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Post by Deleted on Feb 22, 2023 11:40:18 GMT
UPDATE: So I had my first radiation session today. I have had to wait so long as they were trying to sort out how to zap the tumor without too much damage to my vestibular nerve. The wait has been SO STRESSFUL and it was really getting to me. So when my husband called me from work to let me know they had scheduled the appointment (they call him because it's either in Arabic/French), I just burst out crying. I felt so scared. I woke up at 3:30am and couldn't sleep so I went downstairs and watched stupid videos on YouTube until I dozed off (20 minutes before everyone got up!).
DD had given me a squishy horse (think stress ball) to hold onto. And I REALLY listened to you guys and made a playlist that I had ready. I think I may have been the first person here to ever ask them to do that because it's just not something they do here...yet. There was a doctor there with the tech to make sure everything was lining up correctly. My eyes were puddling up and I told her how scared I was. She responded in English and told me I was going to be fine. I just needed to close my eyes and remember to BREATHE!
When I first walked in to the "room", I just had tunnel vision and all I could see was the table and the mask waiting for me. I plan on checking things out the next session as I couldn't even tell you anything at all about what else was there. The first 60 seconds, not going to lie, was like the moment right before the rollercoaster makes the big drop. They had to do a control scan to make sure things were right and came to adjust my head one more time. The doctor patted my shoulder and told me again to just breathe.
They turned the lights off and off we went. I did have to tell myself to breathe the first couple of minutes, but then I just listened to the songs and focused on that. I even remembered a very funny conversation I had with a friend last night that made me giggle. Before I knew it, the tech turned on the light and it was done. It's not even as loud as an MRI.
My sweet, sweet DH kept telling me how proud he was of me at how I was handling all of it. Then he took me to Starbucks for my treatment after treat.....a caramel Frappaccino!!!!!!!
Thank you sweet Peas for talking me through the anxiety of waiting and all of your suggestions. Small steps in a big picture...but today felt like a big leap! I feel brave...today!
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Yesterday I had my radiation mask made. Scans and more scans. The final scan, I had to wear the two piece mask (back and front). It is soooo tight that I can't even blink my eyes or move my mouth. I completely understand why...don't want my brain scrambled!
I am not particularly claustrophobic, but YIKES!!!! Once they bolted it down to the table and I knew I couldn't move, it definitely freaked me out.
Any Peas that have had radiation, how did you handle it? They aren't big on narcotics here in Morocco, so I am not even sure about Ativan being available.
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Post by monklady123 on Feb 22, 2023 11:48:40 GMT
Yesterday I had my radiation mask made. Scans and more scans. The final scan, I had to wear the two piece mask (back and front). It is soooo tight that I can't even blink my eyes or move my mouth. I completely understand why...don't want my brain scrambled! I am not particularly claustrophobic, but YIKES!!!! Once they bolted it down to the table and I knew I couldn't move, it definitely freaked me out. Any Peas that have had radiation, how did you handle it? They aren't big on narcotics here in Morocco, so I am not even sure about Ativan being available. Thankfully Ativan is not a narcotic so maybe it's available. If not, surely there's some other type of anti-anxiety medication there? Valium? Something just to relax you. It sounds like not a lot of fun, that mask! How long is each radiation treatment? My radiation was just lying on a table (breast cancer) so it's not at all similar to yours, so I don't have any advice about that. Hopefully you can find something to help! |
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Post by mikklynn on Feb 22, 2023 12:40:21 GMT
There is no harm in asking your doctor about something to help you relax. The worst thing that can happen is he says no.
Giant hugs - I think I'd have the same reaction.
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Deleted
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May 4, 2024 11:36:22 GMT
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Post by Deleted on Feb 22, 2023 13:46:42 GMT
Yesterday I had my radiation mask made. Scans and more scans. The final scan, I had to wear the two piece mask (back and front). It is soooo tight that I can't even blink my eyes or move my mouth. I completely understand why...don't want my brain scrambled! I am not particularly claustrophobic, but YIKES!!!! Once they bolted it down to the table and I knew I couldn't move, it definitely freaked me out. Any Peas that have had radiation, how did you handle it? They aren't big on narcotics here in Morocco, so I am not even sure about Ativan being available. Thankfully Ativan is not a narcotic so maybe it's available. If not, surely there's some other type of anti-anxiety medication there? Valium? Something just to relax you. It sounds like not a lot of fun, that mask! How long is each radiation treatment? My radiation was just lying on a table (breast cancer) so it's not at all similar to yours, so I don't have any advice about that. Hopefully you can find something to help! I am not entirely sure how long each treatment is. Maybe 10 minutes each session. I know that doesn't sound like a lot of time, but I for sure it was not that long the last scan they did, maybe just a couple of minutes. They first have to put it on and snap it down to the table and that takes a couple of minutes and just that...GAH!!!! I can breathe but it's just the feeling of being totally "locked in". How long were your sessions? If you don't mind me asking, how do they do the radiation for breast cancer without hitting other structures nearby? LOL, never have used Ativan so I "assumed" it was a narcotic. Definitely going to inquire about some good stuff. I jokingly asked DH if we couldn't load up a hooka with some hashish before the treatment!!!! |
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Post by revirdsuba99 on Feb 22, 2023 14:10:54 GMT
allipeas sorry you are having to go through that!!! Your post had me twitching just thinking about it. Call you doctor and get whatever you need.
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Post by monklady123 on Feb 22, 2023 16:44:04 GMT
Thankfully Ativan is not a narcotic so maybe it's available. If not, surely there's some other type of anti-anxiety medication there? Valium? Something just to relax you. It sounds like not a lot of fun, that mask! How long is each radiation treatment? My radiation was just lying on a table (breast cancer) so it's not at all similar to yours, so I don't have any advice about that. Hopefully you can find something to help! I am not entirely sure how long each treatment is. Maybe 10 minutes each session. I know that doesn't sound like a lot of time, but I for sure it was not that long the last scan they did, maybe just a couple of minutes. They first have to put it on and snap it down to the table and that takes a couple of minutes and just that...GAH!!!! I can breathe but it's just the feeling of being totally "locked in". How long were your sessions? If you don't mind me asking, how do they do the radiation for breast cancer without hitting other structures nearby? LOL, never have used Ativan so I "assumed" it was a narcotic. Definitely going to inquire about some good stuff. I jokingly asked DH if we couldn't load up a hooka with some hashish before the treatment!!!! 10 minutes in something like what you described sounds plenty long to me!  I honestly forget how long mine were. And, I don't think they worry as much about surrounding areas when it's breast cancer vs. a brain tumor... I mean, the breast is mostly fat. I don't know how they target just the area they need, but I know I had a lot of scans first and then they put a small tattoo (just a dot) on the side of my breast where the radiation would go in. But that was it. Not nearly as elaborate as what you'll be going through. Definitely ask your doctor for some kind of anti-anxiety medication. I am SURE you won't be the first one to ask! |
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leeny
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Jun 27, 2014 1:55:53 GMT
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Post by leeny on Feb 22, 2023 18:56:50 GMT
Mine was also for breast cancer, but I am sure you are not the only patient who has felt this way. Talk to the staff at your radiation center and ask what they can do to help you. Best wishes to you!
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Rhondito
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MississipPea
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Post by Rhondito on Feb 22, 2023 18:57:35 GMT
My sessions for breast cancer weren't very long - under 10 minutes.
The way I get through those type of situations is to just tell myself, "I've got to do this," close my eyes, and try to do some kind of mind activity - go through the alphabet naming a type of food with each letter, listing places I've lived, etc. Anything to focus on and make time pass.
Last year I had an MRI of my lower back. Any time I've ever had one before there was always a little mirror above my eyes and this one didn't have one; any time before the techs spoke to me periodically - no one said a word to me the entire time. I was almost in tears but I forced myself to keep my eyes closed and focus on anything I could to keep my mind occupied. It wasn't easy, but I got through it unscathed!
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Post by withapea on Feb 22, 2023 19:05:09 GMT
I’m not sure it’s helpful but the first couple of times are the worst and you kind of get used to it. I had a mantra and some visualization that I used. Think of your tumor getting zapped and try to focus on how short of a time you’re really in there, a tiny percentage of your day. I’m sure the mask is about the worst. I had to be in a mold and it was really uncomfortable.
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Deleted
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Post by Deleted on Feb 22, 2023 19:25:40 GMT
My sessions for breast cancer weren't very long - under 10 minutes. The way I get through those type of situations is to just tell myself, "I've got to do this," close my eyes, and try to do some kind of mind activity - go through the alphabet naming a type of food with each letter, listing places I've lived, etc. Anything to focus on and make time pass. Last year I had an MRI of my lower back. Any time I've ever had one before there was always a little mirror above my eyes and this one didn't have one; any time before the techs spoke to me periodically - no one said a word to me the entire time. I was almost in tears but I forced myself to keep my eyes closed and focus on anything I could to keep my mind occupied. It wasn't easy, but I got through it unscathed! Keeping my eyes closed the whole time is how I have been dealing with the MRIs. And those are WAY longer than the radiation sessions are supposed to be. It's just that feeling of being "locked down". Like having your head held under water...without the water. I like the idea of trying to name things with each letter. Something to keep my mind on something else. |
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Post by MorellisCupcake on Feb 22, 2023 20:00:34 GMT
I know exactly what you're talking about - I used to work in radiation oncology (as a coder but they sent us to the hospitals to see the whole process). The LINAC itself is intimidating, never mind the mask. This is what they look like, in case anyone has never seen one. They can cover the shoulders too, which would freak me out more honestly. Rad/onc mask
I would agree with some visualization to help you get through it. The mask is so important for precision and I know it's hard, but maybe tell yourself it's helping to kill cancer cells to get you to a better life. And never be scared to talk to the staff - they see everything and should be able to help you relax. I hope you get through this and onto healthier times! |
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Post by Basket1lady on Feb 22, 2023 21:18:31 GMT
I'm so sorry. That mask. Yeah, that was the worst part of the whole process. Mine was snapped in place and the sound of the snaps always got to me.
I didn't have radiation, but multiple Landmark MRIs where I had to stay perfectly still as they were mapping the placement of nerves and blood vessels. And I had to be awake for the mapping. What got me through it was the thought that it just had to be done. If not that day, then I'd just have to come back another day. I would keep my eyes closed the entire time and run songs and poems through my mind while I spaced out. They would always say something if I started to drift off to sleep.
You've come so far. I would imagine the days leading up the surgery were a blur and so busy that you didn't have a lot of time to dwell on it all. And now you have the time. You just have to get through it to get beyond it. Hugs!
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gsquaredmom
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Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Feb 22, 2023 23:12:52 GMT
Not going to sugar coat it. Radiation is brutal. My tongue and neck were radiated for 7 weeks/33 sessions. Each session was about 15 minutes, but on Mondays they did a more extensive scan, so that was usually 20 minutes. Some days took longer because they fine-tuned everything each and every time. And I was glad they did. SO close to my brain and every single day was an exercise in trust that it would all go exactly right. Once, the machine did an automatic shutdown because something was not right and it deemed itself unsafe. They had to reboot it. That session was closer to 45 minutes. When the machine shut down, they could not get it rebooted right away, so they came and unbuckled me and let me sit up for a break.
I have to say, no way would I use anything that kept me from being fully awake and alert. I closed my eyes, breathed deeply, and concentrated on staying absolutely still. There are unfamiliar noises, but you get used to the patterns. For as tight as it is, you actually can move very slightly. And then when my neck blistered, they could not lock it down all the way and I used all my staying-still skills to stay still. And I lost a lot of weight quickly, so it ended up not being tight enough and I had to similarly use my staying-still skills. I could not have done it if I had taken any kind of relaxant.
I am a medical scaredy-cat. If i can do this, you will do this, too! The hardest part is showing up to do something even when you feel like crap. Every instinct says stop, but you have to keep doing it. It is worth your life. It is brutal, barbaric, and scary, but I also felt so lucky to have access to this life-saving treatment. I wish you all the best with it.
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kate
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Jun 26, 2014 3:30:05 GMT
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Post by kate on Feb 22, 2023 23:23:29 GMT
I have not, but I just want to send you every single good wish as you go through this. God bless you abundantly and give you peace.
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tanya2
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Refupea #1604
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Post by tanya2 on Feb 22, 2023 23:23:54 GMT
oh my gosh that does not sound fun at all! Mine were for breast cancer also so not nearly as bad as that. And my hospital had pictures on the ceiling for us to look at, as if you were laying on the ground looking at the sky through the trees with cherry blossoms on them. But i did a lot of positive self-talk/thoughts through my treatments. About how this damn disease wasn't going to get me, how it was just a blip in the story of my life, and constant reassurance that I was going to get through it stronger in the end. It helped get me through it. I also like the idea of playing the mind games with yourself I know it's only 10 minutes, but it really does feel longer. But I know you can do this, and before you know it it will be finished.  |
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Post by missmcd on Feb 23, 2023 1:07:47 GMT
Another one who had six weeks of radiation for breast cancer. My tumor was on my left breast and they were very concerned with no moving, to avoid the heart getting large amounts of radiation. I had to hold my breath for long stretches and everything was very specific. My breath holds had to be very specific or the radiation machine wouldn't even start. Like someone else mentioned my radiation center had ceiling tiles that looked like sky and cherry blossoms, although I didn't find they relaxed me at all  What you've described sounds even more nerve wracking and I would also agree that you ask for something to help relax you and ease your mind. Good luck! |
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Post by Lexica on Feb 23, 2023 1:42:34 GMT
I’m surprised they didn’t discuss taking something to help you relax before the treatment. When I had to get a scan in an MRI machine, the doctor wrote a prescription for Valium ahead of time. I thought I would be okay without it, but knowing that if I freaked out, I would have to wait weeks to be rescheduled, I went ahead and got it filled.
We arrived about 30 minutes early, and the woman came out and said, “Oh, good, you’re here early. The appointment before you didn’t show up so we can take you right now. I hadn’t taken the pill yet. I had planned on taking it 15 minutes before my anppointment. I immediately swallowed it dry as we walked back to the MRI machine. I am so glad I took it because just as I was starting to think I couldn’t go on one more second, the pill started kicking in and I could feel my anxiety reducing. I highly recommend asking for one from your doctor, and don’t wait too long before the treatment to take it. You will do great!
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Post by pjaye on Feb 23, 2023 2:26:42 GMT
You've had some really good advice so far from people who have been through it.
I also wouldn't take any medication unless I absolutely had to.
Yes it's hard, but you've already travelled a hard road and you can do this too - it's mind over matter.
Yes there are extreme situations like panic attacks etc that people have no control over, but I do believe that most of the time in our adult lives we have to decide to deliberately cope with something...or to deliberately not to.
Try to shift your thinking about this - it isn't hard, you aren't locked down but rather you are deliberately choosing to do this...this is your cure, your power in this is staying still so the radiation hits the right cells to get rid of the rest of that tumour.
It's not a negative/bad thing, radiation is good, it's positive it's something you need and something you want. Radiation is a cure, it kills the thing that is bad.
Find something1 to think about that makes you feel calm a happy - good memory to replay, a poem you know, something to repeat over and over.
Ask if they will play a song on your phone...once you know how long each session will be...make a playlist that is just a little longer...get them to play it so you can just hear it, and that way you'll know how far through you are the entire time. 10 mins is 3 songs...you can lie still for 3 songs!
Also remind yourself that you aren't alone, there are people there operating the machinery, IF it gets too much all you have to do is calmly tell them what you're feeling - you CAN be let out, they WILL let you out, you just need to ask,...but it's OK and you can stay there a little longer, just 5 mins, you'll ask in 5 min...ok maybe another 5, you're still OK. Find a way to talk yourself INTO lying there just a bit longer, don't let any thoughts creep in that you can't - because you can, thousands of people do this every day, and you can too.
Don't let yourself get anxious, once you start down that path every one will get harder. I've had personal experience with my Dad, once his brain went into overload that first time, it happened every time and he was never able to have another session no matter how much sedation they gave him.
Not having this radiotherapy is not an option, and you are in control of this, and your control is to be calm and get it over with and get rid of as much as that tumor as possible.
Also as someone else mentioned - be prepared for issues with the machine, they are very specialised pieces of equipment and they need to work perfectly, periodically they will have things happen that delays appointments, this is quite common and don't be surprised when it happens. Always take something to do/listen to etc when it inevitably happens to you.
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Post by don on Feb 23, 2023 5:36:00 GMT
Anesthesiologists are like cops, there's never one around when you need one. I hate pain, being nervous, and not knowing what's going on, just wake me up when it's over, thank you.
I even want nitrous when I get my teeth cleaned. I wish dentistry was like the olden days, we had ether. you didn't feel the pain until the work was done, then you got ice cream to deal with the pain.
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SuPeaNatural
Full Member
AUSTRALIA
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Jun 27, 2014 8:49:11 GMT
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Post by SuPeaNatural on Feb 23, 2023 6:56:57 GMT
Not for radiation, but many years ago I had to have an MRI on my throat area. As soon as they put the mask across my face I started to panic, it felt like I couldn't breathe. I've never reacted like that before, and I tried to talk myself out of it, to no avail and I said to the guy that I couldn't do it. He said they had a few things to try before resorting to a tranquiliser. He put a little oxygen tube in under the mask - as soon as I felt the cool air on my chin, I calmed right dawn and was fine. Perhaps something like that would work for you too.
Good luck with your treatment, I had mine a year ago. No mask, but they did make me a "pillow", moulded to my head. It kept me still without covering my face.
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Post by JoP on Feb 23, 2023 7:58:19 GMT
For my radiotherapy sessions, I closed my eyes and pretended I was somewhere I wanted to visit on my bucket list. I then imagined dipping my toes in the warm sand or the cool water. Or walking to a restaurant and choosing food and drink from the menu. I also imagined visiting Peas I'd met on line and what their country, state had that I wanted to see for example the White House, Sydney Harbour Bridge. By the end of my sessions the staff would ask me where I was going or had been that day  Good luck you can do this |
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May 4, 2024 11:36:22 GMT
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Post by Deleted on Feb 23, 2023 9:50:47 GMT
This is pretty close to the mask, but the holes are a lot smaller AND they did one for the back of my head as well, so it's two pieces that are attached. I am assuming because the tumor is at the back of my head. It is still attached to my cerebellum. gsquaredmom I know you said you could move slightly, but I can't even open my eyes in this mask. I haven't asked if they could cut the eye holes out...not sure that I want to because I don't think it would help to open my eyes. ALL of you have given me such great tips and such GREAT support. It's exactly like you said basket1lady that I didn't even have time to blink when the surgery happened and I have had more time to dwell on the radiation part. People keep telling me I did the hard part (surgery) that the radiation is nothing compared to that. Logically, I know that... I am starting to discover things that are different about my brain like my ability to spell, write and read. My writing skills have always been my best asset and I am finding that I can't spell as good as I used to. When I read to my daughter at bedtime, I get tripped up on a set of words that I have to repeat a few times to say right. I can be in the kitchen cooking and turn around to get something out of the cabinet, and I am suddenly standing there not able to remember what I was going to do. I have discussed this with my surgeon and he said a) it may still be my brain healing from such a catastrophic (two brain bleeds during surgery) surgery or b) I may have some damage from the swelling of my brain (right before surgery) from the leaking CSF caused by the tumor. It just feels like these big waves that keep hitting me and I struggle around and stand up and another wave hits. It's "looking normal" but all these pains and emotions and changes that people can't see. I feel like I am whining because I know soooooo many of you Peas have been through such tough battles with cancer and have come out like champions. |
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Deleted
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May 4, 2024 11:36:22 GMT
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Post by Deleted on Feb 23, 2023 9:54:02 GMT
Radiation MaskSorry, forgot to attach the link I also forgot to add in my previous post, it's just the sitting around waiting for "the call". That the mapping is done and the treatment is going to start. If you knew me, you would know that I am NOT an anxious person AT ALL. Even the days leading up to my brain surgery, people kept commenting how calm I was about the whole thing. Still think I was in shock.
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RedSquirrelUK
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Location: The UK's beautiful West Country
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Post by RedSquirrelUK on Feb 23, 2023 10:34:28 GMT
I didn't have radiotherapy for my breast cancer in the end, but my Mum did for hers. She was 87 and had to struggle down the car park hill (no dropping-off area) to the front entrance, back up the hill again inside the hospital (no external access due to Covid), get undressed and have her treatment and reverse the process. I drove her and barely managed 2 crochet granny squares while she was gone - about 25 minutes in total. I think the actual radiation took about 5 minutes. Not the same as yours though.
She had an MRI too. I have to have annual MRIs with contrast dye for mine at the moment, and she thinks those are far worse. Face down in a tube in the worst noise, with the line in my vein holding me motionless, and ill-fitting headphones and very little contact for 40+ minutes. It's misery, but temporary. This is all temporary - I keep telling myself! I plan cards in minutest detail, and make lists of things I need to do in my head, just to keep my mind off it all.
It's funny what you say about memory changes. I "only" had surgery, chemo and immunotherapy (basically systematic poisoning for 17 months), but I struggled to concentrate. It was almost like being drunk, but without the fun part. I had to work so hard to concentrate that I probably shouldn't have been driving. I was wandering around the house "tidying up" but actually I did a lot of carrying things from room to room, then discovering that I was back where I started, still holding some of the same things. My brain was too muzzy to be frightened by it. For me, all that got better, although my memory is not what it was. I will never be the same again in so many ways. But I'm still here.
You're in my prayers. This will get better. It will.
How many sessions have you got? How often are they?
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Deleted
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May 4, 2024 11:36:22 GMT
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Post by Deleted on Feb 23, 2023 12:11:36 GMT
@redsquirreluk the "drunk" part for me was BEFORE surgery because I had no balance because of where the tumor was pressing. For a couple of weeks, I literally walked around like a drunk person and had to have help if I didn't have a wall to hold. Now it's just a bad hangover!
I don't want it to seem like I am not thankful because I really, truly am. All these little things I can deal with because I still have a great quality of life. I think I am just having a slip in confidence the last couple of days.
We are literally in a holding pattern. From what I understand, the scan with the mask is the last piece they needed to put it all together for the mapping. So we are just waiting for the "call". Don't know how many sessions or how often yet. The tech and nurse that were making my mask are the same people doing the treatments. SUPER SWEET and nice people. I just wanted to hug them. They told us that most likely it will not be more than 10 treatments and that they space them a couple of days apart. They've even given us the little booklet where you write down the next scheduled treatment. Just don't have a start day. Could be tomorrow or next week.
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Post by Basket1lady on Feb 24, 2023 0:18:27 GMT
This is pretty close to the mask, but the holes are a lot smaller AND they did one for the back of my head as well, so it's two pieces that are attached. I am assuming because the tumor is at the back of my head. It is still attached to my cerebellum. gsquaredmom I know you said you could move slightly, but I can't even open my eyes in this mask. I haven't asked if they could cut the eye holes out...not sure that I want to because I don't think it would help to open my eyes. ALL of you have given me such great tips and such GREAT support. It's exactly like you said basket1lady that I didn't even have time to blink when the surgery happened and I have had more time to dwell on the radiation part. People keep telling me I did the hard part (surgery) that the radiation is nothing compared to that. Logically, I know that... I am starting to discover things that are different about my brain like my ability to spell, write and read. My writing skills have always been my best asset and I am finding that I can't spell as good as I used to. When I read to my daughter at bedtime, I get tripped up on a set of words that I have to repeat a few times to say right. I can be in the kitchen cooking and turn around to get something out of the cabinet, and I am suddenly standing there not able to remember what I was going to do. I have discussed this with my surgeon and he said a) it may still be my brain healing from such a catastrophic (two brain bleeds during surgery) surgery or b) I may have some damage from the swelling of my brain (right before surgery) from the leaking CSF caused by the tumor. It just feels like these big waves that keep hitting me and I struggle around and stand up and another wave hits. It's "looking normal" but all these pains and emotions and changes that people can't see. I feel like I am whining because I know soooooo many of you Peas have been through such tough battles with cancer and have come out like champions. Big hugs to you. You are not whining. What would you say if it was one of us asking questions? One of the biggest things that I learned during my healing time was that both things can be true--that it could be worse and that it also really does suck for you. I often felt like a bit of an imposter. A friend in our group of moms had just died from brain cancer. Her symptoms are story are what pushed me to ask for help and not just pass it off as a bad sinus infection (my mass is scar tissue from "just" a sinus infection). I kept telling myself that it could be worse--that I could have cancer, that I could be dying, that the doctors are saying antibiotics will heal me. But they didn't. It took 4 rounds of antibiotics in increasing dosages and trying other antibiotics. And the mass left me unable to sit up or walk. It WAS bad, even if it wasn't cancer. So you just tell yourself right now that yes, it could be worse. But that for now, it's YOUR worse and that you have a right to feel sad and to want your old life back. And that you have the right to not like being held down on a table. And you also have the right to find options are resources that will help you fight to improve your status. I don't have any experience with masses on the cerebellum, but the brain does have an amazing capacity to heal itself. At the height of my symptoms, I was speaking gibberish. My nystagmus made me look like a crazy person. I couldn't hold a thought in my head and I walked down the hall like a drunken sailor. And then I needed a 2 hour nap to recover from that walk. Even just sitting up was a struggle for me and I was sleeping 16 hours a day. But once I got the right antibiotics and a LOT of physical and occupational therapy, I slowly came back to myself. It probably took a good 18 months--5 months searching for the problem for my vertigo and increasing symptoms and then another year of recovery. I'm 90% back. I don't think my memory is as good as it was or that I'm as smart as I once was, but I'm me again. Your doctor sounds like a good one. Trust him, and that including sharing with him how you are feeling. Of course you are nervous. The unknown enemy is always the hardest to fight. I predict that you will feel better after your first treatment. That you won't like it, but that you can get through it. And that's all you need right now. Just to get through it. |
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Post by lisacharlotte on Feb 25, 2023 5:48:41 GMT
Cervical cancer. I had to have a mold for my hips/thighs to keep me in one position. I had radiation 5 days a week for 6 weeks, then targeted high dose radiation, I think 3 rounds. Each daily treatment was 15 minutes, so from getting on the table to end took about 25 minutes total. I was usually falling asleep at the end. The chemo/radiation plus working full time was exhausting. Radiation gave me a sunburn on my butt and it was VERY tanned from the radiation. It also burned the hell out of my bladder/urethra. I ate those pills that turn your pee orange when you get a UTI like candy. The pain from that was worse than anything else I went through.
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Deleted
Posts: 0
May 4, 2024 11:36:22 GMT
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Post by Deleted on Mar 9, 2023 18:24:44 GMT
Posting for update
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Post by mom on Mar 9, 2023 18:31:03 GMT
I am so, so proud of you! You are absolutely brave (everyday! Not just today!). Today you took a big step in getting past this horrible tumor!
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Rhondito
Pearl Clutcher
MississipPea
Posts: 4,661
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Post by Rhondito on Mar 9, 2023 19:05:08 GMT
I'm so happy to see this! The not knowing is the worst part - now you know what to expect and hopefully will be more relaxed and not as apprehensive. One treatment behind you now - Yay you!
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