F*** You, Cancer! Catch all

So, more info now that life is calmer.

We have community health clinics up here in Quebec that are 100% free. (Well, not free, we pay for them with our taxes, but that's it.) Given my dad's situation (terminal stage 4 colon cancer) he was placed with one of their family doctors there that specializes in end-of-life/palliative care.

She looked at his files. ALL OF HIS FILES for the past 2 1/2 years since his cancer diagnosis. Looked at all his labs, scans, blood results, notes from his 2 stays in the hospital. Everything. She then met with my dad and his wife for almost 2 hours and laid things out.

Because of how weak he is, it is unlikely he will ever get strong enough/healthy enough to tolerate chemotherapy without weakening him so much that he will end up back in the hospital with a severe infection.

My dad asked for a couple of weeks to let her know so she can make plans and the care he will need. After almost 2 weeks of discussion between him and his wife, he made the decision to go for quality of remaining life over quantity remaining.

I visited him today and we discussed it. Really, truly discussed it, and he is content with his decision. No regrets, no second thoughts. And, to be honest, that doesn't surprise me. He is not the kind of person who wants to be in the hospital not able to do anything. He wants to be in his own house, his own room, in his own stuff. Eating good food, not hospital food.

Interestingly enough, he is also looking at CBD oil for pain management. He doesn't want to use morphine (even though he has a prescription), because it really knocks him for a loop, and his Dr suggested he try it.

He will be talking to the Dr about the process for Medical Assistance in Dying, which is permitted up here in Canada. He is not there yet, but he wants to know the process.

He is also looking into a place we have in the city called La Maison Mathieu Froment-Savoie, which specializes in end-of-life care. And in this case, end-of-life means you have a couple of weeks left. The average length of over the past year was 15-20 days.

For the longest time, I have been able to ignore the ticking of the clock. Chemo, radiation therapy, surgery have all drowned it out or masked it.

No more masking.

Tik tok tik tok.

And I truly appreciate the kind words and thoughts. I truly do.

And for those who are reading, and don't know what to say...do not feel bad or guilty about your silence. And this is not me being patronizing. I know this community. I know the people. I know there is care and concern from everyone, and I think I speak for everyone posting in this thread when I say we appreciate and feel the support. It means more than you could ever know.

Goodjers are your friends you can sit around a campfire with, not say anything, and just know they understand.

Just wanted to let you know I'm at your campfire, mudbunny.

I know from the cancer groups I'm in that many people find CBD to be a pain reducer. If he has bone pain, there's another trick - Loratidine (yes, an antihistamine) can be very effective. Ask your doctor but it's commonly used among end-stage prostate cancer patients here in the US. There may be also be side effects he should aware of (like peripheral neuropathy) so a doctor should be involved.

Thanks. I’ll pass it on.

Echo the thoughts on the CBD oil. Not from personal experience but through my mom who chose to pass the same way your dad is.

I think from my experience, asking his care team about a wound specialist would be beneficial. I don't recall how it happens, whether it is sores that develop or whatever. Getting the right person to bandage and change them out will lead to more comfort for your dad.

Also be prepared for uncharacteristic mood swings and nonsensical rambles either from the disease or from the pain meds. These can be very traumatic and taxing mentally. So covering for each other and having outlets is important. I don't know what kind of relationship you have with your dad's wife but any support you offer helps.

For reference, I live 400 miles from my parents. I tried to visit a few times during what ended up to be my mom's last month. I slept underneath my parents bedroom and I heard my dad, completely broken, say "why don't you just die already?" during one of her out of character episodes. The thought of him having to deal with that alone for an extended period of time when she was having her "good days and bad days" is chilling.

Another example is lifting my mom back into bed after she soiled herself. Hate f*ck cancer.

Mudbunny, I know this is cold comfort, but if it is any consolation whatsoever, I am happy that your father is getting what my closest friend did not: the opportunity to choose.

I know that oncologists are supposed to try to keep patients' spirits up because attitude does make a difference in prognosis, but Michael's oncologist was unrealistically optimistic for too long, to the point where by the time it became apparent that his time was running out, he had at best two weeks (he made it one and a half), and wasn't given the opportunity to manage his remaining time by choice.

I don't really have any comfort to give other than that -- your father has the opportunity to make the most of this time and handle it the way he chooses, and while that's painful and hard for all of you, it's also a gift the value of which you don't realize unless you don't get it.

You and your father and your loved ones have my sincerest hopes for being able to make the most of the time you have. f*ck cancer to eternity and back.

I talked to my dad a little bit to get some clarification on morphine/opiates and CBD oil with regards to my mom.

I don't know where colon cancer ranks on the pain scale, but my dad was clear that CBD can make you more comfortable on certain things. It is not a replacement for drugs like fentanyl (sp?) which, while currently abused for all kinds of things, was designed for cancer pain.

Also, my wife lost her mother to liver cancer several years ago. And it still pains her to this day that once in hospice, there is no advisement on how much morphine was safe to be given. It was just administered as needed to alleviate pain. (note that her mother was poor and did not have health insurance) Her mother did not want to take morphine and while my wife was out of the room, her grandmother gave her mom the pill and her mom didn't wake up.

So since your father already has issues with taking morphine, I feel like discussions should be had about when and how much should be had. I think it would be nice to know when/if he needs to take it. And when/if he gets to a certain dosage, the risks of not waking are known.

fangblackbone wrote:

Echo the thoughts on the CBD oil. Not from personal experience but through my mom who chose to pass the same way your dad is.

I think from my experience, asking his care team about a wound specialist would be beneficial. I don't recall how it happens, whether it is sores that develop or whatever. Getting the right person to bandage and change them out will lead to more comfort for your dad.

Thanks. While I complain about taxes (I pay close to 45% in taxes), one of the things it provides is in-home nursing care for my dad. He has a nurse that comes twice a week to change his colostomy bag and check the hole as well as to check everything else as required. He also, because he is considered in the terminal phase of his cancer, a 24-hour on call nurse if needed. He has already had some issues with bed sores because of him being in the hospital for 7 weeks earlier in the spring.

Also be prepared for uncharacteristic mood swings and nonsensical rambles either from the disease or from the pain meds. These can be very traumatic and taxing mentally. So covering for each other and having outlets is important. I don't know what kind of relationship you have with your dad's wife but any support you offer helps.

Thanks. I will talk to her make sure she takes advantage and asks for a place she can call to get support.

For reference, I live 400 miles from my parents. I tried to visit a few times during what ended up to be my mom's last month. I slept underneath my parents bedroom and I heard my dad, completely broken, say "why don't you just die already?" during one of her out of character episodes. The thought of him having to deal with that alone for an extended period of time when she was having her "good days and bad days" is chilling.

When my dad was in the hospital, he swung back and forth twice between great health to "you probably shouldn't leave town in the next day or so" and back to health. My brother and I joked "PICK ONE DAMMIT!!" to each other. Because if you can't joke with your brother about your father (almost) dying, who can you joke with? My mother-in-law also went through it with her mother.

Farscry wrote:

Mudbunny, I know this is cold comfort, but if it is any consolation whatsoever, I am happy that your father is getting what my closest friend did not: the opportunity to choose.

nods

His attitude at the beginning was was "Imma fight this all the way". But now, after seeing him in the hospital for close to 4 out of the past 10 months and what it did to him, I can see that he has made peace with his situation. It's a shitty situation, but sometimes life is shitty, and you deal with the situation you are in, not the one you wish you were in.

I know that oncologists are supposed to try to keep patients' spirits up because attitude does make a difference in prognosis, but Michael's oncologist was unrealistically optimistic for too long, to the point where by the time it became apparent that his time was running out, he had at best two weeks (he made it one and a half), and wasn't given the opportunity to manage his remaining time by choice.

My dad will be thanking his oncologist this week or next for her help, but letting her know he won't be needing her services anymore. She was always honest with him, as well as with me when I went with them to ask questions.

I don't really have any comfort to give other than that -- your father has the opportunity to make the most of this time and handle it the way he chooses, and while that's painful and hard for all of you, it's also a gift the value of which you don't realize unless you don't get it.

You and your father and your loved ones have my sincerest hopes for being able to make the most of the time you have. f*ck cancer to eternity and back.

Thanks. The path has been slow enough that we have all had a chance to accept it is coming. I am not sure whether that is worse or not than something hitting you right outta nowhere. I suspect each is shitty and good in their own specific way, and not one of those things that can be easily compared.

fangblackbone wrote:

I talked to my dad a little bit to get some clarification on morphine/opiates and CBD oil with regards to my mom.

I don't know where colon cancer ranks on the pain scale, but my dad was clear that CBD can make you more comfortable on certain things. It is not a replacement for drugs like fentanyl (sp?) which, while currently abused for all kinds of things, was designed for cancer pain.

Thanks. This was recommended by the Dr (like I said, it is legal up here), and the people at the SQDC (Quebec cannabis store) knew their stuff. I joked he should reach out to my brother who, as a ski patroller at Whistler, probably has some real, real good access.

Also, my wife lost her mother to liver cancer several years ago. And it still pains her to this day that once in hospice, there is no advisement on how much morphine was safe to be given. It was just administered as needed to alleviate pain. (note that her mother was poor and did not have health insurance) Her mother did not want to take morphine and while my wife was out of the room, her grandmother gave her mom the pill and her mom didn't wake up.

The place where we hope to send him when it is time has a team that is trained in all of this, so hopefully it doesn't come to that.

So since your father already has issues with taking morphine, I feel like discussions should be had about when and how much should be had. I think it would be nice to know when/if he needs to take it. And when/if he gets to a certain dosage, the risks of not waking are known.

Thanks. I will make sure it is on his list of things to discuss.

Edit the first: One other thing. If anyone has any questions or needs to vent, my PMs are open.

Knowing people support you, and having someone there to listen is incredibly useful.

Edit the second - My dad, for the first time in about 4 months, went out for lunch with his wife over the weekend. (Note, FB link for those who don't want to go there.)

Change in circumstances.

Since Saturday (yesterday), he has been having lots of pain in his legs, despite dilaudid every 3 hours. They weren’t having any impact on the pain, so his wife called the 24-hour doctor on his case, who sent out a nurse.

The nurse showed up with a syringe (morphine) and there is also a prescription waiting at the pharmacy for more syringes for the pain management.

I am so sorry to hear that mb.
We are here. We are listening and sending love.

Okay, quarterly update for me. I am one year, 9 months into treatment. My PSA remains at undetectable. But this time... There's a surprise.

Prostate cancer cells initially feed on testosterone, so the point of Androgen Deprivation Therapy is to prevent the production of testosterone in the body and to also prevent its uptake by the cells. The target number is at or below 50ng/dl, while a number of 20ng/dl or less suggests (statistically) the longest time till the ADT drugs stop working and a new approach must be taken. (This is referred to as moving from "castrate sensitive", meaning that the "chemical castration" is effective, to "castrate resistant", where the cancer cells begin to feed (albeit less efficiently) on other chemicals. You want the period between initiation of treatment and CR status to be as loooong as possible.)

My testosterone quickly dropped from normal down to 35, but it always bugged me that it hung out there for over a year. I mean, why not less than 20? I dunno. Doc thinks it was because I'm younger than many and so make more testosterone. But this time around? Suddenly, it's 12ng/dl. 12! Holy carp! Just when you think you can't get any more lucky...

As usual, thanks for the all the support, folks. I don't know what I'd do without you all.

That's just another example how its criminal that we don't talk about cancer enough.
I mean how would anyone discover any of that Robear? And with it out in the open, people won't feel so isolated...

I know. When I was diagnosed, I was handed some literature from the Prostate Cancer Foundation, and on checking them out, I discovered they have closed Facebook discussion pages for people in various stages. From there, there's a ton of study and discussion that goes, but even within the groups, it's obvious that some people are ashamed of having a disease that they perceive as related to their masculinity. They often get a bit upset when people discuss topics like sex or the workings of the drugs.

The long-term effects of not having this information easily available is that some men die because they don't want to lose their testosterone (through whichever treatments are available). I can't imagine having my self-image be so tied to big muscles or the ability to have penetrative sex or the lack of body hair. But people will come in and say "My husband refused treatment and now six months later he's in terrible pain, the cancer is all over, and are there any good diets or alternative treatments that he can take that will heal him?" I think of this as the Steve Jobs effect. If you don't follow the advice of good doctors, if you have incompetent docs (it's easy to get a consult with a nationally known place like Mayo Clinic, turns out) or if you think rubbing CBD and almond oil on the painful spots will heal you as long as you go Vegan, well, you're gonna die sooner rather than later. Just like Steve Jobs.

If you get cancer, find a good doctor who can describe to you the basis for your disease and the most up to date treatments (rather than just "I've been doing this treatment for a decade and it's great!" - Sorry, that doctor is at least 3 generations behind the standard...). Then follow their advice. Eat well and enjoyably to keep healthy; diet won't heal your cancer but it will keep you from keeling over from some other heart or organ-related issues. Exercise to some extent every day; fatigue is part of the deal but it will help with that as well as keep you in good shape and your heart strong. And just as important, if not more: live every day mindfully, finding joy in the small things, even when you are not happy, or you are sick and feeling down. A good cup of ice water is a fantastic experience, as is your favorite food (or even drink, occasionally). A talk with a friend, snuggle time with pets, the sun through the window on your plants, a great win at work, whatever. These are all markers of the extended game time you've earned through your treatment, and man, it's amazing! Keep your attitude up - of course, you're going to live another 20 years on the treatement! - and deal with the effects, side or otherwise, as they come.

Cancer is not punishment from a god. It's a phase of life. We all hope that that phase - long term acute illness - comes late and is treatable. Sometimes it's not, it comes early, we've lost friends to it far too soon here. But if you find yourself there, remember, there are usually very good treatments, and in the end, there is hospice, which gives us an easier path out when the time comes.

And up until that point, life is good. I'm not gonna die today, and not tomorrow either. And so for me, two really bad days are the worst I can expect. Everything else is just inconvenient, because even if I wake up in pain and disability, I'm waking up. And that's just another stage of life. Joy is everywhere around us and finding it is, well, a joy all its own.

Not only that, but many cancers are fast growing/acting so the earlier you can get a treated the better. But this means that when someone gets a diagnosis they are bombarded in information and asked a TON of questions about their treatment. Which overwhelms many people, so they might not be getting the best treatment for them as they just don't have the time to process everything. I really wish everyone had the ability to at least get an overview of "probable" diseases in the next few years so they could get some info, but I know that has massive issues as many people don't understand what probable means.

Anyway, great news Robear.

The whole speech is great but Robear reminded me of the 3 things Jimmy Valvano said you should do every day.

About 2:30 to 3:05 in the video:

I was watching a video by Doctor Mike the other day where he was interviewing another youtuber that was fighting testicular cancer. Having gone through that myself, there was so many questions that were brought up in the video that while Doctor Mike gave great answers too, he didn't stand from a position of personal experience. Things like making a choice to do chemo vs surveillance.

I feel like when someone is diagnosed with any kind of invasive disease (cancer, Parkinson's, etc...) there should be resources where people who have or had that disease can sit down and just give testimony and answer questions. It isn't a substitute for a doctor, but hearing what choices others made with similar conditions and why they made it can be helpful. I remember spending the first few weeks just watching video after video of people talking about what they were going through, but being a one way medium I couldn't ask questions to expand on areas I was concerned about.

That's what the FB groups are for, Kazar. People ask questions as they learn, and then over time, they start answering questions for the new batches of people who come in. It's a great way not just to inform, but to reduce fear, for most people. It also lets you feel like you are helping others, which, honestly, is a great way to feel about the situation. "Sure, I have cancer, and it's bad, but I can help others not fear treatment so much, and there are people who are worse off than I am, and some who are better, and we are all in this together." Giving hope to other people when they need it, that's the best of all.

Laughing , thinking and crying are beautiful things and a wonderful mantra.

I had a good cry on mother's day. I told my wife we have a new tradition to honor our mothers who are no longer with us on mother's day. It is to watch episode 6 of Sandman. "On her wings" or something to that effect. It centers around death and the incredibly talented actress playing her, and Hob, the man who will never die and never give up on life. Looking at the death parts, they can be tragic and brutal but in the big picture downright tears worthy beautiful.

I am considering writing Neil Gaiman and thanking him for the gift of all those moments in that episode.

Robear wrote:

That's what the FB groups are for, Kazar. People ask questions as they learn, and then over time, they start answering questions for the new batches of people who come in. It's a great way not just to inform, but to reduce fear, for most people. It also lets you feel like you are helping others, which, honestly, is a great way to feel about the situation. "Sure, I have cancer, and it's bad, but I can help others not fear treatment so much, and there are people who are worse off than I am, and some who are better, and we are all in this together." Giving hope to other people when they need it, that's the best of all.

FB might work for some but there is a reason why things like group therapy works best in person. If anything a FB group is there because we are missing a crucial part of healthcare which is mental health.

I don't think I'd do as well in an in-person group as I do online, for a lot of reasons that are probably not appropriate to discuss here. Mental health is a topic I'm intimately familiar with on a daily level.

fangblackbone wrote:

That's just another example how its criminal that we don't talk about cancer enough.
I mean how would anyone discover any of that Robear? And with it out in the open, people won't feel so isolated...

And that's why I am sharing my journey of my father's cancer.

Similar journey, but a different point of view.

Stele wrote:

The whole speech is great but Robear reminded me of the 3 things Jimmy Valvano said you should do every day.

About 2:30 to 3:05 in the video:

I admired his humor when he mentioned the guy to the side letting him know that his "time was almost up" or something related to the production time allotted, and he kind of made a noise and pretended to gesture to the guy, pretty much telling him to f*ck off.

The one thing I've learned is that every cancer is different, and every person's experience of their cancer(s) is also unique. Combine that with everyone having a unique approach to life and you end up with high level commonalities - treatment modalities, attitude towards life and death, mental state (fear, hope, etc), quality of life, and things that affect those - as being the only things that affect more than just the individual. No one can say "I took this particular treatment in this way for X months, so that's what you should do", but every can say "look, you have to get past your fear if you want your body to help you fight it", that sort of thing. And learn. Learn all you can. Challenge your doctors to explain things. They (should) love that.

But I've learned things about myself that I took for granted are not necessarily representative of everyone else.

Got into a bit of an argument with my dad today.

Full disclosure, my dad is (and has been) an alcoholic for probably most of the last 50 years at least. Popping open a can of beer when he wakes up at 7 in the morning alcoholic. Combination of upbringing and military culture. As a result of chemo and his cancer, he also has some serious kidney problems. He asked me to bring him a 24 of beer (that will last him about a week) and I refused.

I don't know if he realizes the position he is putting me in. Every Dr he has seen has been very clear: Alcohol, be it beer, wine or hard liquor, is not good when you have cancer, and with his kidney problems it makes it even worse. One one hand, he is terminal, that has been made very clear by his oncologist, and he has the right to enjoy his life (however much of it is left). On the other hand, he is asking me to provide him with something that is going to accelerate his death.

Normally I am pretty good at monkeysphere stuff and not going "woe is me" when my dad is having it way, way worse. But this? This is hard.

I wish I had something more helpful to say than, sorry to hear that, friend. I think I speak for gwj in general when we say we hope for the best and that we support you.

I wish I had come back to the site and this thread had been fallow. I am so sorry to hear what you're all going through.

I have to join this thread now myself, though. It's not me. It's my younger son. He has some sort of brain cancer. We're supposed to get some more specific information on Wednesday, but for now it's all just that we know it's there and it's in a nasty place.

Spoiler:

I've mentioned him as being my gray hair generator. He moved in with me about a year ago with his 8 year old daughter. There is an entire giant thread there too. He's a journeyman mason now and was on the job and suddenly collapsed. They took him to the hospital and they found a mass in between his hemispheres that's right up against his vagal nerve. He got dehydrated working in the heat and that caused the mass to squish the nerve and cause him to faint. His work is working with him, but he's already had it happen again on site. And the meds they gave him to help minimize issues are making him pretty sick.

He got hooked up with a neuro-oncologist immediately, and they made an appointment with him and a neurosurgeon for two weeks later a.k.a. this next Wednesday (THAT fast!? was my response). I'll be going with him and hopefully getting the long pseudo-Latin words I need to know what's going on and we'll hopefully have some idea of what treatments are possible.

We were in the process of a fairly complicated family court situation anyways trying to get things settled out about his daughter, but now we have to add making me her official legal guardian to it.

I'm just trying not to drive myself insane until after Wednesday and getting the course correction in to the courts and dealing with my HCA license mess and the pottery studio and my elder son taking over the homestead back home and his baby on the way I'm just going to have to put on my Vulcan face and deal for a while again. With my health I can't be quite so much of a caffeinated lifeform anymore, but I'll figure it out I guess.

So sorry to hear that, Momgamer. We are here if you need to vent, or just chat about things as they move along.

momgamer, get help/outlets. I say this because your story has always been doing whatever it takes on your own. Please, for us and your family at least, do not do this on your own. You know the stories where the caregiver dies or severely ages prematurely while caregiving. I worry that since you are so capable, that will be you.
I will hold out hope that they will be able to address your son's cancer quickly and as painlessly as possible.

The oncology practice will give all sorts of information on support groups and programs, both national and local, financial, health and social. If they don't, ask to talk to their patient advocate.

We are moving my dad to a palliative care residence tomorrow. I dropped by to see him tonight, and he is very confused. He knows who I am, but he doesn't know when he is. He was jumping between his time as a young soldier needing to clean up his barracks and put things away in his footlocker, to various other times in his life.