March 2022
2 Kudos
Hi Layla18, I'm 68 and have leukemia. I'm lucky with that as Leukemia is one of the kinder ones. I cant stand pain and chose a treatment that doesnt cause pain or degrade my life. When I was a teenager I joined the army, and as a result of that found myself thinking about death and dying because I figured that might make me a better soldier. I've been working on that ever since. When I go to sleep at night I dont lay there fearing death, I feel grateful I am not in pain, and that I have had a fairly long and interesting life. I'm not young anymore and have lived out the things I dreamed of doing when I was young like you. Mourning the loss of a bright and beautiful future must be very very cruel and hard. That isnt fair and its not right and it makes no sense. It is tragic. I can say that when I was a young soldier I worked at a base that repaired tanks and stuff. And as I walked around the place doing things, often tanks would rumble passed me on there way to the workshop. Sometimes I would shiver as I imagined being in a war, facing a tank. I wasnt a very good soldier. Now I know I have some months and maybe 2 years left, and I have a great curiosity about the after life. Is there one? What's it like? Who on earth is right and wrong about it? If there is one, will one young people like you have all their dreams come through, even though not on earth ? For me, I can't imagine what I'll be doing with all that spare time. Still, I know people have souls. And souls grow. I do not understand why illness takes young people away far too soon. I understand why my time is nearly up and I am not sad about it. I have not missed out on anything. You have. I hope and pray that one the other side, all your dreams come true. Heaven will be a better place because of you, and the ones you love and who love you, will be home up there soon with you. I have no doubt you fought a brave and good fight.
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March 2022
A friend of mine has trouble relating emotionally whereas in the spheres he is interested in he expert and has heaps to say. He has had friends who have died of cancer, and I guess you could say he's experienced in watching friends go through terminal cancer. However, when I was diagnosed with cancer, he was a font of knowledge that did not apply to me and my malignancy at all. His great habit was to minimise the stages I was going through because he'd been (vicariously) through it all before. And he was gung ho that extreme treatments that extended life did not degrade quality of life. Which is contrary to what my oncologist was telling me. I settled on a regime that might extend my life with few or no side effects. Mine is one of the kinder cancers. I think he thought I was weak. He did volunteer where to go to get cheap hospital parking, but that information was wrong - I used a different part of the hospital. I put up with all this to help him feel important and needed until one day he diminished, as an act of kindness, the import of aspects fo my condition. I'd had enough so for the next 2 months I ghosted this poor man who was an expert in watching people die of cancer but who had never had it himself. He's not a doctor. Was I mean to him? Later I said sorry to him for me being an arsehole.
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March 2022
Ive recently been diagnosed with Acute myeloid leukemia. I have not experienced any pain or disability due to this condition. I am 68 years old and have chosen a treatment which does not inflict suffering - one which is aimed at preserving quality of life rather than life extension. I have lived a relatively long life and am afraid of pain, but not death so much. For example I don’t lay down in bed at night and worry about dying, nor I worry about pain. I have strong beliefs and am curious about the afterlife. As a young person I was a soldier for a few years. Everyone in their life I guess goes through periods where they are subject to bullying, harassment, humiliation and being treated as if they were stupid and deviant. And when well there are techniques for dealing with that. However, I have just finished a 7 day period of cancer treatment as an outpatient in a private hospital oncology unit. The manner in which I was spoken to by a couple of nurses was disgusting and I nearly walked out. I tried to keep my mouth shut as much as I could. I had to sit in a chair from 8.30am until 5pm each day while connected to a saline drip. That’s all the drip was - saline. Twice a day I had to have a blood test - one in the morning and one at 5pm. I do not live close to the hospital and it was a long drive there and back. I live in an outer suburb in an agricultural area. The hospital had no beds available. The treatment I commenced at the oncology unit consisted of injections once a day and tablets once a day. The whole thing could have been at my local GP’s office. The nurse could have handled it fine, and Clinpath locally could have performed the blood tests. The big plus being that both the GP’s nurse and the local Clinpath staff are very pleasant people, who clearly have professional standards of communication and who are client focussed. This is in stark contrast to two of the staff at the oncology unit of the private hospital. Sadly the only option I had was to endure the humiliation of the oncology unit. Like most people I do not enjoy being humiliated and talked down to and being blamed for things which I did not do. I was told by one nurse that she was sick of having to work until 5pm because of me. The aggression with which she spoke was terrible. It was clear she thought I should not be there for some reason only she knows. I won’t be going there and have lodged a complaint. I am now seeking a new oncologist and new way of being treated. If I am told to go back there I will refuse and will simply cope on my own. In the caring professions, I observed over many years that there are fundamentally two types of personalities involved. Carers and Controllers. Both are needed. However, when controllers get out of control, they can be very cruel and need to be held to account. If you are on the receiving end of a control freak nurses you enjoy humiliating you, complain. Not to them, not in the actual environment, but the administration in writing. There is a good chance you won’t be believed, but do it anyway. And seek alternative places to get treated. I don’t expect to live much longer, but that is irrelevant. It is important to properly the system to stick up for yourself and other patients. That place will never get their hands on me again. I’d rather die alone in my own room, untreated.
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