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Medical Forum / Diseases and Disorders / Cancer / October 2006I feel so helpless
After the Dr. told my DH that he has colon cancer and left the room, he said "I have cancer." That happened in the US and he was transferred back to Canada. Since then everything medical has moved at a snail's pace. He was admitted into a clinical trial 2 months after a hemi colectomy for stage IIIB adenocarcenoma. He is receiving FOLFOX and was originally getting alternating weeks of the trial drug Cetuxamab. He was removed from the trial drug after he had very bad reactions to the Cetuxamab. I believe he is resistant to the drugs they are giving him. He has had very few reactions to treatment in the last 4 months of a 6 month course of chemo. He stopped losing hair, stopped breaking out in 'pimples' on his face and upper torso. When he questions the oncologist the answer is always 'different for everyone'. Not real answers. He doesn't seem to be fighting. He seems resigned. He even says he is living as if he were dying. Today is the last course of chemo. (if his white cell is over1.4) The port-a-cath is to be removed in 2 days. I feel so helpless. > After the Dr. told my DH that he has colon cancer and left the room, he > said "I have cancer." [quoted text clipped - 14 lines] > port-a-cath is to be removed in 2 days. > I feel so helpless. Join the club. My wife has cancer and I too feel pretty dammed helpless. But, I do everything in my power to make her feel loved, everything I can to make her comfortable, everything I can to make her feel special, everything I can to keep things as normal as possible. I felt the same as you at the end of the first bout of chemo. At least, as unpleasant as it was, something was being done about the cancer. Then, suddenly, you felt like you are standing on the edge of the world and about to fall off. Somewhere in the newsgroup there is a post from me with the same subject line as yours. I think a useful question is, are you living or are you dying? We made the decision that living was much more important at present. There will be time enough for dying and that will always be sooner than you want, so try not to hasten it in your mind. Ian Thank you Ian, for your kind support. *lotsa snips* > Join the club. My wife has cancer and I too feel pretty dammed helpless. > But, I do everything in my power to make her feel loved, everything I can > to make her comfortable, everything I can to make her feel special, > everything I can to keep things as normal as possible. I'm trying, I really am. He tells me how special I make him feel and thanks me for all the 'little' things I do for him. He knows it is because I love him. > I felt the same as you at the end of the first bout of chemo. At least, as > unpleasant as it was, something was being done about the cancer. Then, > suddenly, you felt like you are standing on the edge of the world and > about to fall off. Somewhere in the newsgroup there is a post from me with > the same subject line as yours. My fear is that the Canadian health care system isn't doing all they can because of money. He missed several treatments because of low white cell count but (I was told) because it would have cost them $3,000.00 per treatment, they didn't give him the meds that would boost his count. > I think a useful question is, are you living or are you dying? We made the > decision that living was much more important at present. There will be > time enough for dying and that will always be sooner than you want, so try > not to hasten it in your mind. > > Ian He loves to cruise so, as soon as I saw the date chemo would be completed, I planned a cruise. Yes, we are living! We greet each other and every day as a gift. I am trying to keep that 'stiff upper lip' but I feel so alone. I am 2000 miles away from my family and friends. Except for his mother, his family has deserted him. They haven't visited, phoned or written in over 7 months. He has 1 dear, lifelong friend who phones regularly and drives 200 miles to visit when he can. *Hugs* > My fear is that the Canadian health care system isn't doing all they can > because of money. > He missed several treatments because of low white cell count but (I was > told) because it would have cost them $3,000.00 per treatment, they didn't > give him the meds that would boost his count. He's had entirely the correct treatment, so what's the problem? The drugs which boost the white count aren't always used because there is no evidence that they provide a benefit to the patient. I suspect his treatments were delayed rather than missed. I feel your pain, but you seem to be casting about for someone to blame. > "S Gladman" <sugar-glad@cogeco.ca> wrote in message > > [quoted text clipped - 9 lines] > delayed rather than missed. > I feel your pain, but you seem to be casting about for someone to blame. The man was anemic for a long time and told to take iron tablets; no investigation until she insisted on a colonscopy, which took 8 months. For years now, doctors have been "screening out" (not accepting or firing) unhealthy or older patients. For many years now, doctors only want healthy, young, low-maintenance, uncomplicated patients. There are only a few doctors who will speak about it, or admit that it's happening. J PS For the casual lurker, I'm speaking about Canada, although I've seen indications that the same or similar is happening in UK > > He's had entirely the correct treatment, so what's the problem? The drugs > > which boost the white count aren't always used because there is no evidence [quoted text clipped - 6 lines] > For many years now, doctors only want healthy, young, low-maintenance, > uncomplicated patients. Sorry Steph, I did not mean cancer or heart specialists (or GPS' involved in their care); I have no doubt that most cancer and heart patients get the best of care, and as prompt as possible. J >> "S Gladman" <sugar-glad@cogeco.ca> wrote in message >> > [quoted text clipped - 15 lines] > The man was anemic for a long time and told to take iron tablets; no > investigation until she insisted on a colonscopy, which took 8 months. That was perhaps a fault of his physician, but not the entire health care system. > For years now, doctors have been "screening out" (not accepting or firing) > unhealthy or older patients. [quoted text clipped - 6 lines] > PS For the casual lurker, I'm speaking about Canada, although I've seen > indications that the same or similar is happening in UK And if it's true in Canada and the UK, it's certainly true in the US system >> For years now, doctors have been "screening out" (not accepting or >> firing) unhealthy or older patients. [quoted text clipped - 9 lines] > And if it's true in Canada and the UK, it's certainly true in the US > system As long as a person has health insurance, this is not a problem in the USA. More likely, there would tend to be more exhaustive investigations than warranted because of fear of malpractice lawsuits. Here people get screened out for lack of insurance coverage/inability to pay, not for having complicated cases. Fig >>> For years now, doctors have been "screening out" (not accepting or >>> firing) unhealthy or older patients. [quoted text clipped - 19 lines] > > Fig My understanding is that finding a GP in the USA is very difficult in many areas. Which is one reason people go straight to the specialist. And a reason that US health care consumes almost twice the GDP which every other western country spends, without any evidence at all of benefit in terms of population outcomes. >>>> For years now, doctors have been "screening out" (not accepting or >>>> firing) unhealthy or older patients. [quoted text clipped - 25 lines] > every other western country spends, without any evidence at all of > benefit in terms of population outcomes. This discussion isn't about population outcomes. It is about people with complicated conditions, maybe multiple problems that are hard to sort, that could be painful, impact life negatively, cause people to derrive less enjoyment from life, be less productive (I'm expanding on what J posted). The health problems they have may not kill them, but they can greatly diminish quality of life. They are chronic, not acute, so they get pushed down on Canada's system &` are probably better served in a fee-for-service system such as USA. And, yes, you do get some who insist on a 2nd opinion for a hangnail, but people don't wait sometimes years to get treated or for appointments with specialists. And it is more costly - no doubt about it. I'm sure it's true there are places where GPs are hard to come by - small towns sometimes have trouble attracting them & also poorer areas. Also more docs are specializing. Many become 'family practice' docs, which is a specialty. And the Physicians Assistants (PA) - I do not find that term at all descriptive of what it is, someone who goes through medical school training minus residency - are filling the gap. Also nurse practicioners set up shop to treat minor ailments. Wal-Marts & other stores are opening Nurse-In-a-Box treatment centers for convenience (& profit). I do not think this is good for our overall system for a number of reasons I won't go into here. But they are convenient & quick for routine, uncomplicated matters. Some aspects are similar under the 2 systems. 'Desirable' areas with large population concentrations are better served because docs want to live there. If you live somewhere remote, you will travel more to see specialists. And to go to the opera, for fine dining, shopping & other big city amenities. Fig > My understanding is that finding a GP in the USA is very difficult in many > areas. Which is one reason people go straight to the specialist. And a > reason that US health care consumes almost twice the GDP which every other > western country spends, without any evidence at all of benefit in terms of > population outcomes. In sparsely populated and extremely poor and rural areas....like the backwoods in the Appalachians.. Not only GP's but all. But there are certainly enough to go around in the urban areas. I would assume that the same is true in Canada. I repeat, comparisons are odious. I do not understand why the Canadians insist on saying how much better off they are with the health system they have. Each system has its flaws. Certainly BBC "Health" does not pull any punches in their coverage of NIH. >> My understanding is that finding a GP in the USA is very difficult in >> many areas. Which is one reason people go straight to the specialist. [quoted text clipped - 10 lines] > health system they have. Each system has its flaws. Certainly BBC > "Health" does not pull any punches in their coverage of NIH. Turtletrot - I was thinking of you as you were talking with Monkey's Unkkle before his liver surgery. Have you heard anything at all from him? He's been on my mind & I'm concerned that he hasn't been back here. Maybe recouperating. Fig >> My understanding is that finding a GP in the USA is very difficult in >> many [quoted text clipped - 13 lines] > system they have. Each system has its flaws. Certainly BBC "Health" > does not pull any punches in their coverage of NIH. I was responding to someone who was denigrating the Canadian system > I was responding to someone who was denigrating the Canadian system If you mean me, that's a little strong. Different systems have their strengths/weaknesses. Fig >> I was responding to someone who was denigrating the Canadian system > > If you mean me, that's a little strong. Different systems have their > strengths/weaknesses. > > Fig Not you, Fig......... The lady whose husband has colon cancer Addendum: There seems to be a ground swell here (US) of "Family Care Centers." I think the term Gen4eral Practionioner has gone out of style. There are now "Amily Doctors." (so like trashman is now a sanitation engineer - a rose by any other namet.....) > Addendum: > [quoted text clipped - 3 lines] > (so like trashman is now a sanitation engineer - a rose by any other > namet.....) OK FAMILY DOCTORS. Sorry for thick fingers. I have no proof that he is not getting proper treatment for his cancer. I do have over 7 years experience with the Canadian health care system. I could fill many pages with incidents of undiagnosed and misdiagnosed illnesses. On topic for this newsgroup is one that happened about 5 years ago. An emergency room visit because of 'chest pain'. Other symptoms discovered in questioning and tests were anemia and black stools with irritable bowel syndrome. After a small gastric ulcer was discovered with an upper GI all tests ceased and he was sent home after 2 units of blood and a Rx of Nexium. The Dr. said he was going to do a colonoscopy but decided against it after the discovery of the small ulcer. BTW, This was the same hospital where SARS was discovered 11 days after he was discharged. He reported black stools and irritable bowels at subsequent office visits and tests showed anemia. The Dr prescribed iron. Many times I requested a colonoscopy and/or at least a hemocult test since the Dr insisted the black stools were caused by the iron tablets. He would reply that it would take some time to arrange (but never followed through) and IMHO tried to make me feel like an ignorant person for even asking. He now insists that HE had suggested it some time ago! pure CMA Ellen >> My fear is that the Canadian health care system isn't doing all they can >> because of money. [quoted text clipped - 7 lines] > treatments were delayed rather than missed. > I feel your pain, but you seem to be casting about for someone to blame. >I have no proof that he is not getting proper treatment for his cancer. > I do have over 7 years experience with the Canadian health care system. [quoted text clipped - 20 lines] > > Ellen Some of your anger may be justified, but maybe your objectivity isn't entirely intact > Thank you Ian, for your kind support. > *lotsa snips* [quoted text clipped - 36 lines] > > *Hugs* I thought that stiff upper lip thing was for us Brits? I have to say it has really helped that our friends have flooded in. At times we thought it might be nice to have a weekend alone. I'm sorry that you don't have that luxury. Are his family aware of the seriousness of his illness? If not, maybe it's time to tell them. Sometimes petty arguments and stubbornness create situations that in the cold light of day, knowing all the facts, that we would not want to be. You don't really sound as bad as you might think. Denial - always good for the odd break from reality, Blame - why the heck can't they just cure this dammed disease, Inadequacy - why the heck can't I just make everything better, Anger - why can't everyone cut the crap and be friends. I'm sure that everyone in our situation feels all of these in different measures at different times. Forgetting about your partner's friends/family, if you have a good friend talk to them. I'm not religious but if you are then the clergy are good at listening and have often come across these situations before. Oh, then there is the wine, not too much though. Ian > After the Dr. told my DH that he has colon cancer and left the room, he said > "I have cancer." [quoted text clipped - 14 lines] > port-a-cath is to be removed in 2 days. > I feel so helpless. Hi, I hope you don't mind a question. How did your husband join a clinical trial? Why did he select the Cetuximab trial? Ken Hi Ken, My husband is Canadian. Personal choices in health care are few in Canada. As 'luck' would have it, the Oncologist that was chosen for him was in the area where a portion of the trial was being conducted. My DH was selected because he fit the profile. There are 'wait time' lists and since it had been almost 2 months since the colectomy and further treatment seemed to be some unspecified time in the future, he grabbed the chance for the trial. The chemical therapy was chosen for him. Ellen >> After the Dr. told my DH that he has colon cancer and left the room, he >> said [quoted text clipped - 27 lines] > > Ken > Hi Ken, > [quoted text clipped - 7 lines] > > Ellen My personal experience is that choices in the Canadian health care system are very extensive. Every province is different, however. BTW, My DH did have the choice of remaining in the trial even though he chose to discontinue the Cetuxamab because of the side effects. There are perhaps 2 or 3 still taking the Cetuxamab, the others have had to withdraw because of the side effects. Ellen > Hi, > > I hope you don't mind a question. How did your husband join a clinical > trial? Why did he select the Cetuximab trial? > > Ken |
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