One typical comment I hear from fiends on my condition, is that every time I mention a specific defect, I have through the tumor and the following surgery,
I do get comments like :
"Oh I have that all the time" "This happens to me too".
While this is meant in a nice way to make me feel normal and healthy, over time it turns around and gets annoying, if I want it or not. It feels like my frustration is just imaginary and not real. However, if I mention a defect its because I realize it as something I am constantly struggling with, and WAS NOT in the past. One typical thing is: short-term memory problems, like putting stuff in a place and not remembering where, going back in the apartment to pick up something forgotten and forgetting what it was, while getting inside.
Guys, I know what you want to comment right now, believe me I know its meant well, but don't do it, please. if you are a brain tumor patient, however, you know exactly what I am talking about. Its small things and, Heaven knows I am SO grateful that this is all, for all that counts, I could be paralyzed, peeing in my bed every night. Instead , I am working as a scientist, write papers and successfully apply for grants.
All this that thanks to a very skilled neurosurgeon! Thank you, Linda! I cannot tell how much this means, your dedication and thoroughness and also your courage, to get that last, very deep lying piece of tumor you saw in the in-OP MRI!!!
A strange deficit that occurred last wednesday: we have a lab meeting at 8:30, which is "half nine" in German. Since I'm a late guy, I always have a hard time to get there that early, well, last wednesday I came late. However: Until I entered the institute I was certain, I would be perfectly on time. I only noticed that I could open the door without the key card (which works only after 9). I have no idea, how I managed to get the time so wrong! somehow half nine must have translated into 9:30 instead of 8:30. I know I did not have any seizure, because riding the bus I would have missed the stop. Plus I was among people somebody would have noticed for sure!
Well, doing science is the best rehab for all this. because IT MUST NOT HAPPEN, if I want to perform my job halfway OK. So this is a very strong force that keeps me fighting against those frustrating little defects (and they are so little, that I almost feel ashamed complaining, since I know very well, what other people are going through... But every little unexpected defect brings back that FEAR... it may all start again!!!)
Again I thank God that these are all my "Problems" at the moment. It could be very different, and I'd like to remind you of the statistics for Glioblastoma/Anaplastic Astrocytoma I posted in an old entry early in this blog. But I' m still here, and this is one big reason or writing this blog: THRE ARE SOME WHO GET OUT OF IT!! Do NOT give up hope early! You (or your loved one) may be one also! But for that believe in yourself and reject that THING from the deepest heart! There are no guarantees, but are there any guarantees in life at all? Be bold and cherish life! And stay alive!!
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Hi there and thank you for your great blog.
ReplyDeleteI have just been diagnosed with an astrocytoma. And have been operated on- they got out as much as they could see. Now trying to find a way to deal with this new situation. Seems impossible- but it is also unavoidable.
I wish I was a scientist, too! In that case the doctors might talk to me more openly, and stop assuming that the best thing for me is to pretend I am all normal and healthy. What kind of people can do that, after being told they can never be cured and will die? My need to understand the illness, the prognosis, the functions of my brain, the specifics of my tumor and treatment alternatives- this is just a proof that my personality is more or less the same after the surgery!
And then there is the central task of finding a way to live with this, to really live. Thank you so much for your inspirational input.
I.
Hello, I.
ReplyDeletethank you for your comment, good friends always tell me. Death can happen anytime even to a healthy person. Also, my Oncologist, told me one time, the main difference is that "with your diagnosis you likely know WHAT you will die from". Well, my surgery is 5 years in the past now and I'm still here, but I AM VERY AWARE THAT I AM ONE OF VERY FEW. One fellow patient (actually someone I met through this blog) was just diagnosed with a very aggressive tumor recurrence, how unfair is this? So although I still think I live on borrowed time, I slowly begin to hope I may end on the "safe side" Not sure if there IS a safe side with this tumor-ever! So my "advice" (if one would call it so) is the "usual": live now and enjoy every second. Don't forget the beast in your head, but don't let it dictate your life either, I travelled to China, changed my job and my country of residence (although I may come back to the US one day, as my girlfriend is US citizen now). And in general, I try to be a good person and do something useful with my life. Well, you will say, that sounds like what millions of people do, right? But this is exactly the point.
Thanks again for sharing useful insight and experience. It's a whole different life situation this, that needs to be worked hard on in order to hopefully recemble that of all those millions of people. For me personally I think that this whole thing of learning about the disease and its progression and treatment, is something that is needed in order to not let the beast dictate my life. To be able to trust someone to do everything possible medically, so I can consentrate on what only I can do; to live now- The relationships to the people around me, the prosesses of mourning, handeling anxiety, doing good stuff. It is so difficult tho', when you are operated on, your conciousness changes, you are told about the harsh diagnosis- and then expected to leave it be. To forget about it. "Live normally". I don't know.. I think this has to be a new normal. Am trying to create one.
ReplyDeleteI.
Hello, again, "a new normal", I like that. You are absolutely right, when you are operated on the brain, you are operated on what is YOU, and so naturally, it has a profound impact on who you are. And although, I am sharing insight here, I also am still overwhelmed by the situation. its a process, and not a smooth and easy one. There were plenty of moments of desperation. Even five years after surgery, I have those sometimes. After the diagnosis you are part of the people who are on the path to become a "cancer survivor", which is a task that cannot really be "completed", as long as the cancer can return. So I feel like that this subconscious fear became a permanent part of myself. What I am trying to say, and what is my main reason to write this blog: To tell everybody that I am still out there and going strong, despite of all you read, some might get away, or at least last quite long time and collect some precious moments of life, and, after all what else counts? Take care and be sure you are in my thoughts! You can do it!! Be strong! As a practical thing to do: I did a meditation class, which helped me quite a bit (with both coping and my concentration. OKOK, you will say THATS not very original, but its the truth.) Stay in touch!
ReplyDeleteThomass
Hi Thomass,
ReplyDeleteIt is nice to read you're blog in that we are in a similar situation, it is not nice in that I would never wish that situation upon anyone.
A brief background of us, my husband was diagnosed with an anaplastic astrocytoma in 2000, he had surgery and radio therapy, and then began chemo, but had a bad reaction and stopped. However all of this kept it at bay for 5 years until it returned. This time Radiotherapy only aggravated it:( however, this time we undertook what was meant to be a 2 year course of the oral chemo, to keep the little bugger at bay. Funny thing was, within 7 months it had disappeared completely, and that is the way it is staying to date... 5 years on from the reoccurrence. Lucky hu! Unfortunately in December 2007 my husband also suffered a stroke as a result of the radiotherapy, apparently this is a very rare side effect, but he has fully recovered (amazingly, as it was reasonable server). He is back to working almost full time and helping me out (as much as a bloke can, lol) with our 2 kids. Both of which we have had since his original diagnosis and chemo stints... our youngest is 5 months.
I know we are phenomenally lucky, he doesn't so much due to the fact that he lives in absolute denial, which may sound like a bad thing but I'm sure it's why he's still here! We do live our life as normal, we still get upset over the little things, we still treat every day as a normal day, and we still breath in and out, just like everyone else... just with a little bit more to think about for one week every 3 months (the week between MRI and DR's app)
We are however incredibly thankful for the fact that we have been so lucky with something that can be such a difficult prognosis’. It is because of this that we are writing a book to tell people our story. We are also hoping to include other stories of inspiration and hope from others in similar situations. Our aim is to offer people who are being diagnosed for the first time an alternative to the statistics, and common acceptance of this killer disease, let them know that people can beat the odds, and to remain hopeful.
I would really like to speak further with you about this subject, if that is something that you would be happy to do. Please feel free to email me at be473@hotmail.com Thanks again for your blog, it's always nice to hear something inspirational!
Thomas -- When did you have the surgery? What was your story from the first two years after diagnosis? Have you ever surfed again?
ReplyDeleteI ask these questions, as a wife of a man with anaplastic astrocytoma, and who loves to surf.
Please respond to joel.angie.bauer@gmail.com
Thank you.
Yes, I have surfed again. I do have more problems with my balance and the scare from almost dying still lasts on me. I also do not go alone anymore. But then I think, it did not happen when it had the chance. So it will not happen -hopefully.
ReplyDeleteI think drowning during a seizure is the greatest risk, Does your husband take anti-seizure medication? Did he ever have seizures? Is he seizure-free in daily life? Because if I would have had a full-blown seizure IN THE WATER, like I had them later, after surgery, I would not be writing this. No question.
These seizures never announced themselves and my consciousness was blanked. no way I would be alive now. Even if you go with friends, until they realize, its too late. (in the water, everybody is busy looking for the waves. I am sure you know, so its hard to keep an eye on someone nonstop. You catch a wave, you are off for a few minutes. plenty of time to drown, if you think about it.
But if he is reasonably seizure-free, I think he should go and surf. If he is safe to drive, he should be safe to surf. Its important to have a life. But ultimately this is always a personal decision.
I will send you an email as well....
Hi Thomass,
ReplyDeletejust want to thank you for this blog.
Best of luck with everything :)
/Magnus
Hi again,
ReplyDeleteHope all is well with you, and that you are enjoying summer. Looking forward to the next update!
I.