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Greetings fellows. Still alive, after many sideroutes and battles, I did not die, not yet.
I got 2 outstanding tumours a bit over a year ago, giving me about 0 chances to be alive for the next 6 months. That is now to be a year ago. Stage 4 GBM. So what happened? Treatments happened. Radiation and chemo. Still doing chemo. Once a month, for 5 days, I do it. It sucks, but hey, keeps me alive.
Sold my house, got to the private cancer care, (the doctor used to work in the public sector so now I got my old doctor but I have to pay... but I trust her after a decade of working together). Yet, they did not make changes for my primary public care. Their function for me is to be ready if an experimental thing opens up, or a trial, to funnel me there to get the seat (or bed). They are engaged in most research so they get the first grabs. Paper work, all that needs to be done, adn they're much quicker than the publics. As for day to day care, the publics do just fine (private would not change a thing). So, I got super lucky as the chemo worked to demolish the other tumour, and now I only have one tumour. Sure, the disease is still there, but the point is, it's kind of under control for now.
Also, the public did not want to continue after 6 rounds with this new one, so the private doc (a personal colleague and friend of the publics doc) convincer her to give it another 6 rounds, if my body holds up. To modify "the protocol". The powers that be, she took a big chance and "forgot" to mention the new protocol for her superiors, on my favour. She took care of it. Or my doctors somehow just collaborated and crossed the lines and it ended up great for me. Now, I am still alive and will turn 40 in July. Working full time, though this will be my last job , I like it and I get tons of vacation per year.
Have dated, travelled, in therapy, and looking forward to getting a few more years into this broken machine. Most importantly, the extra time has given me an opportunity to be a father to my son and daughter, and I've seen them grow. My son turns 8 next week and my daughter is 9. I am a bit lonely, my friends with this condition have all died. I mostly talk to my therapist and try to write in a journal. I Iam fighting a battle against middle age, the chemo (and the cortisone), stress and lack of rest has made me overweight. Not on BMI, but muscle loss and fat gain. I am active, I swim a lot, bike, walk and go to the gym when I have the time. This is not very important, except that I need to be in a good shape to withstand chemo. I reckon the publci will stop after my 12th round for sure. If it is still giving me results, I want to continue in the private. They're likely to take a breather too, but it's not a bad idea to live healthy regardless.
I am now 6 months free of seizures, I am happy about that. You would not know I had brain cancer, or even brain issues if you saw me or talked to me. I do experience extreme fatique at times and I need to be sure I can lie down. It feels like passing out at any moment.
I have no goals. I wish to have a good relationship with someone who is not too afraid or will not run when I get ill again. I wish to avoid dying alone. Waiting to die in a bed with no help has been traumatising. Having a seizure, and then another seizure, and local seizures at the hospital has been scary. Mornings can be difficult, it is an active decision to not give up. Though, it seems to me that I keep on living regardless of my efforts or the lack of.
I wish to have more time. I don't know if I will live a month or two, a year or two. There is no reversing ithis, and I have had my Will made. I've managed the paper work and sent in the DNR notification.
I still wish to hike. Finish up the PCT. I wish to see my friends, I wish to make new friends. See my kids grow, be there for them. I think of them when time's get difficult - and they do. I've no future in terms of gathering more money, building a career. At the same time, I am free of those artificial things. Yes I need food and money. I still do work. I've no wisdom to give, except we will all die, it's not a bad thing, the terror of it comes from not knowing when, except it is around the corner for myself. For you? I wish nothing but the best.
I struggle, but mostly mentally and emotionally. Physical struggle is OK. It is there, but it isn't more than that. Physical. It is the horror and terror and the lack of human contact that is the real struggle. It is not by any means he same thing as human touch (that is important too). I've dated. Women seem to really like the idea of me being completely honest because there's no time to play any games and pick up roles. It's not a gender thing, but I'd wish they'd come up open and honest, too. Not meaning lies, but ready to discuss, ready to connect. Most aren't. Most don't even look to know themselves. That has been disappointing. Also, it seems to be a powerful aphrodisiac to state I am not interested in sex. Just the person, and that's it (for now).
OK, letting you all know about the situation, we'll see what happens. Wish you all the best.
I got 2 outstanding tumours a bit over a year ago, giving me about 0 chances to be alive for the next 6 months. That is now to be a year ago. Stage 4 GBM. So what happened? Treatments happened. Radiation and chemo. Still doing chemo. Once a month, for 5 days, I do it. It sucks, but hey, keeps me alive.
Sold my house, got to the private cancer care, (the doctor used to work in the public sector so now I got my old doctor but I have to pay... but I trust her after a decade of working together). Yet, they did not make changes for my primary public care. Their function for me is to be ready if an experimental thing opens up, or a trial, to funnel me there to get the seat (or bed). They are engaged in most research so they get the first grabs. Paper work, all that needs to be done, adn they're much quicker than the publics. As for day to day care, the publics do just fine (private would not change a thing). So, I got super lucky as the chemo worked to demolish the other tumour, and now I only have one tumour. Sure, the disease is still there, but the point is, it's kind of under control for now.
Also, the public did not want to continue after 6 rounds with this new one, so the private doc (a personal colleague and friend of the publics doc) convincer her to give it another 6 rounds, if my body holds up. To modify "the protocol". The powers that be, she took a big chance and "forgot" to mention the new protocol for her superiors, on my favour. She took care of it. Or my doctors somehow just collaborated and crossed the lines and it ended up great for me. Now, I am still alive and will turn 40 in July. Working full time, though this will be my last job , I like it and I get tons of vacation per year.
Have dated, travelled, in therapy, and looking forward to getting a few more years into this broken machine. Most importantly, the extra time has given me an opportunity to be a father to my son and daughter, and I've seen them grow. My son turns 8 next week and my daughter is 9. I am a bit lonely, my friends with this condition have all died. I mostly talk to my therapist and try to write in a journal. I Iam fighting a battle against middle age, the chemo (and the cortisone), stress and lack of rest has made me overweight. Not on BMI, but muscle loss and fat gain. I am active, I swim a lot, bike, walk and go to the gym when I have the time. This is not very important, except that I need to be in a good shape to withstand chemo. I reckon the publci will stop after my 12th round for sure. If it is still giving me results, I want to continue in the private. They're likely to take a breather too, but it's not a bad idea to live healthy regardless.
I am now 6 months free of seizures, I am happy about that. You would not know I had brain cancer, or even brain issues if you saw me or talked to me. I do experience extreme fatique at times and I need to be sure I can lie down. It feels like passing out at any moment.
I have no goals. I wish to have a good relationship with someone who is not too afraid or will not run when I get ill again. I wish to avoid dying alone. Waiting to die in a bed with no help has been traumatising. Having a seizure, and then another seizure, and local seizures at the hospital has been scary. Mornings can be difficult, it is an active decision to not give up. Though, it seems to me that I keep on living regardless of my efforts or the lack of.
I wish to have more time. I don't know if I will live a month or two, a year or two. There is no reversing ithis, and I have had my Will made. I've managed the paper work and sent in the DNR notification.
I still wish to hike. Finish up the PCT. I wish to see my friends, I wish to make new friends. See my kids grow, be there for them. I think of them when time's get difficult - and they do. I've no future in terms of gathering more money, building a career. At the same time, I am free of those artificial things. Yes I need food and money. I still do work. I've no wisdom to give, except we will all die, it's not a bad thing, the terror of it comes from not knowing when, except it is around the corner for myself. For you? I wish nothing but the best.
I struggle, but mostly mentally and emotionally. Physical struggle is OK. It is there, but it isn't more than that. Physical. It is the horror and terror and the lack of human contact that is the real struggle. It is not by any means he same thing as human touch (that is important too). I've dated. Women seem to really like the idea of me being completely honest because there's no time to play any games and pick up roles. It's not a gender thing, but I'd wish they'd come up open and honest, too. Not meaning lies, but ready to discuss, ready to connect. Most aren't. Most don't even look to know themselves. That has been disappointing. Also, it seems to be a powerful aphrodisiac to state I am not interested in sex. Just the person, and that's it (for now).
OK, letting you all know about the situation, we'll see what happens. Wish you all the best.
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