for your support,
RedOh my goodness!!!! I can not believe the pain and suffering both you and your wife have been put through. Your story is just incredible and I can’t fathom how awful the last three months have been for you. However, you certainly are in the right place here to get help and recommendations from those who have been through similar experiences. What a shame that the Canadian system has so mistreated your poor wife. Unfortunately, I have no advice but I second Lainy’s suggestion that you get your wife to a hospital in Toronto as soon as possible. The best way to get a handle on this nasty and ugly carcinoma is to nip it in the bud, so to speak. Therefore, the sooner that she can be properly diagnosed and a plan devised for treatment, the better. I firmly believe that time is of the essence and so I will pray that you can get her admitted as quickly as possible. Please keep us all posted on what happens and know that we are thinking of your both.
Kind thoughts coming your way,
RedJojo, What a disappointment to have your appointment canceled. I can sense the frustration in your message and I totally sympathize with your situation. It’s so difficult to “do the dance” that doctors and institutions demand, especially when so much hinges on it. Marions and Lainy know far more than I do about blood levels, etc. than I do. However, I do know quite a bit about MD Anderson in Gilbert, AZ. My Hubby is being treated there with chemo and is being seen by a very dedicated Oncologist, Dr. Kundranda. There aren’t enough wonderful words to say about both Dr. Kundranda and the facility itself. All I can advise is that you shouldn’t give up and should you finally get an appointment there, you won’t be disappointed in the care and expertise of the staff. I have no idea to whom you should speak there, but I sure hope that you don’t give up.
Warm thoughts coming your way,
Red
