I have read a full description (at least that which you've shared in your blog) of your education and professional experience and did not see any mention of your ever taking any biomedical courses. Therefore I (a neuroanatomy major in grad school) was dubious about your actually having read a neurology text. Aha! Your photo gave you away. It seems highly likely to me that you got that little dog to read and to explain it to you.
Truly, I'm sorry that you too have cancer. Wouldn't wish it on my worst enemy if I had one. But a sense of humor stands a cancer patient in very good stead and thus you are well equipped to do the best possible.
I'm in awe of your positivity and humour Ragged, just amazing. And thank you for explaining this all so clearly, I actually had no idea about all the different stages and what those scary words meant. It's so much better for everyone that they're demystified, and that we talk about death more openly. I mean we're all going to get one. I just wondered about the phantom smells - how did you know this was a symptom, and what is that, just one of the brain's freak outs?
Oh really wow! And thank you for the link - I’ll take a look. I think bringing them over here is a great idea. What about a separate section within your existing blog? I’ve just wonder (for myself too) whether a separate stack would be complex to manage 🤔
I had the phantom smells for a couple of years before I went to the doctor. They didn't bother me that much because they were always nice smells. Besides it was COVID time and they said “Don't go to the doctor unless it's serious.” but then I had a horrid smell that lasted a few days so I went to the doctor.
The doctor said “I have no idea what could cause that.”
I said “The internet says it’s either diabetes or a brain tumour.”
She said “Well let’s test for diabetes first” and booked me in for a blood test.
But then she called me as I was walking home.
“I just talked to my colleague and he said you should have an MRI. I’ve booked you in for Monday.”
A couple of hours after the MRI she called me at the pub and said “I’m sorry Mr Clown but you have a brain tumour.”
Oh my word. Utterly devastating. I’m so sorry. The way you write about this is utterly compelling though, I hope it helps. And I look forward to reading more 😊
I’ve had a WordPress blog for many years. My idea when I came to Substack was to write about philosophy and culture here and personal stuff over there (*). I have a bunch of posts about my cancer story over there if you are interested.
(*) I started writing my memoirs over there but I get practically no readers (+) so I might just move them over here too. I thought about starting a separate Substack for those.
Thank you for this, my son has a stage 4 glioma, I’ve done ALOT of reading myself but found this really helpful and interesting. He is currently on a trial, he’s on temo, robociclib and topetecan, scan in a couple of weeks so everything is crossed that we’ve made a dent in the bugger, or at least stopped the growth for a while
Firm believer in prepaid funerals with fully documented instructions, and a paid up plot (for those wanting an actual spot), it's a gift for for those left to deal with our departure, and saves writing out lots of complicated instructions!
Ah, I have a special book with all of my non binding thoughts about lots of things (possessions and such), including songs, of which I can cross things out if I change my mind.
I'm not sure what country you're in. Here, a lot of people take out funeral insurance, which is okay, it means no one has to find a big sum of money, but we also have prepaid, which I thought was preferable financially. I paid in today's dollars, of course, and if I go in 20 years time, all costs are fully covered in those future dollars. Twenty years of insurance would cost far more than a funeral. That was my logic. Plus the prepaid is with my selected service provider, so no one has to get quotes or make decisions. I didn't set out to do this, but when I started looking into it, the challenges and price differences blew my little mind. People make these major and confusing decisions at short notice every day. I was struck by how difficult that is for people in distress. Now I give it no thought, great for peace of mind.
Sounds very smart, Caz. One reason I haven't done that myself is that we tend to get bored in a place and move on quickly (I am up to about 30 towns and cities already) so picking a funeral provider might not be helpful.
If we stay here though (Bristol, England), Divine Ceremony has a fixed fee which is very affordable. She also allows for a funeral to be a happy affair and will help to find the right person to guide the service if you want a poet or a comedian or whatever. And she has a big white hearse.
Like you, I’ve chosen a bunch of options that they can overrule if they want (my wife hates the cemetery) but probably won't because it will be too much trouble. They won’t change the music list though because that’s me! They’ll complain and they’ll cry, but they won't change it.
Do'h! Indeed, you have been fortunate to have lived in many places. I'm an idiot, I forgot.
Easier to lock things in for people who know they're staying put. As for interment, I was lucky to have childhood and immediate family connections, two lovely trees and a garden bench already in place. I was ridiculously happy to find there were still vacancies. 😂
If I didn't have a dark sense of humour I honestly don't know where I'd be. I gotta laugh at stuff 😅 but thank you for your Google deep dive. I appreciate it and I'm sure so many others do as well
I wanna saaay high five but my heart wouldn't be in it 🙃 radiotherapy scan tomorrow. Gonna push back the invader and probably loose some more hair... Fantastic right? 🫤 Ah well... Just gotta space out my meds and make sure I've bloody eaten something. An hour and a half between anti🤢 and the chemo bois
Thanks I was back on it today. Blood test and then a lovely head scan. Really makes you feel for hannibal lectar having his face enclosed like that 😅 so that tired me out somewhat. Off to sleep now though
I was obsessed at the start. I was reading for hours a night for months on end. I'm relaxed about it now and I thought someone else who is just starting out might be interested to learn.
I cannot even imagine. I get stuck in doom loops of worry sometimes, on even trivial things. I’m so impressed how you’ve allowed this to become part of your life, but not, it seems from the outside anyway, to take over your life.
I hope you've got a long time left on planet Earth, Ragged. Have you ever tried anything far out like a Healer? Do you think the brain tumour could have anything to do with working on submarines? My father used to be in the Navy when ships were full of asbestos (to stop fire spreading of course, before they knew about asbestosis) and he had some lesions on his lungs as a result.
I have read a full description (at least that which you've shared in your blog) of your education and professional experience and did not see any mention of your ever taking any biomedical courses. Therefore I (a neuroanatomy major in grad school) was dubious about your actually having read a neurology text. Aha! Your photo gave you away. It seems highly likely to me that you got that little dog to read and to explain it to you.
Truly, I'm sorry that you too have cancer. Wouldn't wish it on my worst enemy if I had one. But a sense of humor stands a cancer patient in very good stead and thus you are well equipped to do the best possible.
Cheers!
We can laugh together, Norma Jean!
I'm in awe of your positivity and humour Ragged, just amazing. And thank you for explaining this all so clearly, I actually had no idea about all the different stages and what those scary words meant. It's so much better for everyone that they're demystified, and that we talk about death more openly. I mean we're all going to get one. I just wondered about the phantom smells - how did you know this was a symptom, and what is that, just one of the brain's freak outs?
Oh really wow! And thank you for the link - I’ll take a look. I think bringing them over here is a great idea. What about a separate section within your existing blog? I’ve just wonder (for myself too) whether a separate stack would be complex to manage 🤔
I actually created a separate section (”Scattered Memories”) but I haven't posted anything there yet. But I still have 3 followers!!
I had the phantom smells for a couple of years before I went to the doctor. They didn't bother me that much because they were always nice smells. Besides it was COVID time and they said “Don't go to the doctor unless it's serious.” but then I had a horrid smell that lasted a few days so I went to the doctor.
The doctor said “I have no idea what could cause that.”
I said “The internet says it’s either diabetes or a brain tumour.”
She said “Well let’s test for diabetes first” and booked me in for a blood test.
But then she called me as I was walking home.
“I just talked to my colleague and he said you should have an MRI. I’ve booked you in for Monday.”
A couple of hours after the MRI she called me at the pub and said “I’m sorry Mr Clown but you have a brain tumour.”
Oh my word. Utterly devastating. I’m so sorry. The way you write about this is utterly compelling though, I hope it helps. And I look forward to reading more 😊
Thank you! You are very kind!
I’ve had a WordPress blog for many years. My idea when I came to Substack was to write about philosophy and culture here and personal stuff over there (*). I have a bunch of posts about my cancer story over there if you are interested.
https://www.raggedclown.com/tag/cancer/page/2/
(*) I started writing my memoirs over there but I get practically no readers (+) so I might just move them over here too. I thought about starting a separate Substack for those.
(+) I had one post go viral though!
https://www.raggedclown.com/2021/08/06/stuff-that-i-have-done-that-you-have-not-probably/
Thank you for this, my son has a stage 4 glioma, I’ve done ALOT of reading myself but found this really helpful and interesting. He is currently on a trial, he’s on temo, robociclib and topetecan, scan in a couple of weeks so everything is crossed that we’ve made a dent in the bugger, or at least stopped the growth for a while
Good luck to your son, Anna. I hope his bugger stays dented.
And yeah, the like isn't in support of brain tumors. 😬
Firm believer in prepaid funerals with fully documented instructions, and a paid up plot (for those wanting an actual spot), it's a gift for for those left to deal with our departure, and saves writing out lots of complicated instructions!
It's not creepy. It's a kindness to our families.
I have everything sorted with the funeral director. She even made me choose the playlist for music!
I didn't pay for it yet, but that’s a good idea!
Ah, I have a special book with all of my non binding thoughts about lots of things (possessions and such), including songs, of which I can cross things out if I change my mind.
I'm not sure what country you're in. Here, a lot of people take out funeral insurance, which is okay, it means no one has to find a big sum of money, but we also have prepaid, which I thought was preferable financially. I paid in today's dollars, of course, and if I go in 20 years time, all costs are fully covered in those future dollars. Twenty years of insurance would cost far more than a funeral. That was my logic. Plus the prepaid is with my selected service provider, so no one has to get quotes or make decisions. I didn't set out to do this, but when I started looking into it, the challenges and price differences blew my little mind. People make these major and confusing decisions at short notice every day. I was struck by how difficult that is for people in distress. Now I give it no thought, great for peace of mind.
Sounds very smart, Caz. One reason I haven't done that myself is that we tend to get bored in a place and move on quickly (I am up to about 30 towns and cities already) so picking a funeral provider might not be helpful.
If we stay here though (Bristol, England), Divine Ceremony has a fixed fee which is very affordable. She also allows for a funeral to be a happy affair and will help to find the right person to guide the service if you want a poet or a comedian or whatever. And she has a big white hearse.
Like you, I’ve chosen a bunch of options that they can overrule if they want (my wife hates the cemetery) but probably won't because it will be too much trouble. They won’t change the music list though because that’s me! They’ll complain and they’ll cry, but they won't change it.
Do'h! Indeed, you have been fortunate to have lived in many places. I'm an idiot, I forgot.
Easier to lock things in for people who know they're staying put. As for interment, I was lucky to have childhood and immediate family connections, two lovely trees and a garden bench already in place. I was ridiculously happy to find there were still vacancies. 😂
If I didn't have a dark sense of humour I honestly don't know where I'd be. I gotta laugh at stuff 😅 but thank you for your Google deep dive. I appreciate it and I'm sure so many others do as well
I see that you are in the same club, Rachel. Good times, eh?
I wanna saaay high five but my heart wouldn't be in it 🙃 radiotherapy scan tomorrow. Gonna push back the invader and probably loose some more hair... Fantastic right? 🫤 Ah well... Just gotta space out my meds and make sure I've bloody eaten something. An hour and a half between anti🤢 and the chemo bois
I’m on round 4 of chemo. I feel like I just got off a spinny-round fairground ride.
Good luck with your radiotherapy!
Thanks I was back on it today. Blood test and then a lovely head scan. Really makes you feel for hannibal lectar having his face enclosed like that 😅 so that tired me out somewhat. Off to sleep now though
I hope you sleep well!
Laughter is the best medicine!
Annoying you had to learn all this Ragged.
I was obsessed at the start. I was reading for hours a night for months on end. I'm relaxed about it now and I thought someone else who is just starting out might be interested to learn.
I cannot even imagine. I get stuck in doom loops of worry sometimes, on even trivial things. I’m so impressed how you’ve allowed this to become part of your life, but not, it seems from the outside anyway, to take over your life.
I hope you've got a long time left on planet Earth, Ragged. Have you ever tried anything far out like a Healer? Do you think the brain tumour could have anything to do with working on submarines? My father used to be in the Navy when ships were full of asbestos (to stop fire spreading of course, before they knew about asbestosis) and he had some lesions on his lungs as a result.
I hope I have a long time too, Bettina! I like it here!
The only known cause of gliomas is radiation. It's possible that living on a nuclear submarine had something to do with it!
I clicked "like" without thinking. Obviously it was meant as a small gesture of support.
Thank you, Malcolm. That's the way I took it. Gestures of support are great!