Hi all it is with great regret I have to post this on here, I have spent the last few days in Bath Royal United Hospital undergoing tests and they have discovered I have got Leukemia. I have now got to decide if I should go for treatment or not, PLEASE!!!!!!!!!! Don't badger me or preasure me into going for treatment it has to be my choice. My thoughts are to say sod it and have a wild party and go out with a bang but it comes down to one question. That is, if I go for treatment and decide to stop half way through will I go from bad to worse or will I have a few days of good health before I deteriate. If I do go from bad to worse if I stop treatment I will not go for treatment and basically come home to die.
My Health
- Thread starter Joe_T
- Start date
I am truly sorry about your bad news. Keep your mind strong and fight on. I will not badger, I think loading up with poisons to kill cancer is counter-intuitive, I would seek out a Naturopathic Physician and attempt to heal my body so it can kill the cancer. For now, stay away from sugar, cancer feeds on sugar like a rat on garbage. Fight the fight on your terms, not the drug company's
johnwhelan
Well-known member
Talk it through with your quack, a lot of Americans are into natural solutions, their insurance companies like them as the patients die off quicker at lower cost. Doctors are rather odd creatures they avoid treatments that have side effects themselves but promote them to others.
I had one friend who was given a couple of years to live many years ago and he enjoyed himself cramming as much as possible into his final months.
Watch the finances, my father-in-law had cancer and died a few months before his life insurance expired. I don't think he would have liked to live a few extra months to leave his widow worse off. If you are married take your wife through all your finances and make sure she understands them. Three years after my father died the bank rang up, what should we do with this term deposit that has come to the end of its term. Mother didn't even know about its existence.
If you have life insurance pay the premiums, sounds dumb but another acquaintance ran his own company, went down with cancer and the paying premium was overlooked on a $1,000,000 life policy. No premium no payout.
Cheerio John
I had one friend who was given a couple of years to live many years ago and he enjoyed himself cramming as much as possible into his final months.
Watch the finances, my father-in-law had cancer and died a few months before his life insurance expired. I don't think he would have liked to live a few extra months to leave his widow worse off. If you are married take your wife through all your finances and make sure she understands them. Three years after my father died the bank rang up, what should we do with this term deposit that has come to the end of its term. Mother didn't even know about its existence.
If you have life insurance pay the premiums, sounds dumb but another acquaintance ran his own company, went down with cancer and the paying premium was overlooked on a $1,000,000 life policy. No premium no payout.
Cheerio John
Joe,
This is sad news, and I'm sure it's a boulder to try to accept, swallow, and chew, but keep this in perspective and don't do something crazy. I think of you as a virtual friend and a dear one at that. You've been with the Trainz community for a very long time, and have created really nice content that we enjoy. And I'll be selfish here. I want you around to creat more content!
Now I'm not going to badger you about going for treatments, but may I say that the treatment course for Leukemia today is far more successful than it was only a few short years ago. A former coworker of mine was diagnosed 9 years ago with it. He went for the treatments, is now cancer free and has been for the past 5 years. Has he licked it? We don't know, but the good thing is he's still alive and able to return to work if he so chooses. He has a back problem which keeps him out of work, but that's another animal. A current coworker's mom was diagnosed 5 years ago. She's clean now and doing very well. I can't say how it will work for you, or what the treatments are like. Each person is different, but what I'm saying is the odds are far better now than they were 20 years ago with this.
Nuff said on this.
Now I too have been through crisis at a few times in my life, and when I thought the end was near and ready to jump in front of a train, something inside me said don't do that. In 2003, I was diagnosed with mixed papillary-follicular thyroid cancer. This is one of the worst kinds - like a 80-20 ratio with 80% fatal, and 20% okay, well I came out on the 20% side. Most thyroid cancer is the opposite. with a 90% good ratio if caught in time. Whith the mpf kind, it likes to go for the lymph nodes immediately then travel everywhere else. My lymph nodes were, and still are clear today. Working up to the surgery, the pressure, and tension was so bad, I saught outside help with a councelor. I had no family support even though we all live together. No one came with me for my initial tests, and the only reason why I got a ride home from the biopsy and surgery was because I wasn't allowed to drive. No one came to see me in the hospital, and no one was there for my test results. I sucked it up and dug in myself. My British roots came out and my upper lip stiffened as I dealt with the news. Anyway, the councelor was able to walk me through the hurdles, and I survived. There are no signs of the cancer today, although I am missing a little butterfly wing.
Then after I thought this had gone away, and I actually was feeling pretty well, I started with rotten times again. This time it was muscle twitching, tremors, stiffness, fatigue, an extra grumpy personality (more so than my normal grumpy self), short temper, etc. After a lot of stressful and painful tests, I was told it was dystonia. This later was changed in 2006 to atypical parkinsonism, which is not really a good diagnosis. You can live with regular PD for a lifetime. If this really is atypical or a PD-Plus form, the prognosis is something like 15 years from diagnosis. Up to now PD meds have helped, whichi is a good thing but I'm now at the end of my run with my honeymoon period. After 6 years, they become less and less effective, and the side-effects become worse.
And now finally the end came at me again. I had a mini-stroke about 3 weeks ago. This I was told may have been caused by some meds I was taking to raise my BP. After spending 4 days in the hospital, along with a long restful 2 weeks off, I am doing better. My left hand works again, and I don't droole as bad. The PD causes drooling anyway, but I'm no longer mopping up puddles!
What did I get out of all this? I take things in perspective. We're all here for a short time, and we have a job to do. I'm not trying to minimize your situation in any way as your's really is quite grave, but what I'm trying to say is I see things differently. After the close call with cancer and now the ongoing life with PD, I really had what I call a "rude awakening". I never take anything anymore for granted. I now go storm chasing, yes I search for super-cell thunderstorms in the Great Plains during the spring and early summer. I don't care what it costs because I want to do this while I still can. I know that nothing is forever, but I want to explore and absorb what I can while I can! There are still things I want to experience before my end comes, and I'm doing whatever I can to do that. I no longer have any savings or retirement money. Who cares. I may not be around long enough to retire from my job. I know this is hard thing to explain, but this is me now. The sky is no longer blue. It's blue with extra blue here and there, with puffy white clouds that look like cauliflower heads and cotton at the same time! The same with grass and flowers. I see the details with them as well. And when it comes to family and friends, I cherish them the most because I've lost a lot of them too to cancer and other disease, well before their prime. When we were kids, and growing up, we took everything for granted. Family such as our grandparents, aunts, uncles, parents, and everyone else, we thought lived forever. Oh I wish they were still here today! I have so much to show them and tell them, but I can't!
Anyway, I could go on, but I think I've said too much already. If you need someone to talk to, by all means ping me, email me, etc. I will always call and respond back. You are at a desparate end right now, but please don't give up hope.
John
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Hi Joe, I don't envy you your situation, but have given it quite a bit of thought. How easy it is for one to imagine an end to all this. Some of us have lived long enough, or have found themselves in circumstances that force them to consider an end would not be the worse possible outcome.
The problem, as I see it is one of suffering, that is...how much? We can cavalierly imagine a massive heart attack that takes us within seconds, perishing after a few moments of tremendous pain and fear, but my life, at least, was never so straightforward. I know if I made the choice to go it would involve months or years of humiliating dependency, constant horrible pain, and more than likely uncontrollable bowels. You see, it's not the "going" that we men find awful, we all know we're going someday. Rather, it's the years of disintegration, the years of torment, the years of any money we had saved for our loved ones being sucked away into treatments that sometime fail in the end anyway that we can't abide. It's watching the people that love you begin to look down at their hands instead of into your face, the transformation of a loved man into a burden, the uncomfortable time they have to spend in your presence, and the relief in their eyes when visiting time comes to a close.
Truly, if I could take this burden from you I would.
Then I would find out how much of a burden this would place on my family, how much money it is going to cost me and them, how much the symptoms will transform me, and how much hospice care can be expected. Will I have access to unlimited morphine when the pain is unbearable? Will I become bed ridden and completely dependent on others for basic care? Am I going to die while some visiting nurse watches "Wheel of Fortune" on the TV that they never turn off because they think it's good company for me when all I want is quiet so I can pray, and maybe die?
I'd rather go on my terms, make a plan, take the money and go do something epic without expecting to return. I don't want to end up leaking from every orifice as the audience looks on shaking their heads and crying. I'm comfortable with pain, but don't want to feel it's embrace for months and months without respite.
Unfortunately life has a way of "nickle and diming" us to death! Mercy is quick and unexpected, but more than likely it will be slow, agonizing and more akin the boiling the frog slowly than anything else.
Consider having a plan "B".
The problem, as I see it is one of suffering, that is...how much? We can cavalierly imagine a massive heart attack that takes us within seconds, perishing after a few moments of tremendous pain and fear, but my life, at least, was never so straightforward. I know if I made the choice to go it would involve months or years of humiliating dependency, constant horrible pain, and more than likely uncontrollable bowels. You see, it's not the "going" that we men find awful, we all know we're going someday. Rather, it's the years of disintegration, the years of torment, the years of any money we had saved for our loved ones being sucked away into treatments that sometime fail in the end anyway that we can't abide. It's watching the people that love you begin to look down at their hands instead of into your face, the transformation of a loved man into a burden, the uncomfortable time they have to spend in your presence, and the relief in their eyes when visiting time comes to a close.
Truly, if I could take this burden from you I would.
Then I would find out how much of a burden this would place on my family, how much money it is going to cost me and them, how much the symptoms will transform me, and how much hospice care can be expected. Will I have access to unlimited morphine when the pain is unbearable? Will I become bed ridden and completely dependent on others for basic care? Am I going to die while some visiting nurse watches "Wheel of Fortune" on the TV that they never turn off because they think it's good company for me when all I want is quiet so I can pray, and maybe die?
I'd rather go on my terms, make a plan, take the money and go do something epic without expecting to return. I don't want to end up leaking from every orifice as the audience looks on shaking their heads and crying. I'm comfortable with pain, but don't want to feel it's embrace for months and months without respite.
Unfortunately life has a way of "nickle and diming" us to death! Mercy is quick and unexpected, but more than likely it will be slow, agonizing and more akin the boiling the frog slowly than anything else.
Consider having a plan "B".
I have made my choice and that is not to go through with treatment I have had enough of hospitals due to personal reasons I don't wish to go into now. So what does this mean for me, it means I have 4-6 weeks left inwhich to get my affiars in order which I am doing quickly. I know all of you wanted me to go for treatment but as stated above I have suffered enough and now just want the suffering to end. Not much else to say really other than this won't be my last post I will post a screen shot or 2 before I go 
M8, I dont know you, but I do know your age. Sure, you beat me by a few months, but 34 years is way to early for the game to end.
Dont think of trouble in the now. Remember the good times and that only you can make those come again in the future.
I have multiple friends and acquaintances who had the same or similar diagnose as you. They all went for the treatment, laughed death in the face, and are still dancing today.
The game is not over untill the fat lady sings. That can be decades from now.
Dont think of trouble in the now. Remember the good times and that only you can make those come again in the future.
I have multiple friends and acquaintances who had the same or similar diagnose as you. They all went for the treatment, laughed death in the face, and are still dancing today.
The game is not over untill the fat lady sings. That can be decades from now.
cascaderailroad
New member
This is very upsetting, and very hard to deal with ... what if it was me ... or my spouse ... what would I do ?
I briefly read up on things, and the prognosis is much better than 40 years ago ... what does your doctor estimate, should be your deciding point.
I briefly read up on things, and the prognosis is much better than 40 years ago ... what does your doctor estimate, should be your deciding point.
Joe, you are right to feel that you have to make your own mind up about this but since Monday is still a few days away, and there is still time to change your mind I would like to tell you that 15 years ago I was given 24hrs to live. I had a 2 year old daughter at the time and my wife was 8 months pregnant. I had surgery and am glad that I did for their sake. I currently take some serious meds which leave me at risk of Leukemia and I undergo regular tests to make sure that its not creeping up on me. In 2008 I was also found to have cancer and went under the knife again. I am only 45 years old, I have a grandmother and both parents still alive. My wife is younger then me and my youngest child is 11. I really find it hard to come to terms with the fact that these people that love me so much, and whom I love so dearly could someday be without me. It hasn't been easy but I live for the moment and cherish each of those moments that I have with my immediate family.
It takes a brave decision to take on treatment for Leukemia but before you turn your back on it spare athought for those that will miss you
Good luck with whatever you decide, kindest regards, Andy
It takes a brave decision to take on treatment for Leukemia but before you turn your back on it spare athought for those that will miss you
Good luck with whatever you decide, kindest regards, Andy
johnwhelan
Well-known member
I think I respect the decision, it is about quality of life. I have a cousin who successfully had a bone marrow transplant but out of the dozen or so children who were in the same London hospital at the same time who had bone marrow transplants she is the only survivor.
Leukemia has different causes and the treatment varies accordingly so you really need to know a little more about the expected outcomes etc before reaching a decision.
I wish you a happy life.
Cheerio John
Leukemia has different causes and the treatment varies accordingly so you really need to know a little more about the expected outcomes etc before reaching a decision.
I wish you a happy life.
Cheerio John
Stationbeem
Over 60's Club
Joe
Even though I don't know you I have the utmost respect for the path you have chosen. It could not have an easy choice to make. You will be missed by many Trainzers on this forum. I think I speak for most of us by saying our thoughts and prayers will be you and your loved ones in the comming weeks.
Enjoy the time you have left and make sure you do go out with a bang.
My deepest respects . Dave.
Even though I don't know you I have the utmost respect for the path you have chosen. It could not have an easy choice to make. You will be missed by many Trainzers on this forum. I think I speak for most of us by saying our thoughts and prayers will be you and your loved ones in the comming weeks.
Enjoy the time you have left and make sure you do go out with a bang.
My deepest respects . Dave.
Joe,
I am saddened by your decision, but I understand why you are doing this. If I had my choice, and my prognosis was not good with my strike with cancer, I would have done the same thing. At the moment, I am facing a different diagnosis than early onset Parkinson's disease. If this is MSA, aka Multiple System Atrophy which is one of the Parkinson's "Plus" syndromes, then I have only a few years to live. So right now I am facing issues that are out of my control. There's not much I can do about this, and intend to do what I can while I can. I mentioned this in my bigger thread before. The symptoms of this go beyond just the tremor, rigidity, and stiffness. To put things bluntly, they effect the plumbing as well as other more personal things, which would be ****s in the forum. Heck I don't even get that morning thing anymore. Nothing, nada. This is very demoralizing at my age! In fact my blood pressure is so erratic, I can't jump out of bed otherwise I'm on the floor. So now I worry about getting up to use the bathroom at night! I'm only 50 going on 51 and act like I'm 91!
Not to become religious here, but as they say this is in God's hands. Only he knows what's next for you, me, or for any of us. We have no control over what cards are dealt, or what path we take with our lives. This includes having families, following ones dreams, or the way we live in general. The thing is you are awefully young to be doing this. At 34 you still have a full life to live. It's worth the gamble, which today has excellent odds compared to a decade or more ago. If you were over to 80, I'd say that you have made a sad but just decision. When my grandmother was dying from pancreatic cancer, all she wanted was for people to let her die. She pleaded with us to give her extra medication to die. She was down to 38 lbs by her last days. She was a mere skeleton with that was brownish-yellow colored from the jaundice. The problem was etically we could not do anything for her. She had to suffer on her own before she went. So what Ed posted is what I saw when I lost her and other relatives. They get reduced to nothing, but skin and bones, and that's it. They're in awful pain that not even morphine will kill. They can't eat because they are so nauseated. They have to wear diapers and a catheter that cause other infections, which won't heal. The medication for the nausea doesn't work all the time, so in general they are in worse shape than even before. Is this really what you want?
At this point in the game, still consider your options. It's only a few days past Monday to say no, and you can still change your mind. This is not like you have a coupon that'll expire if you don't use it by a certain day. The other thing to think about too is your medical system is far better than it is here in the US. The NHS has its own bag of worms, but it's far better than what we have today here. At least you still have medical coverage even though you're not working. Here in the US, if people can't afford coverage, they're put on a barebones system, which only covers 80% of everything. This is a drop in the bucket, and many people along with their families, end up on the street trying to pay for medical bills. The hospitals and insurance companies will put people into bankruptcy with high premiums, and high out-of-pocket costs. They'll even go as far as to deny treatment because it costs them too much, or worse stop treatments because they feel that you've had enough and are allowed only a certain number! So essentially the only people here that have excellent coverage are those that can afford it. This isn't a fair situation, but I won't go into politics here because it's not appropriate.
So having said this, I respect your decision, and I hope you remain comfortable throught your last days. Again my door/PC email is open should you want to talk about anything including trains. If you want to just talk on the phone, send me your phone number, and I will call you any time. Even if it's midnight my time. Ping me, call me, email, etc. I'm usually up to 1am or later (-5 GMT) my time usually.
Best of luck mate always,
John
I am saddened by your decision, but I understand why you are doing this. If I had my choice, and my prognosis was not good with my strike with cancer, I would have done the same thing. At the moment, I am facing a different diagnosis than early onset Parkinson's disease. If this is MSA, aka Multiple System Atrophy which is one of the Parkinson's "Plus" syndromes, then I have only a few years to live. So right now I am facing issues that are out of my control. There's not much I can do about this, and intend to do what I can while I can. I mentioned this in my bigger thread before. The symptoms of this go beyond just the tremor, rigidity, and stiffness. To put things bluntly, they effect the plumbing as well as other more personal things, which would be ****s in the forum. Heck I don't even get that morning thing anymore. Nothing, nada. This is very demoralizing at my age! In fact my blood pressure is so erratic, I can't jump out of bed otherwise I'm on the floor. So now I worry about getting up to use the bathroom at night! I'm only 50 going on 51 and act like I'm 91!
Not to become religious here, but as they say this is in God's hands. Only he knows what's next for you, me, or for any of us. We have no control over what cards are dealt, or what path we take with our lives. This includes having families, following ones dreams, or the way we live in general. The thing is you are awefully young to be doing this. At 34 you still have a full life to live. It's worth the gamble, which today has excellent odds compared to a decade or more ago. If you were over to 80, I'd say that you have made a sad but just decision. When my grandmother was dying from pancreatic cancer, all she wanted was for people to let her die. She pleaded with us to give her extra medication to die. She was down to 38 lbs by her last days. She was a mere skeleton with that was brownish-yellow colored from the jaundice. The problem was etically we could not do anything for her. She had to suffer on her own before she went. So what Ed posted is what I saw when I lost her and other relatives. They get reduced to nothing, but skin and bones, and that's it. They're in awful pain that not even morphine will kill. They can't eat because they are so nauseated. They have to wear diapers and a catheter that cause other infections, which won't heal. The medication for the nausea doesn't work all the time, so in general they are in worse shape than even before. Is this really what you want?
At this point in the game, still consider your options. It's only a few days past Monday to say no, and you can still change your mind. This is not like you have a coupon that'll expire if you don't use it by a certain day. The other thing to think about too is your medical system is far better than it is here in the US. The NHS has its own bag of worms, but it's far better than what we have today here. At least you still have medical coverage even though you're not working. Here in the US, if people can't afford coverage, they're put on a barebones system, which only covers 80% of everything. This is a drop in the bucket, and many people along with their families, end up on the street trying to pay for medical bills. The hospitals and insurance companies will put people into bankruptcy with high premiums, and high out-of-pocket costs. They'll even go as far as to deny treatment because it costs them too much, or worse stop treatments because they feel that you've had enough and are allowed only a certain number! So essentially the only people here that have excellent coverage are those that can afford it. This isn't a fair situation, but I won't go into politics here because it's not appropriate.
So having said this, I respect your decision, and I hope you remain comfortable throught your last days. Again my door/PC email is open should you want to talk about anything including trains. If you want to just talk on the phone, send me your phone number, and I will call you any time. Even if it's midnight my time. Ping me, call me, email, etc. I'm usually up to 1am or later (-5 GMT) my time usually.
Best of luck mate always,
John
amigacooke
Well-known member
Sorry to hear this news. You are in my prayers.
ex-railwayman
New member
Hello Joe,
I'm extremely saddened at your news and just wanted to say many, many thanks for all the British assets you've offered us over the years, the enginesounds, reskins, etc, they'll be your legacy.
Good luck fella, you have to live with your decisions, so, make them wisely, but, enjoy things whilst you still can, you're a brave man to make the choice.
All the very best to you.
Cheerz. ex-railwayman.
I'm extremely saddened at your news and just wanted to say many, many thanks for all the British assets you've offered us over the years, the enginesounds, reskins, etc, they'll be your legacy.
Good luck fella, you have to live with your decisions, so, make them wisely, but, enjoy things whilst you still can, you're a brave man to make the choice.
All the very best to you.
Cheerz. ex-railwayman.
2995Valliant
Well-known member
Hi Joe,
I too am truly sorry to hear this. My thoughts are with you.
Best regards,
Anthony
I too am truly sorry to hear this. My thoughts are with you.
Best regards,
Anthony
Joe
I just saw this thread and this is sad news indeed. My prayers to out to you and your loved ones. I respect your decision and will not try to convince you one way or the other. It's a personal decision and there's nothing more personal than contemplating our own demise. God bless you Joe and we will certainly keep you in our thoughts and prayers. Remember, you have a family here on the forums, so keep us up to date.
Mike
I just saw this thread and this is sad news indeed. My prayers to out to you and your loved ones. I respect your decision and will not try to convince you one way or the other. It's a personal decision and there's nothing more personal than contemplating our own demise. God bless you Joe and we will certainly keep you in our thoughts and prayers. Remember, you have a family here on the forums, so keep us up to date.
Mike