I saw my oncologist yesterday. He's hoping to get me into a study. I'd like that; it might help me, and even if it doesn't, the knowledge gained will help others.
If not, it's back to chemo with me. I must enjoy my eyelashes whilst I still have them.
I seem to have not only buried but actually neglected to mention the lede: The cancer has mutated, from hormone-positive to triple negative. This is a Bad Thing, because nothing works against it (for a while) but chemo. That's why getting into a study could be my best hope. Dammit.
I wish we could storm the gates of the people doing the study on your behalf.. I've always wanted to chain myself to railings or something equally dramatic.
More seriously - Good luck with getting into the study.
Well all I can say is "fuck cancer". My (now) 21 year old daughter is undergoing a year's worth of chemo, which followed 30 days radiotherapy, which followed brain surgery last July to remove a grade 3 tumor near her movement centre, which followed a sudden seizure out of the blue. I really thought this kind of thing would be something myself, my wife or our parents would be dealing with instead of a child. Hey ho.
Some days are OK-ish, others.... not so much... trying to keep things "normal" for everyone can be *really* hard work.
Anyway prayers for others in similar situations - it does help to check into this thread from time to time.
Relating to nothing at all above, I was having lunch with a friend who is a recently retired GP and asked him what he thought of the theory that cancer survivors can experience PTSD. "What do you mean, theory?" he asked. We left it at that.
A close friend’s nine year old granddaughter has been having treatment for a brain tumour for about 6 months - surgery, radiotherapy and chemotherapy. Just heard that the doctors say nothing more they can do, just make her comfortable. Feel like just screaming at the moment. To say the whole family are in bits is an understatement, plus giving my friend a hard time as she’s a Christian and, quite understandably I know, but they are scathing about a belief in a loving God.
When I was first diagnosed with a brain tumour, at the age of 64, one or two people did ask me (in effect) how I reconciled that with my belief in a loving God.
Quite where they got the impression that I possessed such a belief, I know not, but let that pass.
I could afford to be philosophical about it, having lived a fairly full life, but a child dying of a brain tumour?
Fuckety fuck (or duck) indeed....
And I was lucky/blessed (delete as appropriate) enough to survive, and live on (albeit somewhat disabled nowadays).
<votives galore> for all with the Big C, especially children.
...I...asked him what he thought of the theory that cancer survivors can experience PTSD. "What do you mean, theory?" he asked. We left it at that.
I remember when Medical Science™ finally declared, "Whaddya know? Chemo brain is a Real Thing after all!" when I was in the middle of my first treatments eight-and-a-half years ago. Even if they didn't think they needed to pay attention to the collective experience of their patients, how could they not say to themselves, "Gee, chemotherapy affects every single organ in the body. Do you think it's possible that it could affect brain function as well?"
<votive> For Galilit, as always.
<votive> For the 9-year-old. God damn it.
This week I have gone in very short order from having no pain in my liver to having fairly consistent discomfort there, as well as noticeably increased swelling. This worries me. I may nag my oncologist about that study in the morning.
Thanks, @caroline444. I reported it to his nurse today; I recommence chemo on Thursday. I'm still hoping for the study, but it takes time to get approval from the insurance company to send it to the special lab, and a couple of weeks for them to test it. This is a very aggressive cancer, hard to treat since it's mutated, and we can't afford to wait.
Today I go for a gastroscopy, where the doctors will have a look inside me to see if my treatment has worked or not. Officially I won't get the results for another 10 days, but I'm hoping for some feedback anyway.
I had run across an article (sadly forgotten now where but probably NYTimes) that stressed the importance of beginning palliative care early, before discontinuing treatment-with-a-view-to-a-cure. It made the point that people deserve to be as comfortable as they can be, and that there is no reason on earth why they should be forbidden to seek that goal at the same time as they are still seeking other goals. But even some medical professionals make the mistake of thinking palliative care is only for those who have discontinued everything else, and thereby rob their patients of some comfort they might have had otherwise.
The friend who has volunteered to take my cats when the time comes stopped by to meet them. Armed with some of the Dreamies hand-imported by @Margaret, she interacted with them, and they seemed to get along well. I think it's going to work out, although I really want to finish up at home, with my furry darlings on the bed beside me.
Ross and Galilit - thank you for those articles, both excellent. For me they really emphasised that we are all individuals, with individual approaches to death and bereavement, and how much our wishes need to be respected. I remember that my parents (both doctors) took part in experimental trials when they were in the last months of the illnesses that killed them - and I think that was because more than anything they wanted to contribute to any research that might help future sufferers.
Ross - so pleased to hear that you have a friend who is going to take your beloved cats....
My gastroscopy went well! According to the nurse the probe went down easily, without hindrance, which suggests that the cancer has gone. However, samples were taken for biopsy, and I won't get the official verdict until the 16th. Still it is looking promising.
Comments
I saw my oncologist yesterday. He's hoping to get me into a study. I'd like that; it might help me, and even if it doesn't, the knowledge gained will help others.
If not, it's back to chemo with me. I must enjoy my eyelashes whilst I still have them.
More seriously - Good luck with getting into the study.
Some days are OK-ish, others.... not so much... trying to keep things "normal" for everyone can be *really* hard work.
Anyway prayers for others in similar situations - it does help to check into this thread from time to time.
I meant "fuckety fuck" but the duck makes me smile.🦆
Quite where they got the impression that I possessed such a belief, I know not, but let that pass.
I could afford to be philosophical about it, having lived a fairly full life, but a child dying of a brain tumour?
Fuckety fuck (or duck) indeed....
And I was lucky/blessed (delete as appropriate) enough to survive, and live on (albeit somewhat disabled nowadays).
<votives galore> for all with the Big C, especially children.
Happens every so often
<votive> For Galilit, as always.
<votive> For the 9-year-old. God damn it.
This week I have gone in very short order from having no pain in my liver to having fairly consistent discomfort there, as well as noticeably increased swelling. This worries me. I may nag my oncologist about that study in the morning.
I'm really going to miss my eyelashes (again).
(Galilit)
#teamRossweisse
{{ Galilit }}
{{ Robert }}
{{ Rossweisse }}
{{ for all }}
<votive> Galilit
<votive> For all suffering from this monstrous disease
{{All}}
https://www.theguardian.com/commentisfree/2019/jun/04/lets-talk-about-the-art-of-living-and-dying-well
The friend who has volunteered to take my cats when the time comes stopped by to meet them. Armed with some of the Dreamies hand-imported by @Margaret, she interacted with them, and they seemed to get along well. I think it's going to work out, although I really want to finish up at home, with my furry darlings on the bed beside me.
Ross - so pleased to hear that you have a friend who is going to take your beloved cats....