Silverbirch Posted October 23, 2015 Share Posted October 23, 2015 Good luck Sara and so glad you are pain free. ((((((())))))))xx Link to comment Share on other sites More sharing options...
Seraphim Posted October 23, 2015 Share Posted October 23, 2015 Wow ,I am so glad you are pain-free Sara! You will be ok! Hugs. I'm sure the hospital visit will be OK. Link to comment Share on other sites More sharing options...
Capricorn3 Posted October 23, 2015 Share Posted October 23, 2015 Awesome. Glad you have been pain-free and hopefully will continue that way. Wish you all the luck in the world. Link to comment Share on other sites More sharing options...
sara-pezzini Posted October 23, 2015 Author Share Posted October 23, 2015 Thanks guys! After 4 months of non stop pain it's a relief that we found the right amount of meds and the pain is subdued at the moment. It's so nice to be able to eat without pain! Something we normally take for granted...... Hope it stays away for a while again. And I'm curious what they will say Wednesday at the gamma knife hospital....will keep you updated Link to comment Share on other sites More sharing options...
HeartGoesOn Posted October 23, 2015 Share Posted October 23, 2015 Sending good thoughts your way, and wishing you all the best, Sara. Link to comment Share on other sites More sharing options...
sara-pezzini Posted October 28, 2015 Author Share Posted October 28, 2015 The date for the radiation is set! January 5th! Very nice doctors and nurses there. Got a tour of the place and they showed me how it will go that day and that gave me a good feeling. For now less stress! Link to comment Share on other sites More sharing options...
Seraphim Posted October 28, 2015 Share Posted October 28, 2015 That is great Sara! Link to comment Share on other sites More sharing options...
sara-pezzini Posted October 28, 2015 Author Share Posted October 28, 2015 Thank you! It was an exhausting day and I'm even more tired than if i work, so much info and lots of impressions......took pics of the machine and the frame they will screw into my skull so i can mentally prepare myself. At least now i know I'm in good hands. The oncologist gave me a very bad feeling but this doctor is so very sweet and understanding of every fear i have. I feel taken seriously now. Told him i would really like to set a date instead of wait for a call and that too was no problem at all and he could understand that.... All in all a good feeling! Link to comment Share on other sites More sharing options...
sara-pezzini Posted December 19, 2015 Author Share Posted December 19, 2015 Tiny update especially for tiredofvampires, After almost 10 weeks of no pain that pain came through again 2 days ago and i was finally able to try out the ketamine creme. And for now, to my great surprise it seems to work! I can eat pain free which after 2 days of pain wouldn't normally be the case, so I'm quite happy and impressed for now! After the radiation i may experiment with it even more to the point of using creme and lower the dosage of meds, maybe i can even get off the meds then in time so for now a huge thank you for the tip! Sara Link to comment Share on other sites More sharing options...
tiredofvampires Posted December 20, 2015 Share Posted December 20, 2015 Sara, that's great news! I'm so glad it's working for you!! Now that you don't have much longer to wait for the radiation, hopefully this will tide you over and then as you say, help you titrate down from the oral meds. Sounds like a plan! Link to comment Share on other sites More sharing options...
sara-pezzini Posted December 20, 2015 Author Share Posted December 20, 2015 Thank you! That Is the plan As of today the pain is just completely gone! So I'm happy! Link to comment Share on other sites More sharing options...
tiredofvampires Posted December 26, 2015 Share Posted December 26, 2015 Hi sara, I came across this website in my own research, and I thought right away of posting it here! The Institute for Neuropathic Pain in the Netherlands, and Dr. Jan Keppel Hesselink have been on my radar for a while, but this is the first I've visited this page on their website. This gives you more options, if you ever need to add something else or more to the topical protocol, besides ketamine. You can see there are contacts there for consultation as well. I'd browse the site further but it's all "Greek" to me, haha! Hope you're having a great, pain-free Christmas! Link to comment Share on other sites More sharing options...
sara-pezzini Posted December 26, 2015 Author Share Posted December 26, 2015 Thank you, i know the site and through professor Kopsky who is also mentioned on there, i got the crème! After you talked about cremes i searched and came across that site and they've helped me get the creme. So funny that you know about a Dutch site haha! Link to comment Share on other sites More sharing options...
tiredofvampires Posted December 26, 2015 Share Posted December 26, 2015 Haha, I know! In fact after I posted that, I wondered if that was the site/contact you already had, because they are professors and you mentioned something along those lines. Literally on the same page! Cool!! Link to comment Share on other sites More sharing options...
sara-pezzini Posted December 26, 2015 Author Share Posted December 26, 2015 Great minds think alike lol Link to comment Share on other sites More sharing options...
sara-pezzini Posted December 26, 2015 Author Share Posted December 26, 2015 I asked kamurj to move this thread to the journal section because i had planned to start a journal about this tumor thing anyway and this saved me a lot of re-typing! Now i can just talk about whatever in this journal! Like the fact that my ex called yesterday to wish me happy Christmas and i am not the type of person to ignore someone so we talked. Didn't know how to feel really because he was so important to me for 11 years and so i get caught up in a rush of emotions when i talk to him. Also didn't want to fight with him at Christmas.....so we talked, i listened, i told him what's going on since i cannot just lie when people ask me how things are. I had previously asked him in July not to contact me anymore and he listened for a whole 5 months. And now a day later my emotions settled again and i really wish he hadn't called because my feelings haven't changed, i don't want him in my life anymore. And he will call again, he said so, that's the problem with him, give him a finger and he takes the entire hand. He will call and he wants to come over after the radiation, i know he's worried... So now i will have to explain it to him once again, and i know each time i do, it hurts him and he doesn't get it. He has asperger's and so he really doesn't understand. He was so happy i picked up at all and to hear my voice and now he thinks we're back on track again. So i have to keep hurting him over and over.... Argh frustrating! Link to comment Share on other sites More sharing options...
sara-pezzini Posted December 26, 2015 Author Share Posted December 26, 2015 trolls on here are so funny....haha it keeps me entertained! been making soup today, i am loading my freezer with food so that i don't have to worry about that right after the radiation, since the dexamethasone is supposed to be very nasty.. so better be well prepared....freezer full with food, i can survive for 2 weeks without having to do anything more that put food in microwave and i suppose i can still do that! now i have a nasty cough, which sucks because obviously i cannot cough during mri and radiation, and since it is not a dry cough i cannot take anything for it.....hopefully it will get better or else i will have to call my doc to prescribe something that stops the coughing.... Link to comment Share on other sites More sharing options...
sara-pezzini Posted January 2, 2016 Author Share Posted January 2, 2016 Well it's nearly time.....2 more days and then Tuesday it will be time and I'm scared....definitely scared and the nerves are getting worse. I have done all that i wanted to do before so finally there is nothing more to do but wait. My brother and his family are in Holland which is nice and i get lots of messages to support me which means so much to me. But i will be glad once Tuesday is over! Link to comment Share on other sites More sharing options...
Seraphim Posted January 2, 2016 Share Posted January 2, 2016 I will be praying for you on that day Sara. Hugs. Link to comment Share on other sites More sharing options...
sara-pezzini Posted January 2, 2016 Author Share Posted January 2, 2016 Thank you very much vic, means a lot! Link to comment Share on other sites More sharing options...
Realitynut Posted January 3, 2016 Share Posted January 3, 2016 Hope things go well....would be awfully scary! HUGS. Link to comment Share on other sites More sharing options...
thejigsup Posted January 3, 2016 Share Posted January 3, 2016 You will be in my thoughts and prayers. Link to comment Share on other sites More sharing options...
tiredofvampires Posted January 3, 2016 Share Posted January 3, 2016 The fear is the worst part, remember that -- you'll be fine! You are in good hands, from what you've described. ((hugs)) Link to comment Share on other sites More sharing options...
sara-pezzini Posted January 3, 2016 Author Share Posted January 3, 2016 Thank you all! Yes the fear is bad but so will the actual procedure since I'm scared of needles but I'll live haha I just keep reminding myself that i chose this and i do it to shrink the tumor and stop the pain ultimately. So i have a goal! So that one day will be bad but then it's over and I'm on my way to recovery Link to comment Share on other sites More sharing options...
Blue_Skirt Posted January 4, 2016 Share Posted January 4, 2016 Sara, I will be thinking of you tomorrow! Link to comment Share on other sites More sharing options...
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