September 3, 2008 at 2:08 am #21338tiapattyMember
Well, Frogspawn, I have been on this board for a while and I thought I had seen and heard it all but after reading your story I see that the limits of cruelty of this disease are unknowable.
My mother used to tell a story about the people in the village complaining to the priest about their troubles so the priest suggests they all meet in the village square to trade troubles but after hearing everyone else’s troubles they all decide to go back home with their own. I think of this story all the time when I read the many sad tales here, though we lost my mother at 66 I feel lucky we had eight months with her since I know some don’t even get eight weeks.
PattySeptember 3, 2008 at 12:25 am #21337jeffgMember
Frogspawn… Sorry for your losses. I would also like to thank you for adding your valuable perspective on the subject matter of should I or should I not. I kind feel like I’ve tried both after 9 1/2 years, an dstill trying to figure out which way to go ,as so many option and interventions do exsist. A real good friend of mine just passed away from cancer in England last week. Her Cancer was so far advanced that she lived only four days in the hospital. It goes to show you how long someone can go on living by not knowing or having a positive mind ,maybe an equal of not knowing they even have cancer.
Jeff G.September 2, 2008 at 6:28 pm #21336marionsModerator
Dear Frogspawn…I am so sad to hear of your losses.
Although, on both sides of the spectrum, your Brother and your Dad chose to proceed with and without treatment respectively, they had made their decision based on their personal reasoning and therefore are, in my opinion, highly admirable people. At times, we have a tendency to forget to honor those decisions of our loved ones when dealing with their illness.
I agree with you in re: to the invasive invention in order to detect the true progression of the disease. Also, I would like to add that imaging such as MRI and CT cannot detect any nodule less then 1 cm in size as imaging plates are in the thickness ofSeptember 2, 2008 at 2:09 pm #21335frogspawnMember
From reading the literature it seems that it is very difficult for the surgeons to know how far progressed things are without doing some kind of invasive intervention….and as you say surgery is the only option for a cure.
One thing i forgot to mention about my brothers surgery was that it impacted how quickly he was able to re-commence chemotherapy…he had to wait at least a couple of months after th4e attempted surgery before he could start again… at the time my brother (a qualified Pharmacist so not a lay person in any respect) reckoned that it would have a negative impact on his survival time.
I don’t know whether you have experienced this with Chemo…but he seemed to suffer terribly from post operative infection…and when he was allowed to recommence Chemo that only seemed to get worse beacause of the “Carpet Bomb” effect on his immune system. I’m glad you are having a better experience!
I suppose, at the end of the day, my Dad and brother had two different perspectives. One decided not to opt for surgery, the other threw everything at it.
I should say that my 2nd hand experience and perspective is coloured by the state funded UK NHS system… Make of that what you will!!! This website is fantastic…so many shared experiences… i wish i had seen something like this a year ago!September 2, 2008 at 1:35 pm #21334lisaParticipant
All the literature says that for now, surgery is the only cure for cc.
Many, if not most of us on this board have not been able to have surgery, or have had unsuccessful attempts at resection.
However, some of us have had a good response to chemo/radiation therapy.
This type of cancer really attacks people in different ways. Some people succumb within months of diagnosis, while others of us last years. You just don’t know. I am one of the fortunate ones. My Gemzar/Xeloda regimen has been successful at shrinking the tumor and preventing metanasties. We will continue with this until it is no longer effective, then try something new.
I hope and pray that I, and the others with this terrible disease, can hang in there until a cure or more effective treatments can conquer this disease.September 2, 2008 at 1:19 pm #1423frogspawnMember
It is good to see so many positive people on this website. Good attitude has got to be half the battle hasn’t it?
My father and brother both died of Cc (Dad 4 years ago, brother a year ago) both with cancer in the biliary tree.
Having seen some of your comments about treatment i think CC presents some really difficult choices about what to do for the best. The main point of my note is the choice of whether to have invasive surgery or not.
My father (69) decided not to have any surgery having been persuaded by doctors that it wasn’t worth it… their argument being that because of the location of the cancer, trying to do a resection or transplant is not often possible or even successful. As my father had already had two colon resections (one in each of the previous decades) i can understand that he was fed up with the whole idea of more surgery…and he decided to call it a day. He lasted 18months to 2 years after that having had a couple of stents put in during that time to aleviate the jaundice, itching etc etc.
Can’t say i blame him too much for this…after all he had to put up with more than most in his lifetime…though i am kind of sad that he never got to see my three children and to be honset i did harbour a little bitterness with the decision he made at the time.
My brother told me about his CC on the day of my fathers funeral (he had CC in exactly the same place) though he was aged 49 at the time. He decided to opt for surgery (which was a bit of a punt) given that he was fairly young and still had teenage daughters and maybe had more to lose than my dad.
Problem with my brothers decision was that they found they couldn’t do anything for him (after they had opened him up)by way of resection or transplant and, i think this is my point, it set him back in a lot of ways. It reduced life expectancy, his quality of life and exposed him to a good deal of pain and suffering that my father avoided (more exposure to infection, pain from surgery etc etc).
All i would say is that some times no intervention is the best treatment. I know this may not sound very positive to some of you…and a few years ago i felt very differently… don’t be afraid to say enough is enough.
Good luck and God Bless to all of you suffering from this very nasty illness.
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