Mrs PDR worked out this evening that even though CTCL is not a death sentence, it is a life sentence. It has been a long evening. Thankfully, I was a page or two ahead in the manual, so I have been sort of waiting for this realization to sink in.
There is a scientist in Canada, currently dying of ovarian cancer, who has captured interest around the world by documenting her final months on twitter. People are praising her beauty, strength, joy, etc. And I'm caught up in it too - I check her twitter feed regularly. But I also worry that this is setting the bar extremely high for regular folk who just don't have it in them to be this gracious and open about their final days, and should not be expected to do so. It seems that the process of approaching one's demise is likely a lot messier than portrayed. I waver between inspired and angry when I read her posts. Cancer sucks.
I've not seen the feed (would like to, I think), but yes, the two deaths-from-cancer I've watched have been... not exactly twitter-food. Would you mind pointing me to the feed?
I was actually here on Ship some four years ago trying to find something, anything, that would give me an idea of what my sister's upcoming dying process would be like. Didn't find anything, though.
Mr. Image has home health care once a week. Today just before his health care nurse arrived he became very dizzy and was seeing things strangely. It turns out his pulse was very low no doubt from his blood pressure pills she said, so no more of those. Of course, now his blood pressure which is already high will most likely go even higher. Enough already. Cancer at this point is giving him the least grief. This is the second time his treatment for something has made things worse. The good news is the nurse arrived by chance at the best of times, and he is also moving better thanks to a weekly visit that includes movement exercises. So hopefully we can delay a wheelchair.
There is a scientist in Canada, currently dying of ovarian cancer, who has captured interest around the world by documenting her final months on twitter. People are praising her beauty, strength, joy, etc. And I'm caught up in it too - I check her twitter feed regularly. But I also worry that this is setting the bar extremely high for regular folk who just don't have it in them to be this gracious and open about their final days, and should not be expected to do so. It seems that the process of approaching one's demise is likely a lot messier than portrayed. I waver between inspired and angry when I read her posts. Cancer sucks.
I have been following.
Nadia weaves grace and beauty and hope from the roughest of threads. She is raising money for young scientists by walking on her palliative care ward, which is all she can do, and gaining meaning from all the moments of her life that she is able to hold.
I don’t think this sets a bar for others who are dying - whose journeys may be easier or harder - but it does challenge those who are not.
There is a scientist in Canada, currently dying of ovarian cancer, who has captured interest around the world by documenting her final months on twitter. People are praising her beauty, strength, joy, etc. And I'm caught up in it too - I check her twitter feed regularly. But I also worry that this is setting the bar extremely high for regular folk who just don't have it in them to be this gracious and open about their final days, and should not be expected to do so. It seems that the process of approaching one's demise is likely a lot messier than portrayed. I waver between inspired and angry when I read her posts. Cancer sucks.
I think I see what you mean now. My DAILY life is nothing like this, and I'm in decent health.
I was looking for stuff like "what is it like to change the stuff around a stoma, and where do you get supplies, and how do you know (guess) how much time is left (months, days, hours) and what is terminal restlessness if it happens, and what exactly should you say/do/not say/not do to be a blessing and not a curse to the person who's going through all this? Especially that last bit. Because I don't know by experience what it is to live with the knowledge that I won't be here next year, even though that may be the case. But it seems to me a heavy burden, and one I wouldn't want to increase. And it would have been good also to know how other people typically react, and if/when it would be helpful to, er, talk to them or even shoo them away when they are making pests of themselves. Because there was some of that in my sister's last days (in Rossweisse's too) and though you never want to take anybody's agency away, towards the end there were hours and days when the person I loved could NOT really respond herself (drugs, etc.) to behavior that seemed to me pestilential. Though it wasn't clear at points whether she was willingly tolerating the behavior for the sake of the relative, or whether she just couldn't muster up the energy to tell them to fuck off.
Forgive me. This is maybe not the right place to discuss stuff from this perspective, that of an onlooker. But I do wish I had done things better.
@Cameron yes indeed. I am mightily inspired and have contributed $ to the cause as well. I do hope you're right, that it doesn't set the bar too high for others in her position. That's my worry. I feel protective of folks who might compare themselves and how they're navigating the process. And perhaps my anger is self-directed, knowing that it is extremely unlikely I would ever be like her.
@Lamb Chopped yeah, none of those nitty=gritty details. I can see how that would be helpful to read, too, if someone's up for documenting it. When I went through my cancer surgery I joined a message board for those with the same cancer and it was very helpful to hear from other people about what they were experiencing, in full, messy detail.
So I'm back from the doctors. My platelet count was a little low so nothing but another blood test happens next week. Then after that I start 12 weeks of weekly doses of Taxol. The doctor says there won't be any side effects, and that my hair will grow back!
@Lamb Chopped we were told what to expect with Dad. We were told he would seem the same for several weeks, and then something would happen, such as his kidneys becoming overwhelmed (a cytokine storm), and the end would come quickly a few days later. We were told that he'd most likely die in late Nov or early Dec 2020, and that he might see Christmas 2020 but "probably not."
In the event he was weaker, and sleeping more, but not obviously more ill by Easter 2021. And then he had a stroke, which we hadn't anticipated at all. He recovered from the stroke but died of pneumonia in May.
So I suspect that it's hard to find an idea of what my sister's upcoming dying process would be like because even if you are given an idea, if might prove completely wrong.
Just back from Dr New Chap who says my fortnight ago's PET CT showed I was Not Sick Enough to qualify for a new drug. So I am carrying on with my current one - which is really the best one around for my situation.
Dr New Chap is not worried so I'm not worried. (I can only get New Drug if my cancer spreads to my lungs or brain. Then I would really have something to worry about!)
I also got his ok to DRINK (in moderation). Which will also improve my Quality of Life. (This after three and a bit years under the dictatorship of My Significant Other who was taking advice from Dr Google - who of course is not a New Zealander so has no idea!)
Sounds like positive news from NicoleMR and Galilit and that is really good to hear.
NicoleMR, How is Taxol administered?
My post-op check was yesterday - only took about two minutes! As I thought, the last of the four drugs is not going to be prescribed and if all well in three months, then that will continue unless there is another lump or something.
(And my heart by-pass son is progressing very well.)
This morning I received a copy of the letter the Surgeon sent to GP, showing the dates of the - lengthening! - list of my co-morbidities. Anyway, the lump was 7 mm and Stage 2. No problem. Then a point or two later, it said: MR/HER2 - Grade III. I left a message for the Breast Clinic Nurse, who phoned me back. I did not know there was a difference between Stage and Grade, and in fact I don't think I knew the word 'Grade' was used anywhere.
It seems that 'Stage' refers to the aggressiveness of the cancer, and 'Grade' refers to a something in the cells which shows the likelihood of it striking again; III being the worst. However, since the small area shows clear, I can see no problem there either.
We have home health care for Mr. Image. A nurse now comes once a week as does a physical therapist. He is feeling better with care this week, and as the caregiver so am I. We have multiply doctors appointments starting next month to trace down all of his issues. His cancer doctor says he can skip his visits this month and work on tracing other issues, as Mr. Image is getting a bit overwhelmed by so many different kinds of doctor appointments.
Mr F passed another 3 monthly check-up - but the specialist is retiring, which is a great loss. Described by the daughter of a friend who works in the same hospital as 'the kindest of men and doesn't take any bullshit' which is so want you want in a doctor.
My oncologist has a wicked sense of humour. At my last visit he asked me if I knew that cancer is a growth industry. This was accompanied by an evil grin. I guess when the doctor is dealing with terminal illnesses they need to have lighter moments.
My blood test came back and all my cancer markers are down (from the August one)
Of course it's still incurable and everything else but no pain, no new pain and markers dropping is still nice.
(I studied economics so " a decrease in the rate of increase" is a concept with which I am familiar)
Indebted for all your thoughts and prayers ...
Comments
I was actually here on Ship some four years ago trying to find something, anything, that would give me an idea of what my sister's upcoming dying process would be like. Didn't find anything, though.
@Graven Image very fortunate timing for the nurse! But sounds like a tough balancing act to sort out effects and side effects.
I have been following.
Nadia weaves grace and beauty and hope from the roughest of threads. She is raising money for young scientists by walking on her palliative care ward, which is all she can do, and gaining meaning from all the moments of her life that she is able to hold.
I don’t think this sets a bar for others who are dying - whose journeys may be easier or harder - but it does challenge those who are not.
I think I see what you mean now. My DAILY life is nothing like this, and I'm in decent health.
I was looking for stuff like "what is it like to change the stuff around a stoma, and where do you get supplies, and how do you know (guess) how much time is left (months, days, hours) and what is terminal restlessness if it happens, and what exactly should you say/do/not say/not do to be a blessing and not a curse to the person who's going through all this? Especially that last bit. Because I don't know by experience what it is to live with the knowledge that I won't be here next year, even though that may be the case. But it seems to me a heavy burden, and one I wouldn't want to increase. And it would have been good also to know how other people typically react, and if/when it would be helpful to, er, talk to them or even shoo them away when they are making pests of themselves. Because there was some of that in my sister's last days (in Rossweisse's too) and though you never want to take anybody's agency away, towards the end there were hours and days when the person I loved could NOT really respond herself (drugs, etc.) to behavior that seemed to me pestilential. Though it wasn't clear at points whether she was willingly tolerating the behavior for the sake of the relative, or whether she just couldn't muster up the energy to tell them to fuck off.
Forgive me. This is maybe not the right place to discuss stuff from this perspective, that of an onlooker. But I do wish I had done things better.
@Lamb Chopped yeah, none of those nitty=gritty details. I can see how that would be helpful to read, too, if someone's up for documenting it. When I went through my cancer surgery I joined a message board for those with the same cancer and it was very helpful to hear from other people about what they were experiencing, in full, messy detail.
In the event he was weaker, and sleeping more, but not obviously more ill by Easter 2021. And then he had a stroke, which we hadn't anticipated at all. He recovered from the stroke but died of pneumonia in May.
So I suspect that it's hard to find an idea of what my sister's upcoming dying process would be like because even if you are given an idea, if might prove completely wrong.
Just back from Dr New Chap who says my fortnight ago's PET CT showed I was Not Sick Enough to qualify for a new drug. So I am carrying on with my current one - which is really the best one around for my situation.
Dr New Chap is not worried so I'm not worried. (I can only get New Drug if my cancer spreads to my lungs or brain. Then I would really have something to worry about!)
I also got his ok to DRINK (in moderation). Which will also improve my Quality of Life. (This after three and a bit years under the dictatorship of My Significant Other who was taking advice from Dr Google - who of course is not a New Zealander so has no idea!)
Dr New Chap sounds like he could be an honorary New Zealander.
NicoleMR, How is Taxol administered?
My post-op check was yesterday - only took about two minutes! As I thought, the last of the four drugs is not going to be prescribed and if all well in three months, then that will continue unless there is another lump or something.
(And my heart by-pass son is progressing very well.)
It seems that 'Stage' refers to the aggressiveness of the cancer, and 'Grade' refers to a something in the cells which shows the likelihood of it striking again; III being the worst. However, since the small area shows clear, I can see no problem there either.
I found taxol very taxing
It's been 7 years now, and honestly, cancer can go and do one.
Of course it's still incurable and everything else but no pain, no new pain and markers dropping is still nice.
(I studied economics so " a decrease in the rate of increase" is a concept with which I am familiar)
Indebted for all your thoughts and prayers ...
Not so great, @Firenze
Thinking of everyone else with the dread diagnosis, including @idj and @moonlitdoor