Hi just very short, as an update on the daily struggle:
Today I am having trouble to focus on work or anything else. My brain feels like pudding. Of course the hypochondriac in me raises his little voice: Here we go!! Thats it again: the tumor is coming back!!!!! Of course I had this before, and some of the people out there will probably tell me: Come on!!! Its FRIDAY!!! Thats completely normal, who wants to focus on WORK on a Friday afternoon???
Anyway, I will work on some Images I took yesterday at the microscope, thats easy and I don't need to run around.
Take care you out there! I know this is common, but different from you "normal people" I have a very ugly "box of similar things" to put this into. And therefore it makes me feel bad and anxious!
Have a nice weekend, guess you need it as much as I do.
T.
Friday, August 8, 2008
Monday, August 4, 2008
Dealing With Literature
This entry is inspired from a comment on my "survival curve" in the "Another MRI" entry from May this year. As a cancer patient, diagnosed with a malignant cancer with poor prognosis or, later on (hopefully) as "cancer survivor" -euphemistically, since recurrences can occur even after a long time (depending on tumor type though) one has to deal with the hard facts: The literature o your own condition might not always be encouraging, sometimes straight-out devastating!!!! Big question is: How to deal with that???
Before going ito this, here a quick "disclaimer":
For the patient as a general rule;
Information is everything!!
Learn everything you can about your cancer!!! You have to know your enemy, if you want to beat it:
-what cancer is it exactly that I have? (your doctor)
-What is known about my type of cancer at this point? (American Cancer Society
, PubMed)
-what are the treatments which are state of the art right now? (PPubMed)
-where are these treatments performed with best success (clinical trials?)
-can I get in there? (contact the trial directly, or through your doctor!)
-what other things can I possibly take to increase my chances to avoid return of the cancer (recurrence)? (herbal/alternative treatments/supplements, general health)
After this initial phase, however, comes a second phase, very different from the first one, and essentially lasting for the rest of your/the cancer-survivors life:
The phase how to deal with depressing information:
“survival rates are poor”
“despite improvements in therapy, most patients invariably develop tumor recurrence.”
Or, as in the last one here:
5. Prognosis
Virtually all patients with malignant glioma will experience recurrence and will die of progressive disease.
So the message is: No hope, you/I will die inevitably.
Also, after 3 years in remission, the prospect of a median survival of 5 years is not exactly encouraging anymore
However, the announcement of death is nothing that can help us in any way.
So the first decision to be made is: live or not to live. Since this is a very philosophical question in itself I do it want to indulge in it for too long here. Only so much. I have decided on this question in the water with my surfboard the day when I had my seizure, and didn’t know how to make it out of the water: I realized: “I want to live” There was no question, no doubt at all.
I very much believe this decision is crucial for the fight against cancer!!!
But I should mention here that I am certainly not the superman, who has this indestructible desire for life. I am , at least so I see myself, more of a a melancholy type, who has some serious doubts about the whole “is it all worth it?” and “will humankind survive?” –thing. The surf accident decision was really strictly-out-of-the-belly without much thinking, it was just there, maybe also out of some semi-mystical belief that there is still something out there for me to do (in science, life, whatever). And since I am supposed to do it, I cannot die yet.
Now, what is my conclusion from this?For now, I avoid submerging myself into literature-searches, now that I am up-to date on therapies and newer developments, as long as there is no breakthrough, I will just try to live healthy, and believe in myself.
In the end we all die: “No one will get out of here alive!!” (Don’t know, where this is from but it’s a great quote!)
briefly: Learn what can be learned in the literature, and then Live what needs to be be lived WITHOUT LIterature. Smashing your head against the statistics will not help anyone. I am living from day to day and am grateful for every day/minute I have.
Before going ito this, here a quick "disclaimer":
For the patient as a general rule;
Information is everything!!
Learn everything you can about your cancer!!! You have to know your enemy, if you want to beat it:
-what cancer is it exactly that I have? (your doctor)
-What is known about my type of cancer at this point? (American Cancer Society
, PubMed)
-what are the treatments which are state of the art right now? (PPubMed)
-where are these treatments performed with best success (clinical trials?)
-can I get in there? (contact the trial directly, or through your doctor!)
-what other things can I possibly take to increase my chances to avoid return of the cancer (recurrence)? (herbal/alternative treatments/supplements, general health)
After this initial phase, however, comes a second phase, very different from the first one, and essentially lasting for the rest of your/the cancer-survivors life:
The phase how to deal with depressing information:
“survival rates are poor”
“despite improvements in therapy, most patients invariably develop tumor recurrence.”
Or, as in the last one here:
5. Prognosis
Virtually all patients with malignant glioma will experience recurrence and will die of progressive disease.
So the message is: No hope, you/I will die inevitably.
Also, after 3 years in remission, the prospect of a median survival of 5 years is not exactly encouraging anymore
However, the announcement of death is nothing that can help us in any way.
So the first decision to be made is: live or not to live. Since this is a very philosophical question in itself I do it want to indulge in it for too long here. Only so much. I have decided on this question in the water with my surfboard the day when I had my seizure, and didn’t know how to make it out of the water: I realized: “I want to live” There was no question, no doubt at all.
I very much believe this decision is crucial for the fight against cancer!!!
But I should mention here that I am certainly not the superman, who has this indestructible desire for life. I am , at least so I see myself, more of a a melancholy type, who has some serious doubts about the whole “is it all worth it?” and “will humankind survive?” –thing. The surf accident decision was really strictly-out-of-the-belly without much thinking, it was just there, maybe also out of some semi-mystical belief that there is still something out there for me to do (in science, life, whatever). And since I am supposed to do it, I cannot die yet.
Now, what is my conclusion from this?For now, I avoid submerging myself into literature-searches, now that I am up-to date on therapies and newer developments, as long as there is no breakthrough, I will just try to live healthy, and believe in myself.
In the end we all die: “No one will get out of here alive!!” (Don’t know, where this is from but it’s a great quote!)
briefly: Learn what can be learned in the literature, and then Live what needs to be be lived WITHOUT LIterature. Smashing your head against the statistics will not help anyone. I am living from day to day and am grateful for every day/minute I have.
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