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Post by Deleted on Nov 1, 2021 7:43:30 GMT
Hope your feeling better this morning space.
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スコットランド
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Post by スコットランド on Nov 1, 2021 11:23:36 GMT
Sat in A&E majors with some IV antibiotics after my temp got up to 39.9 last night. Probably just a minor infection but even those can be fatal on chemo. Luckily starting to feel better. Fuck cancer, fuck chemo and fuck infections caused by cancer and chemo. So sorry to hear what this bastard disease is doing, sending best wishes, hope you're feeling better today and get some positive news.
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Post by Deleted on Nov 1, 2021 11:29:52 GMT
spacein_vader Thoughts with you again man, hope you're feeling better today. Sounds like a rough night.
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Post by Matt A on Nov 1, 2021 12:00:49 GMT
Please keep writing if it helps. Always read them.
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Post by grizzly on Nov 1, 2021 14:50:51 GMT
Please keep writing if it helps. Always read them. same here.
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Post by spacein_vader on Nov 1, 2021 15:42:25 GMT
Got home at 4 am. At 9 they called me back in because they've spotted a pulmonary embolism (blood clot) on my lung. Still in hospital while they decide treatment but thankfully not admitted.
It never rains but it pours
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Post by Deleted on Nov 1, 2021 19:32:42 GMT
I've just read up about blood clots and I hope its one they can sort quickly and send you home. If its a simple one then its blood thinners and you're out. Its apparently quite common with some cancers. It would be better that you didn't have it, but its good that they found it before it or similar can do more harm. Hang in there mate. You can do it.
And yeah, it rains, then pours, but then eventually it stops and the sun comes out (even in the UK so I'm told). Its hard to remember that when you're soaking wet through though.
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Post by Deleted on Nov 1, 2021 22:32:51 GMT
Got home at 4 am. At 9 they called me back in because they've spotted a pulmonary embolism (blood clot) on my lung. Still in hospital while they decide treatment but thankfully not admitted. It never rains but it pours Shit. Hopefully you've had some news by now and it's positive.
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Post by spacein_vader on Nov 2, 2021 7:33:47 GMT
I'm now home. For the next 28 days I have to self administer an injection into my stomach. It's as much fun as it sounds.
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Post by Deleted on Nov 2, 2021 9:03:12 GMT
That sounds unpleasant. I really wish you didn't have to do it and I wish you didn't have the cancer at all, but I am glad they have a treatment for the clot and that its something you can do at home where you have love and support. Take care mate I hope you have good times amongst the bad.
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Post by Deleted on Nov 2, 2021 9:06:33 GMT
I'm now home. For the next 28 days I have to self administer an injection into my stomach. It's as much fun as it sounds. I did that for a month with blood thinner after an accident a couple of years ago. There is a technique - just jab it in quickly and confidently, but the important bit is the needle needs to go absolutely straight in and out. If so, little to no bruising or pain and you're not soon running out of places to do it. Even the very slightest lateral movement of the needle as you do it is what causes the bruising, or was for me. Apols if you know all that.
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Post by Deleted on Nov 2, 2021 9:49:23 GMT
spacein_vader At least you're back home now, got to be better than hanging around the hospital. The stomach injection doesn't sound very nice, at all.
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Post by spacein_vader on Nov 3, 2021 8:59:32 GMT
It gets worse, 28 days is the initial supply I have to do it for 6 months.
In better news the scan showed the tumour isn't growing or shrinking, the chemo has stopped it in its tracks for now. The average lifespan for someone in my position is 6 months from here. That's about the best news I could have expected.
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Post by Deleted on Nov 3, 2021 9:12:25 GMT
Hi Spacey. I honestly really don't know what to say, but saying nothing doesn't work either.
I am glad that the chemo looks like it has given you this Christmas which is what you were hoping for when you went into it, but I hoped that it would make it shrink rather than stop. Well done enduring that mate. It doesn't seem real thinking that 6 months of life is the best news you could have hoped for. I hope you have more than that and that you beat the odds and I hope they come up with a pill you can take rather than a bloody needle. I am glad that they didn't say it was now bigger and that the clot wasn't something that they (or you and a big needle) couldn't deal with. Us geeks have to stick together, especially in this place.
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Post by Deleted on Nov 3, 2021 9:51:11 GMT
Yeah man, I genuinely don't know what to say but, as WK says, at least you will have the Christmas you hoped for. I wish I could do / say more. Is there more chemo to come or is that all you're going to be able to have?
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Post by Honk If You're Horny? on Nov 3, 2021 10:55:11 GMT
Sorry to hear about the injections I'd struggle with those. From a very selfish point of view your situation puts my "problems" into perspective.
Good to hear that the tumour isn't growing, hoping that things stay positive through December and the months after and you have a really special Christmas day.
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JonFE
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Post by JonFE on Nov 3, 2021 12:00:38 GMT
Witchking expressed my thoughts much more eloquently than I could ever do, so spacein_vader try to stay strong and make the best out of this situation; I understand it's easier said than done though...
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Post by Sarfrin on Nov 6, 2021 20:07:05 GMT
I haven't managed to click on this thread for a bit, but I'm glad to see you'll get Christmas with your family. I'm glad you made it over here from RPS too.
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Post by spacein_vader on Nov 7, 2021 8:07:43 GMT
Thanks all for the kind words. I may be able to have different chemos after 12 doses of this one but this is the strongest and most successful against that type of tumour. Trying to stay positive, some days I'm bedbound and that makes it harder.
Making plans to fill the time. One thing I've noticed is that the more Ill I get the smaller the world becomes. Eventually it'll just be home and the hospital. For now I'm fighting back on that as hard as I can. Trips to the coast, to the city I grew up in etc.
One day it'll stop me, but not today.
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Post by Deleted on Nov 7, 2021 18:00:48 GMT
Thanks all for the kind words. I may be able to have different chemos after 12 doses of this one but this is the strongest and most successful against that type of tumour. Trying to stay positive, some days I'm bedbound and that makes it harder. Making plans to fill the time. One thing I've noticed is that the more Ill I get the smaller the world becomes. Eventually it'll just be home and the hospital. For now I'm fighting back on that as hard as I can. Trips to the coast, to the city I grew up in etc. One day it'll stop me, but not today. If it means anything, you're probably out and about more than I am. The last time I went to the coast was probably Summer 2019. You never know, a different chemo might work better on you than the one you've been using. We're all different people. My dad's being treated with Live TB for his cancer, and as archaic as that sounds (and it is), it works. But yep, one day, but NOT today
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mikeck
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Post by mikeck on Nov 11, 2021 13:16:04 GMT
I hate that this thread exists, I hate that there are posters suffering from this fucking disease or dealing with family members who are (my thoughts are with you all), and I hate that I need to sit here and finally write some words about finding out my dad has cancer.
We're all still in limbo about how bad it is, but it's confirmed prostate cancer and whilst they seem to have caught it reasonably early they are waiting to run other tests to see if it has spread. The assumption is that is has spread but they don't know how far. It was only a couple of months ago my 63 year old dad was in great shape and seemed really fit and happy, but already the anxiety, the pain from the biopsy and a groin strain (which we don't know if is related or not) are making him seem older than his years. I fucking hate this disease (I know nobody loves the fucking thing, but it's cathartic to write it down, so I'll say again...fuck cancer).
Turns out I didn't know that my grandfather had it too in his 70's, but his was manageable and was not his cause of death years later, so having just turned 40 this year I'll be quickly making sure I get my prostrate checked as regularly as allowed (not that my dad wasn't getting his checked, he was, and his last check a year ago was all clear).
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mikeck
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Post by mikeck on Nov 11, 2021 13:20:05 GMT
Also, @spacein_vader thanks for sharing what you are going through, I've got one daughter and don't know how the fuck I would handle the situation, but if it's half as clear-thinking as you then I would feel I've handled it extremely well.
Here's to getting to spend Christmas with your family and making as many memories as you can.
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JonFE
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Post by JonFE on Nov 11, 2021 17:31:23 GMT
mikeck I've said it again and again that my heart sinks every time I see this thread bumped and this is another of these occasions Hopefully, your dad gets a positive outcome out of his examination and treatment, since they caught it early and they only assume it has spread... ...and yes, FCUTA
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Post by spacein_vader on Nov 11, 2021 19:25:05 GMT
I hate that this thread exists, I hate that there are posters suffering from this fucking disease or dealing with family members who are (my thoughts are with you all), and I hate that I need to sit here and finally write some words about finding out my dad has cancer. We're all still in limbo about how bad it is, but it's confirmed prostate cancer and whilst they seem to have caught it reasonably early they are waiting to run other tests to see if it has spread. The assumption is that is has spread but they don't know how far. It was only a couple of months ago my 63 year old dad was in great shape and seemed really fit and happy, but already the anxiety, the pain from the biopsy and a groin strain (which we don't know if is related or not) are making him seem older than his years. I fucking hate this disease (I know nobody loves the fucking thing, but it's cathartic to write it down, so I'll say again...fuck cancer). Turns out I didn't know that my grandfather had it too in his 70's, but his was manageable and was not his cause of death years later, so having just turned 40 this year I'll be quickly making sure I get my prostrate checked as regularly as allowed (not that my dad wasn't getting his checked, he was, and his last check a year ago was all clear). From experience the "you have cancer but we don't know how bad" stage is the worst. The not knowing th full extent of it. I hope he/you find out soon and it is survivable. When I was diagnosed I asked to have a genetics referral. It involves some extra biopsy samples and giving them as detailed a family history as possible and they try to calculate if the cancer may be genetic. If they think it may be then your children/grandchildren etc are eligible for more regular screening. Given what you said about your dad and grandad I'd strongly suggest it to him.
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Post by drhcnip on Nov 11, 2021 19:40:07 GMT
things have changed - my wife asked for a genetics referral when she was first diagnosed in 2016 and little interest was shown...she wanted it mainly as her primary was in the kidney and our daughter had kidney trouble as a child...ach, well
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mikeck
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Post by mikeck on Nov 11, 2021 20:27:43 GMT
I hate that this thread exists, I hate that there are posters suffering from this fucking disease or dealing with family members who are (my thoughts are with you all), and I hate that I need to sit here and finally write some words about finding out my dad has cancer. We're all still in limbo about how bad it is, but it's confirmed prostate cancer and whilst they seem to have caught it reasonably early they are waiting to run other tests to see if it has spread. The assumption is that is has spread but they don't know how far. It was only a couple of months ago my 63 year old dad was in great shape and seemed really fit and happy, but already the anxiety, the pain from the biopsy and a groin strain (which we don't know if is related or not) are making him seem older than his years. I fucking hate this disease (I know nobody loves the fucking thing, but it's cathartic to write it down, so I'll say again...fuck cancer). Turns out I didn't know that my grandfather had it too in his 70's, but his was manageable and was not his cause of death years later, so having just turned 40 this year I'll be quickly making sure I get my prostrate checked as regularly as allowed (not that my dad wasn't getting his checked, he was, and his last check a year ago was all clear). From experience the "you have cancer but we don't know how bad" stage is the worst. The not knowing th full extent of it. I hope he/you find out soon and it is survivable. When I was diagnosed I asked to have a genetics referral. It involves some extra biopsy samples and giving them as detailed a family history as possible and they try to calculate if the cancer may be genetic. If they think it may be then your children/grandchildren etc are eligible for more regular screening. Given what you said about your dad and grandad I'd strongly suggest it to him. Yeah, he has been "putting it in a box" between each stage of testing and consultation, and it is clearly messing with his state of mind. We're doing what we can to keep his spirits up, but it's this stage of not knowing the extent of it that is a struggle for everyone. Thanks for the recommendation on the referral, I'll mention that to him.
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mikeck
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Post by mikeck on Nov 12, 2021 14:55:20 GMT
FFS.
He's been waiting for three weeks now to have this specific test to see if it's spread, apparently they make the chemicals up each week and then call the next three people in the queue to come in on one specific day of the week (this sounds fucking archaic, but maybe that's Devon hospitals for you)...turns out for the past two weeks the chemical batch has failed so they haven't been able to test anyone. Meaning he still won't know now until the end of the month. I'm thankful for the NHS I really am, but this seems like such a shoddy process.
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Post by freddiemercurystwin on Nov 12, 2021 15:19:49 GMT
I have little to add to this thread frankly as I have (and still am) dealt with my own family related cancer/health shenanigans and it's too heart-wrenching to read much of this, all I will say is that taking things further and complaining and generally kicking up a fuss and being persistent with that approach can sometimes be beneficial, not always but sometimes and it is very tiring, emotionally and quite daunting too but sometimes it pays off. Obviously you shouldn't have to and some might think being a bit of a Karen is not the right thing to do but otherwise you can just get passed from pillar to post with nobody ever taking any responsibility for anything. Are you able to use the facilities of another hospital, your GP (if they're actually not completely shite and part of the problem) can be really helpful in advising on how best to progress these things.
On a side note, no it's not Devon per se (I'm also in Devon BTW), there is definitely a bit of a postcode lottery when it comes to available treatment/testing, much of the NHS systems are over complicated and antiquated.
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Post by drhcnip on Nov 12, 2021 17:37:04 GMT
FFS. He's been waiting for three weeks now to have this specific test to see if it's spread, apparently they make the chemicals up each week and then call the next three people in the queue to come in on one specific day of the week (this sounds fucking archaic, but maybe that's Devon hospitals for you)...turns out for the past two weeks the chemical batch has failed so they haven't been able to test anyone. Meaning he still won't know now until the end of the month. I'm thankful for the NHS I really am, but this seems like such a shoddy process. cocking hell, that's poor form...but then i have experience of devon hospitals through my in-laws and you may have a point there i hope it gets sorted out, pal - dealing with this fucker is hard enough without having to play the waiting game as well
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Post by Sarfrin on Nov 13, 2021 0:02:25 GMT
FFS. He's been waiting for three weeks now to have this specific test to see if it's spread, apparently they make the chemicals up each week and then call the next three people in the queue to come in on one specific day of the week (this sounds fucking archaic, but maybe that's Devon hospitals for you)...turns out for the past two weeks the chemical batch has failed so they haven't been able to test anyone. Meaning he still won't know now until the end of the month. I'm thankful for the NHS I really am, but this seems like such a shoddy process. Fucking hell. So frustrating.
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