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.
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"No one will get out of here alive"
ReplyDeleteThe quote is from 'Five to one', by the Doors. I think it's also the title to a biography of Jim Morrison. The lyrics go:
"Five to one, baby
One in five
No one here gets
out alive".
Sorry, I so don't mean to be a smartass but I happen to know this one.
Fred
Thanks , Fred, as I mentioned in my mail: this quote always makes me smile (grim smile though) as it reminds me that facing death is a normal human condition, and in a strange way it makes me feel like a NORMAL person again, and thats what I want to be again: a NORMAL person!!!!
ReplyDeleteT. :-)
It's been 10 days since we read the grim survival rates. Today my wife and I were talking about it. We had a very rough 24hrs after we read it but I was noticing how we just seemed to have pushed the issue aside and had a pretty good week since then. I was wondering aloud whether we were not actually facing the thing and living in denial.
ReplyDeleteIn the conversation that followed, we figured that hey: we are dealing with the AVAILABLE information. Nothing more, nothing less. And right now (about 7 weeks post-diagnosis) the information is this: she has anaplastic astrocytoma, grade III; she is undergoing treatment. She follows her treatment; she helps it any way she can (diet, exercice, meditation). These are things she controls. - Now for the prognosis, we do NOT know IF, WHEN and HOW the tumor may come back. Therefore we cannot deal with it. This information just isn't available.
I spooked myself thinking about it earlier this week. I actually lost sleep over it, all the while thinking: this is stupid! The fear of the thing is actually worse than the thing itself! If/when a recurrence comes, we'll deal with it. Not before! We do NOT know what's gonna happen nor how!
Point made: Fear is your second worse enemy (besides the tumor itself). But actually, fear is the worst part. Fear is what brings the suffering. Do what you can, meditate or something, and push it aside. Deal with stuff when it happens, not before. It's a waste of time. ...Voila.
Fred
Hi Fred, you are absolutely right, they always told me "from now on you have to take things one step at a time" Now I understand it (at the time it seemed just a phrase) this was the most important piece of advise. You cannot handle all at once. And: don't get hung up on single sentences in papers, the researchers unfortunately do not consider that their papers are read by patients too, but phrase things in order to emphasize how important their research is.
ReplyDeleteWhich means usually all papers start with a lengthy introduction on how desparate the situation is, how poor the prognosis, etc, you have seen enough of these yourself (being a researcher, I know that all too well.) You do that to counteract those reviewers who typically start their comments: "The paper by xx et al., though interesting and scientifically sound, addresses problems with a well -treatable disease. Therefore it cannot be considered highest priority for publication in this journal which is committed to highest standards of excellence....Blahblahblah...
(Pls. Note: this is NOT a quote, but a made-up example to outline the style and language)