Yes, it's...umm...interesting to see the lump or other object one has inside one's person.
The MRI images which revealed the size and extent of my brain tumour were quite fascinating. How on earth could I have something the size of a small orange* inside my head, and not notice it?
Well, not until it got big enough to cause me to partially lose the use of my left side, and to cause seizures...
*the tumour, that is - not my brain...that's about the size of a turnip...
Got an offer (part ownership of a house in Aotearoa~New Zealand) which was very hard to refuse. Financially it was easy and a real winner. It would have been fun to have A Bolt-hole like that. But I did refuse, and rightly - all things considered in the light of cancer, covid, flights and my own personal restrictions and limitations, uncertanties, unpredictabilities and instablities. (Shades of the Rumsfeld (curse his name!) known knowns, known unknowns, and unknown unknowns!)
I declined, with sadness, but knowing I had looked at it, analysed it, liked it, but could not implement it in my current circumstances.
You never know what wonderful opportunities people will think to pass on to you and that is my joyful and thankful take-away from the whole episode
Me too.
But I am still floating on air that I had the opportunity to decide upon in the first place. And that the Universe has not stopped offering me New Things
Being able to make a decision about anything makes me feel good. So much of my life is doing as I'm told. Although a friend cheered me up by pointing out I still have to decide whether to take medical advice or not.
Yesterday, frustrated that neither the staff of the neurosurgeon nor the staff of the pain doc would call me back, I texted my oncologist. He called me back to say that, indeed, the referral had been sent - twice! (The first time was by the neurosurgeon; the second by the oncologist's nurse.) So I called the pain management folks again and had a pleasant conversation with one Liz, who promised to talk to the specialist himself and get me an appointment as soon as possible.
It can't come too soon - it's already been a rough day, and it's only 10:30 in the morning.
Yesterday, having taken medical advice, I went to a meeting of a group I used to attend regularly. We sat well apart, chatted about very little, and it was glorious! I came back buzzing.
Today I am still happy, but drained. Is that cancer, or the shock of coping with people again? There's quite a bit of minor stuff that I'm not sure about.
It may well be The cancer, @Robert Armin. I find myself feeling weary at the most unexpected times. But sometimes it’s very much worth a little fatigue for something enjoyable.
Indeed - the body (especially the immune system) is weakened by both the disease and the treatments. I think also one's cognitive functions are affected - sometimes revv'ed up by a crisis, sometimes slowed by fatigue.
Well, after getting a hurry-up appointment with the pain specialist, I underwent a procedure last week that was a painful failure. (He was going to fill in a couple of seriously messed-up vertebrae with surgical cement, but, while said vertebrae are crumbling on the side facing into my body, they're mighty hard facing out; he couldn't hammer the needle in.) He did give me a steroid shot, which I hope will kick in at some point.
On Saturday I tried half of one of the methadone pills he'd prescribed, and ended up sleeping much of the day. This morning I called to report, and to ask what he would like me to try next. Late this afternoon I got a close-to-hostile response, transmitted by a bored-sounded woman, who said that I could try a quarter-pill; if that didn't help, I should go back to the neurosurgeon who referred me to him, and request what she called a "cordectomy." (I looked it up; it's a procedure to remove part of the vocal cords.)
I think I've been fired.
(Happily, my oncologist was utterly outraged on my behalf. And the procedure is a "cordotomy," which Wikipedia defines as "a surgical procedure that disables selected pain-conducting tracts in the spinal cord, in order to achieve loss of pain...commonly performed on patients experiencing severe pain due to cancer or other incurable diseases.")
@Rossweisse I'm a little surprised your oncologist didn't suggest that previously - all this referring to keep colleagues in work! - but presumably he thought it best for a less invasive procedure to be tried first. It seems to me that a very highly skilled neurological surgoen would be needed to identify the "selected pain-conducting tracts in the spinal cord" and avoid the risk of dmaging those that might lead to paralysis.
May you feel the love and support of God in this very challenging time.
As was said in such circumstances when I was much younger - bugger this for a game of tin soldiers. But now for the prayers, holding up and sharing our strength with our heroic Rossweisse.
I'm not sure that I'm getting any benefit from the steroid shot, but I've had time to think it all through, and for now, at least, I shall deal with the pain for the sake of having a functional brain.
Tomorrow afternoon I have a CT scan, which will show whether or not the cancer has spread further in my liver. If it has, I shall be chucked out of the study, and it won't matter. If it hasn't, I'll ask my oncologist about the cordotomy. (Obviously, I'm hoping for the latter!)
After 6 weeks of waiting (and two enquiries as to "What's happening, folks?") ... I now find out my application for continuation of treatment has been sent to the super-important Committee for Exceptions.
Why? Because I did not die yet.
The system was happy to give me the drugs I need for 2 years but now that I am still here they have to reassess the situation. Because I'm supposed to have died or at least had to change to another drug regime. Does that seem logical?
I have had an excellent reaction to the drug: tumors in my shoulders, hips, pelvis, some ribs and spine have been destroyed, several of my remaining tumors are even shrinking (this from my last scan), and my blood markers ( which show "cancerous activity in general") are at really low levels.
I pray and am prayed for. (Thank you all), I eat well and hydrate, I exercise.
I am a FUCKING STAR patient!
Now I have to wait till next Monday till this committee deigns to meet.
The System is so fucked!
@Stercus Tauri, the average survival time for someone with my (rare but aggressive) version of breast cancer is 3 1/2 years. If I make it, it will be 10 years on November 9. (I would very much like to live to see it, in part because it would allow me both to vote in, and see the results of, the American election on November 3.)
I credit the orneries, and their cheering section on the Ship, for much of that.
@Galilit: BRAVA! Confound the bureaucracy, and do not die on anyone else's schedule! No surrender!
My current mood is "Wait and See" till Tuesday, strengthened by my oncologist saying he will appeal any decision to stop my meds or put me on something else. He says there's no clinical justification for any change in treatment.
He also said that up to 3 weeks delay will not endanger my situation. Which is very comforting.
And its not as if what I am on now is mouth-wateringly expensive. I am hoping it's just faceless bureaucrats and when all the info (including another, more detailed, letter from my oncologist) comes beofre this Committee
@Rossweisse I'm guessing you won't know what the CT scan shows about your liver until the results are filtered to you via your oncologist. But we are hoping that - as on past form - he continues to advocate on your behalf if there is any doubt you should remain in the study. And all of us here are cheering you on.
@Rossweisse I'm guessing you won't know what the CT scan shows about your liver until the results are filtered to you via your oncologist. But we are hoping that - as on past form - he continues to advocate on your behalf if there is any doubt you should remain in the study. And all of us here are cheering you on.
Thank you, @cgichard. I shall wait to hear - and when I do, the Fans of Orneries will be among the first to know.
In ten days, I am to see another high-powered neurosurgeon about a cordectomy, a surgery which will (one trusts) snip the obnoxious nerves that are causing the Screaming Meemies in my left leg, and cause them to stop hurting. I hope it works. (This time, I'll be taking my future trustee - who happens to be a partner at a major local law firm - along to take notes. It couldn't hurt.) If not, I'll be back to a wretched choice between too many drugs and too much pain.
Comments
Yes, it's...umm...interesting to see the lump or other object one has inside one's person.
The MRI images which revealed the size and extent of my brain tumour were quite fascinating. How on earth could I have something the size of a small orange* inside my head, and not notice it?
Well, not until it got big enough to cause me to partially lose the use of my left side, and to cause seizures...
*the tumour, that is - not my brain...that's about the size of a turnip...
I declined, with sadness, but knowing I had looked at it, analysed it, liked it, but could not implement it in my current circumstances.
You never know what wonderful opportunities people will think to pass on to you and that is my joyful and thankful take-away from the whole episode
But I am still floating on air that I had the opportunity to decide upon in the first place. And that the Universe has not stopped offering me New Things
Yesterday, frustrated that neither the staff of the neurosurgeon nor the staff of the pain doc would call me back, I texted my oncologist. He called me back to say that, indeed, the referral had been sent - twice! (The first time was by the neurosurgeon; the second by the oncologist's nurse.) So I called the pain management folks again and had a pleasant conversation with one Liz, who promised to talk to the specialist himself and get me an appointment as soon as possible.
It can't come too soon - it's already been a rough day, and it's only 10:30 in the morning.
Thanksgiving for @Robert Armin 's good results and prayers for pain relief, stat!, for Rossweisse.
Today I am still happy, but drained. Is that cancer, or the shock of coping with people again? There's quite a bit of minor stuff that I'm not sure about.
On Saturday I tried half of one of the methadone pills he'd prescribed, and ended up sleeping much of the day. This morning I called to report, and to ask what he would like me to try next. Late this afternoon I got a close-to-hostile response, transmitted by a bored-sounded woman, who said that I could try a quarter-pill; if that didn't help, I should go back to the neurosurgeon who referred me to him, and request what she called a "cordectomy." (I looked it up; it's a procedure to remove part of the vocal cords.)
I think I've been fired.
(Happily, my oncologist was utterly outraged on my behalf. And the procedure is a "cordotomy," which Wikipedia defines as "a surgical procedure that disables selected pain-conducting tracts in the spinal cord, in order to achieve loss of pain...commonly performed on patients experiencing severe pain due to cancer or other incurable diseases.")
May you feel the love and support of God in this very challenging time.
thank goodness you have such a brilliant oncologist, who is also a compassionste human being
And, at the risk of opening up myself to opprobrium:
((the bored-sounding woman)).
I wonder if she, too, had had a really shitty day? Not an excuse, but a possible reason...
I'm not sure that I'm getting any benefit from the steroid shot, but I've had time to think it all through, and for now, at least, I shall deal with the pain for the sake of having a functional brain.
Tomorrow afternoon I have a CT scan, which will show whether or not the cancer has spread further in my liver. If it has, I shall be chucked out of the study, and it won't matter. If it hasn't, I'll ask my oncologist about the cordotomy. (Obviously, I'm hoping for the latter!)
Why? Because I did not die yet.
The system was happy to give me the drugs I need for 2 years but now that I am still here they have to reassess the situation. Because I'm supposed to have died or at least had to change to another drug regime. Does that seem logical?
I have had an excellent reaction to the drug: tumors in my shoulders, hips, pelvis, some ribs and spine have been destroyed, several of my remaining tumors are even shrinking (this from my last scan), and my blood markers ( which show "cancerous activity in general") are at really low levels.
I pray and am prayed for. (Thank you all), I eat well and hydrate, I exercise.
I am a FUCKING STAR patient!
Now I have to wait till next Monday till this committee deigns to meet.
The System is so fucked!
I credit the orneries, and their cheering section on the Ship, for much of that.
@Galilit: BRAVA! Confound the bureaucracy, and do not die on anyone else's schedule! No surrender!
Well, yes, especially since I am just dying to meet Our Mother in the flesh as it were. I'm doing my best, honestly; praying rosaries and everything
He also said that up to 3 weeks delay will not endanger my situation. Which is very comforting.
And its not as if what I am on now is mouth-wateringly expensive. I am hoping it's just faceless bureaucrats and when all the info (including another, more detailed, letter from my oncologist) comes beofre this Committee
My current goal is to make it to November, so that I can vote against Certain Odious Persons. I'm starting to think that it's a possibility.
Thank you all immensely for your support!
Happy Dancers form a line here.
In ten days, I am to see another high-powered neurosurgeon about a cordectomy, a surgery which will (one trusts) snip the obnoxious nerves that are causing the Screaming Meemies in my left leg, and cause them to stop hurting. I hope it works. (This time, I'll be taking my future trustee - who happens to be a partner at a major local law firm - along to take notes. It couldn't hurt.) If not, I'll be back to a wretched choice between too many drugs and too much pain.