jmoneypenny
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Hi Ron,
Just had to say – sorry the football team wuz robbed! I was in Edinburgh a few years ago at the same time as a big match, and I know how proud you are of your football teams in Scotland. You’ll just have to whip them again next time.As for your comparison of health care systems, that’s been discussed a lot in the States lately, with ignorant politicians pulling statistics out of their butts to make it seem like Europe has a worse health care system (they want to find a reason to deny univeral coverage). Many wonderful commentators and journalists have come forward to point out that Europe, and the UK specifically, have a much better system in many ways: the infant mortality rate in the US is one of the highest in the developed world, for instance. I think there are pros and cons to both systems, but money gets you a lot more here, so if you’re poor and you don’t know how to work the system, you’re in big trouble. So no offense was taken by ME, anyway, due to your comments.
I’m very glad you’ve received such good care and I hope you continue to fight the battle and keep your Scots humor!
JoyceThank you, Stacie, for bringing up the subject – I had wanted to, but didn’t know how without sounding whiney and self-pitying.
As soon as I walked into a store and saw the Christmas displays already up (right after Halloween), I walked right out and felt depressed for hours. Now I hear references to the holidays everywhere I go, I hear Xmas carols, hear people talking about their plans with their families, and I”m just paralyzed with grief. I would really love to just stay home and be miserable instead of going to my husband’s family for Thanksgiving, but I know they’ll think I’m selfish and I should put on a good show for my daughter. So I’ll go and I will be miserable but I’ll put on a good face. I’m so tired of putting on a good face.
Last Thanksgiving, my mother was failing fast, but she forced herself to make the turkey and the rest of us did everything else – she was very proud of herself. She even managed to go Xmas shopping the next day and get it all done in one store, though she totally exhausted herself. This is what I think about and I can’t help it. Maybe withdrawing from the world is not healthy, but it’s all I want to do. Nothing will make it better – unless she comes back to me. I guess I’m still in denial, huh?
Joyce
Good luck to you and let us know how the doctor visit goes. Sounds like you have a good relationship with a doctor you can trust, which is so important. And your husband sounds like he has a great attitude!!
-JoyceHi Jeff,
I hope you can enjoy your Thanksgiving and keep up your famous positive outlook! They keep throwing you curveballs and so far you’ve managed to catch them all ( not a baseball fan, so does that analogy work?)
Best of luck to you and Happy Thanksgiving! And thanks for the poem – it means a lot to me, as I’m already in depression over the first holidays without my mother.
Joyce
Dear Mike,
You sound like you’re really on top of things – the diet and supplements may be just the right thing to help combat this thing. And your son’s age is defnitely in his favor – I wish you and your family all the best – let us know how everything goes. What a horrible thing to have to go through at any age, but it’s very uncommon for it to happen to someone so young. There’s another member here, Alan’s Mom, who had a 24 year old son die of cc – she’s in the UK.Lots of luck and love going your way,
JoyceDear UK wife,
It sounds like your husband has been having a very good quality of life since being diagnosed, and that is wonderful. Please don’t have worries that you didn’t try chemotherapy earlier, and don’t feel guilty, as your decision allowed your husband to have a pretty normal existence, it seems. It’s an individual choice and there are no right or wrong answers. I always have to say that to people because I know that there are some people who have benefited tremendously from chemo — in my mother’s case, chemo was a bad idea and I wish we had never tried it. But everyone is different, and we’re all groping for answers in the dark.As for your husband having no symptoms, that sounds like my mother’s experience. Please don’t let the fact that she died influence you – this disease progresses differently in everyone. My mother had intrahepatic tumors on both lobes and I guess it didn’t interfere with her liver function until near the end – never needed stents or anything. Her only symptoms were fatigue, dull pain in the abdomen and abdominal swelling – when these started to get worse and she was nauseous all the time, she tried chemo and it really weakened her immune system, which was not too good to begin with. She was allergic to many drugs and had autoimmune disease, so that is partly responsible for her not tolerating chemo well. I think the chemo actually hastened her death, so it’s a really tough call – some people would have their lives extended by chemo.
I would take into account your husband’s strength right now and his tolerance for drugs – we all want the best quality of life for our loved ones, and it’s so hard to know what will make that quality better. As I told my mother, you can always try chemo and see how bad the side effects are, and then quit if you think it’s too much. You can just give it a trial run if that’s what you want, and make sure you get anti-nausea prescriptions and pain meds for side effects and the natural symptoms of the disease.
I wish I could give you better and more well-informed advice – I’m so glad that your husband isn’t in that much discomfort, but I know you’re just waiting for the other shoe to drop and it makes you feel so helpless. Please know that whatever you decide to do is the right thing and your love and support is more important than any medical intervention.
I wish you all the best and hope your husband stays healthy-
JoyceDear Rose,
You are being so wonderful to your mother – I’m sure she appreciates it. Best of luck with breaking the news to her – I don’t have any advice or practical information, but we’re all here for you for support.
-JoyceOh, I’m so sorry to hear your bad news!! Yes, go home where you can be surrounded by loving family and friends – do whatever will give you some peace and comfort- you deserve it!
I know you’re upset, and understandably so, but don’t give up hope – you don’t know for sure what the problem is, you’re young and strong and the odds are in your favor –you may even have those children yet! All my hope and love is going your way. It’s good you have a loving husband and family to support you in this scary time – let them take care of you for a while.
Best wishes,
JoycePS – As far as the bile ducts, I don’t know which ones you had removed, but there are bile ducts located outside the liver and also inside the liver, so you may want to ask which type of duct is affected.
UKmember,
That is so beautiful – it made me cry, too. I wrote something similar for my mother’s wake, but your daughter is truly a gifted writer and did it better. I also ended by saying that there is a void that will never be filled.With the holidays approaching, it all gets so much worse, doesn’t it? Thank you for sharing.
-Joyce
Dear Karen,
So sorry to hear that you have gone through so much – I don’t know how you do it. I hope your mother gets some relief from her pain and nausea – did they suggest suppository anti-nausea drugs? If she’s throwing up, suppositories may help. Just from my own experience it sounds like your mother may be nearing the end – can the hospice nurse give you a clearer picture? Not eating or drinking at all is definitely a danger sign.Best wishes to you – my heart goes out to you and your mother and I wish you both peace-
JoyceThat’s a great website – I wish I had found it when my mother had shortness of breath (dypsnea). The doctors at NYU Hospital kept telling her it was an anxiety attack and couldn’t seem to get it through their thick skulls that it was a symptom of her cc and/or chemo regime – the anemia and the ascites cutting off her breath. Only hospice was smart enough to prescribe morphine, which as an opioid helps breathing in these cases many times.
I advise all caregivers out there to take a look at this site – I’m sure there’s more that can be added, but the parts I looked at were thorough and informative. Very helpful – thanks, Stacie!
-JoyceHi Sharon,
I echo all the wise words that Peter just posted. Chemo is an individual decision – sometimes it helps, sometimes it doesn’t – and when it doesn’t help, you don’t know if it’s because the chemo is too harsh or the cancer is just too aggressive to be helped at that point. As Peter said, it’s always okay to stop chemo if you think it’s just too destructive and giving too many side effects. In my mother’s case, she didn’t do chemo until she started to feel nauseous and ill every day and we thought chemo might help. THe first round knocked her out but then she felt reall good for about a week or two. The second chemo was just too much for her, messed with her immune system too much. Things to consider: does your mother have a pretty good immune system (not too many allergies and side effects to other drugs)? She sounds pretty strong so she probably can take it, but you never know until you try. Also, is her dosage too high and could it be lowered if necessary?(with Xeloda the dosage is often adjusted) Of course you want quality of life, so you have to just GUESS how much the illness if from chemo and how much from the cc. It’s very frustrating, but please don’t think you ever made the wrong choice – there is no wrong choice, because there are no clear-cut answers.As for a timeline, there is no answer there either! Chemo can extend life but sometimes this cancer just doesn’t quit and it progresses rapidly. My mother had two months of life after diagnosis, she was only 64. But many others extend their lives for a year or two or even more. Look for fluid build-up in the abdomen(ascites) or legs, jaundice, uncontrollable nausea (get good prescription anti-nausea drugs, more than one type) – but even these symptoms can sometimes just be glitches in the road and not real signs of the end.
I feel for you, being so far away and trying to figure out how to do the best for your mother from a distance. As long as you give her your support and sympathy, which is the most important thing, you’re doing the right thing.
Let us know how your mother progresses – best of luck to you!
-JoyceHi – I know exactly what you mean about a dr’s prognosis – my stepfather was given 1 year to live (lung cancer) 21 years ago. He died 5 years ago – so that’s a pretty good remission! He was only sick the last year of his life, so you never do know with any type of cancer. But your father’s 2 liver transplants – that’s awesome! Good for him! Is he your uncle’s brother? If so, that shows what good genes they both have. I hope you have them too!
-JoyceDear Eric,
So sorry to hear your uncle isn’t faring well – his story is so important because he has managed to keep the illness at bay for 18 months – quite an accomplishment and inspirational to others. Thank you for sharing and I wish the very best for you, your uncle and your family in this trying time.
-Joyce
